A  B  C  D  E  F  G  H  I  J  K  L  M  N  O  P  Q  R  S  T  U  V  W  X  Y  Z  

  Subjects -> DISABILITY (Total: 103 journals)
The end of the list has been reached or no journals were found for your choice.
   Most Followed Journals

   Top Publishers

   Top Subjects
Similar Journals
Journal Cover
Autism
Journal Prestige (SJR): 1.739
Citation Impact (citeScore): 4
Number of Followers: 226  
 
  Hybrid Journal Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1362-3613 - ISSN (Online) 1461-7005
Published by Sage Publications Homepage  [1176 journals]
  • Evaluating a new supported employment internship programme for autistic
           young adults without intellectual disability

    • Free pre-print version: Loading...

      Authors: Maria Ashworth, Brett Heasman, Laura Crane, Anna Remington
      Abstract: Autism, Ahead of Print.
      Supported employment initiatives have been shown to increase employment rates for autistic people who want to enter the workforce. Despite the success of supported employment initiatives in increasing employment rates, little is known about the first-hand experiences and views of those involved. In the current study, we examined the experiences and views of autistic young adults without intellectual disability (‘interns’), employers and parents regarding a previously unevaluated paid internship scheme that offers tailored support for interns and employers before, during and after the internship, the Employ Autism network. In total, 51 participants (19 interns, 22 employers, 10 parents), across eight internships, engaged in semi-structured interviews. Reflexive thematic analysis was used to identify three themes, shared across participant groups: (1) the internship was ‘an invaluable experience’, (2) the internship helped break down autism-specific barriers to employment and (3) stakeholder groups had some unmet expectations. Drawing on this multi-informant qualitative evaluation of a novel supported employment scheme, we derive recommendations of best practice for supported employment initiatives for autistic young adults without intellectual disability.Lay abstractInternships designed for autistic people can help them to find employment, but there is little research about the experiences of those involved with internship schemes. To learn more about a new paid internship scheme in the United Kingdom, the Employ Autism network, we interviewed 19 interns, who were autistic young adults without intellectual disability taking part in one of eight different internships. We also interviewed 22 employers (who worked with the interns), and 10 parents (who supported their children in the internship). The interns, employers and parents told us that the Employ Autism network was a valuable experience that helped the interns become more confident. Also, the parents said it helped the interns become more independent. All the groups said the Employ Autism network removed common barriers to employment, and interns and parents said it would help interns get a job in future. Employers and interns said they understood each other better during the internship, and employers said the internship made them think about how their organisations might have accidentally had barriers in place that could stop autistic people getting employed (barriers that they wanted to address in future). However, all groups said some expectations of the internship were not met. These findings suggest the Employ Autism network is helpful for autistic young adults without intellectual disability and employers, but that there are ways that the internships could be improved in future. We discuss the lessons we can learn from the Employ Autism network that might help others who are thinking about setting up, or getting involved in, similar internship schemes.
      Citation: Autism
      PubDate: 2023-11-28T11:01:52Z
      DOI: 10.1177/13623613231214834
       
  • Social motor synchrony in autism spectrum conditions: A systematic review

    • Free pre-print version: Loading...

      Authors: Devyn Glass, Nicola Yuill
      Abstract: Autism, Ahead of Print.
      Some researchers suggest difficulties synchronising with a partner could underpin the social differences associated with Autism Spectrum Condition, potentially acting as a marker for autism. Social Motor Synchrony (SMS) is one aspect of synchrony that could augment observational diagnostic procedures. However, the full breadth of literature examining SMS in autism has not been systematically reviewed. A systematic review following the Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines yielded 29 papers meeting inclusion criteria. Of 21 studies including a comparison group, all indicated weaker SMS between two autistic partners and in mixed-neurotype partnerships compared with two non-autistic partners. Papers involving mixed-neurotype pairs without a comparison group showed higher than chance SMS and demonstrated an increase in SMS over time following rhythm-based interventions. Although research so far demonstrates weaker SMS in pairs involving an autistic partner compared with non-autistic pairs, we identified several limitations which may have influenced SMS in autistic people and their partners. Further work is needed with autistic partnerships, more natural and preferred tasks within comfortable settings and partnerships, and more work to identify the basis of synchrony differences. We set out implications for design of further research.Lay abstractWhen two people interact, they often fall into sync with one another by moving their bodies at the same time. Some say autistic people are not as good as non-autistic people at moving at the same time as a partner. This has led some researchers to ask whether measuring synchrony might help diagnose autism. We reviewed the research so far to look at differences in Social Motor Synchrony (SMS) (the way we move together) between autistic people and people they interact with. The research suggests that interactions involving an autistic partner (either two autistic partners, or an autistic and non-autistic partner) show lower synchrony than a non-autistic pair. However, we recognised elements in the research so far that may have affected SMS in interactions involving an autistic person. One way SMS may have been affected in research so far might be the way interactions have been set up in the research studies. Few papers studied interactions between two autistic people or looked at synchrony in comfortable environments with autistic-preferred tasks. The studies also do not explain why synchrony might be different, or weaker, in pairs involving autistic partners. We use these limitations to suggest improvements for future research.
      Citation: Autism
      PubDate: 2023-11-28T10:08:21Z
      DOI: 10.1177/13623613231213295
       
  • Community-guided, autism-adapted group cognitive behavioral therapy for
           depression in autistic youth (CBT-DAY): Preliminary feasibility,
           acceptability, and efficacy

    • Free pre-print version: Loading...

      Authors: Jessica M Schwartzman, Marissa C Roth, Ann V Paterson, Alexandra X Jacobs, Zachary J Williams
      Abstract: Autism, Ahead of Print.
      This study examined the preliminary feasibility, acceptability, and efficacy of an autism-adapted cognitive behavioral therapy for depression in autistic youth, CBT-DAY. Twenty-four autistic youth (11–17 years old) participated in the pilot non-randomized trial including 5 cisgender females, 14 cisgender males, and 5 non-binary youth. Youth participated in 12 weeks of, CBT-DAY and youth depressive symptoms (i.e., primary clinical outcome) and emotional reactivity and self-esteem (i.e., intervention mechanisms) were assessed through self-report and caregiver report at four timepoints: baseline (week 0), midpoint (week 6), post-treatment (week 12), and follow-up (week 24). Results suggested that CBT-DAY may be feasible (16.67% attrition) in an outpatient setting and acceptable to adolescents and their caregivers. Bayesian linear mixed-effects models showed that CBT-DAY may be efficacious in targeting emotional reactivity [βT1-T3 = −2.53, CrI95% (−4.62, −0.58), Pd = 0.995, d = −0.35] and self-esteem [βT1-T3 = −3.57, CrI95% (−5.17, −2.00), Pd > 0.999, d = −0.47], as well as youth depressive symptom severity [β = −2.72, CrI95% (−3.85, −1.63), Pd > 0.999]. Treatment gains were maintained at follow-up. A cognitive behavioral group therapy designed for and with autistic people demonstrates promise in targeting emotional reactivity and self-esteem to improve depressive symptom severity in youth. Findings can be leveraged to implement larger, more controlled trials of CBT-DAY. The trial was registered at Clinicaltrials.gov (Identifier: NCT05430022; https://beta.clinicaltrials.gov/study/NCT05430022).Lay AbstractDepression in youth is a significant public health problem worldwide, particularly for autistic youth who are over twice as likely to experience depression than their non-autistic peers. Although pathways to depression are complex, emotional reactivity and negative self-esteem are two risk factors for depression in autistic and non-autistic youth. Although autistic youth are more likely to experience depression than their non-autistic peers, psychotherapy options for autistic youth are very limited; community guidance in the development and testing of psychotherapy programs is a promising approach in autism. Therefore, in this study, we designed an autism-adapted CBT-DAY, in collaboration with autistic community members. Specifically, CBT-DAY combined neurodiversity-affirming and cognitive behavioral approaches to target emotional reactivity and self-esteem in youth to improve depressive symptom severity in a group setting across 12 weeks. We examined the preliminary feasibility, acceptability, and efficacy of CBT-DAY in a pilot non-randomized trial. In addition, we implemented a rigorous protocol for assessing, monitoring, and addressing potential harms in this intervention. Results from 24 autistic youth (11–17 years old) suggest that CBT-DAY may be feasible to use in an outpatient clinical setting and generally acceptable to youth and their caregivers. Participation in CBT-DAY may be associated with significant improvements in youth emotional reactivity and self-esteem, as well as depressive symptom severity per self-report only. Exploratory analyses showed that participation in CBT-DAY may also be associated with significant improvements in internalizing symptoms. Findings demonstrate the potential promise of neurodiversity-affirming and cognitive behavioral approaches to treating depressive symptoms in some autistic youth.
      Citation: Autism
      PubDate: 2023-11-27T08:42:02Z
      DOI: 10.1177/13623613231213543
       
  • Characterizing mechanisms of caregiver-mediated naturalistic developmental
           behavioral interventions for autistic toddlers: A randomized clinical
           trial

    • Free pre-print version: Loading...

      Authors: Maranda K Jones, Bailey J Sone, Jeffrey Grauzer, Laura Sudec, Aaron Kaat, Megan Y Roberts
      Abstract: Autism, Ahead of Print.
      To address the variability of naturalistic developmental behavioral intervention outcomes, the current study sought to isolate the effects of the instructional strategies of caregiver-mediated naturalistic developmental behavioral interventions. In this comparative efficacy trial, mothers of 111 autistic children (18–48 months) were randomized to learn one of two sets of naturalistic developmental behavioral intervention language facilitation strategies (responsive or directive). We aimed to characterize the effect of strategy type on language outcomes and explore the extent to which joint engagement outcomes mediated language outcomes. Children in the directive condition had significantly greater scores across multiple language assessments. At follow-up, the effect of strategy type on the frequency of spontaneous directed communication acts was fully mediated by coordinated joint engagement (indirect effect = −2.070, 95% CI = [−4.394, −0.06], p 
      Citation: Autism
      PubDate: 2023-11-25T06:33:21Z
      DOI: 10.1177/13623613231213283
       
  • Autistic young people adaptively use gaze to facilitate joint attention
           during multi-gestural dyadic interactions

    • Free pre-print version: Loading...

      Authors: Nathan Caruana, Patrick Nalepka, Glicyr A Perez, Christine Inkley, Courtney Munro, Hannah Rapaport, Simon Brett, David M Kaplan, Michael J Richardson, Elizabeth Pellicano
      Abstract: Autism, Ahead of Print.
      Autistic people often experience difficulties navigating face-to-face social interactions. Historically, the empirical literature has characterised these difficulties as cognitive ‘deficits’ in social information processing. However, the empirical basis for such claims is lacking, with most studies failing to capture the complexity of social interactions, often distilling them into singular communicative modalities (e.g. gaze-based communication) that are rarely used in isolation in daily interactions. The current study examined how gaze was used in concert with communicative hand gestures during joint attention interactions. We employed an immersive virtual reality paradigm, where autistic (n = 22) and non-autistic (n = 22) young people completed a collaborative task with a non-autistic confederate. Integrated eye-, head- and hand-motion-tracking enabled dyads to communicate naturally with each other while offering objective measures of attention and behaviour. Autistic people in our sample were similarly, if not more, effective in responding to hand-cued joint attention bids compared with non-autistic people. Moreover, both autistic and non-autistic people demonstrated an ability to adaptively use gaze information to aid coordination. Our findings suggest that the intersecting fields of autism and social neuroscience research may have overstated the role of eye gaze during coordinated social interactions.Lay abstractAutistic people have been said to have ‘problems’ with joint attention, that is, looking where someone else is looking. Past studies of joint attention have used tasks that require autistic people to continuously look at and respond to eye-gaze cues. But joint attention can also be done using other social cues, like pointing. This study looked at whether autistic and non-autistic young people use another person’s eye gaze during joint attention in a task that did not require them to look at their partner’s face. In the task, each participant worked together with their partner to find a computer-generated object in virtual reality. Sometimes the participant had to help guide their partner to the object, and other times, they followed their partner’s lead. Participants were told to point to guide one another but were not told to use eye gaze. Both autistic and non-autistic participants often looked at their partner’s face during joint attention interactions and were faster to respond to their partner’s hand-pointing when the partner also looked at the object before pointing. This shows that autistic people can and do use information from another person’s eyes, even when they don’t have to. It is possible that, by not forcing autistic young people to look at their partner’s face and eyes, they were better able to gather information from their partner’s face when needed, without being overwhelmed. This shows how important it is to design tasks that provide autistic people with opportunities to show what they can do.
      Citation: Autism
      PubDate: 2023-11-25T06:29:39Z
      DOI: 10.1177/13623613231211967
       
  • What’s in a name' The costs and benefits of a formal autism
           diagnosis

    • Free pre-print version: Loading...

      Authors: Sue Fletcher-Watson
      Abstract: Autism, Ahead of Print.

      Citation: Autism
      PubDate: 2023-11-24T11:09:05Z
      DOI: 10.1177/13623613231213300
       
  • ‘I’m not just being difficult . . . I’m finding it difficult’:
           A qualitative approach to understanding experiences of autistic parents
           when interacting with statutory services regarding their autistic child

    • Free pre-print version: Loading...

      Authors: Sarah Radev, Megan Freeth, Andrew R Thompson
      Abstract: Autism, Ahead of Print.
      The experiences of autistic parents when interacting with statutory services for their autistic children is not well understood. This study investigates the experiences of autistic parents’ interactions with statutory services, including education and healthcare, in relation to their autistic children. Interpretative Phenomenological Analysis was used to investigate their experiences. Ten autistic mothers of autistic children in mainstream education completed semi-structured interviews, which were co-developed with autistic parents. Two superordinate themes were developed: (1) The wider system is the problem and (2) Feeling judged and stigmatised. While Theme 1 demonstrates some similarities in the experiences of autistic parents to that of non-autistic parents in previous studies, theme 2 is unique to autistic parents who may feel that they are being treated differently. These themes indicate the importance of training encouraging a strength-based rather than deficit-based understanding of autism. Participants highlighted the wider system is the problem rather than individual professionals, and that it places some families at a disadvantage.Lay abstractBecoming a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. The main researcher is also an autistic parent to an autistic child and other experts by experience were consulted in the development of the study. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and focus on positive aspects of autism, rather than negative.
      Citation: Autism
      PubDate: 2023-11-24T11:05:26Z
      DOI: 10.1177/13623613231212794
       
  • Shifting the centre of gravity: Towards a truly global representation in
           autism research

    • Free pre-print version: Loading...

      Authors: Gauri Divan, Chung-Hsin Chiang, Michele Villalobos, Muideen Bakare, Rosa A Hoekstra
      Abstract: Autism, Ahead of Print.

      Citation: Autism
      PubDate: 2023-11-20T12:09:16Z
      DOI: 10.1177/13623613231214644
       
  • Preschool teachers’ knowledge, beliefs, and self-efficacy concerning
           autism: A parallel mixed-methods study of an intervention to improve
           autism identification

    • Free pre-print version: Loading...

      Authors: Sahar Mohammed Taresh, Laura M Morett, Sumaia Mohammed Zaid, Samsilah Roslan, Mohammed Taresh Taleb, Pu Song, Nor Aniza Ahmad, Sarah Noman
      Abstract: Autism, Ahead of Print.
      Preschool teachers can play a critical role in early detection of autism. Equipping preschool teachers with prerequisite knowledge and skills would allow them to identify children with probable autism and referral to diagnostic services. This study aimed to investigate the impact of an educational module (EMiASD) that prepared preschool teachers to identify autism symptoms. The sample included 144 preschool teachers, of which 120 were stratified and randomly assigned to an intervention arm receiving training in EMiASD (n = 60) or a comparison arm receiving standard training (n = 60) using a parallel mixed-methods design. Responses to open-ended questions about video case studies revealed improvement in the identification of autism symptoms in preschool teachers in the intervention arm, in contrast to preschool teachers in the comparison arm. Moreover, significant changes in knowledge, belief, and self-efficacy about autism favoured EMiASD. Overall, these results demonstrate the influence of EMiASD in the Yemeni cultural context.Lay AbstractPreschool teachers can play a critical role in early detection of autism. Equipping preschool teachers with prerequisite knowledge and skills would allow them to identify children with probable autism and referral to diagnostic services. This study aimed to investigate the impact of an educational module (EMiASD) that prepared preschool teachers to identify autism symptoms. The sample included 144 preschool teachers, of which 120 were stratified and randomly assigned to an intervention arm receiving training in EMiASD (n = 60) or a comparison arm receiving standard training (n = 60) using a parallel mixed-methods design. Responses to open-ended questions about video case studies revealed improvement in the identification of autism symptoms in preschool teachers in the intervention arm, in contrast to preschool teachers in the comparison arm. Moreover, significant changes in knowledge, belief, and self-efficacy about autism favoured EMiASD. Overall, these results demonstrate the influence of EMiASD in the Yemeni cultural context.
      Citation: Autism
      PubDate: 2023-11-20T12:02:10Z
      DOI: 10.1177/13623613231211850
       
  • Mindreading beliefs in same- and cross-neurotype interactions

    • Free pre-print version: Loading...

      Authors: Elizabeth Sheppard, Sophie Webb, Helen Wilkinson
      Abstract: Autism, Ahead of Print.
      A large sample of autistic and non-autistic adults was recruited to investigate whether self-reported beliefs about their own and other people’s mindreading abilities were in line with either mindreading deficit accounts of autism or the double empathy problem (DEP) (which proposes mindreading difficulties are relational in autism). Three hundred and forty-eight (139 autistic) participants completed an online questionnaire which asked about autism identification and diagnostic status and their beliefs about their own mindreading abilities in relation to autistic and non-autistic others, and about autistic and non-autistic others’ abilities to read their (the participant’s) own minds. While autistic participants did report weaker mindreading abilities, this was only true in relation to non-autistic others. Both groups reported better mindreading abilities in same- than other-neurotype interactions, with autistic participants reporting mindreading abilities commensurate with non-autistic participants in relation to autistic targets. The same pattern was found when participants were asked about other people’s mindreading abilities. The findings were more consistent with the DEP than deficit theories, as the target reference group strongly impacted participants’ perceived mindreading abilities. While self-reported beliefs do not necessarily reflect actual mindreading abilities, they may still have important consequences for intergroup relations and social outcomes for autistic people.Lay AbstractAutistic people are often characterised as having problems with mindreading, which refers to understanding other people’s thoughts, beliefs and feelings. However, it has recently been suggested that mindreading difficulties may be a two-way issue between autistic and non-autistic people. This would imply that autistic people may not have difficulty reading the minds of other autistic people, whereas non-autistic people may struggle to read autistic people effectively. In this study, we created a survey in which we asked a relatively large sample of autistic and non-autistic people to rate their own and others’ mindreading abilities in relation to autistic and non-autistic others, respectively. Both groups believed that they were better at reading others in their own group than the other group. The autistic respondents reported levels of mindreading skill at least commensurate with the non-autistic respondents when the mind to be read was specified as autistic. Thus, both groups of participants’ responses were consistent with the notion that mindreading abilities are relational. Although self-reports are subjective, such beliefs could have important consequences for well-being and intergroup relations.
      Citation: Autism
      PubDate: 2023-11-18T11:02:14Z
      DOI: 10.1177/13623613231211457
       
  • A short report on a preliminary interventional study to evaluate
           play-mediated interaction skills in caregivers of children with autism
           spectrum disorder from Sri Lanka

    • Free pre-print version: Loading...

      Authors: Pamoda Madhubhashini Wanniachchi, Samanmali P Sumanasena
      Abstract: Autism, Ahead of Print.
      Caregivers are increasingly recognised as significant in providing naturalistic interventions for children with autism spectrum disorder in high-income countries and low- and middle-income countries including Sri Lanka. It is imperative to assess the impact of programmes targeting desired parenting skills within cultural boundaries. A preliminary study evaluated the effectiveness of a play-based parent coaching programme by assessing caregiver interaction skills. A mixed-method approach included a prospective pre–post interventional study. A caregiver skills assessment checklist was designed by adapting a freely available tool to assess caregiver–child interactions following a 3-h parent coaching programme. Pre-/post-training 10-min video recordings were obtained for each child–caregiver dyad 2 weeks apart. Thirty mothers (25–55 years) participated. Mean scores improved significantly in all caregivers (p 
      Citation: Autism
      PubDate: 2023-11-09T08:47:37Z
      DOI: 10.1177/13623613231211370
       
  • Short report: Evaluation of wider community support for a neurodiversity
           teaching programme designed using participatory methods

    • Free pre-print version: Loading...

      Authors: Reesha Zahir, Alyssa M. Alcorn, Sarah McGeown, Will Mandy, Dinah Aitken, Fergus Murray, Sue Fletcher-Watson
      Abstract: Autism, Ahead of Print.
      Children with neurodevelopmental diagnoses often experience discrimination from their peers at school. This may result from a lack of understanding, and intolerance of differences in their thinking, communication and social interactions. Learning About Neurodiversity at School (LEANS) is a teaching programme designed to educate primary school children about the concept of neurodiversity. The LEANS programme was created by a neurodiverse team, using participatory methods. In the current study, we evaluated whether the wider neurodiverse community endorsed the planned design generated by our participatory approach. Respondents (n = 111) rated their support for key elements of the planned LEANS content, via an online survey. Participants were majority neurodivergent (70%), 98% of whom reported moderate-to-high familiarity with neurodiversity concepts. Over 90% of respondents expressed support for the planned content presented, and 73% of respondents endorsed the draft neurodiversity definition provided. A small number of respondents provided open-ended comments giving further detail on their views. Overall, the LEANS programme plan received a high level of support from this independent, neurodiversity-aware sample – demonstrating the potential of small-group participatory methods to generate wider community support. The completed resource is now available as a free online download.Lay abstractChildren with diagnoses such as autism, attention-deficit/hyperactivity disorder (ADHD), dyslexia and so on often experience bullying at school. This group can be described as neurodivergent, meaning they think and process information differently from most people. Previous research suggests that increasing people’s knowledge can be an effective way to reduce stigma and bullying. Therefore, we decided to create a primary school resource to teach about neurodiversity – the concept that all humans vary in how our brains work. Working with educators, our research team – which included neurodivergent people – developed plans for a teaching programme called Learning About Neurodiversity at School (LEANS). Next, we wanted to know whether these plans, developed by our small neurodiverse team, would be endorsed by the wider community. To find out, we conducted an online feedback survey about our plans for the resource. We analysed feedback from 111 people who participated. Most of them identified as neurodivergent (70%) and reported being familiar with neurodiversity (98%), meaning they could provide an informed opinion on our plans. Over 90% of people expressed support for the planned programme content described in the survey, and 73% of them approved our intended definition of the resource’s core concept, neurodiversity. From these results, we concluded that there was a high level of support for the planned LEANS programme content across those from the wider community who completed the survey. Consequently, we continued developing the LEANS programme in line with the initial plans from our neurodiverse team. The completed resource is now available as a free download.
      Citation: Autism
      PubDate: 2023-11-09T08:44:37Z
      DOI: 10.1177/13623613231211046
       
  • Toward a strengths-based model for designing virtual reality learning
           experiences for autistic users

    • Free pre-print version: Loading...

      Authors: Matthew Schmidt, Nigel Newbutt, Minyoung Lee, Jie Lu, Marc-Sonley Francois, Pavlo D Antonenko, Noah Glaser
      Abstract: Autism, Ahead of Print.
      This study presents a strengths-based framework for designing virtual reality experiences tailored to the needs and abilities of autistic individuals. Recognizing the potential of virtual reality to provide engaging and immersive learning environments, the framework aligns the strengths and preferences of autistic users with the affordances of virtual reality platforms. Drawing on the existing literature and empirical findings, the framework highlights key areas of alignment, including visual perception, anxiety management, attention to differences, concrete thinking, and response to positive feedback. The framework emphasizes the importance of involving autistic individuals in the co-design and co-creation of virtual reality technologies to ensure a more tailored and preferred user experience. By adopting a strengths-based approach and actively involving autistic individuals, the design and implementation of virtual reality interventions can better address their unique needs and foster positive outcomes. The study concludes by advocating for continued research and collaboration to advance the field of virtual reality technology for autistic individuals and to work toward shared goals with the autistic community.Lay abstractVirtual reality has been studied for its potential in supporting individuals with autism, but existing research often focuses on deficits and lacks consideration of individual preferences and strengths. This article introduces a framework that emphasizes the strengths and abilities of autistic individuals when designing virtual reality interventions. It builds upon an existing taxonomy of educational technology affordances and extends it to align with the unique needs of autistic individuals. The framework provides guidance for incorporating virtual reality technology that supports and amplifies autistic strengths, such as visual perception and response to positive feedback. The framework has implications for practice, research, and policy. For practitioners, it offers a tool for designing virtual reality experiences that cater to the strengths of autistic individuals, enhancing engagement and educational outcomes. Researchers can utilize the framework to guide the development of user-centered virtual reality interventions and expand our understanding of the potential benefits of virtual reality for autistic populations. Policymakers and educators can consider this framework when incorporating virtual reality into educational settings, ensuring that virtual reality technology is used in a way that aligns with the strengths and needs of autistic learners. Overall, the framework promotes a strengths-based approach in utilizing virtual reality technology for individuals with autism, fostering inclusivity and maximizing the benefits of immersive experiences.
      Citation: Autism
      PubDate: 2023-11-08T10:50:13Z
      DOI: 10.1177/13623613231208579
       
  • Bilingual exposure might enhance L1 development in Cantonese–English
           bilingual autistic children: Evidence from the production of focus

    • Free pre-print version: Loading...

      Authors: Haoyan Ge, Albert Kwing Lok Lee, Hoi Kwan Yuen, Fang Liu, Virginia Yip
      Abstract: Autism, Ahead of Print.
      This study investigated bilingualism effects on the production of focus in 5- to 9-year-old Cantonese–English bilingual autistic children’s L1 Cantonese, compared to their monolingual autistic peers as well as monolingual and bilingual typically developing children matched in nonverbal IQ, working memory, receptive vocabulary and maternal education. The results from an elicitation task showed that monolingual autistic children had significantly lower accuracy than typically developing children in producing focus in subject and object positions. Bilingual autistic children in general performed similarly to monolingual autistic children but outperformed their monolingual autistic peers in the production of object focus with a significantly higher accuracy. The total amount of English exposure did not relate to the accuracy of focus production in autistic and typically developing children. Our results also revealed autistic children’s tendency to make use of less prosodic means to produce focus. The overall findings indicate that bilingual exposure has no detrimental effect on the language skills of autistic children but might enhance the production of focus in bilingual autistic children’s L1 Cantonese.Lay abstractIt is commonly believed among professionals and parents that exposure to two languages imposes an additional burden on children with autism spectrum disorder. However, there is a lack of empirical evidence to support or reject this belief. With the prevalence of autism and an increasing number of children growing up bilingual, it is urgent to understand how bilingual exposure interacts with autism. Bilingual autistic children from Hong Kong, with Cantonese as their first language and English as their second language, took part in the study. We used a production game to test how bilingual autistic children use different levels of linguistic knowledge to produce contrastive information in real conversations, compared to their monolingual autistic peers and typically developing children matched in language abilities, nonverbal IQ, working memory and maternal education. We found that bilingual autistic children performed as good as typically developing children in general, and they even performed better than monolingual autistic children. Our findings suggest a bilingual advantage in autistic children in conveying constative information in sentences. We thus encourage parents to engage their children in rich bilingual environments. Clinicians, educators and other professionals may also consider adding bilingual aspects in training programmes to support families raising bilingual autistic children.
      Citation: Autism
      PubDate: 2023-11-08T10:42:01Z
      DOI: 10.1177/13623613231207449
       
  • Coming out autistic at work: A review of the literature

    • Free pre-print version: Loading...

      Authors: Melissa A Sreckovic, Tia R Schultz, Suzanne Kucharczyk, Nancy Welsh-Young
      Abstract: Autism, Ahead of Print.
      Research consistently documents the negative postsecondary outcomes of autistic individuals. Identifying facilitators and barriers to obtaining and maintaining employment is imperative to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a facilitator or barrier to obtaining and maintaining employment, but little is known about the lived experiences of individuals on the spectrum regarding diagnosis disclosure at work. To ascertain why autistic individuals choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support autistic individuals’ transition to employment.Lay abstractResearch consistently documents the poor postsecondary outcomes of autistic individuals. It is important to identify supports that help autistic individuals get and keep jobs to improve postsecondary outcomes. Autism diagnosis disclosure at work may serve as a support (e.g., receiving accommodations) or as a barrier (e.g., discrimination) to getting and keeping employment, but little is known about the lived experiences of autistic individuals on diagnosis disclosure at work. To better understand why individuals on the spectrum choose to pursue disclosure or choose not to disclose at work, how they disclose, and the consequences of that disclosure, a state-of-the-art literature review was conducted. Ten studies met the final inclusion criteria and were synthesized to provide guidance to autistic individuals, families, and professionals who support their transition to employment. Findings from the review indicate that diagnosis disclosure is a highly complex decision. Across reviewed studies, participants chose to pursue disclosure for specific reasons, including access to accommodations or support, increase understanding, and advocate for self or others. Autistic individuals participating across reviewed studies shared they chose not to disclose primarily due to fears of discrimination and experience of stigma. Both the hopes (access to accommodations and supports) and fears (bullying and discrimination) were validated in the experienced consequences of disclosure. More research is needed on the contextual experiences of how individuals on the spectrum disclose their diagnosis at work.
      Citation: Autism
      PubDate: 2023-11-08T10:38:14Z
      DOI: 10.1177/13623613231206420
       
  • Diabetes mellitus in privately insured autistic adults in the United
           States

    • Free pre-print version: Loading...

      Authors: Daniel Gilmore, Brittany N Hand
      Abstract: Autism, Ahead of Print.
      Diabetes mellitus is a challenging chronic health condition at the forefront of attention of the healthcare system. Important estimates quantifying how diabetes prevalence varies by age are available for the general population, but these estimates are poorly characterized among autistic adults. Improved diabetes prevalence and likelihood estimates are needed to understand the impact of diabetes on this population. We analyzed IBM MarketScan health claims data from 2019 to 2020 to estimate diabetes prevalence among privately insured autistic (N = 54,500) and non-autistic adults (N = 109,000) and estimate autistic adults’ likelihood of diabetes relative to non-autistic adults at 5-year age intervals (e.g. 18–22 to 23–27) when controlling for demographic factors. Diabetes prevalence was 5.15% for autistic adults and 3.07% for non-autistic adults. Autistic adults had a higher likelihood of diabetes than non-autistic adults at most 5-year age intervals, with the greatest difference at ages 23–37 (odds ratio = 2.67; 95% confidence interval = 2.33–3.06). Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes. Thus, development of diabetes support services and programs that accommodate autistic adults’ individualized needs are important for future study to promote optimal diabetes outcomes for this population.Lay abstractDiabetes is a chronic health condition that is challenging to manage. Estimates of how common diabetes is among non-autistic adults are available, but improved estimates for autistic adults are needed. The purpose of this study was to obtain improved diabetes estimates for autistic adults. We analyzed a large private health insurance claims database to estimate how common diabetes was among autistic adults, and how likely autistic adults were to have diabetes compared to non-autistic adults at 5-year age intervals throughout adulthood (e.g. 18–22, 23–27). We found that diabetes was more common among autistic adults than non-autistic adults and that autistic adults were significantly more likely than non-autistic adults to have diabetes throughout most of adulthood. Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes in adulthood. The development of diabetes support services and programs that accommodate autistic adults’ individual needs are important for future study to promote positive diabetes outcomes for autistic adults.
      Citation: Autism
      PubDate: 2023-10-27T08:21:30Z
      DOI: 10.1177/13623613231206421
       
  • Time to level up: A systematic review of interventions aiming to reduce
           stigma toward autistic people

    • Free pre-print version: Loading...

      Authors: So Yoon Kim, Da-Yea Song, Kristen Bottema-Beutel, Kristen Gillespie-Lynch
      Abstract: Autism, Ahead of Print.
      This systematic review examined 26 studies that implemented interventions to reduce stigma toward autistic people; the intervention recipients were primarily non-autistic people. Participants in the included studies were primarily White K-12 or undergraduate students. Most studies utilized one-time video or computer-based instruction, and more recent interventions tended to utilize online platforms. Studies varied in several respects: whether an autistic person was involved in the development and/or delivery of interventions, the intervention content, and the types and internal consistencies of the outcome variables. Risks of bias were prevalent. Masked outcome variables were used infrequently, and investigators were usually aware of group allocation. Among randomized controlled trials, the randomization processes were not sufficiently described, and non-randomized studies of interventions frequently did not account for confounding factors that could explain changes in stigma. Many non-randomized studies of interventions made unwarranted, causal claims about the intervention effectiveness on stigma reduction, and most studies did not sufficiently address limitations related to study design and risk of bias. The recommended areas of improvement include identifying active ingredients of interventions, measuring reliable changes in behaviors and attitudes, and targeting structural stigma. In addition, more robust procedures such as randomizing participants, using masked variables, and controlling baseline differences should be utilized.Lay abstractHow non-autistic people think about autistic people impacts autistic people negatively. Many studies developed trainings to reduce autism stigma. The existing trainings vary a lot in terms of study design, content, and reported effectiveness. This means that a review studying how the studies have been conducted is needed. We also looked at the quality of these studies. We collected and studied 26 studies that tried to reduce stigma toward autistic people. The studies often targeted White K-12 students and college students. Most trainings were implemented once. Trainings frequently used video or computer. Especially, recent studies tended to use online platforms. The study quality was poor for most studies. Some studies made inaccurate claims about the intervention effectiveness. Studies did not sufficiently address study limitations. Future trainings should aim to figure out why and how interventions work. How intervention changes people’s behavior and thoughts should be studied. Researchers should study whether the training can change the societal stigma. Also, researchers should use a better study design.
      Citation: Autism
      PubDate: 2023-10-27T08:18:26Z
      DOI: 10.1177/13623613231205915
       
  • Cognitive emotion regulation difficulties increase affective reactivity to
           daily-life stress in autistic adolescents and young adults

    • Free pre-print version: Loading...

      Authors: Laura Ilen, Clémence Feller, Maude Schneider
      Abstract: Autism, Ahead of Print.
      Increased reactivity to daily stressors is associated with mental health difficulties, which are common in autistic individuals. We investigated affective reactivity to daily-life stress, cognitive emotion regulation, and their link with co-occurring mental health symptoms in adolescents and young adults with autism. A 6-day ecological momentary assessment protocol was used to assess perceived daily-life stress (event-related, activity-related, and social stress) as well as negative affects in autistic (n = 39, age = 18.4) and non-autistic (n = 55, age = 18.1) participants. Co-occurring mental health difficulties, social functioning, and cognitive emotion regulation were assessed with questionnaires and clinical evaluations. Youth with autism showed higher levels of perceived stress related to their daily social context and activities, as well as an increased affective reactivity to activity-related stressors compared with non-autistic youth. Moreover, they reported using less adaptive and more non-adaptive emotion regulation, the latter increasing their affective response to daily stressors and possibly contributing to the severity of co-occurring mental health symptoms. Our findings demonstrate high perceived daily-life stress in autistic adolescents and young adults. To minimize the negative effects of stress and the development of mental health symptoms, interventions could focus on effective stress management and strategies that autistic young people use to manage their emotions.Lay abstractPrevious research has shown that autistic individuals report high levels of perceived stress and have an increased likelihood of developing mental health difficulties. Increase in individuals’ negative emotions in relation to perceived stress (i.e. affective reactivity to stress) is a known risk factor for mental health difficulties. In this study, we investigated perceived daily stress and affective reactivity to stress in autistic (n = 39, age = 18.4) and non-autistic (n = 55, age = 18.1) adolescents and young adults. We used the ecological momentary assessment, a technique that allows to assess individuals repeatedly in their daily life using their smartphone. Moreover, participants filled a questionnaire to evaluate the strategies they use to regulate emotions when faced with difficulties. Finally, a clinical interview and a parent-report questionnaire were used to assess mental health symptoms. Autistic youth reported higher levels of perceived daily stress compared with non-autistic peers. Moreover, they showed increased affective reactivity to stress related to their daily activities. Autistic participants reported more emotion regulation difficulties (e.g. more repetitive thinking of difficulties) compared with non-autistic participants. Difficulties in emotion regulation increased negative emotions in relation to stress and might contribute to the severity of mental health symptoms. We conclude that adolescents and young adults with autism report high perceived stress in their daily lives. To minimize the negative impact of stress and the development of mental health symptoms, people supporting autistic young people could focus on stress management skills and the strategies that the youth use to manage emotions.
      Citation: Autism
      PubDate: 2023-10-26T12:40:37Z
      DOI: 10.1177/13623613231204829
       
  • Disclosing an autism diagnosis improves ratings of candidate performance
           in employment interviews

    • Free pre-print version: Loading...

      Authors: Jade Eloise Norris, Rachel Prosser, Anna Remington, Laura Crane, Katie Maras
      Abstract: Autism, Ahead of Print.
      Employment interviews can be challenging for autistic people. In addition to standard interview procedures often being inaccessible, features associated with autism (including atypical emotional expression, eye-contact, and gestures) may lead to negative first impressions. Research using vignettes and ‘thin slices’ of communication indicate that perceptions of an autistic individual can be improved when their autism diagnosis is disclosed. Here, we examined the impact of diagnostic disclosure on judgements of autistic adults undergoing an entire mock employment interview. A total of 119 participants (known as ‘raters’) watched a video of an autistic candidate’s mock employment interview, after which they provided overall impressions of the candidate on factors such as confidence, motivation, and knowledgeability. Raters were either (1) unaware of the interviewee’s diagnosis, (2) aware of their diagnosis, or (3) aware of their diagnosis and provided with information about autism. Results indicate that diagnostic disclosure improved perceptions of autistic candidates across all dimensions compared to when raters were unaware of their diagnosis. The provision of additional information about the diagnosis did not further improve ratings. The findings have important implications for employers and autistic people, who should consider the potential impact of diagnostic disclosure prior to interviewing for a role.Lay AbstractEmployment interviews are challenging for many autistic people, for example, due to difficulties with interpreting questions. Autistic people also have differences in non-verbal communication, such as emotional expression, eye-contact, and gestures, with research showing that these factors negatively affect first impressions. Some studies have shown that perceptions of autistic people are more positive when the person observing them, such as an interviewer, is already aware of their diagnosis. However, previous research has not studied how disclosing one’s autism diagnosis affects perceptions of a candidate undergoing a full employment interview. Participants in this study acted as raters, who watched a video of an autistic person undergoing a mock employment interview with a researcher, and then rated their overall impressions of them on factors important to real-world hiring decisions, such as confidence, motivation, and knowledgeability. Prior to watching the interview, raters were either (1) not aware of the interviewee’s diagnosis, (2) made aware of their diagnosis, or (3) made aware of their diagnosis and provided with additional information about autism, such as differences in behaviours and communication. The results show that disclosing an autism diagnosis improved ratings compared to not disclosing the diagnosis. Providing additional information about autism alongside the diagnostic label did not improve ratings further. The findings are important for employers and autistic people; employers should consider improving procedures by which autistic people can disclose their diagnosis prior to interview should they wish, and autistic people may wish to consider the potential benefits of disclosing their diagnosis.
      Citation: Autism
      PubDate: 2023-10-26T12:35:53Z
      DOI: 10.1177/13623613231203739
       
  • Infant responses to direct gaze and associations to autism: A live
           eye-tracking study

    • Free pre-print version: Loading...

