Subjects -> HEALTH AND SAFETY (Total: 1565 journals)
    - CIVIL DEFENSE (22 journals)
    - DRUG ABUSE AND ALCOHOLISM (86 journals)
    - HEALTH AND SAFETY (743 journals)
    - HEALTH FACILITIES AND ADMINISTRATION (390 journals)
    - OCCUPATIONAL HEALTH AND SAFETY (109 journals)
    - PHYSICAL FITNESS AND HYGIENE (133 journals)
    - WOMEN'S HEALTH (82 journals)

HEALTH FACILITIES AND ADMINISTRATION (390 journals)                  1 2 | Last

Showing 1 - 200 of 401 Journals sorted alphabetically
Academy of Health Care Management Journal     Full-text available via subscription   (Followers: 13)
ACI Open     Open Access  
Acta Bioquimica Clinica Latinoamericana     Open Access   (Followers: 1)
Administration and Policy in Mental Health and Mental Health Services Research     Partially Free   (Followers: 21)
Adnan Menderes Üniversitesi Sağlık Bilimleri Fakültesi Dergisi     Open Access   (Followers: 1)
Advanced Healthcare Materials     Hybrid Journal   (Followers: 17)
Advances in Dual Diagnosis     Hybrid Journal   (Followers: 48)
Advances in Human Factors/Ergonomics     Full-text available via subscription   (Followers: 26)
Advances in Medical Education and Practice     Open Access   (Followers: 34)
Advances in Mental Health and Intellectual Disabilities     Hybrid Journal   (Followers: 89)
Advances in Nursing Science     Hybrid Journal   (Followers: 43)
Advances in Simulation     Open Access   (Followers: 7)
African Journal of Primary Health Care & Family Medicine     Open Access   (Followers: 6)
AIDS and Behavior     Hybrid Journal   (Followers: 18)
American Journal of Hospice and Palliative Medicine     Hybrid Journal   (Followers: 48)
American Journal of Managed Care     Full-text available via subscription   (Followers: 13)
Analytical Methods     Full-text available via subscription   (Followers: 14)
Anthropologie et santé     Open Access   (Followers: 5)
Applied Clinical Informatics     Hybrid Journal   (Followers: 5)
Applied Health Economics and Health Policy     Full-text available via subscription   (Followers: 24)
Applied Research in Quality of Life     Hybrid Journal   (Followers: 13)
Archives of Public Health     Open Access   (Followers: 13)
Asian Journal of Health     Open Access   (Followers: 4)
Australasian Journal of Paramedicine     Open Access   (Followers: 7)
Australian and New Zealand Journal of Public Health     Hybrid Journal   (Followers: 17)
Australian Health Review     Hybrid Journal   (Followers: 7)
Australian Journal of Primary Health     Hybrid Journal  
Australian Journal of Rural Health     Hybrid Journal   (Followers: 18)
Autism     Hybrid Journal   (Followers: 349)
Avicenna     Open Access   (Followers: 3)
Balint Journal     Hybrid Journal   (Followers: 2)
Bereavement Care     Hybrid Journal   (Followers: 13)
BJR     Hybrid Journal   (Followers: 21)
BMC Medical Informatics and Decision Making     Open Access   (Followers: 25)
BMC Oral Health     Open Access   (Followers: 7)
BMJ Leader     Hybrid Journal  
BMJ Quality & Safety     Hybrid Journal   (Followers: 69)
BMJ Supportive & Palliative Care     Hybrid Journal   (Followers: 50)
British Journal of Healthcare Assistants     Full-text available via subscription   (Followers: 33)
British Journal of Healthcare Management     Full-text available via subscription   (Followers: 19)
British Journal of Hospital Medicine     Full-text available via subscription   (Followers: 18)
British Journal of Nursing     Full-text available via subscription   (Followers: 294)
British Journal of School Nursing     Full-text available via subscription   (Followers: 14)
Bruce R Hopkins' Nonprofit Counsel     Hybrid Journal   (Followers: 2)
Building Better Healthcare     Full-text available via subscription   (Followers: 1)
Canadian Nurse     Full-text available via subscription   (Followers: 8)
Cardiac Electrophysiology Clinics     Full-text available via subscription   (Followers: 1)
Children and Schools     Hybrid Journal   (Followers: 8)
Chinese Medical Record English Edition     Hybrid Journal  
