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.
Similar Journals
Journal Cover
Autism
Journal Prestige (SJR): 1.739
Citation Impact (citeScore): 4
Number of Followers: 193  
 
  Hybrid Journal Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1362-3613 - ISSN (Online) 1461-7005
Published by Sage Publications Homepage  [1175 journals]
  • The ‘double empathy problem’: Ten years on

    • Free pre-print version: Loading...

      Authors: Damian Milton, Emine Gurbuz, Betriz Lopez
      Pages: 1901 - 1903
      Abstract: Autism, Volume 26, Issue 8, Page 1901-1903, November 2022.

      Citation: Autism
      PubDate: 2022-10-20T08:33:01Z
      DOI: 10.1177/13623613221129123
      Issue No: Vol. 26, No. 8 (2022)
       
  • Categorical perception of Mandarin lexical tones in language-delayed
           autistic children

    • Free pre-print version: Loading...

      Authors: Yicheng Rong, Yi Weng, Fei Chen, Gang Peng
      Abstract: Autism, Ahead of Print.
      Enhanced pitch perception has been identified in autistic individuals, but it remains understudied whether such enhancement can be observed in the lexical tone perception of language-delayed autistic children. This study examined the categorical perception of Mandarin lexical tones in 23 language-delayed autistic children and two groups of non-autistic children, with one matched on chronological age (n = 23) and the other on developmental age in language ability (n = 23). The participants were required to identify and discriminate lexical tones. A wider identification boundary width and a lower between-category discrimination accuracy were found in autistic children than their chronological-age-matched non-autistic peers, but the autistic group exhibited seemingly comparable performance to the group of developmental-age-matched non-autistic children. While both non-autistic groups displayed a typical categorical perception pattern with enhanced sensitivity to between-category tone pairs relative to within-category ones, such a categorical perception pattern was not observed in the autistic group. These findings suggest among language-delayed autistic children with a developmental age around 4, categorical perception is still developing. Finally, we found categorical perception performance correlated with language ability, indicating autistic children’s language disability might be predictive of their poor categorical perception of speech sounds.Lay abstractSome theories suggested that autistic people have better pitch perception skills than non-autistic people. However, in a context where pitch patterns are used to differentiate word meanings (i.e. lexical tones), autistic people may encounter difficulties, especially those with less language experience. We tested this by asking language-delayed autistic children to identify and discriminate two Mandarin lexical tones (/yi/ with Tone 1, meaning ‘clothes’; /yi/ with Tone 2, meaning ‘aunt’; /yi/: the standard romanization of Mandarin Chinese). On average, these autistic children were 7.35 years old, but their developmental age in language ability was 4.20, lagging behind 7-year-old non-autistic children in terms of language ability. Autistic children’s performance in identifying and discriminating lexical tones was compared with two groups of non-autistic children: one group was matched with the autistic group on age, and the other was matched based on language ability. Autistic children performed differently from the non-autistic children matched on age, while autistic and non-autistic children matched on language ability exhibited seemingly similar performance. However, both the non-autistic groups have developed the perceptual ability to process lexical tones as different categories, but this ability was still developing in autistic children. Finally, we found autistic children who performed worse in identifying lexical tones had poorer language ability. The results suggest that language disability might have adverse influence on the development of skills of speech sound processing.
      Citation: Autism
      PubDate: 2022-11-24T05:34:56Z
      DOI: 10.1177/13623613221138687
       
  • Staring spells in children with autism spectrum disorder: A clinical
           dilemma

    • Free pre-print version: Loading...

      Authors: Ajay Goenka, Laura D Fonseca, Sarah G Yu, Monica C George, Caroline Wong, Adrienne Stolfi, Gogi Kumar
      Abstract: Autism, Ahead of Print.
      To assess the role of clinical features in diagnosing seizures in children with autism spectrum disorder who present with staring spells. A 10-year retrospective chart analysis of autism spectrum disorder patients aged 3–14 years was performed at a tertiary care children’s hospital. Patient demographics, clinical presentation, and epileptic seizure versus non-epileptic spell diagnosis were assessed. Target episodes of staring spells were captured during a long-term electroencephalogram monitoring record. Multilevel likelihood ratios and a receiver operating characteristic curve were determined using 8 of the 11 clinical variables. Among the cohort of 140 patients with autism spectrum disorder, 16% were diagnosed with epileptic seizures with the most common seizure being atypical absence seizures (64%). Clinical semiology differed between those diagnosed with epileptic seizures versus those diagnosed with non-epileptic spells in the average duration of episodes (42 s vs 87 s), frequency of spells per week (6 vs 11.5 spells), increase in frequency of staring spells over time (100% vs 40%), and response to verbal stimulation (0% vs 100%), respectively. Multilevel likelihood ratios based on the receiver operating characteristic curves and clinical semiology features may be helpful in differentiating epileptic seizures from non-epileptic spells in children with autism spectrum disorder.Lay It is a common occurrence for children with autism spectrum disorder to be diagnosed with staring spells. Staring spells are defined as periods of time when children “space out” and are subcategorized as either “absence seizures” (brain activity resembling a seizure but with no physical seizure symptoms) or “non-epileptic spells” (inattentiveness or daydreaming). Due to the subtle characteristics of staring spells, they are usually diagnosed via long-term video electroencephalogram. The child is monitored for 3–5 days with an electroencephalogram which records brain waves. An electroencephalogram may be difficult to perform in children with autism spectrum disorder due to behavior, cognitive, or sensory concerns. Therefore, we wanted to investigate other clinical characteristics that may help us differentiate between epileptic seizures versus non-epileptic spells in children with autism spectrum disorder presenting with staring spells. We reviewed 140 charts retrospectively from the years of 2010–2021. We abstracted demographic and clinical information from the electronic medical record system and reviewed electroencephalogram videos to group the 140 children into epileptic seizure diagnosis group versus non-epileptic spell group. Of the 140 children in this study, 22 were diagnosed with epileptic seizures and the remaining were diagnosed with non-epileptic spells. We found that the two groups differed in certain clinical characteristics such as how long the staring spells lasted, how many staring spells the child had in 1 week, and whether they responded to verbal commands. We believe that clinical features may be helpful in differentiating epileptic seizures from non-epileptic spells in children with autism spectrum disorder.
      Citation: Autism
      PubDate: 2022-11-23T08:25:27Z
      DOI: 10.1177/13623613221137240
       
  • Autistic adults and adults with sub-clinical autistic traits differ from
           non-autistic adults in social-pragmatic inferencing and narrative
           discourse

    • Free pre-print version: Loading...

      Authors: Katja Dindar, Soile Loukusa, Eeva Leinonen, Leena Mäkinen, Laura Mämmelä, Marja-Leena Mattila, Hanna Ebeling, Tuula Hurtig
      Abstract: Autism, Ahead of Print.
      Since prior research has mostly focused on children, less is known about how autistic adults and adults with sub-clinical autistic traits interpret pragmatically complex social situations and the kind of narrative discourse they produce. 32 autistic young adults, 18 young adults with sub-clinical autistic traits and 34 non-autistic young adults participated this study. They were shown videos of social interactions which required complex pragmatic processing and were asked to freely narrate what they thought was occurring in each video. Their narratives were coded for aspects of social-pragmatic and narrative discourse. The results indicate that the autistic and sub-clinical groups differed from the comparison group in what they inferred as relevant video content. The narratives of the autistic group also differed from the comparison group in meaning, focus and emphasis on details. In addition, the comparison group produced more holistic narratives whereas the autistic and sub-clinical groups produced more atomistic narratives. Correlational findings indicated that perceptual reasoning has stronger associations with pragmatic inferencing in the autistic and sub-clinical groups than in the comparison group. This study suggests that autistic adults and adults with sub-clinical autistic traits differ from non-autistic adults in what they perceive to be relevant in their social world.Lay AbstractPrevious social-pragmatic and narrative research involving autistic individuals has mostly focused on children. Little is known about how autistic adults and adults who have autistic traits but do not have a diagnosis of an autism spectrum disorder (ASD) interpret complex social situations and tell narratives about these situations. We asked 32 autistic young adults, 18 adults with autistic traits but no ASD diagnosis, and 34 non-autistic young adults to watch socially complex situations and freely tell narratives about what they thought was occurring in each situation. These narratives were analysed for how the participants had interpreted the situations and for the type of narratives they produced. We found that the groups had both similarities and differences. Regarding the differences, we found that the autistic adults and adults with autistic traits interpreted the situations differently from the non-autistic adults. The autistic adults found different aspects of the situations relevant, had different foci and placed greater importance on details than the non-autistic adults. The autistic adults and adults with autistic traits also differed from the non-autistic adults by having more detail- and event-focused narratives whereas the non-autistic adults were more likely to base their narratives on their own broad interpretations of the situations. Perceptual processing styles appeared to play a bigger role in interpreting the situations for the autistic adults and adults with autistic traits than the non-autistic adults. Our findings suggest that autistic adults and adults with autistic traits focus on different aspects in their social world than non-autistic adults.
      Citation: Autism
      PubDate: 2022-11-23T08:23:28Z
      DOI: 10.1177/13623613221136003
       
  • Knowing and accepting oneself: Exploring possibilities of self-awareness
           among working autistic young adults

    • Free pre-print version: Loading...

      Authors: Hanna Bertilsdotter Rosqvist, Lill Hultman, Johan Hallqvist
      Abstract: Autism, Ahead of Print.
      Autistic people have historically been described as incapable of developing a deeper sense of self-awareness, and autistic understandings of self-awareness have been largely disregarded. The aim of this study is to explore the way young autistic adults try to understand their functionality and who they are, or to develop their sense of self-awareness, in work and in private life contexts. In 12 qualitative interviews conducted with four autistic adults without learning difficulties, we identified a rich set of reflections on knowing and accepting oneself. The overarching theme of self-knowledge has three subthemes: learning from previous experiences, learning about oneself by securing the support of others, and understanding and accepting autistic functionality. The strategy of self-knowledge was used by these young adults to help them achieve functional lives in the work and private domains. Our results show that young autistic adults both actively explore and develop their self-awareness. We suggest that it is important for practitioners and employers working with autistic individuals to engage with their journeys of self-awareness as a vital part of understanding and supporting them.Lay abstractWhen researchers and professionals talk about autism, they commonly point out problems and risks with autism or being autistic. Several interventions are based on the idea of the problems and risks of autism. Another way of talking about autism is to point out autistic people’s strengths and strategies which they use to handle barriers and problems in their lives in order to live good lives on their own terms. In this article, the researchers explore how autistic young adults formulate their own difficulties, strengths and support needs in order to get right support from support people. To be able to formulate this, autistic people need to get to know oneself and one’s own way of functioning. Autistic own self-knowledge must be central when formal support people, such as social workers, formulate support and interventions aimed at helping autistic people, in order for the support/intervention to be helpful.
      Citation: Autism
      PubDate: 2022-11-21T01:32:18Z
      DOI: 10.1177/13623613221137428
       
  • Diversifying autism neuroimaging research: An arterial spin labeling
           review

    • Free pre-print version: Loading...

      Authors: Laust V Knudsen, Abigail J Sheldrick, Manouchehr S Vafaee, Tanja Maria Michel
      Abstract: Autism, Ahead of Print.
      Cognition and brain homeostasis depends on cerebral blood flow to secure adequate oxygen and nutrient distribution to the brain tissue. Altered cerebral blood flow has previously been reported in individuals diagnosed with autism spectrum condition in comparison to non-autistics. This phenomenon might suggest cerebral blood flow as a potential biomarker for autism spectrum condition. Major technological advancement enables the non-invasive and quantitative measurement of cerebral blood flow via arterial spin labeling magnetic resonance imaging. However, most neuroimaging studies in autistic individuals exploit the indirect blood oxygen level dependent functional magnetic resonance imaging signal instead. Therefore, this review examines the use of arterial spin labeling to further investigate the neurobiology of the autism spectrum condition. Followed by a comparison of results from molecular imaging and arterial spin labeling studies and a discussion concerning the future direction and potential of arterial spin labeling in this context. We found that arterial spin labeling study results are consistent with those of molecular imaging, especially after considering the effect of age and sex. Arterial spin labeling has numerous application possibilities besides the quantification of cerebral blood flow, including assessment of functional connectivity and arterial transit time. Therefore, we encourage researchers to explore and consider the application of arterial spin labeling for future scientific studies in the quest to better understand the neurobiology of autism spectrum condition.Lay abstractBrain function and health depend on cerebral blood flow to secure the necessary delivery of oxygen and nutrients to the brain tissue. However, cerebral blood flow appears to be altered in autistic compared to non-autistic individuals, potentially suggesting this difference to be a cause and potential identification point of autism. Recent technological development enables precise and non-invasive measurement of cerebral blood flow via the magnetic resonance imaging method referred to as arterial spin labeling. However, most neuroimaging studies still prefer using the physiologically indirect measure derived from functional magnetic resonance imaging. Therefore, this review examines the use of arterial spin labeling to further investigate the neurobiology of autism. Furthermore, the review includes a comparison of results from molecular imaging and arterial spin labeling followed by a discussion concerning the future direction and potential of arterial spin labeling. We found that arterial spin labeling study results are consistent with those of molecular imaging, especially after considering the effect of age and sex. In addition, arterial spin labeling has numerous application possibilities besides the quantification of cerebral blood flow. Therefore, we encourage researchers to explore and consider the application of arterial spin labeling for future scientific studies in the quest to better understand the neurobiology of autism.
      Citation: Autism
      PubDate: 2022-11-21T01:28:58Z
      DOI: 10.1177/13623613221137230
       
  • Co-design of an NHS primary care health check for autistic adults

    • Free pre-print version: Loading...

      Authors: Helen Taylor, Barry Ingham, David Mason, Tracy Finch, Colin Wilson, Clare Scarlett, Sebastian Moss, Carole Buckley, Anna Urbanowicz, Dora Raymaker, Charlotte Seiboth, Rhianna Lees, Deborah Garland, Malcolm Osbourne, Nicholas Lennox, Sally-Ann Cooper, Christina Nicolaidis, Jeremy R Parr
      Abstract: Autism, Ahead of Print.
      Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people’s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person’s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals.
      Citation: Autism
      PubDate: 2022-11-21T01:25:31Z
      DOI: 10.1177/13623613221132921
       
  • Autistic women’s experiences of self-compassion after receiving
           their diagnosis in adulthood

    • Free pre-print version: Loading...

      Authors: Rosemarie B Wilson, Andrew R Thompson, Georgina Rowse, Richard Smith, Amber-Sophie Dugdale, Megan Freeth
      Abstract: Autism, Ahead of Print.
      Knowledge of autistic individuals’ experiences of self-compassion is very limited. This study investigated autistic women’s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women completed semi-structured interviews analysed using interpretative phenomenological analysis. Three super-ordinate themes were identified: ‘Disconnect between the autistic self and experience of societal expectations’ (the burden of conformity; autism is misunderstood; social challenges; mental health impact); ‘Unmasking: the process of self-understanding’ (autonomy and self-compassion; validation and grief) and ‘Impact on relationships’ (diagnosis disclosure dilemmas; connection and understanding). Frustration with society’s misconceptions of autism and unhelpful thinking styles were presented as barriers to self-compassion. Most participants reported that their diagnosis had led to the development of a greater sense of self-understanding, which facilitated self-compassion. Some participants suggested their own increased understanding of autism facilitated their compassion towards others. Findings from this study have clinical implications for increasing understanding about autistic women’s experiences of self-compassion and possibly ways to facilitate its development, to enhance well-being.Lay abstractKnowledge of autistic individuals’ experiences of self-compassion is very limited. This study investigated autistic women’s experiences of self-compassion after receiving their diagnosis in adulthood. Eleven autistic women were interviewed about their experiences of receiving their diagnosis in adulthood and their experiences of self-compassion. Systematic analysis of the interview transcripts revealed common themes in the participants’ experiences. Participants reported that their autism diagnosis helped them to better understand themselves, particularly when reflecting on problematic past experiences. After receiving an autism diagnosis, participants described being able to relate to them with greater self-kindness compared to previous self-criticism; this included allowing themselves to assert their needs and engage in self-care activities. Participants spoke about having difficult social experiences, including feeling pressure to conform to expectations in society and often feeling misunderstood. The findings highlight the barriers autistic women face obtaining their diagnoses and demonstrate the need for autism training for professionals to support early identification. Findings from this study suggest that interventions aimed at developing self-compassion could support and enhance autistic women’s well-being.
      Citation: Autism
      PubDate: 2022-11-14T12:14:13Z
      DOI: 10.1177/13623613221136752
       
  • Exploring communicative competence in autistic children who are minimally
           verbal: The Low Verbal Investigatory Survey for Autism (LVIS)

    • Free pre-print version: Loading...

      Authors: Adam Naples, Elena J Tenenbaum, Richard N Jones, Giulia Righi, Stephen J Sheinkopf, Inge-Marie Eigsti
      Abstract: Autism, Ahead of Print.
      Approximately 30% of autistic children are considered minimally verbal. The field lacks an efficient and reliable measure of communicative capacity among minimally verbal autistic children. Improved methods are needed to determine which children are at greatest risk for minimally verbal outcomes to better target interventions. Here, we present the Low Verbal Investigatory Survey (LVIS), a brief parent-report measure designed to assess communicative capacity among minimally verbal autistic children. The 36-item easy-to-complete LVIS was developed to capture the atypical language trajectories associated specifically with autism. We report pilot results from a sample of 147 children (1–8 years) whose caregivers completed the LVIS as part of other studies. Principal components analysis was used to assess dimensionality of the LVIS; composite scores were compared with existing measures of communicative capacity, all of which take significantly more time and training to administer and score. Scores on the LVIS were strongly correlated with existing gold-standard measures of communication. Presence of atypical vocalizations was determined to be particularly relevant for symptoms of autism as well as language and cognitive abilities. These findings provide initial validation of a tool designed to capture multiple dimensions of communicative capacity in children with minimal or low verbal skills.Lay abstractApproximately one in three autistic children is unable to communicate with language; this state is often described as minimally verbal. Despite the tremendous clinical implications, we cannot predict whether a minimally verbal child is simply delayed (but will eventually develop spoken language) or will continue to struggle with verbal language, and might therefore benefit from learning an alternative form of communication. This is important for clinicians to know, to be able to choose the most helpful interventions, such as alternative forms of communication. In addition, the field lacks a standard definition of “minimally verbal.” Even when we do agree on what the term means (e.g. fewer than 20 words), describing a child based on their lack of words does not tell us whether that child is communicating in other ways or how they are using those 20 words. To address these concerns, we developed the Low Verbal Investigatory Survey (LVIS), a one-page parent-report measure designed to help us characterize how minimally verbal autistic children are communicating. Parents of 147 children (aged 1–8 years) completed the LVIS. Here, we ask (1) whether the survey measures what it was designed to measure, that is, communicative ability in children without much spoken language, and (2) how the LVIS relates to cognitive and language ability, and symptoms of autism. Results suggest that this survey, which takes only 5 min to complete, is a good estimate of the child’s communication skills. Furthermore, LVIS survey scores are correlated with other measures of language and cognitive abilities as well as autism symptomatology. The LVIS has the potential to save time and money in both clinical and research efforts to assess communication skills in minimally verbal autistic children.
      Citation: Autism
      PubDate: 2022-11-14T12:12:53Z
      DOI: 10.1177/13623613221136657
       
  • Autism spectrum disorder among 16- to 30-month-old children in Bangladesh:
           Observational cross-sectional study

    • Free pre-print version: Loading...

      Authors: Shaheen Akhter, Jannatara Shefa, Mohammad Abdul Quader, Khurshid Talukder, AHM Enayet Hussain, Gopen Kumar Kundu, Kanij Fatema, Sayeda Tabassum Alam, Kazi Ashraful Islam, Md Sayedur Rahman, Mohammad Mizanur Rahman, Ziaul Hasan, Muzharul Mannan
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder is a developmental disorder that includes deficits in social communication and interaction, and restricted and repetitive behaviours, interests, or activities. This survey was done to assess autism spectrum disorder prevalence in 16- to 30-month-old children at an urban–rural distribution and determine the association of socioeconomic and demographic conditions. An observational cross-sectional study was conducted in 30 districts of Bangladesh. Three-stage cluster sampling was used with ‘Red Flag’, Modified Checklist for Toddlers and Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, respectively. Data editing and analysis were done using CSPro 6 and SPSS 23. The survey included 37,982 households (71% rural, 29% urban) with 38,440 children. ‘Red Flag’ was positive in 209/10,000 children. Modified Checklist for Toddlers was positive in 149/10,000 children. Diagnostic and Statistical Manual of Mental Disorders, 5th Edition–positive autism spectrum disorder prevalence was 17/10,000 young children (boys 24/10,000, girls 9.8/10,000). Prevalence was higher in urban than rural (25/10,000 and 14/10,000 respectively). It was 77/10,000 in mothers aged 35–39 years and 23/10,000 in children of fathers aged 40 years. For families within the lowest wealth quintile, the autism spectrum disorder prevalence was 15/10,000. Autism spectrum disorder at very young ages in Bangladesh is still low. It was higher in urban areas, with the advanced age of parents, especially mothers, and in families with higher wealth quintiles.Lay abstractA nationwide survey was done in Bangladesh to assess autism spectrum disorder prevalence in 16- to 30-month-old children at urban–rural distribution and to determine the association with socioeconomic and demographic conditions. A three-stage cluster sampling method was used where districts from all divisions were selected in the first stage, census enumeration areas as blocks of households were selected in the second stage and households (within the blocks) were selected in the third stage. Thereby, it included 38,440 children from 37,982 households (71% rural, 29% urban) aged 16–30 months from 30 districts of eight divisions of Bangladesh. Screening was done with a ‘Red Flag’ tool and Modified Checklist for Toddlers and a final diagnosis using Diagnostic and Statistical Manual of Mental Disorders, 5th Edition for autism spectrum disorder. Autism spectrum disorder prevalence was 17 per 10,000 young children – in other words, one in 589 young children. Boys were found at higher risk of autism (one in 423 boys; one in 1026 girls). Prevalence of autism spectrum disorder was higher in urban environments than in rural ones – 25/10,000 and 14/10,000, respectively. More autism spectrum disorder children were found in advanced age groups of parents, especially mothers, and in households with a higher wealth quintile. This survey is significant as it covers both urban and rural areas and specifically targets very young children. The involvement of the Bangladesh Bureau of Statistics, as well as support from the entire healthcare system infrastructure, makes this survey more representative on a national level. Its results will form a database to support the development of an effective early intervention programme in Bangladesh. We hope it will prove useful for researchers, clinicians and frontline healthcare workers, and inform the decisions of policymakers and funders in Bangladesh.
      Citation: Autism
      PubDate: 2022-11-14T11:22:49Z
      DOI: 10.1177/13623613221135297
       
  • Looking through rainbow-rimmed glasses: Taking neurodiversity perspective
           is related to subjective well-being of autistic adults

    • Free pre-print version: Loading...

      Authors: Kinga Ferenc, Mateusz Płatos, Katarzyna Byrka, Magdalena Ewa Król
      Abstract: Autism, Ahead of Print.
      Finding new ways of supporting the well-being of autistic adults is an essential goal for research and practice. We tested the predictive value of attitudes towards autism (as neurodiversity or as a disorder) and identification with other autistic people, on the psychological distress and self-esteem of autistic adults (n = 109). Adopting a neurodiversity attitude not only predicted higher self-esteem but also served as a protective factor against the negative impact of identification with other autistic people on psychological distress. These findings show that clinicians should be sensitive to the way autistic people understand autism and the extent to which they identify with the autism community, as these factors relate to their well-being.Lay abstractAutistic adults experience a high level of distress. Finding new ways to support their well-being is an important goal for researchers and clinicians. We assessed the way autistic adults view their autism, as a disorder or as a type of mind (neurodiversity), and the level they integrate with other autistic people, and we checked how those factors contribute to their well-being. People who see autism rather as a type of mind than as a disorder had higher self-esteem. People who view themselves as more similar to other autistic people felt more stressed, but this result was not accurate for people who view autism as a type of mind. Clinicians should be sensitive to the way autistic people understand autism and to what extent they identify with the autism community, because it may relate to their well-being.
      Citation: Autism
      PubDate: 2022-11-14T08:32:39Z
      DOI: 10.1177/13623613221135818
       
  • Supporting caregivers of children with developmental disabilities:
           Findings from a brief caregiver well-being programme in South Africa

    • Free pre-print version: Loading...

      Authors: Liezl Schlebusch, Nola Chambers, David Rosenstein, Petro Erasmus, Petrus J de Vries
      Abstract: Autism, Ahead of Print.
      Caring for children with developmental delays or disabilities places significant stress on caregivers, which is often exacerbated in low-resource settings. The World Health Organization developed a caregiver skills training for families of children with developmental delays or disabilities, which includes a three-session caregiver well-being module based on Acceptance and Commitment Therapy, that aims to help caregivers build psychological flexibility (i.e. the ability to focus on the present moment, make space for difficult thoughts and emotions and commit to value-driven actions that enrich their lives). We investigated whether this brief caregiver well-being programme was feasible, acceptable and contributed to positive outcomes for caregivers in a rural South African town. We adapted the intervention to the local context using a participatory approach. The ‘Well-Beans for Caregivers’ adaptation of the World Health Organization Caregiver Skills Training Caregiver Wellbeing module was then delivered by trained facilitators to a group of 10 caregivers in three weekly, 2-h sessions. Most caregivers were single and unemployed. Feedback from the facilitators, caregivers and trainee observers was obtained before, during and after the programme. Results suggested that this brief programme shows promise as a feasible and acceptable intervention, which may lead to improved caregiver well-being and mental health in communities in South Africa.Lay abstractYoung children with developmental disabilities and delays who live in low- and middle-income countries are at significant risk of not reaching their full potential. We know that daily interactions with their caregivers (parents or other people taking care of them) play an important role in promoting their development. However, having a child with developmental disabilities can have a negative impact on carers’ mental health and well-being, which in turn can influence their capacity to care for their children. To date, very little attention has been given to the caregivers’ capacity to care. The World Health Organization developed a Caregiver Skills Training programme which includes a brief, three-session module that focuses on improving caregivers’ well-being and mental health. This well-being programme is based on acceptance and commitment therapy. Acceptance and commitment therapy shows increasing evidence of helping people respond to their stressors, thoughts, feelings and experiences a little differently and commit to small changes that are in line with their personal values. Acceptance and commitment therapy has shown promise in improving feelings of well-being in caregivers of children with developmental disabilities. We adapted the World Health Organization Caregiver Skills Training Caregiver well-being module to suit the South African context. The resultant ‘Well Beans for Caregivers’ was then delivered to caregivers from a rural, low-resource setting in South Africa. We found the intervention easy to implement, highly acceptable to caregivers and showed promising impacts on caregivers’ well-being and mental health. This intervention has the potential to be implemented widely and sustainably to build caregivers’ capacity to care for their children.
      Citation: Autism
      PubDate: 2022-11-10T06:12:48Z
      DOI: 10.1177/13623613221133182
       
  • Perspective: The role of diversity advisory boards in autism research

    • Free pre-print version: Loading...

      Authors: Ed-Dee G Williams, Matthew J Smith, Brian Boyd
      Abstract: Autism, Ahead of Print.
      In this perspective, we argue that the regular use of diversity advisory boards in autism research will improve the inclusivity and participation of marginalized groups in autism research and intervention development. We define a diversity advisory board as a representative group of community members, scholars, policymakers, and area experts that specifically discuss and examine research and interventions for accurate representation and consideration of underrepresented and marginalized identities such as racial, gender, sexual minorities, and dis/abilities who are often excluded from the research process. We present three arguments for forming and integrating diversity advisory boards in autism research and intervention development. First, diversity advisory boards would encourage scholars and interventionists to be intentional in considering how their intervention will work for culturally, racially, gendered, and dis/ability diverse groups. Second, diversity advisory boards will lead to increased diverse samples of autistic participants if members of the board are incentivized to support recruitment efforts from their local communities and networks. Finally, the regular use of diversity advisory boards will improve the research-to-practice gap by including a wider range of community members in the early development and implementation of autism interventions. Recommended actions researchers could take to select, maintain, and meaningfully engage a diversity advisory board are included in this perspective.Lay abstractThis article argues that using groups of individuals that specifically focus on addressing issues with diversity in autism research and autism intervention development are key in ensuring that a greater amount of racial, ethnic, and gender diverse autistic individuals are included in the research and that the research is addressing the needs of these individuals and groups. We call these groups a diversity advisory board. A diversity advisory board will help improve diversity in autism research and intervention development by making sure that autism researchers (1) are intentional about addressing issues of diversity in their research and (2) are able to recruit a greater number of autistic individuals with diverse identities, and (3) by giving greater consideration to the context of diverse autistic individuals which will help autism-focused interventions work better in community settings. We give a short description of these arguments and ideas for how to form and use a diversity advisory board.
      Citation: Autism
      PubDate: 2022-11-07T08:13:19Z
      DOI: 10.1177/13623613221133633
       
  • Digital tools for direct assessment of autism risk during early childhood:
           A systematic review

    • Free pre-print version: Loading...

      Authors: Debarati Mukherjee, Supriya Bhavnani, Georgia Lockwood Estrin, Vaisnavi Rao, Jayashree Dasgupta, Hiba Irfan, Bhismadev Chakrabarti, Vikram Patel, Matthew K Belmonte
      Abstract: Autism, Ahead of Print.
      Current challenges in early identification of autism spectrum disorder lead to significant delays in starting interventions, thereby compromising outcomes. Digital tools can potentially address this barrier as they are accessible, can measure autism-relevant phenotypes and can be administered in children’s natural environments by non-specialists. The purpose of this systematic review is to identify and characterise potentially scalable digital tools for direct assessment of autism spectrum disorder risk in early childhood. In total, 51,953 titles, 6884 abstracts and 567 full-text articles from four databases were screened using predefined criteria. Of these, 38 met inclusion criteria. Tasks are presented on both portable and non-portable technologies, typically by researchers in laboratory or clinic settings. Gamified tasks, virtual-reality platforms and automated analysis of video or audio recordings of children’s behaviours and speech are used to assess autism spectrum disorder risk. Tasks tapping social communication/interaction and motor domains most reliably discriminate between autism spectrum disorder and typically developing groups. Digital tools employing objective data collection and analysis methods hold immense potential for early identification of autism spectrum disorder risk. Next steps should be to further validate these tools, evaluate their generalisability outside laboratory or clinic settings, and standardise derived measures across tasks. Furthermore, stakeholders from underserved communities should be involved in the research and development process.Lay abstractThe challenge of finding autistic children, and finding them early enough to make a difference for them and their families, becomes all the greater in parts of the world where human and material resources are in short supply. Poverty of resources delays interventions, translating into a poverty of outcomes. Digital tools carry potential to lessen this delay because they can be administered by non-specialists in children’s homes, schools or other everyday environments, they can measure a wide range of autistic behaviours objectively and they can automate analysis without requiring an expert in computers or statistics. This literature review aimed to identify and describe digital tools for screening children who may be at risk for autism. These tools are predominantly at the ‘proof-of-concept’ stage. Both portable (laptops, mobile phones, smart toys) and fixed (desktop computers, virtual-reality platforms) technologies are used to present computerised games, or to record children’s behaviours or speech. Computerised analysis of children’s interactions with these technologies differentiates children with and without autism, with promising results. Tasks assessing social responses and hand and body movements are the most reliable in distinguishing autistic from typically developing children. Such digital tools hold immense potential for early identification of autism spectrum disorder risk at a large scale. Next steps should be to further validate these tools and to evaluate their applicability in a variety of settings. Crucially, stakeholders from underserved communities globally must be involved in this research, lest it fail to capture the issues that these stakeholders are facing.
      Citation: Autism
      PubDate: 2022-11-07T08:10:19Z
      DOI: 10.1177/13623613221133176
       
  • The indirect effect of self-compassion in the association between autistic
           traits and anxiety/depression: A cross-sectional study in autistic and
           non-autistic adults

    • Free pre-print version: Loading...

      Authors: John Galvin, Gareth Richards
      Abstract: Autism, Ahead of Print.
      This study followed a pre-registered analysis plan with the aim to investigate whether autistic traits and self-compassion are correlated in autistic adults, and to test an indirect effect of autistic traits on anxiety/depression via self-compassion. We present the findings of an online survey of 456 participants (n = 228 autistic adults, n = 228 non-autistic adults) who completed the Autism Spectrum Quotient (AQ), the Self-Compassion Scale (SCS) and the Hospital Anxiety and Depression Scale (HADS). Lower self-compassion was reported by autistic participants compared to non-autistic participants, and a negative correlation was found between autistic traits and self-compassion in both groups. Furthermore, an indirect association between autistic traits and anxiety/depression via self-compassion was observed in both samples. Considering that many autistic people experience co-occurring anxiety and depression, and that self-compassion is a skill that can be cultivated with practice, the findings of this study suggest that self-compassion may be a modifiable factor that could improve the mental health of this population.Lay abstractPrevious research on non-autistic adults suggests self-compassion may serve to reduce mental health problems and promote psychological well-being. Correlations between autistic traits and self-compassion have been observed in non-clinical populations. In this study, we were interested in extending previous research by exploring relationships between autistic traits, self-compassion and anxiety/depression in autistic adults without intellectual disability. The findings revealed that on average autistic people reported lower self-compassion than non-autistic people. Once we accounted for levels of self-compassion in our statistical model, this resulted in a complete loss of statistical significance in the relationships between autistic traits and anxiety/depression. Self-compassion may be a useful target for clinical intervention in autistic adults with co-occurring mental health difficulties.
      Citation: Autism
      PubDate: 2022-11-07T07:30:25Z
      DOI: 10.1177/13623613221132109
       
  • Autism-friendly public bus transport: A personal experience–based
           perspective

    • Free pre-print version: Loading...

      Authors: Hélène Dirix, Veerle Ross, Kris Brijs, Laura Bertels, Wael Alhajyaseen, Tom Brijs, Geert Wets, Annemie Spooren
      Abstract: Autism, Ahead of Print.
      Community participation and the formation of social networks are crucial for a qualitative life. To this end, transportation plays an essential role. Many autistic people rely on public transportation for their mobility needs. However, research shows that it is not always easy for them to use it. The issues they face when using public bus transport have not yet been thoroughly studied. The current case study in Flanders aimed to give autistic people the opportunity to express the issues they face while using public bus transportation. A qualitative hermeneutic phenomenological study was carried out. Semistructured interviews were conducted with 17 autistic individuals. The interviews were analyzed based on the interpretative phenomenological analysis method. Three main themes emerged: creating predictability, limiting stimuli, and open and accessible communication. In addition, various coping strategies were described, such as the use of noise-canceling headphones. The results of this study may lead to a more autism-friendly public transportation environment.Lay AbstractTransportation plays an essential role in daily life, allowing people to participate in the community and form social relationships. Many autistic people rely on public transportation to meet their mobility needs. However, research shows that it is not always easy for them to use it. The exact issues autistic individuals face when traveling with public transportation and how public transportation can be made more autism-friendly have yet to be researched. The current study allowed autistic individuals to express themselves regarding issues they face while traveling by public bus transportation, to raise awareness for making public transportation more autism-friendly. We interviewed 17 autistic individuals about their experiences riding the bus. Three main themes emerged from the results: creating predictability, limiting stimuli, and open and accessible communication. If transport companies take initiatives related to these themes, autistic people traveling by bus can have a more pleasant experience. Participants also described coping strategies for stressful or uncomfortable situations while using public bus transportation, such as using noise-cancelling headphones or digital applications for real-time route tracking, etc. These findings may lead to a more autism-friendly public transportation.
      Citation: Autism
      PubDate: 2022-11-07T07:27:07Z
      DOI: 10.1177/13623613221132106
       
  • A more holistic approach to autism using the International Classification
           of Functioning: The why, what, and how of functioning

    • Free pre-print version: Loading...

      Authors: Sven Bölte
      Abstract: Autism, Ahead of Print.

      Citation: Autism
      PubDate: 2022-11-04T08:55:57Z
      DOI: 10.1177/13623613221136444
       
  • Socioeconomic factors and autism among 16- to 30-month-old children:
           Evidence from a national survey of China

    • Free pre-print version: Loading...

      Authors: Muqing Cao, Li Li, Hein Raat, Amy Van Grieken, Xin Wang, Lizi Lin, Qiang Chen, Jin Jing
      Abstract: Autism, Ahead of Print.
      We examined the association of socioeconomic status with the diagnosis of autism during 16–30 months of age. Using data from a national survey in China, we included 6049 children (55.6% male) in the final analysis, among which 71 of them were clinically diagnosed with autism. Adjusted for covariates, the odds ratios for having the diagnosis of autism (2.46, 95% confidence interval: [1.32, 4.59]) among children whose mother’s level is “junior middle school or below” were significantly higher than children whose mother’s level is “college or above.” Among children of lower educated mothers, there is a higher risk of being diagnosed with autism at a young age. We recommend more support for families with a low socioeconomic status to early detect, diagnose, and manage autism.Lay abstractDoes being born in a family of high socioeconomic status mean a higher risk of being diagnosed with autism' The evidence from the Asian area is lacking. This research was conducted among 6049 toddlers who went through an evaluation–diagnose procedure of autism and whose parents were surveyed during the national survey of China, 2016–2017. Parents reported their education levels, occupations, family income, and ethnic background. We recruited the toddlers and parents from kindergartens, communities, and hospitals in five geographically representative areas of China. On average, these toddlers were 23 months of age. We found toddlers whose mothers had less than 9 years of education (junior middle school or below) had 2.46 times the chance to get a diagnosis of autism, compared with toddlers whose mothers had more than 15 years of education (college or above). We also found that 1.17 toddlers could be diagnosed with autism in each 100 Chinese toddlers. These findings have important implications for providing support to families that have low socioeconomic status, especially families with a mother who did not complete 9 years of education. Early detection programs focused on children from low socioeconomic backgrounds should be promoted.
      Citation: Autism
      PubDate: 2022-11-04T08:51:17Z
      DOI: 10.1177/13623613221132743
       
  • Autism voices: Perspectives of the needs, challenges, and hopes for the
           future of autistic youth

    • Free pre-print version: Loading...