      Authors: Maja Rudling, Pär Nyström, Giorgia Bussu, Sven Bölte, Terje Falck-Ytter
      Abstract: Autism, Ahead of Print.
      Being looked at is an important communicative signal, and attenuated responses to such direct gaze have been suggested as an early sign of autism. Using live eye tracking, we examined whether direct gaze elicits different gaze responses in infants at ages 10, 14 and 18 months with and without later autism in real-life interaction. The sample consisted of 169 infants: 35 with elevated likelihood of autism and subsequent diagnosis, 94 without subsequent diagnosis and 40 with typical likelihood of autism. Infants in all groups tended to look more towards the adult’s face shortly after the direct gaze occurred. Neither how much nor how quickly the infants responded to the direct gaze differentiated the without elevated likelihood of autism and subsequent diagnosis and with elevated likelihood of autism and subsequent diagnosis groups. Infants in the typical likelihood group looked more at the face after the direct-gaze event than infants in the two elevated likelihood groups, but this result is tentative. In an exploratory analysis, infants in the elevated likelihood of autism and subsequent diagnosis group looked away quicker from faces with direct gaze than infants in the typical likelihood group, but this measure did not correlate with dimensional autism or differentiate between the two elevated likelihood groups. The current results suggest that attenuated behavioural responses to direct gaze in infancy are neither strong nor specific early markers of autism.Lay abstractWhen other people look directly towards us, we often respond by looking back at them, and such direct-gaze responses are important for establishing eye contact. Atypical eye contact is common in autism, but how and when this aspect of autism develops is not well understood. Here, we studied whether how much and how quickly infants respond to others’ direct gaze is associated with autism in toddlerhood. We did this by measuring direct-gaze responses in a playful social interaction using live eye tracking. The study included 169 infants, of whom 129 had an elevated likelihood of developing autism due to having a first-degree family member with the condition, and 40 with typical likelihood of autism. In the elevated likelihood group, 35 were diagnosed with autism spectrum disorder at 3 years of age, and 94 were not. The results showed that infants in all three groups tended to increase their looking towards the adult’s face after the adult looked directly at them. However, neither how much nor how quickly the infants responded to direct gaze by looking back at the adult reliably differentiated the infants with or without subsequent autism. While infants in the elevated likelihood of autism and subsequent diagnosis group tended to look away quicker from faces with direct gaze than infants in the typical likelihood group, this measure did not differentiate between the two elevated likelihood groups. We interpret the results as supporting the view that atypical direct-gaze responses are not early markers of autism.
      Citation: Autism
      PubDate: 2023-10-26T12:30:14Z
      DOI: 10.1177/13623613231203037
       
  • Autistic adults’ views on the design and processes within randomised
           controlled trials: The APRiCoT study

    • Free pre-print version: Loading...

      Authors: Lucy Beasant, Alba Realpe, Sarah Douglas, Lorcan Kenny, Dheeraj Rai, Nicola Mills
      Abstract: Autism, Ahead of Print.
      The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples’ heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community.Lay abstractLarge randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population.
      Citation: Autism
      PubDate: 2023-10-26T12:25:57Z
      DOI: 10.1177/13623613231202432
       
  • Validity and feasibility of using the Modified Checklist for Autism in
           Toddlers, Revised with Follow-Up (M-CHAT-R/F) in primary care clinics in
           Singapore

    • Free pre-print version: Loading...

      Authors: Ruth Mingli Zheng, Siew Pang Chan, Evelyn C Law, Shang Chee Chong, Ramkumar Aishworiya
      Abstract: Autism, Ahead of Print.
      Screening for autism in childhood has been advocated as a part of standard care. Challenges exist with screening implementation and performance of screening tools in clinical practice. This study aimed to examine the validity and feasibility of using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) for screening of autism in Singapore. Caregivers completed the M-CHAT-R/F as a part of the routine 18-month well-child visit in seven primary care clinics. Screening and follow-up interviews were administered by trained nursing staff. Children screened positive and a subset of those screened negative underwent diagnostic assessments for autism, which included an Autism Diagnostic Observation Schedule, Second Edition. Participants were 5336 multiethnic children (mean age 18.6 ± 0.9 months, 51.3% male gender). In total, 113 (2.1%) were screened positive, of which 54 (1.0%) were classified to have autism after their diagnostic assessment. Sensitivity of the M-CHAT-R/F was 88.6%, specificity 71.4%, and positive predictive value 90.7% for an autism diagnosis. The majority of respondents rated the screening process as feasible within the clinic setting. The M-CHAT-R/F had acceptable psychometric properties and high feasibility when used in primary care settings in Singapore. Recommendations for implementation of systematic screening and future research are presented.Lay abstractSystematic screening for autism in early childhood has been suggested to improve eventual outcomes by facilitating earlier diagnosis and access to intervention. However, clinical implementation of screening has to take into account effectiveness and feasibility of use within a healthcare setting for accurate diagnosis of autism. In Singapore, autism screening using a structured screening tool is not currently employed as a part of routine well-child visits for children in primary care clinics. In this study, 5336 children (aged 17–20 months) were screened for autism using the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) during their 18-month well-child visit in seven primary care clinics. Screening and follow-up interviews were administered by nursing staff at each clinic. Children screened positive and a portion of those screened negative then underwent diagnostic assessments to determine whether they met the diagnostic criteria for autism. In total, 113 (2.1%) were screened positive, of which 54 (1.0%) met the criteria for autism. Children who screened positive and received a diagnosis accessed autism-specific intervention at an average age of 22 months. Nurses and physicians rated the acceptability and practicality of the M-CHAT-R/F highly. Therefore, the M-CHAT-R/F questionnaire was an effective and feasible tool for autism screening among 18-month-old children in this study. Future studies will be designed to determine the optimal age of screening and role of repeated screening in Singapore, as well as to better understand any potential improved outcomes nationwide compared with pre-implementation of autism screening.
      Citation: Autism
      PubDate: 2023-10-26T10:05:34Z
      DOI: 10.1177/13623613231205748
       
  • Contributing to an autism biobank: Diverse perspectives from autistic
           participants, family members and researchers

    • Free pre-print version: Loading...

      Authors: Rozanna Lilley, Hannah Rapaport, Rebecca Poulsen, Michael Yudell, Elizabeth Pellicano
      Abstract: Autism, Ahead of Print.
      There has been intense debate within the autistic and autism communities about the use of autism biobanks – repositories containing biological and phenotypic materials – and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank' And how did they feel about their involvement in that process' We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource.Lay abstractA lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created ‘biobanks’ – collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work.
      Citation: Autism
      PubDate: 2023-10-26T10:00:43Z
      DOI: 10.1177/13623613231203938
       
  • Emotion recognition in autism spectrum condition during the COVID-19
           pandemic

    • Free pre-print version: Loading...

      Authors: Tim Schnitzler, Christoph Korn, Sabine C. Herpertz, Thomas Fuchs
      Abstract: Autism, Ahead of Print.
      With the widespread use of masks in the COVID-19 pandemic, it is crucial to understand how emotion recognition is affected by partial face covering. Since individuals with autism spectrum condition often tend to look at the lower half of the face, they are likely to be particularly restricted in emotion recognition by people wearing masks, since they are now forced to look at the upper half of the face. This study compared the recognition of basic and complex emotions in individuals with and without autism spectrum condition, when faces were presented uncovered, with face masks, or with sunglasses. We also used eye tracking to examine group differences in gaze patterns during emotion recognition. Individuals with autism spectrum condition were less accurate at recognizing emotions in all three conditions. Averaged across the three stimulus types, individuals with autism spectrum condition had greater difficulty recognizing anger, fear, pride, and embarrassment than control group. There was no group difference in emotion recognition between the three conditions. However, compared to individuals without autism spectrum condition, there was no evidence of either gaze avoidance or preference for the mouth region. Our results suggest that emotion recognition is reduced in individuals with autism spectrum condition, but this is not due to differences in gaze patterns.Lay AbstractIn the COVID-19 pandemic, wearing face masks became mandatory to prevent the spread of the virus. However, they restrict the ability to recognize emotions to the upper part of the face. Since individuals with autism spectrum condition often tend to look at the lower half of the face, they may be particularly restricted in emotion recognition by people wearing masks, since they are now forced to look at the upper half of the face. The current study compared the recognition of facially expressed emotions between individuals with and without autism spectrum condition. Each photo was shown in three types, once uncovered, once with face mask, and once with sunglasses. Our results revealed a reduction in accuracy of individuals with autism spectrum condition at recognizing emotions in all three stimulus types and exhibited more difficulties distinguishing anger, fear, pride, and embarrassment. During the emotion recognition task, there was no difference in which facial areas the groups looked at. We did not find evidence that the disadvantages of individuals with autism spectrum condition in emotion recognition were due to looking at different areas of the face.
      Citation: Autism
      PubDate: 2023-10-26T09:51:44Z
      DOI: 10.1177/13623613231203306
       
  • Barriers to healthcare and a ‘triple empathy problem’ may lead to
           adverse outcomes for autistic adults: A qualitative study

    • Free pre-print version: Loading...

      Authors: Sebastian CK Shaw, Laura Carravallah, Mona Johnson, Jane O’Sullivan, Nicholas Chown, Stuart Neilson, Mary Doherty
      Abstract: Autism, Ahead of Print.
      Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt – in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem.Lay abstractAutistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people – all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt – in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth.
      Citation: Autism
      PubDate: 2023-10-17T08:00:01Z
      DOI: 10.1177/13623613231205629
       
  • Experiences of interpersonal victimization and abuse among autistic people

    • Free pre-print version: Loading...

      Authors: Sarah Douglas, Felicity Sedgewick
      Abstract: Autism, Ahead of Print.
      Intimate partner violence and sexual assault are under-researched experiences in autistic people’s lives. Recent research, however, has shown that autistic people are more likely to have been victimized than non-autistic people. This research, therefore, sought to explore the firsthand accounts of a range of autistic people about intimate partner violence and sexual assault. Twenty-four autistic adults with lived experience (6 male, 15 female, 3 non-binary) aged 25–61 years took part in semi-structured interviews online. They were asked about their experiences of intimate partner violence and sexual assault, whether and how they felt being autistic interacted with those experiences, and what recommendations they would have for improving education in the future. Almost all participants had repeated experiences of intimate partner violence and sexual assault, regardless of gender, and there were clear similarities in their stories. Six themes with subthemes were identified. These were ‘experiences of abuse’, ‘autism used against you’, ‘poor family models’, ‘impact of/on friendships’, ‘handling trauma’, and ‘recommendations for future practice’. Autistic people experience many of the same patterns of abuse as non-autistic people do, but there are unique autism-related vulnerabilities and outcomes. We found that there were a variety of responses to these experiences, and call for greater understanding so that autistic victims can be better supported.Lay abstractWhat do we already know'Autistic people are more likely to have negative life experiences than non-autistic people, from bullying and ostracization, to being victims of crime, to unemployment and homelessness. This includes being victims of intimate partner violence, sexual assault and domestic abuse. Quantitative work has suggested that as many as 90% of autistic people experience these forms of abuse in some form during their lives, but there is little work asking them to talk about harmful relationships in their own words.What does this article add'This article reports on interviews with 24 autistic adults about their experiences of being victims of intimate partner violence, sexual assault and/or domestic abuse. Some of the themes which came from these interviews are shared with non-autistic victims, but others appeared unique to autistic people. One of these was evidence for unique autism-related vulnerabilities, as well as the impact the abuse had on their relationships long term. Participants also talked about how the sex and relationship education they had received had inadequately prepared them for adult relationships, and how this had contributed to their struggle to recognize and react to abusive behaviour.Implications for practice, research and policyPolicies around intimate partner violence and sexual assault need to be updated to account for the different ways in which neurodivergent people (people whose brains process information differently from the majority) may discuss their experiences, rather than looking for ‘standard narratives’ as an indicator of a need for support. Relationship and sex education should be tailored for autistic young people to help them recognize abusive behaviours, and include how to respond to these safely. We recommend that future research tries to focus specifically on the abuse experiences of autistic men, non-binary and trans people, who have been under-represented in studies to date. In addition, much less is known about the abuse experiences of autistic people of colour or autistic people with intellectual disabilities, who also need to be actively included in these discussions.
      Citation: Autism
      PubDate: 2023-10-16T10:08:56Z
      DOI: 10.1177/13623613231205630
       
  • Addressing disruptive behaviors within naturalistic developmental
           behavioral interventions: Clinical decision-making, intervention outcomes,
           and implications for practice

    • Free pre-print version: Loading...

      Authors: Elizabeth H Kushner, Nicole Hendrix, Nailah Islam, Katherine Pickard
      Abstract: Autism, Ahead of Print.
      Naturalistic developmental behavioral interventions are an empirically supported intervention approach for young autistic children. Despite the prevalence of disruptive behaviors among autistic children, most manualized caregiver-mediated naturalistic developmental behavioral interventions include limited formal guidance on when and how to manage disruptive behavior. The present study sought to characterize how clinicians address disruptive behaviors within the caregiver-mediated naturalistic developmental behavioral intervention, Project ImPACT, the effect of disruptive behavior on Project ImPACT delivery, and the extent to which disruptive behavior impacts social communication outcomes. Data collection was embedded within outpatient early intervention services and included clinicians’ report of adaptations to address behavior within the electronic medical record, child social communication outcomes from 124 children and their caregivers, and interviews with certified Project ImPACT coaches and trainers. Results indicate that close to one-third of Project ImPACT sessions included adaptations made to address behavior and regulation. Furthermore, adaptations made to address disruptive behavior were associated with more adaptations to Project ImPACT overall, although behavior adaptations were not associated with child social communication outcomes. Qualitatively, clinicians described using a flexible approach to integrate content and coaching related to behavior and regulation. The present study indicates several future directions for supporting clinicians in addressing behavior and regulation within the naturalistic developmental behavioral intervention framework.Lay AbstractNaturalistic developmental behavioral interventions are a common and well-researched type of intervention for young autistic children that focus on supporting social communication. These interventions often do not include formal guidelines on how to address disruptive behaviors, even though they are common among autistic children. This study measured how often clinicians delivering a specific naturalistic developmental behavioral intervention, Project ImPACT, adapted how they delivered the program to address disruptive behavior, and how these adaptations related to children’s social communication outcomes at the end of their participation in the intervention. We also spoke with clinicians about how they address disruptive behavior and emotion regulation during their sessions. In this study, clinicians adapted Project ImPACT to address disruptive behaviors in about one-third of all sessions. These adaptations did not affect children’s social communication outcomes. Clinicians discussed how they felt social communication, disruptive behavior, and emotion regulation are linked to one another and that they often try to integrate intervention strategies to address each of these areas. However, they note that a clinicians’ approach to addressing disruptive behavior might vary depending on their level of training and experience. These results indicate several future directions for supporting clinicians in addressing behavior and regulation effectively within these types of interventions.
      Citation: Autism
      PubDate: 2023-10-16T04:37:33Z
      DOI: 10.1177/13623613231203308
       
  • App-based meditation habits maintain reductions in depression symptoms
           among autistic adults

    • Free pre-print version: Loading...

      Authors: Chad Stecher, Broc A Pagni, Sara Cloonan, Schuyler Vink, Ethan Hill, Destiny Ogbeama, Shanna Delaney, B Blair Braden
      Abstract: Autism, Ahead of Print.
      Mobile app-based meditation is an effective self-care solution for depression, but limited evidence exists for the long-term benefits among autistic adults, who are at increased risk of experiencing depression. The primary goal of this study was to examine the feasibility and effectiveness of incorporating habit training into an app-based meditation intervention to maintain reductions in depressive symptoms among autistic adults. Participants were randomized to an App Only (who only received access to the meditation app), App + Habit Training (who received the meditation app and instructions for anchoring their app-based meditation to an existing routine), or a waitlist control group. All participants completed questionnaires at baseline, post-intervention, and 6 months post-intervention, and responded to SMS ecological momentary assessments regarding their meditation practice during the 8-week intervention and an 8-week follow-up period. The results show that the App + Habit Training group reported significantly more days with meditation per week during and after the intervention (p 
      Citation: Autism
      PubDate: 2023-10-14T11:14:13Z
      DOI: 10.1177/13623613231200679
       
  • Mapping the link between socio-economic factors, autistic traits and
           mental health across different settings

    • Free pre-print version: Loading...

      Authors: Teresa Del Bianco, Georgia Lockwood Estrin, Julian Tillmann, Bethany F Oakley, Daisy Crawley, Antonia San José Cáceres, Hannah Hayward, Mandy Potter, Wendy Mackay, Petrusa Smit, Carlie du Plessis, Lucy Brink, Priscilla Springer, Hein Odendaal, Tony Charman, Tobias Banaschewski, Simon Baron-Cohen, Sven Bölte, Mark Johnson, Declan Murphy, Jan Buitelaar, Eva Loth, Emily JH Jones
      Abstract: Autism, Ahead of Print.
      Autistic individuals experience higher rates of externalising and internalising symptoms that may vary with environmental factors. However, there is limited research on variation across settings that may highlight common factors with globally generalisable effects. Data were taken from two cohorts: a multinational European sample (n = 764; 453 autistic; 311 non-autistic; 6–30 years), and a South African sample (n = 100 non-autistic; 3–11 years). An exploratory factor analysis aggregated clinical (Verbal Comprehension and Perceptual Index), adaptive traits (Vineland Adaptive Behaviour Scale) and socio-economic variables (parental employment and education, home and family characteristics) in each cohort separately. With regression, we investigated the effect of these factors and autistic traits on internalising and externalising scores (measured with the Strengths and Difficulties Questionnaire). Cohorts showed similar four-factor structures (Person Characteristics, Family System, Parental and Material Resources). The ‘Family System’ factor captured family size and maternal factors and was associated with lower internalising and externalising symptoms in both cohorts. In the European cohort, high autistic traits reduced this effect; the opposite was found in the South Africa cohort. Our exploratory findings from two separate analyses represent consistent evidence that Family System is associated with internalising and externalising symptoms, with a context-specific impact in persons with high autism traits.Lay AbstractAutistic individuals are more likely than non-autistic individuals to experience a mental health condition in their lifetime, and this includes externalising and internalising symptoms. We know very little about how different environments and family conditions impact these symptoms for autistic individuals. Improving our understanding of these relationships is important so that we can identify individuals who may be in greater need of support. In this article, we seek to improve our understanding of how environmental and family conditions impact externalising and internalising symptoms in autistic and non-autistic people. To do this, we conducted analyses with two cohorts in very different settings – in Europe and South Africa – to ensure our findings are globally representative. We used advanced statistical methods to establish environmental and family conditions that were similar to each other, and which could be combined into specific ‘factors’. We found that four similar ‘factors’ could be identified in the two cohorts. These were distinguished by personal characteristics and environmental conditions of individuals, and were named Person Characteristics, Family System, Parental and Material Resources. Interestingly, just ‘Family System’ was associated with internalising and externalising symptoms, and this was the same in both cohorts. We also found that having high traits of autism impacted this relationship between Family System and mental health conditions with opposite directions in the two settings. These results show that characteristics in the Family System are associated with internalising and externalising symptoms, and autistic persons are particularly impacted, reinforcing the notion that family stressors are important to consider when implementing policy and practice related to improving the mental health of autistic people.
      Citation: Autism
      PubDate: 2023-10-12T07:27:11Z
      DOI: 10.1177/13623613231200297
       
  • Differentiating early sensory profiles in toddlers at elevated likelihood
           of autism and association with later clinical outcome and diagnosis

    • Free pre-print version: Loading...

      Authors: Elena Maria Riboldi, Elena Capelli, Chiara Cantiani, Carolina Beretta, Massimo Molteni, Valentina Riva
      Abstract: Autism, Ahead of Print.
      Sensory features are included in the diagnostic criteria of autism spectrum disorder, and sensory responsiveness may produce “cascading effects” on later development. However, the relation between early sensory profiles and later skills has yet to be defined. This study aims to characterize sensory subgroups in 116 toddlers at elevated likelihood for autism spectrum disorder and test their association with later autistic traits and diagnosis. We used latent class analyses to assess individual differences across sensory patterns, grouping individuals with similar sensory profiles together. The final model was chosen based on a stepwise procedure, starting with a one-class solution, and then adds one class at a time. The Sensory Profile-2 Questionnaire measured clinical sensory features, and four sensory patterns were evaluated (seeking, avoiding, sensitivity, and registration). We investigated sensory subgroups concerning socio-communication skills and restricted/repetitive behaviors at 24 months and the clinical best-estimate diagnosis at 3 years. A three-class solution was favored, and toddlers can be characterized into three homogeneous sensory groups: low seeking, sensory balanced, and high sensitivity. The results showed that the high sensitivity group showed later socio-communicative difficulties and restricted/repetitive behaviors. Children in this class were those with the highest percentage of diagnosis at 3 years (57.9%). These findings provide new insights into the nature of sensory processing and may have implications for personalized support needs.Lay abstractEarly sensory responsiveness may produce cascading effects on later development, but the relation between sensory profiles and autistic diagnosis remains unclear. In a longitudinal sample of toddlers at elevated likelihood for autism, we aimed to characterize sensory subgroups and their association with clinical outcomes later on. Three sensory subgroups were described and early sensory sensitivity plays a significant role in later development and diagnosis. This study supported the importance of examining different levels of sensory patterns to dissect the phenotypic heterogeneity in sensory processing. As sensory differences are associated with later developmental outcomes, these results may be critical when designing intervention needs and support for children at increased likelihood for neurodevelopmental disorders.
      Citation: Autism
      PubDate: 2023-10-05T10:59:36Z
      DOI: 10.1177/13623613231200081
       
  • Autistic adults’ experiences of financial wellbeing: Part II

    • Free pre-print version: Loading...

      Authors: Elizabeth Pellicano, Gabrielle Hall, Ru Ying Cai
      Abstract: Autism, Ahead of Print.
      Financial wellbeing is an important component of people’s overall wellbeing, reflecting the capacity to live a comfortable and fulfilling life. Yet virtually nothing is known about this topic for autistic people. This study addressed this gap using a two-phase sequential mixed-methods design. Here, we report on findings from the Phase 2 qualitative study. In this study, 21 autistic participants were purposively selected based on the status of their financial wellbeing, including 12 people with high, and 9 with low, financial wellbeing, and interviewed by an autistic researcher. We identified four themes through reflective thematic analysis. Having access to a stable income made an enormous difference to people’s financial wellbeing. Participants emphasised how their broader social supports, especially family support, shaped their financial wellbeing. Yet, planning financially was often challenging, especially for people who had insufficient money to meet their basic needs. Nevertheless, our participants reported a strong drive to stay in control and avoid unnecessary risk. Our findings revealed how much money matters in autistic people’s lives. Future research should investigate the ways in which autistic people could secure more reliable incomes and identify the most effective ways to support them to achieve financial resilience.Lay abstractMoney matters in people’s lives. It helps to meet people’s basic needs (food, clothes, shelter) and live the lives they want to. When people talk about ‘financial wellbeing’, they mean how much you feel in control over day-to-day finances and how much freedom you have to make choices to enjoy life. We don’t know what autistic people think about these things. That’s why we did our study. We spoke to 21 autistic adults (24–69 years) about how they felt about their financial situation. We deliberately spoke to people who had told us previously they felt ‘financially well’ or ‘financially unwell’ so we could hear a range of opinions. Autistic people told us financial wellbeing meant having enough money to pay for their basics needs, to have a safety net for unexpected bills and not having to worry about money now or in the future. But many felt that good financial wellbeing was not possible for them. They often did not have a stable income to cover day-to-day expenses. This limited the choices they could make. Despite these challenges, autistic people told us they worked hard to budget and save money when they could – because feeling financial insecure was just too stressful, especially when they could not rely on family or friends for support. It made them feel mentally unwell. Our study shows there are many factors that influence autistic people’s financial wellbeing. We need more research to help us understand how autistic people can be supported to achieve financial security.
      Citation: Autism
      PubDate: 2023-10-05T09:16:53Z
      DOI: 10.1177/13623613231191594
       
  • ‘I live in extremes’: A qualitative investigation of Autistic
           adults’ experiences of inertial rest and motion

    • Free pre-print version: Loading...

      Authors: Hannah Rapaport, Hayley Clapham, Jon Adams, Wenn Lawson, Kaśka Porayska-Pomsta, Elizabeth Pellicano
      Abstract: Autism, Ahead of Print.
      ‘Autistic inertia’ is part of the Autistic community’s everyday lexicon, yet the condition has received scant attention in the academic literature. The little attention it has received has focused on the disabling impact of ‘inertial rest’ (difficulty initiating tasks), with minimal exploration of the potential benefits of inertial motion (difficulty stopping tasks). Here, we sought to investigate Autistic people’s phenomenological experiences of inertial rest and motion and to identify factors that might moderate Autistic inertia. Autistic and non-Autistic researchers conducted semi-structured interviews with 24 Autistic adults. We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. Interviewees spoke in-depth of their inertial ‘difficulties moving from one state to another’ and described how these challenges pervade ‘every single day’. While inertia was described as ‘the single most disabling part of being Autistic’, interviewees also described ways to respond to inertia, including taking pleasure in states of flow, whereby they could become completely absorbed in a task. While inertial difficulties are pervasive, our findings reveal the extreme nature of these task-switching difficulties for Autistic people. Our findings also contribute to a more holistic characterisation of inertia as both a disabling and enabling condition.Lay Abstract‘Autistic inertia’ is a term used by Autistic people to refer to difficulties with starting and stopping tasks. However, there has not been much research on Autistic inertia. The research that is available on Autistic inertia has mostly focused on the negative aspects of inertia, rather than on the possible benefits of needing to continue tasks. In this research, we wanted to understand more about Autistic people’s experiences of inertia and to work out what things might influence these experiences. Autistic and non-Autistic researchers spoke in-depth to 24 Autistic adults. We identified four key ideas from people’s responses. Autistic people spoke about their inertial ‘difficulties moving from one state to another’ and described how these challenges affected them ‘every single day’. While they experienced inertia as ‘the single most disabling part of being Autistic’, people also described the positive aspects of inertia, including the joy they felt when completely immersed in a task. Our Autistic participants emphasised that inertial difficulties are experienced by everyone, the intensity of these task-switching difficulties might be especially challenging for Autistic people. Our findings also reveal how Autistic inertia can be seen both as a disabling and as an enabling condition.
      Citation: Autism
      PubDate: 2023-09-30T07:04:07Z
      DOI: 10.1177/13623613231198916
       
  • Understanding the post-diagnostic support priorities of autistic adults in
           the United Kingdom: A co-produced modified Delphi study

    • Free pre-print version: Loading...

      Authors: Susanna Crowson, Daniel Poole, Kelly Scargill, Megan Freeth
      Abstract: Autism, Ahead of Print.
      Post-diagnostic support for autistic adults in the United Kingdom is geographically inequitable and, in general, considered inadequate. This results in autistic adults facing unnecessary challenges and wide-ranging poor outcomes. A modified Delphi study sought to establish autistic adults’ priorities for optimal provision of post-diagnostic support. The study was co-designed with 10 autistic adults across a series of three online workshops. Forty-three autistic adults, who had received their diagnosis in adulthood, completed a series of three online questionnaires through which 153 support priorities were identified. In a fourth questionnaire round, completed by 139 autistic adults, 24 priorities reached or exceeded a consensus threshold of 80% agreement that the item specified an important element of post-diagnostic support. Participants ranked access to support where they live, training of professionals, support to process the impact of a late diagnosis, use of their preferred mode of contact and an individualised support plan as their key priorities for post-diagnostic support. The whole priority list provides a clear and practical articulation of what autistic adults want from post-diagnostic support. This should be used by policymakers and service providers in the United Kingdom to ensure that post-diagnostic support for autistic adults is fit for purpose.Lay abstractAutistic adults in the United Kingdom report that support for themselves and their peers is not suitable for their needs. There has been an increase in adults receiving an autism diagnosis, which many have reported as having a positive impact on their lives. However, the lack of support and understanding after diagnosis, combined with long wait times for an assessment to obtain a diagnosis and to access follow-on support, is having a negative impact on people’s lives. This study took place to find out what support autistic people need and want after receiving their diagnosis. It was co-designed with a group of 10 autistic adults which means that the researchers and group members collaboratively designed the research. For the study, 43 autistic adults, diagnosed aged 18 or older, completed three questionnaires. A fourth questionnaire followed that was completed by 139 autistic people who received their diagnosis in adulthood. These questionnaires aimed to help people identify their own priorities when it came to the support they would have liked to receive after being given their autism diagnosis. Participants ranked access to support where they live, training of professionals, support to process the impact of a late diagnosis, use of their preferred mode of contact and a personalised support plan as their top priorities. This demonstrates that local support is highly valued by autistic adults, as are well-trained professionals who offer a range of contact options, support to process a late-in-life autism diagnosis and help to develop and implement support plans.
      Citation: Autism
      PubDate: 2023-09-30T07:00:32Z
      DOI: 10.1177/13623613231196805
       
  • Comparison of network structures between autistic and non-autistic adults,
           and autism subgroups: A focus on demographic, psychological, and lifestyle
           factors

    • Free pre-print version: Loading...

      Authors: Tulsi A Radhoe, Joost A Agelink van Rentergem, Carolien Torenvliet, Annabeth P Groenman, Wikke J van der Putten, Hilde M Geurts
      Abstract: Autism, Ahead of Print.
      Differences in (autism) characteristics are often reported between autistic and non-autistic adults but also between autistic adults. We aimed to determine whether mean differences correspond to differences in network structure of these characteristics in (1) autistic and non-autistic adults and (2) two previously identified autism subgroups. A total of 16 network variables related to demographic and psychological characteristics were included. First, Gaussian Graphical Models (GGMs) were used for network estimation in 261 autistic adults and 384 non-autistic comparisons aged 30–85 years. Second, we repeated this step within two previously identified autism subgroups (N1 = 124, N2 = 130). Third, sex differences were explored in the networks of the autism subgroups. The networks of the autism and comparison groups differed on individual edges and visual inspection, although the Network Comparison Test (NCT) showed no overall differences. The networks of autism subgroups were similar based on visual inspection and statistical comparisons. Sex did not impact the subgroup networks differently. Networks were more similar than different, but observed edge differences could be informative for targeted support. Focusing on mean differences is not sufficient to determine which factors (and associations) are important for autistic people. Thus, network analysis provides a valuable tool beyond assessing mean differences for autistic adults.Lay AbstractThere are large differences in the level of demographic, psychological, and lifestyle characteristics between autistic and non-autistic adults but also among autistic people. Our goal was to test whether these differences correspond to differences in underlying relationships between these characteristics—also referred to as network structure—to determine which characteristics (and relationships between them) are important. We tested differences in network structure in (1) autistic and non-autistic adults and (2) two previously identified subgroups of autistic adults. We showed that comparing networks of autistic and non-autistic adults provides subtle differences, whereas networks of the autism subgroups were similar. There were also no sex differences in the networks of the autism subgroups. Thus, the previously observed differences in the level of characteristics did not correspond to differences across subgroups in how these characteristics relate to one another (i.e. network structure). Consequently, a focus on differences in characteristics is not sufficient to determine which characteristics (and relationships between them) are of importance. Hence, network analysis provides a valuable tool beyond looking at (sub)group level differences. These results could provide hints for clinical practice, to eventually determine whether psychological distress, cognitive failures, and reduced quality of life in autistic adults can be addressed by tailored support. However, it is important that these results are first replicated before we move toward intervention or support.
      Citation: Autism
      PubDate: 2023-09-30T06:17:12Z
      DOI: 10.1177/13623613231198544
       
  • The impact of coping behaviors on perceived competence and social anxiety
           in the everyday social engagement of autistic adolescents

    • Free pre-print version: Loading...

      Authors: Yu-Wei Ryan Chen, Daphne Yih Ng, Mei-Hui Tseng, Anita Bundy, Reinie Cordier
      Abstract: Autism, Ahead of Print.
      Individuals who cope well with challenges may engage in social situations more successfully. We examined the association between coping behaviors, self-perceived competence, and social anxiety in everyday social situations. A total of 133 participants between the ages of 10 and 16 years (82 autistic, 51 neurotypical) carried a mobile device that prompted them seven times each day for 7 days to record what they were doing and their perceived competence and social anxiety in that situation. We used the Coping Inventory to measure overall coping abilities (i.e. coping with the self and the environment). Multilevel analyses found that autistic adolescents were more likely than neurotypical peers to experience social anxiety while engaged in maintenance or productive activities with adults. While their ability to cope with the self was positively associated with perceived social competence, it was negatively associated with the ability to cope with environmental challenges. Furthermore, autistic adolescents with poor ability to cope with environmental challenges were more likely than those who coped well to be socially anxious when engaged in leisure activities with peers. Findings from this study can guide evaluation and intervention to improve the social experiences of autistic adolescents by helping them increase coping skills.Lay abstractIndividuals who cope well with challenges may engage in social situations more successfully. We examined how well autistic adolescents coped, depending on how competent they felt and how much anxiety they experienced during social activities. We included 133 individuals (82 autistic, 51 neurotypical) between the ages of 10 and 16 years. Participants carried a mobile device that prompted them seven times a day for 7 days to record what they were doing, how competent they felt and how much anxiety they experienced. We used the Coping Inventory to understand how well participants coped with environmental challenges and met their needs for growth. Autistic adolescents were more likely than neurotypical peers to feel anxious while doing activities with adults. Autistic adolescents who had more difficulty coping with challenges were more likely to feel anxious when doing leisure activities with peers. Interestingly, autistic adolescents who coped better with challenges tended to feel less competent in social situations. However, those better able to meet their needs for growth tended to perceive their social competence positively. These findings can help practitioners develop strategies and programs to reduce the negative social experiences of autistic adolescents by helping them cope better.
      Citation: Autism
      PubDate: 2023-09-30T06:14:12Z
      DOI: 10.1177/13623613231196773
       
  • Enhancing access to autism diagnostic services for children in the
           community

    • Free pre-print version: Loading...

      Authors: Melanie Penner, Meng-Chuan Lai
      Abstract: Autism, Ahead of Print.

      Citation: Autism
      PubDate: 2023-09-22T07:32:34Z
      DOI: 10.1177/13623613231201212
       
  • Social self-efficacy and mental well-being in autistic adults: Exploring
           the role of social identity

    • Free pre-print version: Loading...

      Authors: Lorna Camus, Gnanathusharan Rajendran, Mary Elizabeth Stewart
      Abstract: Autism, Ahead of Print.
      The double empathy problem proposes a lack of shared understanding between autistic and non-autistic people leads to interaction difficulties between them. Social self-efficacy (confidence in one’s social abilities) makes an important contribution to social interactions. Research has shown that autistic people show a social identity (one’s sense of self based on membership of social groups) with other autistic people, and this impacts positively on well-being. In addition, research shows that autistic people have a number of social identities. This study aims to understand whether social self-efficacy relates to mental well-being in autistic adults, and whether social identity plays a role in this relationship. A total of 512 autistic adults completed measures of social self-efficacy, social identity, mental well-being and autistic traits. In-group social self-efficacy was found to be higher than out-group social self-efficacy. Second, in-group social self-efficacy was positively associated with well-being. Finally, social identity did not mediate the relationships between social self-efficacy and mental well-being. These findings suggest social self-efficacy may relate to the nature of the group one interacts with. The findings support further research into the relationship between social self-efficacy and well-being, as well as using the double empathy problem as a framework for further investigations in other social groups.Lay abstractIn the past, research has suggested that autistic people are not able to communicate well with non-autistic people because of autistic people’s communication difficulties. However, newer theories question this conclusion. It is now thought that the communication difficulties may be because autistic and non-autistic people both struggle to understand each other. This study explores how these differences in shared understanding relate to autistic people’s mental well-being, confidence in social situations and social identities (groups that we belong to and that influence how we see ourselves). We created an online survey taken by 512 autistic adults, which included questions about their confidence being social with people from different groups (such as other autistic people or people they share a hobby with), about the social groups they felt they belong to and about their mental well-being. First, participants reported higher social confidence when interacting with members of a social group they belonged to. Second, being confident during these interactions was linked to higher mental well-being. Finally, the groups participants belonged to did not influence the link between social confidence and mental well-being. These findings are important as they help us better understand autistic people’s experiences of social interactions and what contributes to good and poor mental well-being in autistic people. They also help us to think further about how to improve autistic people’s well-being.
      Citation: Autism
      PubDate: 2023-09-20T11:56:47Z
      DOI: 10.1177/13623613231195799
       
  • ‘It wasn’t the strategies on their own’: Exploring caregivers’
           experiences of accessing services in the development of interventions for
           autistic people with intellectual disability

    • Free pre-print version: Loading...

      Authors: Jessica Hughes, Ruth Roberts, Joanne Tarver, Cheryl Warters-Louth, Betty Zhang, Emma Southward, Rachel Shaw, Georgina Edwards, Jane Waite, Effie Pearson
      Abstract: Autism, Ahead of Print.
      Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers’ experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population.Lay AbstractMany autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to ‘fight’ for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families.
      Citation: Autism
      PubDate: 2023-09-15T12:21:16Z
      DOI: 10.1177/13623613231196084
       
  • Changes in the severity of autism symptom domains are related to mental
           health challenges during middle childhood

    • Free pre-print version: Loading...

      Authors: Einat Waizbard-Bartov, Emilio Ferrer, Brianna Heath, Derek S Andrews, Sally Rogers, Connor M Kerns, Christine Wu Nordahl, Marjorie Solomon, David G Amaral
      Abstract: Autism, Ahead of Print.
      Many autistic children experience changes in core symptom severity across middle childhood, when co-occurring mental health conditions emerge. We evaluated this relationship in 75 autistic children from 6 to 11 years old. Autism symptom severity change was evaluated for total autism symptoms using the autism diagnostic observation schedule calibrated severity score, as well as social-communication symptoms calibrated severity score, and restricted/repetitive behaviors calibrated severity score. Children were grouped based on their symptom severity change patterns. Mental health symptoms (attention-deficit hyperactivity disorder, anxiety, disruptive behavior problems) were assessed via parental interview and questionnaire and compared across the groups. Co-occurring mental health symptoms were more strongly associated with change in social-communication symptom or restricted/repetitive behavior severity than with total autism symptom severity. Two relevant groups were identified. The social-communication symptom-increasing-severity-group (21.3%) had elevated and increasing levels of anxiety, attention-deficit hyperactivity disorder, and disruptive behavior problems compared with children with stable social-communication symptom severity. The restricted/repetitive behavior-decreasing-severity-group (22.7%) had elevated and increasing levels of anxiety; 94% of these children met criteria for an anxiety disorder. Autism symptom severity change during middle childhood is associated with co-occurring mental health symptoms. Children that increase in social-communication symptom severity are also likely to demonstrate greater psychopathology, while decreases in restricted/repetitive behavior severity are associated with higher levels of anxiety.Lay abstractFor many autistic children, the severity of their autism symptoms changes during middle childhood. We studied whether these changes are associated with the emergence of other mental health challenges such as anxiety and attention-deficit hyperactivity disorder. Children who had increased social-communication challenges had more anxiety and attention-deficit hyperactivity disorder symptoms and disruptive behavior problems than other children. Children who decreased their restricted and repetitive behaviors, on the contrary, had more anxiety. We discuss why these changes in autism symptoms may lead to increases in other mental health concerns.
      Citation: Autism
      PubDate: 2023-09-11T05:54:11Z
      DOI: 10.1177/13623613231195108
       
  • Mental health counseling is rated as most helpful by autistic adults:
           Service perspectives in adulthood

    • Free pre-print version: Loading...