CIN : Computers Informatics Nursing     Hybrid Journal   (Followers: 11)
Clinical Audit     Open Access   (Followers: 4)
Clinics and Practice     Open Access  
Cognition, Technology & Work     Hybrid Journal   (Followers: 14)
Communication & Medicine     Hybrid Journal   (Followers: 5)
Community Based Medical Journal     Open Access  
Conflict and Health     Open Access   (Followers: 8)
Contemporary Nurse : A Journal for the Australian Nursing Profession     Hybrid Journal   (Followers: 7)
Critical Public Health     Hybrid Journal   (Followers: 26)
Culture, Health & Sexuality: An International Journal for Research, Intervention and Care     Hybrid Journal   (Followers: 17)
Current Opinion in Supportive and Palliative Care     Hybrid Journal   (Followers: 28)
Das Gesundheitswesen     Hybrid Journal   (Followers: 10)
Death Studies     Hybrid Journal   (Followers: 22)
Dental Nursing     Full-text available via subscription   (Followers: 3)
Disaster Health     Hybrid Journal   (Followers: 1)
DoctorConsult - The Journal. Wissen für Klinik und Praxis     Full-text available via subscription  
Droit, Déontologie & Soin     Full-text available via subscription   (Followers: 3)
E-Health Telecommunication Systems and Networks     Open Access   (Followers: 2)
East and Central African Journal of Surgery     Open Access  
Éducation thérapeutique du patient     Full-text available via subscription   (Followers: 1)
eGEMs     Open Access  
Emergency Radiology     Hybrid Journal   (Followers: 10)
Enfermería Clínica     Full-text available via subscription   (Followers: 3)
Epidemiologic Methods     Hybrid Journal   (Followers: 4)
Ergonomics     Hybrid Journal   (Followers: 24)
Escola Anna Nery     Open Access   (Followers: 1)
Ethnicity & Health     Hybrid Journal   (Followers: 14)
European Journal of Public Health     Hybrid Journal   (Followers: 27)
European Journal of Work and Organizational Psychology     Hybrid Journal   (Followers: 35)
European Research in Telemedicine / La Recherche Européenne en Télémédecine     Full-text available via subscription   (Followers: 2)
Evaluation & the Health Professions     Hybrid Journal   (Followers: 10)
Evidence-Based Nursing     Hybrid Journal   (Followers: 74)
Evolution, Medicine, and Public Health     Open Access   (Followers: 12)
Expert Opinion on Therapeutic Patents     Hybrid Journal   (Followers: 12)
Families, Systems, & Health     Full-text available via subscription   (Followers: 9)
Family Practice Management     Full-text available via subscription   (Followers: 5)
Focus on Health Professional Education : A Multi-disciplinary Journal     Full-text available via subscription   (Followers: 7)
Frontiers in Public Health Services and Systems Research     Open Access   (Followers: 5)
Future Hospital Journal     Full-text available via subscription   (Followers: 2)
Gastrointestinal Nursing     Full-text available via subscription   (Followers: 5)
Geron     Full-text available via subscription  
Global & Regional Health Technology Assessment     Open Access   (Followers: 1)
Global Health Action     Open Access   (Followers: 12)
Global Health Management Journal (GHMJ)     Open Access   (Followers: 2)
Global Health Research and Policy     Open Access   (Followers: 4)
Global Journal of Hospital Administration     Open Access   (Followers: 1)
Global Public Health: An International Journal for Research, Policy and Practice     Hybrid Journal   (Followers: 21)
Globalization and Health     Open Access   (Followers: 9)
Handbook of Practice Management     Hybrid Journal   (Followers: 2)
Health     Open Access   (Followers: 5)
Health & Social Care In the Community     Hybrid Journal   (Followers: 54)
Health : An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine     Hybrid Journal   (Followers: 16)
Health and Interprofessional Practice     Open Access   (Followers: 6)
Health and Technology     Hybrid Journal   (Followers: 4)
Health Care Analysis     Hybrid Journal   (Followers: 17)
Health Care Management Review     Hybrid Journal   (Followers: 16)