      Authors: Rackeb Tesfaye, Valerie Courchesne, Pat Mirenda, Wendy Mitchell, David Nicholas, Ilina Singh, Lonnie Zwaigenbaum, Mayada Elsabbagh
      Abstract: Autism, Ahead of Print.
      The Autism Voices study draws on novel inclusive methods to obtain the first-person experiences of autistic youth with a range of cognitive and verbal abilities. Thirty-one autistic youth were interviewed with a strength-based protocol, enabling them to provide responses in the modality of their choice. Dynamics between youth and their environments such as home, school, and community were explored. Youth were questioned about their interests, plans for the future, experiences with various emotions, and experience of autism. Based on a thematic analysis, six themes emerged: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. The experiences described by autistic youth parallel many of the aspirations and challenges of typically developing adolescents, while being uniquely shaped by their autism. We discuss how these insights shared by autistic youth can facilitate active involvement in their communities, promote well-being, and promote optimal transition into adulthood. Autism Voices demonstrates that partnering with multiple stakeholders and the use of inclusive methodologies are pivotal steps toward capturing the voices of all autistic youth.Lay abstractCurrently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11–18 years highlighted six themes: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them.
      Citation: Autism
      PubDate: 2022-11-04T05:56:34Z
      DOI: 10.1177/13623613221132108
       
  • Thinking, fast and slow on the autism spectrum

    • Free pre-print version: Loading...

      Authors: Mark Brosnan, Chris Ashwin
      Abstract: Autism, Ahead of Print.
      The Dual Process Theory of Autism proposes that autistic individuals demonstrate greater deliberative (slower) processing alongside reduced (faster) intuitive processing. This study manipulated the reasoning time available to investigate the extent to which deliberative and intuitive processing are sensitive to time context in autism. A total of 74 young autistic people and 132 control participants completed the Cognitive Reflection Test to measure intuition and deliberation, with responses being either speeded (fast condition) or delayed (slow condition). The autistic group produced more deliberative and less intuitive responses than controls overall. Both groups showed more intuitive responses in the fast condition and more deliberative responses in the slow condition, demonstrating the reasoning style in autism is sensitive to context.Lay abstractWhat is already known about the topicDaniel Kahneman wrote a highly influential book titled ‘thinking, fast and slow’. He proposes that people usually think in a rapid, automatic, intuitive style. When people realise their intuitive thinking may be wrong, a slower, effortful, deliberative style of thinking takes over. It has recently been proposed that thinking in autistic individuals can be characterised as usually thinking in the deliberative style (rather than the intuitive style that non-autistic people usually think in).What this paper addsAs intuitive thinking is fast and deliberative thinking is slow, this research manipulated the time available to complete a series of reasoning questions. These questions have been developed to have intuitive answers (which are incorrect) and deliberative answers (which are correct). For the first time, a fast time manipulation (you must answer quickly) and slow (you must think about your answer before responding) was undertaken with autistic individuals. Autistic participants did produce more deliberative answers than the non-autistic participants. However, both groups produced comparably more intuitive answers and less deliberative answers in the fast condition. This shows that while autistic people tend not to use their intuition, autistic people can be encouraged to use their intuition.Implications for practice, research or policyUsing rapid intuition can be useful in fast-changing contexts, such as some social situations. Future research can explore how to support autistic individuals to use their intuition when the need arises. In addition, the propensity for deliberation resulting in unbiased, correct responses reflects a strengths-based account of autism. This requires more mental effort and is less susceptible to bias and errors. This is called ‘Dual Process Theory’.
      Citation: Autism
      PubDate: 2022-11-03T07:30:16Z
      DOI: 10.1177/13623613221132437
       
  • A qualitative exploration of autistic mothers’ experiences I:
           Pregnancy experiences

    • Free pre-print version: Loading...

      Authors: Sarah Hampton, Joyce Man, Carrie Allison, Ezra Aydin, Simon Baron-Cohen, Rosemary Holt
      Abstract: Autism, Ahead of Print.
      Pregnancy may pose a number of physical and healthcare-related challenges for autistic people, who experience differences in sensory processing and can face barriers to accessing healthcare. However, little research has explored autistic pregnancy experiences. Semi-structured interviews were conducted with 24 autistic and 21 non-autistic women during the third trimester of pregnancy. Thematic analysis revealed that the autistic group experienced heightened sensory and physical symptoms during pregnancy compared with the non-autistic group. Autistic participants were sometimes reluctant to disclose their diagnosis to healthcare professionals and felt that professionals lacked autism knowledge. While both groups appreciated clear information about their care, autistic participants further highlighted the need for detailed information and being given time to process verbal information. The autistic group also highlighted the need for sensory adjustments in healthcare settings. The findings indicate ways in which prenatal healthcare can be improved for autistic people, including sensory and communication adjustments. There is a need for greater autism-related training for prenatal healthcare professionals to ensure that autistic people receive appropriate support.Lay abstractLittle is known about how autistic people experience pregnancy. We interviewed 24 autistic and 21 non-autistic women during pregnancy to find out about their experiences. Autistic participants had more physical difficulties, such as nausea and pain, during pregnancy than non-autistic participants. They also sometimes felt that healthcare professionals, such as midwives, did not have a good understanding of autism and they did not always feel comfortable telling professionals about their autism diagnosis. Autistic participants told us that they needed professionals to communicate with them clearly and to make changes during appointments such as dimming lights. This research shows that autistic people would benefit from changes to pregnancy appointments and that more training about autism would help maternity care professionals to support autistic people during pregnancy.
      Citation: Autism
      PubDate: 2022-11-03T07:26:39Z
      DOI: 10.1177/13623613221132435
       
  • “Giving the patients less work”: A thematic analysis of telehealth use
           and recommendations to improve usability for autistic adults

    • Free pre-print version: Loading...

      Authors: Daniel Gilmore, Lauren Harris, Christopher Hanks, Daniel Coury, Susan Moffatt-Bruce, Jennifer H Garvin, Brittany N Hand
      Abstract: Autism, Ahead of Print.
      Virtual visits are a telehealth service where patients and providers communicate in real-time using audio and/or video technology. Setting up a virtual visit is complex and may pose challenges for some autistic adults. We conducted semi-structured interviews with autistic adults (n = 7), family members of autistic adults (n = 12), and clinic personnel (n = 6) from one US-based clinic and used thematic analysis to identify factors affecting usability of virtual visits. We found virtual visit preparation involves multiple contacts between clinic personnel and patients or family members via a variety of channels and usability was affected by technology considerations, logistical considerations, and expectations for visits. Participants said technological experience and using the patient portal enhanced usability, but technological issues could increase anxiety. Clinic personnel reported time constraints created logistical barriers to virtual visits; streamlining the process before the visit via the patient portal may improve the usability of virtual visits for autistic adults, family members, and clinic personnel. Participants also reported unclear expectations for virtual visits reduced usability and recommended reminders, instructional videos, and estimated wait-times to clarify expectations. While our findings are based on a single clinic, they may help inform usability improvement efforts in other clinics offering virtual visits for autistic adults.Lay abstractReal-time telehealth visits, called “virtual visits,” are live video chats between patients and healthcare professionals. There are lots of steps involved in setting up a virtual visit, which may be difficult for some autistic adults. We interviewed 7 autistic adults, 12 family members of autistic adults, and 6 clinic staff from one clinic in the United States. Our goal was to understand their experiences with virtual visits and see how we can make virtual visits easier to use. We re-read text from the interviews to organize experiences and advice that was shared into topics. We found that autistic adults (or their family members) had to connect with clinic staff many times by phone or online over several days to set up a virtual visit. Participants said that having more experience with technology and using the online patient portal made virtual visits easier to use. But, having issues with technology before the visit could make autistic adults and family members anxious. Clinic staff said it was hard for them to meet the needs of people who were using virtual visits and those who were being seen in person at the clinic. Participants recommended reducing the number of calls between staff and autistic adults or family members using the online patient portal instead. Participants also recommended reminder messages, instruction videos, and approximate wait-times to help autistic adults and family members know what to expect for the virtual visit. Our results are based on peoples’ experiences at one clinic, but could help other clinics make virtual visits easier to use for autistic adults and their family members.
      Citation: Autism
      PubDate: 2022-11-03T07:23:39Z
      DOI: 10.1177/13623613221132422
       
  • A systematic review examining caregivers’ of color experiences with the
           diagnostic process of autism spectrum disorder

    • Free pre-print version: Loading...

      Authors: Allison P Fisher, James D Lynch, Farrah M Jacquez, Monica J Mitchell, Kelly I Kamimura-Nishimura, Shari L Wade
      Abstract: Autism, Ahead of Print.
      There are racial/ethnic disparities in the diagnosis of autism spectrum disorder, including delayed diagnosis, discrimination, and a lack of culturally responsive care. The perspectives of caregivers of color are critical in improving delivery of equitable care. We systematically reviewed articles pertaining to experiences with the diagnostic process among caregivers of color. We entered key terms into five databases to identify literature from 2000 to 2021. Fifteen qualitative studies met inclusion criteria, representing 253 caregivers. We used inductive methods to examine themes across racial and ethnic groups and assessed the quality of included studies. Families of color identified multiple factors that negatively affected the diagnostic process. Systems-level factors included long wait lists and financial concerns. Provider-level factors included minimization of caregiver concerns, a “wait and see” approach, biases, and lack of knowledge. Caregivers also described individual (e.g. knowledge) and family factors (e.g. stigma) that delayed diagnosis and complicated the diagnostic process. Communication barriers were commonly reported, which impeded understanding of autism spectrum disorder. Some families described providers, other individuals, community networks, and self-advocacy as facilitators. Interventions targeting systems- (e.g. Medicaid expansion) and provider-level (e.g. increase training in autism spectrum disorder) factors are needed to increase equity in the autism spectrum disorder diagnostic process.Lay abstractChildren of color are diagnosed with autism later than White children. Caregivers of color are also more likely than White caregivers to report that their child’s healthcare providers do not treat them as a partner, spend enough time with them, or respect their culture and values. We wanted to better understand the experiences of caregivers of color with the diagnostic process of autism spectrum disorder, from the time they discuss developmental concerns with their child’s primary care provider to when the diagnosis is shared with them. We systematically reviewed the literature and found 15 articles that explored the experiences of caregivers of color. Caregivers of color described that they faced large-scale barriers, such as the cost of appointments, transportation, and long wait lists. They also reported negative experiences with providers, including providers not taking their concerns seriously, making assumptions about caregivers, and delaying referrals for an evaluation. Caregivers stated that their own lack of knowledge of autism spectrum disorder, stigma, their family’s thoughts and opinions, and cultural differences between providers and caregivers served as barriers during the diagnostic process. Communication challenges were discussed and included use of medical and technical jargon, a lack of follow-up, language barriers, and difficulty obtaining high-quality interpreters. Some families described providers, other individuals, community networks, and self-advocacy as helpful during the diagnostic process. Large-scale changes are needed, such as increases in the number of providers who are trained in diagnosing Autism. Provider-level changes (e.g. implicit bias training) are also important for improving caregivers’ experiences.
      Citation: Autism
      PubDate: 2022-11-02T08:09:06Z
      DOI: 10.1177/13623613221128171
       
  • A preliminary exploration of different coping strategies used by Korean
           immigrant parents of autistic children in high versus low family quality
           of life ratings

    • Free pre-print version: Loading...

      Authors: Vanessa C. Fong, Jennifer Shim, Andy Yoon, Bo Sang Lee, Grace Iarocci
      Abstract: Autism, Ahead of Print.
      The experiences of coping in parents of autistic children have been extensively studied in the literature. While this research has identified both effective and ineffective coping strategies used by caregivers, no studies to date have examined how coping strategies used by parents might be linked to family quality of life outcomes. Furthermore, few studies exist examining both coping strategies and family quality of life in culturally and linguistically diverse populations. Thus, this study aimed to address both limitations. A total of 12 Korean immigrant parents of autistic children, 6 representing the high family quality of life group and 6 representing the low family quality of life group, shared their experiences related to coping and managing stress. Responses fell under three broad categories (problem-focused, emotion-focused, and adjustment-focused) with differences observed when comparing the high versus low family quality of life groups. A better understanding of the link between coping strategies and family quality of life outcomes may help identify effective and culturally sensitive supports for caregivers and families to improve their quality of life and well-being.Lay abstractThe experiences of coping in parents of autistic children have been extensively studied in the literature. While this research has identified both effective and ineffective coping strategies used by caregivers, no studies to date have examined how coping strategies used by parents might be linked to family quality of life outcomes. Furthermore, few studies exist examining both coping strategies and family quality of life in culturally and linguistically diverse populations. Thus, this study aimed to address both limitations. A total of 12 Korean immigrant parents of autistic children, 6 representing the high family quality of life group and 6 representing the low family quality of life group, shared their experiences related to coping and managing stress. Responses fell under three broad categories (problem-focused, emotion-focused, and adjustment-focused) with differences observed when comparing the high versus low family quality of life groups. A better understanding of the link between coping strategies and family quality of life outcomes may help identify effective and culturally sensitive supports for caregivers and families to improve their quality of life and well-being.
      Citation: Autism
      PubDate: 2022-11-01T07:23:11Z
      DOI: 10.1177/13623613221133961
       
  • Overcoming tensions between family-centered care and fidelity within Early
           Intervention implementation research

    • Free pre-print version: Loading...

      Authors: Katherine Pickard, Allison Wainer, Sarabeth Broder-Fingert, R. Christopher Sheldrick, Aubyn C. Stahmer
      Abstract: Autism, Ahead of Print.
      The Part C Early Intervention system has been a focus of translational efforts in the autism field, as it is an entry point to services during a critical window of early development. Although Early Intervention systems are perceived as a promising setting in which to implement evidence-based practices for autism, implementation efforts seldom account for the unique service delivery model of Early Intervention systems, which emphasize family-centered care. The principles of family-centered care may at times pose tradeoffs to the implementation of manualized evidence-based practices and, thus, are pertinent to consider within implementation research being conducted within these systems. This commentary highlights family-centered care as an important factor of service delivery in Early Intervention systems that deserve greater attention. We lay out how family-centered care provides a framework for evaluating evidence-based practice adaptation in Early Intervention systems, how it may impact the adoption and implementation of evidence-based practices, and directions for future research to evaluate the impact of family-centered care alongside evidence-based practice delivery. Measuring family-centered care as part of research within Early Intervention systems may shift the autism field to a more balanced view of fidelity as both delivering core evidence-based practice components in a manner that closely align with fundamental tenants of Early Intervention systems.Lay AbstractEarly Intervention systems provide therapeutic services to families of young children birth to 3 years with developmental delays and are considered a natural access point to services for young children and their families. Research studies in the autism field have been interested in training providers to deliver evidence-based practices in Early Intervention systems to increase access to services for young children with an increased likelihood of being autistic. However, research has often overlooked that Early Intervention systems prioritize family-centered care, an approach to working with families that honors and respects their values and choices and that provides supports to strengthen family functioning. This commentary points out that family-centered care deserves greater attention in research being done in Early Intervention systems. We describe how family-centered care may shape how interventions are delivered, and discuss directions for future research to evaluate the impact of family-centered care alongside intervention delivery.
      Citation: Autism
      PubDate: 2022-11-01T07:20:30Z
      DOI: 10.1177/13623613221133641
       
  • Portrayals of autism in the British press: A corpus-based study

    • Free pre-print version: Loading...

      Authors: Themis Karaminis, Costas Gabrielatos, Ursula Maden-Weinberger, Geoffrey Beattie
      Abstract: Autism, Ahead of Print.
      Press representations of autism and autistic people both reflect and help shape public attitudes towards autism and neurodiversity and may establish critical barriers to social integration for autistic individuals. This study examined such representations in UK newspapers in the period 2011–2020 using a corpus-based approach. It also considered how press representations changed over time and differed with regard to reporting style (tabloids vs broadsheets) and political orientation (left- vs right-leaning). We created the Autism UK Press Corpus, which included all documents (~24K) referring to autism in 10 national newspapers. We used document counts (normalised by newspaper size) to assess the ‘newsworthiness’ of autism. We also employed a synergy of corpus-based and critical-discourse-analysis methodologies to study lexicogrammatical patterns and uncover explicit and implicit attitudes towards autism. Our results showed that the coverage of autism increased slightly over time, especially in broadsheets and left-leaning newspapers. Newspapers emphasised adversities associated with autism, often used negative language, and tended to focus on boys. These representations shifted gradually towards more difference-based descriptions and included more diverse age/gender groups, especially in broadsheets and left-leaning newspapers. We discuss the broad implications of these findings for the autism community and those interested in a more inclusive society.Lay abstractAny thriving society must recognise, accept and celebrate all of its diverse talent. But how accepting is British society towards autism and autistic people' This research addressed this question through the lens of the press since the press both reflects and helps shape public attitudes towards various social categories. We used specialised ‘corpus-based’ methods to carry out a large-scale study, which examined all articles referring to autism or autistic people in 10 national British newspapers in the period 2011–2020. We first investigated how often newspapers referred to autism. We found that the coverage of autism increased slightly over the years, suggesting that autism was becoming an increasingly newsworthy topic. Furthermore, the rise in autism coverage differed considerably between individual newspapers: it was more pronounced in the broadsheets than tabloids, and in left-leaning than right-leaning newspapers. But what was the focus of these articles' We found that newspapers emphasised the adversities associated with autism and portrayed autism with a lot of negative language. Newspapers also tended to focus on autistic children, and particularly on boys. There were some signs of change in more recent years, with some newspapers now representing autism as a difference and, in addition, referring to more diverse groups of autistic people. However, these changes tended to be confined to broadsheets and left-leaning newspapers. Our findings suggest that representations of autism in the contemporary British press are skewed towards stereotypically negative views, which may well hinder the acceptance of autism and the fostering of a more inclusive society.
      Citation: Autism
      PubDate: 2022-11-01T07:14:50Z
      DOI: 10.1177/13623613221131752
       
  • Using implementation science frameworks to explore barriers and
           facilitators for parents’ use of therapeutic strategies following a
           parent-mediated autism intervention

    • Free pre-print version: Loading...

      Authors: Sophie Carruthers, Natasha Mleczko, Stephanie Page, Shalini Ahuja, Ceri Ellis, Patricia Howlin, Kathy Leadbitter, Lauren Taylor, Vicky Slonims, Tony Charman
      Abstract: Autism, Ahead of Print.
      One core component of the Paediatric Autism Communication Therapy–Generalised involves supporting parents to change their interaction and communication style with their child. This behaviour change has been found to affect child outcomes. Implementation science methodologies offer a range of opportunities to investigate how interventions are delivered in practice; however, few autism intervention studies have used such designs to explore the behaviour change of parents. We interviewed 27 parents and explored their use of intervention strategies after the Paediatric Autism Communication Therapy–Generalised trial. We employed the Theoretical Domains Framework and Consolidated Framework for Implementation Research to systematically explore a range of barriers and facilitators experienced by the parents associated with parents’ characteristics, their context and features of the intervention. Our analysis revealed barriers and facilitators across three themes: Motivating Factors, which was further subdivided into Compatibility and Buy-In and Alignment of Goals and Outcomes; Opportunity and Support; Parent Characteristics. Almost all parents reported continued use of the Paediatric Autism Communication Therapy–Generalised strategies. Facilitators (e.g. parental confidence in using the strategies) and barriers (e.g. child’s behaviour) were identified. Consideration of these factors can inform identification of implementation strategies to test in future studies of Paediatric Autism Communication Therapy–Generalised and other parent-mediated early autism interventions.Lay abstractMany early autism interventions teach parents therapeutic strategies to help them adjust their communication style with their children. Research has shown that this behaviour change in parents leads to improvements in child communication. It is, therefore, important to learn what factors support or hinder parents in their use of therapeutic strategies learned in such interventions. This study set out to interview parents who had participated in a research trial of the Paediatric Autism Communication Therapy–Generalised intervention. We interviewed 27 caregivers and explored their use of the strategies up to 2 years after the end of the research trial. Qualitative frameworks were used to inform interview questions and data analysis. These frameworks focused on a range of contextual factors, including parents’ characteristics, their context and features of the intervention. Parents reported barriers and facilitators to using Paediatric Autism Communication Therapy–Generalised strategies across three themes: Motivating Factors; Opportunity and Support; Parent Characteristics. One of these themes, Motivating Factors, was further divided into the subthemes Compatibility and Buy-In and Alignment of Goals and Outcomes. Almost all parents reported continued use of the Paediatric Autism Communication Therapy–Generalised strategies. Facilitators included parental confidence in using the strategies and barriers included child’s behaviour. Consideration of these factors can inform ways to better support parents in future autism interventions.
      Citation: Autism
      PubDate: 2022-10-31T12:47:51Z
      DOI: 10.1177/13623613221125630
       
  • Anxiety in children and youth with autism spectrum disorder and the
           association with amygdala subnuclei structure

    • Free pre-print version: Loading...

      Authors: Abagail Hennessy, Diane Seguin, Susana Correa, Jianan Wang, Julio C Martinez-Trujillo, Rob Nicolson, Emma G Duerden
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder (ASD) is clinically characterized by social and communication difficulties as well as repetitive behaviors. Many children with ASD also suffer from anxiety, which has been associated with alterations in amygdala structure. In this work, the association between amygdala subnuclei volumes and anxiety was assessed in a cohort of 234 participants (mean age = 11.0 years, SD = 3.9, 95 children with ASD, 139 children were non-autistic). Children underwent magnetic resonance imaging. Amygdala subnuclei volumes were extracted automatically. Anxiety was assessed using the Screen for Child Anxiety Related Disorders, the Child Behavior Checklist, and the Strength and Difficulties Questionnaire. Children with ASD had higher anxiety scores relative to non-autistic children on all anxiety measures (all, p 
      Citation: Autism
      PubDate: 2022-10-22T12:20:59Z
      DOI: 10.1177/13623613221127512
       
  • Mental health of autistic adults during the COVID-19 pandemic: The impact
           of perceived stress, intolerance of uncertainty, and coping style

    • Free pre-print version: Loading...

      Authors: Kris Evers, Eef Gijbels, Jarymke Maljaars, Freya Rumball, Debbie Spain, Francesca Happé, Ilse Noens
      Abstract: Autism, Ahead of Print.
      Autistic individuals are at particular risk of experiencing mental health problems during the COVID-19 pandemic, yet little is known about personal characteristics that may underlie this vulnerability. This longitudinal questionnaire study with 149 autistic and 147 non-autistic adults investigated the association between perceived stress and anxiety and depressive symptoms, measured 4 months later. In addition, the moderating impact of intolerance of uncertainty and coping styles on this association was examined. Confirming previous studies, autistic adults reported poorer mental health than non-autistic individuals. Results demonstrated similar moderation models across individuals with versus without autism. Perceived stress at timepoint 1 was associated with anxiety and depression at timepoint 2. Across both participant groups, individuals with maladaptive coping strategies and higher levels of intolerance of uncertainty at timepoint 1 showed more internalizing symptoms at timepoint 2. The findings demonstrate the burden of the pandemic on the mental health of autistic adults, especially on those with high levels of perceived stress, maladaptive coping strategies, or intolerance of uncertainty. Interventions to support autistic adults during and after the pandemic might involve providing psychoeducation about the impact of stress, coping, and intolerance of uncertainty on internalizing symptoms, and teaching more adaptive ways to cope with difficult circumstances.Lay abstractMore and more research shows us that autistic individuals are at risk of experiencing mental health problems in response to the COVID-19 pandemic. However, little is known about why this is the case. At two timepoints during the pandemic, we asked 149 autistic and 147 non-autistic adults about feelings of anxiety, depression, and stress, and about characteristics that may explain why some (autistic) people have a larger chance of developing anxiety and depression during this pandemic. In our study, autistic adults experienced more anxiety and depression than non-autistic adults. Across autistic and non-autistic individuals, the people who experienced more stress at timepoint 1 experienced more anxiety and depression 4 months later. This was especially the case for those individuals who use maladaptive coping styles, such as denial or venting, and for those who have difficulties dealing with uncertain situations. Our findings show the burden of the COVID-19 pandemic on the mental health of autistic adults. Interventions to support autistic adults during and after the pandemic are needed, and they may want to focus on the negative impact of stress and teach autistic (and non-autistic) adults more adaptive ways to cope with stressful circumstances.
      Citation: Autism
      PubDate: 2022-10-20T08:30:20Z
      DOI: 10.1177/13623613221119749
       
  • Cutting our own keys: New possibilities of neurodivergent storying in
           research

    • Free pre-print version: Loading...

      Authors: Hanna Bertilsdotter Rosqvist, Monique Botha, Kristien Hens, Sarinah O’Donoghue, Amy Pearson, Anna Stenning
      Abstract: Autism, Ahead of Print.
      Increasingly, neurodivergent people are sharing their own narratives and conducting their own research. Prominent individuals have integrated the ‘nothing about us without us’ slogan, used by neurodivergent and other disabled social activists, into academia. This article imagines a neuromixed academia. We consider how to work through challenges present in neuromixed encounters; to support cross-neurotype communication and pave the way for an ethos of community and collaboration. We explore how we might create a space in which neurodivergent experiences are seen as just one part of our complex and multifaceted identities. We do this through the process of ‘cutting our own keys’, to try out new possibilities of neurodivergent storying aimed at finding ourselves in our own stories about neurodivergence. This involves borrowing and developing methodological approaches formulated outside of research on different forms of neurodivergence, and to invent our own concepts based on our own embodied experiences and the social worlds we inhabit. Throughout, we mingle our own autoethnographic accounts in relation to research accounts and theories, as a way of illustrating the work with the text as a thinking about neurodivergence with each other in itself.Lay abstractA lot of people who do research are also neurodivergent (such as being autistic or attention deficit hyperactivity disorder), but neurodivergent people do not always feel welcome in research spaces which are often shaped around neurotypical people. Some neurotypical researchers lack confidence in talking to neurodivergent people, and others feel like neurodivergent people might not be able to do good research about other people who are like them without being biased. We think it is important that all researchers are able to work well together, regardless of whether they are neurotypical, autistic, or attention deficit hyperactivity disorder (or any other neurotype) – in truly ‘neurodiverse’ teams. In this article we talk about how to create better spaces for all researchers, where we feel valued for who we are and take each others’ needs into account. We do this using some approaches from other areas of research and talking about how they relate to our personal experiences of being neurodivergent researchers with our own personal stories. This article adds to a growing work on how we can work with people who are different from us, in more respectful and kind ways.
      Citation: Autism
      PubDate: 2022-10-19T10:12:23Z
      DOI: 10.1177/13623613221132107
       
  • Differences in white matter segments in autistic males, non-autistic
           siblings, and non-autistic participants: An intermediate phenotype
           approach

    • Free pre-print version: Loading...

      Authors: Yi-Ling Chien, Yu-Jen Chen, Wan-Ling Tseng, Yung-Chin Hsu, Chi-Shin Wu, Wen-Yih Isaac Tseng, Susan Shur-Fen Gau
      Abstract: Autism, Ahead of Print.
      Whether altered white matter microstructural property of autistic people also exists in non-autistic siblings is uncertain. The microstructures of a neural tract may not be consistent throughout the whole track. We assessed 38 cognitive-able autistic males (aged 15.8 ± 4.4 years), 39 non-autistic siblings (16.5 ± 5.7 years), and 78 age- and sex-matched non-autistic comparison people (14.4 ± 5.3 years) using tract-based automatic analysis of diffusion spectrum imaging and threshold-free cluster-weighted method. First, we identified segments within the right frontal aslant tract, frontostriatal tract, and thalamic radiation to precentral areas in both autistic people and non-autistic siblings that differed from those in non-autistic comparison people. Second, segments within bilateral cingulate gyri and callosal fibers connecting superior temporal lobes differed between autistic people and non-autistic comparison people but not between siblings and non-autistic comparison people. Third, segments within the left inferior longitudinal fasciculus and callosal fibers connecting precuneus showed increased generalized fractional anisotropy in non-autistic siblings. Our findings suggest microstructural properties of some potential neural segments that were similar between autistic people and their non-autistic siblings may serve as intermediate phenotypes of autism, facilitating further etiological searching for autism. Meanwhile, increased microstructural properties in unaffected siblings alone might indicate compensatory processes in the light of genetic predisposition for autism.Lay abstractWhite matter is the neural pathway that connects neurons in different brain regions. Although research has shown white matter differences between autistic and non-autistic people, little is known about the properties of white matter in non-autistic siblings. In addition, past studies often focused on the whole neural tracts; it is unclear where differences exist in specific segments of the tracts. This study identified neural segments that differed between autistic people, their non-autistic siblings, and the age- and non-autistic people. We found altered segments within the tracts connected to anterior brain regions corresponding to several higher cognitive functions (e.g. executive functions) in autistic people and non-autistic siblings. Segments connecting to regions for social cognition and Theory of Mind were altered only in autistic people, explaining a large portion of autistic traits and may serve as neuroimaging markers. Segments within the tracts associated with fewer autistic traits or connecting brain regions for diverse highly integrated functions showed compensatory increases in the microstructural properties in non-autistic siblings. Our findings suggest that differential white matter segments that are shared between autistic people and non-autistic siblings may serve as potential “intermediate phenotypes”—biological or neuropsychological characteristics in the causal link between genetics and symptoms—of autism. These findings shed light on a promising neuroimaging model to refine the intermediate phenotype of autism which may facilitate further identification of the genetic and biological bases of autism. Future research exploring links between compensatory segments and neurocognitive strengths in non-autistic siblings may help understand brain adaptation to autism.
      Citation: Autism
      PubDate: 2022-10-18T10:35:56Z
      DOI: 10.1177/13623613221125620
       
  • The Suicidal Ideation Attributes Scale-Modified (SIDAS-M): Development and
           preliminary validation of a new scale for the measurement of suicidal
           ideation in autistic adults

    • Free pre-print version: Loading...

      Authors: Darren Hedley, Philip J Batterham, Simon M Bury, Angela Clapperton, Kathleen Denney, Cheryl Dissanayake, Phoenix Fox, Thomas W Frazier, Emma Gallagher, Susan M Hayward, Jo Robinson, Ensu Sahin, Julian Trollor, Mirko Uljarević, Mark A Stokes
      Abstract: Autism, Ahead of Print.
      The study describes the development and preliminary psychometric validation of the Suicidal Ideation Attributes Scale-Modified (SIDAS-M), a five-item assessment of suicidal ideation for use with autistic adults. Participants (n = 102 autistic adults; 58% women, 34% men, 8% nonbinary; Mage = 41.75, SD = 12.89) completed an online survey including the SIDAS-M at Time 1 and participated in follow-up interviews at Time 2 (~111 days later). A single factor solution provided good to excellent fit to the data (comparative fit index = 0.961, Tucker–Lewis index = 0.921; standardized root mean square residual = 0.027), with all items showing good to excellent loadings (0.74–0.91). SIDAS-M total score (ω=.930, bias-corrected and accelerated 95% confidence interval (BCa 95% CI) [.90, .95]) demonstrated good convergent validity, correlating significantly with existing suicide specific (ρ=.442–.698, p
      Citation: Autism
      PubDate: 2022-10-14T06:05:14Z
      DOI: 10.1177/13623613221131234
       
  • Short report: Preferences for identity-first versus person-first language
           in a US sample of autism stakeholders

    • Free pre-print version: Loading...

      Authors: Amanda Taboas, Karla Doepke, Corinne Zimmerman
      Abstract: Autism, Ahead of Print.
      Although person-first language is commonly used in many professional settings, this practice has received criticism from self-advocates and scholars who believe that identity-defining features, such as autism, cannot be separated from the individual. Arguments have been made that person-first language may perpetuate stigma by drawing attention to a disability through unconventional language. Increasingly, disability advocates have expressed preferences for identity-first language. We surveyed US autism stakeholders (n = 728) about their usage of and preferences for person-first language and identity-first language. Preference and use of terms varied across stakeholder groups (adults with autism, parents of autistic children, professionals, family members/friends, and a comparison group of people with little to no experience with the autism community). Autistic adults preferred to self-identify using identity-first language (87%); however, a sizable minority of adults with autism prefer to self-identify with person-first language (13%). Professionals were more likely to use, like, and choose person-first language terms, which is consistent with current guidelines for usage in professional settings and prescribed by style guides for written communication. As the language we use shapes our conscious and unconscious perceptions and beliefs of individuals with autism, it is critical to identify the terminology that is preferred by individuals within the community.Lay abstractThere is currently disagreement among professionals (such as teachers, therapists, researchers, and clinicians) about the most appropriate and respectful way to refer to individuals with disabilities in general, and those with autism, in particular. Supporters of person-first language feel that it is important to emphasize the person rather than the disorder or disability, and promote the use of terms such as, “person with autism” or “a person with ASD.” The goal is to reduce stereotypes and discrimination and emphasize the person’s individuality rather than their disability. However, some people within the autism community have questioned the use of person-first terms because they are awkward and use an unconventional style of language that draws attention to the disability. Moreover, autistic individuals and their families are beginning to support the use of identity-first language that embraces all aspects of one’s identity. Surveys in the United Kingdom and Australia support the idea that both types of language are preferred by different groups of autism stakeholder groups. In our study, we surveyed autism stakeholders in the United States. Overwhelmingly, autistic adults (n = 299) preferred identity-first language terms to refer to themselves or others with autism. Professionals who work in the autism community (n = 207) were more likely to support and use person-first language. Language is dynamic and our findings support the need for open communication among autism professionals about how we communicate with and about autistic individuals and their families.
      Citation: Autism
      PubDate: 2022-10-14T05:55:22Z
      DOI: 10.1177/13623613221130845
       
  • Parent experiences of obtaining an autism diagnosis for their daughter: An
           interpretative phenomenological analysis

    • Free pre-print version: Loading...

      Authors: Nerelie C Freeman, Pascale Paradis
      Abstract: Autism, Ahead of Print.
      The process of getting an autism diagnosis can be a stressful and uncertain time for families. While the experiences of parents seeking an autism diagnosis for their child have been explored in previous research, the experiences of families with a daughter have been underrepresented. It is likely that their experience is markedly different given that females are often misdiagnosed and/or are diagnosed at a later age. Semi-structured interviews were conducted with six families, and interpretative phenomenological analysis was used along with member checks to derive themes from the participants’ narratives. Three superordinate themes emerged from the analysis: ‘Something’s not right’ consisted of narratives describing the process of getting their daughter diagnosed and ‘So many barriers’ captured the factors that delayed assessment and diagnosis. Finally, the third theme ‘I wanted to just get this process done and dusted’ explored the range of emotions experienced by families during the assessment process. The importance of challenging outdated conceptualisations of autism and providing further training to increase health professionals’ confidence when diagnosing autistic females is emphasised, as well as recognising that families may experience a range of emotions during the assessment and diagnostic process, including positive ones.Lay abstractAutistic females are often diagnosed later than males and are also more likely to be misdiagnosed with other conditions. Co-occurring conditions may also be diagnosed at the time of the assessment but their autism diagnosis is missed. The majority of research examining the parent experience of obtaining an autism diagnosis for their child has included predominantly or exclusively male children in their samples. This study examines the experiences of parents in obtaining an autism diagnosis for their daughters in Australia through interview data which allowed for an exploration of their lived experiences. Several of the parents reported positive feelings of excitement or curiosity in relation to the assessment process which are emotions that have not been reported in earlier studies. While recent research advances have improved our understanding of gender differences in autistic behaviours, the findings of this study suggest that some practitioners have obsolete knowledge which may lead to misdiagnosis or missed diagnosis in some females. Although the extent that these experiences are representative of parents in the wider community is unknown, the fact that they are still being reported in the present day suggests that a proportion of health professionals continue to practice with outdated conceptualisations of autism.
      Citation: Autism
      PubDate: 2022-10-12T07:01:30Z
      DOI: 10.1177/13623613221129830
       
  • Detecting dodgy behaviour: The role of autism, autistic traits and theory
           of mind

    • Free pre-print version: Loading...