      Authors: Dara V Chan, Julie D Doran
      Abstract: Autism, Ahead of Print.
      The growing number of autistic adults challenges the limited adult service system. While data on service use and barriers are available, there is limited information from the individual’s perspective on which services are most helpful in adulthood and how service use is connected to community participation outcomes. Forty autistic adults participated in a study combining global positioning system community participation measures with survey and interview data on service use, including which services are most helpful in adulthood, barriers to services, and service needs. Participation outcomes were analyzed relative to demographics, number and types of services received in the past 2 years, and current mental health service use. Participants received an average of two services in the past 2 years, most frequently mental health and employment services. Individuals currently seeing a mental health counselor were more likely to be working full-time and visit more community locations compared to those who were not seeing a counselor. Participants reported mental health services as the most helpful service received in adulthood followed by employment services. While an emphasis is often placed on employment services in the transition to adulthood, findings suggest a need for integrated mental health and employment services for autistic adults.Lay AbstractThe number of autistic adults is growing, but there are fewer services to support them in adulthood. Many autistic adults need some support services to lead successful adult lives. We know a lot about the services autistic adults use and some of the problems with using these services, but we do not know which services are most helpful to them and how the services they use relate to how they interact with their communities. Forty autistic adults took part in a study about service use and community participation. They completed surveys, interviews, and carried a global positioning system tracker. They answered questions about which services are most helpful in adulthood, things that make it hard to use services, and what services they needed. Most participants used two services in the past 2 years, most frequently mental health and employment services. Adults who were currently seeing a mental health counselor were more likely to be working full-time and visit more locations in the community compared to those who were not seeing a counselor. Mental health services were reported as the most helpful service they received as adults, followed by employment services. We often focus on the importance of employment services after high school, but our findings show a need for both mental health and employment services for autistic adults.
      Citation: Autism
      PubDate: 2023-09-08T05:18:57Z
      DOI: 10.1177/13623613231197446
       
  • Enhancing stakeholder roles in autism early interventions in the United
           States: A stakeholder-driven research agenda

    • Free pre-print version: Loading...

      Authors: Katherine M Walton, Alayna R Borowy, Rachel A Gordon, Allison L Wainer
      Abstract: Autism, Ahead of Print.
      This article outlines a stakeholder-created research agenda to guide future early intervention research for autistic children. We collaborated with 10 autism service providers, 10 parents of individuals with autism, and 10 autistic people across a total of 18 small group and 2 inter-group meetings occurring over 2 years. Together, we synthesized results from (1) these stakeholder workshops and (2) a survey completed by 237 autistic adults, autism providers, caregivers, and autism researchers in the United States. The finalized research agenda includes (1) Guiding Principles, (2) Research Priorities, and (3) Systems Implications. The full version of the early intervention autism research agenda is available in Supplemental Material. In this article, we summarize the main points of the research agenda and discuss unique themes highlighted by stakeholders in considering early autism intervention research. Finally, we highlight the need to include stakeholders in decision-making and consultant positions throughout the research process to align future work most directly and optimally with the goals and needs of the autism community. We have gathered guidance directly from our stakeholders and experiences with Project Stakeholders Engaging in Early Intervention Research (STEER) into a researcher workbook which we hope may facilitate these efforts. This workbook is available in Supplemental Material.Lay abstractIn this article, we outline a stakeholder-driven research agenda to guide future early intervention research for children with autism. Our research team collaborated with autism service providers, parents of individuals with autism, and autistic people to create this research agenda by (1) conducting workshops with community members and (2) distributing a survey to a larger number of community members around the country. The finalized research agenda includes (1) Guiding Principles for current and future research, (2) Research Priorities focused on early intervention for individuals with autism, and (3) Systems Implications to consider in future clinical, research, and policy efforts for early intervention. The full version of the research agenda is available in Supplemental Material. This article lists the main points of the research agenda and discusses unique themes highlighted by the community members. One main conclusion is that researchers need to include community members in decision-making and consultant positions throughout the research process to best meet the needs of the broader autism community. We have created a researcher workbook which we hope may facilitate these community consultation efforts. This workbook is available in Supplemental Material.
      Citation: Autism
      PubDate: 2023-09-08T05:16:17Z
      DOI: 10.1177/13623613231195743
       
  • ‘Let me tell you, I see echolalia as being a part of my son’s
           identity’: Exploring echolalia as an expression of neurodiversity from a
           parental perspective

    • Free pre-print version: Loading...

      Authors: Eli G Cohn, Matthew J Harrison, Keith R McVilly
      Abstract: Autism, Ahead of Print.
      Echolalia has been described as the repetition of words, phrases, songs or other more elaborate dialogues uttered by another person, which may be immediate or delayed (International Classification of Diseases, 11th Revision; Diagnostic and Statistical Manual of Mental Disorders, 5th ed.). Some classify echolalia as a communication impairment reflective of delay, while others consider it a restricted, repetitive pattern of behaviours, without meaningful communicative function. Little attention is given to the experiences of non-clinicians, such as parents or teachers who may hold valuable insights to further our understanding of this phenomenon. This study forms part of a larger programme of inquiry which interviewed parents (N = 133) about their experiences of their sons’ and daughters’ echolalia. Using hermeneutic phenomenological analysis in an abductive framework, we present a perspective of echolalia that has largely remained silent in literature: echolalia as an expression of neurodiversity. Participants push back against the status quo of intervention, reclaiming echolalia as being a part of their child’s identity. Participants want their children to not only enjoy their echolalia but to fully embrace it as being a part of their individual identity. We propose alternatives to a purely clinical perspective of echolalia; alternatives that may place the neurodiversity-affirmative perspectives of our participants in a co-existing tension with clinicians.Lay abstractEcholalia is a commonly found speech and language condition in autistic children. Children with echolalia repeat words and phrases they previously hear in place of proving a non-repetitive response. In research and when visiting speech and language services, one of the common goals is to modify these repetitions so that these children may, more socially, engage with their surrounding environment. In our research, we identified that not all parents want their children’s echolalia to be modified. Some parents want their child to be able to enjoy echolalia and others don’t want anyone to intervene because they see it as something that makes their child unique and being unique is something to be celebrated. We believe that there might be a way for speech and language services who want to modify echolalia and the parents in our study who do not want their child’s echolalia to be modified, to be able to exist side-by-side.
      Citation: Autism
      PubDate: 2023-09-07T05:53:03Z
      DOI: 10.1177/13623613231195795
       
  • Predicting the financial wellbeing of autistic adults: Part I

    • Free pre-print version: Loading...

      Authors: Ru Ying Cai, Gabrielle Hall, Elizabeth Pellicano
      Abstract: Autism, Ahead of Print.
      Many autistic adults are likely to experience poor financial wellbeing and hardship due to unemployment and under-employment. Research in the general population demonstrates that subjective financial wellbeing—how people perceive their financial situation—influences quality of life. There is no research, however, examining the subjective financial wellbeing of autistic people. This study therefore aimed to (1) understand the subjective financial wellbeing of a sample of autistic adults living in Australia compared to a general Australian population sample and (2) identify the predictors of subjective financial wellbeing in this sample of autistic adults. To this end, 191 autistic adults aged 18–83 years (mean = 39.28, standard deviation = 11.74) completed an online survey about their economic status, financial wellbeing, financial behaviors, confidence in money management skills, and anxiety and depression symptoms. Almost half of our sample felt it was a struggle to make ends meet, whereas only one-third of the general Australian population felt this way. Similar to the general population, autistic people’s income and their financial behaviors (specifically, saving and not borrowing for everyday expenses) predicted their sense of financial wellbeing. Our findings have implications for both research and practice.Lay abstractResearchers have found the way people feel about their financial situation is related to their quality of life. We know that many autistic people find it hard to find a job. And for those autistic people who have a job, they are often underpaid. Not having a job or being underpaid often means having low income. Having low income is likely to influence how autistic people feel about their financial situation. However, no research has looked at these issues for autistic people. This is the first study that helps us learn more about what autistic adults think about their financial situation. We looked at autistic people’s thoughts on this issue compared to people from the general Australian population. We also looked at what things might impact how autistic people feel about their financial situation—which might be how much money they earn, what they do with that money, and their mental health. Many autistic adults felt they were struggling with financial wellbeing and this was connected both to the level of their income and how they said they managed their money. Those who were able to save and not borrow for everyday expenses reported feeling a greater sense of financial wellbeing. Concrete changes might help to improve autistic people’s financial wellbeing. We need to investigate how we can help autistic people find and keep well-paying jobs. And we need to work out the best ways of equipping autistic people with the skills they need in financial matters.
      Citation: Autism
      PubDate: 2023-09-04T11:01:11Z
      DOI: 10.1177/13623613231196085
       
  • Specific interests as a social boundary and bridge: A qualitative
           interview study with autistic individuals

    • Free pre-print version: Loading...

      Authors: Marie Lizon, Liesbeth Taels, Stijn Vanheule
      Abstract: Autism, Ahead of Print.
      Autistic individuals often experience challenges in social communication and interaction, and there is growing evidence that specific interests can help them regulate these difficulties. However, it is unclear what specific properties of these interests make them suitable for this role. In this qualitative study, we conducted semi-structured interviews with nine autistic individuals to explore the social functions of their specific interests. Data analysis followed Grounded Theory and Interpretative Phenomenological Analysis principles. Our analysis revealed that these interests have two important functions in social communication and interaction. On one hand, they provide a means of disconnecting from the often-distressing challenges in the social outside world. On the other hand, specific interests serve as a social compass: they provide structure and meaning to social reality, can foster a sense of connection with others, and provide an entryway for social participation. Based on these findings, we propose a conceptual model suggesting that specific interests enhance the experience of a psychological boundary between oneself and others, which contributes to a sense of safety during social interactions. Our study suggests that incorporating specific interests into therapeutic interventions can improve the social communication and interaction of autistic individuals, without losing sight of their personal well-being.Lay abstractGrowing evidence shows that specific interests can help autistic individuals cope with difficulties in social communication and interaction. However, it is unclear which specific characteristics of these interests make them suitable for this coping role. Therefore, this study explored how specific interests can help autistic individuals navigate social communication and interaction. We conducted semi-structured interviews with nine autistic individuals to inquire about their perspectives on the meanings and functions of their specific interest in their (social) life. We found that specific interests served two important social functions. First, the interests provided a way to disconnect from the challenging outside world, through a shift in the attentional focus of participants. Second, the interests served as a “social compass,” providing structure and meaning to social situations and helping the participants feel more connected to others. Based on these findings, we propose a conceptual model suggesting that specific interests create the experience of a “protective boundary” between oneself and others, which helps autistic individuals feel safe during social interactions. Namely, engaging in specific interests not only creates a space where autistic individuals can retreat when they feel overwhelmed, but also provides a framework with delineations in time and space, as well as explicit rules for social interactions, which make them more predictable and regulated. The study suggests that incorporating specific interests into therapy can help improve social communication and interaction for autistic individuals while still prioritizing their personal well-being.
      Citation: Autism
      PubDate: 2023-09-04T10:54:31Z
      DOI: 10.1177/13623613231193532
       
  • Maternal obesity and diabetes during pregnancy and early autism screening
           score at well-child visits in standard clinical practice

    • Free pre-print version: Loading...

      Authors: Sarah A Carter, Jane C Lin, Ting Chow, Mayra P Martinez, Jasmin M Alves, Klara R Feldman, Chunyuan Qiu, Kathleen A Page, Rob McConnell, Anny H Xiang
      Abstract: Autism, Ahead of Print.
      Early intervention can reduce disability in children diagnosed with autism spectrum disorder. Screening for autism spectrum disorder in young children identifies those at increased likelihood of diagnosis who may need further support. This study assessed in utero exposure to maternal obesity and diabetes and offspring performance on the Quantitative Checklist for Autism in Toddlers, an autism spectrum disorder screening questionnaire administered between 18 and 24 months at well-child visits. This retrospective cohort study included 65,433 singletons born in a single healthcare system. Demographic data, maternal obesity, Type 1/Type 2 and gestational diabetes mellitus information, and Quantitative Checklist for Autism in Toddlers score in children 12–30 months old were extracted from electronic medical records. Negative binomial models were used to estimate incidence rate ratios of associations between maternal obesity and diabetes exposure and continuous offspring Quantitative Checklist for Autism in Toddlers scores. Maternal obesity, Type 1/Type 2 diabetes (incidence rate ratio: 1.13, 1.06–1.21) and gestational diabetes mellitus ⩽ 26 weeks (incidence rate ratio: 1.10, 1.05–1.17) were associated with one-unit increases in Quantitative Checklist for Autism in Toddlers scores. Relationships with obesity and gestational diabetes mellitus ⩽ 26 weeks remained after mutual adjustment and excluding children with autism spectrum disorder diagnoses. No associations were reported for gestational diabetes mellitus > 26 weeks. Maternal obesity and diabetes were associated with higher Quantitative Checklist for Autism in Toddlers scores in children 12–30 months old, suggesting these exposures in pregnancy may be associated with a range of early childhood behavior.Lay AbstractEarly intervention and treatment can help reduce disability in children diagnosed with autism spectrum disorder. Screening for autism spectrum disorder in young children identifies those at increased likelihood of diagnosis who may need further support. Previous research has reported that exposure to maternal obesity and diabetes during pregnancy is associated with higher likelihood of autism spectrum disorder diagnosis in children. However, little is known about whether these maternal conditions are associated with how very young children score on autism spectrum disorder screening tools. This study examined associations between exposure to maternal obesity and diabetes during pregnancy and offspring scores on the Quantitative Checklist for Autism in Toddlers, an autism spectrum disorder screening questionnaire administered between 18–24 months at well-child visits. A higher score on the Quantitative Checklist for Autism in Toddlers suggests a higher likelihood of autism spectrum disorder; children with scores 3 or greater are referred to developmental pediatricians for evaluation. Our study found that children of mothers with obesity or diabetes during pregnancy had higher scores than children whose mothers did not have these conditions. Associations with maternal obesity and gestational diabetes diagnosed at or before 26 weeks of pregnancy were also present in children who did not have later autism spectrum disorder diagnoses, suggesting that exposure to these conditions during early pregnancy may be associated with a broad range of social and behavioral abilities. Identifying associations between maternal health conditions and early Quantitative Checklist for Autism in Toddlers screening scores could influence future screening and provision of support for children of mothers with these conditions.
      Citation: Autism
      PubDate: 2023-08-30T11:59:17Z
      DOI: 10.1177/13623613231188876
       
  • Digital citizenship of children and youth with autism: Developing
           guidelines and strategies for caregivers and clinicians to support healthy
           use of screens

    • Free pre-print version: Loading...

      Authors: Yael Mayer, Mor Cohen-Eilig, Janice Chan, Natasha Kuzyk, Armansa Glodjo, Tal Jarus
      Abstract: Autism, Ahead of Print.
      Over the past few years, screen-based usage among children and youth has increased significantly, particularly among those with autism. Yet current screen time guidelines do not address the specific needs of autistic children and youth. Therefore, the objective of this study was to develop specific and clear guidelines and strategies that caregivers and expert clinicians agree upon to support the digital citizenship of children with autism. Using the Delphi method, 30 experts, including 20 clinicians and 10 caregivers, were invited to complete a series of three surveys. The experts had to rate their agreement levels on a series of statements that included possible guidelines and strategies. The final statements to be included in the guidelines were accepted by more than 75% of the panel. The final guidelines included six sections: (1) general principles, (2) considerations for timing and content of leisure screen time use, (3) strategies for caregivers and clinicians to monitor and regulate screen time use, (4) behaviors to monitor for screen time overuse, (5) additional guidelines for clinicians, and (6) resources. The agreed-upon guidelines developed in this study could be the stepping stones for clinical interventions targeting screen time overuse of children with autism, addressing the screen time challenges that many families are experiencing.Lay AbstractChildren and youth with autism use screens in their daily lives and in their rehabilitation programs. Although parents and clinicians experience specific challenges when supporting positive screen time use of children and youth with autism, no detailed information for this group exists. Therefore, this study aimed to develop clear guidelines that are agreed by expert clinicians and parents of children and youth with autism. Using a method called Delphi, 30 experts—20 clinicians and 10 caregivers, who have experience working with or caring for children and youth with autism were invited to complete a series of three surveys. In each round, the experts had to rate their agreement with statements regarding screen time management. The agreement level was set to 75%. The final themes to be included in the guidelines were accepted by more than 75% of the panel. The final guidelines included six main sections: (1) general principles, (2) considerations for timing and content of leisure screen time use, (3) strategies for caregivers and clinicians to monitor and regulate screen time use, (4) behaviors to monitor for screen time overuse, (5) additional guidelines for clinicians, and (6) resources. The new guidelines developed in this study can provide potential guidance on how to further the development of digital citizenship for children and youth with autism and provide strategies to families to help manage screen time use.
      Citation: Autism
      PubDate: 2023-08-24T12:41:35Z
      DOI: 10.1177/13623613231192870
       
  • Using adaptive behavior scores to convey level of functioning in children
           with autism spectrum disorder: Evidence from the Study to Explore Early
           Development

    • Free pre-print version: Loading...

      Authors: Sarah M Furnier, Susan Ellis Weismer, Eric Rubenstein, Ronald Gangnon, Steven Rosenberg, Cy Nadler, Lisa D Wiggins, Maureen S Durkin
      Abstract: Autism, Ahead of Print.
      We examined relationships between measures of adaptive behavior, cognitive ability, and autism symptom severity in 1458 preschool-aged children with autism from the Study to Explore Early Development. While publications commonly describe autistic children as “low-” or “high-functioning” based on cognitive ability, relying solely on cognitive scores may obscure meaningful variation in functioning. We found significant heterogeneity in adaptive behavior scores of children with cognitive scores both above and below the threshold of two or more standard deviations below the population mean specified in the diagnostic criteria for intellectual disability (ID). Although cognitive and adaptive behavior scores were strongly associated in our sample, considerable variation in overall adaptive behavior and more than half in socialization and motor skills was unaccounted for by cognitive ability, autism symptom severity, and other covariates. Among children who could be designated “low-functioning” based on cognitive scores, 39.7% had composite adaptive behavior scores indicating no significant delays, while among those who might be designated “high-functioning,” 9.0% had significant delays in overall adaptive behavior and 22.2% in socialization. These results suggest adaptive behavior scores capture variations in the autism phenotype not accounted for by other measures we considered.Lay AbstractAutistic people are often described as “low-” or “high-functioning” based on their scores on cognitive tests. These terms are common in publications and in everyday communication. However, recent research and feedback from the autistic community suggests that relying on cognitive ability alone to describe functioning may miss meaningful differences in the abilities of autistic children and adults and in the kinds of support they may need. Additional methods are needed to describe “functioning” in autistic children. We examined whether scores from a test measuring adaptive behaviors would provide information on the functional abilities of children with autism that is different from cognitive ability and autism symptom severity. Adaptive behaviors include age-appropriate skills that allow people to function in their everyday lives and social interactions. We found that a large amount of the variation in adaptive behavior scores was not explained by cognitive development, autism symptom severity, and behavioral and emotional problems. In addition, there was a wide range of adaptive ability levels in children with autism in our study, including in those with low, average, or high cognitive scores. Our results suggest that adaptive behavior scores could provide useful information about the strengths and support needs of autistic children above and beyond measures of cognitive ability and autism symptom severity. Adaptive behavior scores provide important information on the needs of autistic people.
      Citation: Autism
      PubDate: 2023-08-23T09:43:11Z
      DOI: 10.1177/13623613231193194
       
  • Post-traumatic stress disorder and experiences involving violence or
           sexual abuse in a clinical sample of autistic adults with intellectual
           disabilities: Prevalence and clinical correlates

    • Free pre-print version: Loading...

      Authors: Arvid Nikolai Kildahl, Sissel Berge Helverschou
      Abstract: Autism, Ahead of Print.
      Autistic people appear to be at increased risk of post-traumatic stress disorder, and experiences involving violence or sexual abuse appear to be common in this population. However, knowledge concerning trauma in autistic people with co-occurring intellectual disabilities is limited. In this cross-sectional study, we explored the prevalence of post-traumatic stress disorder, as well as the prevalence and clinical correlates of reported experiences of violence and sexual abuse, in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only three participants (3.4%) were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of ‘challenging’ behaviours (Aberrant Behaviour Checklist). These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population.Lay abstractPost-traumatic stress disorder is a mental health disorder that may be triggered by the experience of events perceived as terrifying or overwhelming. Examples of such events include being the victim of violence or sexual abuse. Compared with other people, autistic people have increased risk of being exposed to violence or sexual abuse. In addition, autistic people may be more vulnerable to developing post-traumatic stress disorder following such exposure. However, knowledge is limited concerning the prevalence of experiences involving violence and sexual abuse, and post-traumatic stress disorder, in autistic people with co-occurring intellectual disabilities. Detection of these experiences, and identification of post-traumatic stress disorder, may be challenging in these individuals, and previous research indicates that post-traumatic stress disorder symptoms may be overlooked or misinterpreted. In this study, we examined prevalence of post-traumatic stress disorder, violence and sexual abuse in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only 3.4% were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of ‘challenging’ behaviours. These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment, and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population.
      Citation: Autism
      PubDate: 2023-08-23T09:32:11Z
      DOI: 10.1177/13623613231190948
       
  • Autistic adults show enhanced generosity to socially distant others

    • Free pre-print version: Loading...

      Authors: Paul AG Forbes, Irini Chaliani, Leonhard Schilbach, Tobias Kalenscher
      Abstract: Autism, Ahead of Print.
      Sharing resources is fundamental for human cooperation and survival. People tend to share resources more with individuals they feel close to compared to those who are more socially distant. This decline in generosity at increasing social distance is called social discounting and is influenced by both social traits and abilities, such as empathy, and non-social psychological factors, such as decision-making biases. People who receive a diagnosis of autism show differences in social interaction as well as displaying differences in non-social domains, such as more restricted and repetitive behaviours. We investigated social discounting in autism and found that autistic adults were more generous than neurotypical participants, which was driven by greater generosity to socially distant others. Crucially, we also investigated framing effects during prosocial decision-making. Autistic participants were less susceptible to whether decisions were framed as causing monetary gains, compared to preventing monetary losses, for the potential recipient. Our results support the view of ‘enhanced rationality’ in autism as participants’ prosocial decisions were less influenced by potential biasing information, such as the closeness of the recipient or how choices were framed. Therefore, the differences seen in autism, as well as posing certain challenges, can also have prosocial consequences.Lay abstractAutistic people show differences in their social behaviour. But how autism affects decisions to share resources, an important part of cooperation, was previously unclear. In our study, participants made decisions about how to share money with different people, including people they felt close to, such as a friend, and people they felt less close to, such as a stranger. We found that compared to a group of non-autistic participants, autistic adults shared more money overall and this was driven by greater generosity to strangers. The results suggest that autistic adults were more generous because they made fair decisions (an equal split of the money) more consistently regardless of how close they felt to the person they were sharing with. By showing that autistic adults display greater generosity, our results could help to change public perceptions of autism and potentially improve opportunities for autistic people.
      Citation: Autism
      PubDate: 2023-08-22T11:50:11Z
      DOI: 10.1177/13623613231190674
       
  • ‘Most people have no idea what autism is’: Unpacking autism disclosure
           using social media analysis

    • Free pre-print version: Loading...

      Authors: Chris Edwards, Abigail M A Love, Sandra C Jones, Ru Ying Cai, Boyd Thai Hoang Nguyen, Vicki Gibbs
      Abstract: Autism, Ahead of Print.
      Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020−2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society’s lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody’s responsibility to challenge negative stereotypes and promote a more inclusive society.Lay abstractAutism disclosure – that is sharing their autism diagnosis or identity with a person or people – is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to.
      Citation: Autism
      PubDate: 2023-08-22T11:43:57Z
      DOI: 10.1177/13623613231192133
       
  • A comparison of the presentations of males and females with autism
           spectrum disorder and those narrowly below the diagnostic threshold

    • Free pre-print version: Loading...

      Authors: Joanna M Tsirgiotis, Robyn L Young, Nathan Weber
      Abstract: Autism, Ahead of Print.
      Little is currently known about the autism spectrum disorder (ASD)-related difficulties of females narrowly below the ASD diagnostic threshold and whether the disorder conceptualisation should be broadened to capture their presentations. We extracted fine-grained information from the assessment reports of 222 children who were either diagnosed with ASD (n = 156) or not diagnosed despite many ASD traits (n = 78). Females were less likely than males to meet Criterion B3 (restricted interests), and this was especially the case for subclinical (non-ASD) females. Non-ASD females lacked sufficient atypicality for diagnosis in several key domains, particularly Criterion A1 (social-emotional reciprocity). Evidence of sex/gender1-specific restricted interests and stereotypical behaviours was found. Many behaviours differed in the extent to which they predicted the ASD diagnostic result for males and females, perhaps suggesting that sex/gender influences how ASD-related behaviours are perceived. We discuss these findings in the context of underdiagnosis of ASD in females and propose adjustments to assessment protocols.Lay AbstractMost research about autism spectrum disorder (ASD) in females has looked at autistic features in people who have already received diagnoses. Because our understanding of ASD has been shaped by the difficulties of males, females may experience different difficulties and may not meet the criteria for diagnosis because of a skewed concept of ASD. We extracted detailed information from the assessment reports of 222 children who were either diagnosed with ASD (156 children) or not diagnosed despite many ASD traits (78 children). Females were less likely to have restricted interests, especially females who did not receive an ASD diagnosis. Females who did not receive an ASD diagnosis tended to show more ability in social and emotional reciprocity than what would qualify them for a diagnosis. We also found sex-/gender-specific profiles of body use and speech mannerisms. Many behaviours were more closely linked with an ASD diagnosis for males and others for females, suggesting that behaviours may be interpreted differently depending on the child’s sex/gender. We discuss implications for assessing females for ASD in the context of this evidence.
      Citation: Autism
      PubDate: 2023-08-22T11:41:56Z
      DOI: 10.1177/13623613231190682
       
  • Oral health-care practices and dental assistance management strategies for
           people with autism spectrum disorder: An integrative literature review

    • Free pre-print version: Loading...

      Authors: Nadson Soares Pimentel Júnior, Sandra Garrido de Barros, Ednaldo de Jesus Filho, Maria Isabel Pereira Vianna, Carla Maria Lima Santos, Maria Cristina Teixeira Cangussu
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder requires a careful approach from professionals and a favorable clinical environment for dental care and assistance. This article aims To perform a literature review about oral health among people with autism spectrum disorder and dental management strategies for this group. An integrative literature review was carried out in three databases, associating the descriptors: (autism or autism spectrum disorder) with (oral health or oral diseases) and (dental care or dental services). After identification and screening steps, 32 articles were included in the study. The most prevalent subjects were oral health conditions, parents’ understanding and practical attitudes about oral health, treatment and management strategies, and the use of technology. The principal barriers to dental care were the scarcity of specialized professionals, unpreparedness in the referral system, poor accessibility of the clinics, and lack of specific care protocols. The world literature on the subject is scarce, and there is still a need for investment and scientific production due to the incidence of autism in the world population and the maintenance of difficulties and barriers in offering quality health care to this group.Lay abstractAutism spectrum disorder requires a more careful approach from oral health professionals and a favorable clinical environment related to dental care and assistance. This article has the objective to perform a literature review about the oral health-care knowledge and practices in people with autism spectrum disorder, as well as the characteristics of dental care for this group. It was carried out in three articles databases, associating descriptors such as autism or autism spectrum disorder; oral health or oral diseases; dental care or dental services. We identified 32 articles. The most prevalent subjects were oral health conditions, treatment strategies, parents’ understanding and practical attitudes about oral health, management, and use of technology to improve oral health care. The principal barriers to people with autism spectrum disorder to access dental care were the scarcity of specialized professionals, unpreparedness in the referral system, poor accessibility of the clinics, and lack of specific care protocols. The world literature on the subject is scarce, and there is still a need for investment and scientific production due to the incidence of autism in the world population and the maintenance of difficulties and barriers in offering quality health care to this group.
      Citation: Autism
      PubDate: 2023-08-22T08:58:54Z
      DOI: 10.1177/13623613231193529
       
  • Fewer children with autism spectrum disorder with motor challenges receive
           physical and recreational therapies compared to standard therapies: A
           SPARK data set analysis

    • Free pre-print version: Loading...

      Authors: Anjana N Bhat
      Abstract: Autism, Ahead of Print.
      Approximately 85% of children with autism spectrum disorder from the SPARK study receiving standard interventions such as speech-language and occupational therapies. In contrast, only 32%–13% of children with autism spectrum disorder received movement therapies such as physical and recreational therapies, respectively. Little is known about how service receipt changes as a function of children’s motor difficulties. Parents of children with autism spectrum disorder completed online surveys to provide a report of their child’s motor difficulties using the Developmental Coordination Disorder–Questionnaire as well as the various therapies their child received (speech-language therapy, occupational therapy, physical therapy, applied behavioral analysis, social skill interventions, recreational therapy) by location (at school, privately/in community, or both). While movement therapies (occupational therapy, physical therapy, recreational therapy) increased with increasing motor risk and severity, there continued to be large disparities in physical therapy (37%–55%) and recreational therapy (15%–19%) compared to occupational therapy (85%–92%) across various settings indicating clear unmet needs for specific motor services given that 88.3% of this sample of children with autism spectrum disorder is at risk for motor difficulties/Developmental Coordination Disorder. Developmental Coordination Disorder–Questionnaire fine- and gross-motor subscale scores were fairly comparably affected yet physical therapy/recreational therapy were less received versus occupational therapy. These findings explain the paucity of physical therapy/recreational therapy and physical activity programs for individuals with autism spectrum disorder and the need for movement experts to receive appropriate access and training to work with individuals with autism spectrum disorder.Lay AbstractThere are clear disparities in motor services provided to children with autism spectrum disorder (physical and recreational therapies) compared to their standard therapies (speech-language and occupational therapies). Children with autism spectrum disorder need greater access to and funding for motor services (physical and recreational therapies) and physical activity programs. Movement experts including PTs, adapted physical educators, and community exercise/sports coaches/professionals need basic, specialized, and continuing education training to meet the needs of children and adults with autism spectrum disorder not only for providing early developmental and school-based services but also for ensuring appropriate built environments and providing general physical therapy/adapted physical education services as well as physical activity programs.
      Citation: Autism
      PubDate: 2023-08-22T07:43:42Z
      DOI: 10.1177/13623613231193196
       
  • Autistic adults’ inclination to lie in everyday situations

    • Free pre-print version: Loading...

      Authors: Ralph Bagnall, Ailsa Russell, Mark Brosnan, Katie Maras
      Abstract: Autism, Ahead of Print.
      Autistic children and adolescents often have greater difficulty engaging in deception than their non-autistic peers. However, deception in autistic adulthood has received little attention to date. This study examined whether autistic and non-autistic adults differed in their inclination to lie in everyday situations and the factors that underpin this. Forty-one autistic and 41 non-autistic participants completed self-report measures relating to their inclination to lie, ability to lie and moral attitudes about the acceptability of lying. Participants also undertook a reaction-time test of lie-telling, as well as theory of mind and working memory measures. Autistic and non-autistic adults did not significantly differ in their inclination to lie in everyday situations. The degree to which lying was viewed as morally acceptable positively predicted both groups’ inclination to lie. The remaining factors underpinning the inclination to lie differed between groups. Lower self-rated lying ability and slower lie speed predicted a reduced inclination to lie in autistic participants, whereas higher theory of mind and working memory capacity predicted a reduced inclination to lie in the non-autistic group. Implications for our understanding of deception in autistic and non-autistic adults are discussed.Lay abstractDifferences in social communication and understanding others’ mental states may mean that autistic adults are less likely to deceive others than non-autistic individuals. We investigated whether autistic and non-autistic adults differ in their inclination to lie and which psychological factors are involved in the inclination to lie. We found that autistic and non-autistic groups reported a similar inclination to lie, and the extent to which participants viewed lying as acceptable helped to explain their inclination to deceive others. However, the other underlying psychological factors associated with deception inclination differed between autistic and non-autistic groups. Autistic adults’ belief about their ability to lie and also how quickly they could lie helped to explain whether they were more or less inclined to lie. For non-autistic adults, their memory and ability to understand others’ mental states helped to explain their lie inclination. We discuss these findings and recommend areas for future research.
      Citation: Autism
      PubDate: 2023-08-12T11:38:25Z
      DOI: 10.1177/13623613231183911
       
  • Comparative effects of mindfulness-based stress reduction and
           psychoeducational support on parenting stress in families of autistic
           preschoolers

    • Free pre-print version: Loading...

      Authors: Cameron L Neece, Rachel M Fenning, Holly ER Morrell, Laurel R Benjamin
      Abstract: Autism, Ahead of Print.
      Relative to parents of children with neurotypical development and other developmental disabilities, parents of autistic children experience higher levels of parenting stress, which are associated with deleterious consequences for parents’ mental and physical health and child functioning. Despite urgent calls to action, parenting stress is rarely addressed directly in interventions for families of autistic children, and less so in underserved and racial/ethnic minority populations where clinical needs are greater. This study tested the efficacy of mindfulness-based stress reduction, compared to a psychoeducation and support intervention, in reducing parenting stress among diverse families of autistic preschoolers. Participants (N = 117) were randomly assigned to the mindfulness-based stress reduction or psychoeducation and support groups; assessments were conducted at baseline, immediately postintervention, and 6 and 12 months postintervention. Results indicated significant reductions in parenting stress across both the mindfulness-based stress reduction and psychoeducation and support intervention conditions; however, reductions in parenting stress were greater for parents in mindfulness-based stress reduction than in psychoeducation and support. Furthermore, the benefit of mindfulness-based stress reduction relative to psychoeducation and support increased over time, with significant group differences in parenting stress detected at 12-month follow-up.Lay abstractParents of autistic children often experience high levels of parenting stress, which can have negative mental and physical effects on both the parent and child. This study tested the efficacy of mindfulness-based stress reduction in reducing parenting stress in parents of preschool-aged autistic children compared to a psychoeducation and support intervention. We assessed parenting stress before and after the interventions and at 6- and 12-month follow-up. Both interventions significantly decreased parenting stress, but mindfulness-based stress reduction reduced stress more than did psychoeducation and support, with the strongest effect observed 1 year later. This suggests that the stress-reducing benefits of mindfulness-based stress reduction persist and may increase over time.
      Citation: Autism
      PubDate: 2023-08-09T08:29:35Z
      DOI: 10.1177/13623613231191558
       
  • Development of oral health resources and a mobile app for caregivers and
           autistic children through consensus building

    • Free pre-print version: Loading...

      Authors: Bing Liang Tan, Rahul Nair, Mandeep Singh Duggal, Ramkumar Aishworiya, Huei Jinn Tong
      Abstract: Autism, Ahead of Print.
      This study aimed to (1) develop evidence-based resources and (2) test face, content validity, and usability of a newly developed mobile application (app) to equip and empower caregivers with resources and skills to promote better oral health for autistic children. A series of resources on oral health, including information on oral diseases and home care and social stories on dental visits were developed. Concurrently, an app was developed by dentists, occupational therapist and software developers. The resources underwent content validation by an international panel of paediatric dentists (Expert Working Group). Face validation of the resources and usability testing of the app by parents were then carried out. Validation and feedback were obtained by the Delphi method, with consensus set at 70% agreement. A total of 12 resources and 2 social stories were developed. Consensus was achieved among the Expert Working Group regarding the content and illustrations of the resources and social stories. Both the Expert Working Group and parents agreed that the resources were easy to read and understand. Parents also found the app easy to use, aesthetically pleasing and help them to better care for their child’s oral health.Lay AbstractCaregivers of autistic children often lack knowledge regarding oral homecare and when and where to see the dentist. To address this need, we developed a series of information on oral health. An autistic child assisted in developing two social stories to showcase a dental visit. A mobile app was developed to deliver the above mentioned. Other features include creation of customised social stories and visual schedule and an inbox to allow dentists to send messages to parents. The developed information and social stories were reviewed by experts and parents. The app also underwent anonymous and independent testing by parents. Overall the information and app were well received by the experts and parents.
      Citation: Autism
      PubDate: 2023-08-04T05:52:26Z
      DOI: 10.1177/13623613231188768
       
  • Short report: Recommendations for education, clinical practice, research,
           and policy on promoting well-being in autistic youth and adults through a
           positive focus on sexuality and gender diversity

    • Free pre-print version: Loading...

      Authors: Jeroen Dewinter, Morénike Giwa Onaiwu, Maria L Massolo, Reid Caplan, Els Van Beneden, Nikki Brörmann, Eileen T Crehan, Lisa A Croen, Susan Faja, Dena L Gassner, Laura Graham Holmes, Cat Hughes, Morrigan Hunter, Monique Huysamen, Paola Jelonche, Meng-Chuan Lai, Ilse Noens, Heta Pukki, Mark A Stokes, John F Strang, Anna IR van der Miesen
      Abstract: Autism, Ahead of Print.
      This short report presents recommendations to promote health and well-being relating to sexuality and gender diversity in autistic individuals. The recommendations were developed based on the latest available scientific knowledge coupled with a community-driven approach. An international group of autistic and non-autistic experts in the fields of autism, sexuality, and gender diversity and autistic advocates worked together to develop the initial recommendations; these recommendations were subsequently checked within the wider community through an online survey. Out of the original 11 recommendations, eight were rated above a consensus threshold. The final recommendations cover three themes: (1) providing education and information on sexuality, relationships, and gender diversity to autistic individuals and their families; (2) improving expertise in and accessibility to healthcare for sexuality, relationships, and gender-related questions, with specific attention to prevention of and support after sexual victimization; and (3) meaningful inclusion of the autism community in future research that addresses well-being related to sexuality, relationships, and gender diversity. The recommendations emphasize the need for additional awareness and offer cues to parents, professionals, and policymakers to promote sexual health and well-being of autistic individuals.Lay AbstractIn this article, we propose recommendations on what we can do to promote that autistic people can enjoy their sexuality and gender identity, because that contributes to overall well-being.First, we briefly summarize the existing research on sexuality and gender diversity in autistic individuals.Next, we propose recommendations for how to promote sexual and gender diversity-related health and well-being. Based on what is known about sexuality, gender diversity, and relationships in autistic adolescents and adults, we convened an international group of autistic and non-autistic researchers, advocates, parents, and professionals to develop recommendations to promote sexual and gender health in autistic people.The resulting recommendations were checked through an online survey distributed to autistic people across the world. The online participants endorsed the importance of eight final recommendations related to:1. Providing education and information on sexuality, relationships, and gender diversity to autistic individuals and their families;2. Improving expertise in and accessibility to healthcare for sexuality, relationships, and gender-related questions, with specific attention to prevention of and support after sexual victimization; and3. Meaningfully including the autism community in future research that addresses well-being relating to sexuality, relationships, and gender diversity.These community-driven recommendations aim to promote sexual health and well-being in autistic individuals internationally.
      Citation: Autism
      PubDate: 2023-08-02T11:02:07Z
      DOI: 10.1177/13623613231188349
       
  • Enhancing emotion recognition in young autistic children with or without
           attention-deficit/hyperactivity disorder in Hong Kong using a Chinese App
           version of The Transporters

    • Free pre-print version: Loading...