Health Economics     Hybrid Journal   (Followers: 59)
Health Expectations     Open Access   (Followers: 16)
Health Facilities Management     Free   (Followers: 10)
Health Informatics Journal     Hybrid Journal   (Followers: 28)
Health Information : Jurnal Penelitian     Open Access   (Followers: 6)
Health Information Science and Systems     Open Access   (Followers: 4)
Health Policy and Management     Open Access   (Followers: 7)
Health Policy and Planning     Hybrid Journal   (Followers: 27)
Health Professions Education     Open Access   (Followers: 3)
Health Promotion International     Hybrid Journal   (Followers: 28)
Health Promotion Practice     Hybrid Journal   (Followers: 18)
Health Psychology     Full-text available via subscription   (Followers: 62)
Health Psychology Review     Hybrid Journal   (Followers: 46)
Health Reform Observer : Observatoire des Réformes de Santé     Open Access   (Followers: 2)
Health Research Policy and Systems     Open Access   (Followers: 16)
Health Science Journal of Indonesia     Open Access   (Followers: 2)
Health Services Research and Managerial Epidemiology     Open Access   (Followers: 3)
Health, Risk & Society     Hybrid Journal   (Followers: 14)
Healthcare : The Journal of Delivery Science and Innovation     Full-text available via subscription   (Followers: 1)
Healthcare Financial Management     Full-text available via subscription   (Followers: 4)
Healthcare in Low-resource Settings     Open Access   (Followers: 1)
Healthcare Management Forum     Hybrid Journal   (Followers: 8)
Healthcare Policy / Politiques de Santé     Full-text available via subscription   (Followers: 5)
Healthcare Quarterly     Full-text available via subscription   (Followers: 10)
Healthcare Risk Management     Full-text available via subscription   (Followers: 5)
HealthcarePapers     Full-text available via subscription   (Followers: 2)
Hispanic Health Care International     Full-text available via subscription  
História, Ciências, Saúde - Manguinhos     Open Access   (Followers: 2)
Hong Kong Journal of Social Work, The     Hybrid Journal   (Followers: 3)
Hospital     Open Access   (Followers: 3)
Hospital a Domicilio     Open Access  
Hospital Infection Control & Prevention     Full-text available via subscription   (Followers: 15)
Hospital Medicine Clinics     Full-text available via subscription   (Followers: 2)
Hospital Peer Review     Full-text available via subscription   (Followers: 1)
Hospital Pharmacy     Partially Free   (Followers: 18)
Hospital Practice     Hybrid Journal   (Followers: 2)
Hospital Practices and Research     Open Access  
Housing, Care and Support     Hybrid Journal   (Followers: 9)
Human Factors : The Journal of the Human Factors and Ergonomics Society     Full-text available via subscription   (Followers: 39)
Human Resources for Health     Open Access   (Followers: 12)
ICU Director     Hybrid Journal  
Ids Practice Papers     Hybrid Journal  
IEEE Pulse     Hybrid Journal   (Followers: 5)
IISE Transactions on Healthcare Systems Engineering     Hybrid Journal   (Followers: 2)
Independent Nurse     Full-text available via subscription   (Followers: 3)
Index de Enfermeria     Open Access   (Followers: 7)
Indian Journal of Public Health     Open Access   (Followers: 1)
Informatics for Health and Social Care     Hybrid Journal   (Followers: 10)
Innovation and Entrepreneurship in Health     Open Access   (Followers: 1)
INQUIRY : The Journal of Health Care Organization, Provision, and Financing     Open Access   (Followers: 1)
Interface - Comunicação, Saúde, Educação     Open Access   (Followers: 1)
International Archives of Health Sciences     Open Access  
International Journal for Equity in Health     Open Access   (Followers: 9)
International Journal for Quality in Health Care     Hybrid Journal   (Followers: 41)
International Journal of Care Coordination     Hybrid Journal   (Followers: 7)
International Journal of Computers in Healthcare     Hybrid Journal   (Followers: 3)
International Journal of Electronic Healthcare     Hybrid Journal   (Followers: 2)