      Authors: Neil Brewer, Carmen A Lucas, Alliyza Lim, Robyn L Young
      Abstract: Autism, Ahead of Print.
      We examined whether theory of mind difficulties often considered to characterise autistic individuals impair their ability to detect the presence of dodgy or suspicious behaviour in interactions, thereby rendering them especially vulnerable to becoming involved in criminal activity or being victimised. Using a signal detection theory approach, we compared autistic (N = 72; Verbal Comprehension Index = 88–122, M = 106.6) and non-autistic (N = 70; Verbal Comprehension Index = 86–120, M = 104.4) adults’ ability to detect dodgy or suspicious behaviour across a broad array of scenarios (N = 136). Although theory of mind performance was poorer for the autistic group, frequentist and Bayesian analyses indicated there were no group differences in either the standard measures of discrimination performance obtainable using a signal detection theory approach or in terms of a bias towards reporting dodgy behaviour. Furthermore, there was no indication of a relationship between dodginess detection and autistic traits. However, regardless of group membership, theory of mind difficulties were associated with poorer discrimination of dodgy behaviour, highlighting an individual difference variable that may increase the vulnerability of both autistic and non-autistic individuals to involvement in some form of criminal activity or to becoming a victim of crime.Lay abstractDifficulties in reading others’ minds make it difficult to anticipate their future behaviour. It has often been argued that such difficulties contribute to autistic individuals becoming enmeshed in criminal activity. However, supportive scientific evidence is virtually non-existent. We compared the ability of groups of autistic and non-autistic adults of similar intellectual ability to detect dodgy or suspicious behaviour across a wide range of scenarios. Although the autistic group performed more poorly than the non-autistic group on an established measure of mindreading, there were no group differences in the ability to detect dodginess. Nor did we find any evidence that detecting dodgy behaviour was associated with the degree of autistic traits reported by individual participants. However, when we combined the two groups, difficulty reading the minds of others was indeed associated with poorer detection of dodginess, thus highlighting a characteristic of individuals that may well increase the likelihood of becoming involved in crime or exploited for autistic and non-autistic individuals alike.
      Citation: Autism
      PubDate: 2022-10-11T08:28:15Z
      DOI: 10.1177/13623613221125564
       
  • An evaluation of intervention research for transition-age autistic youth

    • Free pre-print version: Loading...

      Authors: Kristen Bottema-Beutel, Shannon Crowley LaPoint, So Yoon Kim, Sarah Mohiuddin, Qun Yu, Rachael McKinnon
      Abstract: Autism, Ahead of Print.
      In this systematic evaluation of intervention research for transition-age autistic youth, we examined quality indicators in 193 group and single-case design intervention studies, which tested effects on 1258 outcomes. Behaviorally based interventions were the most common intervention type. We found significant threats to internal validity for the majority of studies, including inadequate randomization, unmasked assessors, and too few data points to infer functional relations. The majority of outcomes were measured in contexts similar to the intervention and were conceptualized as behaviors directly addressed by intervention procedures. As such, they are of unclear long-term utility for autistic people entering adulthood. Adverse events were rarely reported. We suggest several avenues for improving intervention research for this age group.Lay abstractIn this study, we assess the quality of intervention research that focuses on autistic youth who are 14–22 years old. We found 193 different studies on this topic, and carefully reviewed them. Most of these studies tested strategies that were behavioral. This means that they used procedures like prompting and rewards to change participants’ behavior. We found that the majority of studies had problems that make it hard to determine whether or not the intervention worked. The problems related to how researchers designed their studies, and how they measured the study outcomes. We also found that researchers rarely tried to find out if the strategies they studied had unintended negative effects for participants. Because of these issues, we make suggestions for how researchers might design better studies that will let people know how well the strategies worked.
      Citation: Autism
      PubDate: 2022-10-03T09:45:55Z
      DOI: 10.1177/13623613221128761
       
  • Strategies for capacity building in a low-resource setting:
           Stakeholders’ voices

    • Free pre-print version: Loading...

      Authors: James D Lee, Hedda Meadan, Enkhjin Oyunbaatar, Amarbuyan Amar
      Abstract: Autism, Ahead of Print.
      Although global prevalence of autism has grown substantially, researchers still report inequity in access to evidence-based interventions in many low-resource settings where majority of world’s children live. Capacity building of diverse stakeholders in low-resource settings has been suggested to be a potential way to mitigate low levels of access to resources; however, little is known about what these stakeholders consider as helpful strategies in capacity building. In this qualitative research, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with professionals in Mongolia. Three themes emerged from this study, including (a) partnership, (b) advocacy, and (c) empowerment. Each theme also contained several categories. For example, partnerships included enhancing collaboration among stakeholders and collaboration with international development agencies; advocacy included parental and legislative advocacy; and empowerment included training for diverse stakeholders, including caregivers and professionals. Implications and directions for future research are also suggested.Lay abstractPrevalence of autism is increasing all around the globe, but there is still great inequity in accessing evidence-based interventions. Although the field of autism research has made great strides in identifying and establishing evidence-based interventions, dissemination and implementation of these interventions have been reported as inequitable. This inequity is especially highlighted in many low-resource settings, such as Mongolia. As a field, there is still much to be learned about what strategies are used by stakeholders in low-resource settings to build capacity and to mitigate the hardships. To gain a deeper understanding of strategies for capacity building within a low-resource setting, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with various professionals who work in Mongolia. These stakeholders reported three main strategies, including (a) partnership, (b) advocacy, and (c) empowerment, which included several strategies and implications on capacity-building practices. Furthermore, the findings from this study may suggest important implications for future intervention research.
      Citation: Autism
      PubDate: 2022-09-27T12:25:01Z
      DOI: 10.1177/13623613221127077
       
  • ‘Instruments are good at eliciting information; scores are very
           dangerous’: The perspectives of clinical professionals regarding
           neurodevelopmental assessment

    • Free pre-print version: Loading...

      Authors: Barry Coughlan, Matt Woolgar, Emma JL Weisblatt, Robbie Duschinsky
      Abstract: Autism, Ahead of Print.
      Clinical judgement is a crucial part of autism and attention deficit hyperactivity disorder (ADHD) assessments. This study aims to harness insights from psychology and sociology to explore clinical perspectives and assessment practices of autism and attention deficit hyperactivity disorder. Qualitative interviews were conducted with health care professionals (n = 17). Interviews were conducted between January and May 2019. Data were analysed using a thematic approach. Themes were sorted into two interrelated categories (1) approaches to diagnosis (2) elements of diagnosis. Approaches to diagnosis were comprised of the following subthemes: nature of diagnosis, application of diagnosis: natural and pragmatic, revisiting conceptualisations: sub-optimal practice & unhelpful diagnoses, autism and attention deficit hyperactivity disorder. Elements of diagnosis contained three related subthemes: contextualising standardised assessments, triangulating material, organisational factors. There is sometimes a pragmatic as well as nosological dimension to diagnosis. Competing desires for consistency and utility add further complexity to neurodevelopmental assessment.Lay abstractAutism and attention deficit hyperactivity disorder are common behaviourally diagnosed conditions. One of the key aspects of diagnosis is clinical judgement. Yet despite decades of research, it is only in recent times that researchers have started exploring clinicians’ perspectives on diagnosing these conditions. We aimed to add to this body of knowledge by conducting interviews with 17 experienced health care professionals in the United Kingdom to hear their perspectives on diagnosing autism and attention deficit hyperactivity disorder. Clinicians reflected that for some children and young people, diagnosis is reasonably straightforward; however, in other situations, decisions are made on more pragmatic grounds (i.e. will this be helpful). We identified some differences of opinion between professionals and organisation which adds to the complexity of applying a diagnosis. We recommend several areas for future research and point to some practical and philosophical implications of the work.
      Citation: Autism
      PubDate: 2022-09-26T05:52:23Z
      DOI: 10.1177/13623613221121413
       
  • Concomitant medication use in children with autism spectrum disorder: Data
           from the Autism Biomarkers Consortium for Clinical Trials

    • Free pre-print version: Loading...

      Authors: Logan Shurtz, Chloe Schwartz, Charlotte DiStefano, James C McPartland, April R Levin, Geraldine Dawson, Natalia M Kleinhans, Susan Faja, Sara J Webb, Frederick Shic, Adam J Naples, Helen Seow, Raphael A Bernier, Katarzyna Chawarska, Catherine A Sugar, James Dziura, Damla Senturk, Megha Santhosh, Shafali S Jeste
      Abstract: Autism, Ahead of Print.
      Children with autism spectrum disorder are prescribed various medications to address behavior and mood. In clinical trials, individuals taking concomitant psychotropic medications often are excluded to maintain homogeneity and prevent contamination of clinical endpoints. However, this choice may compromise the representativeness of the sample. In a recent study designed to identify biomarkers and endpoints for clinical trials (the Autism Biomarkers Consortium for Clinical Trials), school-age children with autism spectrum disorder were enrolled without excluding for medications, providing the opportunity to examine characteristics of psychotropic medication use and guide future decisions on medication-related inclusion criteria. The aims of the current analysis were (1) to quantify the frequency and type of psychotropic medications reported in school-age children enrolled in the study and (2) to examine behavioral features of children with autism spectrum disorder based on medication classes. Of the 280 children with autism spectrum disorder in the cohort, 42.5% were taking psychotropic medications, with polypharmacy in half. The most commonly reported psychotropic medications included melatonin, stimulants, selective serotonin reuptake inhibitors, alpha agonists, and antipsychotics. Our findings suggest that exclusion of children taking concomitant psychotropic medications could limit the representativeness of the study population, perhaps even excluding children who may most benefit from new treatment options.Lay abstractChildren with autism spectrum disorder are prescribed a variety of medications that affect the central nervous system (psychotropic medications) to address behavior and mood. In clinical trials, individuals taking concomitant psychotropic medications often are excluded to maintain homogeneity of the sample and prevent contamination of biomarkers or clinical endpoints. However, this choice may significantly diminish the clinical representativeness of the sample. In a recent multisite study designed to identify biomarkers and behavioral endpoints for clinical trials (the Autism Biomarkers Consortium for Clinical Trials), school-age children with autism spectrum disorder were enrolled without excluding for medications, thus providing a unique opportunity to examine characteristics of psychotropic medication use in a research cohort and to guide future decisions on medication-related inclusion criteria. The aims of the current analysis were (1) to quantify the frequency and type of psychotropic medications reported in school-age children enrolled in the ABC-CT and (2) to examine behavioral features of children with autism spectrum disorder based on medication classes. Of the 280 children with autism spectrum disorder in the cohort, 42.5% were taking psychotropic medications, with polypharmacy in half of these children. The most commonly reported psychotropic medications included melatonin, stimulants, selective serotonin reuptake inhibitors, alpha agonists, and antipsychotics. Descriptive analysis showed that children taking antipsychotics displayed a trend toward greater overall impairment. Our findings suggest that exclusion of children taking concomitant psychotropic medications in trials could limit the clinical representativeness of the study population, perhaps even excluding children who may most benefit from new treatment options.
      Citation: Autism
      PubDate: 2022-09-10T05:19:52Z
      DOI: 10.1177/13623613221121425
       
  • Insistence on sameness for food space appropriation: An exploratory study
           on Brazilians with autism (self-)diagnosis in adulthood

    • Free pre-print version: Loading...

      Authors: JungJa Park-Cardoso, Ana Paula Soares da Silva
      Abstract: Autism, Ahead of Print.
      Insistence on Sameness has been pathologized as a subtype of restricted, repetitive patterns of behavior, interests, or activities, in autism. We examined the meanings of Insistence on Sameness for autistic adults through the lens of critical autism studies and environmental psychology, exploring their foodways and experiences of food environments, in relation to eating out and grocery shopping, and their experiences of autism (self-)diagnosis. Data were collected from earlier individual email interviews with Brazilian adults on the autism spectrum (N = 16), either formally diagnosed in adulthood (n = 10) or self-diagnosed (n = 6). Our thematic analysis generated the following three themes: (1) Insistence on Sameness behaviors in food space as participants’ efforts for human–environment optimization—reducing uncertainty, uncontrollability, and exposure to unwanted sensory stimuli and social interaction; (2) suppressed Insistence on Sameness behaviors for being considered weird habits; and (3) realization of Insistence on Sameness as an authentically autistic way of coping when self-knowledge deepens through autism (self-)diagnosis. Our findings suggest autistic adults’ insistence on sameness is an authentically autistic way to appropriate space and exercise their right to comfortably co-exist and live as human beings and as themselves.Lay abstractInsistence on sameness is common in autistic individuals and continues into adulthood. Research shows it may be a way to cope with environments because of their sensory sensitivity, intolerance to uncertainty, and anxiety. Understanding the reasons for insistence on sameness from the perspective of autistic adults is important. To study the meanings of insistence on sameness for autistic adults, we interviewed 16 Brazilian autistic adults. All 10 formally diagnosed participants were diagnosed in adulthood. Six participants identified as being on the autism spectrum without formal diagnosis. During the interviews by email, we first asked about participants’ experiences with autism diagnosis, either formal diagnosis or self-diagnosis. Then, we asked about their experiences in places for eating out and grocery shopping. We found they tended to always go to the same places and use protective accessories to eat or shop comfortably. But their such behaviors were considered weird habits, first by other people and later by themselves. While trying to control their weird habits because of social pressure, they often suffered anxiety and meltdowns. When they finally learned of their autism in adulthood, they began to better understand who they are and why they experience the environment differently from others. This new understanding taught them that their so-called weird habits are actually part of their authentically autistic ways to cope with the weirder world. This study suggests that autistic adults’ insistence on sameness is an authentically autistic way to exercise their right to comfortably co-exist and live as human beings and as themselves.
      Citation: Autism
      PubDate: 2022-09-10T05:16:18Z
      DOI: 10.1177/13623613221121417
       
  • Integrating autistic perspectives into autism science: A role for autistic
           autobiographies

    • Free pre-print version: Loading...

      Authors: Janette Dinishak, Nameera Akhtar
      Abstract: Autism, Ahead of Print.
      Autism science faces several conceptual and ethical challenges. These include fundamental issues such as how to characterize autism and the fact that research findings and how they are interpreted sometimes contribute to negative perceptions of autistic people. We argue that some of these challenges can be addressed by centering the perspectives of autistic people and focus on one way to accomplish this: having non-autistic researchers critically engage with personal accounts of autistic experience. We discuss some of the advantages and challenges of engaging with these accounts and argue that they can play a role in the reform of autism science.Lay abstractAutism science faces challenges in how to think about autism and what questions to focus on, and sometimes contributes to stigma against autistic people. We examine one way that non-autistic researchers may start to combat these challenges: by reading and reflecting on autistic people’s descriptions of their personal experiences (e.g. autobiographies) of what it is like to be autistic. In this article, we review some of the advantages and challenges of this approach and how it may help combat some of the challenges currently facing autism science by focusing studies on the questions autistic people find most important, counteracting stereotypes, and increasing understanding of autistic experiences.
      Citation: Autism
      PubDate: 2022-09-09T05:47:32Z
      DOI: 10.1177/13623613221123731
       
  • Barriers and facilitators for obtaining support services among underserved
           families with an autistic child: A systematic qualitative review

    • Free pre-print version: Loading...

      Authors: Carla Wallace-Watkin, Jeff Sigafoos, Hannah Waddington
      Abstract: Autism, Ahead of Print.
      Families of autistic children from underserved populations participate in support services at lower rates than other families. To better understand possible reasons for this inequity, we reviewed qualitative studies examining parent-reported barriers and facilitators to accessing and participating in support services. A systematic search identified 18 articles that met inclusion criteria. Resulting thematic analysis located three themes: (a) support service accessibility, (b) diversity of support services, and (c) community. Parents reported that financial pressures, geographic location, and service flexibility influenced their ability to obtain support services. Implications for service delivery and areas for future research are discussed.Lay abstractFamilies from underrepresented ethnic or racial groups and those with limited financial resources could experience more difficulty in accessing support services for their autistic child due to certain types of barriers. We searched academic journals, websites, and other sources for studies which looked at what barriers might be present for such families and what might help families access support services for their autistic child. The search found 18 studies. Results from each study were examined and coded into themes. Parents reported that accessibility, diversity of support services, and stigma influenced their experiences with support services. We discuss what these findings might mean for future research and for service delivery.
      Citation: Autism
      PubDate: 2022-09-09T05:44:09Z
      DOI: 10.1177/13623613221123712
       
  • Non-pharmacological interventions for autistic children: An umbrella
           review

    • Free pre-print version: Loading...

      Authors: David Trembath, Kandice Varcin, Hannah Waddington, Rhylee Sulek, Cathy Bent, Jill Ashburner, Valsamma Eapen, Emma Goodall, Kristelle Hudry, Jacqueline Roberts, Natalie Silove, Andrew Whitehouse
      Abstract: Autism, Ahead of Print.
      The breadth of available non-pharmacological interventions for autistic children, with varying evidence for efficacy summarised in multiple systematic reviews, creates challenges for parents, practitioners, and policymakers in navigating the research evidence. In this article, we report the findings of an umbrella review of 58 systematic reviews of non-pharmacological interventions for autistic children (aged 0–12 years). Positive therapeutic effects were identified for Behavioural interventions, Developmental interventions, Naturalistic Developmental Behavioural Interventions, Technology-based interventions, and Cognitive Behaviour Therapy across several child and family outcomes. Positive effects for certain practices within Sensory-based interventions and ‘other’ interventions were limited to select child and family outcomes. Both inconsistent and null intervention effects were found for Treatment and Education of Autistic and related Communication-handicapped Children, and Animal-assisted interventions across outcomes. The possible influence of child (chronological age, core autism characteristics, and related skills) and delivery (agent, mode, format, and amount) characteristics on intervention effects was rarely examined, and inconsistent where reported. Twenty-seven systematic reviews (47%) were rated as ‘high’ quality. Few systematic reviews examined children’s participation and quality of life or adverse effects. The findings highlight the need for individualised evidence-based decision-making when selecting interventions for autistic children.Lay abstractWhat is already known about the topic'The delivery of evidence-based interventions is an important part of the clinical pathway for many autistic children and their families. However, parents, practitioners, and policymakers face challenges making evidence informed decisions, due to the wide variety of interventions available and the large, and often inconsistent, body of evidence regarding their effectiveness.What this paper adds'This is a comprehensive umbrella review, also known as a ‘review of reviews’, which examined the range of interventions available, the evidence for their effectiveness, and whether effects were influenced by factors relating to individual children (e.g. chronological age, core autism characteristics, and related skills) or the ways interventions were delivered (by whom and in what setting, format, mode, and amount). There was evidence for positive therapeutic effects for some, but not all, interventions. No single intervention had a positive effect for all child and family outcomes of interest. The influence of child and delivery characteristics on effects was unclear.Implications for practice, research, and policyThe findings provide parents, practitioners, and policymakers with a synthesis of the research evidence to inform decision-making and highlight the importance of individualised approaches in the absence of clear and consistent evidence. The findings also highlight the need to improve consistency and completeness in reporting of research studies, so that the same questions may be answered more comprehensively in the future.
      Citation: Autism
      PubDate: 2022-09-09T05:38:47Z
      DOI: 10.1177/13623613221119368
       
  • Describing (pre)linguistic oral productions in 3- to 5-year-old autistic
           children: A cluster analysis

    • Free pre-print version: Loading...

      Authors: Pauline Maes, Marielle Weyland, Mikhail Kissine
      Abstract: Autism, Ahead of Print.
      In many autistic children, speech onset is delayed and expressive language emerges after 3 years of age. We qualitatively and quantitatively describe oral productions of autistic preschoolers, including many non- or minimally speaking, recorded during interactions with a caregiver and with an experimenter. Data clustering on manually coded oral production samples indicates five validated linguistic profiles of oral production in this diverse and inclusive sample (n = 59) of 3- to 5-year-old autistic children with highly variable expressive language abilities. These profiles are then compared on a series of demographic (age, socioeconomic status) and psychometric (autism severity, nonverbal and verbal IQ) measures, as well as on additional measures of language (expressive vocabulary, phonetic inventories). Two clusters are composed of speaking autistic children, while the three others comprise non- or minimally speaking children with qualitatively different patterns of vocal productions. The five-profile division suggests that traditional binary division of speaking vs nonspeaking children does not do justice to the complexity of early expressive language in autism.Lay abstractFor most autistic children, spoken language emergence and development happen after the age of 3. Once they start developing and using spoken language, some eventually manage to reach typical levels of language abilities, while others remain minimally speaking into adulthood. It is therefore difficult to consider young autistic preschoolers as a homogeneous group in terms of spoken language levels. In our study, we breakdown a representative and inclusive group of children on the spectrum aged from 3 to 5 into five subgroups that correspond to different linguistic profiles. To do so, we qualitatively described children’s (pre)verbal productions elicited during interactions with a parent and with an experimenter. We then used a type of statistical analysis called cluster analysis to group together the children that had a similar expressive (pre)linguistic behavior. Using this analysis, we were able to delineate five linguistic profiles with qualitatively different patterns of vocal production. Two of these profiles are composed of speaking children; the three others are composed of non- or minimally speaking children. Our findings show that traditional binary division of speaking versus nonspeaking autistic children is not precise enough to describe the heterogeneity of early spoken language in young autistic children. They also support the use of qualitative descriptions of vocal productions and speech to accurately document children’s level of language, which could, in turn, help design very finely tailored language intervention specific to each child.
      Citation: Autism
      PubDate: 2022-09-08T06:07:08Z
      DOI: 10.1177/13623613221122663
       
  • No differences between adults with and without autism in audiovisual
           synchrony perception

    • Free pre-print version: Loading...

      Authors: Ricarda F Weiland, Tinca JC Polderman, Dirk JA Smit, Sander Begeer, Erik Van der Burg
      Abstract: Autism, Ahead of Print.
      To facilitate multisensory processing, the brain binds multisensory information when presented within a certain maximum time lag (temporal binding window). In addition, and in audiovisual perception specifically, the brain adapts rapidly to asynchronies within a single trial and shifts the point of subjective simultaneity. Both processes, temporal binding and rapid recalibration, have been found to be altered in individuals with an autism spectrum disorder diagnosis. Here, we used a large adult sample (autism spectrum disorder: n = 75, no autism spectrum disorder: n = 85) to replicate these earlier findings. In this study, audiovisual stimuli were presented in a random order across a range of stimulus onset asynchronies, and participants indicated whether they were perceived simultaneously. Based on the synchrony distribution, their individual temporal binding window and point of subjective simultaneity were calculated. Contrary to previous findings, we found that the temporal binding window was not significantly different between both groups. Rapid recalibration was observed for both groups but did not differ significantly between groups. Evidence of an age effect was found which might explain discrepancies to previous studies. In addition, neither temporal binding window nor rapid recalibration was correlated with self-reported autistic symptoms or sensory sensitivity.Lay abstractIt has been known for a long time that individuals diagnosed with autism spectrum disorder perceive the world differently. In this study, we investigated how people with or without autism perceive visual and auditory information. We know that an auditory and a visual stimulus do not have to be perfectly synchronous for us to perceive them as synchronous: first, when the two are within a certain time window (temporal binding window), the brain will tell us that they are synchronous. Second, the brain can also adapt quickly to audiovisual asynchronies (rapid recalibration). Although previous studies have shown that people with autism spectrum disorder have different temporal binding windows, and less rapid recalibration, we did not find these differences in our study. However, we did find that both processes develop over age, and since previous studies tested only young people (children, adolescents, and young adults), and we tested adults from 18 to 55 years, this might explain the different findings. In the end, there might be quite a complex story, where people with and without autism spectrum disorder perceive the world differently, even dependent on how old they are.
      Citation: Autism
      PubDate: 2022-09-08T06:02:31Z
      DOI: 10.1177/13623613221121414
       
  • Parents’ perceptions of the impact of COVID-19 and school transition on
           autistic children’s friendships

    • Free pre-print version: Loading...

      Authors: Laura Fox, Kathryn Asbury, Aimee Code, Umar Toseeb
      Abstract: Autism, Ahead of Print.
      Friendships play a key role in supporting a successful transition to a new school for autistic children and young people. However, little is known about how these relationships have been impacted by restrictions put in place during the COVID-19 pandemic. This study aimed to explore how parents perceived the impact of COVID-19 on their autistic child’s friendships during transition to a new school. Semi-structured interviews were carried out with 14 parents of autistic children in the United Kingdom. Data were analysed using reflexive thematic analysis. Parents discussed a variety of experiences, which differed between and within school types and age groups. Several factors influenced children’s friendships during transition including support from their new school and others’ understanding of their needs. Parents described the differing expectations of what friendship was and how that affected their children’s existing and new relationships. For some, COVID-19 negatively impacted on friendships by reducing contact with existing and new friends. Others experienced positive or neutral experiences due to lockdown restrictions. This study highlights the diversity of needs among autistic children and calls for a personalised approach to transition support beyond the pandemic as one way of supporting autistic children to develop positive peer relationships.Lay abstractResearch shows that moving schools can be a challenging time for autistic children and young people. One factor that has been found to support successful transition is friendships. However, there is little research exploring how transition between schools affects autistic children’s friendships, and even less on how children’s relationships during transition have been impacted by COVID-19. Fourteen parents of autistic children and young people were interviewed about their child’s move to a new school and the impact they felt this had on their friendships. Parents described how moving with existing friends helped some children to find the transition less challenging. Others had differing experiences, with their children’s friendships playing a much smaller role in the move. Differences were also seen with regard to the impact of COVID-19, with some parents speaking of how hard being away from friends was for their child, while others found the social restrictions a welcome break from interacting with peers. The study highlights how different the experiences of autistic individuals, and their parents, can be and the importance of a child-centred approach to transition support.
      Citation: Autism
      PubDate: 2022-09-06T09:15:58Z
      DOI: 10.1177/13623613221123734
       
  • Maternal obesity, diabetes, preeclampsia, and asthma during pregnancy and
           likelihood of autism spectrum disorder with gastrointestinal disturbances
           in offspring

    • Free pre-print version: Loading...

      Authors: Sarah A Carter, Jane C Lin, Ting Chow, Xin Yu, Md Mostafijur Rahman, Mayra P Martinez, Klara Feldman, Sandrah P Eckel, Jiu-Chiuan Chen, Zhanghua Chen, Pat Levitt, Frederick W Lurmann, Rob McConnell, Anny H Xiang
      Abstract: Autism, Ahead of Print.
      Gastrointestinal disturbances (GIDs) are relatively common in children diagnosed with autism spectrum disorder (ASD). This study assessed associations between maternal obesity, diabetes, preeclampsia, and asthma and likelihood of ASD with GIDs. This retrospective cohort study included 308,536 mother–child pairs of singletons born between 2001 and 2014 in a single integrated health care system. Social demographics, maternal health conditions during pregnancy, and child’s ASD and/or GID diagnosis by age 5 were extracted from electronic medical records. Child’s outcome was classified as: no ASD no GIDs; no ASD with GIDs; ASD no GIDs; and ASD with GIDs. Multinomial logistic regression was used to estimate odds ratios of child’s outcomes associated with maternal exposures, adjusting for covariates. Compared to children with neither disorder, each maternal condition was associated with higher odds of no ASD with GIDs, ASD no GIDs, and ASD with GIDs. Association was greatest for likelihood of ASD with GIDs (Maternal obesity odds ratio (95% confidence interval): 1.37 (1.22–1.54); Diabetes: 1.50 (1.28–1.76); Preeclampsia: 1.63 (1.36–1.95); Asthma: 1.39 (1.17–1.67); relative to no ASD no GIDs). Associations were robust to mutual adjustment for all maternal exposures. Maternal obesity, diabetes, preeclampsia, and asthma exposure during pregnancy may increase likelihood of both GIDs and ASD with or without co-occurring GIDs in offspring. This association was greatest in children diagnosed with ASD with co-occurring GIDs.Lay abstractAutism spectrum disorder is heterogeneous and often accompanied by co-occurring conditions. Previous studies have shown that maternal health conditions during pregnancy including obesity, diabetes, preeclampsia, and asthma were associated with increased likelihood of autism. However, little has been done examining the likelihood associated with autism with co-occurring conditions. This study assessed these maternal health conditions in relationship to autism and gastrointestinal disturbances, a common co-occurring condition in children diagnosed with autism. Data included 308,536 mother-child pairs from one integrated health care system with comprehensive electronic medical records. Among the study cohort, 5,131 (1.7%) children had a diagnosis of autism by age 5. Gastrointestinal disturbances were present in 35.4% of children diagnosed with autism and 25.1% of children without autism diagnoses. Our results showed that each of the four maternal health conditions during pregnancy was associated with increased likelihood of gastrointestinal disturbances, autism without gastrointestinal disturbances, and autism with gastrointestinal disturbances. For all four maternal health conditions, the association was greatest for likelihood of autism with gastrointestinal disturbances. Given that children diagnosed with autism are more likely to have gastrointestinal disturbances and over 80% of gastrointestinal disturbances in this cohort were diagnosed prior to autism diagnosis, this study suggests that there may be common biological pathways between autism and gastrointestinal disturbances impacted by these maternal exposures. Future studies are warranted to assess associations between different exposures and autism with other co-occurring conditions to increase our understanding of autism heterogeneity.
      Citation: Autism
      PubDate: 2022-09-05T05:13:29Z
      DOI: 10.1177/13623613221118430
       
  • The impact of a positive autism identity and autistic community solidarity
           on social anxiety and mental health in autistic young people

    • Free pre-print version: Loading...

      Authors: Kate Cooper, Ailsa J Russell, Jiedi Lei, Laura GE Smith
      Abstract: Autism, Ahead of Print.
      Autism is increasingly seen as a social identity, as well as a clinical diagnosis. Evidence suggests that autistic adults who have stronger autism social identification have better psychological well-being. Autism is a condition which impacts on social interactions, and so one’s sense of autism identification may be particularly important for reducing social anxiety, which is common in autistic adolescents. We aimed to investigate how the subcomponents of autism identification relate to social anxiety in autistic young people. We hypothesised that autistic young people who had a higher satisfaction with their autism identity, and more solidarity with other autistic people, would have better psychological well-being and lower social anxiety. 121 autistic young people between the ages of 15–22 completed questionnaires measuring self-reported autism traits, social anxiety, psychological well-being, and different components of autism social identification. We conducted regression analyses controlling for age, gender, and autism traits. We found that higher autism satisfaction was associated with higher psychological well-being and lower social anxiety. Young people with higher autism solidarity had higher psychological well-being, but there was no significant relationship between solidarity and social anxiety. We conclude that it is important to support autistic young people to develop autism social identification.Lay abstractAutism is a diagnosis given to individuals by professionals but is also increasingly seen as an identity which an individual can choose for themselves. We wanted to explore how having autism as an identity affects autistic young people. There is evidence that autistic adults have better psychological well-being when they feel more solidarity with other autistic people and feel positively about being autistic. We know that autistic teenagers often feel anxious in social situations. Having a positive autism identity might help alleviate social anxiety associated with being autistic. We wanted to find out if autistic young people who felt more solidarity with other autistic people, and had more positive feelings about autism, had better psychological well-being and less social anxiety. We asked 121 autistic people aged 15–22 years to complete some questionnaires. These questionnaires asked about the young person’s autism traits, social anxiety, and psychological well-being. The questionnaires also asked how satisfied they felt to be autistic (satisfaction) and how much solidarity they felt with the autism community (solidarity). We found that autistic young people who had higher autism satisfaction had better psychological well-being and lower social anxiety. Young people who felt more solidarity with other autistic people had higher psychological well-being. There was no association between autism solidarity and social anxiety. We conclude that is important to support autistic young people to develop positive feelings about autism and to feel solidarity with other autistic people.
      Citation: Autism
      PubDate: 2022-09-05T05:10:36Z
      DOI: 10.1177/13623613221118351
       
  • Multimorbidity patterns and subgroups among autistic adults with
           intellectual disability: Results from the EFAAR study

    • Free pre-print version: Loading...

      Authors: Stéphanie Miot, Raphaël Chancel, Marianne Peries, Sophie Crepiat, Sylvie Couderc, Eric Pernon, Marie-Christine Picot, Véronique Gonnier, Claude Jeandel, Hubert Blain, Amaria Baghdadli
      Abstract: Autism, Ahead of Print.
      Multimorbidity, defined as having two or more chronic health conditions, is associated with elevated polypharmacy and mortality. Autism spectrum disorder is a whole-body chronic health condition in which comorbidities – in particular co-occurring intellectual disability – contribute to high clinical heterogeneity, polypharmacy and premature mortality. We aimed to determine specific multimorbidity patterns among autism spectrum disorder + intellectual disability adults, and to identify participants’ subgroups based on multimorbidity features. We used baseline examination data from a previous exploratory prospective multicentric study that included 63 autism spectrum disorder + intellectual disability adults. Multimorbidity patterns and subgroups were determined using clustering approaches. We observed 84.1% multimorbidity, significantly associated with age. We identified a dominant multimorbidity pattern, combining immune dysfunction, gastrointestinal disorders, neurological, and joint diseases. Four participants’ subgroups could be distinguished by multimorbidity, autonomy and polypharmacy. Two clusters were distinguished by the prevalence and consequences of multimorbidity. One cluster involved women with endocrine disorders. The final cluster was composed of older adults with the lowest autism spectrum disorder severity but greater multimorbidity, including cardiovascular and kidney diseases. Our results support a role for the gut–brain axis in the pathophysiology of autism spectrum disorder + intellectual disability multimorbidity. Furthermore, we identified patient subgroups with specific needs, underscoring the importance of a holistic approach for autism spectrum disorder + intellectual disability adults.Lay abstractMultimorbidity relates to having multiple chronic health conditions. It is a risk factor for poor health and reduces life expectancy. Autistic people have multiple chronic health conditions and die prematurely, especially if they have an intellectual disability (autism spectrum disorder and intellectual disability). Certain pathophysiological processes observed in autism spectrum disorder are common to those related to the genesis and/or maintenance of multimorbidity. Furthermore, multimorbidity could be helpful in better identifying patient subgroups in autism spectrum disorder. It is therefore essential to better characterize multimorbidity and its consequences in the subgroup of autism spectrum disorder + intellectual disability individuals to offer them personalized care. We conducted a preliminary study of 63 autism spectrum disorder + intellectual disability adults to classify them according to their multimorbidity and search for a specific combination of chronic health conditions. We observed high and early multimorbidity in this sample and identified four classes of participants, distinguished by their multimorbidity status, independence and number of treatments. In addition, we observed a dominant combination of multimorbidity in our sample, combining immune dysfunction and gastrointestinal disorders, neurological and joint diseases. These findings support the hypothesis that an altered gut–brain relationship is involved in the risk of autism spectrum disorder, its outcome, and its association with chronic health conditions. Although larger studies are needed, our results suggest that subgroups of autism spectrum disorder + intellectual disability individuals can be identified based on their multimorbidity and potentially different ageing trajectories. A more comprehensive and personalized approach is needed to reduce the burden of multimorbidity and increase the quality of life and life expectancy in autism spectrum disorder/ intellectual disability.
      Citation: Autism
      PubDate: 2022-09-03T06:52:13Z
      DOI: 10.1177/13623613221121623
       
  • Reflections on my experiences as a non-autistic autism researcher

    • Free pre-print version: Loading...

      Authors: Sandy Thompson-Hodgetts
      Abstract: Autism, Ahead of Print.

      Citation: Autism
      PubDate: 2022-09-03T06:49:52Z
      DOI: 10.1177/13623613221121432
       
  • Toward deeper understanding and wide-scale implementation of naturalistic
           developmental behavioral interventions

    • Free pre-print version: Loading...

      Authors: Sophia R D’Agostino, Ana D Dueñas, Alice Bravo, Kelsie Tyson, Diondra Straiton, Giovanna L Salvatore, Cressida Pacia, Melanie Pellecchia
      Abstract: Autism, Ahead of Print.
      Naturalistic Developmental Behavioral Interventions (NDBIs) have a strong and growing evidence base. Yet, NDBIs are not implemented on a wide scale within early intervention programs for children on the autism spectrum. Potential reasons for the slow adoption of NDBIs likely stem from the differing theoretical orientations of behavioral and developmental sciences from which NDBI are derived, and a lack of training, knowledge, and support for implementing NDBIs within the behavior analytic community. In support of efforts to promote wide-scale implementation of NDBIs, we clarify their common features, discuss possible misconceptions, offer reasons why NDBIs should be widely implemented, and provide recommendations to the autism service community, intervention developers, and researchers to improve their dissemination and implementation.Lay AbstractNaturalistic Developmental Behavioral Interventions (NDBIs) are a group of early interventions that use a variety of strategies from applied behavioral and developmental sciences. Although Naturalistic Developmental Behavioral Interventions have been demonstrated effective, Naturalistic Developmental Behavioral Interventions are not implemented on a wide scale within early intervention programs for children on the autism spectrum. Potential reasons likely stem from differing theoretical orientations of developmental and behavioral sciences and practitioners’ lack training, knowledge, and support for implementing Naturalistic Developmental Behavioral Interventions. In support of efforts to promote wide-scale implementation of Naturalistic Developmental Behavioral Interventions, we (1) clarify their common features, (2) discuss possible misconceptions, and (3) offer reasons why Naturalistic Developmental Behavioral Interventions should be widely implemented. We also provide recommendations to the autism service community, intervention developers, and researchers.
      Citation: Autism
      PubDate: 2022-09-03T06:47:27Z
      DOI: 10.1177/13623613221121427
       
  • The Autism-Spectrum Quotient–Hebrew version: Psychometric properties of
           a full and a short form, adapted for DSM-5

    • Free pre-print version: Loading...