      Authors: Janice Ka-Yan Chan, Theodore Ching-Kong Cheung, Chi-Wai Chan, Fan Fang, Kelly Yee-Ching Lai, Xiang Sun, Helen O’Reilly, Ofer Golan, Carrie Allison, Simon Baron-Cohen, Patrick Wing-Leung Leung
      Abstract: Autism, Ahead of Print.
      The Transporters intervention contains 15 animated episodes that autistic children watch daily for a month and learn emotion recognition through stories depicting social interactions between vehicle characters with grafted human faces, expressing emotions. Its automated, home-based format is cost-effective. This study included four groups of young Chinese children in Hong Kong: two intervention groups (an autism intervention group and an autism + attention-deficit/hyperactivity disorder (ADHD) intervention group), an autism control group and a non-autistic group. The autism + ADHD intervention group was one that had not been separately examined before. In this study, The Transporters episodes were delivered via an App instead of the dated DVD technology. Following The Transporters intervention, both autism and autism + ADHD intervention groups improved significantly and similarly on emotion recognition and were more like the non-autistic group, while the autism control group did not. Learning was generalizable to novel situations/characters. There was no dosage effect, with the standard recommended number of episodes viewed as sufficient for significant improvement. Besides confirming the effectiveness of The Transporters for young Chinese autistic children, this study contributes to the literature/practice by expanding the range of applicability of The Transporters to autistic children with ADHD, which is important given the high co-occurrence rate between autism and ADHD.Trial Registration:This study was registered with the German Clinical Trials Register – Deutschen Register Klinischer Studien (DRKS) on 23 December 2018. The Trial Registration Number (TRN) is DRKS00016506.Lay AbstractThe Transporters App is an intervention programme with 15 animated episodes that teach emotion recognition skills to autistic children between 4 and 6 years of age. Each episode contains a story depicting social interactions between characters in the form of a vehicle, with human faces grafted on to each of them. Each episode teaches a specific emotion in a story context. Autistic children watched at least three episodes at home for about 15 min daily for a month, with parental guidance. Its automated, home-based format is cost-saving and readily accessible. This study translated The Transporters to a Cantonese-Chinese version. Results showed a significant improvement in emotion recognition following viewing The Transporters in a group of Hong Kong Chinese autistic children, between 4 and 6 years of age, with and without attention-deficit/hyperactivity disorder (n = 48) relative to a control group (n = 24). A non-autistic group (n = 23) showed that the autistic children scored lower in emotion recognition pre-intervention. Post-intervention, the autistic children had improved in emotion recognition to the level of the non-autistic children. The autistic children in the intervention groups also generalized their learning to novel situations/characters not taught within The Transporters. There was no dosage effect, with the standard recommended number of episodes viewed being sufficient to achieve significant improvement. This study confirms the effectiveness of The Transporters for Chinese autistic children and contributes to the literature/practice by expanding the range of applicability of The Transporters to autistic children with attention-deficit/hyperactivity disorder, which is important given the high rate of co-occurrence between autism and attention-deficit/hyperactivity disorder.
      Citation: Autism
      PubDate: 2023-07-31T12:34:00Z
      DOI: 10.1177/13623613231187176
       
  • Magnitude representation of preschool children with autism spectrum
           condition

    • Free pre-print version: Loading...

      Authors: Xueyan Li, Jiaxi Li, Sijia Zhao, Yini Liao, Liqi Zhu, Yi Mou
      Abstract: Autism, Ahead of Print.
      The mathematical abilities of children with autism spectrum condition have been understudied. Magnitude representation is a fundamental numerical ability that emerges early in development and is linked to children’s learning of formal mathematics. It remains unclear about whether children with autism spectrum condition differ from their peers without autism spectrum condition in the precision of magnitude representations. This study recruited preschool-aged children with autism spectrum condition (N = 70; 64 boys, Mage = 5.20 years) and without autism spectrum condition (N = 117; 63 boys, Mage = 5.11 years), and tested their precision of magnitude representation with an approximate number comparison task (dot comparison). Children with autism spectrum condition exhibited the lower numerical comparison accuracy (i.e. the weaker magnitude representation) than their peers without autism spectrum condition, regardless of the congruency between numerosity and surface area of dots. Moreover, the lower numerical comparison accuracy was observed even controlling for multiple general cognitive abilities (working memory, inhibitory control, and nonverbal intelligence) and language abilities. In addition, the variability of the comparison accuracy was larger in children with autism spectrum condition than without autism spectrum condition. These findings suggest that children with autism spectrum condition are at risk of weaker magnitude representation from an early age, emphasizing the need for specialized mathematics education or interventions to support their learning.Lay abstractThe mathematical abilities of children with autism spectrum condition have been understudied. Magnitude representation (e.g. presenting the number of a collection of objects) is a fundamental numerical ability presented since early infancy and is correlated with children’s later learning of formal mathematics. It remains unclear about whether children with autism spectrum condition differ from their peers without autism spectrum condition in precision of magnitude representations. This study compared preschool children with and without autism spectrum condition in their precision of magnitude representation with an approximate number comparison task, in which children compared two sets of dots without counting and chose the set with more dots. Children with autism spectrum condition exhibited the lower numerical comparison accuracy (i.e. the weaker magnitude representation) than their peers without autism spectrum condition. This difference existed even when multiple general cognitive abilities (working memory, inhibitory control, and nonverbal intelligence) and language abilities were statistically controlled. Moreover, the individual difference of the numerical comparison accuracy was larger in children with autism spectrum condition than without autism spectrum condition. These findings suggest that children with autism spectrum condition are at risk of weaker magnitude representation from an early age, emphasizing the need for specialized mathematics education or interventions to support their learning. In addition, the large variance in the precision of their magnitude representation suggests that individualized mathematics interventions are needed for children with autism spectrum condition.
      Citation: Autism
      PubDate: 2023-07-31T12:31:00Z
      DOI: 10.1177/13623613231185408
       
  • The mediators for the link between autism and real-world executive
           functions in adolescence and young adulthood

    • Free pre-print version: Loading...

      Authors: Yi-Ling Chien, Yueh-Ming Tai, Yen-Nan Chiu, Wen-Che Tsai, Susan Shur-Fen Gau
      Abstract: Autism, Ahead of Print.
      The mediators of real-world executive functions in autism during the transition into adulthood are mainly unknown. This study aimed to identify the mediators for the behavioral and cognitive domains of real-world executive functions in late adolescent and young adult autistic populations. We followed up 289 autistic children (aged 11.6 ± 3.8, male 82.2%) and 203 non-autistic controls (10.7 ± 2.9, 66.5%) to their ages of 16.9 ± 4.7 and 15.8 ± 3.9, respectively. The Behavior Rating Inventory of Executive Function, comprising two global scales (Behavioral Regulation Index and the Metacognitive Index), was used to assess real-world executive functions at Time 2. Mediators of behavior regulation and metacognition were explored among a wide range of clinical correlates and parental bonding. We found that the autistic group had lower executive functions than the non-autistic group with lower behavior regulation and metacognition subscores. Several childhood factors were significant mediators. Multiple mediation analyses revealed that childhood inattention remained a significant mediator for both behavior regulation and metacognition in late adolescence, and peer problems were the specific mediators of metacognition. Our findings suggest several childhood factors may mediate real-world executive functions during late adolescence. Treating common mediators such as inattention may improve real-world executive functions in autistic individuals during adulthood.Lay abstractChildhood factors that predict real-world executive function in autism spectrum disorder during the transition into adulthood are largely unknown. This study aimed to identify the predictors for the behavioral and cognitive aspects of real-world executive function in late adolescent and young adult autistic populations. We followed up 289 autistic youth (mean age 11.6 years) and 203 non-autistic controls (10.7 years) to their ages of 16.9 and 15.8, respectively. The Behavior Rating Inventory of Executive Function scale was used to measure the real-world executive function at late adolescence and young adulthood at follow-up. Potential predictors such as autistic symptoms, inattention or hyperactivity symptoms, peer relationship, emotional symptoms, and parenting styles were assessed in childhood at first enrollment. The results showed that childhood inattention, withdrawn behaviors, social communication difficulties, and child-reported emotion and inattention/hyperactivity may predict real-world lower executive function in late adolescence and young adults with autism. When separating executive function into behavioral and cognitive aspects, we found that oppositional behaviors and peer problems were specific predictors for behavioral regulation and cognitive function, respectively. Our findings suggested that treating common predictors in childhood, such as inattention, may potentially improve real-world executive function in autism during the transition into adulthood.
      Citation: Autism
      PubDate: 2023-07-31T10:48:20Z
      DOI: 10.1177/13623613231184733
       
  • The emotional support plan: Feasibility trials of a brief,
           telehealth-based mobile intervention to support coping for autistic adults
           

    • Free pre-print version: Loading...

      Authors: Vanessa H Bal, Annabelle M Mournet, Tori Glascock, Jacqueline Shinall, Gabrielle Gunin, Nikita Jadav, Henry Zhang, Emily Brennan, Emily Istvan, Evan M Kleiman
      Abstract: Autism, Ahead of Print.
      Difficulties regulating emotions during periods of distress may contribute to the high rates of co-occurring depression and anxiety in autistic adults. The emotional support plan (ESP) is a brief intervention designed to support autistic adults to use positive coping skills during periods of distress. Thirty-six autistic adults participated in studies to assess the acceptability of the ESP intervention to cope with stressors during the COVID-19 pandemic and postsecondary education and feasibility of the study design elements to inform future trials. Most participants reported using strategies from their ESP; 86%–89% reported the intervention had a positive impact on them and 67%–71% would recommend it to another person. Completion of weekly monitoring and outcome assessments were high; ecological momentary assessment was more variable. The current results provide preliminary support for the acceptability of the ESP intervention. Important insights were also gained to inform feasibility of the design to assess its potential efficacy in future studies. While further research is clearly needed, the brief nature of the ESP may provide benefit as a starting point for those who may be proactively seeking support to cope with anticipated stressors or those who would benefit from guidance to promote emotion regulation during stressful life events.Lay abstractAutistic adults may have difficulty coping during stressful periods, which could make them more vulnerable to depression and anxiety. We designed the emotional support plan (ESP) to help autistic people find ways to cope in stressful situations. Thirty-six autistic adults created an ESP and answered questions about their opinions of the ESP. Most autistic adults found the ESP to have a positive impact on them and many would recommend the ESP to another person. Feedback from autistic adults suggested ways that we might test the ESP in future studies. Overall, autistic adults in this study found the ESP to be useful and a worthwhile intervention to study more in the future. While more research is clearly needed, we hope that the brief nature of the ESP will make it helpful for autistic people who are trying to handle negative feelings during stressful life events.
      Citation: Autism
      PubDate: 2023-07-27T11:54:09Z
      DOI: 10.1177/13623613231186035
       
  • The relationship between camouflaging and mental health: Are there
           differences among subgroups in autistic adults'

    • Free pre-print version: Loading...

      Authors: Wikke J van der Putten, Audrey JJ Mol, Tulsi A Radhoe, Carolien Torenvliet, Joost A Agelink van Rentergem, Annabeth P Groenman, Hilde M Geurts
      Abstract: Autism, Ahead of Print.
      Camouflaging is hypothesized to play an important role in developing mental health difficulties. But this might not be true for everyone. It remains unclear for whom camouflaging is associated with mental health. In this preregistered study (AsPredicted #45095), we investigated whether (1) camouflaging and mental health were associated and (2) we could detect subgroups with a different association between camouflaging and mental health. For this study, 352 autistic adults aged 30–84 years filled in, among others, the Dutch Camouflaging Autistic Traits Questionnaire to measure camouflaging and the Symptom Checklist-90 Revised to measure mental health difficulties. We found a moderate correlation between camouflaging and mental health difficulties (r = 0.45). However, there was only a strong association between camouflaging and mental health in a small subgroup, while the association was small in most autistic adults. For varying levels of negative affect and (to a lesser extent) autism traits, the association between camouflaging and mental health differed, but not for biological sex, age, or educational level. Thus, while one should be careful with group-based conclusions regarding the (negative) impact of camouflaging, camouflaging can be important to consider in clinical practice, especially for people with a substantial level of negative affect.Lay abstractWhen autistic people use strategies to hide their autistic characteristics, we call this camouflaging. Autistic adults suggested that camouflaging can result in mental health difficulties. That is, people who report to camouflage also report mental health difficulties. However, since there are many differences between autistic people, this relationship may also differ between subgroups. Therefore, in this study we investigated whether camouflaging and mental health difficulties are related and whether this relationship is equal for all autistic adults. For this study, 352 autistic adults aged 30–84 years filled in the Dutch Camouflaging Autistic Traits Questionnaire to measure camouflaging and the Symptom Checklist-90 Revised to measure mental health difficulties. We found that camouflaging was moderately related to mental health difficulties. This means that people who report more camouflaging also report more mental health difficulties. When we looked closer, we found that this relationship was strong for only a small subgroup of autistic adults. In most other autistic adults, there was a small or no relationship between camouflaging and mental health difficulties. Therefore, it is important that clinicians are aware of camouflaging and its possible relationship with mental health difficulties, but that they do not generalize the negative consequences to everyone.
      Citation: Autism
      PubDate: 2023-07-27T11:50:30Z
      DOI: 10.1177/13623613231185402
       
  • Explaining differences in autism detection timing: Age of diagnosis and
           associated individual and socio-familial factors in Chinese children

    • Free pre-print version: Loading...

      Authors: Ling Li Leng, Yue Wen Zhu, Lin Gang Zhou
      Abstract: Autism, Ahead of Print.
      The timing of autism spectrum disorder detection in research and clinical practice is characterised by substantial heterogeneity ranging from infancy to school age. In this study, we examined the age of diagnosis and its associated individual and socio-familial factors in Chinese children diagnosed with autism spectrum disorder. A sample of 1235 autism spectrum disorder children from 132 rehabilitation organisations in Shenzhen was investigated in 2021. We found a mean age of diagnosis of 31.4 ± 12.7 months and a median of 30.0 months. Although 71.7% of the children received their diagnosis between 25 and 36 months of age, and 13.3% were diagnosed early (⩽24 months), 15.1% did not have their symptoms detected until preschool or later years (>36 months). The diagnosis was likely delayed (>36 months) if the children were older, were less severe and presented with no intellectual impairment. The odds of delayed autism spectrum disorder diagnosis were more than 9 times higher among migrant autism spectrum disorder children than those with local household registrations. The study underscores the importance of identifying culturally sensitive socio-economic determinants in autism spectrum disorder detection in addition to clinical factors, as the former are likely to affect the quality of life of many autism spectrum disorder children and their families.Lay AbstractTimely detection is an issue of paramount importance in the care of children with autism spectrum disorder. Whether the delayed autism spectrum disorder diagnosis can be explained by children’s clinical presentations and socio-familial status in China is a question to be addressed. We investigated 1235 autism spectrum disorder children from 132 rehabilitation organisations in Shenzhen, China. These children were found to have a mean age of diagnosis of 31.4 ± 12.7 months and a median age of diagnosis of 30.0 months. The majority of these children were able to receive their diagnosis during toddlerhood. However, about one in six were not diagnosed until they entered preschool or later, thus missing the golden window of opportunity for early intervention. The age of diagnosis was likely to be late if the children were older, were less severe and presented with no intellectual impairment. The odds of having a delayed autism spectrum disorder diagnosis were more than 9 times higher among migrant autism spectrum disorder children than among those with local household registrations, thus underscoring the importance of identifying culturally sensitive socio-economic determinants in autism spectrum disorder detection, as these factors are likely to affect the quality of life of many autism spectrum disorder children and their families.
      Citation: Autism
      PubDate: 2023-07-26T07:04:08Z
      DOI: 10.1177/13623613231187184
       
  • “It just depends”: Parent, teacher, and expert conceptualization of
           social communication in young autistic children

    • Free pre-print version: Loading...

      Authors: Katherine M Walton, Alayna R Borowy, Christopher A Taylor
      Abstract: Autism, Ahead of Print.
      Improving social communication is a frequent goal of early autism services. However, it is unclear whether existing models of social communication align with the perspectives and priorities of key stakeholders, including parents, teachers, and expert clinicians. Stakeholder perspectives on social communication characteristics and priorities for young autistic children were gathered during seven focus groups. Participants included parents (three groups; n = 21), teachers (two groups; n = 8), and experts in early social communication and autism (two groups; n = 14). Content analysis procedures were used to develop and refine a codebook for themes and sub-themes that emerged from the focus group data and to code this data. Qualitative data analysis revealed several themes consistent with existing models of social communication in autism (expressive and receptive communication; social interaction), as well as novel themes related to unconventional communication, the impact of context on social communication, and the role of emotion regulation in social communication. Overall, participants expressed that adequately capturing autistic children’s social communication skills was challenging because autistic social communication is influenced greatly by a number of contextual, relational, motivational, and regulatory factors. These findings provide valuable insight for aligning social communication measurement and support with stakeholder priorities.Lay abstractImproving social communication is often one goal during early autism services. However, researchers do not yet know whether their ideas about which social communication skills should be targeted during services for young autistic children are the same as the goals of autism community members, such as parents, teachers, and expert clinicians. This study used focus groups (meetings of small groups of community members) to ask people from these groups about what aspects of social communication are most important to support in young autistic children. A total of 43 people participated in these focus groups. These groups included parents (three groups; 21 people), teachers (two groups; 8 people), and experts in early social communication and autism (two groups; 14 people). Focus group participants talked about several aspects of social communication that were already familiar to the research team, such as problems with expressive communication, language understanding, and social interaction. However, participants also talked about several parts of social communication that were less familiar to the research team and had usually not been mentioned in previous research. These included (1) considering the value of unusual forms of communication, (2) taking context and setting into account when considering social communication, and (3) how communication and emotion regulation impact one another. The information from these focus groups will be helpful to making sure that researchers and clinicians focus their social communication supports on areas that are most important to parents and teachers.
      Citation: Autism
      PubDate: 2023-07-26T07:01:39Z
      DOI: 10.1177/13623613231185401
       
  • Using mobile health technology to assess childhood autism in low-resource
           community settings in India: An innovation to address the detection gap

    • Free pre-print version: Loading...

      Authors: Indu Dubey, Rahul Bishain, Jayashree Dasgupta, Supriya Bhavnani, Matthew K Belmonte, Teodora Gliga, Debarati Mukherjee, Georgia Lockwood Estrin, Mark H Johnson, Sharat Chandran, Vikram Patel, Sheffali Gulati, Gauri Divan, Bhismadev Chakrabarti
      Abstract: Autism, Ahead of Print.
      A diagnosis of autism typically depends on clinical assessments by highly trained professionals. This high resource demand poses a challenge in low-resource settings. Digital assessment of neurodevelopmental symptoms by non-specialists provides a potential avenue to address this challenge. This cross-sectional case-control field study establishes proof of principle for such a digital assessment. We developed and tested an app, START, that can be administered by non-specialists to assess autism phenotypic domains (social, sensory, motor) through child performance and parent reports. N = 131 children (2–7 years old; 48 autistic, 43 intellectually disabled and 40 non-autistic typically developing) from low-resource settings in Delhi-NCR, India were assessed using START in home settings by non-specialist health workers. The two groups of children with neurodevelopmental disorders manifested lower social preference, greater sensory interest and lower fine-motor accuracy compared to their typically developing counterparts. Parent report further distinguished autistic from non-autistic children. Machine-learning analysis combining all START-derived measures demonstrated 78% classification accuracy for the three groups. Qualitative analysis of the interviews with health workers and families of the participants demonstrated high acceptability and feasibility of the app. These results provide feasibility, acceptability and proof of principle for START, and demonstrate the potential of a scalable, mobile tool for assessing neurodevelopmental conditions in low-resource settings.Lay abstractAutism is diagnosed by highly trained professionals– but most autistic people live in parts of the world that harbour few or no such autism specialists and little autism awareness. So many autistic people go undiagnosed, misdiagnosed, and misunderstood. We designed an app (START) to identify autism and related conditions in such places, in an attempt to address this global gap in access to specialists. START uses computerised games and activities for children and a questionnaire for parents to measure social, sensory, and motor skills. To check whether START can flag undiagnosed children likely to have neurodevelopmental conditions, we tested START with children whose diagnoses already were known: Non-specialist health workers with just a high-school education took START to family homes in poor neighbourhoods of Delhi, India to work with 131 two-to-seven-year-olds. Differences between typically and atypically developing children were highlighted in all three types of skills that START assesses: children with neurodevelopmental conditions preferred looking at geometric patterns rather than social scenes, were fascinated by predictable, repetitive sensory stimuli, and had more trouble with precise hand movements. Parents’ responses to surveys further distinguished autistic from non-autistic children. An artificial-intelligence technique combining all these measures demonstrated that START can fairly accurately flag atypically developing children. Health workers and families endorsed START as attractive to most children, understandable to health workers, and adaptable within sometimes chaotic home and family environments. This study provides a proof of principle for START in digital screening of autism and related conditions in community settings.
      Citation: Autism
      PubDate: 2023-07-17T10:56:31Z
      DOI: 10.1177/13623613231182801
       
  • Positive and challenging themes in parents’ perceptions of their
           relationships with their child with autism: Comparison between mothers and
           fathers

    • Free pre-print version: Loading...

      Authors: Shir Moshe, David Oppenheim, Michal Slonim, Lior Hamburger, Yael Maccabi, Nurit Yirmiya
      Abstract: Autism, Ahead of Print.
      Most studies of how parents of children with autism view the parent–child relationship used self-report questionnaires and focused on challenges. This study broadened the lens by interviewing parents using open-ended questions that provide an opportunity to raise challenging but also positive experiences. Seventy-five mother–father dyads were interviewed individually about their own and their spouses’ relationships with their preschooler, and content analyses of their responses revealed nine relationship themes. In descending order, the themes mentioned most frequently by mothers were “Security and Closeness,” “Love,” and “Tenderness and Sensitivity,” and by fathers were “Pleasure in Joint Activities,” “Security and Closeness,” and “Guidance.” Positive themes were more common than challenging themes. Finally, more mothers mentioned the themes “Love,” “Tenderness and Sensitivity,” “High Involvement and Care,” and “Difficulties” than did fathers, whereas more fathers mentioned the themes “Guidance,” “Pleasure in Joint Activities,” and “Limited Time with Child” than did mothers. The findings portray a nuanced view of the parenting experience of mothers and fathers of preschoolers with autism.Lay AbstractMost studies of how parents of children with autism see the parent–child relationship used questionnaires completed by the parents and focused on challenges. This study broadened the lens by interviewing parents using open-ended questions that provide an opportunity to raise challenging but also positive experiences. Seventy-five mother-father dyads were interviewed individually about their own and their spouses’ relationships with their preschooler, and we found nine relationship themes. In descending order, the themes mentioned most frequently by mothers were “Security and Closeness,” “Love,” and “Tenderness and Sensitivity,” and by fathers were “Pleasure in Joint Activities,” “Security and Closeness,” and “Guidance.” Positive themes were more common than challenging themes. Finally, more mothers mentioned the themes “Love,” “Tenderness and Sensitivity,” “High Involvement and Care,” and “Difficulties” than did fathers, whereas more fathers mentioned the themes “Guidance” and “Pleasure in Joint Activities” than did mothers. The findings portray a nuanced view of the parenting experience of mothers and fathers of preschoolers with autism.
      Citation: Autism
      PubDate: 2023-07-14T05:19:28Z
      DOI: 10.1177/13623613231182513
       
  • ‘It seems like a luxury to be able to offer that’: Factors influencing
           

    • Free pre-print version: Loading...

      Authors: Jade Davies, Anna Remington, Carole Buckley, Laura Crane, Katelyn Smalley
      Abstract: Autism, Ahead of Print.
      Autistic people in England face worse health outcomes than non-autistic people. Autism-specific annual health checks have been proposed as one solution to this issue. This study identified strategies to incentivise primary care providers to offer autism-specific annual health checks, using a behavioural science approach. In phase 1, we conducted interviews and focus groups with autistic people (n = 10) and primary care providers (n = 11). In phase 2, we conducted a national survey of primary care providers (n = 196). Qualitative data were analysed using a framework method and the Theoretical Domains Framework. Quantitative data were analysed descriptively, and comparisons between sub-groups of survey respondents were made using Mann–Whitney U and Kruskal–Wallis tests. The most salient theoretical domain was environmental context and resources. Participants identified lack of time and staff as key barriers to implementation. Delegating tasks to non-physician practitioners and automating processes were seen as key facilitators. Autism-specific knowledge was another relevant domain; education produced and delivered by autistic people was posited to increase health check uptake and quality. Overall, participants were enthusiastic about autism-specific annual health checks but were concerned about the practical aspects of implementation. We identified specific barriers and facilitators that can be addressed prior to policy adoption to maximise chances of success.Lay abstractAutistic people are more likely to have mental and physical health problems than non-autistic people. Annual health checks could reduce these problems by finding and treating them early. Annual health checks are yearly medical appointments where a primary healthcare provider (such as a doctor or nurse) can check things like a patient’s weight and heart rate and ask if they have any worries about their health. In this study, we wanted to understand what might encourage primary healthcare providers to use annual health checks with their autistic patients. First, we spoke to 10 autistic people and 11 primary healthcare providers. Using the findings from these conversations, we created an online survey for primary healthcare providers in England. We used the findings from the interviews and survey to help us understand what would encourage primary healthcare providers to offer annual health checks for autistic people. Our participants said that a lack of time and staff would make it hard to provide health checks. To help, they said other members of staff (such as nurses and healthcare assistants) could do the health checks, rather than doctors. They also said parts of the process could be made automatic to save time (e.g. sending automatic reminders). Knowledge about autism was important too (e.g. knowing about the common conditions autistic people have, and how to best support autistic patients). Participants said training on these topics, produced and delivered with autistic people, could encourage them to use annual health checks with their autistic patients.
      Citation: Autism
      PubDate: 2023-07-11T10:43:56Z
      DOI: 10.1177/13623613231182011
       
  • Exploring camouflaging by the Chinese version Camouflaging Autistic Traits
           Questionnaire in Taiwanese autistic and non-autistic adolescents: An
           initial development

    • Free pre-print version: Loading...

      Authors: Chun-Hao Liu, Yi-Lung Chen, Pei-Jung Chen, Hsing-Chang Ni, Meng-Chuan Lai
      Abstract: Autism, Ahead of Print.
      Camouflaging is a strategy adopted by neurodivergent individuals to cope in neurotypical social contexts, likely related to perceived stress. Despite increasing research in autistic adults, studies of camouflaging in adolescents remain sparse. The self-reported Camouflaging Autistic Traits Questionnaire has been validated in adults in some Western societies, but not in non-Western populations. We examined the psychometric properties of the self-reported and caregiver-reported Chinese version Camouflaging Autistic Traits Questionnaire in Taiwanese adolescents. We enrolled 100 autistic and 105 non-autistic adolescents (aged 12–18 years) and their caregivers. As an initial development, we found a two-factor structure (“compensation-masking” and “assimilation”) via exploratory factor analysis, alongside good internal consistency and test–retest reliability, for both the self-reported and caregiver-reported Chinese version Camouflaging Autistic Traits Questionnaire. Self-reported and caregiver-reported Chinese version Camouflaging Autistic Traits Questionnaire scores were moderately to highly correlated. Autistic adolescents showed higher total Chinese version Camouflaging Autistic Traits Questionnaire and assimilation scores than non-autistic adolescents in both males and females. Female autistic adolescents showed higher assimilation than male autistic adolescents, but there was no significant difference between sex assigned at birth on compensation-masking in either autistic or non-autistic adolescents. Assimilation correlated with higher self-perceived stress for both autistic and non-autistic adolescents. Both self-reported and caregiver-reported Chinese version Camouflaging Autistic Traits Questionnaire were reliable and offered meaningful information to understand social coping of Taiwanese autistic and non-autistic adolescents.Lay abstractCamouflaging is a coping strategy used by some autistic and other neurodivergent people to fit in neurotypical social contexts. The self-reported Camouflaging Autistic Traits Questionnaire has been validated for use in research with adults in some Western societies, but not in non-Western cultural-ethnic groups. We translated Camouflaging Autistic Traits Questionnaire into traditional Chinese and examined the use of this measure in Taiwanese adolescents via both self-report and caregiver-report in 100 autistic and 105 non-autistic adolescents. Both self-reported and caregiver-reported Chinese version Camouflaging Autistic Traits Questionnaire were composed of two factors (i.e. a “compensation-masking” subscale and an “assimilation” subscale). Both adolescent self-reported and caregiver-reported Chinese version Camouflaging Autistic Traits Questionnaire total score and subscales were reliable in measurement, and they highly correlated with each other. Taiwanese autistic adolescents were more likely to camouflage than non-autistic adolescents, especially on assimilation. Female autistic adolescents showed higher assimilation than male autistic adolescents. Higher camouflaging, especially assimilation, was associated with higher stress in autistic and non-autistic adolescents alike. Both self-reported and caregiver-reported Chinese version Camouflaging Autistic Traits Questionnaire were reliable and offered meaningful information to help us understand the social coping experiences of autistic and non-autistic adolescents.
      Citation: Autism
      PubDate: 2023-07-10T08:57:35Z
      DOI: 10.1177/13623613231181732
       
  • Patterns of equipment use for autistic children in multi-sensory
           environments: Time spent with sensory equipment varies by sensory profile
           and intellectual ability

    • Free pre-print version: Loading...

      Authors: Katy L Unwin, Georgina Powell, Alice Price, Catherine RG Jones
      Abstract: Autism, Ahead of Print.
      Multi-sensory environments are widely used with autistic children. However, there are no data on how autistic children choose to spend time in the room and how this relates to their sensory, behavioural and intellectual profiles. We observed the frequency and duration of visits to multi-sensory environment equipment of 41 autistic children during 5 min of free play. At a group level, the bubble tube and touch, sound and light board were both highly popular, with the fibre optics and tactile board receiving less attention. Sensory seeking behaviours were more commonly observed in the multi-sensory environment than sensory-defensive behaviours. We found that observed sensory seeking behaviours, along with parent-reported sensory behaviours and non-verbal intelligence quotient, were associated with specific patterns of multi-sensory environment equipment use, but broader autistic behaviours were not. These data suggest that the multi-sensory environment equipment preferences of autistic children are related to individual differences in sensory behaviour and non-verbal intelligence quotient. This information has the potential to inform the development of best-practice multi-sensory environment guidelines that focus on individual needs.Lay abstractMulti-sensory environments, often called sensory rooms, are widely used with autistic children. However, we know very little about how autistic children choose to spend their time in multi-sensory environments. We also do not know how their equipment preferences relate to their individual characteristics such as their sensory differences, level of ability or general autistic behaviours. We measured the frequency and duration of visits to multi-sensory environment equipment of 41 autistic children during 5 min of free play. The bubble tube and touch, sound and light board were both highly popular, with the fibre optics and tactile board receiving less attention. The children displayed significantly more sensory seeking behaviours in the multi-sensory environment than sensory-defensive behaviours. These sensory seeking behaviours, as well as the sensory behaviours that their parents reported they showed in daily life, were associated with specific patterns of multi-sensory environment equipment use. Non-verbal ability was also associated with multi-sensory environment equipment use, but broader autistic behaviours were not. Our findings show that the multi-sensory environment equipment preferences of autistic children are related to individual differences in sensory behaviours and non-verbal ability. This information could be useful for teachers and other practitioners who want to know how best to use multi-sensory environments with autistic children.
      Citation: Autism
      PubDate: 2023-07-08T05:10:24Z
      DOI: 10.1177/13623613231180266
       
  • Dropping the mask: It takes two

    • Free pre-print version: Loading...

      Authors: Julia M Cook, Laura Crane, William Mandy
      Abstract: Autism, Ahead of Print.
      In some social situations, autistic people feel pressure to modify their innate social behaviour (i.e. camouflage), while in other social situations they feel free to engage in ways that feel authentic or true to themselves. To date, the latter aspect of autistic people’s experience has rarely been explored. Using an online qualitative survey, this study examined 133 autistic people’s experiences and perspectives of socialising in ways that felt authentic to them, with a particular focus on mixed-neurotype interactions and the role of nonautistic people. Using reflexive thematic analysis, four themes were generated: (1) embracing diverse communication styles, interests and perspectives; (2) creating a more inclusive mixed-neurotype social environment together; (3) minimising and managing mixed-neurotype miscommunication in mutually beneficial ways; and (4) enjoyable interactions involving reduced anxiety and exhaustion as well as genuine connection and rapport. These findings are discussed with reference to theory and research involving the construct of authenticity both inside and outside the field of autism research. The knowledge generated in this study illuminates a previously underexplored aspect of autistic people’s experience and elucidates potential avenues through which to enhance the social experiences and well-being of this group.Lay abstractIn some situations, autistic people feel pressure to change their social behaviour by camouflaging. In other situations, autistic people feel they don’t need to change their social behaviour. Instead, they feel they can socialise in ways that feel authentic or true to themselves. Past research has tended to focus on autistic people’s experiences of camouflaging rather than their experiences of authenticity. In this study, we asked autistic people what it is like for them when they can socialise in ways that feel authentic or true to themselves. Autistic people described authentic-feeling socialising as more free, spontaneous and open than camouflaging. In supportive environments, this kind of socialising had more positive and less negative consequences than camouflaging. Autistic people felt that having self-awareness and acceptance of their own social needs and being around autistic and nonautistic people who were accepting and understanding helped them to socialise in authentic-feeling ways. Autistic people also spoke about communication behaviours they felt nonautistic people should use to help overcome misunderstandings and create autism-friendly social environments. These findings suggest it is helpful for autistic people to have access to supportive and accepting social environments in which they feel able to socialise in ways that feel authentic to them. In creating such social environments, it is important to focus on nonautistic people’s knowledge and attitude towards autistic people and also their ability to use helpful communication behaviours.
      Citation: Autism
      PubDate: 2023-07-05T11:42:51Z
      DOI: 10.1177/13623613231183059
       
  • Supporting tamariki takiwātanga Māori (autistic Māori children):
           Exploring the experience of early childhood educators

    • Free pre-print version: Loading...

      Authors: Jessica Tupou, Chevelle Ataera, Carla Wallace-Watkin, Hannah Waddington
      Abstract: Autism, Ahead of Print.
      The experience of the many autistic children who attend inclusive early childhood education settings is largely shaped by the knowledge and attitudes of the educators who support them. Autistic children from under-represented ethnic groups, such as autistic Māori, are likely to face additional challenges and educators need to consider strategies to support their cultural development. We conducted in-depth, semi-structured interviews with 12 educators with recent experience supporting tamariki takiwātanga Māori (autistic Māori children) in inclusive early childhood settings. Data were analysed using reflexive thematic analysis resulting in three themes and seven subthemes. Overall, participants’ understandings of autism aligned with the neurodiversity perspective, and there were similarities between neurodiversity and Māori perspectives. Participants wanted more training and resources drawn from a Māori worldview and available in te reo Māori (the Māori language). These findings have important implications for practice and future research.Lay AbstractThe knowledge and attitudes of educators can have a strong influence on the experiences of autistic children who attend inclusive early childhood settings. Autistic children from under-represented ethnic groups, for example, tamariki takiwātanga Māori (autistic Māori children), are likely to face extra challenges and educators need to consider ways to support their cultural development. For this study, we interviewed 12 educators with recent experience supporting tamariki takiwātanga Māori in inclusive early childhood settings. We constructed three themes and seven subthemes from the interview data. We found that educators’ understandings of autism were mostly in line with the neurodiversity perspective, which views autism as a difference, not a disorder. We also found similarities between the neurodiversity perspective and Māori perspectives of autism and a need for more training and resources based upon a Māori world view and available in te reo Māori (the Māori language).
      Citation: Autism
      PubDate: 2023-07-04T04:45:43Z
      DOI: 10.1177/13623613231181622
       
  • Uncovering employment outcomes for autistic university graduates in the
           United Kingdom: An analysis of population data

    • Free pre-print version: Loading...

      Authors: Jonathan Vincent, Kevin Ralston
      Abstract: Autism, Ahead of Print.
      International research suggests that increasing numbers of autistic people are entering higher education. Currently, very little is known about this population. For example, the rates of autistic people enrolling at UK-based higher education institutions, the demographics of this population, the subjects they study and particularly their graduate outcomes are unknown. This study is an exploratory analysis of autistic graduate outcomes. We compare outcomes between autistic students, other disabled students and non-disabled students, by sex. The article draws upon population data collected by the Higher Education Statistical Agency in the United Kingdom (N = 1,326,416) across the years 2012–2018. Our findings indicate that the academic programmes studied at university by autistic students are more diverse than typically assumed. We also found that graduates make the transition into a range of employment sectors following graduation, but experience persistent and disparities in economic activity and income. We argue that higher education institutions must focus greater attention on developing more robust and effective employment transition support for autistic students and graduates.Lay abstractInternational research suggests that more autistic people are entering higher education. Currently, very little is known about this group in the United Kingdom, for example, we have little information about how many autistic people enrol at UK-based higher education institutions, their backgrounds, the academic programmes they study and what they do once they have graduated. Our study tries to explore these issues by comparing outcomes between autistic students, other disabled students and non-disabled students. We use population data collected by the Higher Education Statistical Agency in the United Kingdom, which included 1,326,416 graduates across the years 2012–2018. Our findings indicate that the degree subjects studied at university by autistic students are more diverse than often people think. We also found that graduates go on to work in a range of employment sectors following graduation but often experience worse outcomes in terms of access to full-time work and worse pay. We argue that universities and colleges must focus greater attention on developing better employment transition support for autistic students and graduates.
      Citation: Autism
      PubDate: 2023-06-24T05:20:58Z
      DOI: 10.1177/13623613231182756
       
  • “Survival classes for a neurotypical world”: What French autistic
           adults want and need after receiving an autism diagnosis

    • Free pre-print version: Loading...

      Authors: Raven Bureau, Céline Clément
      Abstract: Autism, Ahead of Print.
      Research on how adults react to receiving an autism diagnosis is focused on the United States or the United Kingdom context even though cultural differences might have an impact on these experiences. Few interventions for autistic adults exist, and when they do, they are often described as inappropriate. Our study aimed to explore the experiences of French adults diagnosed with autism and the needs they identified following this diagnosis as well as to ask them directly what type of interventions they would have wanted. We conducted semi-structured interviews with 12 adults and identified three recurring themes: (1) reactions to the diagnosis, (2) relations with others and society, and (3) wants and needs. Results indicated that some experiences were congruent with existing Anglophone literature, while others were heavily influenced by the specific cultural context. Our participants also highlighted a number of unmet needs and offered suggestions for adequate interventions.Lay abstractAdults receiving an autism diagnosis might not react the same depending on their countries or cultures. We also know that autistic people are rarely asked what they think would be best for them following this diagnosis. In this study, we asked 12 French autistic adults about their experiences of receiving an autism diagnosis as well as what they thought might be useful afterwards. Overall, we found that some experiences were similar to experiences related by English or American participants, but some were specific to the French culture, suggesting that such research should expand into new territories and cultures, especially non-European ones. Our participants also had quite a few ideas as to what would be useful for people in the same situation. Some of the suggestions can be put into action by peers and professionals alike, while others are wishes relating to how our participants would like society to behave toward them and people like them, for example. This article allows for a better comprehension of how cultural differences can impact the experience of receiving an autism diagnosis as an adult and provides some insight into what these adults want and desire following such a diagnosis.
      Citation: Autism
      PubDate: 2023-06-22T08:58:34Z
      DOI: 10.1177/13623613231183071
       
  • A longitudinal examination of mental health and marital functioning of
           mothers and fathers of autistic adolescents during COVID-19

    • Free pre-print version: Loading...