International Journal of Environmental Research and Public Health     Open Access   (Followers: 27)
International Journal of Health Administration and Education Congress (Sanitas Magisterium)     Open Access  
International Journal of Health Care Quality Assurance     Hybrid Journal   (Followers: 15)
International Journal of Health Economics and Management     Hybrid Journal   (Followers: 13)
International Journal of Health Governance     Hybrid Journal   (Followers: 27)
International Journal of Health Planning and Management     Hybrid Journal   (Followers: 7)
International Journal of Health Sciences Education     Open Access   (Followers: 2)
International Journal of Health Services Research and Policy     Open Access   (Followers: 1)
International Journal of Health System and Disaster Management     Open Access   (Followers: 3)
International Journal of Healthcare     Open Access   (Followers: 1)
International Journal of Healthcare Technology and Management     Hybrid Journal   (Followers: 7)
International Journal of Hospital Research     Open Access  
International Journal of Human Factors and Ergonomics     Hybrid Journal   (Followers: 20)
International Journal of Human Rights in Healthcare     Hybrid Journal   (Followers: 5)
International Journal of Medicine and Public Health     Open Access   (Followers: 6)
International Journal of Migration, Health and Social Care     Hybrid Journal   (Followers: 12)
International Journal of Occupational and Environmental Medicine, The     Open Access   (Followers: 15)
International Journal of Palliative Nursing     Full-text available via subscription   (Followers: 32)
International Journal of Positive Behavioural Support     Full-text available via subscription   (Followers: 38)
International Journal of Prisoner Health     Hybrid Journal   (Followers: 14)
International Journal of Privacy and Health Information Management     Full-text available via subscription   (Followers: 3)
International Journal of Public and Private Healthcare Management and Economics     Full-text available via subscription   (Followers: 4)
International Journal of Qualitative Studies on Health and Well-Being     Open Access   (Followers: 22)
International Journal of Reliable and Quality E-Healthcare     Full-text available via subscription   (Followers: 1)
International Journal of Research in Nursing     Open Access   (Followers: 12)
International Journal of Technology Assessment in Health Care     Hybrid Journal   (Followers: 16)
International Journal of Telemedicine and Clinical Practices     Hybrid Journal   (Followers: 5)
International Journal of Telework and Telecommuting Technologies     Full-text available via subscription  
International Journal of Therapy and Rehabilitation     Full-text available via subscription   (Followers: 42)
International Journal of User-Driven Healthcare     Full-text available via subscription   (Followers: 1)
International Journal on Disability and Human Development     Hybrid Journal   (Followers: 23)
Irish Journal of Paramedicine     Open Access   (Followers: 3)
JAAPA     Hybrid Journal   (Followers: 3)
Jaffna Medical Journal     Open Access  
Joint Commission Journal on Quality and Patient Safety     Hybrid Journal   (Followers: 41)
Journal for Healthcare Quality     Hybrid Journal   (Followers: 28)
Journal of Advanced Nursing     Hybrid Journal   (Followers: 250)
Journal of Advances in Medical Education & Professionalism     Open Access   (Followers: 10)

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Similar Journals
Journal Cover
Autism
Journal Prestige (SJR): 1.739
Citation Impact (citeScore): 4
Number of Followers: 349  
 
  Hybrid Journal Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1362-3613 - ISSN (Online) 1461-7005
Published by Sage Publications Homepage  [1135 journals]
  • Associations between social camouflaging and internalizing symptoms in
           autistic and non-autistic adolescents
    • Authors: Courtney J Bernardin, Timothy Lewis, Debora Bell, Stephen Kanne
      Abstract: Autism, Ahead of Print.