      Authors: Ofer Golan, Michael Terner, Sandra Israel-Yaacov, Carrie Allison, Simon Baron-Cohen
      Abstract: Autism, Ahead of Print.
      The Autism-Spectrum Quotient is a self-report scale, used to assess autistic traits. It was tested cross-culturally, and a short version was created to clinically refer adults for an autism assessment. This study aimed to examine the properties of the Hebrew version of the Autism-Spectrum Quotient and to create a short version suitable for Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Ninety-three clinically diagnosed autistic adults (24 females) aged 18–53, and 147 comparable controls (34 females) completed the Hebrew version of the Autism-Spectrum Quotient. Ten clinicians specializing in diagnosing autism in adults classified the Autism-Spectrum Quotient’s items according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. The Hebrew version of the Autism-Spectrum Quotient showed good internal consistency (Kuder-Richardson 20 = 0.90). Based on the prevalence of autism among clinically referred adults (70%), receiver operating characteristic analysis yielded area under the curve of 0.94. A cutoff of 21 demonstrated high sensitivity (0.90), specificity (0.76), positive predictive value (0.90), and negative predictive value (0.77). The short version of the Hebrew Autism-Spectrum Quotient included five social communication and five restricted, repetitive behavior items, which represented two social communication and two restricted, repetitive behavior criteria of Diagnostic and Statistical Manual of Mental Disorders (5th ed.). It showed good internal consistency (Kuder-Richardson 20 = 0.86), and receiver operating characteristic analysis yielded area under the curve of 0.95. An optimal clinical cutoff of five showed high sensitivity (0.90), specificity (0.82), positive predictive value (0.92), and negative predictive value (0.78). The Hebrew version of the Autism-Spectrum Quotient and the short version of the Hebrew Autism-Spectrum Quotient can be effectively used to help screen for autism in clinically referred adults.Lay AbstractDespite the attempt to diagnose autism at an early age, there are still many individuals who would only get an autism diagnosis in adulthood. For these adults, a questionnaire that could assist in highlighting their need to seek diagnostic assessment is needed. The Autism-Spectrum Quotient is a self-report scale used to assess autistic traits. It was tested cross-culturally, and a short version was recommended to help identify adults who should be referred for an autism assessment. However, its relevance for the up-to-date diagnostic criteria, according to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), has not been tested. This study aimed to examine the psychometric properties of the Hebrew version of the Autism-Spectrum Quotient and to create a short version of the Hebrew Autism-Spectrum Quotient, based on items which map on to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. Ninety-three autistic adults (24 females), aged 18–51, clinically diagnosed according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.), and 147 comparable controls (34 females) filled out the Hebrew version of the Autism-Spectrum Quotient. Ten clinicians who specialize in diagnosing autism in adults classified the Autism-Spectrum Quotient’s items according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria. The short version of the Hebrew Autism-Spectrum Quotient comprised items that best differentiated between adults with and without autism, five items representing each of the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) diagnostic domains. The overall probability for participants to be correctly classified as autistic or neurotypical was 86% for the Hebrew version of the Autism-Spectrum Quotient and 88% for the short version of the Hebrew Autism-Spectrum Quotient. We conclude that both versions are reliable and sensitive instruments that can help referring adults for autism assessment.
      Citation: Autism
      PubDate: 2022-09-02T11:51:33Z
      DOI: 10.1177/13623613221117020
       
  • Autistic experiences of applied behavior analysis

    • Free pre-print version: Loading...

      Authors: Laura K Anderson
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder is a developmental disability affecting individuals across their entire lifespan. Autistic individuals have differences from nonautistic people (sometimes called allistic or neurotypical people) in social skills, communication, and atypical interests and/or repetitive behaviors. Approximately 1 in 59 children are born autistic, leading to over 3.5 million autistic Americans. Applied behavior analysis is one of the first and most common interventions recommended for autistic children. However, autistic self-advocates argue that applied behavior analysis damages their mental health and treats them as though they are a problem to be fixed. This phenomenological qualitative study examined seven autistic individuals who received applied behavior analysis interventions as children to understand what autistic adults perceive as the costs and benefits of applied behavior analysis interventions, how they feel about the applied behavior analysis interventions they received, and what recommendations autistic adults have for the future of applied behavior analysis. The findings include: Autistic adults remember traumatic events from applied behavior analysis, do not believe that they should be made to behave like their peers, gained some benefits but suffered significant negative long-term consequences, believe that applied behavior analysis is an unethical intervention, and recommend that applied behavior analysis practitioners listen to autistic people and consider using interventions in place of applied behavior analysis.Lay AbstractAutism spectrum disorder is a developmental disability affecting individuals across their entire lifespan. Autistic individuals have differences from nonautistic people (sometimes called allistic or neurotypical people) in social skills, communication, and atypical interests and/or repetitive behaviors. Applied behavior analysis is one of the first and most common interventions recommended for autistic children. However, autistic individuals argue that applied behavior analysis damages their mental health and treats them as though they are a problem to be fixed. This study examined the experiences of seven autistic individuals who received applied behavior analysis interventions as children to understand what autistic adults think about their applied behavior analysis interventions, how they feel about the applied behavior analysis interventions they received, and what recommendations autistic adults have for the future of applied behavior analysis. The findings include: Autistic adults remember traumatic events from applied behavior analysis, do not believe that they should be made to behave like their peers, gained some benefits but suffered significant negative long-term consequences, believe that applied behavior analysis is an unethical intervention, and recommend that applied behavior analysis practitioners listen to autistic people and consider using interventions in place of applied behavior analysis.
      Citation: Autism
      PubDate: 2022-08-24T05:03:52Z
      DOI: 10.1177/13623613221118216
       
  • Toward feeling, understanding, and caring: The development of empathy in
           young autistic children

    • Free pre-print version: Loading...

      Authors: Boya Li, Els Blijd-Hoogewys, Lex Stockmann, Ilaria Vergari, Carolien Rieffe
      Abstract: Autism, Ahead of Print.
      Autistic people are often portrayed as lacking empathy. Yet they are not indifferent to others’ feelings. To advance our understanding of the early development of empathy in autistic children, this longitudinal study followed the development of four empathy abilities: emotion contagion, attention to others, emotion acknowledgment, and prosocial actions, in 1- to 6-year-old autistic children (N = 61; Mage = 55.49 months), in comparison with non-autistic peers (N = 145; Mage = 52.16 months). Once a year, for 4 consecutive years, children’s empathic reactions were evaluated by experimenters who acted out emotional episodes to elicit empathy in children, and by parents who filled out empathy questionnaires. We confirmed autistic children’s difficulty attending to others, acknowledging others’ emotions, and initiating prosocial actions. However, according to parents, they did not differ from non-autistic children in emotion contagion with others’ negative emotions. Notably, autistic children showed a greater increase in prosocial actions over time than their non-autistic peers. We discussed how to interpret these findings in light of the “double empathy problem,” and stressed the importance of removing the stereotypical view of autism. Furthermore, this study was among the first to show that autistic children have the potential to learn and to improve empathy skills.Lay abstractEmpathy is a highly valued human capacity. Yet, autistic people are often portrayed as lacking in empathy. Recent research, which views empathy as a complex construct emerging from multiple interrelated emotional and cognitive processes, argues that, although many autistic people do have difficulty understanding others’ emotions, and this may hinder them from responding to others in a prosocial manner, they are not indifferent to other people’s feelings. Hoping to contribute to a better understanding of the unique challenges that autistic children face in their empathy development, we followed the development of four empathy abilities: emotion contagion, attention to others, emotion acknowledgment, and prosocial actions, in 1- to 6-year-old autistic children, in comparison with non-autistic children. Once a year, for 4 consecutive years, children’s empathy abilities were evaluated by experimenters who acted out emotional episodes to provoke empathy in children, and by parents who filled out empathy questionnaires. We found that autistic children experienced indeed more difficulty attending to others, acknowledging others’ emotions, and initiating prosocial actions toward others. However, according to parents, they did not differ from their non-autistic peers in feeling along with others’ negative emotions. This indicates that it might not be the case that autistic children did not want to act empathetically toward others. Rather, they might not know how to do so. Notably, despite these difficulties, when looking at children’s developmental trajectories, autistic children showed similar improvements over time as non-autistic children. This provides evidence that autistic children have the potential to learn and to improve their empathy skills.
      Citation: Autism
      PubDate: 2022-08-24T05:01:52Z
      DOI: 10.1177/13623613221117955
       
  • Short-term low-intensity Early Start Denver Model program implemented in
           regional hospitals in Northern Taiwan

    • Free pre-print version: Loading...

      Authors: Chung-Hsin Chiang, Tzu-Ling Lin, Hsiang-Yuan Lin, Suk Yin Ho, Ching-Ching Wong, Hsin-Chi Wu
      Abstract: Autism, Ahead of Print.
      The Early Start Denver Model is an evidence-based, comprehensive naturalistic developmental behavioral intervention for young and very young children with autism spectrum disorder. This interdisciplinary model is suitable for the Taiwanese public health system. In this study, we evaluated the effectiveness of an Early Start Denver Model program with adaptation, including a lower intensity, shorter duration, and delivery in general hospitals by multidisciplinary professionals. A quasi-experimental study with pre-, post-intervention, and 6-month follow-up was conducted. Forty-five young children with autism spectrum disorder, aged 2–4 years, were grouped into the Early Start Denver Model and control (the usual community treatment) groups. The Early Start Denver Model group received 6 months of one-on-one intervention for approximately 8–9 h per week. Compared with the control group, the Early Start Denver Model group showed greater improvements in overall development quotient and nonverbal development quotient from pre- to post-intervention, but these differences (a Group-by-Time interaction) did not sustain at the 6-month follow-up. Being mindful of some potential threats to internal validity associated with clinical trial designs and implementation, this study provides preliminary evidence to support the effectiveness of the Early Start Denver Model intervention in regional general hospital settings in the context of Han-Chinese-mainly culture.Lay AbstractThe Early Start Denver Model is an evidence-based early intervention program for young and very young children with autism. This interdisciplinary model is used by many types of professionals, such as psychologists, occupational therapists, speech pathologists, early child special educators, and paraprofessionals, as well as by parents. Most previous studies on the Early Start Denver Model were conducted in the West, and there are scarce studies on the topics of generalization in culture and countries outside the Western world. In this study, we evaluated the effect of the Early Start Denver Model with some adaptations, including a lower intensity, shorter duration, and delivery in regional general hospitals in Northern Taiwan. In total, 45 young children with autism, aged 2–4 years, were divided into the Early Start Denver Model and community-based control groups. The children in the Early Start Denver Model group received one-on-one intervention for approximately 8–9 h per week for 6 months. The results revealed that compared with the control group, the Early Start Denver Model group showed greater gains in overall development ability and nonverbal development ability from pre- to post-intervention. However, these differences did not sustain at the 6-month follow-up after the completion of the intervention. Being mindful of some caveats in trial designs, this study provides preliminary evidence to support the effectiveness of the Early Start Denver Model intervention in the regional general hospital settings in the context of Han-Chinese-mainly culture. Our findings can provide helpful information to stakeholders and policymakers of early intervention service systems for children with autism in Taiwan, as well as in Asian countries.
      Citation: Autism
      PubDate: 2022-08-24T04:59:12Z
      DOI: 10.1177/13623613221117444
       
  • Conducting caregiver focus groups on autism in the context of an
           international research collaboration: Logistical and methodological
           lessons learned in South Africa

    • Free pre-print version: Loading...

      Authors: Jessy Guler, Kearsley A Stewart, Petrus J de Vries, Noleen Seris, Nokuthula Shabalala, Lauren Franz
      Abstract: Autism, Ahead of Print.
      Most autism research has been conducted in high-income countries, with participants typically from White, upper-middle-income families. Given the disparities experienced by autistic individuals living in underserved communities globally, there is a critical need for research to include individuals from culturally, linguistically, socioeconomically, and geographically diverse backgrounds to understand their unique needs. Qualitative research has the potential to describe the “lived experience” of families historically underrepresented in the autism literature. Here we describe the logistical and methodological challenges of conducting focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. Logistical challenges included (1) recruitment, (2) response rate, and (3) resource access. Methodological challenges included (1) participant background and experiences, (2) interpersonal dynamics, and (3) research ethics. We present recommendations based on lessons learned to reduce these challenges and improve rigorous qualitative research practices in similar low-resource contexts.Lay abstractMost of the autism research to date has been conducted in high-income countries, with children and families typically from White, upper-middle-income backgrounds. However, we know there are significant inequalities that exist which influence how autistic individuals from diverse, underserved communities can access services they need. As many of these individuals have not been included in the majority of autism research to date, there is much we do not know about these individuals’ life experiences, which are critically needed to better inform the development and implementation of care for families from historically underrepresented groups. In this article, we describe the research process we took to conduct focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. We specifically describe the lessons we learned in implementing these focus groups and provide recommendations aimed at how to best reduce logistical and methodological challenges moving forward to improve research conducted in similar low-resource contexts.
      Citation: Autism
      PubDate: 2022-08-24T04:57:32Z
      DOI: 10.1177/13623613221117012
       
  • Patterns of sensory processing in young children with autism: Differences
           in autism characteristics, adaptive skills, and attentional problems

    • Free pre-print version: Loading...

      Authors: Girija Kadlaskar, Pin-Hsun Mao, Ana-Maria Iosif, David Amaral, Christine Wu Nordahl, Meghan Miller
      Abstract: Autism, Ahead of Print.
      Sensory processing differences are widely reported in autism. However, our understanding of sensory profiles in this population has been complicated due to the heterogeneous presentation of sensory symptoms. We addressed this by using latent profile analysis, allowing for the identification of more homogeneous sensory classes in a large cohort (n = 211 (52 females), 2–4 years) of autistic children using subscale scores from the Short Sensory Profile. Based on the patterns of both severity and sensory modality, four classes emerged: Moderate/Mixed (35.5%), Severe/Mixed (8.5%), Moderate/Broad (14.6%), and Low/Mixed (41.1%). While a subset of children displayed normative sensory-related behaviors, the majority showed a combination of both hypo- and hyper-reactivity across various sensory modalities. Subsequent analyses showed that the class characterized by Severe/Mixed sensory differences exhibited greater problems in a variety of areas such as social and adaptive skills and attention-deficit/hyperactivity disorder symptoms, whereas the Low/Mixed class showed overall fewer problems. Identification of homogeneous classes may be useful for neurophysiological/imaging studies focusing on studying underlying mechanisms linked with specific sensory patterns. These findings may help clinicians identify children with particular sensory profiles that might relate to other social, adaptive, or behavioral domains with potential implications for intervention.Lay abstractResearch has found differences in responding to various sensory stimuli among autistic individuals, which are associated with social and adaptive skills. However, our understanding of sensory profiles in autism has been complicated due to the variable presentation of sensory symptoms. One way to better understand variability in sensory symptoms is to use advanced statistical approaches, such as latent profile analysis, that allow for the identification of more similar sensory classes in otherwise variable groups. We used the Short Sensory Profile to identify homogeneous classes of sensory reactivity in autistic children based on both severity and modality and examined whether sensory classes differed in terms of autism characteristics, adaptive skills, and attention-deficit/hyperactivity disorder symptoms. Based on the pattern of both severity and modality, four sensory classes emerged and were named Moderate/Mixed (35.5%; probable-to-definite differences in all modalities except in movement sensitivity and low energy/weakness), Severe/Mixed (8.5%; definite sensory differences in all modalities except in low energy/weakness), Moderate/Broad (14.6%; probable-to-definite differences in all modalities), and Low/Mixed (41.1%; typical scores in most modalities with probable differences in taste/smell sensitivity, under-responsive/seeks sensation, and auditory filtering). The Severe/Mixed class exhibited greater problems in a variety of areas such as social, adaptive, and attention-deficit/hyperactivity disorder symptoms, whereas the Low/Mixed class showed overall fewer problems. This may provide insight for clinicians and researchers aiming to understand whether autistic children who exhibit distinct sensory patterns are more or less likely to also experience social, adaptive, and/or attention/behavior-related difficulties.
      Citation: Autism
      PubDate: 2022-08-24T04:53:55Z
      DOI: 10.1177/13623613221115951
       
  • Women seeking an autism diagnosis in Australia: A qualitative exploration
           of factors that help and hinder

    • Free pre-print version: Loading...

      Authors: Sarah Murphy, Rebecca L Flower, Rachel Jellett
      Abstract: Autism, Ahead of Print.
      An autism diagnosis in adulthood can increase women’s self-compassion and inform appropriate supports. This study explored what helped and hindered autistic women when accessing an adulthood autism diagnosis in Australia. Ten autistic women diagnosed as adults within the past 5 years participated in a semi-structured interview about their experiences of accessing a diagnosis. Framework analysis was used to identify barriers and facilitators on person, provider and system levels. Person-level factors included women’s recognition of their autism, motivation, preparation, social support and approach during the assessment. Provider-level factors related to providers’ level of knowledge and skill in working with autistic women, as well as the women’s experience of being dismissed or misdiagnosed. Interactions between person- and provider-level factors highlighted that the diagnostic process is relational. System-level factors included the requirements of the diagnostic process (time, financial costs, and technology) and the nature of diagnostic criteria and assessment tools used. These factors provided the context in which person-level and provider-level factors operated. The experiences of participants highlight improvements that could be made to accessing an adulthood autism diagnosis for women in Australia, including provider knowledge of the heterogeneity of autism and the development of resources to help autistic women prepare for their diagnostic assessment.Lay abstractAn autism diagnosis can have a big impact on women and make it possible to access support. This study explored women’s experiences of being diagnosed with autism as an adult in Australia, to try to understand what was helpful (facilitators) and unhelpful (barriers) for them during this process. We interviewed 10 autistic women who had been diagnosed in the last 5 years. Framework analysis was used to understand the data. We wanted to understand barriers and facilitators relating to the individual participants, the professionals they saw and the system they went through for their diagnostic assessment. Women reported that being able to recognise they were autistic, being motivated, preparing for the assessment, having social support and unmasking to be themselves were helpful during the diagnostic process. They reported that having a knowledgeable diagnostician who made accommodations for their needs assisted them during the assessment process. When providers dismissed the participants when they first raised the possibility they were autistic, it delayed them in seeking an assessment. At the system level, the women in this study found some aspects of the healthcare system difficult to navigate, particularly costs and long waitlists. Some found the assessment tools used were not well suited to them. The experiences of the women in this study highlight improvements that could be made to accessing an adulthood autism diagnosis in Australia. These include improving provider knowledge of the varied presentation of autism and the development of resources to help autistic women prepare for their diagnostic assessment.
      Citation: Autism
      PubDate: 2022-08-18T05:11:45Z
      DOI: 10.1177/13623613221117911
       
  • Autistics working in academia: What are the barriers and facilitators'

    • Free pre-print version: Loading...

      Authors: Sandra C Jones
      Abstract: Autism, Ahead of Print.
      Autistic people are under-represented in university student populations, but their numbers are growing, and the barriers to their inclusion are being recognised. Outside of the student body, autistic people in academia are often overlooked, although this is starting to change with the growth in inclusive autism research. However, they remain absent from the academic literature, despite the evident synergies between autistic strengths and academic careers. This study explored the perceptions of 37 autistic academics from various disciplines: what are the positives of working in academia for autistic people, and what are the negatives' Participants reported many positive aspects of an academic career, including the fit with the strengths, characteristics and motivations of autistic people. However, they also noted barriers and challenges – social, environmental and structural – many of which could be addressed by greater awareness and acceptance of autism. Given the considerable benefits that autistic teachers and researchers bring to higher education, there is a clear need for universities and colleges to implement changes to the physical and social environment to make academia more inclusive.Lay AbstractAcademia appears to provide an ideal career option for autistic people: the opportunity to lock ourselves away in an ivory tower and utilise our extensive knowledge of a very specific topic. We know autistic people are underrepresented in postsecondary education, and there is a growing body of research on how to make universities more inclusive. What is missing from the literature is the voices of autistic people who have survived the university experience and gone on to become university teachers and researchers. Increasing the visibility of autistics in academia, and exploring the barriers and facilitators they experience in an academic career, is important to raise the aspirations of future university students and graduates. This study included 37 autistic academics from various disciplines and countries, exploring their perceptions of the positive and negative aspects of being an autistic in academia.
      Citation: Autism
      PubDate: 2022-08-12T06:44:27Z
      DOI: 10.1177/13623613221118158
       
  • Benefits and harms of interventions to improve anxiety, depression, and
           other mental health outcomes for autistic people: A systematic review and
           network meta-analysis of randomised controlled trials

    • Free pre-print version: Loading...

      Authors: Audrey Linden, Lawrence Best, Freya Elise, Danielle Roberts, Aoife Branagan, Yong Boon Ernest Tay, Laura Crane, James Cusack, Brian Davidson, Ian Davidson, Caroline Hearst, William Mandy, Dheeraj Rai, Edward Smith, Kurinchi Gurusamy
      Abstract: Autism, Ahead of Print.
      Mental health difficulties are prevalent in autistic people with ~14%–50% having experienced depression and ~40%–80% having experienced anxiety disorders. Identifying interventions that improve autistic people’s mental health is a top priority. However, at present, there is no high-quality network meta-analysis of benefits and harms of different interventions. We conducted a systematic review and network meta-analysis of randomised controlled trials, searching MEDLINE, EMBASE, other databases, and trial registers until 17 October 2020. We included randomised controlled trials reporting anxiety or depression in a suitable format. We calculated effect estimates and 95% credible intervals using Bayesian network meta-analysis. Our search identified 13,794 reports, of which 71 randomised controlled trials (3630 participants) were eligible for inclusion. All trials had high risk of bias. The follow-up period ranged from 1 to 24 months. Evidence indicates uncertainty about the effects of different interventions, with more high-quality evidence needed. Available evidence suggests that some forms of cognitive behavioural therapy may decrease anxiety and depression scores in autistic children and adults; mindfulness therapy may decrease anxiety and depression scores in autistic adults with previous mental health conditions; and behavioural interventions may provide some benefit for depression in autistic children. We recommend that autistic people are given access to mental health interventions available to non-autistic people, following principles of person-centred care.PROSPERO registration ID: CRD42019136093Lay AbstractNearly three out of four autistic people experience mental health problems such as stress, anxiety or depression. The research already done does not guide us on how best to prevent or treat mental health problems for autistic people. Our aim was to look at the benefits and harms of different interventions on mental health outcomes in autistic people. We searched all the published randomised controlled trials (RCTs) about interventions for mental health conditions in autistic people until 17 October 2020. We also searched for RCTs that were not published in peer-reviewed journals. These were obtained from registers of clinical trials online. We then combined the information from all these trials using advanced statistical methods to analyse how good the interventions are. Seventy-one studies (3630 participants) provided information for this research. The studies reported how participants were responding to the intervention for only a short period of time. The trials did not report which interventions worked for people with intellectual disability. In people without intellectual disability, some forms of cognitive behavioural therapy and mindfulness therapy may be helpful. However, further research is necessary. Many trials used medications to target core features of autism rather than targeting mental health conditions, but these medications did not help autistic people. Until we have more evidence, treatment of mental health conditions in autistic people should follow the evidence available for non-autistic people. We plan to widely disseminate the findings to healthcare professionals through medical journals and conferences and contact other groups representing autistic people.
      Citation: Autism
      PubDate: 2022-08-12T05:31:50Z
      DOI: 10.1177/13623613221117931
       
  • ‘Autistic person’ or ‘person with autism’' Person-first
           language preference in Dutch adults with autism and parents

    • Free pre-print version: Loading...

      Authors: Riley Buijsman, Sander Begeer, Anke M Scheeren
      Abstract: Autism, Ahead of Print.
      The language used to refer to autism has been a topic of ongoing debate. Research in English-speaking countries indicated an overall preference for identity-first language (‘autistic person’) among autistic adults rather than person-first language (‘person with autism’). We examined terminology preference in Dutch autistic adults (n = 1026; 16–84 years; 57% women) and parents of autistic children (n = 286) via an online survey. A majority of self-reporting adults with autism (68.3%) and parents (82.5%) demonstrated a person-first language preference. A younger age, higher IQ and more autistic traits predicted a relatively stronger identity-first language preference in autistic adults. We conclude that language and culture may impact terminology preference of adults with autism and parents. For now, we advocate to use a mix of person-first language and identity-first language in academic papers to cover the full range of preferences.Lay abstractThere are different words to describe people with an autism diagnosis. For instance, we can put the person before autism (e.g. ‘person with autism’), or we can put autism before the person (e.g. ‘autistic person’). Previous research showed that autistic adults in English-speaking countries generally liked it better when autism is placed before the person. Yet, people also greatly differ in the words they like and dislike. In this study, we examined word preference in Dutch autistic adults (n = 1026; 16–84 years; 57% women) and parents of autistic children (n = 286). Via an online questionnaire, we asked our participants to select one term for autistic people that they liked best. The results showed that most adults with autism (68.3%) and parents (82.5%) preferred to put the person before autism. Younger adults, with a higher intelligence, and with more autistic traits, were a bit more likely to put autism before the person. We conclude that there are large differences in the words that people prefer. Because we found different results in our Dutch participants compared to participants in English-speaking countries, we think that the Dutch language or culture may also play a role in word preference. For now, we advise autism researchers to use both person-first and autism-first language.
      Citation: Autism
      PubDate: 2022-08-12T05:25:05Z
      DOI: 10.1177/13623613221117914
       
  • Mobile and online consumer tools to screen for autism do not promote
           equity

    • Free pre-print version: Loading...

      Authors: Benjamin W Sanders, Steven Bedrick, Sarabeth Broder-Fingert, Shannon A Brown, Jill K Dolata, Eric Fombonne, Julie A Reeder, Luis Andres Rivas Vazquez, Plyce Fuchu, Yesenia Morales, Katharine E Zuckerman
      Abstract: Autism, Ahead of Print.
      Limited access to screening and evaluation for autism spectrum disorder in children is a major barrier to improving outcomes for marginalized families. To identify and evaluate available digital autism spectrum disorder screening resources, we simulated web and mobile app searches by a parent concerned about their child’s likelihood of autism spectrum disorder. Included digital autism spectrum disorder screening tools (a) were on Internet or mobile app; (b) were in English; (c) had a parent user inputting data; (d) assigned likelihood category to child
      Citation: Autism
      PubDate: 2022-08-12T05:23:10Z
      DOI: 10.1177/13623613221114280
       
  • Psychiatry training in autism spectrum disorder and intellectual
           disability: Ongoing gaps and emerging opportunities

    • Free pre-print version: Loading...

      Authors: Natasha Marrus, Kathleen A Koth, Jessica A Hellings, Rachel McDonald, McLeod Frampton Gwynette, Rebecca Muhle, William D Lohr, RA Vasa
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder and intellectual disability are associated with psychiatric comorbidities, yet a 2009 study of US child and adolescent psychiatry program directors indicated that psychiatry residents receive insufficient training in autism spectrum disorder/intellectual disability. This follow-up study surveyed child and adolescent psychiatry and general psychiatry program directors to assess (1) the current extent of residency training in autism spectrum disorder/intellectual disability, (2) program director perceptions of educational topics and resident competency in autism spectrum disorder/intellectual disability, and (3) preferred resources to strengthen autism spectrum disorder/intellectual disability training. As in 2009, many child and adolescent psychiatry program directors reported few lecture hours, although current child and adolescent psychiatry residents saw slightly more patients with autism spectrum disorder but not intellectual disability. General psychiatry program directors reported fewer lecture hours in autism spectrum disorder/intellectual disability and fewer patients with autism spectrum disorder than child and adolescent psychiatry program directors. Both child and adolescent psychiatry and general psychiatry program directors recognized the importance of a range of educational topics in autism spectrum disorder/intellectual disability. Child and adolescent psychiatry program directors reported higher resident competency, and lecture hours and patients seen moderately correlated with resident competency. Program directors indicated that online videos and other resources would help improve autism spectrum disorder/intellectual disability training in their programs. Collectively, these findings suggest minimal improvements in autism spectrum disorder/intellectual disability training over the past decade and highlight the urgent need to advance psychiatry training in this field through dissemination of resources.Lay abstractChildren, adolescents, and adults with autism spectrum disorder and intellectual disability experience high rates of co-occurring psychiatric conditions throughout their lifetime. However, there is a shortage of psychiatrists to treat these populations. We evaluated how much education psychiatrists-in-training receive on how to care for individuals with autism spectrum disorder/intellectual disability. We found that in many psychiatry programs, residents receive limited training experiences in autism spectrum disorder/intellectual disability involving lectures and patient contact and that psychiatry program directors would benefit from more resources to strengthen education in autism spectrum disorder/intellectual disability.
      Citation: Autism
      PubDate: 2022-08-03T10:08:46Z
      DOI: 10.1177/13623613221112197
       
  • Leveraging technology to make parent training more accessible: Randomized
           trial of in-person versus online executive function training for parents
           of autistic children

    • Free pre-print version: Loading...

      Authors: Lauren Kenworthy, Deb Childress, Anna Chelsea Armour, Alyssa Verbalis, Anqing Zhang, Mary Troxel, Rebecca Handsman, Kelly Kocher, Yetta Myrick, Monica Werner, Katie C Alexander, Lynn Cannon, Laura G Anthony
      Abstract: Autism, Ahead of Print.
      This randomized trial compared the first online parent training program for an evidence-supported executive function intervention for autism to in-person parent training with the same dose and content. Parents of autistic children (8–12 years-old; Full Scale IQ above 70) were randomized to in-person (n = 51) or online (n = 46) training. Training acceptability and feasibility were rated highly by parents, without significant differences between groups. The completion rate was lower for parents in the online versus the in-person training condition, but neither the total time spent with training materials, nor parent and child outcomes differed by condition. Parents reported that training resulted in a reduction in caregiver strain (Cohen’s d = 0.66) and modest improvements in child flexibility, emotional control and global EF, but not planning and organization. Dose of parent training had a significant positive effect on child planning and organization problems. These findings did not support the hypothesized superiority of online to in-person training, but they did indicate online is as effective as in-person training at helping parents learn to improve their autistic children’s EF abilities and reduce their own experience of parenting strain. Implications included increased access to training for parents who experience barriers to receiving in-person care.Trial Registration: clinicaltrials.gov Identifier: NCT02708069Lay AbstractThis study compared the first online parent training program for executive function intervention for autism to in-person parent training on the same content. Participants were parents of autistic children, who were between 8 and 12 years of age and did not have intellectual disability. Parents were randomized to the in-person (n = 51) or online (n = 46) training conditions. Both trainings were developed with stakeholder (parents and autistic people) guidance. In this trial, most parents reported that they liked both trainings and that they were able to implement what they learned with their children. Parents in both groups spent equivalent amounts of time (about 8 hours) with the training materials, but while 94% of parents in the in-person training attended both parent trainings, only 59% of parents in the online group completed all 10 online modules. Parents reported that it was difficult to stay motivated to complete the online trainings over the 10-week trial. Parent and child outcomes did not differ significantly between the groups. Overall, parents reported that the trainings resulted in a reduction in their own parenting strain and improvements in their child’s flexibility, emotional control, and global executive function, but not planning and organization. These findings indicated brief in-person and online training can help parents learn to support and improve their autistic children’s executive function abilities, reducing their own experience of parenting strain. The finding that the online training was equivalent to the in-person trainings is important because it is accessible to parents who encounter barriers to in-person care.
      Citation: Autism
      PubDate: 2022-08-02T09:56:30Z
      DOI: 10.1177/13623613221111212
       
  • Parental experience of parent-mediated intervention for children with ASD:
           A systematic review and qualitative evidence synthesis

    • Free pre-print version: Loading...

      Authors: Lucie Jurek, Kathy Leadbitter, Bruno Falissard, Cyrille Colin, Sandrine Touzet, Marie-Maude Geoffray
      Abstract: Autism, Ahead of Print.
      While the effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented, information on the experience of parents involved in parent-mediated interventions is limited. We performed a systematic review with qualitative evidence synthesis to explore the experience of parent-mediated interventions in parents of children with autism spectrum disorder. PubMed, Scopus, PsycINFO, CINAHL, and Sociology Collection were searched from the date of their creation until 25 February 2022. Qualitative studies reporting parents’ experience of parent-mediated interventions were included. Two independent reviewers assessed the risk of bias. The findings of the selected studies were extracted and synthesized using the meta-aggregation method. The results are reported according to PRISMA and ENTREQ guidelines. A total of 23 studies were synthesized representing 345 participants. We found 34 categories that were summarized in four synthesized themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child. Parents’ experience of parent-mediated interventions in autism spectrum disorder is balanced between positive outcomes for them and their child, emotional struggles, and some difficulties in implementing parent-mediated interventions. Based on these results, we propose new ways to improve implementation of parent-mediated interventions and research in the field.Lay abstractThe effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented but information on the experience of parents involved in parent-mediated interventions is limited.This study is the first synthesis of evidence concerning the experience of parents involved in parent-mediated interventions. It synthesizes the voice of 345 parents across the world into four general themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child.The findings of our study provide evidence that parent-mediated interventions should be adapted to the needs of each family. Specific care and support should be offered to parents in addition to parent-mediated interventions. Our study, however, highlights which outcomes are important to parents and should be considered in future studies.
      Citation: Autism
      PubDate: 2022-07-28T11:38:03Z
      DOI: 10.1177/13623613221112204
       
  • Mental health service availability for autistic youth in New York City: An
           examination of the developmental disability and mental health service
           systems

    • Free pre-print version: Loading...

      Authors: Paige E Cervantes, Greta R Conlon, Dana EM Seag, Michael Feder, Qortni Lang, Samantha Meril, Argelinda Baroni, Annie Li, Kimberly E Hoagwood, Sarah M Horwitz
      Abstract: Autism, Ahead of Print.
      Psychiatric conditions are common in autism; however, a multitude of barriers exist in accessing community-based mental health care for autistic youth. Perhaps the first and most formidable barrier is identifying a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. These systems typically function independently of one another, contributing to the complexity of accessing services. To identify gaps caused by New York’s multisystem care model for autistic youth, and as part of a larger quality improvement initiative to advance suicide risk management in several New York City emergency departments, we conducted a telephone survey to identify outpatient mental health service availability for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state’s mental health and developmental disability systems. Results demonstrated that while a greater proportion of clinics in the mental health system compared with agencies in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), there is remarkably limited service availability overall. Efforts to reduce these care inequities through policy reform and improving workforce capacity are urgently needed.Lay abstractAutistic children and adolescents experience high rates of co-occurring mental health conditions, including depression and suicidality, which are frequently identified by stakeholders as treatment priorities. Unfortunately, accessing community-based mental health care is often difficult for autistic youth and their families. The first obstacle families confront is finding a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. The mental health and developmental disability systems are two of the most commonly accessed, and previous work has shown there is often confusion over which of these systems is responsible for providing mental health care to autistic individuals. In this study, we conducted a telephone survey to determine the availability of outpatient mental health services for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state’s mental health and developmental disability systems. Results showed that while a greater percentage of clinics in the mental health system compared with in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), many more did not offer care to autistic youth and there were very few options overall. Therefore, it is important that changes to policy are made to increase the availability of services and that mental health care providers’ knowledge and confidence in working with autistic youth are improved.
      Citation: Autism
      PubDate: 2022-07-27T08:54:31Z
      DOI: 10.1177/13623613221112202
       
  • A comparison of the content and nature of worries of autistic and
           neurotypical young people as they transition from school

    • Free pre-print version: Loading...

      Authors: Jack Waldman, Ann McPaul, Andrew Jahoda
      Abstract: Autism, Ahead of Print.
      The prevalence of anxiety is higher in autistic young people, compared to neurotypical youths. However, the nature of worry in autistic young people is under-researched. Transition from secondary school is a time of change and can be challenging for autistic adolescents. This project explored the content and emotional impact of worries in neurotypical and autistic young people during transition. Twenty-two autistic people and 22 neurotypical people, aged 16–18, were recruited from mainstream schools. Participants completed a novel task to identify and explore the nature of their main worries. The participants’ worry frequency and distress levels in relation to their most salient concerns, and their anxiety levels, were measured. Content analysis highlighted similarities and differences between the two groups’ worries. Both groups worried about failure and their prospects of further education. Autistic people were more concerned about change and friendship, whereas more salient worries for neurotypical individuals were about work and money. Autistic people were more distressed by their worries than neurotypical individuals. Findings regarding the nature of autistic young people’s worries may help inform interventions. Moreover, asking autistic people about their worries as they leave school may help to address their concerns, ease their transition and reduce distress.Lay abstractAutistic young people experience higher levels of anxiety than neurotypical young people. Having worries is part of feeling anxious. This makes it surprising that very little research has looked at the kind of worries autistic young people have. Leaving school, in particular, can be a worrying time for young people. Twenty-two autistic young people and 22 neurotypical young people who were at mainstream secondary schools agreed to take part in the study. They were between 16 and 18 years of age. They were asked to sort through a series of pictures, showing the different types of worries that young people might experience. They were then asked to pick out their four main worries and say how much they thought about each worry and how upset the worry made them. They also completed a questionnaire about their level of anxiety. There were similarities and differences between the autistic and neurotypical young people’s worries. Both groups worried about failing and how they might get on in further education. The autistic young people were more worried about change and friendships. Work and money were particular concerns for the neurotypical young people. The autistic young people said that they found their worries more upsetting than the neurotypical young people. Having a better understanding of autistic young people’s worries at important points in their lives might mean that more timely help and support can be given to them. Simply knowing what to ask young autistic school leavers about may help them to express unspoken concerns.
      Citation: Autism
      PubDate: 2022-07-27T08:52:27Z
      DOI: 10.1177/13623613221111313
       
  • Mental representations of speech and musical pitch contours reveal a
           diversity of profiles in autism spectrum disorder

    • Free pre-print version: Loading...