      Authors: Naomi V Ekas, Chrystyna D Kouros, Brock A Rigsby, Sarah Madison, Julianne Hymel, Maddy Filippi
      Abstract: Autism, Ahead of Print.
      Parents, particularly mothers, of autistic children may be especially vulnerable to the negative effects of COVID-19. The current longitudinal study examined changes in psychological distress (anxiety, depression, stress) and marital functioning of mothers and fathers of autistic children across three time points between April and October 2020, and the extent to which pre-COVID factors predicted changes in these outcomes. Participants were 94 mothers and 58 fathers of autistic children drawn from a larger longitudinal study about family relationships and autistic children’s mental health that began prior to the pandemic. Results indicated that mothers reported higher levels of psychological distress compared to fathers in July and October 2020. Although, on average, levels of psychological distress and marital functioning did not significantly change for mothers and fathers, pre-pandemic child functioning and marital satisfaction predicted individual differences in change in marital satisfaction during the pandemic for mothers. Implications of the findings are discussed.Lay abstractParents of autistic children may be especially vulnerable to the negative effects of COVID-19. The current study examined changes in mental health and marital functioning of mothers and fathers of autistic children across three time points between April and October 2020. The study also explored whether pre-COVID factors could predict outcomes during the pandemic. Participants were 94 mothers and 58 fathers of autistic children drawn from a larger study about family relationships and autistic children’s mental health that began prior to the pandemic. Results indicated that mothers reported higher levels of mental health problems compared to fathers in July and October 2020. Levels of mental health and marital functioning did not change between April and October 2020. Pre-pandemic child functioning and marital satisfaction predicted changes in mother’s ratings of marital satisfaction. The findings have implications for ways to best support families during challenging periods.
      Citation: Autism
      PubDate: 2023-06-22T08:53:34Z
      DOI: 10.1177/13623613231182180
       
  • Examining a model of anxiety in autistic adults

    • Free pre-print version: Loading...

      Authors: Saskia Riedelbauch, Sebastian B Gaigg, Tobias Thiel, Veit Roessner, Melanie Ring
      Abstract: Autism, Ahead of Print.
      Anxiety disorders commonly occur in autism. Existing studies implicate intolerance of uncertainty, alexithymia, sensory processing differences and emotion regulation difficulties as influencing factors of anxiety in autism. To date, a few studies have considered the combination of these factors within the same sample. This study used structural equation modelling to test the prediction that intolerance of uncertainty and emotion regulation constitute more direct causes of anxiety in autism that mediate the influences of sensory processing difference and alexithymia as more sequential contributing factors. Autistic (n = 86) and non-autistic adults (n = 100) completed a battery of self-report questionnaires. Only when applied to each group separately, the broad predictions of the model were confirmed for the autistic group following data-driven additions of paths between sensory processing difference and anxiety and alexithymia implying that sensory processing difference contribute indirectly as well as directly to individual differences in anxiety. For the non-autistic group, model fit could only be achieved after removing autism-related traits and sensory processing differences as predictors of anxiety. These results suggest that aetiology and expression of anxiety in autism partially overlap with what is observed in the general population except that sensory processing differences appear to play a relatively unique role in the context of autism.Lay abstractAnxiety disorders are common in autism. Research studies have identified factors that influence anxiety in autism, such as difficulties with uncertain situations, difficulties understanding own emotions, differences in processing sensory input (related to our senses) and difficulties regulating emotions. To date, a few studies have considered the combination of these factors within the same sample. This study used structural equation modelling to test the contribution of these factors in autism. Autistic (n = 86) and non-autistic adults (n = 100) completed a battery of self-report questionnaires. Only when applied to each group separately, the broad predictions of the model were confirmed for the autistic group. The model confirmed that difficulties with uncertain situations and in regulating emotions play a central role in anxiety in autism. Difficulties understanding own emotions and differences in processing sensory input both contribute to anxiety indirectly through their respective interrelation with the other two factors (difficulties with uncertain situations and in regulating emotions). Importantly, the results imply that sensory processing differences contribute not only indirectly but also directly to individual differences in anxiety. For the non-autistic group, model fit could only be achieved after removing autism-related traits and sensory processing differences as predictors of anxiety. These results suggest that cause/development and expression of anxiety in autism partially overlap with what is observed in the general population except that sensory processing differences appear to play a relatively unique role in the context of autism.
      Citation: Autism
      PubDate: 2023-06-17T05:44:00Z
      DOI: 10.1177/13623613231177777
       
  • Re-examining the association between the age of learning one is autistic
           and adult outcomes

    • Free pre-print version: Loading...

      Authors: Florence YN Leung, Punit Shah, David Mason, Lucy A Livingston
      Abstract: Autism, Ahead of Print.
      It was recently reported that learning one is autistic earlier in life is associated with greater quality of life and well-being in university students. In a pre-registered extension of this work, we addressed several limitations of this study by (a) recruiting a larger sample of more diverse ages and education levels, (b) distinguishing between learning about and receiving an autism diagnosis, (c) accounting for additional confounding variables, and (d) studying different quality of life dimensions. Autistic adults (N = 300) reported when they first learned they were autistic, as well as when they actually received an autism diagnosis, and provided detailed socio-demographic information. Participants also completed measures of their autistic traits, as well as well-being and quality of life across multiple domains. In contrast to recent research, we found the age participants first learned they were autistic did not significantly and uniquely predict their quality of life and well-being. Rather, having more autistic traits was the strongest predictor of poorer quality of life and well-being, while other socio-demographic factors were also relevant. We discuss the implications of these findings for understanding and improving outcomes in autistic adults and call for higher quality open science on this important topic.Lay abstractAn interesting recent study found that people who learned they were autistic at a younger age felt more positive about their lives (i.e., had better quality of life) than those who learned at an older age. However, this study has some limitations: (a) the study only involved a fairly small group of university students, (b) whether ‘learning one is autistic’ referred to learning about one’s diagnosis or receiving one’s diagnosis was unclear, (c) the influence of other factors on the link between age of learning one is autistic and quality of life was not considered, and (d) the assessment of different areas of quality of life was limited. Addressing these limitations, we re-examined whether the age at which one learns they are autistic relates to quality of life in adulthood. Contrary to the previous study, we found the age at which one learns about their autism does not have a significantly independent impact on their quality of life as an adult. Rather, other factors (e.g., autistic traits, sex, and additional mental health conditions) may have a greater impact. Given our participant sample was larger and more diverse in age and education level compared to previous research, this finding is likely to be more applicable to autistic adults from different backgrounds. Importantly, however, we are not suggesting that individuals should be made aware of their diagnosis later than sooner. Getting a timely diagnosis remains crucial for autistic people and their families to access appropriate support.
      Citation: Autism
      PubDate: 2023-06-15T05:44:26Z
      DOI: 10.1177/13623613231173056
       
  • Feasibility of an observational procedure to enhance early identification
           of autism spectrum disorder in paediatric settings: A mixed-methods study
           on an Ecuadorian sample

    • Free pre-print version: Loading...

      Authors: Paulina Buffle, Cristina Armijos, Alfredo Naranjo, Edouard Gentaz
      Abstract: Autism, Ahead of Print.
      Identification procedures for autism spectrum disorders in paediatric settings include screening and routine clinical surveillance. Screening tools are perceived as challenging, and a preference for direct observation has been reported in Ecuadorian paediatric settings. Augmentative observational procedures could prompt the application of screening tools, increase professionals’ sense of self-efficacy and support referral decision-making. Following the recommendations that identification procedures should be tested in a group of children without autism from local populations, we tested a set of observational tasks on 125 children from 12 to 59 months of age in various socio-economic settings, in semi-experimental conditions and on a group of 33 non-autistic children in a paediatric-setting condition. Results indicated that the social referencing task did not produce the expected response in most children in semi-experimental conditions. Responses to the elicitation of a gesture were significantly influenced by socio-economic status and geographic area. Three other tested tasks (response to name, eye contact, response to joint attention) produced the expected responses in semi-experimental and clinical conditions, suggesting that they could be used in daily routines if fidelity to training is ensured. We discuss the implication of those findings in clinical practice and professional education in an Ecuadorian context.Lay abstractIn Ecuador, the low official estimate of the number of persons with autism spectrum disorder suggest that many children are not identified and are not receiving support. Screening tools are short parent-addressed questionnaires used to identify children that may be developing with autism. Their use is recommended, but their application can be perceived as challenging in paediatric routines. Some professionals prefer looking for autism-related behaviours in a child rather than using screening questionnaires. Although a short observation does not replace the use of validated screening questionnaires, tasks to guide the observation of autistic early signs can help professionals decide to screen or refer the family for assessment and early intervention. In this study, we tested observational tasks that could be adapted to the Ecuadorian paediatric contexts.
      Citation: Autism
      PubDate: 2023-06-14T08:16:43Z
      DOI: 10.1177/13623613231175587
       
  • Voices from a pandemic: Understanding how young adults on the autism
           spectrum use computer-mediated communication

    • Free pre-print version: Loading...

      Authors: Mitzi J Ritzman, Roma Subramanian
      Abstract: Autism, Ahead of Print.
      This study investigated the benefits and challenges of computer-mediated communication use among a sample of young adults who identify with the autism spectrum via semistructured interviews. The interviews revealed that participants enjoyed using computer-mediated communication technologies (e.g. Discord, Facebook, Steam, and Zoom) to fulfill various social gratifications, as found in previous research. They appreciated that computer-mediated communication supports neurodiversity in social communication by altering the communication environment in various ways, such as the inclusion of asynchronous options and decreased sensory input. However, it is noteworthy that several mentioned that computer-mediated communication could not replace in-person interaction because it makes deep social connection difficult. Participants also discussed negative attributes of computer-mediated communication such as promoting social comparison and instant gratification. The findings are inherently valuable to learning more about young adults’ use of technology for social communication. In addition, they provide insight into how to integrate technology into the design of interventions to support the development of social connections among individuals who identify with autism.Lay abstractThis study investigated the benefits and challenges of online communication use among a sample of young adults who identify on the autism spectrum via semi-structured interviews. The interviews revealed that participants enjoyed using online forms of communication for social purposes. Participants appreciated how this type of communication changes the social environment in ways that support neurodiversity, such as the static nature of the communication context and decreased sensory input. However, some participants noted that online communication could not replace inperson interaction because it makes deep social connection difficult. Participants also discussed negative attributes of online communication such as promoting social comparison and instant gratification. The findings are inherently valuable to learning more about young adults’ use of technology for social communication. In addition, this information may provide insight into how to integrate technology into the design of interventions to support the development of social connections among individuals who identify on the autism spectrum.
      Citation: Autism
      PubDate: 2023-06-14T08:12:59Z
      DOI: 10.1177/13623613231170963
       
  • Parent perspectives on treatment: A mixed methods analysis of PEERS®
           for Preschoolers

    • Free pre-print version: Loading...

      Authors: Isita Tripathi, Christine T Moody, Elizabeth A Laugeson
      Abstract: Autism, Ahead of Print.
      Parent involvement in social skills training programs for autistic children has been associated with improvement in child and family functioning. However, limited research has explored parents’ treatment experiences, which may elucidate key therapeutic elements mediating long-term maintenance of outcomes. This study examines parent perspectives on the University of California, Los Angeles Program for the Education and Enrichment of Relational Skills (PEERS®) for Preschoolers, a group-based social skills intervention for young autistic children with social challenges. Twenty-four parents reported on outcomes and participated in semi-structured interviews 1–5 years after program completion. Inductive thematic analysis was used to categorize parent responses across four domains: Parenting behaviors, Child Outcomes, Parent Perspectives, and Challenges within Treatment. Results demonstrated an overall positive impact of PEERS® for Preschoolers, with children displaying increased social competence in peer interactions and parents emphasizing greater positivity, new parenting strategies, increased understanding, and more robust community support. Mixed methods analyses revealed that parents who endorsed continued use of social coaching skills, in particular priming and preparing their child for social interactions, showed greater improvements in long-term child functioning and parenting stress. Findings validate the efficacy of PEERS® for Preschoolers, while emphasizing the value of providing strengths-based coaching and social supports to parents participating in social skills treatment for children on the autism spectrum.Lay abstractAutistic children have social communication differences that can contribute to difficulties making and keeping friends, as well as poor mental health (e.g. anxiety, depression). Social skills training programs for preschoolers on the spectrum have been shown to increase social functioning and improve outcomes. Parent involvement in these programs is essential, as parents are able to use the intervention strategies outside of sessions. Teaching parents skills to help their children is also thought to reduce parenting stress through empowerment, knowledge, and social support. However, we still do not know much about how parents experience social skills treatments and whether there are specific parts that are especially helpful to them. This study examined parent perspectives on the University of California, Los Angeles Program for the Education and Enrichment of Relational Skills (PEERS®) for Preschoolers, an evidence-based, group social skills intervention for autistic young children who are struggling socially. Twenty-four parents reported on their child’s progress through questionnaires and participated in semi-structured interviews that asked about their experiences and perspectives 1–5 years after completing (PEERS®) for Preschoolers. Parents reported that their children displayed increased social skills and confidence after (PEERS®) for Preschoolers, while parents described feeling more positive, supported, and having greater understanding of their child and their development. Those parents who continued to use strategies taught in (PEERS®) for Preschoolers, particularly priming and preparing their child for social activities, showed greater improvements in long-term child outcomes and parenting stress. Overall, findings show that parents had a positive experience during and after PEERS® for Preschoolers, finding the program helpful in multiple ways to both their child and to themselves as a parent.
      Citation: Autism
      PubDate: 2023-06-12T10:10:12Z
      DOI: 10.1177/13623613231172314
       
  • Factor structure of the VABS-3 Comprehensive Parent/Caregiver form in
           autistic individuals: Poor fit of three-factor and unidimensional models

    • Free pre-print version: Loading...

      Authors: Ellen Wilkinson, Cristan Farmer, Evan Kleiman, Vanessa H Bal
      Abstract: Autism, Ahead of Print.
      The commonly used Vineland Adaptive Behavior Scales (VABS-3) divides adaptive behavior into three domains comprising three subdomains. The validity of this three-factor structure has not been explored in autistic samples, which are often heterogeneous with respect to language and IQ. Furthermore, although there are two comparable forms, Comprehensive Interview Form and Comprehensive Parent/Caregiver Form (a questionnaire), the original validation was based on interview data. Considering the widespread use of the VABS-3 in autism research, and the increased feasibility of online-administered questionnaires, it is necessary to establish the validity of the Parent/Caregiver form in autistic individuals across a range of abilities. This study aimed to investigate the measurement invariance of the VABS-3 Parent/Caregiver form between a minimally verbal group and verbal group of autistic people; however, poor overall fit of the three-factor structure precluded invariance analyses. Subsequent analyses suggested poor fit in both language and age groups, as well as a unidimensional model. The results of the current study suggest that neither the three-factor or unidimensional model fit the VABS-3 Parent/Caregiver Form, thereby cautioning against interpretation of domain or overall adaptive behavior composite scores in autistic individuals and further encouraging careful consideration of administration format.Lay AbstractAdaptive behavior is a broad set of skills needed to function in everyday life. The Vineland Adaptive Behavior Scales (VABS-3) is commonly used to measure adaptive behavior. It divides adaptive behavior into three domains, Communication, Daily Living Skills, and Socialization, each of which are split into subdomains. Analyses of this three-part structure of the first version of VABS used the instrument as an interview, but now it is done as a questionnaire as well. The structure has not been well supported in samples of autistic people, who often have different strengths and challenges in adaptive behavior compared with non-autistic people. Because adaptive behavior is an important concept in autism research and online-administered questionnaires are increasingly common, it is important to ensure the structure of the VABS-3 Comprehensive Parent/Caregiver Form (VABS-3:CPCF; a questionnaire) works well for autistic individuals across a range of abilities. This study aimed to investigate whether VABS-3:CPCF measures adaptive behavior similarly in verbal and minimally verbal autistic people. However, the data didn’t fit the structure in the first step of the analysis, so this could not be investigated. The next analyses also found the three-domain structure didn’t fit in different age and language groups. In addition, the data didn’t fit a structure combining all the domains into 1 (unidimensional). These results suggest that neither the three-factor or unidimensional structure fit the VABS-3:CPCF, cautioning against interpretation of domain or overall adaptive behavior composite scores in autistic individuals and further encouraging careful consideration of administration format.
      Citation: Autism
      PubDate: 2023-06-10T09:27:41Z
      DOI: 10.1177/13623613231179288
       
  • Exploring autistic adults’ psychosocial experiences affecting
           beginnings, continuity and change in camouflaging over time: A qualitative
           study in Singapore

    • Free pre-print version: Loading...

      Authors: Beatrice Rui Yi Loo, Truman Jing Yang Teo, Melanie Jiamin Liang, Dawn-Joy Leong, Diana Weiting Tan, Sici Zhuang, Laura Hull, Lucy A Livingston, Will Mandy, Francesca Happé, Iliana Magiati
      Abstract: Autism, Ahead of Print.
      Camouflaging (or otherwise referred to as masking or passing) involves hiding one’s autistic-related characteristics and differences to get by in social situations in predominantly non-autistic societies. Very little is known to date about the course of camouflaging motivations and strategies over time or the psychosocial factors that may influence autistic people’s camouflaging choices and trajectories. In an exploratory qualitative study within an Asian sociocultural context, we interviewed 11 Singaporean autistic adults (9 males, 2 females, aged 22–45 years) about their camouflaging experiences to better understand (1) their camouflaging motivations and strategies over time, and (2) related psychosocial influences. Organised across four phases (pre-camouflaging, beginnings, continuity and change over time), 17 themes relating to camouflaging motivations and 8 themes relating to strategies were identified. The earliest camouflaging motivations were predominantly relational, linked to a negative self-identity that had been shaped by adverse social experiences. Camouflaging strategies became increasingly complex and integrated into one’s sense of self over time. Our findings highlight the role of psychosocial pressures precipitating camouflaging and emphasise the need for individual and societal changes, including moving towards enhanced acceptance and inclusion to reduce psychosocial pressures on autistic people to camouflage.Lay AbstractOver their lifetimes, many autistic people learn to camouflage (hide or mask) their autism-related differences to forge relationships, find work and live independently in largely non-autistic societies. Autistic adults have described camouflaging as a ‘lifetime of conditioning . . . to act normal’ involving ‘years of effort’, suggesting that camouflaging develops over an autistic person’s lifetime and may start early on, in childhood or adolescence. Yet, we know very little about why and how autistic people start to camouflage, or why and how their camouflaging behaviours continue or change over time. We interviewed 11 Singaporean autistic adults (9 male, 2 female, 22–45 years old) who shared their camouflaging experiences. We found that autistic adults’ earliest motivations to camouflage were largely related to the desire to fit in and connect with others. They also camouflaged to avoid difficult social experiences (such as being teased or bullied). Autistic adults shared that their camouflaging behaviours became more complex and that, for some, camouflaging became a part of their self-identity over time. Our findings suggest that society should not pathologise autistic differences, but instead accept and include autistic people, to reduce the pressure on autistic people to hide who they truly are.
      Citation: Autism
      PubDate: 2023-06-10T09:19:42Z
      DOI: 10.1177/13623613231180075
       
  • The world is nuanced but pixelated: Autistic individuals’
           perspective on HIPPEA

    • Free pre-print version: Loading...

      Authors: Greta Krasimirova Todorova, Rosalind Elizabeth Mcbean Hatton, Sarveen Sadique, Frank Earl Pollick
      Abstract: Autism, Ahead of Print.
      Little attention has been given to the voice of autistic individuals during the development of theories that are trying to explain the condition. This can often make individuals feel that they have to fit into the theory’s definition, rather than it fitting into their experience. We aimed to understand to what extent the HIPPEA (High, Inflexible Precision of Prediction Errors in Autism) theory resonates with the lived experiences of autistic individuals. We conducted 21 questionnaires and 8 follow-up interviews and used a hybrid (deductive and inductive) approach to analyse the data. Based on the participants’ views, HIPPEA provides an explanation for many of the lived experiences of autistic individuals. However, refinement is needed with respect to interpersonal interactions, emotional processing and individuals’ motivation to engage with their environment despite challenges with the way the world is organised. Furthermore, more details are needed for the theory to accurately allow us to understand autism.Lay AbstractAutism is a condition comprised of difficulties in social and communication contexts, sensory sensitivities as well as restrictive and repetitive behaviours. Many theories have tried to explain all the symptoms and behaviours associated with autism. We focus on one recent theory – High, Inflexible Precision of Prediction Errors in Autism (HIPPEA). We aim to understand how much this theory fits the experiences of autistic individuals. We collected data through 21 online questionnaires and 8 follow-up interviews. One of our participants was a parent of an autistic child, and the remaining were adults who reported a diagnosis of autism. We analysed the data by thinking about how it fitted with what we already knew and by looking for new insights which came up. Our results suggest that autistic individuals can make generalisations but that this happens more slowly across both social and non-social areas. These generalisations are very reliant on detail – in computer terms, they are ‘pixelated’. This is in line with what HIPPEA suggests. We also showed that autistic individuals can be motivated to explore and engage socially, something that needs more consideration within HIPPEA. Overall, this study shows that HIPPEA can explain many autistic experiences, but that further refinement is needed.
      Citation: Autism
      PubDate: 2023-06-09T11:59:55Z
      DOI: 10.1177/13623613231176714
       
  • Feasibility and acceptability of a low-resource-intensive, transdiagnostic
           intervention for children with social-communication challenges in early
           childhood education settings

    • Free pre-print version: Loading...

      Authors: Michael Siller, Lindee Morgan, Sally Fuhrmeister, Quentin Wedderburn, Brooke Schirmer, Emma Chatson, Scott Gillespie
      Abstract: Autism, Ahead of Print.
      Preschool classrooms provide a unique context for supporting the development of children with social-communication challenges. This study is an uncontrolled clinical trial of an adapted professional development intervention for preschool teachers (Social Emotional Engagement-Knowledge & Skills-Early Childhood). Social Emotional Engagement-Knowledge & Skills-Early Childhood is a low-resource-intensive, transdiagnostic intervention to address the learning needs of children with social-communication challenges and consists of four asynchronous online modules and three synchronous coaching sessions. The current research evaluated the feasibility and acceptability of intervention and research procedures, implemented in authentic early childhood education settings. Participants included one teacher and one target child with social-communication challenges from 25 preschool classrooms, sampled to maximize variability. Overall, the current research revealed high levels of feasibility, with 9 out of 10 benchmarks met: (a) procedures for participant recruitment reliably identified a neurodiverse sample of children with teacher-reported social-communication challenges; (b) teachers showed high levels of program engagement and Social Emotional Engagement-Knowledge & Skills-Early Childhood completion (76%); and (c) results revealed a robust pattern of gains in Social Emotional Engagement-Knowledge & Skills-Early Childhood classrooms and associations among key outcome measures (including active engagement, student teacher relationship, social-communication competencies). Implications for the design of a subsequent, larger effectiveness-implementation hybrid trial (Type 1) are discussed.Lay AbstractPreschool classrooms provide a unique context for supporting the development of children with social-communication challenges. This study evaluates the feasibility and acceptability of an adapted professional development intervention for preschool teachers (Social Emotional Engagement-Knowledge & Skills-Early Childhood). Social Emotional Engagement-Knowledge & Skills-Early Childhood is a low-resource-intensive, transdiagnostic intervention to address the learning needs of children with a broad range of social-communication challenges in authentic preschool classrooms. The intervention consists of four asynchronous online modules and three synchronous coaching sessions. Participants included one teacher and one target child with social-communication challenges from 25 preschool classrooms from private childcare, Head Start, and public Pre-K programs. Results reveal high levels of Social Emotional Engagement-Knowledge & Skills-Early Childhood feasibility, with 9 out of 10 feasibility benchmarks met: (a) procedures for participant recruitment reliably identified a neurodiverse sample of children with teacher-reported social-communication challenges; (b) teachers showed high levels of program engagement and Social Emotional Engagement-Knowledge & Skills-Early Childhood completion (76%); and (c) results revealed a robust pattern of gains in Social Emotional Engagement-Knowledge & Skills-Early Childhood classrooms and associations among key outcome measures (including active engagement, student–teacher relationship, social-communication competencies). This research prepares a subsequent, larger effectiveness-implementation hybrid trial (Type 1) that investigates the effectiveness of Social Emotional Engagement-Knowledge & Skills-Early Childhood for improving child outcomes and explores facilitators and barriers of program implementation and sustainability.
      Citation: Autism
      PubDate: 2023-06-09T06:38:10Z
      DOI: 10.1177/13623613231179289
       
  • Prevalence of current smoking and association with meeting 24-h movement
           

    • Free pre-print version: Loading...

      Authors: Paige Laxton, Sean Healy, Benjamin Brewer, Freda Patterson
      Abstract: Autism, Ahead of Print.
      This study aimed to identify the prevalence of current smoking and examine the association between meeting combinations of the 24-h movement guidelines and current smoking in autistic adults. This cross-sectional study administered an electronic survey to a national sample of autistic adults in the United States. The study outcome was current smoking. Independent variables included the 24-h movement behaviors. Multivariable statistical modeling was used to assess the study aims. The study sample (n = 259) had a mean age of 31.05 years (standard deviation = 7.70), 58.7% were male, 11.2% were fully independent, and 35.5% were current smokers. Current smokers met significantly fewer 24-h movement guidelines than non-smokers (mean = 1.52 (standard deviation = 0.73) vs mean= 1.93 (standard deviation = 0.88), respectively, t = 3.77, p 
      Citation: Autism
      PubDate: 2023-06-09T06:30:30Z
      DOI: 10.1177/13623613231178571
       
  • Dental desensitization by dentists and occupational therapists for
           autistic adults: A pilot study

    • Free pre-print version: Loading...

      Authors: Patricia Castaño Novoa, Jacobo Limeres Posse, Eliane García Mato, Iván Varela Aneiros, María Teresa Abeleira Pazos, Pedro Diz Dios, Berta Rivas Mundiña
      Abstract: Autism, Ahead of Print.
      The aim of this pilot study was to assess the efficacy of a desensitization program developed by dentists and occupational therapists, targeted at autistic adults, to encourage their cooperation in the dental setting. The study group consisted of 18 individuals with autism (10 men and 8 women, aged 18–45 years). The patients underwent a baseline examination, after which they were progressively exposed to oral examination maneuvers and ultimately dental procedures. To this end, the participants engaged in a weekly desensitization session performed by an occupational therapist and a monthly assessment session by a dentist applying the Frankl scale, for a maximum period of 30 weeks. During the first session, 44% of the participants completed all oral examination procedures, reaching 94% by the fourth visit and 100% by the seventh visit. None of the participants completed a simple dental treatment up to the third session, subsequently increasing the percentage progressively until reaching a maximum of 61% in the seventh visit. In conclusion, a dental desensitization program implemented by dentists and occupational therapists could help in performing oral examinations and simple therapeutic procedures for a considerable percentage of adults with autism, without having to resort to pharmacological behavioral control techniques.Lay abstractManaging patients with autism in the dental clinic often requires resorting to pharmacological behavioral control techniques, including general anesthesia. References in the literature to desensitization programs are scarce and focus on training children with autism to undergo oral examinations and preventive procedures. This study shows that a dental desensitization program implemented by dentists and occupational therapists could help in performing not only oral examinations but also simple dental therapeutic procedures for a considerable percentage of adults with autism, without using a pharmacological intervention (sedation or general anesthesia).
      Citation: Autism
      PubDate: 2023-06-05T11:12:23Z
      DOI: 10.1177/13623613231173757
       
  • Short report on navigating access to care for Medicaid-enrolled autistic
           youth and young adults: Examining accrual of intellectual disability
           diagnoses in adolescence

    • Free pre-print version: Loading...

      Authors: Meghan E Carey, Katherine Ardeleanu, Steven C Marcus, Sha Tao, David Mandell, Andrew J Epstein, Lindsay L Shea
      Abstract: Autism, Ahead of Print.
      Medicaid is a major insurer of autistic people. However, during the transition to adulthood, autistic individuals are more likely than people with intellectual disability to lose their Medicaid benefits. Individuals with intellectual disability may have greater success maintaining Medicaid coverage during this time because most states provide coverage to individuals with intellectual disability throughout adulthood, which is not the case for autism. Using national Medicaid data from 2008 to 2016, we estimated the probability of intellectual disability diagnosis accrual among autistic Medicaid beneficiaries. Medicaid beneficiaries ages 8 to 25 with 1+ inpatient or 2+ outpatient autism spectrum disorder claims, but no intellectual disability claim, in a 12-month eligibility period were included. We used a person-month discrete-time proportional hazards model. Disruptions in Medicaid coverage were operationalized as 2+ consecutive months of no coverage before coverage resumed (yes/no). One in five autistic individuals ages 8–25 accrued an intellectual disability diagnosis. The probability of accruing an intellectual disability diagnosis was higher among autistic individuals who had disruptions in Medicaid coverage compared to those without disruptions, and peaked at age 21 (during the transition to adulthood). Expanding Medicaid to cover autistic people of all ages could decrease the need for intellectual disability diagnosis accrual and improve health outcomes for autistic adults.Lay abstractWhat is known' In most states, Medicaid waivers provide individuals with an intellectual disability diagnosis generous healthcare coverage throughout adulthood. By comparison, fewer Medicaid programs are available for autistic individuals, and they are more likely to experience disruptions, or gaps, in Medicaid coverage and subsequently not re-enroll.What this paper adds' One in five autistic individuals with Medicaid coverage between ages 8 and 25 accrued a new intellectual disability diagnosis. The probability of a new intellectual disability diagnosis was higher among those who had previous disruptions in Medicaid coverage.Implications for research and policy. Expanding Medicaid to cover autistic people of all ages could decrease the need for intellectual disability diagnosis accrual. Input from autistic individuals and their families regarding their health insurance access and healthcare experiences is critically important to understanding next steps for research.
      Citation: Autism
      PubDate: 2023-06-05T07:00:08Z
      DOI: 10.1177/13623613231177559
       
  • The effect of autistic traits on prosocial behavior: The chain mediating
           role of received social support and perceived social support

    • Free pre-print version: Loading...

      Authors: Shuhua Zhang, Hong Li, Hai Li, Shuo Zhao
      Abstract: Autism, Ahead of Print.
      There is growing evidence that the defining characteristics of autism spectrum disorder are distributed across the general population; therefore, understanding the correlates of prosocial behavior in individuals with high levels of autistic traits could shed light on autism spectrum disorder and prosocial behavior. In this study, the mechanism underlying the influence of individuals’ autistic traits on their prosocial behavior was explored by conducting a questionnaire survey of 414 Chinese college students. The results showed that autistic traits can influence individuals’ prosocial behavior not only through the separate effects of received social support and perceived social support but also through the chain mediating effects of received social support and perceived social support; however, the direct effect of autistic traits on individuals’ prosocial behavior is not significant. This study is conducive to understanding the internal mechanism underlying the relationship between autistic traits and prosocial behavior. Future work is required to further investigate the clinical autism spectrum disorder samples and cross-cultural applicability of the model found in this study.Lay abstractAutistic traits are known to be associated with a set of core symptoms of autism spectrum disorder. The impact of autistic traits on prosocial behavior, including a consideration of the role of social support, has never been explored. We investigated whether and how social support mediates the autistic trait–prosocial behavior relationship. We found that autistic traits can influence prosocial behavior not only through received social support and perceived social support but also indirectly through the chain mediating effects of received social support and perceived social support. This study contributes to the understanding of how and to what extent prosocial behavior is influenced by autistic traits. Future work is required to further investigate the clinical autism spectrum disorder samples and cross-cultural applicability of the model found in this study.
      Citation: Autism
      PubDate: 2023-05-30T06:01:27Z
      DOI: 10.1177/13623613231177776
       
  • The impact of COVID-19 on receipt of health services among children with
           and without autism

    • Free pre-print version: Loading...

      Authors: Sophie Brunt, Eleonora Sadikova, Jessica Pappagianopoulos, Micah O Mazurek
      Abstract: Autism, Ahead of Print.
      The COVID-19 pandemic disrupted a range of health services for children across the United States. Autistic children have well-documented deficits in health-related services compared to nonautistic children. Parents of autistic children reported an increase in mental health and behavior problems with the onset of the pandemic, increasing the need for supportive services. The current study used data from the National Survey of Children’s Health from 2019 and 2020 to conduct logistic regressions predicting the likelihood of having unmet service needs before and after the onset of the pandemic. Results suggested that autistic children were more likely to have unmet medical, dental, and mental health service needs across years compared to nonautistic children, but there were no interactions by year. All children experienced an increased likelihood of having unmet needs from pre- to post-pandemic. Results suggest that although the pandemic disrupted services across the board, autistic children lacked health services regardless of the pandemic, pointing to persisting disparities in service receipt. A discussion of ongoing barriers to services and issues related to virtual services is included. Future research should further investigate the feasibility of virtual services as well as ways of reducing barriers to all services for autistic children.Lay abstractThe COVID-19 pandemic disrupted doctor’s and dental visits, mental health treatments, and other special therapies for children across the United States. Prior research has found that autistic children were more likely to lack these services even before the pandemic, but they experienced more mental health and behavior problems with the onset of the pandemic, increasing the need for these services. This study analyzed data from before (2019) and after (2020) the onset of the pandemic to determine whether autistic children had even more severe disruptions in services after the pandemic started compared to nonautistic children. We found that autistic children were more likely to have unmet medical, dental, and mental health needs in both 2019 and 2020. Overall, children experienced increased disruptions from 2019 to 2020, but this did not differ by diagnosis. Our results suggest that there are persisting gaps in autistic children’s healthcare regardless of the pandemic. We discuss issues surrounding barriers to services for autistic children and issues surrounding virtual services, such as teletherapy. Future research should further explore how to reduce barriers to services for autistic children, including virtual and in-person services.
      Citation: Autism
      PubDate: 2023-05-27T05:37:13Z
      DOI: 10.1177/13623613231176930
       
  • Motor deficits in autism differ from that of developmental coordination
           disorder

    • Free pre-print version: Loading...

      Authors: Marie Martel, Livio Finos, Salam Bahmad, Eric Koun, Romeo Salemme, Sandrine Sonié, Pierre Fourneret, Christina Schmitz, Alice Catherine Roy
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorders and developmental coordination disorders are both associated with sensorimotor impairments, yet their nature and specificity remain unknown. In order to clearly distinguish the specificity between the two disorders, children with autism spectrum disorder or developmental coordination disorder presenting the same degree of motor impairment, thus homogeneous profiles, were examined in a reach-to-displace paradigm, which allows the integrity of two main aspects of motor control (anticipation/feedforward control and movement correction/feedback control) to be separately interrogated. We manipulated children’s previous knowledge of the weight of the object they were to displace: when known, participants could anticipate the consequences of the weight when reaching for the object, prior to contact with it, thus allowing for feedforward control. Conversely, when unknown prior to contact, participants had to cope with the object weight in the displacing phase of the movement, and use feedback control. Results revealed a preserved feedforward control, but an impaired movement execution (atypical slowness) in children with developmental coordination disorder, while children with autism spectrum disorder displayed the opposite pattern with an impaired feedforward control, but a preserved feedback one. These findings shed light on how specific motor impairments might differently characterize developmental disorders and call for motor rehabilitation programmes adapted to each population.Lay abstractA vast majority of individuals with autism spectrum disorder experience impairments in motor skills. Those are often labelled as additional developmental coordination disorder despite the lack of studies comparing both disorders. Consequently, motor skills rehabilitation programmes in autism are often not specific but rather consist in standard programmes for developmental coordination disorder. Here, we compared motor performance in three groups of children: a control group, an autism spectrum disorder group and a developmental coordination disorder group. Despite similar level of motor skills evaluated by the standard movement assessment battery for children, in a Reach-to-Displace Task, children with autism spectrum disorder and developmental coordination disorder showed specific motor control deficits. Children with autism spectrum disorder failed to anticipate the object properties, but could correct their movement as well as typically developing children. In contrast, children with developmental coordination disorder were atypically slow, but showed a spared anticipation. Our study has important clinical implications as motor skills rehabilitations are crucial to both populations. Specifically, our findings suggest that individuals with autism spectrum disorder would benefit from therapies aiming at improving their anticipation, maybe through the support of their preserved representations and use of sensory information. Conversely, individuals with developmental coordination disorder would benefit from a focus on the use of sensory information in a timely fashion.
      Citation: Autism
      PubDate: 2023-05-25T09:01:18Z
      DOI: 10.1177/13623613231171980
       
  • Letter to the Editor: A possible threat to data integrity for online
           qualitative autism research

    • Free pre-print version: Loading...

      Authors: Elizabeth Pellicano, Dawn Adams, Laura Crane, Calliope Hollingue, Connie Allen, Katherine Almendinger, Monique Botha, Tori Haar, Steven K Kapp, Elizabeth Wheeley
      Abstract: Autism, Ahead of Print.
      Researchers are increasingly relying on online methods for data collection, including for qualitative research involving interviews and focus groups. In this letter, we alert autism researchers to a possible threat to data integrity in such studies: “scammer” participants, who may be posing as autistic people and/or parents of autistic children in research studies, presumably for financial gain. Here, we caution qualitative autism researchers to be vigilant of potential scammer participants in their online studies and invite a broader discussion about the implications of such fraudulent acts.Lay abstractDoing research online, via Zoom, Teams, or live chat, is becoming more and more common. It can help researchers to reach more people, including from different parts of the world. It can also make the research more accessible for participants, especially those with different communication preferences. However, online research can have its downsides too. We have recently been involved in three studies in which we had in-depth discussions with autistic people and/or parents of autistic children about various topics. It turns out, though, that some of these participants were not genuine. Instead, we believe they were “scammer participants”: people posing as autistic people or parents of autistic children, possibly to gain money from doing the research. This is a real problem because we need research data that we can trust. In this letter, we encourage autism researchers to be wary of scammer participants in their own research.
      Citation: Autism
      PubDate: 2023-05-22T08:57:55Z
      DOI: 10.1177/13623613231174543
       
  • Associations between social activities and depressive symptoms in
           adolescents and young adults with autism spectrum disorder: Testing the
           indirect effects of loneliness

    • Free pre-print version: Loading...

      Authors: Ryan E Adams, Linnea Lampinen, Shuting Zheng, Virgina Sullivan, Julie Lounds Taylor, Somer L Bishop
      Abstract: Autism, Ahead of Print.
      To better understand the associations between social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder, this study utilized interpersonal theories of depression by accounting for both frequency of various social activities and perceptions of how well their time spent in these activities meet their needs and testing the indirect effects of loneliness in this association. To test these ideas, 321 participants who were recruited from the Simons Foundation Powering Autism Research for Knowledge (SPARK) research match registry and completed online measures of social activities, depressive symptoms, and loneliness. While the specific pattern was different for individual activities, it was found that those who felt that their current frequency of activities did not meet their needs had higher rates of depressive symptoms than those who felt they did meet their needs and that loneliness help to understand the indirect effects of the association between social activities and depressive symptoms. Overall, the findings suggest that how individuals feel about the time they are spending in social activities, such as with friends and in general social activities, could impact outcomes such as depression and loneliness.Lay AbstractPrevious studies have found that social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder are related. To better understand the relationship between these issues, this study examined the frequency of various types of social activities as well as if the participants felt that the frequency of time spent in the activity met their personal needs. In addition, the role of loneliness was tested as a possible way to understand the relationship between activities and depressive symptoms. To test these ideas, 321 participants who were recruited from the Simons Foundation Powering Autism Research for Knowledge (SPARK) research match registry and completed online measures of social activities, depressive symptoms, and loneliness. While the specific pattern was different for individual activities, it was found that those who felt that their current frequency of activities did not meet their needs had higher rates of depressive symptoms than those who felt they did meet their needs. Also, loneliness helps to understand relationship between social activities and depressive symptoms. The findings were discussed in light of previous study findings, interpersonal theories of depression, and clinical implications.
      Citation: Autism
      PubDate: 2023-05-22T08:44:14Z
      DOI: 10.1177/13623613231173859
       
  • Implementing school-based cognitive behavior therapy for anxiety in
           students with autism or suspected autism via a train-the-trainer approach:
           Results from a clustered randomized trial

    • Free pre-print version: Loading...