      Autistic individuals experience higher rates of psychiatric comorbidities than their peers. Camouflaging, the process through which individuals hide autistic traits, can be detrimental to mental health. This may be particularly true for autistic females, although research on sex differences in the relationship between camouflaging and mental health has focused on adults. The purpose of this study was to extend previous research on camouflaging and mental health through examining age, sex, autism diagnosis, and camouflaging as predictors of depression, anxiety, and stress levels in autistic and non-autistic adolescents. One hundred forty adolescents ages 13–18 years (62 non-autistic, 58 female) completed an online survey including measures of camouflaging, autistic traits, and internalizing symptoms. Hierarchical linear regression was used to examine age, sex, diagnosis, and camouflaging as predictors of internalizing symptoms. Findings suggest that level of camouflaging is an important predictor of depression, anxiety, and stress in autistic and non-autistic adolescents and that camouflaging may be particularly distressing for females, regardless of diagnosis. These findings inform our understanding of camouflaging and its consequences and point to future directions for support for autistic and non-autistic adolescents. Clinicians may consider interventions targeting social skills, self-acceptance, and self-esteem to reduce possible negative effects of camouflaging.Lay abstractAutistic individuals have more mental health difficulties than non-autistic individuals. It is important to understand why this might be. Research has shown that camouflaging, or strategies used to hide autistic traits, might contribute to mental health difficulties in autistic adults. We examined whether this was also the case for autistic adolescents. This study included 140 adolescents ages 13–18 years (62 non-autistic, 58 female). All participants answered questions about camouflaging, autistic traits, and mental health difficulties. We found that autistic and non-autistic adolescents who reported higher levels of camouflaging also reported higher levels of depression, anxiety, and stress. We also found that camouflaging might be particularly stressful for females. These findings improve our understanding of camouflaging during adolescence and point to potential ways to support autistic adolescents, such as help with social skills, self-acceptance, and self-esteem. The findings also support the importance of increasing autism acceptance in the general population.
      Citation: Autism
      PubDate: 2021-03-12T11:20:57Z
      DOI: 10.1177/1362361321997284
       
  • Autistic differences in the temporal dynamics of social attention
    • Authors: Nicholas Hedger, Bhismadev Chakrabarti
      Abstract: Autism, Ahead of Print.
      Individuals with autism spectrum disorders typically exhibit reduced visual attention towards social stimuli relative to neurotypical individuals. Importantly, however, attention is not a static process, and it remains unclear how such effects may manifest over time. Exploring these momentary changes in gaze behaviour can more clearly illustrate how individuals respond to social stimuli and provide insight into the mechanisms underlying reduced social attention in autism spectrum disorder. Using a simple passive eye-tracking task with competing presentations of social and nonsocial stimuli, we examine the different ways in which attention to social stimuli evolves over time in neurotypical adults and adults with and autism spectrum disorders. Our temporal modelling of gaze behaviour revealed divergent temporal profiles of social attention in neurotypical and observers with autism. Neurotypical data showed an initial increase in social attention, a ‘decay’ and subsequent ‘recovery’ after prolonged viewing. By contrast, in individuals with autism spectrum disorder, social attention decayed over time in a linear fashion without recovery after prolonged viewing. We speculate that the ‘gaze cascade’ effect that maintains selection of social stimuli in neurotypical observers is disrupted in individuals with high autistic traits. Considering these temporal components of gaze behaviour may enhance behavioural phenotypes and theories of social attention in autism spectrum disorder.Lay abstractOne behaviour often observed in individuals with autism is that they tend to look less towards social stimuli relative to neurotypical individuals. For instance, many eye-tracking studies have shown that individuals with autism will look less towards people and more towards objects in scenes. However, we currently know very little about how these behaviours change over time. Tracking these moment-to-moment changes in looking behaviour in individuals with autism can more clearly illustrate how they respond to social stimuli. In this study, adults with and without autism were presented with displays of social and non-social stimuli, while looking behaviours were measured by eye-tracking. We found large differences in how the two groups looked towards social stimuli over time. Neurotypical individuals initially showed a high probability of looking towards social stimuli, then a decline in probability, and a subsequent increase in probability after prolonged viewing. By contrast, individuals with autism showed an initial increase in probability, followed by a continuous decline in probability that did not recover. This pattern of results may indicate that individuals with autism exhibit reduced responsivity to the reward value of social stimuli. Moreover, our data suggest that exploring the temporal nature of gaze behaviours can lead to more precise explanatory theories of attention in autism.
      Citation: Autism
      PubDate: 2021-03-12T05:26:44Z
      DOI: 10.1177/1362361321998573
       
  • Parenting stress in autism spectrum disorder may account for discrepancies
           in parent and clinician ratings of child functioning
    • Authors: Jessica M Schwartzman, Antonio Y Hardan, Grace W Gengoux
      Abstract: Autism, Ahead of Print.