      Authors: Li Wang, Jia Hoong Ong, Emmanuel Ponsot, Qingqi Hou, Cunmei Jiang, Fang Liu
      Abstract: Autism, Ahead of Print.
      As an information-bearing auditory attribute of sound, pitch plays a crucial role in the perception of speech and music. Studies examining pitch processing in autism spectrum disorder have produced equivocal results. To understand this discrepancy from a mechanistic perspective, we used a novel data-driven method, the reverse-correlation paradigm, to explore whether the equivocal findings in autism spectrum disorder have high-level origins in top–down comparisons of internal mental representations of pitch contours. Thirty-two Mandarin-speaking autistic individuals and 32 non-autistic individuals undertook three subtasks testing mental representations of pitch contours in speech, complex tone and melody, respectively. The results indicate that while the two groups exhibited similar representations of pitch contours across the three conditions, the autistic group showed a significantly higher intra-group variability than the non-autistic group. In addition, the two groups did not differ significantly in internal noise, a measure of the robustness of participant responses to external variability, suggesting that the present findings translate genuinely qualitative differences and similarities between groups in pitch processing. These findings uncover for the first time that pitch patterns in speech and music are mentally represented in a similar manner in autistic and non-autistic individuals, through domain-general top–down mechanisms.Lay abstractAs a key auditory attribute of sounds, pitch is ubiquitous in our everyday listening experience involving language, music and environmental sounds. Given its critical role in auditory processing related to communication, numerous studies have investigated pitch processing in autism spectrum disorder. However, the findings have been mixed, reporting either enhanced, typical or impaired performance among autistic individuals. By investigating top–down comparisons of internal mental representations of pitch contours in speech and music, this study shows for the first time that, while autistic individuals exhibit diverse profiles of pitch processing compared to non-autistic individuals, their mental representations of pitch contours are typical across domains. These findings suggest that pitch-processing mechanisms are shared across domains in autism spectrum disorder and provide theoretical implications for using music to improve speech for those autistic individuals who have language problems.
      Citation: Autism
      PubDate: 2022-07-18T09:39:52Z
      DOI: 10.1177/13623613221111207
       
  • Alexithymia and intolerance of uncertainty predict somatic symptoms in
           autistic and non-autistic adults

    • Free pre-print version: Loading...

      Authors: Fionnuala Larkin, Brianna Ralston, Sophie Jayne Dinsdale, Sakura Kimura, Marianna Emma Hayiou-Thomas
      Abstract: Autism, Ahead of Print.
      Autistic people experience heightened rates of physical health problems but may also experience elevated levels of somatic symptoms (e.g. pain, headache, gastrointestinal symptoms) due to psychological factors which are common in autism. This online study sought to compare rates of somatic symptoms (Patient Health Questionnaire-15) in older adolescents and adults who were autistic (n = 51), non-autistic (n = 119) and who suspected they were autistic (n = 32), while controlling for health conditions. We investigated psychological risk factors that may predispose individuals to experience somatic symptoms, including alexithymia (General Alexithymia Factor Score), interoception (Body Awareness Questionnaire) and intolerance of uncertainty (Intolerance of Uncertainty Scale). Diagnosed autistic individuals had higher rates of alexithymia and intolerance of uncertainty. We also found higher somatic symptoms in diagnosed autistic individuals, controlling for mental and physical health. However, hierarchical regression showed that somatic symptoms were predicted by physical and mental health conditions, female gender, alexithymia, and intolerance of uncertainty, regardless of autism status. The results suggest that autistic and non-autistic individuals experience more bodily discomfort in part due to gender, physical and mental health, alexithymia, and difficulty tolerating uncertainty. Implications for mental and physical health care in autism are discussed.Lay abstractAutistic people have more physical health problems than non-autistic people. We were interested in whether autistic people experience more discomfort in their bodies than non-autistic people and whether certain psychological traits contribute to that. A survey was completed online by older adolescents and adults, 51 of whom were autistic, 32 of whom thought they might be autistic but were not diagnosed and 119 who were not autistic. They completed measures of somatic symptoms (daily experience of pain, discomfort, dizziness), alexithymia (difficulty identifying and expressing feelings), interoception (how much people are aware of their bodies) and intolerance of uncertainty (how people handle doubt or uncertainty), and reported any physical or mental health conditions. We found that the autistic participants had more physical and mental health conditions than the non-autistic participants, but even when we took account of this, they experienced higher levels of somatic symptoms. We looked at which psychological factors influenced levels of somatic symptoms across the whole sample, and found that alexithymia, intolerance of uncertainty, having physical health problems, being female and the number of mental health conditions predicted somatic symptoms, while interoception and autism diagnosis did not. The findings suggest that people may be more likely to experience physical discomfort if they are female, and have difficulty identifying and expressing feeling and difficulty tolerating doubt. As these psychological factors are more prominent in autism, we think this is important for physical and mental health providers to know about, so that these psychological factors can be considered when assessing and treating autistic people.
      Citation: Autism
      PubDate: 2022-07-16T05:36:51Z
      DOI: 10.1177/13623613221109717
       
  • Relationships between alexithymia, interoception, and emotional empathy in
           autism spectrum disorder

    • Free pre-print version: Loading...

      Authors: Christiana D Butera, Laura Harrison, Emily Kilroy, Aditya Jayashankar, Michelle Shipkova, Ariel Pruyser, Lisa Aziz-Zadeh
      Abstract: Autism, Ahead of Print.
      Some studies suggest that individuals with autism spectrum disorder have reduced emotional empathy while others do not. The presence of co-occurring alexithymia in autism spectrum disorder and differences in interoception have been associated with reductions in empathic ability. To fully explore the relationships between interoception, alexithymia, and emotional empathy, we collected self-report and interview data in 35 youth with autism spectrum disorder and 40 typically developing controls (ages 8–17 years). The autism spectrum disorder sample had increased alexithymia and physiological hyperarousal compared to typically developing controls, but there were no group differences in interoception or emotional empathy. Alexithymia severity correlated with higher personal distress in both groups and with lower empathic concern in the autism spectrum disorder group. Within the autism spectrum disorder group, higher incidence of reports of bodily sensation when describing emotional experience correlated with lower personal distress and lower alexithymia. In addition, although empathic concern was negatively correlated with alexithymia in the autism spectrum disorder group, across groups, the alexithymia hypothesis was supported in only the personal distress domain of emotional empathy. These results suggest emotional empathy; personal distress, in particular, is not intrinsically impaired in autism spectrum disorder.Lay abstractEmpathy, the ability to understand and share the emotions of others, is a necessary skill for social functioning and can be categorized into cognitive and emotional empathy. There is evidence to suggest that individuals with autism spectrum disorder have difficulties with cognitive empathy, the ability to imagine how another person is thinking or feeling. However, it is unclear if individuals with autism spectrum disorder struggle with emotional empathy, the ability to share and feel emotions others are experiencing. Self-report and interview data were collected to explore the relationships between interoception (individuals’ self-reported awareness of sensation from their body such as thirst, heartbeat, etc.), alexithymia (an individual’s ability to describe and distinguish between their own emotions), and emotional empathy in 35 youth with autism spectrum disorder and 40 typically developing youth. Greater personal distress to others’ emotions and greater difficulty describing and recognizing self-emotions were associated with reporting fewer physical sensations in the body when experiencing emotion in the autism spectrum disorder group. The results of this study suggest that while autism spectrum disorder youth with concomitant alexithymia may experience emotional empathy differently, it should not be characterized as an absence of a capacity for emotional empathy.
      Citation: Autism
      PubDate: 2022-07-14T10:13:45Z
      DOI: 10.1177/13623613221111310
       
  • A meta-analysis and critical review of metacognitive accuracy in autism

    • Free pre-print version: Loading...

      Authors: Katie L Carpenter, David M Williams
      Abstract: Autism, Ahead of Print.
      Metacognition refers to cognitions about our own cognitions. In recent years, there has been a concerted effort to examine metacognition among autistic people. The results from these studies have produced a mixed picture, with some concluding that autistic people are just as accurate as typically developing people in judging their own cognitions and others providing evidence of reduced accuracy. The aim of this meta-analysis is to amalgamate this research to obtain a clearer picture of the evidence to date. A total of 17 studies comparing 412 individuals diagnosed with autism and 453 typically developing individuals were included in the meta-analysis. The data revealed a moderate, but heterogeneous, reduction in metacognitive accuracy among autistic individuals in comparison with non-autistic individuals. A critical review of the results suggested that, despite the overall reduction in metacognitive accuracy, performance was not universally diminished among autistic participants across studies. Accuracy may be undiminished on certain types of metacognitive task. Moreover, across all tasks, there was moderate difference in metacognitive accuracy between autistic and non-autistic children, but only a small difference in metacognitive accuracy between autistic and non-autistic adults.Lay AbstractThe ability to make accurate judgements about our own and others’ mental states has been widely researched; however, it is unclear how these two abilities relate to each other. This is important given that there is evidence that autistic individuals can have difficulty with accurately judging others’ mental states. Recent evidence suggests that some autistic individuals may also have difficulty accurately judging their own mental states. This may have an impact on various aspects of everyday life but particularly academic success, and therefore it is important that this skill is not overlooked when exploring areas of individual support. The aim of this article is to bring together the research examining autistic individual’s ability of making accurate judgements about their own mental states and to establish whether this is an area that warrants further investigation. The results from this article show that autistic individuals may have difficulty making accurate judgements about their own mental states, although this depends on the type of judgement being made. It also highlighted that while autistic children may have difficulties in some areas, these may improve by adulthood. Overall, this article shows that more research is needed to fully understand where specific difficulties lie and how they may be overcome.
      Citation: Autism
      PubDate: 2022-07-07T08:12:58Z
      DOI: 10.1177/13623613221106004
       
  • ‘The key to this is not so much the technology. It’s the individual
           who is using the technology’: Perspectives on telehealth delivery for
           autistic adults during the COVID-19 pandemic

    • Free pre-print version: Loading...

      Authors: Dorota Ali, Sarah O’Brien, Laura Hull, Lorcan Kenny, Will Mandy
      Abstract: Autism, Ahead of Print.
      The COVID-19 pandemic prompted a large-scale move to remote delivery of healthcare services. However, little research has directly explored telehealth experiences of autistic adults, a population strongly affected by health inequalities and care access barriers. This study sought telehealth experiences of 11 autistic adults (aged 27–67 years), seven family members/carers (aged 44–75) reporting about autistic people and six service providers. In-depth qualitative interviews were conducted with all participants, which were then thematically analysed. Two over-arching themes identified were technology aids communication and access – except when it doesn’t, and in/flexibility, with a number of sub-themes. The themes, on one hand, highlighted positives of telehealth delivery, including easing some aspects of communication and decreased stress and, on the other hand, negatives, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Considering autistic people experience barriers to accessing healthcare, this study highlights such barriers could be, in some instances, addressed via remote delivery, as well as possible limitations of telehealth for some autistic adults.Lay abstractThe COVID-19 pandemic meant that a lot of healthcare services had to move online, such as to video-calls, or to telephone. However, not many studies have looked at how autistic adults feel about this kind of service delivery. It is important to know this, as autistic people may have poorer health than non-autistic people, and they may also struggle to access services more than non-autistic people. This study asked 11 autistic adults (aged 27–67 years), seven family members/carers (aged 44–75) reporting about autistic adults and six service providers about their experiences of accessing or providing a telehealth service. These experiences were collected through interviews, which were then analysed through thematic analysis. Two main themes were: technology aids communication and access – except when it doesn’t, and in/flexibility. The themes pointed out some positive aspects of telehealth delivery, including improved communication and decreased stress. The themes also pointed out negative aspects of telehealth, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Because autistic people have many barriers to accessing healthcare, this study encourages researchers and healthcare providers to think about how such barriers could be addressed through telehealth, and about the possible limitations of telehealth for some autistic people.
      Citation: Autism
      PubDate: 2022-07-06T07:16:26Z
      DOI: 10.1177/13623613221108010
       
  • Clinician factors related to the delivery of psychotherapy for autistic
           youth and youth with attention-deficit hyperactivity disorder

    • Free pre-print version: Loading...

      Authors: Flora Roudbarani, Paula Tablon Modica, Brenna B Maddox, Yvonne Bohr, Jonathan A Weiss
      Abstract: Autism, Ahead of Print.
      Autistic children and adolescents are more likely than non-autistic youth to experience mental health problems, such as anxiety or depression, but less likely to receive psychotherapy to address these concerns. Recent research indicates that clinician factors, such as knowledge, attitudes, confidence and beliefs, can impact their decisions to provide care, though this work has primarily focused on adults or within the context of one kind of treatment (cognitive behaviour therapy). The current study examined psychological predictors (e.g. attitudes and confidence) of clinicians’ intention to deliver psychotherapy to autistic youth and those with attention-deficit hyperactivity disorder. Participants included 611 clinicians across publicly funded agencies in Ontario, Canada. Multiple mediation analyses revealed that clinician knowledge on mental health-related topics (e.g. core symptoms, developing treatment plans and identifying progress towards treatment goals) was associated with intention to treat autistic clients or clients with attention-deficit hyperactivity disorder, and normative pressures and attitudes partially mediated this association. Clinicians felt less likely to treat autistic clients than clients with attention-deficit hyperactivity disorder, partly because of differences in attitudes, normative pressures and knowledge. This research suggests that targeted training around autism and mental health care may be a useful initiative for agency staff.Lay abstractAutistic children and youth often experience mental health problems, such as anxiety, depression and behavioural challenges. Although there are therapy programmes that have been found helpful in reducing these issues, such as cognitive behaviour therapy, autistic children often struggle to receive adequate mental health care. Clinicians’ knowledge, attitudes, confidence and beliefs about treating mental health problems in autistic people may be related to their choices in providing psychotherapy. Across Ontario, Canada, 611 mental health clinicians, working in publicly funded agencies, completed an online survey about their experiences and opinions on delivering therapy for autistic clients compared to those with attention-deficit hyperactivity disorder. Clinician knowledge was associated with their intention to treat autistic clients or clients with attention-deficit hyperactivity disorder, partly because of their attitudes and the social pressures or values they felt. Clinicians reported feeling less intent on providing therapy to autistic youth compared to youth with attention-deficit hyperactivity disorder because of differences in their attitudes, social pressures and knowledge. This research can inform the training and educational initiatives for mental health practitioners.
      Citation: Autism
      PubDate: 2022-07-02T07:12:24Z
      DOI: 10.1177/13623613221106400
       
  • Motor stereotypies in autism spectrum disorder: Clinical randomized study
           and classification proposal

    • Free pre-print version: Loading...

      Authors: Cláudia Melo, Tiago Pinto Ribeiro, Catarina Prior, Camila Gesta, Vânia Martins, Guiomar Oliveira, Teresa Temudo
      Abstract: Autism, Ahead of Print.
      Motor stereotypies are frequently reported in individuals with autism spectrum disorder, but determinants of stereotypies remain poorly understood. In this study, a randomized sample of children with diagnosis of autism spectrum disorder was investigated to identify the prevalence and determinants of stereotypies. A total of 134 children who carried the diagnosis of autism spectrum disorder were included (aged 2.3–17.6 years; 79.1% male). Stereotypies were classified during a standardized protocol with video recording. The prevalence of stereotypies was 56.7%. Among 1198 captured stereotypies, hand/arm stereotypies were the most frequent. Thirty-five morphology patterns were identified, the most frequent being hand flapping, tapping, and jumping. In univariate analysis, an association was found between stereotypies and younger age (odds ratio = 0.74), developmental delay, or intellectual disability (odds ratio = 5.25), being nonverbal (odds ratio = 0.06), epilepsy (odds ratio = 3.89), Autism Diagnostic Interview–Revised-A score (odds ratio = 1.17), Autism Diagnostic Interview–Revised-C score (odds ratio = 1.25), and Autism Diagnostic Observation Schedule–2 score (odds ratio = 1.65). After multivariate analysis, only younger age, being nonverbal, and Autism Diagnostic Interview–Revised-A and Autism Diagnostic Observation Schedule–2 scores remained as determinants of stereotypies. The prevalence of stereotypies in autism spectrum disorder was close to the values obtained in a previous meta-analysis and seems to represent a valid value. The combination of younger age, being nonverbal, and autism severity seems to increase the odds of stereotypies.Lay abstractMotor stereotypies are one of the most frequent features in children with a diagnosis of autism spectrum disorder. They may disrupt children’s functioning and development and be a potential source of stress for families. Several factors, including sex, age, cognitive ability, and severity of autism spectrum disorder, may influence the presence and intensity of stereotypies. The present study aimed to identify the prevalence of motor stereotypies in a group of children with autism spectrum disorder. In addition, it sought to investigate whether sex, age, cognitive ability, verbal language, neurological comorbidities, and severity of autism spectrum disorder were associated with an increased probability and higher number, duration, and variability of stereotypies. A total of 134 participants aged 2.3–17.6 years underwent a clinical protocol with standardized video-recorded sessions. Stereotypies were identified and classified by two independent evaluators. The prevalence of stereotypies was 56.7%, and a total of 1198 motor stereotypies were captured. Children who were younger, nonverbal, and had higher severity of autism spectrum disorder had an increased probability of presenting stereotypies. Being nonverbal or having higher severity of autism spectrum disorder was also associated with presenting a higher number of stereotypies. Children with developmental delay, intellectual disability, or epilepsy displayed longer stereotypies, and children with developmental delay or intellectual disability additionally presented more diverse stereotypies. As part of the study, the authors present a clinical classification model, a glossary, and video samples of motor stereotypies. The findings of this study suggest that children who are younger, nonverbal, have lower cognitive ability, and have higher severity of autism spectrum disorder may have a higher burden of stereotypies. Earlier intervention and monitoring of these children have the potential to improve their long-term outcomes.
      Citation: Autism
      PubDate: 2022-06-28T12:01:51Z
      DOI: 10.1177/13623613221105479
       
  • The autistic experience of homelessness: Implications from a narrative
           enquiry

    • Free pre-print version: Loading...

      Authors: Beth Stone, Ailsa Cameron, Sandra Dowling
      Abstract: Autism, Ahead of Print.
      Emerging research suggests autistic people are disproportionately represented in homeless populations. Less is known about how autistic people experience homelessness and what prevents them from exiting homelessness. This article presents findings from a narrative enquiry investigating the link between autism and homelessness. Ten autistic adults consented to participate in narrative interviews which explored their life histories and pathways through homelessness. This article considers how participants experienced rough sleeping and sofa surfing before attempting to access hostels. It then examines how participants navigated support systems, arguing that barriers to accessing services perpetuated homelessness. Because of these barriers, some participants disengaged with services, preferring to sleep rough. The extent to which participants could be said to have ‘chosen’ homelessness is balanced with consideration of the lack of autonomy autistic adults are able to exercise over their lives. This article concludes with discussion of practical implications for services and policy in England.Lay AbstractRecent research suggests many autistic people experience homelessness. However, little is known about the types of homelessness autistic people experience and what barriers autistic people face when trying to exit homelessness. This study involved gathering life stories of autistic people who had experienced homelessness. Ten autistic participants talked about their pathways through homelessness and the difficulties they had in accessing support. After first becoming homeless, participants tended to experience rough sleeping and sofa surfing. When participants approached housing and homelessness services, they were often told they were not eligible for support. This could happen when support workers were not aware of autism, or when autism was not considered ‘severe’ enough. Overcrowding, confrontation and lack of control over routine and environment were particular issues for participants when they entered homelessness hostels. Some participants chose to sleep on the streets rather than stay in environments which increased social anxiety and sensory difficulties. This study discusses ways in which homelessness and housing services can increase accessibility and improve engagement for autistic people. It is important to increase awareness of autism while understanding that autistic people who experience homelessness may have complex needs. In addition, services need to listen to autistic people with lived experience of homelessness to decide what changes will have the most impact.
      Citation: Autism
      PubDate: 2022-06-25T12:23:23Z
      DOI: 10.1177/13623613221105091
       
  • A systematic review of the experiences of autistic young people enrolled
           in mainstream second-level (post-primary) schools

    • Free pre-print version: Loading...

      Authors: Finbar Horgan, Neil Kenny, Paula Flynn
      Abstract: Autism, Ahead of Print.
      Internationally, there is a growing trend towards the inclusion of autistic pupils within mainstream schools. However, concerns have been expressed regarding this policy roll-out preceding empirical evidence demonstrating effective outcomes for autistic students. Concerns have also been expressed regarding the absence of the voices of autistic pupils themselves within research and policy literature. This review seeks to synthesise evidence from qualitative studies relating to the experiences and perspectives of autistic young people enrolled in mainstream second-level or post-primary education. Searches were carried out on three bibliographic databases: Education Research Complete, Education Resources Information Centre and PsychInfo. One thousand sixty-three studies were identified through a combination of database and hand searches of which 33 met the inclusion criteria for the review. Data were synthesised using ‘thematic synthesis’ and the validity of included studies was assessed using the ‘Critical Appraisal Skills Programme’ (CASP) checklist. Thematic synthesis resulted in the development of three analytical themes: ‘Demands of mainstream placements’, ‘Social participation’ and ‘Impacts on the student’. Our analysis revealed that for many autistic young people, mainstream school is a complex and demanding social environment. Further research conducted in partnership with this cohort is essential as inclusive policy and practice continues to develop.Lay abstractInternationally, more autistic pupils are being educated in mainstream schools. Some people have voiced concerns that this policy roll-out is happening before examining the effective outcomes for autistic students. Concerns have also been expressed regarding a lack of the voices of autistic pupils themselves within research and policy. This study was undertaken in order to gather literature that explores the views and experiences of autistic young people in relation to their mainstream school placement at the secondary level. This study aims to summarise the existing literature and provide a new, more complete account of the school experiences of this cohort. After an extensive search, 33 studies were identified by the authors as meeting a set of inclusion criteria. All of the studies included in this review elicited the views and perspectives of at least one autistic young person regarding their mainstream secondary school placement. Upon carefully analysing these studies, the authors developed three key themes as follows: ‘Demands of mainstream placements’, ‘Social participation’ and ‘Impacts on the student’. Our analysis revealed that for many autistic young people, mainstream school is a complex and demanding social environment. Further research that prioritises the voices and perspectives of this cohort is essential as inclusive policy and practice continues to develop.
      Citation: Autism
      PubDate: 2022-06-25T12:21:23Z
      DOI: 10.1177/13623613221105089
       
  • The experiences of parents raising children with developmental
           disabilities in Ethiopia

    • Free pre-print version: Loading...

      Authors: Bethlehem Tekola, Mersha Kinfe, Fikirte Girma Bayouh, Charlotte Hanlon, Rosa A Hoekstra
      Abstract: Autism, Ahead of Print.
      The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. Parents’ lived experiences can provide insights into local conceptualizations of developmental disabilities, challenges children and their families face and their needs. This study explores the experiences of parents (14 mothers and 4 fathers) raising children with developmental disabilities in urban and rural Ethiopia using in-depth interviews. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple and intersecting struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed.Lay abstractThe experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. We interviewed 14 mothers and 4 fathers in Addis Ababa and the rural town of Butajira to explore what life is like for parents caring for children with developmental disabilities in Ethiopia. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed.
      Citation: Autism
      PubDate: 2022-06-25T12:10:08Z
      DOI: 10.1177/13623613221105085
       
  • ‘I felt like I deserved it because I was autistic’: Understanding the
           impact of interpersonal victimisation in the lives of autistic people

    • Free pre-print version: Loading...

      Authors: Amy Pearson, Kieran Rose, Jon Rees
      Abstract: Autism, Ahead of Print.
      Research suggests that there is a high prevalence of interpersonal violence and victimisation within the autistic population, and that this accounts for poor mental health outcomes. This study aimed to examine the impact of interpersonal violence and victimisation on autistic adults from their own perspective and explore what helps or hinders their recovery. In total, 102 autistic adults completed either an online survey or a spoken interview about their experiences of interpersonal violence and victimisation. We analysed the data using a thematic analysis, and found four themes: (1) The usual for autism (expectations of victimisation, experiences of othering), (2) Personhood revoked: The cost of living (being part of a neurominority, trauma, masking and burnout), (3) Unpacking the baggage (impact of hermeneutical injustice) and (4) ‘If you want to make an apple pie from scratch, you have to invent the universe first’ (structural inequality/power dynamics, support and community). Findings highlight the importance of considering the relationship between stigma and victimisation, and the relationship between trauma, masking, and burnout in autistic people. Reducing barriers to support and recovery are contingent on reducing structural inequality and providing better training about autistic people to frontline professionals.Lay abstractResearch suggests that autistic people are more likely to be hurt by someone they know (e.g. a friend or a family member) compared to non-autistic people. In this study, we wanted to know how being hurt by someone you know affects autistic people, and what might help them recover. In total, 102 autistic people took part in an interview, where we asked questions like how being hurt by people they know had made them feel and whether anyone they had asked for help had done a good job of supporting them. We analysed what they had said using thematic analysis, which involved reading what everyone said and looking for common themes. Our findings showed that a lot of autistic people think it is normal to be hurt by people you know because it has happened to them so much. This makes many autistic people feel like they need to mask parts of themselves to stay safe, but this also makes them really exhausted. It took some people a long time to realise what had happened to them was wrong, and it was hard to ask for help. People who did ask for help often had bad experiences with professionals (e.g. police) who did not know much about autistic people. They said better support would come from creating more autistic-run support groups and educating people about autism. These findings are important for working out how to help people who have been hurt by people they know.
      Citation: Autism
      PubDate: 2022-06-23T10:04:28Z
      DOI: 10.1177/13623613221104546
       
  • Theory of mind in naturalistic conversations between autistic and
           typically developing children and adolescents

    • Free pre-print version: Loading...

      Authors: Diana Alkire, Kathryn A McNaughton, Heather A Yarger, Deena Shariq, Elizabeth Redcay
      Abstract: Autism, Ahead of Print.
      Successful social interactions are assumed to depend on theory of mind—the ability to represent others’ mental states—yet most studies of the relation between theory of mind and social-interactive success rely on non-interactive tasks that do not adequately capture the spontaneous engagement of theory of mind, a crucial component of everyday social interactions. We addressed this gap by establishing a novel observational rating scale to measure the spontaneous use of theory of mind (or lack thereof) within naturalistic conversations (conversational ToM; cToM). In 50 age- and gender-matched dyads of autistic and typically developing youth aged 8–16 years (three dyad types: autistic–typically developing, typically developing–typically developing, autistic–autistic), we assessed cToM during 5-min unstructured conversations. We found that ratings on the cToM Negative scale, reflecting theory-of-mind-related violations of neurotypical conversational norms, were negatively associated with two forms of non-interactive theory of mind: visual-affective and spontaneous. In contrast, the cToM Positive scale, reflecting explicit mental state language and perspective-taking, was not associated with non-interactive theory of mind. Furthermore, autistic youth were rated higher than typically developing youth on cToM Negative, but the groups were rated similarly on cToM Positive. Together, these findings provide insight into multiple aspects of theory of mind in conversation and reveal a nuanced picture of the relative strengths and difficulties among autistic youth.Lay abstractConversation is a key part of everyday social interactions. Previous studies have suggested that conversational skills are related to theory of mind, the ability to think about other people’s mental states, such as beliefs, knowledge, and emotions. Both theory of mind and conversation are common areas of difficulty for autistic people, yet few studies have investigated how people, including autistic people, use theory of mind during conversation. We developed a new way of measuring cToM using two rating scales: cToM Positive captures behaviors that show consideration of a conversation partner’s mental states, such as referring to their thoughts or feelings, whereas cToM Negative captures behaviors that show a lack of theory of mind through violations of neurotypical conversational norms, such as providing too much, too little, or irrelevant information. We measured cToM in 50 pairs of autistic and typically developing children (ages 8–16 years) during 5-min “getting to know you” conversations. Compared to typically developing children, autistic children displayed more frequent cToM Negative behaviors but very similar rates of cToM Positive behaviors. Across both groups, cToM Negative (but not Positive) ratings were related to difficulties in recognizing emotions from facial expressions and a lower tendency to talk about others’ mental states spontaneously (i.e., without being instructed to do so), which suggests that both abilities are important for theory of mind in conversation. Altogether, this study highlights both strengths and difficulties among autistic individuals, and it suggests possible avenues for further research and for improving conversational skills.
      Citation: Autism
      PubDate: 2022-06-20T09:44:01Z
      DOI: 10.1177/13623613221103699
       
  • Predictors of expert providers’ familiarity with intervention practices
           for school- and transition-age youth with autism spectrum disorder

    • Free pre-print version: Loading...

      Authors: Chelsea M Cooper, Tamara Rosen, Hyunsik Kim, Nicholas R Eaton, Elizabeth Cohn, Amy Drahota, Lauren J Moskowitz, Matthew D Lerner, Connor M Kerns
      Abstract: Autism, Ahead of Print.
      Understanding the types of intervention practices familiar to transdisciplinary autism spectrum disorder providers may be critical to characterize and optimize “usual care” for common clinical concerns (e.g. internalizing, externalizing, and social challenges) among school- and transition-age autistic youth. We assessed if there is an underlying factor structure to expert providers’ familiarity with such practices, and if characteristics of experts (discipline, years’ experience, and school setting) and/or their clients (age and intellectual disability) predicted these factors. Fifty-three expert providers rated their familiarity with 55 practices via an online Delphi poll. Exploratory structural equation modeling identified latent factors of familiarity, which were regressed onto provider and client variables to identify predictors. Four factors emerged: two approaches (cognitive and behavioral) and two strategies (engagement and accessibility). Cognitive approaches were associated with practicing outside school settings and treating clients without intellectual disability, behavioral approaches with practicing in schools and the disciplines of clinical psychology and behavior analysis, engagement strategies with practicing outside school settings, and accessibility strategies with more years in practice. Findings suggest expert transdisciplinary autism spectrum disorder providers are familiar with many of the same approaches and that differences in knowledge are predicted by their discipline, treatment setting, experience, and work with youth with intellectual disabilities.Lay abstractSchool-age children, adolescents, and young adults with autism spectrum disorder encounter many different types of providers in their pursuit of treatment for anxiety, behavior problems, and social difficulties. These providers may all be familiar with different types of intervention practices. However, research has not yet investigated patterns in expert providers’ familiarity with different practices nor how these patterns are related to the characteristics of providers (years in practice, academic discipline, setting) and the youth (age and intellectual disability) they typically support. A panel of 53 expert transdisciplinary providers rated their familiarity with 55 intervention practices (derived from research and expert nominations) via an online Delphi poll. Advanced statistical methods were used to identify types of intervention practices with which providers were familiar, which included two approaches (cognitive and behavioral) and two strategies (engagement and accessibility). Providers who practiced outside a school setting or treated clients without intellectual disability were more familiar with cognitive approaches. Clinical psychologists, behavior analysts, and school-based providers were more familiar with behavioral approaches. Providers practicing outside school settings were also more familiar with engagement strategies, and providers with more years in practice were more familiar with accessibility strategies. These results may help families and researchers to better anticipate how services may vary depending on the types of autism spectrum disorder providers seen and work to reduce disparities in care that may result.
      Citation: Autism
      PubDate: 2022-06-20T09:39:41Z
      DOI: 10.1177/13623613221100787
       
  • Nutrient intake and adequacy in children with autism spectrum disorder:
           EPINED epidemiological study

    • Free pre-print version: Loading...

      Authors: Victoria Arija, Patricia Esteban-Figuerola, Paula Morales-Hidalgo, Cristina Jardí, Josefa Canals-Sans
      Abstract: Autism, Ahead of Print.
      This article assesses nutritional intake and adequacy in children with autism spectrum disorder (ASD), subdiagnostic autistic symptoms and children with typical development (TD). In total, 77 children diagnosed with ASD, 40 with subdiagnostic autistic symptoms and 333 children with TD were assessed. A validated food frequency questionnaire was used. Very few nutritional differences were found between ASD and TD groups. Preschool children with ASD and subdiagnostic autistic symptoms had slightly lower intake of monounsaturated fatty acids (MUFA), vitamin D and vitamin B12, and primary school children with ASD and subdiagnostic autistic symptoms had slightly higher intake of protein, cholesterol, thiamine and niacin, and a higher percentage of obesity than children with TD. All samples had an unbalanced energy intake (high in added sugars, fats and saturated fatty acids (SFAs); extremely inadequate intake (80%–100%) of vitamins D and E; high intake (50%–80%) of fibre, b-carotene (except preschool children with TD), calcium (except preschool children) and magnesium). The fact that differences between diagnoses are scarce may be related to the low level of ASD severity in this school sample.Lay abstractChildren with autism spectrum disorder (ASD) have a fivefold elevated risk of developing eating problems, which predisposes them to nutritional deficiencies. This study assesses nutritional intake and adequacy in children with ASD, subdiagnostic autistic symptoms and typically developing (TD) children. Preschool children with ASD and subdiagnostic symptoms had slightly lower intake of monounsaturated fatty acids (MUFA), vitamin D and vitamin B12. Primary school children with ASD and subdiagnostic symptoms had slightly higher intake of protein, cholesterol, thiamine and niacin, and a higher percentage of obesity than children with TD. All children had a high intake in sugars, fats and saturated fatty acids; a very highly inadequate intake of vitamins (vitamins D and E), fibre, b-carotene, calcium and magnesium; and a moderately inadequate intake of vitamin C, folate and iron. However, although all children need nutrition advice, children with ASD and subdiagnostic autistic symptoms had a poorer quality diet than those with TD.
      Citation: Autism
      PubDate: 2022-06-20T09:36:47Z
      DOI: 10.1177/13623613221098237
       
  • Predicting intervention use in autistic children: Demographic and
           autism-specific characteristics

    • Free pre-print version: Loading...

      Authors: Kim M Jonkman, Elisa Back, Sander Begeer
      Abstract: Autism, Ahead of Print.
      Autism is a heterogeneous diagnosis with symptoms that present in different ways. There is a large variety of interventions for autistic individuals. However, little is known about who chooses which specific interventions. We aimed to explore intervention prevalence and predict intervention use, based on demographic and autism-specific characteristics. This study used data on autistic children (N = 1464, aged 1–17 years) from the Netherlands Autism Register. Most children (88%) had received therapies, and about half had received medication. Intervention use was mostly related to additional factors (lower IQ, special education and co-occurring diagnoses). Children with a lower IQ received less therapies, children attending special education or with a co-occurring diagnosis received more therapies. Children in special education or with a co-occurring diagnosis were more likely to receive several types of therapy and medication. Older age, higher IQ and being female were related to more guideline (autism-specific) or mainstream (targeting co-occurring problems) therapy use. Lower parental education was related to more mainstream medication use. More severe sensory issues increased the chance of other medication use. Other autism-specific characteristics (autism severity, social skills, repetitive and restrictive behaviours) were not related to intervention use. More transdiagnostic interventions should be available for children with autism who have additional difficulties.Lay abstractAutism is a condition that is characterised by social communication difficulties and restrictive and repetitive behaviours or interests. Autism can present in many different ways and various interventions are available. Some interventions are conventional, and they are recommended to be used for children with autism (guideline therapies) or for other disorders such as anxiety or attention-deficit hyperactivity disorder (mainstream therapies or medication), while others are less conventional (other therapies or medication, they are discouraged, unknown or alternative). Little is known about who chooses which intervention. This study found that most autistic children use some kind of intervention. Children who attend special education or have an additional diagnosis (other than autism) tend to receive more therapies, while children with a lower IQ receive fewer therapies. Older children, children with a higher IQ and girls are more likely to use conventional (mainstream or guideline) therapies. Children whose parents have a lower educational level are more likely to have used conventional medication. Whereas, children with more sensory issues (e.g. sensitivity to sound, smell or movement) were more likely to have used unconventional medication. This study found that other autism-related characteristics such as the number of autism symptoms, social skills and repetitive and restrictive behaviours were not related to the interventions used. More treatments focussed on multiple problems should be available for children with autism who have additional difficulties.
      Citation: Autism
      PubDate: 2022-06-13T09:39:44Z
      DOI: 10.1177/13623613221102748
       
  • One size does not fit all for parent-mediated autism interventions: A
           randomized clinical trial

    • Free pre-print version: Loading...

      Authors: Megan Y Roberts, Bailey J Sone, Maranda Jones, Jeffrey Grauzer, Laura Sudec, Yael S Stern, Elaine Kwok, Molly Losh, Aaron Kaat
      Abstract: Autism, Ahead of Print.
      Coaching parents to use language facilitation strategies improves long-term language outcomes for autistic children. To optimize parent-mediated interventions, more studies need to explore factors that influence parents’ learning. This study involved 119 autistic children (18–48 months) and their biological mothers enrolled in a single-site, factorial randomized clinical trial. Mothers were taught to use one of two types of language facilitation strategies (responsive or directive) during eight weekly, hour-long instructional sessions. We explored the impact of (a) type of language facilitation strategy, (b) maternal Broad Autism Phenotype (subclinical traits of autism spectrum disorder), and (c) preintervention strategy use on mothers’ outcomes measured immediately and 3 months after intervention sessions. At postintervention, mothers who learned responsive strategies demonstrated significantly greater use of taught strategies than mothers who learned directive strategies (d = 0.90, 95% CI =[0.47, 1.32]). Mothers’ use of taught strategies did not differ by Broad Autism Phenotype status. However, a significant two-way interaction was found between preintervention strategy use and Broad Autism Phenotype status on taught strategy use (F(1, 107) = 6.04, p = 0.016, ΔR2 = 0.053). Findings suggest that strategy type, maternal Broad Autism Phenotype status, and preintervention strategy use may be important factors to be considered to individualize parent-mediated interventions.Lay AbstractParent-mediated interventions support parents’ use of language facilitation strategies to improve their autistic child’s communication and language development. To improve the effectiveness of parent-mediated interventions, it is important to individualize interventions. This article evaluates how different components of parent-mediated interventions and mothers’ learning styles influence the effectiveness of the intervention. In a randomized clinical trial, mothers were taught to use one of two types of language facilitation strategies: responsive and directive. Mothers’ learning styles were characterized by the Broad Autism Phenotype (BAP) and their natural tendency to use language facilitation strategies before intervention. Findings suggest that it was easier for all mothers (irrespective of learning style) to use responsive strategies compared to directive strategies. In addition, mothers with learning styles that were not consistent with the BAP were more likely to benefit from the intervention if they did not naturally use strategies before the intervention. In contrast, mothers with learning styles that were consistent with the BAP were more likely to benefit from the intervention if they did naturally use strategies before the intervention. Teaching mothers to use responsive strategies results in greater strategy use. Consideration of BAP and mothers’ natural use of language facilitation strategies may inform intervention individualization.
      Citation: Autism
      PubDate: 2022-06-13T01:31:09Z
      DOI: 10.1177/13623613221102736
       
  • Consensus statements on optimal adult post-autism diagnosis support and
           services: Delphi process following a UK survey of autistic adults,
           relatives and clinicians

    • Free pre-print version: Loading...