      Authors: Judy Reaven, Katherine Pickard, Allison T Meyer, Lisa Hayutin, Caitlin Middleton, Nuri M Reyes, Tanea Tanda, Aubyn Stahmer, Audrey Blakeley-Smith, Richard E Boles
      Abstract: Autism, Ahead of Print.
      Autistic youth frequently experience interfering anxiety, and schools may be an ideal setting to deliver mental health care. A type 1 hybrid-effectiveness, cluster randomized trial was used to examine the effectiveness of school-based Facing Your Fears compared to usual care. Change in provider cognitive behavior therapy knowledge and treatment fidelity (adherence and provider competence) were also examined. Seventy-seven interdisciplinary school providers across 25 elementary/middle schools were trained via a train-the-trainer approach. Eighty-one students, ages 8–14 years, with autism or suspected autism and anxiety participated. Students who received school-based Facing Your Fears displayed significantly greater reductions in anxiety compared to students in usual care according to caregiver and child report (Screen for Anxiety and Related Emotional Disorders). Significant reductions in total anxiety (p = 0.012), separation (p = 0.002), and social anxiety (p = 0.003) subscales occurred, according to parent report. Student self-report indicated significant reductions on the social anxiety subscales (p = 0.001). Interdisciplinary school providers demonstrated significantly increased cognitive behavior therapy knowledge following training (p 
      Citation: Autism
      PubDate: 2023-05-20T05:16:13Z
      DOI: 10.1177/13623613231175951
       
  • Community perspectives on the appropriateness and importance of support
           goals for young autistic children

    • Free pre-print version: Loading...

      Authors: Hannah Waddington, Hannah Minnell, Lee Patrick, Larah van Der Meer, Ruth Monk, Lisa Woods, Andrew JO Whitehouse
      Abstract: Autism, Ahead of Print.
      There is little research regarding autistic adult, parent and professional perspectives on support goals for young autistic children. A total of 87 autistic adults, 159 parents of autistic children, and 80 clinical professionals living in New Zealand and Australia completed a survey about the appropriateness and importance of common support goals for young autistic children. Goals related to the adult supporting the child, the reduction and replacement of harmful behaviours, and improving child quality of life were the highest priority across participant groups, while goals related to child autism characteristics, play and academic skills were the lowest priority. Compared to parents and/or professionals, autistic adults gave lower priority ratings for play skills, autism characteristics and participation goals and were more likely to rate these goal domains as inappropriate. More research is needed to understand the underlying reasons for these similarities and differences.Lay abstractResearchers do not know much about what autistic adults, parents and professionals think about support goals for young autistic children. People’s views of support goals might also be influenced by their beliefs about early support more generally. This survey involved 87 autistic adults, 159 parents of autistic children and 80 clinical professionals living in New Zealand and Australia. We asked participants questions about themselves and what they thought about early support for young autistic children in general. We then asked participants to rate whether different support goals were appropriate for young autistic children and, if they were appropriate, to rate their level of priority. We found that autistic adults, parents and professionals all rated goals about the adult changing to better support the child, reducing and replacing harmful behaviours and improving the child’s quality of life as the highest priorities. They all rated goals about autism characteristics, play skills and academic skills as the lowest priorities. Compared to parents and/or professionals, autistic adults gave lower priority ratings for play skills, autism characteristics and participation goals. Autistic adults were also more likely to rate goals related to play skills and autism characteristics as inappropriate. While these three participant groups generally agreed on the order of priority of early support goals for young autistic children, autistic adults found goals related to autism characteristics, play and/or participation to be an even lower priority and less appropriate than parents and professionals.
      Citation: Autism
      PubDate: 2023-05-19T05:53:56Z
      DOI: 10.1177/13623613231168920
       
  • Evaluation of an adapted virtual training for master trainers of the WHO
           Caregiver Skills Training Program during the COVID-19 pandemic

    • Free pre-print version: Loading...

      Authors: Alaa T. Ibrahim, Afiqah Yusuf, Hannah Pickard, Pamela Dixon, Andy Shih, Stephanie Shire, Andrew Pickles, Mayada Elsabbagh
      Abstract: Autism, Ahead of Print.
      Significant barriers to training have been introduced by the COVID-19 pandemic, limiting in-person professional activities resulting in the development of the novel remote training. We developed and evaluated a remote training approach for master trainers of the Caregiver Skills Training Program. Master trainers support community practitioners, who in turn deliver the Caregiver Skills Training program to caregivers of children with developmental delays or disabilities. The aim of this study was to evaluate the remote training of master trainers on Caregiver Skills Training Program. Twelve out of the 19 practitioners who enrolled in the training completed the study. The training consisted of a 5-day in-person session completed prior to the pandemic, followed by supporting participants’ ability to identify Caregiver Skills Training Program strategies through supported coding of seven video recordings over 7 weekly meetings and group discussions and ended with participants independently coding a set of 10 videos for Caregiver Skills Training Program strategies. We found that master trainers’ scoring reliability varied over 7 weeks of supported coding. All but one participant reached moderate or good independent scoring reliability despite a lack of ability to practice the Caregiver Skills Training Program strategies with children due to the pandemic. Taken together, our findings illustrate the feasibility and value of remote training approaches in implementing interventions.Lay AbstractThe COVID-19 pandemic interrupted in-person professional activities. We developed and evaluated a remote training approach for master trainers of the Caregiver Skills Training Program. Master trainers support community practitioners, who in turn deliver the Caregiver Skills Training Program to caregivers of children with developmental delays or disabilities. The Caregiver Skills Training Program teaches caregivers how to use strategies to enhance learning and interactions during everyday play and home activities and routines with their child. The aim of this study was to evaluate the remote training of master trainers on Caregiver Skills Training Program. Twelve out of the 19 practitioners who enrolled in the training completed the study. The training consisted of a 5-day in-person session completed prior to the pandemic, followed by supporting participants’ ability to identify Caregiver Skills Training Program strategies through coding of video recordings over 7 weekly meetings and group discussions and ended with participants independently coding a set of 10 videos for Caregiver Skills Training Program strategies. We found all but one participant was able to reliably identify Caregiver Skills Training Program strategies from video recordings despite a lack of ability to practice the Caregiver Skills Training Program strategies with children due to the pandemic. Taken together, our findings illustrate the feasibility and value of remote training approaches in implementing interventions.
      Citation: Autism
      PubDate: 2023-05-18T04:25:22Z
      DOI: 10.1177/13623613231173758
       
  • How do primary care providers and autistic adults want to improve their
           primary care' A Delphi-study

    • Free pre-print version: Loading...

      Authors: Eva B Warreman, Wietske A Ester, Hilde M Geurts, Robert RJM Vermeiren, Laura A Nooteboom
      Abstract: Autism, Ahead of Print.
      Autistic adults often experience health problems and a range of healthcare barriers. Therefore, the aim of this study was to evaluate barriers and explore how primary care providers and autistic adults want to improve their primary healthcare. Semi-structured interviews with three autistic adults, two parents of autistic children and six care providers, were performed to evaluate barriers in Dutch healthcare. Next, in a three-round Delphi-study, 21 autistic adults and 20 primary care providers rated barriers in primary healthcare and assessed recommendations based on usefulness and feasibility. In the thematically analysed interviews, 20 barriers in Dutch healthcare for autistic people were identified. In the Delphi-study, the primary care providers rated the negative impact of most barriers lower than the autistic adults. The Delphi-study resulted in 22 recommendations to improve primary healthcare for autistic adults, focused on: primary care providers (i.e. education in collaboration with autistic people), autistic adults (i.e. improvement of preparation for general practitioner-appointments) and organization of general practice (i.e. enhancement of continuity in care). In conclusion, primary care providers seem to assess healthcare barriers as less impactful than autistic adults. With the use of the Delphi-method, useful and feasible recommendations to improve primary healthcare for autistic adults were identified, based on the needs of autistic adults and primary care providers.Lay abstractAutistic adults often encounter different types of healthcare barriers. Because autistic adults also have an increased risk for health problems, the aim of this study was to evaluate barriers and to explore how primary care providers and autistic adults want to improve their primary healthcare. In this co-created study, semi-structured interviews with three autistic adults, two parents of autistic children and six care providers were performed to evaluate barriers in Dutch healthcare. Next, in the survey-study (using the Delphi-method including controlled feedback in three consecutive questionnaires), 21 autistic adults and 20 primary care providers rated the impact of barriers and the usefulness and feasibility of recommendations to improve primary healthcare. In the interviews, 20 barriers in Dutch healthcare for autistic people were found. In the survey-study, the primary care providers rated the negative impact of most barriers lower than the autistic adults. This survey-study resulted in 22 recommendations to improve primary healthcare focused on: primary care providers (including education in collaboration with autistic people), autistic adults (including improvement of preparation for general practitioner-appointments) and organization of general practice (including improvement of continuity in care). In conclusion, primary care providers seem to view healthcare barriers as less impactful than autistic adults. In this co-created study, recommendations to improve primary healthcare for autistic adults were identified, based on the needs of autistic adults and primary care providers. These recommendations provide a basis for primary care providers, autistic adults and their support network to start conversations about, for example, strategies to improve primary care providers’ knowledge, autistic adults’ preparation for a general practitioner-appointment and organization of primary care.
      Citation: Autism
      PubDate: 2023-05-17T05:08:32Z
      DOI: 10.1177/13623613231172865
       
  • Trajectory research in children with an autism diagnosis: A scoping review

    • Free pre-print version: Loading...

      Authors: Stephen J Gentles, Elise C Ng-Cordell, Michelle C Hunsche, Alana J McVey, E Dimitra Bednar, Michael G DeGroote, Yun-Ju Chen, Eric Duku, Connor M Kerns, Laura Banfield, Peter Szatmari, Stelios Georgiades
      Abstract: Autism, Ahead of Print.
      Researchers increasingly employ longitudinal trajectory methods to understand developmental pathways of people on the autism spectrum across the lifespan. By assessing developmental or health-related outcome domains at three or more timepoints, trajectory studies can characterize their shape and varying rates of change over time. The purpose of this scoping review was to identify and summarize the published breadth of research that uses a trajectory study design to examine development in children (to age 18 years) diagnosed with autism. Using a systematic search and screening procedure, 103 studies were included. This review summarizes methodological characteristics across studies including the varying statistical approaches used. A series of figures maps where published research is available across 10 outcome domains and the ages over which children have been followed. Evidence gaps, informed by the perspectives of the autistic and caregiver stakeholders that were engaged in this review, are discussed. We recommend that future trajectory research addresses the absence of studies from low- and middle-income countries, considers longitudinal assessment of outcome domains that caregivers and autistic people consider meaningful, and plans follow-up periods with assessment timepoints that cover the gaps in ages where more outcome-specific data are needed.Lay AbstractThe types of outcomes studied in children on the autism spectrum include clinical characteristics, such as social functioning, communication, language, or autism symptoms. Research that measures these outcomes at multiple timepoints is useful to improve our understanding of what to expect as children develop. In trajectory studies, researchers assess outcomes at three or more timepoints. This method has advantages over two-timepoint studies because it allows researchers to describe changes in the speed of development, such as accelerations, plateaus, or slowdowns. We identified and reviewed 103 published trajectory studies in children (to age 18 years) with an autism diagnosis. Importantly, we did not include studies of treatments or their effects, nor did we summarize the results of studies. Instead, this review summarizes the characteristics of the available published research, including the methods used, the many different outcomes that have been studied over time and the ages over which they have been studied. This summary may be of interest to autistic people and caregivers (parents) who want to know about the existence of research that provides answers about what to expect during an autistic child’s development. We have recommended that future trajectory research efforts try to make up for the lack of studies from low- and middle-income countries; that more attention is given to the following outcomes that are meaningful to caregivers and autistic people; and to try to fill in the age gaps where more outcome-specific data are needed.
      Citation: Autism
      PubDate: 2023-05-17T04:56:52Z
      DOI: 10.1177/13623613231170280
       
  • Non-specialist delivery of the WHO Caregiver Skills Training Programme for
           children with developmental disabilities: Stakeholder perspectives about
           acceptability and feasibility in rural Ethiopia

    • Free pre-print version: Loading...

      Authors: Tigist Zerihun, Mersha Kinfe, Kamrun Nahar Koly, Rehana Abdurahman, Fikirte Girma, Charlotte Hanlon, Petrus J de Vries, Rosa A Hoekstra
      Abstract: Autism, Ahead of Print.
      Autism and other developmental disabilities are common in low- and middle-income countries. The World Health Organization developed the caregiver skills training programme to address the needs of families having children with developmental disabilities globally. This study explored the acceptability and feasibility of the caregiver skills training programme facilitated by non-specialists in rural Ethiopia, where contextual factors such as poverty, stigma and low literacy may affect training delivery. In-depth interviews were conducted with caregivers (n = 19) and four focus groups with non-specialist facilitators (n = 8) in two rural pilot tests of the caregiver skills training programme. Results suggested that participants experienced the caregiver skills training programme as acceptable and relevant for their context but suggested some modifications to improve the programme. Caregivers’ accounts showed that facilitation by non-specialists was acceptable; facilitators emphasised the importance of supervision throughout the programme. Participants indicated that the home visit and group training modalities were acceptable and feasible. Facilitators indicated that some caregiver skills training programme topics were difficult to explain to caregivers; the concept of formalised play between caregiver and child was particularly foreign to caregivers. Lack of available toys made it difficult to practise some of the caregiver skills programme training exercises. These findings may have relevance to non-specialist delivery of the caregiver skills programme training and other parent-mediated interventions in low-resource contexts.Lay abstractChildren with developmental disabilities including autism who live in low- and middle-income countries have very limited access to care and intervention. The World Health Organization initiated the caregiver skills training programme to support families with children with developmental disabilities. In Ethiopia, contextual factors such as poverty, low literacy and stigma may affect the success of the programme. In this study, we aimed to find out if the caregiver skills training programme is feasible to deliver in rural Ethiopia and acceptable to caregivers and programme facilitators. We trained non-specialist providers to facilitate the programme. Caregivers and non-specialist facilitators were asked about their experiences in interviews and group discussions. Caregivers found the programme relevant to their lives and reported benefits of participation. Facilitators highlighted the skills they had acquired but also emphasised the importance of support from supervisors during the programme. They described that some caregiver skills training programme topics were difficult to teach caregivers. In particular, the idea of play between caregiver and child was unfamiliar to many caregivers. Lack of available toys made it difficult to practise some of the caregiver skills training programme exercises. Participants indicated that the home visits and group training programme components of the caregiver skills training were acceptable and feasible, but there were some practical barriers, such as transportation issues and lack of time for homework practice. These findings may have importance to non-specialist delivery of the caregiver skills training programme in other low-income countries.
      Citation: Autism
      PubDate: 2023-05-17T04:51:07Z
      DOI: 10.1177/13623613231162155
       
  • Mindfulness-based stress reduction for autistic adults: A feasibility
           study in an outpatient context

    • Free pre-print version: Loading...

      Authors: Hanna Agius, Anne-Kristina Luoto, Anna Backman, Carina Eriksdotter, Nitya Jayaram-Lindström, Sven Bölte, Tatja Hirvikoski
      Abstract: Autism, Ahead of Print.
      Autistic adults report high stress and impaired ability to cope with stressors. Mindfulness-based stress reduction targets individual’s own resources to regulate stress responses. An open feasibility study was conducted in an outpatient context, recruiting autistic adults without intellectual disability. The intervention, guided by trained mindfulness-based stress reduction teachers, followed the contents of the standard manual while adapting the delivery to autistic adults’ needs. The total sample comprised of N = 50 participants; N = 43 (86%) attended at least one session, and N = 34 of these (79%) completed the intervention. Participants found mindfulness-based stress reduction logical, likely to lead to improvement and recommendable to autistic peers. No serious adverse events were reported. Measures of preliminary effectiveness indicated reduced symptoms of stress (p 
      Citation: Autism
      PubDate: 2023-05-16T07:52:52Z
      DOI: 10.1177/13623613231172809
       
  • Parent, child, and family outcomes following Acceptance And Commitment
           Therapy for parents of autistic children: A randomized controlled trial

    • Free pre-print version: Loading...

      Authors: Andrea L Maughan, Yona Lunsky, Johanna Lake, Jennifer S Mills, Kenneth Fung, Lee Steel, Jonathan A Weiss
      Abstract: Autism, Ahead of Print.
      Emerging research shows that Acceptance and Commitment Therapy (ACT) may improve mental health for caregivers. Parents of autistic children, adolescents, and adults (N = 54) were randomly assigned to either complete a brief group-based ACT intervention or remain on the waitlist. Participants completed surveys immediately prior to randomization, and 3-, 7-, and 17-weeks post-randomization. The primary outcome was depression symptoms and secondary outcomes included stress, goal attainment, positive affect, ACT psychological processes, child mental health, and family functioning. Mixed effects linear models testing Group × Time interaction indicated the Treatment group (n = 27) demonstrated greater post-intervention improvements than the Waitlist group (n = 27) in parent depression (p = .03, d = −0.64) and family distress (p = .04, d = −0.57). Treatment group parents also reported greater short-term gains in positive affect (p =
      Citation: Autism
      PubDate: 2023-05-11T09:10:59Z
      DOI: 10.1177/13623613231172241
       
  • Barriers to healthcare for Australian autistic adults

    • Free pre-print version: Loading...

      Authors: Samuel RC Arnold, Georgia Bruce, Janelle Weise, Caroline J Mills, Julian N Trollor, Kristy Coxon
      Abstract: Autism, Ahead of Print.
      Barriers to healthcare experienced by Australian autistic adults have not been previously explored. We conducted a cross-sectional investigation of barriers to healthcare and associated factors from a subtle realism perspective. Perceived barriers to healthcare were obtained from the Barriers to Healthcare Checklist Short-Form (BHC). A total of 263 autistic and 70 non-autistic individuals completed the BHC. On average, autistic adults reported more barriers to healthcare (4.58) than non-autistic adults (0.76). Gender diversity, higher levels of generalised anxiety, greater global disability and less satisfaction with social support contributed to the experience of barriers to healthcare in autistic participants in regression modelling. Australian autistic adults face substantial barriers to healthcare. Understanding these barriers provides an opportunity to develop approaches to improve access; such as co-designing a healthcare access roadmap for autistic adults, with co-designed policies and practices which advocate for the needs of autistic adults.Lay abstractThis study looked at how Australian autistic and non-autistic adults experience barriers to healthcare. We asked autistic and non-autistic adults to complete the Barriers to Healthcare Checklist Short-Form (BHC). We analysed data from 263 autistic adults and 70 non-autistic adults. We found that autistic adults experienced more barriers to healthcare than non-autistic adults. Gender diversity, feeling more anxious, having greater disability and feeling unsatisfied with social support contributed to barriers to healthcare in autistic participants. We recommend interventions such as developing and implementing a national action plan, similar to the National Roadmap for Improving the Health of People with Intellectual Disability (2021) to reduce barriers and address unmet healthcare needs of Australian autistic adults. We also recommend working with autistic adults to develop new policies and strategies, implementing environmental adaptations to health care facilities, and increasing Autism education opportunities for health professionals to address gaps in knowledge.
      Citation: Autism
      PubDate: 2023-05-10T09:18:34Z
      DOI: 10.1177/13623613231168444
       
  • Interpreting the results of explicit and applied theory of mind
           collectively in autistic children: A solution from Rasch analysis

    • Free pre-print version: Loading...

      Authors: Shih-Chieh Lee, Chien-Yu Huang, I-Ning Fu, Kuan-Lin Chen
      Abstract: Autism, Ahead of Print.
      Multidimensional theory of mind assessments should include items assessing both explicit theory of mind (theory of mind knowledge) and applied theory of mind (application of theory of mind knowledge in real-life contexts). However, the two theory of mind scores cannot be interpreted collectively to identify children having mismatched explicit and applied theory of mind due to the lack of links between the two scores. To map the information between two theory of mind scores, data of 221 autistic children aged 3–12 years were extracted. Items of the Theory of Mind Task Battery and Theory of Mind Inventory-2 were used to respectively assess the explicit and applied theory of mind. Rasch analysis and correlation coefficients were used to examine the model fits/dimensionality and relationships. After the removal of misfit items, the remaining 45 items showed satisfactory model fits (infit and outfit mean squares 
      Citation: Autism
      PubDate: 2023-05-10T09:09:12Z
      DOI: 10.1177/13623613231170698
       
  • A scoping review of autism research conducted in Central Asia: Knowledge
           gaps and research priorities

    • Free pre-print version: Loading...

      Authors: Rano Zakirova-Engstrand, Gulnoza Yakubova
      Abstract: Autism, Ahead of Print.
      Very little is known about the status of autism research in Central Asia. The purpose of this scoping review was to examine the scope and focus of the peer-reviewed research studies conducted with autistic people and their families in five Central Asian countries—Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. The electronic databases of EBSCO Host and Web of Science were used for systematic search of literature. Eleven articles that met eligibility criteria were included in the review and analyzed for topics and research areas outlined in the Interagency Autism Coordinating Committee Strategic Plan. Ten of these studies were conducted in Kazakhstan and one in Uzbekistan using qualitative, quantitative, and mixed-methods research designs. Five of the seven research areas—Diagnosis, Biology, Risk Factors, Services, and Treatment and Interventions—were represented in these studies, while there were no studies identified in the areas of Lifespan Issues or Infrastructure and Surveillance, highlighting a gap in research. None of the studies reported co-authorship of scientists from Central Asian countries. The review identified knowledge gaps and research needs to guide future research in autism in Central Asia to address the needs of autistic individuals and their families living in this region.Lay abstractVery little is known about the status of autism research in Central Asia. Through the library databases, we identified and reviewed 11 scientific studies conducted with autistic people and their families in five Central Asian countries—Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. Of the 11 studies, 10 were conducted in Kazakhstan and 1 in Uzbekistan. Within these limited number of research studies, different topics such as diagnosis, risk factors of autism, biology, and various service and intervention areas were addressed. We identified several knowledge gaps and research priorities to address the needs of autistic people, their families, and professionals in Central Asia.
      Citation: Autism
      PubDate: 2023-05-10T08:58:29Z
      DOI: 10.1177/13623613231170553
       
  • The relationships among executive functions, self-regulation, and physical
           exercise in children with autism spectrum disorder

    • Free pre-print version: Loading...

      Authors: Andy CY Tse, Venus HL Liu, Paul H Lee, David I Anderson, Kimberley Dawn Lakes
      Abstract: Autism, Ahead of Print.
      Physical exercise is widely reported beneficial to executive functions in children with autism spectrum disorder. However, its impact on self-regulation in the population remains unknown. This study is to test whether two types of physical exercise (cognitively engaging vs non-cognitively engaging) benefited self-regulation and whether the social, emotional, and physical needs of an individual mediated the exercise–executive function and exercise–self-regulation relationships. Sixty-four children diagnosed with autism spectrum disorder were randomly assigned into 1 of 3 groups: learning to ride a bicycle (n = 23), stationary cycling (n = 19), or an active control with walking (n = 22). Two executive functions (flexibility and inhibition), self-regulation and the mediating roles of perceived social support, enjoyment, stress, physical self-efficacy, and perceived physical fitness were assessed. Participants in the learning to ride a bicycle group significantly improved their executive functions (p values 
      Citation: Autism
      PubDate: 2023-05-10T08:49:02Z
      DOI: 10.1177/13623613231168944
       
  • All-cause mortality and suicide mortality in autistic individuals: An
           entire population longitudinal study in Taiwan

    • Free pre-print version: Loading...

      Authors: Shih-Jen Tsai, Wen-Han Chang, Chih-Ming Cheng, Chih-Sung Liang, Ya-Mei Bai, Ju-Wei Hsu, Kai-Lin Huang, Tung-Ping Su, Tzeng-Ji Chen, Mu-Hong Chen
      Abstract: Autism, Ahead of Print.
      Evidence suggests increased mortality rates among autistic individuals. However, risks of mortality, including natural-cause, suicide, and accident mortalities, among autistic individuals remain unclear. Among the entire Taiwanese population (N = 29,253,529), between 2003 and 2017, 45,398 autistic individuals were identified and 1:4 matched to 181,592 non-autistic individuals based on birth year and sex. All-cause mortality, including natural-cause, accident, and suicide mortalities, was assessed from 2003 to 2017 between the two cohorts. Cox regression models were used to investigate the mortality risk between autistic and non-autistic individuals. Autistic individuals had increased likelihoods (hazard ratio, 95% confidence interval) of all-cause mortality (3.43, 3.00–3.92), natural-cause mortality (4.73, 3.99–5.60), and suicide mortality (3.67, 2.37–5.68) compared with non-autistic individuals. In particular, autistic males were more likely to die by suicide (hazard ratio: 3.81, 95% confidence interval: 2.37–6.13), and autistic females were more likely to die of accident (hazard ratio: 5.07, 95% confidence interval: 2.54–10.13) compared with non-autistic individuals. Appropriate and effective medical and mental health care is recommended for autistic individuals.Lay abstractOur study was the first population-based study in an Asian country to investigate the mortality rates among autistic individuals. Among the entire Taiwanese population (N = 29,253,529), between 2003 and 2017, 45,398 autistic individuals were identified and 1:4 age-/sex-matched to 181,592 non-autistic individuals. We found that autistic individuals had increased risks of all-cause mortality, natural-cause mortality, and suicide mortality compared with non-autistic individuals. Furthermore, autistic males were more likely to die by suicide, and autistic females were more likely to die of accident compared with the non-autistic individuals.
      Citation: Autism
      PubDate: 2023-05-10T07:44:05Z
      DOI: 10.1177/13623613231167287
       
  • Studies pertaining to language impairment in school-age autistic
           individuals underreport participant socio-demographics: A systematic
           review

    • Free pre-print version: Loading...

      Authors: Teresa Girolamo, Lue Shen, Amalia Monroe-Gulick, Mabel L Rice, Inge-Marie Eigsti
      Abstract: Autism, Ahead of Print.
      Autism research tends to exclude racially and ethnically minoritized autistic individuals, limiting the quality of the evidence base for characterizing and diagnosing language impairment in racially and ethnically minoritized autistic individuals. This systematic review examines reporting practices for participant socio-demographics in studies pertaining to language impairment in autistic school-age individuals using age-referenced assessments. This review was preregistered (PROSPERO: CRD42021260394) and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses protocol. Database searches took place in August of 2021 in Linguistics and Language Behavior s, PsycINFO, PubMed, and the Directory of Open Access Journals, for publications during 1980–2021. Search terms included three essential concepts: autism, language, and age. Two coders independently screened and evaluated articles. Of qualifying studies (n = 59), 17 (29%) reported any information on participant race and ethnicity; in these studies, participants were at least 77% white. Thirty-two studies (54%) reported gender or sex; just 10 studies (17%) reported socio-economic status using multiple indicators. These findings indicate insufficient adherence to reporting guidelines and systematic exclusion of racially and ethnically minoritized. Future work must address replicable reporting and inclusion in autism research.Lay abstractAlthough exclusion of racially and ethnically minoritized autistic individuals from research is a long-standing issue, we have yet to determine how exclusion impacts areas of autism research important for identifying language impairment. Diagnosis depends on the quality of the evidence (i.e. research) and is often the pathway to gaining access to services. As a first step, we examined how research studies related to language impairment in school-age autistic individuals report participant socio-demographics. We analyzed reports using age-referenced assessments in English (n = 60), which are commonly used by both practitioners and researchers to diagnose or identify language impairment. Findings showed only 28% of studies reported any information on race and ethnicity; in these studies, most (at least 77%) of the participants were white. In addition, only 56% of studies reported gender or sex and specified what they were reporting (gender, sex, or gender identity). Just 17% reported socio-economic status using multiple indicators. Altogether, findings indicate broad issues with underreporting and exclusion of racially and ethnically minoritized individuals, which might overlay with other aspects of identity including socio-economic status. It is impossible to determine the extent and precise nature of exclusion without intersectional reporting. To ensure that language in autism research is representative of the autistic population, future research must implement reporting guidelines and broaden inclusion of who participates in research studies.
      Citation: Autism
      PubDate: 2023-05-09T05:37:10Z
      DOI: 10.1177/13623613231166749
       
  • Automated movement tracking of young autistic children during free play is
           correlated with clinical features associated with autism

    • Free pre-print version: Loading...

      Authors: Andrew Yuan, Maura Sabatos-DeVito, Alexandra L Bey, Samantha Major, Kimberly LH Carpenter, Lauren Franz, Jill Howard, Saritha Vermeer, Ryan Simmons, Jesse Troy, Geraldine Dawson
      Abstract: Autism, Ahead of Print.
      Autistic children’s play provides insights into social, communication, and other skills; however, methods for measuring these observations can be labor-intensive and rely on subjective judgment. This study explored whether children’s movement and location during play measured via automated video tracking correlates with clinical features. Movement tracking metrics of 164 autistic children (27–96 months old) during free play were analyzed in relation to standard assessments of cognitive, language, social-communication, and adaptive skills. Children with higher cognitive and language abilities were more likely to spend time in the center toy region and more slowly or never approached the region without toys. Children with higher autism-related features spent less time in the center. Children with lower daily living skills spent more time near the caregiver and those with lower overall adaptive and language skills approached the caregiver more quickly. Over 90% of autistic children representing a range of ages and skills provided analyzable movement data during play and those with higher cognitive, language, and adaptive skills displayed movement tracking patterns that reflect more sustained focus on toy play and independence from the caregiver. Results suggest that automated movement tracking is a promising complementary, objective method for assessing clinical variation during autistic children’s play.Lay AbstractPlay-based observations allow researchers to observe autistic children across a wide range of ages and skills. We recorded autistic children playing with toys in the center of a room and at a corner table while a caregiver remained seated off to the side and used video tracking technology to track children’s movement and location. We examined how time children spent in room regions and whether or not they approached each region during play related to their cognitive, social, communication, and adaptive skills to determine if tracking child movement and location can meaningfully demonstrate clinical variation among autistic children representing a range of ages and skills. One significant finding was that autistic children who spent more time in the toy-containing center of the room had higher cognitive and language abilities, whereas those who spent less time in the center had higher levels of autism-related behaviors. In contrast, children who spent more time in the caregiver region had lower daily living skills and those who were quicker to approach the caregiver had lower adaptive behavior and language skills. These findings support the use of movement tracking as a complementary method of measuring clinical differences among autistic children. Furthermore, over 90% of autistic children representing a range of ages and skills in this study provided analyzable play observation data, demonstrating that this method allows autistic children of all levels of support needs to participate in research and demonstrate their social, communication, and attention skills without wearing any devices.
      Citation: Autism
      PubDate: 2023-05-08T07:26:00Z
      DOI: 10.1177/13623613231169546
       
  • Effects of prefrontal transcranial direct current stimulation on social
           functioning in autism spectrum disorder: A randomized clinical trial

    • Free pre-print version: Loading...

      Authors: Yvonne MY Han, Melody MY Chan, Caroline KS Shea, Flora YM Mo, Klaire WK Yiu, Raymond CK Chung, Mei-Chun Cheung, Agnes S Chan
      Abstract: Autism, Ahead of Print.
      This triple-arm, double-blind, randomized clinical trial investigated the effect of multisession prefrontal transcranial direct current stimulation (tDCS) on social functioning in individuals with autism spectrum disorder (ASD). A total of 105 individuals (age 14–21 years) diagnosed with ASD were randomized into the active-tDCS, sham-tDCS, and waitlist control groups. The experimental group received 20 min of 1.5 mA tDCS stimulation (cathode: F3; anode: Fp2) for 10 days with concurrent computerized cognitive remediation training. Changes in overall social functioning, social communication, and restricted, repetitive behaviors (RRB) were measured by the Social Responsiveness Scale-2nd edition (SRS-2). Two-level hierarchical linear mixed-model analysis showed significant group*time interactions for SRS-2 total [F(2, 107.09) = 7.82; p = 0.001] and RRB [F(2, 90.26) = 5.62; p = 0.005] T-scores. When compared with the waitlist control group, the changes in scores were only significant in active-tDCS (SRS-2 total T-score p 
      Citation: Autism
      PubDate: 2023-05-08T07:14:42Z
      DOI: 10.1177/13623613231169547
       
  • Response format changes the reading the mind in the eyes test performance
           of autistic and non-autistic adults

    • Free pre-print version: Loading...

      Authors: Alliyza Lim, Neil Brewer, Denise Aistrope, Robyn L Young
      Abstract: Autism, Ahead of Print.
      The Reading the Mind in the Eyes Test (RMET) is a purported theory of mind measure and one that reliably differentiates autistic and non-autistic individuals. However, concerns have been raised about the validity of the measure, with some researchers suggesting that the multiple-choice format of the RMET makes it susceptible to the undue influence of compensatory strategies and verbal ability. We compared the performance of autistic (N = 70) and non-autistic (N = 71) adults on the 10-item multiple-choice RMET to that of a free-report version of the RMET. Both the autistic and non-autistic groups performed much better on the multiple-choice than the free-report RMET, suggesting that the multiple-choice format enables the use of additional strategies. Although verbal IQ was correlated with both multiple-choice and free-report RMET performance, controlling for verbal IQ did not undermine the ability of either version to discriminate autistic and non-autistic participants. Both RMET formats also demonstrated convergent validity with a well-validated adult measure of theory of mind. The multiple-choice RMET is, however, much simpler to administer and score.Lay abstractRecognizing and understanding the perspectives of others—also called theory of mind—is important for effective communication. Studies have found that some autistic individuals have greater difficulty with theory of mind compared to non-autistic individuals. One purported theory of mind measure is the Reading the Mind in the Eyes Test (RMET). This test presents participants with photographs of pairs of eyes and asks them to identify the emotion displayed by each pair of eyes from four choices. Some researchers have argued that the multiple-choice format of the RMET may not be an accurate measure of theory of mind, as participants could simply be guessing or using a process of elimination to select the correct answer. Participants may also be disadvantaged if they are not familiar with the specific emotion words used in the multiple-choice answers. We examined whether a free-report (open-ended) format RMET would be a more valid measure of theory of mind than the multiple-choice RMET. Autistic and non-autistic adults performed better on the multiple-choice RMET than the free-report RMET. However, both versions successfully differentiated autistic and non-autistic adults, irrespective of their level of verbal ability. Performance on both versions was also correlated with another well-validated adult measure of theory of mind. Thus, the RMET’s multiple-choice format does not, of itself, appear to underpin its ability to differentiate autistic and non-autistic adults.
      Citation: Autism
      PubDate: 2023-05-04T06:50:40Z
      DOI: 10.1177/13623613231167226
       
  • Mathematics performance, response time, and enjoyment of eighth-grade
           autistic students and their general education peers

    • Free pre-print version: Loading...

      Authors: Xin Wei, Susu Zhang, Jihong Zhang, Jennifer Yu
      Abstract: Autism, Ahead of Print.
      For autistic students receiving special education services, little is known about their relative strengths, weaknesses, and enjoyment across different math content areas; their overall math interest and persistence are also not well-studied. Using the 2017 eighth-grade National Assessment of Education Progress data, this study finds, relative to general education peers with the same math proficiency level, autistic students scored higher and exhibited faster speed in solving visuospatial problems (e.g. identifying figures), but scored lower on math word problems with complex language or social context. Autistic students reported a higher level of enjoyment in solving math problems related to finding areas of shapes or figures but a lower level of persistence than their non-autistic, general education peers. Our work points out the need to help autistic students overcome their weaknesses in word problems and develop their mathematical persistence.
      Citation: Autism
      PubDate: 2023-05-03T04:53:53Z
      DOI: 10.1177/13623613231168241
       
  • Knowledge of autism gained by learning from people through a local UK
           Autism Champion Network: A health and social care professional perspective
           

    • Free pre-print version: Loading...

      Authors: Louise Kirby, Katy-Louise Payne
      Abstract: Autism, Ahead of Print.
      Few autistic adults perceive that health and social care professionals have good understanding of autism. The countywide Autism Champion Network evaluated here, is an equal partnership of both staff across sectors (Autism Champions) and individuals with lived experience. Autism Champions take knowledge gained back to their teams to support continuous development of services to meet autistic need. This evaluation aims to examine the professional Autism Champions’ perceptions of (1) the knowledge gained through their local network and (2) the enablers and potential challenges of disseminating and applying the acquired knowledge. Seven health and social sector professionals participated in semi-structured interviews with thematic analysis identifying the themes ‘Learning from People’, ‘Makes you think of things in a different light’ and ‘There’s so much going on . . . ’. Results indicated that knowledge of autism gained from networking outside their own team was used and valued more than the professional presentations. It included signposting, sharing resources, using contacts to answer questions, and informal learning from autistic people. These results have implications for developing learning for Tier 2 and above staff. In addition, they could inform the development of future Autism Champion Networks to expand professionals’ knowledge of autism to reduce health and social care inequalities.Lay abstractThe Autism Act 10 Years On found few autistic adults thought health and social care professionals had a good understanding of autism. Autism training has been made law in the United Kingdom for health and social care staff to tackle health inequality. The county wide Autism Champion Network evaluated here is an equal partnership of interested staff across sectors (Autism Champions) and autistic experts by virtue of lived experience (Autism Advisory Panel). With knowledge flowing both ways, the Autism Champions take learning back to teams to support continuous development of services to meet autistic need. Seven health and social sector professionals from the Network participated in semi-structured interviews on sharing knowledge of autism gained with their teams. All participants provide care and support for autistic people, some working in specialist positions. Results showed that developing new relationships with people outside their own team to signpost to, answer questions and share resources, and informal learning from autistic people, was more valued and used in practice than information gained from presentations. These results have implications in developing learning for those who need above a basic knowledge of autism and may be useful for others considering setting up an Autism Champion Network.
      Citation: Autism
      PubDate: 2023-05-03T04:51:34Z
      DOI: 10.1177/13623613231167902
       
  • Effects of physical activity and exercise-based interventions in young
           adults with autism spectrum disorder: A systematic review

    • Free pre-print version: Loading...