      Elevated parenting stress among parents of children with autism spectrum disorder is well-documented; however, there is limited information about variability in parenting stress and relationships with parent ratings of child functioning. The aim of this study was to explore profiles of parenting stress among 100 parents of young children with autism spectrum disorder enrolled in two clinical trials and potential relationships between parenting stress and parent ratings of child functioning at the baseline timepoint. Secondary aims examined differential patterns of association between parenting stress profiles and parent versus clinician ratings of child functioning. A k-means cluster analysis yielded three different profiles of parenting stress (normal, elevated, and clinically significant) using scores on the Parenting Stress Index–Short Form. One-way analyses of variance revealed differential patterns of parent ratings across the three parenting stress profiles on certain domains of child functioning (e.g. problem behaviors and social impairment) and family empowerment, but similar ratings of child receptive and expressive language abilities. Clinicians blinded to study conditions also rated child functioning, but clinician ratings did not differ by parenting stress profile. Findings emphasize the importance of identifying parenting stress profiles and understanding their relationship with parent ratings, with implications for interpreting parent-report measures and measuring child response in treatment trials.Lay abstractElevated parenting stress among parents of children with autism spectrum disorder is well-documented; however, there is limited information about differences in parenting stress and potential relationships with parent ratings of child functioning. The aim of this study was to explore profiles of parenting stress among 100 parents of young children with autism spectrum disorder enrolled in two clinical trials and to explore relationships between parenting stress level and parent ratings of child functioning before treatment. Secondary aims examined differential patterns of association between parenting stress profiles and parent versus clinician ratings of child functioning. We show that stress may influence parent ratings of certain child behaviors (e.g. problem behaviors) and not others (e.g. language), yet clinician ratings of these same children do not differ. This new understanding of parenting stress has implications for parent-rated measures, tracking treatment outcome, and the design of clinical trials.
      Citation: Autism
      PubDate: 2021-03-11T06:34:15Z
      DOI: 10.1177/1362361321998560
       
  • A multimethod approach to assessing motor skills in boys and girls with
           autism spectrum disorder
    • Authors: Alessandro Crippa, Francesco Craig, Silvia Busti Ceccarelli, Maddalena Mauri, Silvia Grazioli, Nicoletta Scionti, Alice Cremascoli, Camilla Ferrante, Chiara Visioli, Gian Marco Marzocchi, Massimo Molteni, Maria Nobile
      Abstract: Autism, Ahead of Print.
      Motor abnormalities are highly prevalent in children with autism spectrum disorder and are strongly predictive of adaptive functioning. Despite the documented sex bias in the prevalence of the disorder, the impact of sex differences on motor abnormalities has been overlooked. The goal of this study was to investigate differences in the motor profile of boys and girls with autism spectrum disorder aged 3–11 years using a multimethod approach. Ninety-eight children with autism spectrum disorder and 98 typically developing children were assessed using the Movement Assessment Battery for Children 2, the Developmental Coordination Disorder Questionnaire, and the kinematic analysis of a reach-to-drop task. Results from principal components analysis on reach-to-drop-dependent measures indicated four components, accounting for kinematic parameters of the motor task. Irrespective of sex, children with autism spectrum disorder showed worse scores on Movement Assessment Battery for Children 2 and Developmental Coordination Disorder Questionnaire subscales than typically developing children. Interestingly, a diagnosis-by-sex interaction was found on a kinematic feature measured in the last part of the movement, with girls with autism spectrum disorder presenting altered motor anticipation. Although preliminary, these findings suggested that sex-related nuances in motor functioning of children with autism spectrum disorder could be insufficiently captured by existing motor measures.Lay abstractMotor peculiarities are often reported in children with autism spectrum disorder and may predict subsequent adaptive functioning and quality of life. Although the sex bias in the prevalence of the disorder is well documented, little is known about differences in motor profile in males and females with autism spectrum disorder. Our goal was to study differences in motor functioning of boys and girls with autism spectrum disorder aged 3–11 years compared with typically developing children. Their motor performances were evaluated using a multimethod approach, including standardized motor tests, caregiver reports, and a detailed motion capture analysis of a simple reach-to-drop movement. We found that, irrespective of sex, children with autism spectrum disorder had worse scores than typically developing children on standardized tests and on caregiver reports. Interestingly, girls with autism spectrum disorder, but not boys, presented altered motor anticipation in reach-to-drop. Our findings emphasize the need for more sex-specific assessment of motor function in autism spectrum disorder.