      Authors: Sarah Wigham, Barry Ingham, Ann Le Couteur, Colin Wilson, Ian Ensum, Jeremy R Parr
      Abstract: Autism, Ahead of Print.
      Opportunities for adults to access support following a clinical diagnosis of autism are limited. This study investigated perspectives of autistic adults, relatives and clinicians regarding characteristics of optimal adult autism post-diagnosis support and services. In Stage 1, key stakeholders were surveyed about recent experiences of UK adult autism post-diagnostic services immediately following assessment/up to 12 months afterwards. Information gathered from Stage 1 was used to devise a set of statements describing optimal post-autism diagnostic support/service characteristics. In Stage 2 statements were presented to clinicians in a modified Delphi process. Data analyses were non-parametric and descriptive. Three hundred forty-three autistic adults and 45 relatives completed the Stage 1 surveys. Thirty-five clinicians completed a parallel survey. Just over half of adults and relatives reported receiving a follow-up appointment. Fewer than 40% of autistic people received support/services 12 months after diagnosis. Eleven statements describing optimal post-autism diagnostic support/service provision were developed and consensus among clinicians was reached on all. Autistic adults, relatives and clinicians described some aspects of post-autism diagnosis support and services positively; however, there were significant opportunities for improvement. The study findings can be used to develop current UK post-diagnosis support and services and may be relevant internationally.Lay AbstractResearch has identified types of support helpful to autistic people, for example, physical and mental health interventions, psycho-education, peer support, developing positive identities and affiliation with social groups. However, accessing suitable post-autism diagnosis support and services is extremely difficult. We asked autistic adults, relatives and clinicians about their experiences of receiving and delivering post-autism diagnosis support/services. In Stage 1, 343 autistic adults and 45 relatives completed a survey. They answered questions about their experiences of UK autism post-diagnosis support/services for adults within 12 months after receiving a diagnosis. Thirty-five clinicians completed a similar survey. Just over half of adults and relatives said there was a follow-up appointment or discussion about support after diagnosis. Fewer than 40% received any support/services in 12 months after diagnosis. We used information from the surveys to create 11 statements describing characteristics of appropriate adult post-autism diagnosis support/services. In Stage 2, we asked clinicians for their views on the statements – they agreed with all of them. For example, those adults are offered an additional follow-up meeting after diagnosis and have access to mental and physical health services. We shared results with autistic adults, relatives and clinicians at two events. Some autistic adults, relatives and clinicians were positive about post-autism diagnosis support/services. However, they described many areas for improvement. The study findings can be used to define, develop and improve the types of adult post-diagnosis support services.
      Citation: Autism
      PubDate: 2022-06-07T07:22:20Z
      DOI: 10.1177/13623613221097502
       
  • A longitudinal study of the mental health of autistic children and
           adolescents and their parents during COVID-19: Part 2, qualitative
           findings

    • Free pre-print version: Loading...

      Authors: Kathryn Asbury, Umar Toseeb
      Abstract: Autism, Ahead of Print.
      In Part 1 of this UK-based study, across four timepoints between March and October 2020, autistic children and young people showed higher levels of parent-reported depression and anxiety symptoms than those with other special educational needs and disabilities. In this study, we draw on qualitative data from 478 parents/carers of autistic pupils and those with other special educational needs and disabilities to conduct a longitudinal qualitative content analysis examining stability and change in the mental health of these young people, and their parents/carers, during the first 6 months of the COVID-19 pandemic. Worry and psychological distress were dominant categories at all timepoints and we noted that, in line with quantitative findings, worry in autistic pupils stayed stable over time but decreased for those with other special educational needs and disabilities. The third dominant category was wellbeing and we saw evidence that removing demands, especially the demand to attend school, was a driver of wellbeing for a significant minority of pupils, particularly autistic pupils, and their parents/carers. Overall, we observed no differences in mental health experiences between the two groups of parents, also mirroring quantitative findings.Lay abstractWe know that autistic children and young people, and their caregivers, are at increased risk of mental ill health. We asked whether the first 6 months of COVID-19 exacerbated that risk, and whether the implications were different for autistic pupils and their caregivers, than for those with other special educational needs and difficulties. In a linked paper, we found that caregivers of autistic pupils reported higher levels of depression and anxiety symptoms in their children than parents of children with other special educational needs and difficulties (Toseeb & Asbury, 2022). For pupils with other special educational needs and difficulties, their parent-reported anxiety symptoms eased over time while remaining high throughout for autistic pupils. There were no differences in mental health and wellbeing between caregivers of autistic pupils and those with other special educational needs and difficulties. Here, we used parents’ written descriptions of their own and their child’s mental health during the first 6 months of COVID-19 to explore these linked findings in greater depth. We identified strong evidence of worry and distress for all, but most prominently autistic children and young people. Our finding that worry and distress declined over time for pupils with other special educational needs and difficulties, but not for autistic pupils, was supported and we observed a few differences between caregivers. We also found evidence of wellbeing throughout the sample, and examples of some (mainly autistic) pupils benefitting from a reduction in demands (e.g. going to school). This has implications for our understanding of the school experience for autistic pupils. Findings suggest that the mental health of autistic children and young people may have been disproportionately affected during the first 6 months of COVID-19 and that careful consideration of optimal support, from both health and education perspectives, is vital.
      Citation: Autism
      PubDate: 2022-06-07T06:11:14Z
      DOI: 10.1177/13623613221086997
       
  • A longitudinal study of the mental health of autistic children and
           adolescents and their parents during COVID-19: Part 1, quantitative
           findings

    • Free pre-print version: Loading...

      Authors: Umar Toseeb, Kathryn Asbury
      Abstract: Autism, Ahead of Print.
      Autistic children and adolescents and their parents are likely to have been disproportionally affected during the COVID-19 pandemic. There has been little focus on how the mental health of these vulnerable families developed during the pandemic and how it compared to those with other special educational needs and disabilities. Questionnaires were completed by a maximum of 527 parents/carers about their own and their child’s mental health at one or more time points between 23 March 2020 (at the onset of the first lockdown) and 10 October 2020 (when schools fully reopened for face-to-face teaching). Multi-level regression models were fitted to the data. Autistic young people had more depression and anxiety symptoms compared to young people with other special educational needs and disabilities throughout the study period. As lockdown progressed and schools subsequently reopened for face-to-face teaching, anxiety levels decreased for young people with special educational needs and disabilities but not for autistic young people, whose anxiety levels remained stable throughout. Depression symptoms, however, remained stable for both groups during this period as did parents’/carers’ psychological distress and well-being. These findings shed new light on the likely disproportionate effect of the COVID-19 pandemic on anxiety levels in autistic young people.Lay abstractAutistic children and adolescents, and their parents/carers, tend to experience more symptoms of anxiety and depression compared to those with other special educational needs and disabilities. The rapid change in society as a result of the COVID-19 pandemic is likely to have disproportionately affected autistic young people and their parents/carers. We investigated how the mental health of autistic young people, and their parents/carers, developed during the first lockdown in the United Kingdom and how it changed once schools fully reopened for face-to-face teaching approximately 6 months later. Parents/carers completed online standardised questionnaires about their own and their child’s mental health at four time points between March 2020 and October 2020. We found that, throughout this period, autistic young people experienced more symptoms of anxiety and depression compared to those with other special educational needs and disabilities. Anxiety levels decreased as lockdown progressed and schools reopened for face-to-face teaching but only for those with other special educational needs and disabilities. For autistic young people, both anxiety and depression symptoms remained high throughout. There were no differences in the mental health of parents/carers of autistic children compared to those with other special educational needs and disabilities. These findings suggest that the mental health of autistic children and adolescents is likely to have been disproportionately affected during and after the first lockdown in the United Kingdom. In the second part of this article (Asbury & Toseeb, 2022), we attempt to explain these trends using qualitative data provided by parents during the same period.
      Citation: Autism
      PubDate: 2022-06-07T06:11:13Z
      DOI: 10.1177/13623613221082715
       
  • Autism as a difference or a disorder' Exploring the views of
           individuals who use peer-led online support groups for autistic partners

    • Free pre-print version: Loading...

      Authors: Laura Foran Lewis
      Abstract: Autism, Ahead of Print.
      Approximately one-third of autistics report intimate relationship experience, but few studies have explored neuromixed relationships from the perspectives of non-autistic partners. Non-autistic partners increasingly use peer-led online groups to seek support. The purpose of this study was to capture a theory that reflects the basic social experience of individuals who use these support groups using classic Glaserian grounded theory methodology. Online interviews were conducted with 162 non-autistics who believed that they were in neuromixed relationships. Data were concurrently collected and analyzed using constant comparative analysis. Participants described varying views of autism, from a difference to a disorder, which defined the context of their relationships. Five relationship profiles emerged—mutual partnership: viewed partners as = companionship: viewed partners as friends but lacked a deeper connection; caregiving: viewed partners as dependents and compared relationships to parent–child dyads; detachment: viewed relationships as broken beyond repair and isolated selves from partners; and discriminatory: believed and circulated negative generalizations about autism. Many participants who were dissatisfied in their relationships shared that their partners were not formally evaluated and did not self-identify as autistic. Future research should explore ways that autism labels are (mis)applied by the general public based on negative stereotypes about autism.Lay abstractIndividuals who use peer-led online support groups for partners of autistics describe diverse views of autism, with some describing autism as a difference and others describing it as a disorder. I conducted online interviews with 162 non-autistics who believed they were in relationships with autistics and who participated in online support groups on social media. I analyzed their responses by constantly comparing each interview to previous interviews to develop a theory about their social experiences. As many as one-third of autistics participate in romantic relationships, and many of their partners seek support through groups on social media. Few studies explore what it is like to be a non-autistic person who is in a relationship with an autistic person. The way that participants viewed autism influenced the way that they viewed themselves, their partners, and their relationships. Many participants who were dissatisfied in their relationships shared that they believed their partners were autistic, but their partners had never been formally evaluated and did not self-identify as autistic. Future research should explore ways that autism labels are (mis)applied by the general public based on negative stereotypes about autism.
      Citation: Autism
      PubDate: 2022-06-02T09:36:41Z
      DOI: 10.1177/13623613221097850
       
  • Sex differences in predictors and outcomes of camouflaging: Comparing
           diagnosed autistic, high autistic trait and low autistic trait young
           adults

    • Free pre-print version: Loading...

      Authors: Victoria Milner, Will Mandy, Francesca Happé, Emma Colvert
      Abstract: Autism, Ahead of Print.
      Many autistic individuals camouflage socially atypical behaviours. Evidence suggests autistic females camouflage more than autistic males. Although camouflaging may confer some benefits, it is also associated with negative outcomes including poorer mental health and well-being. Those with high autistic traits but no clinical diagnosis are not seldom included in camouflaging research, therefore we cannot ascertain whether camouflaging plays a role in the underdiagnosis of autistic females. Data from young adults with a diagnosis of autism (n = 78), high autistic traits but no diagnosis (n = 177) or low autistic traits (n = 180) revealed autistic females reported camouflaging significantly more than other groups. Males and females with low autistic traits reported significantly lower camouflaging than high trait and diagnosed groups. Loneliness was a key predictor of camouflaging for the diagnosed group only. Camouflaging was found to predict lower psychological quality of life for the diagnosed group, and lower social quality of life for the high trait and low trait groups. Overall, findings indicated that, although all groups reported camouflaging, the motivations for doing so may be different for diagnosed autistic individuals. It is important for stakeholders and society to improve understanding of autism and acceptance of atypical behaviour to alleviate possible negative outcomes associated with camouflaging.Lay AbstractMany autistic people use strategies that help them adapt in social situations and hide behaviours that may seem different to non-autistic individuals – this is called camouflaging. Camouflaging may help autistic people fit in socially; however, it might also lead to poorer well-being. It has been suggested that autistic females camouflage more than autistic males. This article explored differences between males and females who have an autism diagnosis, have characteristics of autism but no diagnosis and those with few autistic characteristics. It is important to include these groups as camouflaging may make it more difficult to get an autism diagnosis and therefore make it less likely a person will receive support. We found that autistic women camouflaged more than all other groups. The group with few autistic characteristics (males and females) camouflaged the least. Loneliness was found to be a possible reason for camouflaging for the diagnosed autistic group only. In terms of outcomes related to camouflaging, it was found that those who camouflaged most had a lower quality of life; this was true of all groups. This tells us that there may be different reasons to camouflage, and different outcomes related to camouflaging for those with many characteristics of autism (including those with a diagnosis), and those with few. It is important that clinicians, teachers, parents and other stakeholders are aware of the negative outcomes associated with camouflaging so that more support can be provided for those who need it.
      Citation: Autism
      PubDate: 2022-06-02T08:41:48Z
      DOI: 10.1177/13623613221098240
       
  • Prospective relationship between autistic traits and nutrient intakes
           among Japanese children: Results of the Shika study

    • Free pre-print version: Loading...

      Authors: Hiromasa Tsujiguchi, Akinori Hara, Sakae Miyagi, Kim Oanh Pham, Keita Suzuki, Thao Thi Thu Nguyen, Yasuki Ono, Yasuhiro Kambayashi, Yukari Shimizu, Haruki Nakamura, Fumihiko Suzuki, Aki Shibata, Koichi Hayashi, Hirohito Tsuboi, Hiroyuki Nakamura
      Abstract: Autism, Ahead of Print.
      Increased food selectivity among children with autism spectrum disorder may lead to nutritional inadequacy. We designed this study to examine the prospective relationship between autistic traits in children and subsequent nutrient intake in later childhood and whether this relationship changes over time. We utilized longitudinal data obtained at two time points from the Shika study, an ongoing population-based study conducted in a rural area of Japan. Participants were 759 Japanese children aged between 7 and 12 years at baseline and between 10 and 15 years in the follow-up. The results obtained showed relatively lower intakes of sodium, calcium, magnesium, iron, vitamin D, vitamin B2, and vitamin B12 among children with than without autistic traits. Interactions were observed among autistic traits and time points for iron, vitamin B2, folic acid, and pantothenic acid. The results of this study suggest the importance of screening the nutrient intake of children with autistic traits across childhood in order to reduce the risk of restricted intake.Lay AbstractIt is known about food selectivity among children with autism spectrum disorder. However, the nutritional inadequacy among children with ASD is not clear. Especially, long-term evaluation has not been studied. We examined the prospective relationship between autistic traits in children and subsequent nutrient intake in later childhood. We utilized data obtained at two time points from a study conducted in Japan. Participants were 759 Japanese children aged between 7 and 12 years at baseline and between 10 and 15 years in the follow-up. The results showed relatively lower intakes of sodium, calcium, magnesium, iron, vitamin D, vitamin B2, and vitamin B12 among children with than without autistic traits. Relatively lower intake of minerals and vitamins in children with autistic traits is more evident in later childhood. The results suggest the importance of screening the nutrient intake of children with autistic traits across childhood.
      Citation: Autism
      PubDate: 2022-06-02T08:37:45Z
      DOI: 10.1177/13623613221097487
       
  • Learning from the experts: Evaluating a participatory autism and universal
           design training for university educators

    • Free pre-print version: Loading...

      Authors: TC Waisman, Zachary J Williams, Eilidh Cage, Siva Priya Santhanam, Iliana Magiati, Patrick Dwyer, Kayden M Stockwell, Bella Kofner, Heather Brown, Denise Davidson, Jessye Herrell, Stephen M Shore, Dave Caudel, Emine Gurbuz, Kristen Gillespie-Lynch
      Abstract: Autism, Ahead of Print.
      Autistic students experience strengths and challenges that can impact their full inclusion in higher education, including stigma. A participatory team of autistic and non-autistic scholars developed an autism and universal design (UD) training. This participatory approach centered the voices of autistic collaborators in training design and evaluation. Ninety-eight educators from 53 institutions across five countries completed assessments before training (pre-tests), 89 completed post-tests (after training), and 82 completed maintenance assessments (a month after post-test). Pre-test autism stigma was heightened among males, educators with less autism knowledge, and those who reported heightened social dominance orientation. Autism knowledge, autism stigma, and attitudes toward UD improved with training. Improvements remained apparent a month after post-test but were somewhat attenuated for knowledge and stigma. To the best of our knowledge, this is the first evidence of maintenance of benefits of an autism training over time. Participants’ main reason for enrolling in the study was to gain a better understanding about neurodiversity. Feedback indicates that this goal was reached by most with the added benefit of gaining understanding about UD. Results suggest that interest in one type of diversity (e.g. autism) can motivate faculty to learn UD-aligned teaching strategies that benefit diverse students more generally.Lay abstractAutistic university students have many strengths. They also go through difficulties that professors may not understand. Professors may not understand what college life is like for autistic students. They might judge autistic students. A team of autistic and non-autistic researchers made a training to help professors understand autistic students better. This training also gave professors ideas to help them teach all of their students. Ninety-eight professors did an online survey before the autism training. They shared how they felt about autism and teaching. Before our training, professors who knew more about autism appreciated autism more. Professors who thought people should be equal and women also appreciated autism more. Then, 89 of the professors did our training and another survey after the training. This helped us see what they learned from the training. They did one more survey a month later. This helped us see what they remembered. Our training helped professors understand and value autism. It also helped them understand how they can teach all students better. The professors remembered a lot of what we taught them. This study shows that a training that autistic people helped make can help professors understand their autistic students better.
      Citation: Autism
      PubDate: 2022-06-02T08:34:38Z
      DOI: 10.1177/13623613221097207
       
  • Suicidal ideation and intentional self-inflicted injury in autism spectrum
           disorder and intellectual disability: An examination of trends in youth
           emergency department visits in the United States from 2006 to 2014

    • Free pre-print version: Loading...

      Authors: Paige E Cervantes, Derek S Brown, Sarah M Horwitz
      Abstract: Autism, Ahead of Print.
      Substantial efforts have been dedicated to understanding, assessing, and managing suicide risk in youth broadly. However, little attention has been focused specifically on autistic youth and youth with intellectual disability. Because emergency departments are an essential point of suicide-related care, we used the National Emergency Department Sample databases to explore differences in prevalence of U.S. emergency department visits with a suicidal ideation or intentional self-inflicted injury ICD-9 diagnostic code by autistic youth, youth with intellectual disability, and youth without these diagnoses (i.e. the comparison group). Emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis were more prevalent in autistic youth (5.1%) and youth with intellectual disability (6.6%) than in the comparison group (1.2%). Similar results were found when examining visits with a suicidal ideation diagnosis and with an intentional self-inflicted injury diagnosis separately. Prevalence of these emergency department visits increased more from 2006 to 2014 in autistic youth and in youth with intellectual disability than in the comparison group and were correlated with common and distinct sociodemographic and clinical factors across groups. Results suggest autistic youth and youth with intellectual disability may be uniquely vulnerable to suicide risk, highlighting the urgency of addressing suicidality and self-harm in these groups, particularly within emergency department settings.Lay abstractYouth suicide is a major problem in the United States and globally, but little is known about suicide risk in autistic youth and youth with intellectual disability specifically. Using data from the National Emergency Department Sample, which is the largest database of emergency department visits in the United States, we found that emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis were more common in autistic youth and youth with intellectual disability than in youth without these diagnoses (i.e. the comparison group). This was true when examining both suicidal ideation diagnoses and intentional self-inflicted injury diagnoses at emergency department visits. In addition, the number of emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis increased more from 2006 to 2014 in autistic youth and youth with intellectual disability compared with the comparison group. We also found both similarities and differences when examining factors, such as age, sex, and co-occurring mental health conditions, related to emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis across groups that may be helpful for understanding suicide risk. It is urgent that we improve our understanding, assessment, and treatment of suicidality and self-harm in these groups through more research and clinical efforts.
      Citation: Autism
      PubDate: 2022-05-24T10:23:33Z
      DOI: 10.1177/13623613221091316
       
  • Longitudinal impact of parents’ discrimination experiences on
           children’s internalizing and externalizing symptoms: A 2-year study of
           families of autistic children

    • Free pre-print version: Loading...

      Authors: Kevin Ka Shing Chan, Donald Chi Kin Leung, Winnie Tsz Wa Fung
      Abstract: Autism, Ahead of Print.
      The present study examined the longitudinal associations of parents’ discrimination experiences with children’s internalizing and externalizing symptoms among families of autistic children and tested whether these associations would be mediated by parental depression, harsh parenting, and coparenting conflict. On three occasions across 2 years (i.e. T1, T2, and T3), 441 parents of autistic children from Hong Kong, China, provided questionnaire data. Path analyses showed that parents’ discrimination experiences at T1 had significant direct effects on parental depression, harsh parenting, and coparenting conflict at T2, which, in turn, had significant direct effects on children’s internalizing and externalizing symptoms at T3. Bootstrap analyses further demonstrated that parents’ discrimination experiences at T1 had significant indirect effects on children’s internalizing and externalizing symptoms at T3 via parental depression, harsh parenting, and coparenting conflict at T2. Theoretically, our findings elucidate how parents’ discrimination experiences may longitudinally heighten children’s internalizing and externalizing symptoms by adversely affecting parental well-being and parent–child and inter-parental relationships. Practically, our findings highlight the importance of designing and implementing community-based stigma reduction programs and family-based stigma coping interventions to reduce parents’ discrimination experiences and associated adverse outcomes on well-being, parenting, marriage, and child development.Lay abstractAlthough many parents of autistic children are routinely discriminated against, the potential impact of this discrimination on their parenting processes and child-rearing outcomes has seldom been investigated. The present study addressed this gap in the literature by examining the longitudinal associations of parents’ discrimination experiences with children’s internalizing and externalizing symptoms among families of autistic children and testing whether these associations would be mediated by parental depression, harsh parenting, and coparenting conflict. On three occasions across 2 years (i.e. T1, T2, and T3), 441 parents of autistic children from Hong Kong, China, provided questionnaire data. Path analyses showed that parents’ discrimination experiences at T1 had significant direct effects on parental depression, harsh parenting, and coparenting conflict at T2, which, in turn, had significant direct effects on children’s internalizing and externalizing symptoms at T3. Bootstrap analyses further demonstrated that parents’ discrimination experiences at T1 had significant indirect effects on children’s internalizing and externalizing symptoms at T3 via parental depression, harsh parenting, and coparenting conflict at T2. Our findings have important theoretical contributions and significant practical implications. Theoretically, our findings elucidate how parents’ discrimination experiences may longitudinally heighten children’s internalizing and externalizing symptoms by adversely affecting parental well-being and parent–child and inter-parental relationships. Practically, our findings highlight the importance of designing and implementing community-based stigma reduction programs and family-based stigma coping interventions to reduce parents’ discrimination experiences and associated adverse outcomes on well-being, parenting, marriage, and child development.
      Citation: Autism
      PubDate: 2022-05-19T04:37:19Z
      DOI: 10.1177/13623613221093110
       
  • Examining clinical characteristics of autism and links with parent
           perceptions of sibling relationship quality

    • Free pre-print version: Loading...

      Authors: Alana J McVey, Quinn Liu, Saashi A Bedford, Anat Zaidman-Zait, Peter Szatmari, Isabel M Smith, Tracy Vaillancourt, Lonnie Zwaigenbaum, Teresa Bennett, Eric Duku, Mayada Elsabbagh, Stelios Georgiades, Connor M Kerns
      Abstract: Autism, Ahead of Print.
      Research regarding autistic children’s sibling relationship quality is mixed, although some literature suggests poorer quality compared to children with other disabilities or who are neurotypical. Little is known about how the clinical characteristics of autistic children relate to parent perceptions of sibling relationship quality. We drew data from a subsample of 119 children on the autism spectrum, ages 10–11 years, from an ongoing longitudinal study. Hierarchical multiple regressions tested the extent to which children’s autism symptoms, behavioral difficulties, and communication abilities related to four domains of parent-rated sibling relationship quality. We also examined communication ability as a moderator of the effect of behavioral difficulties on parent-rated sibling relationship quality. More severe autism symptoms were associated with lower levels of conflict and rivalry, whereas higher communication ability was related to more relative status/power, but also conflict. Communication ability moderated the effect of behavioral difficulties such that behavioral difficulties were more closely associated with less warmth/closeness when children had weaker communication skills; behavioral difficulties were not significantly associated with other domains of sibling relationship quality. Findings underscore the importance of considering clinical characteristics and multiple domains of relationship quality to better understand how parents view the relationships between autistic children and their siblings.Lay abstractSibling relationship quality is important for the well-being of children on the autism spectrum and their siblings. Little is known, however, about how varied behavior and abilities of children on the autism spectrum may be associated with parent perceptions of domains of sibling relationship quality. We drew data from a subsample of 119 children on the autism spectrum (ages 10–11 years), participating in an ongoing longitudinal study. We looked at how three clinical characteristics (autism symptoms, behavioral difficulties, and communication ability) related to four areas of parent-reported sibling relationship quality (warmth/closeness, conflict, relative status/power, and rivalry). We also examined whether the strength of the association between behavioral difficulties and parent-reported sibling relationship quality was influenced by communication ability. We found that more severe autism symptoms were associated with less conflict and rivalry, and higher communication ability was associated with more relative status/power. We also found that children on the autism spectrum with more behavioral difficulties and weaker communication ability had less warmth/closeness in their sibling relationships. Our findings highlight that it is important to consider autism symptoms, behavioral difficulties, and communication ability, as well as multiple domains of relationship quality, to better understand how parents view the relationships between autistic children and their siblings. Clinically, methods for improving sibling relationships may include teaching conflict resolution strategies to children on the autism spectrum with stronger communication abilities and their siblings, and fostering sibling connection for those with lower communication abilities.
      Citation: Autism
      PubDate: 2022-05-05T06:53:30Z
      DOI: 10.1177/13623613221094672
       
  • Autistic children who create imaginary companions: Evidence of social
           benefits

    • Free pre-print version: Loading...

      Authors: Paige E Davis, Jessica Slater, David Marshall, Diana L Robins
      Abstract: Autism, Ahead of Print.
      Past research shows that autistic children can and do create imaginary companions (ICs), and that these ICs resemble those that neurotypical children create. Neurotypical children creating ICs have been found to have significantly more developed theory of mind (ToM) and social understanding among other enhanced social cognitive skills. The study set out to determine if this finding applies to autistic children. Parents of 124 (38 female) autistic children, ages from 5 to –12 years old, completed questionnaires evaluating communication, social understanding, and social skills. Children with ICs had significantly higher ToM and social skills scores regardless of their communication abilities. Findings suggest that there is a variability in ToM and social skills in autistic children in reference to an IC play profile. Results are discussed in terms of direction of causality and lab-based investigations.Lay abstractResearch on neurotypical children with imaginary friends has found that those with imaginary friends have better social skills and are more able to think about how other people’s minds work compared to children without imaginary friends. Research shows that some autistic children also create imaginary friends. This article is the first to look at whether or not autistic children with imaginary friends have stronger social skills and an improved ability to think about others’ minds than those without imaginary friends. We asked parents to report about their children aged 5 to 12. Finding almost half reported their child had an imaginary friend, a much larger number than previous research with younger children. Our findings also suggested that autistic children with imaginary friends were better able to understand others’ minds and had stronger social skills than their peers without imaginary friends. The children’s language ability did not influence this. The findings of this study add to the evidence that with respect to the creation imaginary friends and their potential benefits, the play profiles of autistic children are similar to the general population. It also provides more evidence that the understanding of others’ minds is not all or nothing in autism and gives reason for researchers to investigate whether the causes of these differences are the same or different for autistic children.
      Citation: Autism
      PubDate: 2022-05-03T06:36:09Z
      DOI: 10.1177/13623613221092195
       
  • Reasons for alcohol use and non-use by underage U.S. autistic youth: A
           qualitative study

    • Free pre-print version: Loading...

      Authors: Emily F Rothman, Laura Graham Holmes, Dani Brooks, Shari Krauss, Reid Caplan
      Abstract: Autism, Ahead of Print.
      This study describes the views and experiences of autistic youth about alcohol, including reasons for use and nonuse. We conducted 40 semi-structured interviews with autistic youth aged 16–20 years old. Of these, 20 had consumed alcohol in the past year. We used an inductive content-based analysis approach. Youth were deliberate about their choices to use, or abstain from, alcohol. Some conducted their own background research on the effects of alcohol, while others took a very measured approach to drinking and paced their alcohol consumption during drinking episodes with care. Reasons not to drink included fear of developing alcohol addiction, not liking the taste of alcohol, concern about alcohol interacting with prescribed medications, as well as the desire to avoid hangover, disinhibition, or other negative effects. On the contrary, youth had some positive alcohol expectancies: non-autistic people are more accepting when drinking, alcohol helps autistic people cope with problems, irritability, boredom, and sensory processing challenges, and helps them fit in. Results reveal that alcohol use disorder in autistic adults could have its roots in underage experiences that provide temporary relief from social anxiety, feeling socially isolated, and challenges with sensory processing. The development of evidence-based youth alcohol prevention strategies for autistic youth may be an important next step.Lay abstractWhat is already known about the topic' Hazardous alcohol use is when a person’s drinking puts them at increased risk for negative events (e.g. health problems or car crashes). Some studies show that autistic people may be at greater risk for hazardous alcohol use than non-autistic people, while other studies have found that hazardous alcohol use is less common among autistic people than non-autistic people. We need to learn why autistic underage youth choose to drink alcohol or not. The goal of this study was to learn from US autistic youth about their attitudes and behavior related to alcohol. Forty autistic youth aged 16–20 years old were interviewed.What this article adds' Youth described several reasons why they choose to drink alcohol, including feeling like non-autistic people are more accepting when drinking, that it puts them in a less irritable or bored mood, helps them cope with problems, and helps them fit in. Reasons for not drinking alcohol include worries about becoming addicted, medication interactions, not liking the taste, fear of experiencing hangover and other health problems, and concern about acting foolish when drunk.Implications for practice, research, or policy Results reveal that hazardous alcohol use in autistic adults could have its roots in underage experiences that give autistic youth temporary relief from social anxiety, feeling lonely, and challenges with sensory processing. Right now, there are no evidence-based alcohol prevention programs in the United States for autistic people. One or more such programs may be needed. The results from this study could be used to adapt existing programs for non-autistic youth to the unique needs and risk factors of autistic youth.
      Citation: Autism
      PubDate: 2022-05-02T02:16:25Z
      DOI: 10.1177/13623613221091319
       
  • Longitudinal development of language and fine motor skills is correlated,
           but not coupled, in a childhood atypical cohort

    • Free pre-print version: Loading...

      Authors: Marie K Deserno, Delia Fuhrmann, Sander Begeer, Denny Borsboom, Hilde M Geurts, Rogier A Kievit
      Abstract: Autism, Ahead of Print.
      Autism is often associated with early developmental delays in language and motor skills. However, little is known about the complex dynamic processes that drive the co-development of such early difficulties. The aim of the present study was to model the parallel growth of language and motor skills in a cohort of infants and to explore differences between infants with typical development and those with atypical development. Receptive and expressive language and fine motor skills were repeatedly assessed in a group of 239 infants (7 months at t1 and 36 months at t4) from the British Autism Study of Infant Siblings sample. Latent Growth Curve Analysis was applied to investigate the mutualistic coupling of longitudinal changes in these domains. Our results showed highly correlated slopes but we did not find an association between baseline scores in one domain and rates of change in the other (i.e. coupling). In the later diagnosed group, we found that scores at baseline and rates of change were more variable.Lay abstractMore and more members of the autistic community and the research field are moving away from the idea that there will be a single biological or cognitive explanation for autistic characteristics. However, little is known about the complex dynamic processes that could explain why early difficulties in the language and motor domain often go hand-in-hand. We here study how language and motor skills develop simultaneously in the British Autism Study of Infant Siblings cohort of infants, and compare the way they are linked between children with and without developmental delays. Our results suggest that improvements in one domain go hand-in-hand with improvements in the other in both groups and show no compelling evidence for group differences in how motor skills relate to language and vice versa. We did observe a larger diversity in motor and language skills at 6 months, and because we found the motor and language development to be tightly linked, this suggests that even very small early impairments can result in larger developmental delays in later childhood. Greater variability at baseline, combined with very strong correlations between the slopes, suggests that dynamic processes may amplify small differences between individuals at 6months to result into large individual differences in autism symptomatology at 36 months.
      Citation: Autism
      PubDate: 2022-04-26T12:01:48Z
      DOI: 10.1177/13623613221086448
       
  • Does learning you are autistic at a younger age lead to better adult
           outcomes' A participatory exploration of the perspectives of autistic
           university students

    • Free pre-print version: Loading...

      Authors: Tomisin Oredipe, Bella Kofner, Ariana Riccio, Eilidh Cage, Jonathan Vincent, Steven K Kapp, Patrick Dwyer, Kristen Gillespie-Lynch
      Abstract: Autism, Ahead of Print.
      Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a child they are autistic until they feel the child is “ready.” In this study, a participatory team of autistic and non-autistic researchers examined whether learning one is autistic at a younger age is associated with heightened well-being and Autism-Specific Quality of Life among autistic university students. Autistic students (n = 78) completed an online survey. They shared when and how they learned they were autistic, how they felt about autism when first learning they are autistic and now, and when they would tell autistic children about their autism. Learning one is autistic earlier was associated with heightened quality of life and well-being in adulthood. However, learning one is autistic at an older age was associated with more positive emotions about autism when first learning one is autistic. Participants expressed both positive and negative emotions about autism and highlighted contextual factors to consider when telling a child about autism. Findings suggest that telling a child that they are autistic at a younger age empowers them by providing access to support and a foundation for self-understanding that helps them thrive in adulthood.Lay abstractPeople learn they are autistic at different ages. We wanted to know if telling kids they are autistic earlier helps them feel better about their lives when they grow up. We are a team of autistic and non-autistic students and professors. Seventy-eight autistic university students did our online survey. They shared how they found out they were autistic and how they felt about being autistic. They also shared how they feel about their lives now. Around the same number of students learned they were autistic from doctors and parents. Students who learned they were autistic when they were younger felt happier about their lives than people who learned they were autistic when they were older. Students who learned they were autistic when they were older felt happier about being autistic when they first found out than people who did not have to wait as long. Our study shows that it is probably best to tell people they are autistic as soon as possible. The students who did our study did not think it was a good idea to wait until children are adults to tell them they are autistic. They said that parents should tell their children they are autistic in ways that help them understand and feel good about who they are.
      Citation: Autism
      PubDate: 2022-04-11T12:37:15Z
      DOI: 10.1177/13623613221086700
       
  • The implementation of the screening tool for autism in toddlers in Part C
           early intervention programs: An 18-month follow-up

    • Free pre-print version: Loading...

      Authors: Daina M Tagavi, Catherine C Dick, Shana M Attar, Lisa V Ibanez, Wendy L Stone
      Abstract: Autism, Ahead of Print.
      This study examined the feasibility of implementing the Screening Tool for Autism in Toddlers, an interactive Level-2 screen for autism spectrum disorder, within Part C Early Intervention settings. Participants included 69 Early Intervention providers (M age = 43.3 years, 93.7% females, 92.4% Whites) from nine programs who attended a one-day Screening Tool for Autism in Toddlers training workshop. Half of the providers reported using the Screening Tool for Autism in Toddlers, and reported it to be feasible and effective. Regardless of Screening Tool for Autism in Toddlers use, providers reported increased knowledge about recognizing the early signs of autism spectrum disorder following the workshop. Provider-reported self-efficacy regarding skills related to autism spectrum disorder screening increased significantly from baseline to the 18-month follow-up. Providers also described the facilitators (e.g. promotes communication with families) and barriers (e.g. certification process), that influenced their adoption. Results highlight the potential use of the Screening Tool for Autism in Toddlers within Early Intervention settings to identify autism spectrum disorder, and suggest an implementation model in which specific providers serve as a screening “point-person,” rather than expecting it to be used by all providers. Future research should aim to identify characteristics of agencies or providers that might facilitate Screening Tool for Autism in Toddlers use, as well as specific implementation plans and strategies that might promote long-term sustainability of Level-2 screening practices.This study was registered on ClinicalTrials.gov before the time of the first study enrollee. Registration number: NCT02409303; URL: https://clinicaltrials.gov/ct2/show/NCT02409303Lay abstractThe early detection of autism spectrum disorder can lead to access to autism spectrum disorder-specific services that have been shown to have a large impact on a child’s overall development. Although a stable diagnosis of autism spectrum disorder can be made by age 2 years, most children are not diagnosed until much later. To address this issue, this study examined the effectiveness of training Part C Early Intervention providers to use an interactive autism spectrum disorder screening tool, the Screening Tool for Autism in Toddlers. Sixty-nine providers attended a 1-day training workshop on the use of the Screening Tool for Autism in Toddlers. After the workshop, providers reported increased knowledge about recognizing the early signs of autism spectrum disorder, and about 45% of the providers reported using the Screening Tool for Autism in Toddlers with families in their caseloads 18 months after the training. These results suggest that the Screening Tool for Autism in Toddlers is feasible for use within Early Intervention settings. In addition, they suggest that specific providers might serve as a screening “point-person,” rather than expecting the Screening Tool for Autism in Toddlers to be used by all providers. Future research should aim to identify specific characteristics of agencies or providers that might be best suited for using the Screening Tool for Autism in Toddlers.
      Citation: Autism
      PubDate: 2022-04-11T12:06:42Z
      DOI: 10.1177/13623613221086329
       
  • Measuring subjective quality of life in autistic adults with the PROMIS
           global–10: Psychometric study and development of an autism-specific
           scoring method

    • Free pre-print version: Loading...