      Authors: Vaishnavi Shahane, Amanda Kilyk, Sudha M Srinivasan
      Abstract: Autism, Ahead of Print.
      Young adults with autism spectrum disorder are an underserved population. Evidence-based guidelines for physical activity programs to address the lifelong needs of this population are presently unavailable. Our systematic review critically appraises the research to date on the effects of physical activity/exercise-based interventions on physical fitness, motor skills, core autism symptoms, and functional participation in young adults with autism spectrum disorder between 19 and 30 years. We reviewed 22 experimental and quasi-experimental studies that assessed the effects of physical activity/exercise-based interventions in 763 young adults with autism spectrum disorder. Evidence is strongest for improvements of medium-to-large size in physical fitness followed by medium-to-large improvements in motor outcomes, medium-to-large improvements in psychological function, and small-to-large improvements in quality of life. Aerobic, resistance, and movement skill/sport-specific training can improve cardiovascular function and muscular strength/endurance in young adults. Movement/sport training can help improve fundamental motor skills. Finally, holistic interventions combining elements of physical activity, diet, and lifestyle modifications are effective in improving outcomes related to body composition and quality of life in young adults. There is presently insufficient evidence for improvements in physical activity engagement or core autism symptoms following exercise interventions. We provide recommendations for assessment and intervention for clinicians working with young adults with autism spectrum disorder.Lay abstractYoung adults with autism spectrum disorder over 18 years of age are an underserved population, and there is presently limited evidence examining the effects of physical activity programs in this population. Our review synthesizes the evidence to date from studies that have assessed the effects of physical activity/exercise programs in young adults with autism spectrum disorder between 19 and 30 years. We reviewed 22 studies that included a total of 763 young adults with autism spectrum disorder. There is the strongest evidence for improvements in physical fitness, followed by motor skills, psychological function, and quality of life following physical activity interventions in young adults with autism spectrum disorder. Specifically, aerobic and resistance training as well as programs focused on movement skill and sport-specific training lead to improved physical fitness and movement performance. Holistic interventions focusing on physical activity, dietary changes, and lifestyle modifications lead to improvements in body composition and quality of life of young adults with autism spectrum disorder. There is presently limited evidence to support the use of exercise/activity programs to improve physical activity levels and core autism symptoms in young adults with autism spectrum disorder. Based on our review results, we also provide practical recommendations for clinicians working with young adults with autism spectrum disorder.
      Citation: Autism
      PubDate: 2023-05-02T05:24:05Z
      DOI: 10.1177/13623613231169058
       
  • Stigma and knowledge about autism in Brazil: A psychometric and
           intervention study

    • Free pre-print version: Loading...

      Authors: Ana Gabriela Rocha Araujo, Mônia Aparecida da Silva, Paulo Felipe Ribeiro Bandeira, Kristen Gillespie-Lynch, Regina Basso Zanon
      Abstract: Autism, Ahead of Print.
      Researchers from Brazil reached out to a researcher in the United States to co-develop and evaluate the psychometric properties of a Brazilian version of an autism stigma (social distance) scale and a Participatory Autism Knowledge-Measure (Study 1) and to assess the impact of an online training on autism stigma and knowledge in a Brazilian sample (Study 2). In a psychometric study, 532 Brazilians completed the stigma (EARPA) while 510 completed the knowledge scale (ECAT). In Study 2, 79 Brazilians (mostly white, female university students) participated in a quasi-experimental training evaluation. Exploratory graph analysis revealed one cluster on the EARPA and four clusters on the ECAT (intervention, diagnosis and etiology; autism in adulthood; repetitive behaviors and restricted interests; and socio-communicative development). The training evaluation revealed improvements across most EARPA and ECAT items, as well as changes in all centrality indicators assessed through the network analysis, suggesting that autism stigma and knowledge improved with training. Both scales are promising instruments and may be useful in future Brazilian and cross-cultural studies. The training could be used more widely to improve autism understanding in Brazil. Further cultural adaptations will likely be needed to make the training well-suited to the myriad cultural contexts present within Brazil.Lay abstractTo promote the full inclusion of autistic people, we must change the knowledge and attitudes of non-autistic individuals. Unfortunately, access to autism information and support remains limited in Brazil, and stigma is also common. Brazilian researchers reached out to a researcher in the United States to co-develop Brazilian surveys to measure autism stigma and knowledge. Together, they made Brazilian versions of stigma and knowledge surveys which autistic people in the United States had helped make. They also adapted an online autism training used in other countries with help from three Brazilian autistic people and the mother of an autistic child. They used the new measures to see if the autism training improved autism stigma and knowledge among Brazilians. The surveys, called EARPA and ECAT in Brazil, were translated into Portuguese in a previous study. In the first study in this article, 532 Brazilians completed the stigma measure and 510 completed the knowledge measure. The researchers used exploratory graph analysis, which uses the connections between items in a survey to understand which items belong together. Seventy-nine Brazilians participated in the training. They were mostly white, female university students. The EGA showed that the stigma survey measured one big idea while the knowledge survey measured four ideas: diagnosis/cause; socio-communicative development; stimming and special interests; and autism in adulthood. Both scales are promising and may be helpful in future Brazilian and cross-cultural studies about autism. Participants reported more knowledge and less stigma after the autism training, which has been found in other countries too.
      Citation: Autism
      PubDate: 2023-05-02T05:22:05Z
      DOI: 10.1177/13623613231168917
       
  • Self-reported autistic traits and psychosocial outcomes among university
           students in Malaysia

    • Free pre-print version: Loading...

      Authors: Hui Min Low, Mohd Syazwan Zainal, Jee Ching Pang, Yammy Ang, Marieke de Vries
      Abstract: Autism, Ahead of Print.
      An autism spectrum condition is considered a lifelong condition. Affected individuals typically experience poorer psychosocial outcomes compared to non-autistic individuals. However, in Southeast Asian countries such as Malaysia, research about autism spectrum conditions beyond the early childhood context is scarce, and therefore, the prevalence and psychosocial outcomes of young adults with autism spectrum conditions remain largely unknown. This study aims to explore self-reported autistic traits among university students in Malaysia, and their relation to emotion regulation, stress, self-efficacy and quality of life. Data from 2732 students revealed that 0.3% of the students reported having an autism spectrum condition diagnosis, while 2.5% reported that they suspected having an autism spectrum condition, but did not obtain a formal diagnosis. This indicates that an estimated 2.8% of students might have a diagnosed or suspected autism spectrum condition. These two categories of students were found to have poorer self-efficacy, higher perceived stress and poorer quality of life, as compared to their peers. However, these students were not significantly different from their peers in emotion regulation. Overall, the findings pointed to negative psychosocial outcomes associated with autism spectrum condition and culture-specific associations between autistic traits and psychosocial outcomes.Lay abstractMost research on autism spectrum conditions is done on young children and not as much on young adults with autism spectrum conditions. Because of this, not much is known about how common autism spectrum conditions are in young adults and how they affect their mental and social health, especially in Southeast Asia. Based on self-reports, 2.8% of the 2732 university students we looked at in Malaysia might have been diagnosed or thought to have an autism spectrum condition. Students who said they had or thought they had autism spectrum conditions had lower self-efficacy, more stress and a lower quality of life than students who said they did not have autism spectrum conditions. The results showed that university students with autism spectrum condition are more likely to have bad psychological and social outcomes than their peers without autism spectrum condition. Also, the link between autistic traits and psychosocial outcomes could depend on the culture.
      Citation: Autism
      PubDate: 2023-05-02T05:20:40Z
      DOI: 10.1177/13623613231167501
       
  • Respite and connection: Autistic adults’ reflections upon nature and
           well-being during the Covid-19 pandemic

    • Free pre-print version: Loading...

      Authors: Samantha Friedman, Roan Noble, Stephanie Archer, Jenny Gibson, Claire Hughes
      Abstract: Autism, Ahead of Print.
      The Covid-19 pandemic and associated lockdowns provided opportunities to engage and reconnect with nature, with many people noting associated benefits to well-being. Research from the pandemic period has largely focused on the way neurotypical or general populations experienced nature; less is known about how autistic people used nature to support well-being during this time. In this qualitative survey study of 127 autistic adults in the United Kingdom, we used reflexive thematic analysis of text box responses to develop two themes: respite in nature and connecting amid widespread disconnection. For some autistic adults during the pandemic, nature provided physical distance from others or from crowded homes, enabling them to use nature to experience relief from stress. In addition, some participants felt more psychologically connected to nature itself during the pandemic, while for others, nature served as a way of connecting with others during a potentially isolating time. These findings have implications for autistic people and their families and carers who may want to seek out nature-based activities to support well-being in the wake of the pandemic.Lay abstractThe Covid-19 pandemic and associated lockdowns provided opportunities to spend time in nature, with many people reporting that this benefitted their well-being. However, existing research from the pandemic period has focused on the way general populations experienced nature; less is known about how autistic people used nature to support their well-being during the pandemic. We created a survey that invited autistic adults living in the United Kingdom to reply to text box questions. A total of 127 people responded to our survey; we analysed their responses using a method called reflexive thematic analysis and developed themes based on patterns among all the responses. We developed two themes: respite in nature and connecting amid widespread disconnection. For some autistic adults during the pandemic, nature provided physical distance from others or from crowded homes, which helped them reduce their stress. In addition, some participants felt more psychologically connected to nature itself during the pandemic, while for others, nature served as a way of connecting with others during a potentially isolating time. These findings are important for autistic people and their families and carers who may want to seek out nature-based activities to support well-being in the wake of the pandemic.
      Citation: Autism
      PubDate: 2023-04-28T05:21:19Z
      DOI: 10.1177/13623613231166462
       
  • Visual abilities and exploration behaviors as predictors of intelligence
           in autistic children from preschool to school age

    • Free pre-print version: Loading...

      Authors: Dominique Girard, Valérie Courchesne, Catherine Cimon-Paquet, Claudine Jacques, Isabelle Soulières
      Abstract: Autism, Ahead of Print.
      The current prospective cohort study investigated whether early perceptual abilities, measured at preschool age, could predict later intellectual abilities at school age in a group of 41 autistic (9 girls, 32 boys) and 57 neurotypical children (29 girls, 28 boys). More than 80% of the autistic children were considered minimally verbal. Participants were assessed at three time points between the age of 2 and 8 years using the Wechsler Preschool and Primary Scales of Intelligence–Fourth Edition as a measure of full-scale IQ and the Raven’s Colored Progressive Matrices as a measure of fluid reasoning abilities (Gf). The performance on two perceptual tests (Visual Search and Children Embedded Figures Test) and the frequency of early non-verbal behaviors served as predictors of later intellectual abilities. Early performance on perceptual tests measured at preschool age was positively related to later full-scale IQ in both autistic and neurotypical children. Furthermore, both early non-verbal behaviors and performance on perceptual tests measured at preschool age were associated with later Gf in the autistic group. In contrast, only the performance on Children Embedded Figures Test was associated with later Gf in the neurotypical group. Early perceptual abilities\and non-verbal behaviors may be indicators of general intelligence and Gf abilities.Lay AbstractAt the time of diagnosis, parents of autistic children frequently wonder what the future holds for their children in terms of intellectual development. It remains however difficult to answer this question at such a young age. Indeed, while early precursors of intelligence are well known for children following a typical development, these precursors remain to be identified for autistic children. Some theoretical models of intelligence suggest that perceptual abilities or behaviors, as seen early in autistic cognitive development, could be early indicators of intelligence. However, research examining the relation between early perceptual predictors and autistic intelligence over time is needed. This article is the first to consider a variety of early perceptual abilities and behaviors as precursors/predictors of intelligence at school age in autistic children. We showed that better performance in perceptual tasks at preschool age predicted better intellectual abilities measured later in autistic children. Importantly, our sample of autistic children represented the whole spectrum, including children with few to no spoken words, who are an important proportion of autistic preschoolers. While early perceptual abilities and behaviors may not substitute for a formal intellectual assessment, our results support that these indices may help estimate later intellectual level in autistic children. Perceptual abilities have the advantage to be easy to observe at preschool age and seem to fit the cognitive style of autistic children. Assessment methods could probably gain from including and focusing more on the perceptual strengths of autistic children.
      Citation: Autism
      PubDate: 2023-04-28T05:20:02Z
      DOI: 10.1177/13623613231166189
       
  • Parent reported barriers and facilitators to support services for autistic
           children in Aotearoa New Zealand

    • Free pre-print version: Loading...

      Authors: Carla Wallace-Watkin, Jeff Sigafoos, Lisa Woods, Hannah Waddington
      Abstract: Autism, Ahead of Print.
      We surveyed New Zealand parents of autistic children to identify their perceived barriers and facilitators to accessing support services, including the influence of a family’s level of financial resourcing. A total of 173 completed surveys were analysed. Service pathway factors were the greatest barrier experienced by participants, whereas facilitators related to providers tended to be most helpful. Lower family income was associated with a higher number of reported barriers. Both lower family income and having a child who identified their gender as non-binary were predictive of rating the extent of barriers higher. Parents of younger or of non-speaking autistic children on average reported a greater number of facilitators. Implications of these results for support service delivery and potential areas for future research are discussed.Lay abstractParents might have problems in getting support services for their autistic child due to certain barriers. However, there might also be things that can ease or facilitate parents’ access to support services. In this study, New Zealand parents were asked about their experiences in getting support services for their autistic child. We also looked at differences in reported barriers and facilitators based on several demographic factors with a focus on family level of financial resourcing. A total of 173 parents completed a survey. The results suggested that parents experienced several barriers, particularly related to service pathways. Facilitators were also experienced, predominantly related to providers. Financial resourcing predicted the number of parent-reported barriers. Both lower level of family financial resourcing and having a non-binary child predicted parents’ rating of the extent of barriers. Child age and level of speech were predictors for reports of experiencing a higher number of facilitators, with parents of younger children or of non-speaking autistic children reporting a greater number of facilitators. We discuss how these results may be useful to support service delivery and identify areas for future research.
      Citation: Autism
      PubDate: 2023-04-27T12:35:12Z
      DOI: 10.1177/13623613231168240
       
  • Working memory of school-aged children on the autism spectrum: Predictors
           for longitudinal growth

    • Free pre-print version: Loading...

      Authors: Sohyun An Kim, Connie Kasari
      Abstract: Autism, Ahead of Print.
      Working memory is an important component of executive functioning, an area of difficulty for many autistic children. However, executive functioning and working memory are highly malleable throughout childhood, and various student-level and environmental factors play important roles in their development. This study used the Early Childhood Longitudinal Studies–Kindergarten Class of 2011. Conditional latent growth models were constructed to identify possible predictors for autistic children’s working memory performance upon entering kindergarten and their relative growth throughout their elementary school years. Study results indicate that socioeconomic status and students’ approaches to learning were positively associated with autistic children’s working memory performance upon school entry. Students’ approaches to learning positively predicted their rate of growth during the first 3 years and negatively predicted their rate of growth during the last 3 years of elementary school. Student–teacher relationship was positively associated with the rate of growth during the last 3 years of their elementary school years. Furthermore, autistic students who started at a lower standing in working memory upon school entry were more likely to receive special education services during their elementary school years. Practical and policy implications as well as future directions are discussed.Lay abstractWorking memory is an important skill for school success, and it involves holding information in our memory while using it to solve complex problems at the same time. Autistic children often have difficulty with working memory. Because working memory development can be easily influenced by many factors from a young age, it is important to find factors that help with autistic children’s development. This study tested the factors that are related to autistic children’s working memory when they start kindergarten and the factors that can help with rapid improvement throughout their elementary school. We used a nationally representative data set that followed the same group of children from kindergarten to fifth grade. We found that autistic students from backgrounds with more resources and students with advanced learning approaches such as being organized, being excited to learn, and paying careful attention to their work, started school with strong working memory. Autistic students with advanced learning approaches continued to make rapid improvements during the first 3 years, and then their growth slowed down during the last 3 years. Autistic students who had a good relationship with their teachers made rapid improvements during the last 3 years of their elementary school. In addition, autistic children who struggled with working memory upon school entry were more likely to receive special education services at school. These findings suggest that we need effective ways to teach young autistic children important learning-related behaviors from a very young age through the school system, and teachers must prioritize building positive relationships with their students.
      Citation: Autism
      PubDate: 2023-04-22T06:13:34Z
      DOI: 10.1177/13623613231165599
       
  • Pediatricians’ role in healthcare for Latino autistic children: Shared
           decision-making versus “You’ve got to do everything on your own”

    • Free pre-print version: Loading...

      Authors: Amber M Angell, Olivia J Lindly, Daniella Floríndez, Lucía I Floríndez, Leah I Stein Duker, Katharine E Zuckerman, Larry Yin, Olga Solomon
      Abstract: Autism, Ahead of Print.
      Despite documented healthcare disparities among Latino autistic children, little is known about how their families experience the autism “diagnostic odyssey.” Pediatricians have a critical role in the “diagnostic odyssey,” but when it becomes arduous, parents may also use complementary health approaches, particularly when conventional care does not adequately address their concerns. Shared decision-making is important in healthcare for autistic children, especially when parents also choose complementary health approaches; but little is known about shared decision-making among Latino parents of autistic children. We conducted a 12-month ethnography with 12 bicultural/bilingual Latino families of autistic children to understand their healthcare experiences (conventional and complementary health approaches) for their children, focusing on shared decision-making. Thematic analysis revealed: (1) most pediatricians were involved early in the “diagnostic odyssey” but were largely uninvolved thereafter; (2) conventional healthcare was satisfactory to the parents for physical health, but not developmental issues; and (3) parents who used complementary health approaches were more frustrated about a lack of autism information from pediatricians than those who did not. Finally, (4) we describe two exemplars of successful shared decision-making between Latino parents and pediatricians. Increasing pediatricians’ autism knowledge and ability to discuss complementary health approaches may facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.Lay AbstractLatino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use if they worry that the pediatrician will disapprove or judge them. This fear, along with pediatricians’ lack of autism knowledge, creates barriers to “shared decision-making” between parents and pediatricians. Shared decision-making is a process where families and healthcare providers collaborate and exchange information in order to come to an agreement about treatment options. In our qualitative study with 12 bilingual Latino families of autistic children, we interviewed and observed families to learn about their experiences with both conventional healthcare (their pediatrician) and complementary health approaches. Our study results describe the parents’ different pathways to an autism assessment, a process that is sometimes called the “diagnostic odyssey.” The parents reported that conventional healthcare met their needs for their child’s physical health but not for their child’s developmental challenges. The parents who used complementary health approaches for their autistic children were more frustrated about a lack of autism information from pediatricians than those who did not use complementary health approaches. Finally, we describe two examples of successful shared decision-making between parents and pediatricians. We conclude that pediatricians who are able to talk about complementary health approaches with Latino families may help to facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.
      Citation: Autism
      PubDate: 2023-04-18T06:51:21Z
      DOI: 10.1177/13623613231163056
       
  • Examining adaptations necessary to support the implementation of a
           parent-mediated intervention for children with autism spectrum disorder
           and moderate feeding problems

    • Free pre-print version: Loading...

      Authors: Katherine Pickard, T Lindsey Burrell, Susan Brasher, Derianne Buckley, Scott Gillespie, William Sharp, Lawrence Scahill
      Abstract: Autism, Ahead of Print.
      Moderate feeding problems affect many children with autism spectrum disorder and often co-occur with disruptive mealtime behaviors. Although parent-mediated interventions have shown promise to support feeding problems, research has primarily occurred within randomized controlled trials when delivered by highly trained clinicians in specialty clinics. Thus, the alignment of these approaches within community settings is unclear. To address this limitation, this study explored adaptations to a parent-mediated intervention, Managing Eating Aversions and Limited Variety (i.e. MEAL Plan), to enhance its adoption, implementation, and sustainment within community settings, including factors that may support or hinder its translation. Participants were 14 multidisciplinary providers who attended one of the three workgroups that included semi-structured focus groups regarding the fit of MEAL Plan in their practice setting. Thematic analysis was used to determine emergent themes, which fell into the domains of content, contextual considerations, and training needs. Specific themes included the appropriateness MEAL Plan for autistic and non-autistic children, adaptations to MEAL Plan delivery, billing considerations, agency-level support, and the format of ongoing training and consultation. By proactively responding to these factors, it may be possible to enhance the implementation and sustainability of parent-mediated interventions, including MEAL Plan, within community practices that support autistic children.Lay abstractModerate feeding problems and disruptive mealtime behaviors are common in children with autism spectrum disorder. Although parent-mediated interventions are able to support feeding problems in autistic children, most research has occurred within specialty clinics when delivered by highly trained clinicians. Thus, the fit of these interventions within community settings is not clear. To address this limitation, this study explored adaptations to a parent-mediated intervention, Managing Eating Aversions and Limited Variety (i.e. MEAL Plan), to improve its fit and use within community settings. Participants were 14 multidisciplinary providers who attended one of the three intensive workgroups that included focus groups about the fit of MEAL Plan in their practice setting. Qualitative analysis was used to determine the main themes that came up within the focus groups. Specific themes included the appropriateness MEAL Plan for autistic and non-autistic children, how providers might adapt their delivery of MEAL Plan, billing and insurance considerations, administrator support for MEAL Plan, and the content and format of ongoing training and consultation. By proactively considering and responding to these factors, it may be possible to enhance MEAL Plan so that it is better able to be delivered and sustained within community practices that support autistic children.
      Citation: Autism
      PubDate: 2023-04-17T05:20:08Z
      DOI: 10.1177/13623613231166181
       
  • Assessing suicidal thoughts and behaviors and nonsuicidal self-injury in
           autistic and non-autistic early adolescents using the Columbia Suicide
           Severity Rating Scale

    • Free pre-print version: Loading...

      Authors: Jessica M Schwartzman, Rachael A Muscatello, Blythe A Corbett
      Abstract: Autism, Ahead of Print.
      Suicidal thoughts and behaviors and nonsuicidal self-injury are more common in autistic adolescents than non-autistic adolescents, per parent- and self-report. Clinician-rated measures of suicide risk (e.g. Columbia Suicide Severity Rating Scale) have not been investigated with autistic youth despite high parent–child rating discrepancies. In the present study, the Columbia Suicide Severity Rating Scale was employed to assess suicidal thoughts and behaviors and nonsuicidal self-injury in 239 early adolescents (10:0–13:9 years old) without intellectual disability, of whom 138 youth were autistic. Analyses tested diagnostic- and sex-based differences in suicidal thoughts and behaviors and nonsuicidal self-injury, and youth consistency in reporting across self- and clinician-rated measures. A greater proportion of autistic youth reported lifetime suicidal ideation (33 of 138, 23.9%) and nonsuicidal self-injury (12 of 138, 8.7%) than non-autistic youth (7 of 101, 6.9% suicidal ideation; 2 of 101, 2.0% nonsuicidal self-injury); however, there were no sex-based differences. Non-autistic youth were consistent in reporting suicidal thoughts across measures, but nearly one in five autistic youth disclosed suicidal thoughts on a self-report measure, but not on the clinician-rated Columbia Suicide Severity Rating Scale. Findings suggest that autism diagnostic status, but not sex, confers significant risk for suicidal thoughts and behaviors and nonsuicidal self-injury in early adolescents and that the Columbia Suicide Severity Rating Scale may be a useful measure of suicide risk for some autistic youth, but it may not detect all autistic youth experiencing suicidal thoughts.Lay abstractAutistic adolescents are more likely to experience suicidal thoughts and behaviors and nonsuicidal self-injury than non-autistic adolescents, per caregiver- and self-report on single-item questionnaires. Comprehensive, clinician-rated measures of suicide risk have not been used to measure suicidal thoughts and behaviors and nonsuicidal self-injury in autistic youth despite greater parent–child rating discrepancies among autistic youth than their non-autistic peers. The Columbia Suicide Severity Rating Scale is a widely used, clinician-rated measure of suicide risk that has not been tested with autistic youth. In this study, the Columbia Suicide Severity Rating Scale was employed to assess suicidal thoughts and behaviors and nonsuicidal self-injury in a community sample of 239 early adolescents (10:0–13:9 years old), of whom 138 youth were autistic and 101 were not autistic. Multiple analyses examined diagnostic (autistic vs non-autistic) and sex-based (male vs female) differences in suicidal thoughts and behaviors and nonsuicidal self-injury, as well as youth consistency in reporting across self- and clinician-rated measures. Findings show that a greater proportion of autistic youth reported lifetime suicidal thoughts and nonsuicidal self-injury than non-autistic youth; however, there were no sex-based differences. The majority of non-autistic youth were consistent in reporting suicidal thoughts on self- and clinician-rated measures; however, nearly one in five autistic youth disclosed suicidal thoughts on a self-report measure but not to a psychiatrist on the Columbia Suicide Severity Rating Scale. Findings suggest that autism diagnostic status, but not sex, confers significant risk for suicidal thoughts and behaviors and nonsuicidal self-injury in early adolescents and that the Columbia Suicide Severity Rating Scale may be a useful measure of suicide risk for some autistic youth, but it may not detect all autistic youth experiencing suicidal thoughts.
      Citation: Autism
      PubDate: 2023-04-13T05:20:29Z
      DOI: 10.1177/13623613231162154
       
  • Autism community priorities in diverse low-resource settings: A
           country-wide scoping exercise in India

    • Free pre-print version: Loading...

      Authors: Ipsita Dey, Sreerupa Chakrabarty, Rajanya Nandi, Rakshita Shekhar, Sakhi Singhi, Shoba Nayar, Jai Ranjan Ram, Shaneel Mukerji, Bhismadev Chakrabarti
      Abstract: Autism, Ahead of Print.
      While studies to map the priorities of the autistic community have been undertaken in some high-income countries, there has been little or no such systematic assessment in the global south. India alone is home to an estimated>5 million autistic individuals. To address this gap in the literature, this study conducted a survey of the Indian autism community on their priorities for three areas: skills training, intervention and research. Individuals with a clinical diagnosis of autism spectrum disorders and parents/guardians of autistic individuals were invited to take part in the study. Data from 280 respondents were collected online and followed up with interviews on a subset (n = 40) chosen through stratified random selection. Results highlighted a unanimous prioritisation for self-help skills as the most important area in skills training, as it was considered the foundation for acquiring all other skills. Speech and language therapy was identified as the most important intervention for autistic individuals. Within research, identifying the most effective ways for the community to support autistic people was given the topmost priority. Researchers, clinicians and policymakers may use these insights to develop services and shape future research that is more in accord with the community’s needs.Lay abstractIt is vital to directly engage with the autism community in order to develop better services and drive the research agenda. While some studies in high-income countries have mapped the priorities of the autism community, there is a severe dearth of such efforts in the global south. Five million autistic individuals are estimated to live in India alone, and there has been little effort to map their priorities. Moreover, studies in high-income countries focused largely on research priorities, and not so much on skills training and interventions. Keeping these needs in mind, we conducted an online survey followed by an in-depth conversation with parents of autistic children and autistic adults drawn from across India. We found that the respondents reported self-help skills to be the most important for training, as they considered it fundamental for every other aspect of life. Speech and language therapy was considered to be the highest intervention priority for this group, highlighting the importance of social communication. Mental health counselling was also considered to be a high priority, but several parents identified it as being more relevant for themselves rather than for their children. Within research, the topmost priority was to understand ways in which the community can better support autistic people. We hope that these findings will help researchers, policymakers and service providers to be able to make well-informed decisions, develop relevant services and shape future research.
      Citation: Autism
      PubDate: 2023-03-31T07:42:08Z
      DOI: 10.1177/13623613231154067
       
  • Social attention patterns of autistic and non-autistic adults when viewing
           real versus reel people

    • Free pre-print version: Loading...

      Authors: Beatriz López, Nicola Jean Gregory, Megan Freeth
      Abstract: Autism, Ahead of Print.
      Research consistently shows that autistic adults do not attend to faces as much as non-autistic adults. However, this conclusion is largely based on studies using pre-recorded videos or photographs as stimuli. In studies using real social scenarios, the evidence is not as clear. To explore the extent to which differences in findings relate to differences in the methodologies used across studies, we directly compared social attention of 32 autistic and 33 non-autistic adults when watching exactly the same video. However, half of the participants in each group were told simply to watch the video (Video condition), and the other half were led to believe they were watching a live webcam feed (‘Live’ condition). The results yielded no significant group differences in the ‘Live’ condition. However, significant group differences were found in the ‘Video’ condition. In this condition, non-autistic participants, but not autistic participants, showed a marked social bias towards faces. The findings highlight the importance of studying social attention combining different methods. Specifically, we argue that studies using pre-recorded footage and studies using real people tap into separate components contributing to social attention. One that is an innate, automatic component and one that is modulated by social norms.Lay AbstractEarly research shows that autistic adults do not attend to faces as much as non-autistic adults. However, some recent studies where autistic people are placed in scenarios with real people reveal that they attend to faces as much as non-autistic people. This study compares attention to faces in two situations. In one, autistic and non-autistic adults watched a pre-recorded video. In the other, they watched what they thought were two people in a room in the same building, via a life webcam, when in fact exactly the same video in two situations. We report the results of 32 autistic adults and 33 non-autistic adults. The results showed that autistic adults do not differ in any way from non-autistic adults when they watched what they believed was people interacting in real time. However, when they thought they were watching a video, non-autistic participants showed higher levels of attention to faces than non-autistic participants. We conclude that attention to social stimuli is the result of a combination of two processes. One innate, which seems to be different in autism, and one that is influenced by social norms, which works in the same way in autistic adults without learning disabilities. The results suggest that social attention is not as different in autism as first thought. Specifically, the study contributes to dispel long-standing deficit models regarding social attention in autism as it points to subtle differences in the use of social norms rather than impairments.
      Citation: Autism
      PubDate: 2023-03-30T12:23:38Z
      DOI: 10.1177/13623613231162156
       
  • Prevalence and nature of prior developmental and medical concerns in
           toddlers who screen positive for autism in primary care

    • Free pre-print version: Loading...

      Authors: Darby Herkert, Connor Sullivan, YiQin Zhu, Geraldine Dawson
      Abstract: Autism, Ahead of Print.
      The American Academy of Pediatrics recommends that children be screened for autism at 18 and 24 months. It is unknown whether a positive screen usually represents the first developmental concern or is typically preceded by other developmental and/or medical concerns. This study evaluated the proportions of toddlers (M = 18.69 months) who screened positive for autism for whom caregivers or providers had prior concerns, the nature and timing of prior concerns, and their relationship with family characteristics. The electronic health records of 242 children who screened positive using the Modified Checklist for Autism in Toddlers–Revised with Follow-up during routine well-child visits were reviewed. Among toddlers who screened positive for autism, the majority (79.34%) had a documented prior motor, language, and/or autism concern. The presence of specific concerns was associated with earlier timing and higher Modified Checklist for Autism in Toddlers–Revised with Follow-up scores. Prior medical concerns were common, such as sleep (23.14%) and gastrointestinal (66.12%) problems. A positive autism screen often occurs in the context of pre-existing concerns. Thus, screening can provide providers with an opportunity to contextualize feedback about autism in the context of prior developmental and medical concerns.Lay abstractThe American Academy of Pediatrics recommends that all children be screened for autism at their 18- and 24-month well-child visit. For children who screen positive for autism, it is unknown whether this usually represents the first time a developmental concern has been raised or if other developmental concerns typically precede a positive autism screen. Such knowledge could help guide providers in how to appropriately convey feedback regarding autism screening. This study found that, for close to 80% of children with a positive autism screen, caregivers or providers had a prior autism, language, motor, or other developmental concern documented in the electronic health record. Many also had other prior concerns frequently linked to autism, such as sleep and gastrointestinal problems, and received physical or speech therapy. On average, prior to screening children who received a positive Modified-Checklist for Autism in Toddlers had two documented concerns by at 1 year of age and three concerns by 2 years of age. These findings imply that screening for autism as a part of routine pediatric care likely takes place in the context of larger conversations regarding existing developmental concerns, allowing for a less stigmatizing discussion of autism. Framing the presence of prior concerns in the setting of a positive screen in this context may create a reaffirming space for existing caregiver concerns and a lessened emotional burden on caregivers.
      Citation: Autism
      PubDate: 2023-03-30T12:01:12Z
      DOI: 10.1177/13623613231162146
       
  • I-SOCIALISE: Results from a cluster randomised controlled trial
           investigating the social competence and isolation of children with autism
           taking part in LEGO® based therapy (‘Play Brick Therapy’) clubs in
           school environments

    • Free pre-print version: Loading...

      Authors: Barry Wright, Ellen Kingsley, Cindy Cooper, Katie Biggs, Matthew Bursnall, Han-I- Wang, Tim Chater, Elizabeth Coates, M Dawn Teare, Kirsty McKendrick, Gina Gomez de la Cuesta, Amy Barr, Kiera Solaiman, Anna Packham, David Marshall, Danielle Varley, Roshanak Nekooi, Steve Parrott, Shehzad Ali, Simon Gilbody, Ann Le Couteur
      Abstract: Autism, Ahead of Print.
      Social learning through friendships is important in child development. Autistic children often initiate and engage in social interactions differently than neurotypical peers. LEGO® based therapy is a group intervention which facilitates social interactions with peers using collaborative LEGO® play. A 1:1 cluster randomised controlled trial with autistic children aged 7–15 comparing 12 weeks’ LEGO® based therapy and usual support to usual support alone in 98 mainstream schools (2017–2019) was carried out. The primary outcome was social skills (Social Skills Improvement System) completed by unblinded teachers (not intervention deliverers) at 20 weeks. Analysis used intention-to-treat. Fifty intervention schools (127 participants) and 48 control schools (123 participants) were allocated. Primary analysis included 45 intervention schools (116 participants) and 42 control schools (101 participants). The between-arms difference was 3.74 (p = 0.06, 95% confidence interval: −0.16, 7.63) and 1.68 (p = 0.43, 95% confidence interval: −2.51, 5.87) at 20 and 52 weeks (0.18 and 0.08 standardised effect sizes). Twenty-week outcomes for those receiving per protocol intervention were 4.23 (95% confidence interval 0.27, 8.19) with a standardised effect size of 0.21. Sensitivity estimates were between 3.10 and 4.37 (0.15–0.21 standardised effect sizes). Three unrelated serious adverse events were reported. LEGO® based therapy has a small positive non-significant benefit for social skills at 20 weeks but not 52 weeks.Lay abstractAutism is characterised by keen interests and differences in social interactions and communication. Activities that help autistic children and young people with social skills are commonly used in UK schools. LEGO® based therapy is a new activity that provides interesting and fun social opportunities for children and young people and involves building LEGO® models together. This study looked at LEGO® based therapy for the social skills of autistic children and young people in schools. It was a randomised controlled trial, meaning each school was randomly chosen (like flipping a coin) to either run LEGO® based therapy groups in school over 12 weeks and have usual support from school or other professionals, or only have usual support from school or other professionals. The effect of the LEGO® based therapy groups was measured by asking children and young people, their parents/guardians, and a teacher at school in both arms of the study to complete some questionnaires. The main objective was to see if the teacher’s questionnaire answers about the children and young people’s social skills changed between their first and second completions. The social skills of participants in the LEGO® based therapy groups were found to have improved in a small way when compared to usual support only. The study also found that LEGO® based therapy was not very costly for schools to run and parents/guardians and teachers said they thought it was good for their children and young people. We suggest further research into different potential benefits of LEGO® based therapy.
      Citation: Autism
      PubDate: 2023-03-30T04:49:12Z
      DOI: 10.1177/13623613231159699
       
  • Are lay abstracts published in Autism readable enough for the general
           public' A short report

    • Free pre-print version: Loading...

      Authors: Lan Yi, Xiaohu Yang
      Abstract: Autism, Ahead of Print.
      Lay abstracts are brief descriptions or summaries of research that are targeted at a general audience. They are held as an important means for the research community to provide greater transparency to the general public and to increase visibility of the pertinent research. This study aims to examine the extent to which lay abstracts published in the journal Autism are comprehensible to a lay audience in terms of readability measures. Results showed that lay abstracts published in Autism were more readable than their corresponding abstracts but were less readable than plain English texts (e.g. news reports). To our knowledge, this is probably the first comparative study on the readability of lay abstracts. Possible explanations for and implications of these findings were offered.Lay abstractResearch papers are sometimes hard to follow. Lay abstracts give a short account of research papers. However, it is unclear whether lay abstracts are readable to the lay people. This study examined the readability of 570 abstracts and lay abstracts published between 2020 and 2022 in the journal Autism. We found that that lay abstracts are easier to read than abstracts but are harder to read than news reports. The findings suggest that lay abstracts, on average, are hard to read for the lay people. We propose that the journal and its authors may invite reviewers from outside the research community to test whether a lay abstract is readable.
      Citation: Autism
      PubDate: 2023-03-25T09:50:44Z
      DOI: 10.1177/13623613231163083
       
  • Examining provider decisions around the delivery and adaptation of a
           parent-mediated intervention within an Early Intervention system

    • Free pre-print version: Loading...

      Authors: Katherine Pickard, Nicole Hendrix, Karen Guerra, Natalie Brane, Nailah Islam
      Abstract: Autism, Ahead of Print.
      There is growing research aimed at translating parent-mediated interventions into Part C Early Intervention systems to examine the effectiveness and reach of these models. Although research to date suggests that Early Intervention providers deliver parent-mediated intervention near fidelity, current fidelity reporting practices make delivery difficult to discern. Understanding how parent-mediated interventions are delivered and adapted in a more nuanced manner, including fine-grained intervention delivery and adaptation processes, is important and may increase our understanding of how well these models are aligned within Early Intervention systems. The current study examined the delivery of an evidence-based parent-mediated intervention, Project ImPACT, when delivered by Early Intervention providers and examined their intervention fidelity, the decisions they weighed when delivering Project ImPACT, and reported adaptations to Project ImPACT. Results from 24 providers demonstrated, on average, higher fidelity in response to consultative feedback but notable variability across providers. Preliminary qualitative data highlighted that many events arose within sessions that drove providers to augment their delivery of Project ImPACT. Results suggest the importance of carefully examining how and why providers deliver evidence-based interventions within Early Intervention systems, and the impact of these decisions on fidelity metrics and service outcomes.Lay abstractParent-mediated interventions are an evidence-based practice for autism in which providers support caregivers in learning and applying strategies that support their child’s development. Research has begun to study whether parent-mediated interventions can be effectively delivered in Part C Early Intervention systems. This research has been promising; however, it has been difficult to determine how Early Intervention providers deliver and adapt parent-mediated interventions to meet the needs of the families they serve. Examining how parent-mediated interventions are delivered and adapted may help us understand whether parent-mediated interventions are a good fit in these systems. The current study examined the delivery of an evidence-based parent-mediated intervention, Project ImPACT, when delivered by providers within an Early Intervention system. Results from 24 Early Intervention providers demonstrated that, on average, providers delivered Project ImPACT with higher quality during their time in training and consultation. However, there was also variability in how providers delivered Project ImPACT, with some delivering the program inconsistently, some increasing their quality throughout consultation, and others having consistently high-quality delivery. In addition, qualitative data demonstrated that a variety of events arose within Project ImPACT sessions that drove providers to adapt the program. Results suggest the importance of carefully examining how and why providers deliver evidence-based interventions within Early Intervention systems.
      Citation: Autism
      PubDate: 2023-03-23T07:54:09Z
      DOI: 10.1177/13623613231162149
       
  • Prevalence and severity of COVID-19 among children and adolescents with
           autism spectrum disorders in the Republic of Korea

    • Free pre-print version: Loading...

      Authors: Jieun Yun, Beomjun Kang, Jae-ryun Lee, Hyejin Lee, Jin Yong Lee
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder is considered a vulnerability for many diseases including coronavirus disease 2019. This study investigated trends in coronavirus disease 2019 among children and adolescents with and without autism spectrum disorder and to evaluate whether there are differences in the prevalence, severity, and case fatality rate. We used data from the National Health Insurance Service for all people ⩽19 years of age. Among 9,187,211 children and adolescents ⩽19 years of age, 402,499 (4.4%) were coronavirus disease 2019–positive. Of the total population, 63,054 (0.7%) were diagnosed with autism spectrum disorder, among whom 2557 (4.1%) were coronavirus disease 2019–positive. The coronavirus disease 2019 prevalence was lower among children and adolescents with autism spectrum disorder, with 4055 per 100,000 versus 4383 per 100,000 without autism spectrum disorder (p 
      Citation: Autism
      PubDate: 2023-03-20T06:41:41Z
      DOI: 10.1177/13623613231160631
       
  • Factors of relationship satisfaction for autistic and non-autistic
           partners in long-term relationships

    • Free pre-print version: Loading...