      Authors: Zachary J Williams, Carissa J Cascio, Tiffany G Woynaroski
      Abstract: Autism, Ahead of Print.
      Quality of life is widely acknowledged as one of the most important outcomes in autism research, but few measures of this construct have been validated for use in autistic people. The goal of the current study was to examine the psychometric properties of the Patient-Reported Outcomes Measurement Information System Global–10, an established self-report measure of health-related quality of life, in a sample of 901 autistic adults (predominantly female and adult-diagnosed) recruited from the Simons Foundation Powering Autism Research for Knowledge cohort. Using an item response theory framework, we performed a comprehensive psychometric evaluation of the Patient-Reported Outcomes Measurement Information System Global–10 in this sample, examining its latent structure, differential item functioning, reliability, and construct validity. After developing an autism-specific measurement model, the Patient-Reported Outcomes Measurement Information System Global–10 demonstrated excellent psychometric properties in the current sample, including excellent model-data fit, high reliability, minimal differential item functioning across subgroups of autistic adults, and an expected pattern of correlations with external variables. Exploratory analyses indicated that lower quality of life was associated with female sex and identified as a sexual/gender minority. A free online score calculator has been created to facilitate the use and interpretation of normed Patient-Reported Outcomes Measurement Information System Global–10 general quality of life latent trait scores for clinical and research applications (available at https://asdmeasures.shinyapps.io/promis_qol).Lay AbstractQuality of Life an outcome that both researchers and autistic advocates agree is extremely important to consider when implementing services, interventions, and supports for autistic people. However, there has been little research on the topic of how quality of life can best be measured in autistic people or whether existing quality of life questionnaires are appropriate for use in the autistic population. This study aimed to validate an established quality of life measure, the Patient-Reported Outcomes Measurement Information System Global–10, in a large sample of autistic adults recruited online. We created a new way to score the Patient-Reported Outcomes Measurement Information System Global–10 scale and generate a “General quality of life” score specific to autistic adults. This new score performed very well in this sample, showing very little measurement error and relating in expected ways to similar constructs, such as physical health and emotional distress. Exploratory analyses found that lower quality of life was associated with female sex and self-identification as a sexual or gender minority (i.e. LGBTQ + identity). These findings suggest that the new Patient-Reported Outcomes Measurement Information System Global–10 quality of life score is a reliable and valid measure of quality of life in autistic adults, although additional studies are necessary to further explore its measurement properties in other subsets of the autistic population, such as individuals with intellectual disabilities. This measure is freely available for use as an outcome in both research and clinical practice, and an online score calculator is available to support the use of this measure in real-world applications.
      Citation: Autism
      PubDate: 2022-04-11T12:05:20Z
      DOI: 10.1177/13623613221085364
       
  • Using EMDR with autistic individuals: A Delphi survey with EMDR therapists

    • Free pre-print version: Loading...

      Authors: Naomi Fisher, Caroline van Diest, Marguerite Leoni, Debbie Spain
      Abstract: Autism, Ahead of Print.
      Autistic individuals are at greater risk of experiencing adverse and traumatic life events. Eye Movement Desensitisation and Reprocessing (EMDR), a psychological therapy, is potentially effective for treating the constellation of difficulties arising from traumatic experiences, as well as mental health conditions. Yet minimal research has focused on how EMDR may require adaptation to improve its accessibility, acceptability and effectiveness for autistic individuals. In a three-round Delphi survey, 103 EMDR therapists were asked about barriers to EMDR for autistic individuals and adaptations employed to enhance therapy, so as to generate consensus about important or essential components of adaptations to EMDR. Four types of barriers were highlighted: client-related characteristics, therapist-related characteristics, differences in the therapeutic relationship and systemic issues. One hundred and twenty-four adaptations were identified, including 35 general adaptations (i.e. relevant across EMDR phases), 81 relating to specific EMDR phases and 8 about EMDR clinical supervision. Of these, 27 adaptations were used often or always by at least 80% of participants; a further 61 were sometimes incorporated within therapy, depending on the client. Study findings highlight the need for EMDR therapists to have training about autism and the potential ways of tailoring EMDR, and that individual case conceptualisation is key.Lay abstractEye Movement Desensitisation and Reprocessing (EMDR) is a psychological therapy that can help people process memories and distress about past events, so they have less impact on their daily lives. EMDR can be effective for treating symptoms of post-traumatic stress disorder, including nightmares and anxiety. Psychological therapies usually require adaptation so they are more accessible and effective for autistic people, but minimal research has focused on how best EMDR can be adapted. In this online survey study, we asked 103 EMDR therapists about barriers they think autistic people face when trying to have EMDR and what adaptations they use in their everyday practice. Four barriers were highlighted: client-related characteristics, therapist-related characteristics, differences in the therapeutic relationship and broader issues. Therapists identified a range of adaptations that can potentially be useful for autistic people, relating to being flexible, communicating clearly and having an awareness of individual differences. Many therapists emphasised the importance of not making assumptions about a person based on their autism diagnosis. Overall, the study findings suggest adaptations to EMDR are likely to be useful, but how relevant they are depends on each person.
      Citation: Autism
      PubDate: 2022-04-06T01:22:23Z
      DOI: 10.1177/13623613221080254
       
  • A randomized controlled trial into the effects of probiotics on
           electroencephalography in preschoolers with autism

    • Free pre-print version: Loading...

      Authors: Lucia Billeci, Alejandro Luis Callara, Letizia Guiducci, Margherita Prosperi, Maria Aurora Morales, Sara Calderoni, Filippo Muratori, Elisa Santocchi
      Abstract: Autism, Ahead of Print.
      Previous studies suggest that autism spectrum disorders are characterized by alterations in the microbiota–gut–brain axis. Probiotics may modify the composition and the functionality of the gut microbiota of autism spectrum disorder individuals, with possible cascading effects on brain function. In this study, we analyzed possible brain modifications induced by the administration of probiotics in 46 children with autism spectrum disorder using electroencephalography. A randomized 6-month controlled trial was performed. In subjects treated with probiotics, we observed a decrease of power in frontopolar regions in beta and gamma bands, and increased coherence in the same bands together with a shift in frontal asymmetry, which suggests a modification toward a typical brain activity. Electroencephalography measures were significantly correlated with clinical and biochemical measures. These findings support the importance of further investigations on probiotics’ benefits in autism spectrum disorder to better elucidate mechanistic links between probiotics supplementation and changes in brain activity.Lay abstractThis study investigates the effects of a probiotic on preschoolers’ brain electrical activity with autism spectrum disorder. Autism is a disorder with an increasing prevalence characterized by an enormous individual, family, and social cost. Although the etiology of autism spectrum disorder is unknown, an interaction between genetic and environmental factors is implicated, converging in altered brain synaptogenesis and, therefore, connectivity. Besides deepening the knowledge on the resting brain electrical activity that characterizes this disorder, this study allows analyzing the positive central effects of a 6-month therapy with a probiotic through a randomized, double-blind placebo-controlled study and the correlations between electroencephalography activity and biochemical and clinical parameters. In subjects treated with probiotics, we observed a decrease of power in frontopolar regions in beta and gamma bands, and increased coherence in the same bands together with a shift in frontal asymmetry, which suggests a modification toward a typical brain activity. Electroencephalography measures were significantly correlated with clinical and biochemical measures. These findings support the importance of further investigations on probiotics’ benefits in autism spectrum disorder to better elucidate mechanistic links between probiotics supplementation and changes in brain activity.
      Citation: Autism
      PubDate: 2022-04-01T09:36:37Z
      DOI: 10.1177/13623613221082710
       
  • Social support and links to quality of life among middle-aged and older
           autistic adults

    • Free pre-print version: Loading...

      Authors: Rebecca A Charlton, Goldie A McQuaid, Gregory L Wallace
      Abstract: Autism, Ahead of Print.
      Social support has a positive impact on quality of life (QoL) in neurotypical older adults and young autistic adults, but the association for older autistic adults is unclear. Autistic adults (n = 388; mean age = 40–83 years) were recruited via Simons Powering Autism Research for Knowledge (SPARK) Research Match. Participants completed questionnaires online querying demographic information, depression, and anxiety symptomatology, QoL (physical, psychological, social, environmental, and autism-specific) and social support (instrumental, subjective, and social interactions). Regression analyses examined whether different aspects of social support contributed to models explaining each domain of QoL. Models explaining QoL were significant. Subjective social support significantly contributed to the models for all aspects of QoL; social interactions contributed to the models for Physical and Psychological QoL, whereas instrumental support contributed to models for social, environmental and autism-specific QoL. Social support is an important contributor to the QoL of middle-aged and older autistic adults, after accounting for demographic factors and depression. Further studies are required to understand whether age-related changes in social support and QoL are the same for autistic as non-autistic older adults in order to identify and implement appropriate support.Lay abstractSocial support can take many forms, such as practical help, time spent socially with others, or the satisfaction with personal relationships. Social support is known to affect quality of life (QoL) in both non-autistic older and autistic young adults. QoL reflects how satisfied an individual is with their life either overall or in a certain area. We know little about middle-aged and older autistic adults’ experiences of social support or QoL. In this study, 388 adults aged 40–83 years old, completed online questionnaires asking about background such as age and sex, depression and anxiety symptoms, QoL (physical, psychological, social, environmental, and autism-specific), and different types of social support. Even after taking into account background, depression, and anxiety, social support was important for individuals’ QoL. To our knowledge this is the first paper to examine the relationship between social support and QoL in middle-aged and older autistic adults. Improving social support may have a significant impact on the QoL of older autistic adults. Future studies should examine whether age-related changes in social support (size, content, and arrangement of social networks) that are common in non-autistic aging, also occur among older autistic adults.
      Citation: Autism
      PubDate: 2022-04-01T09:35:05Z
      DOI: 10.1177/13623613221081917
       
  • “[I] don’t wanna just be like a cog in the machine”: Narratives of
           autism and skilled employment

    • Free pre-print version: Loading...

      Authors: Dora M Raymaker, Mirah Sharer, Joelle Maslak, Laurie E Powers, Katherine E McDonald, Steven K Kapp, Ian Moura, Anna “Furra” Wallington, Christina Nicolaidis
      Abstract: Autism, Ahead of Print.
      Autistic people experience disparities in employment which may be exacerbated for individuals in skilled employment. Little is known about the experiences of autistic people in skilled employment or how they define success. We used a community-based participatory research approach to conduct a thematic analysis with an inductive approach at a semantic level through a critical realist paradigm. We interviewed 45 autistic people with skilled training, 11 supervisors, and 8 key informants. We purposively sampled to maximize variation. We addressed trustworthiness through multiple coders and peer debriefing. Common themes included high stakes of disclosure, unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma/burnout, autistic advantages in the workplace, and complex dimensions of discrimination. Participants defined success as opportunities for growth, work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Strategies to facilitate success suggested a multi-faceted and wholistic approach including attention to the role of supervisors. Our findings suggest a highly customizable, systems-focused, multifaceted approach to autism employment intervention could be useful in improving skilled employment outcomes. We recommend further work particularly in the areas of disclosure and destigmatizing disability in the workplace.Lay abstractAutistic people are less likely to be employed than the general population. Autistic people with skilled training (e.g. training for jobs in acting, plumbing, science, or social work) might be even less likely to get a good job in their field. Little is known about the experiences of autistic people in skilled employment or what employment success means to them. We interviewed 45 autistic people with skilled training in a wide range of fields, 11 job supervisors, and 8 topic experts. We asked them about their experiences, what they felt helped them to be successful at work, and what employment success means to them. Participants talked about the high stakes of disclosure, taking unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma and burnout, the autistic advantages in the workplace, and complex dimensions of discrimination. Participants said success meant opportunities for growth, good work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Things that helped them be successful included flexible, accepting workplaces, supportive and respectful supervisors, and direct communication. What we learned suggests that an individualized, wholistic approach to autism employment intervention that considers both employers and employees and employee mental health could be useful. We also recommend more research into disclosure and destigmatizing disability at work.
      Citation: Autism
      PubDate: 2022-04-01T09:31:36Z
      DOI: 10.1177/13623613221080813
       
  • Greater gender diversity among autistic children by self-report and
           parent-report

    • Free pre-print version: Loading...

      Authors: Blythe A Corbett, Rachael A Muscatello, Mark E Klemencic, Millicent West, Ahra Kim, John F Strang
      Abstract: Autism, Ahead of Print.
      Emerging research suggests overrepresentation of gender diversity among autistic youth. Previous gender diversity research with autistic children has relied on parent-report based on a single question. The Gender Diversity Screening Questionnaire–Self-Report and Parent-Report assessed gender diversity experiences from 244 children (140 autism spectrum disorder and 104 typically developing), between 10 and 13 years, and their parents. Parent-report Child Behavior Checklist Item-110, “Wishes to be the opposite sex,” was also collected. Autistic children endorsed higher Gender Diversity Screening Questionnaire–Self-Report Binary Gender Diversity, t(223.21) = –2.83, adjusted p = 0.02, d = –0.35, and Nonbinary Gender Diversity, t(191.15) = –3.79, adjusted p = 0.001, d = –0.46, than typically developing children. Similarly, for Gender Diversity Screening Questionnaire–Parent-Report, there was a significant gender-body incongruence difference between the groups, t(189.59) = –2.28, adjusted p = 0.05, d = –0.30. Within-group analyses revealed that parents of autistic females-assigned-at-birth reported significantly more gender-body incongruence than males-assigned-at-birth, t(32.91) = –3.78, p 
      Citation: Autism
      PubDate: 2022-04-01T01:07:24Z
      DOI: 10.1177/13623613221085337
       
  • The spectrum of attitudes towards the spectrum of autism and its
           

    • Free pre-print version: Loading...

      Authors: Kinga Ferenc, Katarzyna Byrka, Magdalena Ewa Król
      Abstract: Autism, Ahead of Print.
      Attitude of mothers towards their children’s autism may play a role in mothers’ psychological well-being. We investigated the predictive value of how mothers understand autism (as a neurodivergence or a developmental disorder) on their psychological distress. A group of 371 mothers of children on the autism spectrum participated in this study. We found that understanding autism as a neurodivergence was related to lower psychological distress in mothers, even after controlling for the level of autism symptoms. However, when controlling for caregiver burden, their attitude towards autism was no longer significant in explaining their psychological distress. These findings suggest that the way mothers understand autism may be important for their psychological adjustment. However, it also suggests that mothers of children on the autism spectrum may adopt different attitudes towards autism, depending on their child’s level of autism symptoms and the caregiver burden.Lay abstractMothers of children on the autism spectrum experience high levels of emotional distress. Mothers cope with stress by having their own thoughts and opinions about their children. In this study, we tested whether the way mothers perceive autism may contribute to the level of distress they feel. Some mothers see autism as a developmental disorder that needs to be cured, but some see autism as a type of mind that needs to be accepted. Our findings showed that mothers who see autism more as a type of mind are generally less stressed. But we also showed that it matters how severe are the child’s symptoms, and how heavy was the perceived burden of caring for the child. These results imply that it is worth working on attitudes towards autism to help mothers cope better. But at the same time, we argue that mothers should not be judged for their perceptions of autism, as there is a huge spectrum of a child’s characteristics and family’s life circumstances.
      Citation: Autism
      PubDate: 2022-03-17T04:27:38Z
      DOI: 10.1177/13623613221081185
       
  • Healthcare clinician perspectives on the intersection of autism and gender
           dysphoria

    • Free pre-print version: Loading...

      Authors: Kate Cooper, William Mandy, Ailsa Russell, Catherine Butler
      Abstract: Autism, Ahead of Print.
      Autistic people are over-represented at gender clinics, but there is limited research to guide clinical practice with this group. We investigated the perspectives of clinicians working with autistic patients who experience gender dysphoria. We asked clinicians about the relationship between autism and gender dysphoria, and whether they work differently with this patient group. We recruited clinicians from young person and adult gender clinics and autism services (n = 16). We analysed the interview transcripts using interpretative phenomenological analysis (IPA). The first overarching theme was clinician understanding of the intertwined experiences of patients, with four subthemes: (a) coming to an individualised understanding of autism, gender dysphoria, and mental health; (b) different ways of thinking about gender; (c) social differences as barriers and facilitators to gender comfort; (d) the challenge of sensory sensitivities and puberty. The second overarching theme was mismatch of patient and clinician communication styles and goals, with three subthemes: (a) different communication of gender needs; (b) changing clinical sessions to overcome barriers; (c) tension between clinician and patient aims and thinking styles. We conclude that autism adaptations should be made in gender settings, by increasing clinician understanding of how autism and gender dysphoria can intersect, as well as by making adjustments to clinic processes.Lay AbstractAutistic people are more likely to have a gender identity which does not match their sex assigned at birth. Some people experience distress about their sex and gender not matching, which is called gender dysphoria. Such individuals may wish to attend a gender clinic to access healthcare support for gender dysphoria. Currently, there is limited evidence to help clinicians best support autistic people who need healthcare for gender dysphoria. We wanted to find out what healthcare clinicians think about working with autistic patients with gender dysphoria. We interviewed 16 clinicians who work in healthcare services with adults and young people who are autistic and experience gender dysphoria. We recorded the interviews and carefully analysed the content to find key themes. We found that clinicians worked with patients to try and better understand their experiences of gender dysphoria. Clinicians identified features of autism that they believed were related to gender identity and dysphoria including different thinking styles, social differences, and sensory sensitivities. Clinicians noticed that autistic people spoke about their gender in different ways to non-autistic people. Clinicians tried to adapt their practice to better meet the needs of their autistic patients. These adaptations tended to focus on differences in the assessment process, for example, offering longer or shorter appointments and changing their communication style. We conclude that clinicians were offering an individualised approach to autistic patients experiencing gender dysphoria. However, these clinicians were particularly interested in working with autistic people, and so may not be representative of the wider clinician population. Clinicians working in this area should receive training on autism adaptations and the intersection of autism and gender dysphoria.
      Citation: Autism
      PubDate: 2022-03-14T10:08:42Z
      DOI: 10.1177/13623613221080315
       
  • ‘Someone like-minded in a big place’: Autistic young adult’s
           attitudes towards autistic peer support in mainstream education

    • Free pre-print version: Loading...

      Authors: Catherine J Crompton, Sonny Hallett, Harriet Axbey, Christine McAuliffe, Katie Cebula
      Abstract: Autism, Ahead of Print.
      Autistic young people in mainstream schools often experience low levels of peer social support, have negative perceptions of their differences and feel disconnected from their school community. Previous research findings have suggested that encouraging autistic young people to explore autistic culture and spending time with autistic peers may be associated with more positive outcomes. Autism-specific peer support is a framework that may support this process. Thirteen participants (eight male/five female) completed semi-structured interviews, exploring the idea of autism-specific peer support within mainstream schools and the practicalities of how it may work within a school setting. Thematic analysis was applied, and three themes are reported: (1) neurodiversity and an ethos of inclusivity, (2) flexibility and (3) benefits and challenges of embedding peer support in the wider school community. The idea of autism-specific peer support for autistic pupils in mainstream secondary schools was generally positively received. Peer support may provide a unique opportunity for autistic pupils to interact in a natural, comfortable way; share useful strategies; and build their identities. Nevertheless, careful design, training and ongoing support, alongside awareness of the rights, needs and preferences of individual pupils involved are likely to be crucial in ensuring the success of any peer support programme.Lay abstractAutistic young people may struggle in mainstream schools and feel disconnected from their peers and their school. We know that autistic adults can benefit from spending time with other autistic people, but we don’t know if this is the case for younger autistic people. We conducted interviews with 13 autistic young adults in the United Kingdom who recently left mainstream schooling. We asked them if they would have been interested in being involved in autistic peer support when they were at school, and if so, what that peer support should look like. Results indicated that autistic young people were enthusiastic about the idea of peer support. They thought it was important that peer support was flexible to suit their needs at different times, as well as inclusive, positive, and embracing neurodiversity. They also discussed the potential benefits and difficulties of having a peer support system within a school setting. This adds to the growing body of research on the potential benefits of autistic-autistic interactions on autistic people’s well-being and sense of belonging. Findings can be used to help design pilot peer support projects in schools that can be tested to see how effective they are.
      Citation: Autism
      PubDate: 2022-03-05T09:20:12Z
      DOI: 10.1177/13623613221081189
       
  • Considerations of the built environment for autistic individuals: A review
           of the literature

    • Free pre-print version: Loading...

      Authors: Melissa Heather Black, Sarah McGarry, Lynn Churchill, Emily D’Arcy, Julia Dalgleish, Isabelle Nash, Alisala Jones, Tin Yan Tse, Jane Gibson, Sven Bölte, Sonya Girdler
      First page: 1904
      Abstract: Autism, Ahead of Print.
      Until recently, built environments have been designed exclusively to meet the needs of neurotypical populations; however, there is increasing recognition of the need to make built environments more accommodating for neurodiverse populations, including autistic individuals. This scoping review aims to comprehensively explore and synthesise this literature on the internal built environment for autistic individuals providing recommendations for designers, policymakers and clinicians. Five electronic databases were searched, resulting in a total of 28 studies being reviewed. Recommendations are provided for design and construction, lighting, sound, aesthetics, temperature and air quality. While in its early stages, evidence demonstrating the impact that particular qualities of light, colour, sound and spatial planning have on the human sensorium is emerging. In turn, this new knowledge is informing design decisions that are progressing interior environments towards inclusivity. Understanding the positive and negative impacts of decisions made in the design of the built environment has the potential to facilitate the participation and inclusion of autistic individuals.Lay abstractFactors related to the interiors of buildings, including the layout of rooms, colours, smells, noises, temperature, ventilation, colour and clutter, among other things, can change the way we interact with our environment and the people around us. Autistic individuals can have differences in processing sensory information and may find aspects of the built environment (BE) over-whelming and difficult to navigate. We reviewed the existing literature exploring the BE and autism. This study found that it is possible to make changes to the BE to create more inclusive and friendly environments for everyone, including autistic individuals. Findings from this study provide clear recommendations that can be used by interior designers, architects, builders, and clinical practitioners to make a positive difference. Key recommendations include using simple spatial layouts, compartmentalising and zoning spaces into specific activity sections and providing retreat spaces. The thoughtful placement of windows and blinds and the installation of dimmable lights, for example, will allow users to manage or reduce sensory over-stimulation caused by lights. Similarly, we recommend creating soundproofing and sound absorbent materials to reduce background noise and sound levels. We also recommend using neutral or simple colour palettes and restrained use of patterns. Finally, and most importantly, the BE needs to be flexible and adaptable to meet the unique needs of each person. This study provides a starting point for design guidelines and recommendations towards making a difference to the everyday experiences of the interiors of buildings.
      Citation: Autism
      PubDate: 2022-06-13T01:34:15Z
      DOI: 10.1177/13623613221102753
       
  • Leisure, employment, community participation and quality of life in
           caregivers of autistic children: A scoping review

    • Free pre-print version: Loading...

      Authors: Gemma Davy, Katy L Unwin, Josephine Barbaro, Cheryl Dissanayake
      First page: 1916
      Abstract: Autism, Ahead of Print.
      Parenting an autistic child can reduce the time parents have to participate in their own interests, but the impact this has on caregiver quality of life is not well understood. The aim in undertaking this scoping review was to examine and describe current research about occupational participation and quality of life among parents of autistic children. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension guidelines, a comprehensive search of multiple databases was conducted with a systematic selection process resulting in a final set of 70 articles. These included publications related to leisure, community and employment occupations, and quality of life in parents and caregivers of autistic children or children with additional needs. The review revealed the impact of caregiving demands and challenges in raising an autistic child that often take priority over the caregiver’s own needs and desires, particularly in occupational participation, which impacts their quality of life. Gaps were identified in the literature on parental occupations and the relationship with quality of life among caregivers of autistic children, particularly fathers. Further investigation into caregiving experiences and examination of the relationship between parental occupations and quality of life in caregivers of autistic children is needed, as the findings can inform the development of suitable supports for them.Lay abstractWe searched a wide range of academic journals for published information on the participation levels of caregivers of autistic children in activities relating to leisure, social, community and employment contexts, and the impact that participation may have on caregiver quality of life. Overall, we found that the impact of parenting an autistic child is broad with caregivers often prioritising their child’s needs over their own, particularly in occupational participation, which impacts their quality of life. Findings also highlighted a need for further research to investigate the experience of caregivers, and the relationship between participation and quality of life in caregivers of autistic children, as the results can inform the development of better supports for them.
      Citation: Autism
      PubDate: 2022-06-29T06:57:33Z
      DOI: 10.1177/13623613221105836
       
  • Autism presentation in female and Black populations: Examining the roles
           of identity, theory, and systemic inequalities

    • Free pre-print version: Loading...

      Authors: Maire Claire Diemer, Emily D Gerstein, April Regester
      First page: 1931
      Abstract: Autism, Ahead of Print.
      The prevalence of autism is rising, a dynamic attributed to numerous explanations (e.g. better diagnostic practices, decreased stigma). As this neurodevelopmental disability increases in visibility, disparities in its diagnostic rate grow. Female and Black populations in the United States have historically lower prevalence, are diagnosed later, are more likely to have co-occurring intellectual disability, and experience exclusion from research. Autistic Black girls are effectively invisible in the literature. To combat this exclusion, this narrative review discusses intersectionality theory and how it may be used to provide integrated models that are inclusive toward diverse gender, ability, and racial/ethnic backgrounds. Systemic inequalities, including prenatal care and misdiagnosis, disproportionately negatively impact the quality of care available to female and Black autistic populations. The authors recommend that research include autistic populations with co-occurring intellectual disability, include a diagnostic evaluation as part of protocols, and clinically, universal screening and improved provider competence and confidence in working with diverse autistic populations.Lay abstractAlthough the prevalence of autism has been rising in recent years, disparities in diagnosis still remain. Female and Black populations in the United States are diagnosed later, are more likely to have an intellectual disability, and are excluded from research as well as services designed for autistic individuals. Autistic Black girls are effectively invisible in the current scientific literature. Intersectional theory, which looks at a person as a whole, examines models that are inclusive toward diverse gender, ability, and racial/ethnic backgrounds. This theory may be a useful approach to clinical and research work with autism so that practitioners may be most effective for the whole population of autistic people. The authors recommend research focusing on inclusion of autistic populations with intellectual disability and research studies that include evaluations as part of the procedure. Clinically, the authors recommend a focus on screening all young children for autism and improving provider knowledge in working with diverse autistic populations.
      Citation: Autism
      PubDate: 2022-07-28T11:41:19Z
      DOI: 10.1177/13623613221113501
       
  • A prospective study of associations between early fearfulness and
           perceptual sensitivity and later restricted and repetitive behaviours in
           infants with typical and elevated likelihood of autism

    • Free pre-print version: Loading...

      Authors: Nisha Narvekar, Virginia Carter Leno, Greg Pasco, Mark H Johnson, Emily JH Jones, Tony Charman
      First page: 1947
      Abstract: Autism, Ahead of Print.
      Autism is diagnosed based on social and communication difficulties, restricted and repetitive behaviours and sensory anomalies. Existing evidence indicates that anxiety and atypical sensory features are associated with restricted and repetitive behaviours, but cannot clarify the order of emergence of these traits. This study uses data from a prospective longitudinal study of infants with and without a family history of autism (N = 247; Elevated Likelihood N = 170 and Typical Likelihood N = 77). Longitudinal cross-lag models tested bidirectional pathways between parent-rated infant fear/shyness and perceptual sensitivity at 8, 14 and 24 months, and associations between these domains and parent-rated restricted and repetitive behaviours and social communication scores at 36 months. In addition to within-domain continuity, higher levels of fear/shyness at 14 months were associated with higher levels of perceptual sensitivity at 24 months. Higher levels of both fear/shyness and perceptual sensitivity at 24 months were associated with greater restricted and repetitive behaviours and social communication scores at 36 months. Results demonstrate the directionality of developmental pathways between fear/shyness and perceptual sensitivity in infancy and toddlerhood, but question theories that argue that these domains specifically underlie restricted and repetitive behaviours rather than autism. Identifying how early emerging anxiety and sensory behaviours relate to later autism is important for understanding pathways and developing targeted support for autistic children.Lay abstractRestricted interests and repetitive behaviours are central to the diagnosis of autism and can have profound effects on daily activities and quality of life. These challenges are also linked to other co-occurring conditions such as anxiety and sensory sensitivities. Here, we looked at whether early emerging signs of anxiety and sensory problems appear before symptoms of autism by studying infants with a family history of autism, as these infants are more likely to develop autism themselves. Studying infant siblings provides an opportunity for researchers to focus on early developmental markers of autism as these infants can be followed from birth. This study found that early infant signs of anxiety (e.g. fear/shyness) predicted later perceptual sensitivity, and those infants who scored higher on fear/shyness and sensitivity were more likely to experience more persistent repetitive behaviours, but also social and communication difficulties in toddlerhood. Early signs of anxiety and perceptual sensitivity may thus relate to both later social difficulties and repetitive behaviours. These findings support the importance of further research exploring the causal links between these domains in relation to autism, resulting in increased understanding of children who go onto develop autism in the future and guiding early interventions and supports.
      Citation: Autism
      PubDate: 2022-01-13T08:47:06Z
      DOI: 10.1177/13623613211068932
       
  • A survey of autistic adults, relatives and clinical teams in the United
           Kingdom: And Delphi process consensus statements on optimal autism
           diagnostic assessment for adults

    • Free pre-print version: Loading...

      Authors: Sarah Wigham, Barry Ingham, Ann Le Couteur, Colin Wilson, Ian Ensum, Jeremy R Parr
      First page: 1959
      Abstract: Autism, Ahead of Print.
      Accessing adult autism diagnostic pathways can be difficult. This study explored perspectives of UK autistic adults, relatives and clinicians regarding the characteristics of optimal adult autism assessment and diagnostic services. In stage 1, three key stakeholder groups were surveyed about experiences of adult autism diagnostic services (pre-assessment/assessment): 343 autistic adults, 45 relatives and 35 clinicians completed parallel surveys. Information from stage 1 surveys was used to devise statements for a modified Delphi process in stage 2 seeking consensus among clinicians on optimal diagnostic service characteristics. Data analyses were non-parametric and descriptive. Over half of adults were in contact with mental health services prior to autism diagnosis. Clinicians reported that multidisciplinary diagnostic teams lacked key professionals. Thirteen statements describing optimal autism diagnostic service provision were developed. There was consensus from clinicians on 11 statements relating to clear assessment pathways, updates for people while waiting, pre-assessment information gathering/provision, co-occurring condition identification and training/networking. Some autistic adults, relatives and clinicians were positive about services, all stakeholders identified improvements were needed. The findings describing optimal service provision are relevant for UK clinicians, managers and commissioners to improve diagnostic assessments for autistic adults, and have international relevance for similar health systems.Lay abstractLiving with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people’s experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide.
      Citation: Autism
      PubDate: 2022-02-16T08:54:09Z
      DOI: 10.1177/13623613211073020
       
  • A virtuous circle: Stakeholder perspectives of a short-term intensive
           parent training programme delivered within the context of routine services
           for autism in China

    • Free pre-print version: Loading...

      Authors: Zuyi Fang, Jamie M Lachman, Cheng Zhang, Dongping Qiao, Jane Barlow
      First page: 1973
      Abstract: Autism, Ahead of Print.
      Although the evidence of parent training programmes for families of autistic children has continued to grow, little is known about the experiences and perceptions of key stakeholders, especially in low- and middle-income countries. This qualitative study was part of a larger real-world evaluation of a short-term intensive parent training programme in routine services delivered to caregivers of autistic children aged 3–6 years in China. It aimed to provide insights into programme acceptability, reasons for participant involvement, and factors related to programme implementation. Fourteen caregivers participated in the in-depth interviews, and two focus group discussions were conducted with eight practitioners. Data were analysed using a combination of data- and theory-driven approaches. Findings point to the needs in low autism resource settings for substantial practice and feedback; group support; individualised coaching; more autism-related knowledge, resources and activities for children and extended family members; and organisational support to practitioners. Further research is suggested to address the recommendations and assess their effectiveness empirically.Lay abstractWhile much knowledge about autism derives from high-income countries, most people diagnosed with autism reside in low- and middle-income countries, where little is documented in terms of local interventions. This is also true for parent training programmes for families of autistic children. An evaluation was conducted to understand the effects of a short-term intensive parent training programme delivered in routine services for families of autistic children in China. This study reported results from the in-depth interviews with 14 participating caregivers and group discussions with eight group leaders. The interviews and discussions were aimed at learning (1) to what extent the programme components were deemed acceptable, (2) what affected caregivers’ attendance and engagement in the programme and (3) what affected group leaders’ delivery of the programme. Findings suggested that future parent training programmes provide adequate opportunities for caregivers to practice and receive feedback; group support; coaching experience tailored to individual challenges; more autism-related knowledge, resources and activities for children and extended family members; and organisational support to group leaders. This study highlights the value of qualitative research and points to the need for more empirical studies to address the recommendations, so that research findings can be better utilised to promote practices.
      Citation: Autism
      PubDate: 2022-01-24T12:13:46Z
      DOI: 10.1177/13623613211070869
       
  • Exploring potential sources of childhood trauma: A qualitative study with
           autistic adults and caregivers

    • Free pre-print version: Loading...

      Authors: Connor M Kerns, Stephen Lankenau, Paul T Shattuck, Diana L Robins, Craig J Newschaffer, Steven J Berkowitz
      First page: 1987
      Abstract: Autism, Ahead of Print.
      The stressors autistic individuals encounter and experience as traumatic may vary from non-autistics. We conducted a qualitative study to identify potential sources of trauma for autistic individuals and evaluate correspondence with a standard measure. We enrolled autistic adults (N = 14) and caregivers (N= 15) with varied adversities, levels of functioning, and socio-demographics. Participants completed standard measures of autism, traumatic exposures and stress, and qualitative interviews, which were submitted to thematic analysis. A wide range of experiences were described as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and caregivers described sources of trauma in interviews not captured by standardized measures. Varied stressful experiences, many not detected by a standardized measure, may have a traumatic effect on autistic individuals. Whereas some reflect commonly recognized trauma sources, others may reflect particular vulnerabilities for autistic individuals. Results have implications for assessing traumatic events and understanding their contribution to mental health inequities in the autistic population.Lay abstractThe stressors autistic individuals encounter and experience as traumatic may vary from those not on the spectrum and typically measured. We conducted in-depth interviews with autistic adults and caregivers of children and adults on the spectrum to identify potential sources of trauma for autistic individuals and evaluate the ability of a standard trauma measure to capture those experiences. Fourteen autistic adults and 15 caregivers with varied backgrounds, clinical profiles, and histories of adversity were interviewed. Participants also completed standard measures of autism, traumatic exposures, and stress. Interviews were analyzed to record both traditional sources of trauma, for comparison with the standard measure, and distinct sources, described as traumatic only in the narratives of participants. Participants described varied experiences as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and most caregivers described sources of trauma in interviews not reported on the standard measure. Results have implications for assessing traumatic events in autism and for understanding their contribution to the mental health of this group.
      Citation: Autism
      PubDate: 2022-01-24T12:11:46Z
      DOI: 10.1177/13623613211070637
       
  • Parent peer coaching program: A cascading intervention for parents of
           children with autism in Mongolia

    • Free pre-print version: Loading...

      Authors: James D Lee, Hedda Meadan, Enkhjin Oyunbaatar
      First page: 1999
      Abstract: Autism, Ahead of Print.
      Parents of children with autism in low-resource settings have reported exacerbated difficulties related to raising their children. In this single-case research using multiple probe design, four parent mentors and five parent peers and their children with autism in Mongolia participated in the parent peer coaching program. The intervention package, including training and coaching in evidence-based practices, was delivered via telepractice. Parent mentors completed online training and were coached by a bilingual and bicultural research assistant in a staggered fashion. Visual analysis revealed a functional relation between the intervention package and the coaching fidelity of parent mentors. Social validity data indicated that all participants were satisfied with the program and reported it was acceptable, feasible, and effective. Implications for conducting intervention research in a low-resource setting are described.Lay abstractParents of children with autism are known to experience severe hardships related to raising their children. These hardships are exacerbated in low-resource settings internationally where there is very little resource for children and their families, including professionals who provide evidence-based treatment. Mongolia was chosen as an example of such low-resource settings in this single-case research, and four parent mentors and five parent peers and their children with autism participated and completed the study. A local parent group, the Autism Association of Mongolia, was actively involved in this study and helped with recruitment, development, adaptation, and implementation of the intervention to increase acceptability and feasibility. In addition, a local bilingual research assistant was also utilized as the purpose of this study was to build capacity of diverse stakeholders of children with autism in Mongolia. The research assistant was trained and coached by the research team on both content (communication teaching strategies and behavior management) and delivery (coaching adults), who then provided coaching to parent mentors via live videoconferencing in Mongolian. Parent mentors then similarly provided coaching to parent peers after observing the interactions with their children with autism. The findings suggest that parents can effectively deliver high-fidelity coaching to disseminate evidence-based treatment in low-resource settings when given proper training and coaching. Further examination on scalability and sustainment of effects is suggested.
      Citation: Autism
      PubDate: 2022-01-27T10:39:06Z
      DOI: 10.1177/13623613211070636
       
  • The creator did not give me more than I can handle: Exploring coping in
           parents of Black autistic children

    • Free pre-print version: Loading...

      Authors: Ericka M Lewis, Sarah Dababnah, Kelley R Hollie, Irang Kim, Yao Wang, Wendy E Shaia
      First page: 2015
      Abstract: Autism, Ahead of Print.
      There is a paucity of studies that center on the lived experiences of Black families raising autistic children, and major gaps remain in our understanding of how parents of Black autistic children cope with stressors. Drawing from the Black family stress and coping model, this mixed-methods study explored coping strategies utilized by parents of Black autistic children. Twenty-two parents completed the Ways of Coping Questionnaire and participated in semi-structured interviews. Using grounded theory methods, we conducted data collection and analyses simultaneously until we did not identify new themes. Our quantitative and qualitative results were generally aligned. We found that parents used an array of coping strategies, at times combining different methods, to address complex stressors. Parents also expressed the need for more social support from providers, as well as a desire for inclusive spaces where they could engage with other parents whom they felt could better relate to the stressors they encountered. Study findings also suggest that kinship support, church involvement, and collective socialization are key protective factors in Black communities. Therefore, understanding the role culture plays in the use and effectiveness of coping strategies is essential to improving healthcare and other systems of care.Lay abstractParents of Black autistic children use several strategies to cope with daily stressors. These strategies include seeking social support, self-care, and optimism. We asked parents about their experiences receiving treatment services for their autistic child and how they reduce parenting stress. Twenty-two parents completed a coping survey and participated in individual interviews. Few studies have explored the experiences of Black families raising autistic children, and it’s important for healthcare and other systems of care to understand the role culture, race, and ethnicity play in the use of coping strategies. In our study, the majority of parents relied on social support to relieve stress and identified partners, family, and community members, as their most useful sources of support. Connecting with other parents of autistic children, through support groups and social media, also helped parents relieve stress. Parents discussed using self-care activities (e.g. church, exercising, listening to music) to cope with stressors. Several parents described how prayer and meditation helped them reframe stressful situations and gain more patience and appreciation for “what’s important.” The findings of this work demonstrate the need for professionals to have ongoing and deeper conversations about the ways in which parents deal with stressors. In particular, clinicians should leverage the strengths of Black families and promote strategies that are culturally informed and engaged.
      Citation: Autism
      PubDate: 2022-04-08T10:43:22Z
      DOI: 10.1177/13623613211070865
       
  • Patterns in reporting and participant inclusion related to race and
           ethnicity in autism intervention literature: Data from a large-scale
           systematic review of evidence-based practices

    • Free pre-print version: Loading...

      Authors: Jessica R Steinbrenner, Nancy McIntyre, Lindsay F Rentschler, Jamie N Pearson, Paul Luelmo, Maria Elizabeth Jaramillo, Brian A Boyd, Connie Wong, Sallie W Nowell, Samuel L Odom, Kara A Hume
      First page: 2026
      Abstract: Autism, Ahead of Print.
      There are marked racial and ethnic disparities in diagnosis and services for individuals on the autism spectrum, yet race and ethnicity are underreported and underexamined in autism research. The current study examines the reporting of race and ethnicity and the inclusion of participants across racial and ethnic groups in studies included in a large-scale systematic review of autism intervention research (1990–2017). Trained research assistants reviewed 1013 articles and extracted data on the reporting of race and ethnicity data and the inclusion of participants from different racial and ethnic categories from each article. Only 25% of the articles reported any data on race and ethnicity and reporting over time has slowly increased across the 28 years of the review. Descriptive statistics suggest that race and ethnicity reporting varied by study design, intervention, and outcomes. In studies with reported data, White participants had the highest rate of participation (64.8%), with a large gap between the next highest rates of participation, which were among Hispanic/Latino (9.4%), Black (7.7%), and Asian (6.4%) participants. The lack of reporting and the limited inclusion of participants across minoritized racial and ethnic groups are concerning and suggest a need to examine practices in autism research from planning to dissemination.Lay AbstractResearchers who study autism-related interventions do a poor job reporting data related to the race and ethnicity of autistic individuals who participate in their studies, and of those who do report these data, the participants are overwhelmingly White. This is problematic for many reasons, as we know little about how interventions are meeting the needs of culturally and linguistically diverse populations, and we assume that interventions are effective for all when they have been developed and validated primarily with and for White children. This study examined the reporting patterns of autism intervention researchers whose work was included in a large-scale systematic review of the intervention literature published between 1990 and 2017. We found that only 25% of studies (out of 1,013 included in the review) included data related to the race and ethnicity of their participants, with minimal change in reporting patterns across the years. In studies with reported data, White participants had the highest rate of participation, with a large gap between the next highest rates of participation among Hispanic/Latino, Black, and Asian participants. Other race and ethnicity groups had very low representation. This study includes additional analyses which examine how the reporting patterns and the inclusion of racially and ethnically diverse participants varies across study types, interventions, and outcome areas. Reporting this data is merely a starting point to begin to address the many disparities in autism-related healthcare, education, and research practices, and this article includes broader implications and next steps to ensure the field becomes more equitable and inclusive.
      Citation: Autism
      PubDate: 2022-01-22T10:04:06Z
      DOI: 10.1177/13623613211072593
       
  • Friendship quality among autistic and non-autistic (pre-) adolescents:
           Protective or risk factor for mental health'

    • Free pre-print version: Loading...

      Authors: Rachel A.G. O’Connor, Neeltje van den Bedem, Els M.A. Blijd-Hoogewys, Lex Stockmann, Carolien Rieffe
      First page: 2041
      Abstract: Autism, Ahead of Print.
      Autistic (pre-) adolescents are often misunderstood by their peers, which can lead to challenges within their friendships. Yet, friendships play an important role in our psychological wellbeing, whereby in the non-autistic population good quality friendships usually protect against mental health difficulties, whereas conflictual friendships increase the risk. The present study investigated positive and negative friendship quality in autistic and non-autistic (pre-) adolescents. Furthermore, the relations between positive friendship quality and negative friendship quality with anxiety and depressive symptoms were examined. Participants were 306 autistic and non-autistic (pre-) adolescents aged 9–16 (M = 11.69 years; SD = 1.33 years). Our results demonstrated that autistic (pre-) adolescents reported lower positive friendship quality than their non-autistic peers, while no group or gender differences were observed for negative friendship quality than non-autistic boys. For the whole sample, positive friendship quality was associated with fewer depressive symptoms, while the opposite was true for negative friendship quality. For autistic girls only, higher positive friendship quality was related to more symptoms of anxiety. These outcomes seem to emphasize the need for supporting the friendships of autistic young people, perhaps by educating non-autistic young people around how to be supportive friends to their autistic peers.Lay abstractAutistic young people are often misunderstood by non-autistic young people, and this can lead to difficulties in their friendships. We know that friendship is very important for our mental health. For non-autistic young people, having good friendships is linked to better mental health and having problems in friendship can cause mental health problems. This study aimed to compare the positive and negative features of friendship that autistic non-autistic young people experience. The study also aimed to understand if having positive or negative friendship features is related to signs of mental health problems (anxiety and depression). 306 young people aged 9–16 took part in this study. These were 86 autistic boys, 18 autistic girls, 91 non-autistic boys and 111 non-autistic girls. The findings of this study showed that autistic young people have less positive friendship features than non-autistic young people. For all young people in the study, having more positive friendship features was related to fewer signs of depression, while having more negative friendship features was related to more signs of depression. Just for autistic girls, having more positive friendship features was related to more signs of anxiety. These findings show that support is needed to help autistic young people have more positive friendships. For example, by teaching non-autistic young people how to be supportive friends to their autistic peers.
      Citation: Autism
      PubDate: 2022-01-22T10:11:32Z
      DOI: 10.1177/13623613211073448
       
  • Individuals with autism show non-adaptive relative weighting of perceptual
           prior and sensory reliability

    • Free pre-print version: Loading...

      Authors: Nahal Binur, Hagit Hel-Or, Bat-Sheva Hadad
      First page: 2052
      Abstract: Autism, Ahead of Print.
      Modulation in sensory-perceptual processing is a known characteristic of autism, although the underlying mechanism is debated. A prevailing account is formulated in Bayesian terms, where either a reduced prior or reduced noise in the measurement (sensory input) may account for the modulated perception as expressed by the posterior distribution. However, research has shown that individuals with autism use priors in some conditions, and to the same extent as neurotypicals, while other studies fail to show enhanced sensory sensitivity in these individuals. We asked whether the modulated prior effects on perception may arise from non-adaptive relative weighting of priors to sensory reliability. We employed a Two-alternative forced choice (2AFC) width discrimination task, using the width–height illusion, which is based on a long-term acquired bias, where a taller rectangle is typically perceived as thinner than a shorter one. The measurement was manipulated by adding Gaussian blur on the vertical edges of the rectangles. Typically developed individuals displayed the expected increase in bias as a function of noise in the measurement. High-functioning individuals with autism exhibited typical perceptual resolutions and similar susceptibility to the illusion. However, the relative weighting of the perceptual bias and the sensory input differed in their effect on the two groups. Individuals with autism showed a non-adaptive, consistent bias across the different degrees of sensory noise, while typically developed individuals displayed monotonically increasing biases. Cluster analyses showed that this difference in the relative weighting between the groups was preserved regardless of the overall illusion magnitude displayed by individuals in each cluster.Lay abstractUnique perceptual skills and abnormalities in perception have been extensively demonstrated in those with autism for many perceptual domains, accounting, at least in part, for some of the main symptoms. Several new hypotheses suggest that perceptual representations in autism are unrefined, appear less constrained by exposure and regularities of the environment, and rely more on actual concrete input. Consistent with these emerging views, a bottom-up, data-driven fashion of processing has been suggested to account for the atypical perception in autism. It is yet unclear, however, whether reduced effects of prior knowledge and top-down information, or rather reduced noise in the sensory input, account for the often-reported bottom-up mode of processing in autism. We show that neither is sufficiently supported. Instead, we demonstrate clear differences between autistics and neurotypicals in how incoming input is weighted against prior knowledge and experience in determining the final percept. Importantly, the findings tap central differences in perception between those with and without autism that are consistent across identified sub-clusters within each group.
      Citation: Autism
      PubDate: 2022-03-23T06:54:26Z
      DOI: 10.1177/13623613221074416
       
  • ‘We’ve come a very, very, long way’ Overcoming stigma of autism: An
           interpretative phenomenological analysis within the UK Jewish community

    • Free pre-print version: Loading...

      Authors: David Ariel Sher, Jenny L Gibson, Hannah Ella Sher
      First page: 2066
      Abstract: Autism, Ahead of Print.
      Autistic people contend with high levels of stigma in many cultures worldwide. There is a scarcity of literature on stigma in relation to autism in faith communities and virtually no research focussing on this topic in Jewish communities. In this study, we aimed to explore experiences of stigma towards autism and sought views on what steps have and can be taken to reduce such stigma. Using an interpretative phenomenological analysis approach, we conducted semi-structured interviews with 10 participants within the UK Jewish community, in both mainstream and specialist autistic schools. Interviews were conducted over 2 months in 2020. During analysis, 5 superordinate (central) themes and 13 subordinate themes were abstracted. Superordinate themes included ‘Stigma not specific to the Jewish community’; ‘Considerable strides made’; ‘More a lack of knowledge or denial than stigma’; ‘Fear of stigma is a real concern but not widely prevalent’; and ‘Potent factors that reduce stigma in the Jewish community’. We recommend workshops for greater awareness and training for teachers and parents on autism and autistic children’s experiences. We also recommend the formation of specialist autism schools in other communities and promotion of positive narratives concerning autistic people, as this successfully reduced stigma within the Jewish community.Lay abstractAutistic people contend with high levels of stigma in a wide array of cultures worldwide. There is a scarcity of literature on stigma in relation to autism in faith communities, with some limited research on this issue in Christian, Muslim and Hindu populations. There is virtually no research focussing on this topic in Jewish communities and to our knowledge, none at all within UK Jewish contexts. In this study, we aimed to explore experiences of stigma towards autism and sought views on what steps have and can be taken to reduce such stigma. Using an interpretative phenomenological analysis approach, we conducted semi-structured interviews with 10 participants within the UK Jewish community, including parents, rabbis, SENDCos, teachers, and headmasters of autistic children in both mainstream and specialist autistic schools. Interviews were conducted over 2 months in 2020. During analysis, 5 superordinate (central) themes and 13 subordinate themes were abstracted from the data. Superordinate themes included ‘Stigma not specific to the Jewish community’; ‘Considerable strides made’; ‘More a lack of knowledge or denial than stigma’; ‘Fear of stigma is a real concern but not widely prevalent’; and ‘Potent factors that reduce stigma in the Jewish community’. We recommend workshops for greater awareness and training for teachers and parents on autism and autistic children’s experiences. We also recommend the formation of specialist autism schools in other communities and promotion of positive narratives concerning autistic people, as this successfully reduced stigma within the Jewish community.
      Citation: Autism
      PubDate: 2022-03-23T06:56:04Z
      DOI: 10.1177/13623613221075099
       
  • Bilingualism effects on cognition in autistic children are not
           all-or-nothing: The role of socioeconomic status in intellectual skills in
           bilingual autistic children

    • Free pre-print version: Loading...

      Authors: Eleni Peristeri, Silvia Silleresi, Ianthi Maria Tsimpli
      First page: 2084
      Abstract: Autism, Ahead of Print.
      Children with autism often display discrepancies in their intellectual functioning, with nonverbal skills frequently being more developed than verbal. Compared to monolingual autistic children, however, much less is known about how bilingualism affects intelligence in autism. The current study examined the intelligence profiles of 146 bilingual and 170 age- and gender-matched monolingual children with autism (6–17 years) using the Wechsler Intelligence Scales for Children-Third Edition, by tracking cluster profiles across children and by modeling verbal and nonverbal IQ performance in each cluster as a function of language experience (monolinguals vs bilinguals), socioeconomic status, and age. The results reveal that socioeconomic status, operationalized as mother’s years of education, mediated by bilingualism was strongly related to autistic children’s intelligence. Low-socioeconomic status bilingual autistic children exhibited better performance than their monolingual peers across both the verbal and nonverbal intelligence subtests. However, the difference found in the intelligence profiles between monolinguals and bilinguals belonging to high-socioeconomic status was limited to the Comprehension Wechsler Intelligence Scales for Children test, with high-socioeconomic status monolingual autistic children outperforming their bilingual peers. The findings highlight the importance of investigating bilingualism effects in relation to socioeconomic status in autism.Lay abstractPrevious research has suggested that bilingualism may improve cognition in children with autism, and that this boost may stem from improvement in executive functions. The Wechsler Intelligence Scales for Children are considered to be reliable and valid measures of intelligence when administered to autistic children. These measures have so far revealed unusual psychometric properties in monolingual autistic children, notably distinctive patterns of strengths and weaknesses and low inter-correlation among verbal and nonverbal IQ subtests. The way bilingualism affects the intellectual functioning of autistic children has not been explored yet. Nor has there been a satisfactory factor structure that explains monolingual and bilingual autistic children’s IQ performance in terms of individual factors, such as age and socioeconomic status. The current study examined the intelligence profiles of 316 bilingual and age- and gender-matched monolingual children with autism using the Wechsler Intelligence Scales for Children–Third Edition. The study applied clustering models to extract intelligence subtypes of autism, and mediation analyses to examine potential mediation effects of age and socioeconomic status on the children’s verbal and nonverbal IQ performance. The results support the mediational role of the children’s socioeconomic status in the association between bilingualism and intelligence. Low-socioeconomic status bilingual autistic children outperformed their monolingual peers on both verbal and nonverbal subtests, while the differences faded in medium-socioeconomic status and high-socioeconomic status children. The findings emphasize the positive effects of bilingualism on low-socioeconomic status autistic children’s intelligence and also highlight high-socioeconomic status as a factor that may mitigate discrepant patterns of strengths and weaknesses in monolingual children’s IQ performance.
      Citation: Autism
      PubDate: 2022-02-01T12:40:48Z
      DOI: 10.1177/13623613221075097
       
  • Adults with autism spectrum disorder and the criminal justice system: An
           investigation of prevalence of contact with the criminal justice system,
           risk factors and sex differences in a specialist assessment service

    • Free pre-print version: Loading...

      Authors: Charlotte E Blackmore, Emma L Woodhouse, Nicola Gillan, Ellie Wilson, Karen L Ashwood, Vladimira Stoencheva, Alexandra Nolan, Grainne M McAlonan, Dene M Robertson, Susannah Whitwell, Quinton Deeley, Michael C Craig, Janneke Zinkstok, Rob Wichers, Debbie Spain, Ged Roberts, Declan GM Murphy, Clodagh M Murphy, Eileen Daly
      First page: 2098
      Abstract: Autism, Ahead of Print.
      The behavioural and cognitive difficulties of some adults with autism spectrum disorder (ASD) may increase their risk of contact with the criminal justice system (CJS) as a potential suspect. There has been limited investigation of ASD and offending and available evidence is mixed. A retrospective review was completed of medical records of 1570 adults (17–75 years old) who were referred for an ASD assessment over a 17-year period (April 2003 to February 2020). Of the adults diagnosed with ASD, 23% had previous contact with the CJS. Being male or diagnosed with co-occurring attention-deficit hyperactivity disorder (ADHD) and/or psychotic disorder were risk factors for CJS contact. However, the rates of contact with the CJS or for specific offences in the ASD group were never higher than adults referred to our service but not diagnosed with ASD. We did not include a general population comparison group, therefore cannot say how rates of CJS contact in ASD compare with the general population. Further health services research for adults with ASD is warranted, as modifying the treatable risk factors (i.e. ADHD) could reduce contact with the CJS. In addition, joint working between CJS and mental health services could reduce the risk of adults with ASD having CJS contact.Lay abstractThere has been growing interest in offending and contact with the criminal justice system (CJS) by people with autism spectrum disorder (ASD). However, it is not clear whether people with ASD offend more than those without ASD. Studies have started to look at whether there are particular offences people with ASD are more likely to commit and whether there are any factors that can affect whether someone comes into contact with the CJS as a potential suspect. This study looked at the patients who attended an ASD diagnostic service over a 17-year period to see the rate of contact with the CJS of those who were diagnosed with ASD and whether there were any particular factors that might increase the risk of CJS contact. Nearly a quarter of the ASD group had some contact with the CJS as a potential suspect. Factors that seemed to increase whether someone with ASD was more likely to have contact with the CJS were being male, being diagnosed with ADHD, and being diagnosed with psychosis. This study is one of the largest studies to investigate the rate of CJS contact as a potential suspect in a sample of adults with ASD in an attempt to give a clearer picture of what might influence someone with ASD to engage in offending behaviour in order to try to see what mental health services can offer to reduce the likelihood of someone with ASD coming into contact with the CJS, for example, treatment for another condition or support.
      Citation: Autism
      PubDate: 2022-03-09T11:18:56Z
      DOI: 10.1177/13623613221081343
       
  • Factors associated with age of diagnosis in children with autism spectrum
           disorders: Report from a French cohort

    • Free pre-print version: Loading...

      Authors: Cécile Rattaz, Julie Loubersac, Cécile Michelon, Marie-Maude Geoffray, Marie-Christine Picot, Kerim Munir, Amaria Baghdadli
      First page: 2108
      Abstract: Autism, Ahead of Print.
      Early diagnosis of autism spectrum disorder is challenging due to its phenotypic and etiological heterogeneity, but critical for implementation of early interventions. We examined the age of autism spectrum disorder diagnosis in a sample of 554 children and adolescents enrolled in the ELENA cohort study in France with regard to the influences of child clinical characteristics, family antecedents, and socio-economic factors. The mean age of diagnosis was 4.9 years (±2.8 years) with prediction of diagnosis before 3 years of age related to co-occurring intellectual disability, higher autism spectrum disorder symptom severity, and lower communicative abilities. Children in low socio-economic status families tended to have earlier autism spectrum disorder diagnosis compared to those in high socio-economic status families, but they also had greater severity of intellectual impairment. The age of autism spectrum disorder diagnosis was not associated with the presence of an older sibling with autism spectrum disorder. The trend for an inverse relationship between socio-economic status and age of diagnosis suggests equity in the current diagnostic services in France where health coverage is universal and free. Nonetheless, better screening of more subtle/less severe forms of autism spectrum disorder is also needed, as well as further assessment of the link between co-occurrence of autism spectrum disorder and severity of intellectual impairment in lower socio-economic status families.Lay AbstractAutism spectrum disorder is an early onset neurodevelopmental disorder and diagnosis can be made as early as 18 months of age. Early diagnosis of autism spectrum disorder is critical as it leads to early intervention. Age of autism spectrum disorder diagnosis has been linked to the child profile as autism spectrum disorder is characterized by strong heterogeneity, but is also influenced by socio-economic factors. There is paucity of data on age of diagnosis of autism spectrum disorder in France. We therefore examined the age of autism spectrum disorder diagnosis in 554 children and adolescents enrolled in the ELENA cohort study with respect to the influences of child profile, family antecedents, and socio-economic factors. The mean age of diagnosis was 4.9 years (±2.8 years). Early diagnosis, before 3 years of age, was related to the co-occurrence of intellectual disability, higher autism spectrum disorder symptom severity, and lower communicative abilities. Children in low socio-economic status families tended to have an earlier diagnosis, but these children also had greater degree of intellectual impairment compared to children in high socio-economic status families. The age of autism spectrum disorder diagnosis was not associated with the presence of an older sibling with autism spectrum disorder. The observed current trend of an inverse relationship between socio-economic status and age of diagnosis of autism spectrum disorder suggests equitable access to autism spectrum disorder services in France where health coverage is universal and free. Better screening of more subtle/less severe forms of autism spectrum disorder is needed, as well as further assessment of the link between the co-occurrence of autism spectrum disorder and intellectual impairment in children in lower socio-economic status families.
      Citation: Autism
      PubDate: 2022-03-08T01:02:40Z
      DOI: 10.1177/13623613221077724
       
  • Loneliness in autistic adults: A systematic review

    • Free pre-print version: Loading...

      Authors: Kana Umagami, Anna Remington, Brynmor Lloyd-Evans, Jade Davies, Laura Crane
      First page: 2117
      Abstract: Autism, Ahead of Print.
      In this systematic review, we examined quantitative, qualitative and mixed methods studies on loneliness in autistic adults. A total of 1460 articles were identified, and 34 of these met inclusion criteria. Results demonstrated that (1) there is a paucity of qualitative data providing first-hand descriptions of loneliness from autistic adults; (2) few empirical studies have used reliable/valid measures of loneliness developed specifically for autistic adults, and in just one study was a measure of loneliness developed for, and validated in, autistic adults; (3) the collective dimension of loneliness (i.e. belonging in society) has been described by autistic adults, yet has not been investigated as frequently as the intimate (i.e. romantic relationships) or relational (i.e. friend/family relationships) dimensions of loneliness; (4) the factors associated with increased loneliness in autistic adults include autistic characteristics, anxiety, depression and suicidal ideation, negative experiences and learned helplessness, a lack of autism understanding and acceptance, sensory avoidance, camouflaging and unemployment; and (5) the factors associated with decreased loneliness in autistic adults include having relationships, participation in social skill interventions and/or experiencing fewer difficulties with social skills, positive views and acceptance of oneself, being female and time spent engaging in activities (e.g. online gaming). Directions for future research are considered.Lay abstractRecently, researchers have been interested in how autistic people experience loneliness. Yet, most of this research has focused on loneliness in autistic children and young people. We present the results of a systematic review on loneliness in autistic adults. A systematic review is a rigorous way of searching for all existing research on a topic and summarizing the findings about specific questions. We searched for all research published on this topic until 9 April 2021. We found 34 articles that investigated loneliness in autistic adults. This research showed that (1) there is fairly little research that has involved directly asking autistic adults about their first-hand experiences of loneliness (e.g. what loneliness feels like for them); (2) few research studies have used loneliness questionnaires specifically developed for autistic adults (this was attempted in just one research study); (3) collective loneliness (i.e. loneliness associated with how much an autistic person feels they ‘fit in’ to society) seems important to autistic adults but has not been investigated as commonly as other aspects of loneliness (e.g. loneliness associated with romantic relationships or friendships); (4) things that might increase loneliness in autistic adults include anxiety and depression, and a lack of autism understanding and acceptance, for example; and (5) things that might reduce loneliness in autistic adults include having relationships and self-acceptance, for example. In our article, we discuss the kinds of future research on loneliness in autistic adults that might be useful.
      Citation: Autism
      PubDate: 2022-03-08T12:58:45Z
      DOI: 10.1177/13623613221077721
       
  • Determinants of satisfaction with the detection process of autism in
           Europe: Results from the ASDEU study

    • Free pre-print version: Loading...

      Authors: Quentin Guillon, Sophie Baduel, Álvaro Bejarano-Martín, Ricardo Canal-Bedia, María MagÁn-Maganto, Clara FernÁndez-Álvarez, María Victoria Martín-Cilleros, María Cruz SÁnchez-Gómez, Patricia García-Primo, Mary Rose-Sweeney, Andrew Boilson, Renata LinertovÁ, Herbert Roeyers, Sara Van der Paelt, Diana Schendel, Christine Kloster Warberg, Susanne Cramer, Antonio Narzisi, Filippo Muratori, María Luisa Scattoni, Irma Moilanen, Anneli Yliherva, Evald Saemundsen, Sigridur Loa Jonsdottir, Magdalena Efrim-Budisteanu, Aurora Arghir, Sorina Mihaela Papuc, Astrid Vicente, Celia Rasga, Johanna Xenia Kafka, Luise Poustka, Oswald D Kothgassner, Rafal Kawa, Ewa Pisula, Tracey Sellers, Manuel Posada de la Paz, Bernadette Rogé
      First page: 2136
      Abstract: Autism, Ahead of Print.
      Satisfaction with the detection process of autism and its determinants was investigated using data from the Autism Spectrum Disorder in the European Union (2015–2018) network. A total of 1342 family members, including 1278 parents, completed an online survey collecting information about their experience and satisfaction with the early detection of autism in their child. Overall, the level of satisfaction varied considerably from one respondent to another. Difficulty in finding information about detection services, lack of professional guidance and support in response to first concerns, finding a diagnostic service on one’s own, and a delay of more than 4 months between the confirmation of concerns and the first appointment with a specialist were all experiences individually associated with greater odds of being less satisfied. Using a dominance analysis approach, we further identified professional guidance and support in response to first concerns as the most important predictor of the level of satisfaction. These findings highlight the aspects of the process that need to be improved to enhance the experience of the detection process and are therefore relevant to guide health administrations toward actions to be implemented to this effect.Lay abstractProfessional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one’s own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent–professional relationship in the detection process and have important practical implications for health administrations to improve the detection process.
      Citation: Autism
      PubDate: 2022-03-09T11:16:54Z
      DOI: 10.1177/13623613221080318
       
  • ‘It’s being a part of a grand tradition, a grand counter-culture which
           involves communities’: A qualitative investigation of autistic community
           connectedness

    • Free pre-print version: Loading...

      Authors: Monique Botha, Bridget Dibb, David M Frost
      First page: 2151
      Abstract: Autism, Ahead of Print.
      Autistic people report greater comfort socialising and easier communication with each other. Despite autism being stereotypically associated with lack of social motivation, an autistic community has been described briefly in the literature but is not well understood. Autistic community connectedness may play a role in promoting wellbeing for autistic people. This qualitative study involved interviewing autistic individuals (N = 20) in-person, via a video-based platform, a text-based platform or over email to investigate autistic community connectedness. Critical grounded theory tools were used to collect and analyse the data. There were three elements of autistic community connectedness: belongingness, social connectedness and political connectedness. Belongingness referred to the sense of similarity that autistic people experienced with each other. Social connectedness referred to specific friendship participants formed with other autistic people. Political connectedness referred to a connectedness to the political or social equality goals of the autistic community. Participants described the benefits of autistic community connectedness as being increased self-esteem, a sense of direction and a sense of community not experienced elsewhere. Lack of connectedness involved ambivalence with an autistic identity and/or feelings of internalised stigma. Experiences of autistic community connectedness may have implications for autistic people’s wellbeing, as well as how they cope with minority stress.Lay abstractA sense of being connected to other autistic people has been reported anecdotally. Friendships and connectedness may be important to autistic people and beneficial for their wellbeing. Our research aimed to understand the autistic community by interviewing 20 autistic people about their experiences of being connected to other autistic people. Participants were interviewed in person, over video, using a text-based software to type or over email. Participants detailed three parts of autistic community connectedness: a sense of belonging, social connection with autistic friends and political connectedness. The friendships autistic people had with one another were deemed to be very important to participants because it gave them confidence, provided companionship and made them happy. Some participants did not experience connectedness to the autistic community. These participants also found autism to be less important to their identity and had fewer positive feelings about being autistic. This research is important as it raises awareness that community connectedness is viewed as important to this group. It is possible that community connectedness may help protect the mental health of autistic people when they face stigma or negative life experiences in society.
      Citation: Autism
      PubDate: 2022-03-23T09:24:56Z
      DOI: 10.1177/13623613221080248
       
  • Understanding feeding problems in autistic children: Exploring the
           interplay between internalizing symptoms and sensory features

    • Free pre-print version: Loading...

      Authors: Alessandro Crippa, Paola Colombo, Valentina De Cosmi, Alessandra Mazzocchi, Silvia Scaglioni, Giulia Carla Immacolata Spolidoro, Silvia Bettocchi, Veronica D’Oria, Nicole Viganò, Elisa Mani, Massimo Molteni, Carlo Agostoni
      First page: 2165
      Abstract: Autism, Ahead of Print.
      Feeding/behavior problems are highly prevalent in autistic children. This study aimed to explore the interplay between autistic features, sensory processing patterns, emotional/behavioral difficulties, and feeding problems in children with a clinical diagnosis of autism spectrum disorder. Ninety-nine children aged 1.5–5 years were assessed using the Children’s Eating Behavior Inventory (CEBI), the Child Behavior Checklist, the Revised Sensory Profile—Second Edition (SP-2), and the Food Frequency Questionnaire. The sample was divided into two subgroups based on the presence of feeding behavior problems as rated by parents on the CEBI. Children with feeding problems showed more severe internalizing symptoms and were more reactive to sensory stimuli than children without feeding problems. We also found a significant relationship between higher levels of autistic features and greater feeding behavior problems. A mediation analysis model indicated that this relationship was mediated by sensory processing, as reflected by SP-2 quadrants scores. Although preliminary, these findings suggest that children with higher levels of autistic features could be at greater risk of developing feeding behavior problems only if they also have a higher sensory sensitivity to environmental stimuli.Lay abstractThis study adds to a growing body of research documenting feeding problems in autistic children. Our results indicate that children aged 1.5–5 years with feeding problems may present with elevated internalizing difficulties and alterations in sensory processing when compared to same-age children without feeding problems. Our study also proposes that sensory processing may be an important, mediating factor in the relationship between autism features and feeding problems. The present work suggests, therefore, that implementers should thoroughly consider the sensory profile of autistic children prior to intervening on feeding behaviors. In particular, based on these preliminary findings, feeding interventions could benefit from environments designed to support children who can find them noisy and overwhelming.
      Citation: Autism
      PubDate: 2022-03-05T09:18:33Z
      DOI: 10.1177/13623613221080227
       
  • Supporting peer engagement for low-income preschool students with autism
           spectrum disorder during academic instruction: A pilot randomized trial

    • Free pre-print version: Loading...

      Authors: Jonathan L Panganiban, Stephanie Y Shire, Justin Williams, Connie Kasari
      First page: 2175
      Abstract: Autism, Ahead of Print.
      Schools are the portal through which many children with autism spectrum disorder access early intervention. Collaborating with teachers can be an effective way to implement evidence-based practices. In this study, teachers learned to embed strategies from the Joint Attention, Symbolic Play, Engagement, and Regulation intervention into the standard preschool curriculum. Twelve schools with special education preschool classrooms for students with moderate to severe disabilities from under-resourced neighborhoods were randomized to augment their curriculum with Joint Attention, Symbolic Play, Engagement, and Regulation strategies or continue the standard curriculum. Teachers’ strategy implementation, children’s time on task, and social communication were examined before and after completing the intervention phase. Teachers in the Joint Attention, Symbolic Play, Engagement, and Regulation group implemented more Joint Attention, Symbolic Play, Engagement, and Regulation strategies than the control group after the intervention phase. Children in both groups increased time on task during teacher-led small group instruction. Children in the Joint Attention, Symbolic Play, Engagement, and Regulation group were more likely to be engaged with peers during small group instruction at the end of the intervention phase. Children from both groups improved in standardized measures of joint attention, requesting, expressive language, and receptive language. Training teachers to embed Joint Attention, Symbolic Play, Engagement, and Regulation strategies into small group instruction can help facilitate peer engagement, providing children more opportunities for peer socialization.Lay abstractChildren with autism spectrum disorder attending special education preschool classrooms may not receive support that addresses their core challenges, such as engagement and social communication. There are interventions designed to target these core challenges, like the play-based intervention known as Joint Attention, Symbolic Play, Engagement, and Regulation. Embedding strategies from an intervention like Joint Attention, Symbolic Play, Engagement, and Regulation into more traditional academic activities can help teachers target engagement and social communication throughout the school day. In the current study, we collaborated with special education preschool teachers to embed Joint Attention, Symbolic Play, Engagement, and Regulation strategies during small group time for moderate to severe disability students with autism spectrum disorder, 3–5 years of age. Compared to teachers implementing the standard preschool curriculum, teachers trained in Joint Attention, Symbolic Play, Engagement, and Regulation strategies effectively embedded these strategies in their small group activities, and their students were more likely to engage with peers during these activities. Supporting teachers to embed targeted strategies in academic activities can help them provide students more opportunities to engage with peers during the school day. Teachers can support their autistic students to interact appropriately with their peers. Unlike interventions that train peers to act as a teacher, embedding Joint Attention, Symbolic Play, Engagement, and Regulation strategies during small group academic activities facilitates naturalistic social interactions for autistic students.
      Citation: Autism
      PubDate: 2022-04-14T09:03:28Z
      DOI: 10.1177/13623613221085339
       
  • Co-occurring ADHD symptoms in autistic adults are associated with less
           independence in daily living activities and lower subjective quality of
           life

    • Free pre-print version: Loading...

      Authors: Benjamin E Yerys, Goldie A McQuaid, Nancy Raitano Lee, Gregory L Wallace
      First page: 2188
      Abstract: Autism, Ahead of Print.
      Outcomes for autistic adults are generally poor across multiple foundational metrics, including activities of daily living and quality of life. Co-occurring psychiatric conditions contribute to these poor outcomes. Attention-deficit/hyperactivity disorder is one of the most common co-occurring conditions among autistic individuals; however, we know little about the association of attention-deficit/hyperactivity disorder symptoms with autistic adult outcomes. A total of 724 autistic adults (18–83 years; 58% female) recruited via Simons Foundation Powering Autism Research (SPARK) Research Match completed questionnaires on demographics, co-occurring attention-deficit/hyperactivity disorder symptoms, activities of daily living, and subjective quality of life. After controlling for age, birth-sex, socioeconomic status, and autistic traits, attention-deficit/hyperactivity disorder symptoms explained an additional 2%−10% of variance across activities of daily living and all domains of subjective quality of life. This is the first study to demonstrate that autistic adults who rated themselves as having more attention-deficit/hyperactivity disorder symptoms also rated themselves as less independent in activities of daily living and experiencing a lower subjective quality of life. These findings highlight that additional research and better supports for co-occurring attention-deficit/hyperactivity disorder symptoms may be critical to enhancing independence and quality of life for autistic adults.Lay abstractOutcomes for autistic adults are generally poor, including activities of daily living and self-ratings of quality of life. Co-occurring psychiatric conditions contribute to these poor outcomes. Attention-deficit/hyperactivity disorder is one of the most common co-occurring conditions in autistic individuals. However, we know little about the association between attention-deficit/hyperactivity disorder symptoms and outcomes in autistic adults. A total of 724 autistic adults (18–83 years; 58% female) recruited from the Simons Foundation Powering Autism Research participant registry completed questionnaires on demographics, co-occurring psychiatric conditions, activities of daily living, and subjective quality of life. Autistic adults who rated themselves as having more attention-deficit/hyperactivity disorder symptoms also rated themselves as having less independence in activities of daily living and a lower quality of life. This is the first study to show these relationships in autistic adults. These findings highlight that additional research and better supports for co-occurring attention-deficit/hyperactivity disorder symptoms may be critical to improving independence and quality of life for autistic adults.
      Citation: Autism
      PubDate: 2022-08-02T09:58:25Z
      DOI: 10.1177/13623613221112198
       
 
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: 44.197.108.169
 
Home (Search)
API
About JournalTOCs
News (blog, publications)
JournalTOCs on Twitter   JournalTOCs on Facebook

JournalTOCs © 2009-