      Authors: Rui Ying Yew, Merrilyn Hooley, Mark A Stokes
      Abstract: Autism, Ahead of Print.
      Autistic individuals have reported lower satisfaction in their romantic relationships compared to non-autistic individuals. Previous research on the factors that contribute to relationship satisfaction within autism has focused on the characteristics of autistic participants as barriers to relationship satisfaction, while overlooking the role of their partners. This study investigated a range of factors and their association with long-term relationship satisfaction for 95 autistic individuals and 65 non-autistic individuals in current or previous long-term relationships with autistic individuals. Participants completed an online survey, including questionnaires measuring autistic traits, the Big Five personality traits, social loneliness, partner responsiveness, sexual satisfaction and relationship satisfaction. Partner responsiveness significantly predicted relationship satisfaction for both autistic and non-autistic partners. The findings suggest that to enhance relationship satisfaction, service providers working with couples involving an autistic individual would improve the relationship by focusing on assisting their clients to identify each other’s needs and how best to meet them.Lay abstractPrevious research has found that autistic people report lower satisfaction in their romantic relationships compared to non-autistic people. However, the majority of this research has focused on autistic traits as barriers to relationship satisfaction, while overlooking the role of their partners in these relationships. Our study explored a range of factors in both autistic people and non-autistic partners of autistic people and how they may be linked to long-term relationship satisfaction. These factors included social and communication skills, personality traits, social loneliness, partner responsiveness, and sexual satisfaction. We found that partner responsiveness was a strong predictor of relationship satisfaction for both autistic and non-autistic partners, suggesting that rather than focusing intervention solely on the autistic person, the role of their partner should also be considered. Service providers who work with couples involving an autistic person to enhance their relationship satisfaction could focus on assisting their clients to identify each other’s needs and how best to meet them.
      Citation: Autism
      PubDate: 2023-03-16T10:10:06Z
      DOI: 10.1177/13623613231160244
       
  • Factors influencing the mental health of autistic children and teenagers:
           Parents’ observations and experiences

    • Free pre-print version: Loading...

      Authors: Suzanne Mukherjee, Bryony Beresford
      Abstract: Autism, Ahead of Print.
      The high prevalence of mental health and behaviour problems among autistic children and adults is an issue of concern to the autism community. Many studies have been undertaken to identify the factors that protect against/or increase the risk of such difficulties. However, this research is dominated by quantitative observational studies. In this study, we sought to investigate the same issue using a qualitative research approach, positioning parents as experts and eliciting their theories as to what influenced their child’s mental health from diagnosis to the late teenage years. In-depth interviews were undertaken with 33 parents (30 mothers, 3 fathers) of 31 autistic teenagers (21 males, 10 females) aged between 15 and 19 years (median 17 years) purposively sampled from an existing cohort (QUEST). Parents believed a wide range of child-centred, developmental and socio-environmental factors had played a role in their child’s mental health, alongside life events involving loss and separation. A number of these factors have received little or no research attention to date (e.g. aspects of the school environment). The findings have important implications, highlighting factors that should be given priority in future research, as well as interventions needed to support the mental health of autistic teenagers.Lay abstractAutistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents’ expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers’ mental health from diagnosis in early childhood through to the present, and to explain the ‘theories’ they developed about what affected their child’s mental health – positively and negatively – and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child’s difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved.
      Citation: Autism
      PubDate: 2023-03-16T04:41:09Z
      DOI: 10.1177/13623613231158959
       
  • The earlier the better: An RCT of treatment timing effects for toddlers on
           the autism spectrum

    • Free pre-print version: Loading...

      Authors: Whitney Guthrie, Amy M Wetherby, Juliann Woods, Christopher Schatschneider, Renee D Holland, Lindee Morgan, Catherine E Lord
      Abstract: Autism, Ahead of Print.
      Robust evidence supports the efficacy of early autism intervention. Despite broad consensus that earlier intervention leads to better outcomes, evidence for this has been limited to correlational studies. This study examined timing effects of the Early Social Interaction (ESI) model, a parent-implemented intervention, using a complete crossover randomized controlled trial (RCT). Effects of Individual-ESI were compared when initiated at 18 or 27 months of age, and also contrasted with effects of the less intensive Group-ESI as an active control condition. Participants included 82 autistic toddlers who received 9 months of Individual-ESI and 9 months of Group-ESI, with the timing/order randomized. Blinded clinicians completed assessments at baseline (18 months of age), end of Condition 1 (27 months), and end of Condition 2 (36 months). Toddlers randomized to Individual-ESI at 18 months showed greater gains during treatment than those starting Individual-ESI at 27 months in receptive/expressive language, social communication, and daily living skills. This pattern was not observed for Group-ESI, demonstrating that timing effects were specific to Individual-ESI and ruling out maturation effects. This RCT demonstrated that earlier intensive, individualized intervention led to greater improvements, and suggests that even a narrow window of 18 versus 27 months may impact child outcomes.Lay abstractBehavioral interventions that incorporate naturalistic, developmental strategies have been shown to improve outcomes for young children who receive an autism spectrum disorder (ASD) diagnosis. Although there is broad consensus that children on the spectrum should begin supports as soon as possible, the empirical evidence for this is relatively limited and little is known about the optimal age to start autism-specific interventions. Our team conducted a randomized controlled trial (RCT) to test the effects of starting intervention at different ages, using the Early Social Interaction (ESI) model, a parent-implemented intervention for toddlers on the spectrum. Participants included 82 autistic toddlers and their caregiver(s) who received 9 months of Individual-ESI and 9 months of Group-ESI, with the timing/order of these two treatment conditions randomized. Thus, families received the more intensive and individualized Individual-ESI at either 18 or 27 months of age. Results revealed that children who received Individual-ESI earlier showed greater treatment gains than those who received this intervention later. Gains were demonstrated in several areas, which included the use and understanding of language, social use of communication skills, and self-help skills. Importantly, these findings were specific to the intensive and individualized parent coaching model compared to group-based treatment, allowing us to rule out the possibility that these timing effects were due to children getting older rather than the treatment itself. Our results suggest that even a narrow window of 18 versus 27 months may have an impact on outcomes and underscore the importance of screening and evaluation as young as possible.
      Citation: Autism
      PubDate: 2023-03-16T04:38:59Z
      DOI: 10.1177/13623613231159153
       
  • Direct and indirect costs for families of children with autism spectrum
           disorder in China

    • Free pre-print version: Loading...

      Authors: Yanan Zhao, Yanan Luo, Rong Zhang, Xiaoying Zheng
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder has gained international attention due to its prevalence and the extent to which it can affect families. As a disorder without quantifiable treatment effects, it is easily overlooked in the battle for resources. Estimating family economic burdens and the specific factors that may be associated with them could help in the identification of resources and the promotion of social justice. We examined the family costs from a national family survey with Children with autism spectrum disorder aged 2–6 years (N = 3236). A three-tiered model to quantify the costs was used. The families’ average annual direct cost per child was $24,869.0, including direct medical cost (inpatient, outpatient,drugs, etc.) of $6009.2 and direct nonmedical cost (rehabilitation or educational, rental, transportation, care, and others) of $18,859.8. The annual indirect costs (productivity loss from resignation and job adjustment) for families were $13,990.7. The total costs were $34,206.5. The results of the regression revealed that the mothers’ educational level was significantly associated with costs. Families with an interprovincial immigration background, a higher-than-average income, or children with more severe autism spectrum disorder had a greater possibility of higher direct, indirect, and overall costs. Autism spectrum disorder imposed a significant financial burden on the families of children with autism spectrum disorder.Lay abstractThis is the first comprehensive national study to explore the direct and indirect costs for families of children with autism spectrum disorder in China. The increasing prevalence of autism spectrum disorder highlights a growing need for resources to provide care for families of children with autism spectrum disorder. The medical and nonmedical costs and parents’ productivity loss have caused a serious burden on their families. Our objective is to estimate the direct and indirect costs for the families of children with autism spectrum disorder in China. The target population was parents of children with autism spectrum disorder. We analyzed the costs using cross-sectional data from a Chinese national family survey with children aged 2–6 years (N = 3236) who were clinically diagnosed with autism spectrum disorder. Family data from 30 provinces in China were obtained. Cost items included direct medical costs, direct nonmedical costs, and indirect costs. In this study, we found that the largest part of family costs for autism spectrum disorder are nonmedical costs and productivity loss. Autism spectrum disorder has imposed a huge economic burden on parents having children with autism spectrum disorder in China, who need more support than the current health care system provides.
      Citation: Autism
      PubDate: 2023-03-07T10:34:56Z
      DOI: 10.1177/13623613231158862
       
  • ‘I felt like my senses were under attack’: An interpretative
           phenomenological analysis of experiences of hypersensitivity in autistic
           individuals

    • Free pre-print version: Loading...

      Authors: Liesbeth Taels, Jasper Feyaerts, Marie Lizon, Melissa De Smet, Stijn Vanheule
      Abstract: Autism, Ahead of Print.
      While atypical sensory processes have become central to scientific explanatory models of autism, such models usually do not explicitly address first-person experiences of sensory processes by autistic individuals. Detailed phenomenological research of this subjective domain is nonetheless essential to ground explanatory accounts in the actual experiences and challenges faced by autistic individuals. Therefore, our study consisted of an interpretative phenomenological analysis of 18 semi-structured interviews with autistic individuals about their experiences of hypersensitivity. Overall, our analysis showed how hypersensitivity pertained to disturbances at a basic level of bodily self-experience and also affected other crucial phenomenological experiential dimensions such as the subjective perception of time and space, sense-making processes, intersubjectivity, and moods. Hypersensitivities were described by participants as intrusive experiences of being vulnerably exposed to overwhelming stimuli that invaded their bodies and were simultaneously related to an invasive, chaotic, unpredictable or threatening perception of the (social) environment. Our study highlights the impact of hypersensitivities on experiential domains outside the strict sensory register, thereby providing further evidence for altered sensory processing as a potential core mechanism involved in a variety of autistic symptoms. Our study also indicates the clinical importance of therapeutic interventions that act on a fragile sense of embodiment in autism.Lay abstractResearch shows that the way autistic individuals perceive and process sensory stimuli differs from those of non-autistic people. However, while current research often focuses on what sensory differences in autism are and which neurocognitive processes may explain these, it often does not explicitly address what it is like to experience the world through the senses of an autistic person. To explore this understudied dimension, we conducted 18 in-depth interviews with autistic individuals in order to better understand how they personally experienced hypersensitivity from a first-person perspective. Participants described hypersensitivity as a feeling of being bombarded by intrusive stimuli that seemed to invade their bodies and from which they had difficulties distancing themselves. They also indicated how due to hypersensitivity they often perceived their (social) environment as invasive, chaotic, unpredictable or threatening. Hypersensitivities were thus not only described as unsettling bodily experiences but also related to challenges in perceiving, understanding and interacting with the (social) world. By focussing on the subjective dimension of sensory processing in autism, our study thus highlights how sensory difficulties are not peripheral features of autism but play an essential part in the daily challenges faced by autistic individuals.
      Citation: Autism
      PubDate: 2023-03-06T08:59:45Z
      DOI: 10.1177/13623613231158182
       
  • Variable patterns of daily activity participation across settings in
           autistic youth: A latent profile transition analysis

    • Free pre-print version: Loading...

      Authors: Yun-Ju Chen, Eric Duku, Anat Zaidman-Zait, Peter Szatmari, Isabel M Smith, Wendy J Ungar, Lonnie Zwaigenbaum, Tracy Vaillancourt, Connor Kerns, Teresa Bennett, Mayada Elsabbagh, Ann Thompson, Stelios Georgiades
      Abstract: Autism, Ahead of Print.
      Participation in daily activities is often linked to functional independence and well-being, yet individual variability in participation and factors associated with that variation have rarely been examined among autistic youth. We applied latent profile analysis to identify subgroups of youth based on parent-reported activity participation frequency at home, school and community, as well as associations with youth characteristics, family demographics and environmental supportiveness among 158 autistic youth (aged 11–14 years at baseline). Three-, three- and two-profile solutions were selected for home, school and community settings, respectively; the most prevalent profiles were characterized by frequent home participation (73%), low participation in non-classroom activities at school (65%) and low community participation, particularly in social gatherings (80%), indicating participation imbalance across settings. More active participation profiles were generally associated with greater environmental support, higher cognitive and adaptive functioning and less externalizing behaviour. Latent transition analysis revealed overall 75% stability in profile membership over approximately 1 year, with a different home participation profile emerging at the second time-point. Our findings highlighted the variable participation patterns among autistic youth as associated with individual, family and environmental factors, thus stressing the need for optimizing person–environment fit through tailored supports to promote autistic youth’s participation across settings.Lay abstractWhat people do or engage in in their daily lives, or daily life participation, is often linked to their state of being happy and healthy, as well as potential for living independently. To date, little research has been conducted on daily activity participation by autistic youth at home, at school or in the community. Learning more about individual differences in participation levels and what might influence them can help to create custom supports for autistic youth and their families. In this study, 158 caregivers of autistic youth were asked how often their children took part in 25 common activities at two assessments, about one year apart. The analysis showed three profiles for each of the home and school settings and two profiles for the community setting. These profiles reflected distinct patterns in how often autistic youth took part in various daily activities, particularly in doing homework, school club activities and community gatherings. Most autistic youth were in profiles marked by often taking part at home but less often at school and in the community, and about three-fourths of them tended to stay in the same profile over time. Autistic youth with limited participation profiles were more likely to have lower scores on measures of cognitive ability and daily life skills and more challenging behaviour, and faced more barriers in their environment. These findings show how important it is to think about each autistic person’s strengths and weaknesses, and changing needs, to better support their daily life participation.
      Citation: Autism
      PubDate: 2023-03-01T04:57:23Z
      DOI: 10.1177/13623613231154729
       
  • Brief report: Evaluation of an adapted youth version of Parents Taking
           Action for parents of pre/adolescents with autism spectrum disorder in
           Colombia

    • Free pre-print version: Loading...

      Authors: Mariana Garcia Torres, Sandy Magaña, Fabricio Balcazar
      Abstract: Autism, Ahead of Print.
      The aim of this study was to evaluate the efficacy of the youth version of the program Parents Taking Action in Bogota, Colombia, using a quasi-experimental design. We hypothesized that parents in the treatment groups would improve in levels of knowledge, empowerment, self-efficacy, and use of strategies related to topics of adolescence and sexuality compared to the control group. We recruited 25 Colombian parents of pre/adolescent youth with autism spectrum disorder between the ages of 10 and 17 in Bogota. The intervention included four weekly sessions in which the new content about sexuality and adolescence was delivered. Twelve parents were in the intervention group and 13 were in the control group. Intervention participants significantly improved in Knowledge (t = 4.37 p 
      Citation: Autism
      PubDate: 2023-02-27T12:49:38Z
      DOI: 10.1177/13623613231155773
       
  • A portfolio analysis of autism research funding in Aotearoa New Zealand
           2007–2021

    • Free pre-print version: Loading...

      Authors: Lisa Marie Emerson, Elizabeth Pellicano, Ruth Monk, Melissa Lim, Jessica Heaton, Laurie McLay
      Abstract: Autism, Ahead of Print.
      Previously documented global trends in autism research funding have been skewed towards biology research, which is at odds with the priorities expressed by autistic and autism community members. We aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand, and to explore the views of the autistic and autism communities on this funding distribution. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We categorised the funding for autism research to enable comparison to that previously documented in other countries. We elicited the views of the autistic and autism communities in relation to the funded autism research, through an online survey and a series of focus groups. The largest proportion of money and number of grants was awarded to biological research. Community members expressed dissatisfaction with this pattern of funding, and noted that it does not address the needs and priorities of the autistic community. Community members suggested that the funding pattern indicated a lack of autistic consultation and engagement in research design and funding allocation. The priorities of the autistic and autism communities need to be considered by researchers and funders alike. We discuss how autistic inclusion in research can be supported through decision-making regarding funding and ethics relating to autism research.Lay AbstractWe aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We compared the funding distribution in Aotearoa New Zealand to other countries. We asked people from the autistic community and broader autism community whether they were satisfied with this funding pattern, and whether it aligned with what is important to them and to autistic people. We found that the majority of funding for autism research was awarded to biology research (67%). Members of the autistic and autism communities were dissatisfied with the funding distribution, and expressed a lack of alignment with what is important to them. People from the community indicated that the funding distribution did not address the priorities of autistic people, and that it indicated a lack of engagement with autistic people. Autism research funding needs to reflect the priorities of the autistic and autism communities. Autistic people need to be included in autism research and related funding decisions.
      Citation: Autism
      PubDate: 2023-02-20T06:02:49Z
      DOI: 10.1177/13623613231155954
       
  • Representation of autism in fictional media: A systematic review of media
           content and its impact on viewer knowledge and understanding of autism

    • Free pre-print version: Loading...

      Authors: Sandra C Jones, Chloe S Gordon, Simone Mizzi
      Abstract: Autism, Ahead of Print.
      Media depictions of autism have the potential to have either positive or detrimental impacts on the lives of autistic people. This systematic review aimed to examine (1) the accuracy and authenticity of fictional media portrayals of autism (Part A) and (2) the impact of viewing such portrayals on knowledge about autism and attitudes towards autistic people (Part B). Seventeen articles met the inclusion criteria and were included in the review: 14 for Part A and 3 for Part B, comprising five experimental studies. The media reviewed in Part A covered a 30-year period (1988–2017). Several stereotypical and unhelpful portrayals surfaced. Positive portrayals of autism highlighted strengths and reflected nuance. Overall, participants in the fiction conditions in Part B were significantly more likely to attribute positive traits to an autistic person than those in the control conditions, with medium effect sizes ranging from 0.57 to 0.73. There were no improvements in knowledge. Given the small number of studies included in this review, further evidence is needed to understand the conditions under which fictional media may be effective. There is also a need to develop measures that accurately and respectfully measure autistic people’s experiences of community knowledge and attitudes.Lay abstractThe way autism is represented in fictional media can impact people’s views of autistic people. For example, representations may contribute to negative views of autistic people as being unusual or dangerous, or they may challenge stereotypes and instead highlight the strengths of autistic people. This work aimed to review previous research to understand how autistic people have been represented in fictional media (Part A). It also sought to understand whether viewing fictional portrayals of autism has an impact on people’s knowledge of autism and attitudes towards autistic people (Part B). Of 14 studies that were included in Part A, several unhelpful and stereotypical portrayals of autism emerged. Positive portrayals were those that highlighted the strengths of autistic people and reflected nuance. There is a need for greater diversity in representation of autism in fictional media. For example, not all autistic people are white heterosexual males. Across the five studies included in Part B, there were no improvements in people’s knowledge of autism after watching or reading a short segment from a fictional TV series or novel that depicts an autistic person. Although there was a significant improvement in people’s attitudes towards autistic people, these findings do not provide a complete picture given the short length of the media exposure and small number of studies. Future studies should investigate how multiple exposures to the representation of autistic people in both fictional and non-fictional sources can affect people’s understanding of autism. There is also a need to develop more accurate and respectful ways of measuring people’s knowledge of, and attitudes towards, autism.
      Citation: Autism
      PubDate: 2023-02-20T05:59:29Z
      DOI: 10.1177/13623613231155770
       
  • Urban and rural differences in needs, service use and satisfaction among
           caregivers of autistic children in Morocco

    • Free pre-print version: Loading...

      Authors: MV De Jonge, M Boutjdir, T El Korchi, H Torres, A Karpur, A Shih, A El Idrissi
      Abstract: Autism, Ahead of Print.
      Understanding caregivers’ needs is crucial for service planning and empowering caregivers around the world. Although research on autism from Arab countries is emerging, many countries are still unrepresented. Moreover, within-country disparities are understudied. This study investigated differences in needs, service use, and satisfaction between urban or rural living caregivers of autistic children in Morocco. The “Andersen Behavioral Model of Health Services Use” served as a conceptual framework to investigate factors associated with receiving intervention and service satisfaction. Results from a survey among 131 Moroccan caregivers of autistic children revealed similarities and differences in urban and rural living caregivers’ challenges and needs. Children from urban communities had 12 times higher odds of receiving intervention despite similar age and verbal ability. Significantly, fewer children from rural communities attended school as compared with urban communities. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to reflect regional needs, resources, and practices. Addressing enabling factors such as costs, information barriers, or stigma may help reduce both global and within-country disparities in autism care.Lay AbstractIt is very important to understand the needs of caregivers to be able to empower caregivers and to develop or improve services around the world. Therefore, research in different regions is needed to understand differences in caregivers needs between countries, but also between areas within countries. This study investigated differences in needs and service use between caregivers of autistic children in Morocco, living in urban and rural areas. A total of 131 Moroccan caregivers of autistic children took part in the study and responded to an interview survey. The results showed both similarities and differences between urban and rural living caregivers’ challenges and needs. Autistic children from urban communities were much more likely to receive intervention and attend school than children from rural communities, even though age and verbal skills of the two groups of children were comparable. Caregivers expressed similar needs for improved care and education, but different challenges in caring. Limited autonomy skills in children were more challenging to rural caregivers, while limited social-communicational skills were more challenging to urban caregivers. These differences may inform healthcare policy-makers and program developers. Adaptive interventions are important to respond to regional needs, resources, and practices. In addition, the results showed the importance of addressing challenges as experienced by caregivers such as costs related to care, barriers in access to information, or stigma. Addressing these issues may help reduce both global and within-country differences in autism care.
      Citation: Autism
      PubDate: 2023-02-18T06:51:26Z
      DOI: 10.1177/13623613221150086
       
  • Attention control in autism: Eye-tracking findings from pre-school
           children in a low- and middle-income country setting

    • Free pre-print version: Loading...

      Authors: Georgia Lockwood Estrin, Luke Mason, Rashi Arora, Supriya Bhavnani, Jayashree Dasgupta, Sheffali Gulati, Teodora Gliga, Mark H Johnson
      Abstract: Autism, Ahead of Print.
      Alterations in the development of attention control and learning have been associated with autism and can be measured using the ‘antisaccade task’, which assesses a child’s ability to make an oculomotor response away from a distracting stimulus, and learn to instead anticipate a later reward. We aimed to assess these cognitive processes using portable eye-tracking in an understudied population of pre-school children with and without a diagnosis of autism spectrum disorder in community settings in New Delhi, India. The eye-tracking antisaccade task was presented to children in three groups (n = 104) (children with a clinical diagnosis of autism spectrum disorder or intellectual disability and children meeting developmental milestones). In accordance with findings from high-income, laboratory-based environments, children learnt to anticipate looks towards a reward, as well as inhibit eye-movements towards a distractor stimulus. We also provide novel evidence that while differences in inhibition responses might be applicable to multiple developmental conditions, a reduced learning to anticipate looks towards a target in this age group may be specific to autism. This eye-tracking task may, therefore, have the potential to identify and assess autism specific traits across development, and be used in longitudinal research studies such as investigating response to intervention in low-resource settings.Lay abstractThe development of cognitive processes, such as attention control and learning, has been suggested to be altered in children with a diagnosis of autism spectrum disorder. However, nearly all of our understanding of the development of these cognitive processes comes from studies with school-aged or older children in high-income countries, and from research conducted in a controlled laboratory environment, thereby restricting the potential generalisability of results and away from the majority of the world’s population. We need to expand our research to investigate abilities beyond these limited settings. We address shortcomings in the literature by (1) studying attention control and learning in an understudied population of children in a low- and middle-income country setting in India, (2) focusing research on a critical younger age group of children and (3) using portable eye-tracking technology that can be taken into communities and healthcare settings to increase the accessibility of research in hard-to-reach populations. Our results provide novel evidence on differences in attention control and learning responses in groups of children with and without a diagnosis of autism spectrum disorder. We show that learning responses in children that we assessed through a portable eye-tracking task, called the ‘antisaccade task’, may be specific to autism. This suggests that the methods we use may have the potential to identify and assess autism-specific traits across development, and be used in research in low-resource settings.
      Citation: Autism
      PubDate: 2023-01-26T01:40:06Z
      DOI: 10.1177/13623613221149541
       
  • How can psychologists meet the needs of autistic adults'

    • Free pre-print version: Loading...

      Authors: Rachel Jellett, Rebecca L Flower
      Abstract: Autism, Ahead of Print.
      In a recent editorial, Mandy declared an autism mental health crisis and proposed six ideas for how this might be addressed, with which we agree. However, we propose that for these ideas (e.g. training for mental health professionals) to be implemented for psychologists, assumptions about best practice need to be assessed considering the evolving conceptualisation of autism. The formation and development of a therapeutic alliance between a psychologist and client has been established as an important ‘common factor’ that impacts the efficacy of therapy. If one considers the double empathy problem and views autism through a neurodiversity lens, the development of a therapeutic alliance between a psychologist and client of different neurotypes might require an alternative approach to standard practice. We propose that psychologists (if they are, for example, non-autistic and working with an autistic client), are at risk of misinterpreting their clients’ communication and needs. As such, we consider the notion of cultural competency, and how the profession of psychology can move forward to help psychologists work effectively with autistic clients, learning from autistic people, including autistic psychologists.Lay abstractIn a recent editorial, Mandy described an autism mental health crisis because autistic people are more likely to experience mental health concerns, yet they are less likely to get help. When autistic people do seek support, services tend not to be well matched to their needs. Alongside the six ideas Mandy suggested for addressing the mental health crisis, we think it is essential for psychologists to start changing the way they work to improve the person-environment fit for autistic clients. The relationship between a psychologist and their client influences the gains a client makes from engaging in therapy. The way psychologists are trained to build an effective working relationship with clients is based on neurotypical communication styles. The double empathy problem tells us that autistic clients relate to others differently to non-autistic clients, and so we propose that psychologists, especially when not autistic themselves, need to build the therapeutic relationship in a different way. We feel this is important, as the relationship between a psychologist and client is understood to be an important factor in how much the client can benefit from therapy. In this letter, we draw upon Bulluss’ call for cultural competency when working with autistic clients, and further insights from autistic psychologists, and propose that psychologists rethink some taken-for-granted aspects of practice to be better able to create a sense of interpersonal safety when working with autistic clients.
      Citation: Autism
      PubDate: 2023-01-14T06:18:44Z
      DOI: 10.1177/13623613221147346
       
  • The factor structure and measurement invariance of the Autism Spectrum
           Quotient-28: A cross-cultural comparison between Malaysia and the
           Netherlands

    • Free pre-print version: Loading...

      Authors: Zhong Jian Chee, Anke M Scheeren, Marieke De Vries
      Abstract: Autism, Ahead of Print.
      Despite several psychometric advantages over the 50-item Autism Spectrum Quotient, an instrument used to measure autistic traits, the abridged AQ-28 and its cross-cultural validity have not been examined as extensively. Therefore, this study aimed to examine the factor structure and measurement invariance of the AQ-28 in 818 Dutch (Mage = 37.4, 581 females, 233 males, 4 others) and 437 Malaysian (Mage = 23.0, 328 females, 99 males, 10 others) participants from the general population. The hierarchical structure of the AQ-28 showed fair and good fit in Malaysia and in the Netherlands, respectively. A multi-group invariance analysis supported that the AQ-28 is cross-culturally invariant. Malaysians (M = 68.63, SD = 8.33) scored significantly higher than Dutch participants (M = 51.48, SD = 10.30) on the AQ-28 while gender was controlled for. While the measurement invariance suggests that the AQ-28 functions similarly in Malaysia and the Netherlands in terms of structure, exploratory analyses showed 11 items with differential item functioning. Hence, while the AQ-28 possesses a stable factor structure and appears to measure the same latent traits in Malaysia and the Netherlands, some items potentially display cultural bias which, in turn, might explain the differences in AQ scores.Lay abstractThe AQ-28 is a questionnaire measuring autistic traits, that is, traits that are related to Autism Spectrum Conditions, but its reliability in other cultures has not been thoroughly evaluated. We, therefore, tested whether the properties of the AQ-28 are comparable between two countries with different cultures, Malaysia and the Netherlands. A total of 437 Malaysian and 818 Dutch participants completed the AQ-28 online. We measured whether the AQ-28 measures autistic traits similarly in Malaysia and the Netherlands. The AQ-28 measures autistic traits similarly, and the reliability was acceptable and good in the general population of Malaysia and the Netherlands, respectively. However, Malaysians scored higher than Dutch participants. Moreover, 11 AQ-28 items showed cultural bias, indicating that these items are answered/interpreted differently in Malaysia and the Netherlands. Cross-cultural differences in interpreting, reporting, and/or expressing autistic traits highlighted in this study could potentially explain why some items are culturally biased and why Malaysians score higher on these items. The findings of this work imply that cutoff scores derived from one culture should not be generalised to another culture. Moreover, the findings are informative for future development of culturally neutral or appropriate screening and diagnostic tools for autism.
      Citation: Autism
      PubDate: 2023-01-12T09:00:46Z
      DOI: 10.1177/13623613221147395
       
  • Autism research capacity building in Northern Mexico: Preliminary
           evaluation of an ongoing process

    • Free pre-print version: Loading...

      Authors: Georgina Perez Liz, Guillermo Vela, Arturo Vela, Juan R Maldonado Coronado, Patricia Sanchez Lizardi, Diana L Robins
      Abstract: Autism, Ahead of Print.
      Research capacity building is a process by which individuals and organizations develop skills and infrastructure resulting in greater ability to conduct useful research. Frequently, research quality and productivity measures focus on outcomes, such as peer-reviewed publications or grants awarded. Such distal measures are not informative when measuring initial stages of research, a common situation in low- and middle-income countries. This study used Cooke’s six-principle framework to assess the progress of an autism research collaborative in northern Mexico. We established 64 criteria across the six principles and rated them as Not Started, In Progress, or Achieved, based on narratives and process documentation collected for this purpose. Ratings were established for the years 2018, 2020, and 2022, which correspond to Years 5, 7, and 9 since the beginning of the collaborative, respectively. As of 2022, Principles 2 and 3 (“Close to practice” and “Linkages, collaborations, and partnerships,” respectively) had all begun; no criteria were rated as Not started. The principles with the highest Achieved rates were “Linkages, collaborations, and partnerships” (90%), and “Infrastructure” (Principle 6, 70%). Cooke’s research capacity building framework is a useful way to monitor progress of research capacity building and contribute to harmonious development of relevant principles at different levels.Lay abstractTo inform improvement of care and public policy, quality research is required. Conducting research projects requires skills and infrastructure. Research capacity building is the process by which individuals and organizations develop greater ability to conduct useful research. However, in the scientific community, research quality and productivity measures are often focused on long-term products, such as publications or grants awarded. Those measures are not helpful when measuring initial stages of research, a common situation in low- and middle-income countries. We used a six-principle framework designed by J. Cooke to assess the progress of an autism research collaborative in northern Mexico. We established 64 criteria across the six principles, and rated them as Not Started, In Progress, or Achieved, based on narratives and process documentation collected for this purpose. Ratings were established for the Years 2018, 2020, and 2022. The principles with the highest Achieved rates were “Linkages, collaborations, and partnerships” (90%), and “Infrastructure” (Principle 6, 70%). Cooke’s research capacity building framework is a useful way to monitor progress of research capacity building and contribute to harmonious development of relevant principles at different levels.
      Citation: Autism
      PubDate: 2023-01-11T06:24:55Z
      DOI: 10.1177/13623613221145787
       
  • Age of autism diagnosis in Latin American and Caribbean countries

    • Free pre-print version: Loading...

      Authors: Cecilia Montiel-Nava, Maria C Montenegro, Ana C Ramirez, Daniel Valdez, Analia Rosoli, Ricardo Garcia, Gabriela Garrido, Sebastian Cukier, Alexia Rattazzi, Cristiane Silvestre Paula
      Abstract: Autism, Ahead of Print.
      An earlier diagnosis of autism spectrum disorder might lead to an earlier intervention, yet knowledge and awareness of autism spectrum disorder in Latin America and Caribbean Countries are limited. A later autism spectrum disorder diagnosis has been associated with negative consequences, as it might imply later access to services. This study aims to identify factors associated with the age of autism spectrum disorder diagnosis as reported by 2520 caregivers of autistic children from six Latin America and Caribbean Countries. Results indicate that on average, caregivers were concerned about their child’s development by 22 months of age; however, the diagnosis was 24 months later. Current age of autistic individuals, better language abilities, and having public health coverage increased the age of diagnosis. On the contrary, the presence of medical comorbidities, severity level, and type of diagnosis decreased the age of diagnosis. The age of diagnosis of autistic individuals in Latin America and Caribbean Countries corresponded to the start of formal schooling despite a much earlier age of first noticed developmental concern, highlighting the need to reduce this age gap and increase children’s probability of benefiting from early intervention. Taken together, autism spectrum disorder personal/clinical characteristics and access to health service are the main determinants for the age of diagnosis.Lay abstractAn earlier diagnosis of autism spectrum disorder might lead to earlier intervention. However, people living in Latin American and Caribbean countries do not have much knowledge about autism spectrum disorder symptoms. It has been suggested that the older a child is when diagnosed, the fewer opportunities he or she will have to receive services. We asked 2520 caregivers of autistic children in six different Latin America and Caribbean Countries, the child’s age when they noticed some developmental delays and their child’s age when they received their first autism spectrum disorder diagnosis. Results indicate that, on average, caregivers were concerned about their child’s development by 22 months of age; however, the diagnosis was received when the child was 46 months of age. In addition, older children with better language abilities and public health coverage (opposed to private health coverage) were diagnosed later. On the contrary, children with other medical problems and more severe behaviors received an earlier diagnosis. In our study, children were diagnosed around the time they entered formal schooling, delaying the access to early intervention programs. In summary, the characteristics of the autistic person and the type of health coverage influence the age of diagnosis in children living in Latin America and Caribbean Countries.
      Citation: Autism
      PubDate: 2023-01-05T12:46:57Z
      DOI: 10.1177/13623613221147345
       
  • Parent-to-parent support among parents of children with autism: A review
           of the literature

    • Free pre-print version: Loading...

      Authors: James D Lee, Adriana Kaori Terol, Christy D Yoon, Hedda Meadan
      Abstract: Autism, Ahead of Print.
      Parents of autistic children have historically reported hardships related to raising their children. However, the access to resources related to the childrearing of an autistic child is not equitable, therefore resulting in exacerbated difficulties for parents in low-resource settings. In these situations, peer support may be a protective factor for parental resilience in which they receive various supports from other parents of an autistic child with similar experiences. Despite its potential utility, little is known about such parent-to-parent support as evidenced by no synthesis of relevant literature. To address this gap, we present a scoping review of 25 studies that included parent-to-parent support among parents of autistic children. Across these studies, a total of 141 and 747 parents participated as parent mentors and mentees with some heterogeneity in their demographic characteristics. We also identified how parent mentors were trained to provide support to their peers and social validity data related to parent-to-parent support and provided implications for future intervention research.Lay AbstractParents of autistic children have long reported feelings of isolation and increased stress during and after receiving their child’s diagnosis. Increasing global prevalence of autism also calls for increased services and supports to meet the needs of these families, but most parents who live in low-resource settings still report exacerbated barriers. This may indicate the need for diversifying intervention delivery models to increase contextual fit and enhance implementation effects for different populations. For example, many parents have reported parent-to-parent (P2P) model to be a source of emotional support, advocacy, and knowledge related to their child’s diagnosis, and practical advice. However, little is known about this topic due to the lack of synthesis of relevant autism literature. To address this gap, we conducted a literature review to gain a deeper understanding of how P2P support is used. We identified 25 studies based on our inclusion and exclusion criteria, which we coded to extract variables such as demographic information of participants, types of P2P, dosage, target outcomes, and social validity. About half of studies focused on providing support groups for parents, and the other half focused on individual matching and mentoring for skill acquisition of parents. Across the included 25 studies, a total of 141 parents participated as parent mentors and 747 parents as parent mentees. We also present implications for future research.
      Citation: Autism
      PubDate: 2023-01-02T06:12:19Z
      DOI: 10.1177/13623613221146444
       
  • Acceptability and feasibility of a parent-mediated social-communication
           therapy for young autistic children in Brazil: A qualitative
           implementation study of Paediatric Autism Communication Therapy

    • Free pre-print version: Loading...

      Authors: Priscilla Brandi Gomes Godoy, Lorna McWilliams, Leticia Rodrigues da Silveira, Mirian de Cesaro Revers Biasão, Fernanda Speggiorin Pereira Alarcão, Leonardo Seda, Renata Generoso Campoli, Holan Liang, Gauri Divan, Kathy Leadbitter, Jonathan Green, Elizabeth Shephard
      Abstract: Autism, Ahead of Print.
      Effective support for autistic individuals is lacking in Brazil. Few centres offer services and those that do are limited in therapeutic options and geographical location. Paediatric Autism Communication Therapy is a low-intensity, evidence-based parent-mediated social-communication intervention that may be useful for this scenario. This implementation study aimed to assess the acceptability and feasibility of Paediatric Autism Communication Therapy for young autistic children (aged 2–10 years) in Brazil. Parents (n = 18) of 2- to 10-year-old autistic children and clinicians (n = 20) who work with autistic children in Brazil were interviewed and the data analysed using thematic analysis to explore their perceptions concerning the acceptability and feasibility of Paediatric Autism Communication Therapy. In addition, Paediatric Autism Communication Therapy was delivered to a case series of 15 further parent–child dyads; these parents were interviewed at the end of the therapy, and the data were analysed using thematic analysis. All parents and clinicians had favourable opinions about the acceptability, feasibility and perceived effectiveness of a parent-mediated intervention conducted mainly in the home. However, they also highlighted obstacles concerning the implementation of Paediatric Autism Communication Therapy in Brazil, especially related to engaging Brazilian parents in a parent-mediated model of therapy. Based on these data, minor adaptations were made to the original Paediatric Autism Communication Therapy protocol to facilitate the implementation of the intervention in Brazil.Lay abstractParents of autistic children and health professionals who work with autistic children in Brazil had positive views about introducing Paediatric Autism Communication Therapy as a therapy for autistic children in Brazil. The parents and clinicians also mentioned some difficulties about using Paediatric Autism Communication Therapy in Brazil. We made adaptations to Paediatric Autism Communication Therapy to address these difficulties. Paediatric Autism Communication Therapy is a therapy to support the development of social and communication skills for autistic children aged 2–10 years. The therapy is conducted with the autistic child’s parent. Paediatric Autism Communication Therapy has not been used in Brazil before. There are few therapy options available for autistic children in Brazil and we believed that Paediatric Autism Communication Therapy may be useful. We asked three groups of people in Brazil about their views of Paediatric Autism Communication Therapy, after explaining how the therapy works. Group 1 included 18 parents of autistic children aged 2–10 years. Group 2 included 20 health professionals such as psychologists who work with autistic children. Group 3 included 15 parents of autistic children aged 2–7 years who received the Paediatric Autism Communication Therapy. We learned that parents and clinicians felt that Paediatric Autism Communication Therapy would be a beneficial therapy for autistic children in Brazil. We also found out about the challenges of using Paediatric Autism Communication Therapy in Brazil. We used these findings to make small cultural adaptations to Paediatric Autism Communication Therapy to make it more suitable for Brazil.
      Citation: Autism
      PubDate: 2023-01-02T06:06:58Z
      DOI: 10.1177/13623613221144501
       
 
JournalTOCs
School of Mathematical and Computer Sciences
Heriot-Watt University
Edinburgh, EH14 4AS, UK
Email: journaltocs@hw.ac.uk
Tel: +00 44 (0)131 4513762
 


Your IP address: 35.175.107.142
 
Home (Search)
API
About JournalTOCs
News (blog, publications)
JournalTOCs on Twitter   JournalTOCs on Facebook

JournalTOCs © 2009-