      Citation: Autism
      PubDate: 2021-03-03T04:25:34Z
      DOI: 10.1177/1362361321995634
       
  • Feeding and eating problems in children and adolescents with autism: A
           scoping review
    • Authors: Jessica Baraskewich, Kristin M von Ranson, Adam McCrimmon, Carly A McMorris
      Abstract: Autism, Ahead of Print.
      Feeding problems, such as picky eating and food avoidance, are common in youth with autism. Other feeding and eating problems (e.g. disordered eating, fear of trying new foods, and insistence on specific food presentation) are also common in this population. This scoping review describes the nature and extent of feeding and eating problems in autistic youth and reports characteristics of autistic youth who experience such issues. Thirty-four studies were included in the current review, with almost all studies (91%) investigating feeding problems. Only 9% of studies examined concern with weight, shape, and/or body image, but several authors noted that disordered eating attitudes and behaviors may occur more frequently in those with autism than their peers without autism. No common individual characteristics (e.g. cognitive functioning and autism symptom severity) were identified for youth who experience feeding or eating problems. Although differentiating “feeding” from “eating” problems is critical for accurate identification and treatment of these issues, the existing literature has failed to do so. We propose that in future research “eating problems” be used when behaviors involve preoccupation with food, eating, or body image, and “feeding problems” be used when such preoccupation is absent.Lay abstractFeeding problems, such as picky eating and food avoidance, are common in youth with autism. Other, broader difficulties with feeding and eating (eating disorder symptoms such as restricting food intake or preoccupation with body shape or weight and insistence on specific food presentation) are also common in autistic individuals. Here, we describe the nature and extent of feeding and eating problems in youth with autism. We found no common characteristics (such as severity of autism symptoms) that best describe autistic youth who experience problems with feeding or eating. Almost all studies we reviewed focused on problems with feeding (selective or picky eating), and only a few studies focused on eating disorder symptoms (concern with weight, shape, and/or body image). However, some researchers reported that eating disorder symptoms may occur more often in autistic individuals compared to their peers without autism. Many studies used the terms “feeding” and “eating” problems interchangeably, but understanding the difference between these problems is important for researchers to be consistent, as well as for proper identification and treatment. We suggest future researchers use “eating problems” when behaviors involve preoccupation with food, eating, or body image, and “feeding problems” when this preoccupation is absent. We highlight the importance of understanding whether feeding or eating problems are separate from autism traits, and the role of caregivers and other adults in the child’s treatment. Considerations for health-care providers to assist with diagnosis and treatment are also provided.
      Citation: Autism
      PubDate: 2021-03-03T04:22:55Z
      DOI: 10.1177/1362361321995631
       
  • A co-twin-control study of altered sensory processing in autism
    • Authors: Janina Neufeld, Mark J Taylor, Karl Lundin Remnélius, Johan Isaksson, Paul Lichtenstein, Sven Bölte
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder is associated with sensory processing alterations, such as sensory hyper- and hypo-responsiveness. Twin studies are scarce in this field, but they are necessary in order to disentangle the genetic and environmental contributions to this association. Furthermore, it is unclear how different neurodevelopmental/psychiatric conditions contribute to altering sensory processing. We investigated the association between autistic traits/autism spectrum disorder diagnosis and sensory processing alterations in twins (N = 269), using the adult/adolescent sensory profile, which differentiates four sub-domains: Low Registration, Sensation Seeking, Sensory Sensitivity, and Sensation Avoiding. While the associations between autistic traits and Low Registration and Sensation Avoiding persisted within monozygotic (genetically identical) twins, Sensory Sensitivity was only associated with autistic traits within dizygotic twins. In multivariate analyses with different neurodevelopmental/psychiatric diagnoses as predictor variables, autism spectrum disorder and attention deficit hyperactivity disorder were the strongest predictors for two adult/adolescent sensory profile sub-domains each. The results suggest that the association between autistic traits and Sensory Sensitivity is influenced by genetics while non-shared environmental factors influence the associations between autistic traits and Low Registration and Sensation Avoiding. They further indicate that altered sensory processing is not specific to autism spectrum disorder, while autism spectrum disorder is a strong predictor of certain sensory processing alterations, even when controlling for other (comorbid) neurodevelopmental/psychiatric conditions.Lay abstractIndividuals diagnosed with autism often describe that they process sensory information differently from others, and many experience sensory issues as problematic. For instance, an increased sensitivity to smells or sounds can make participating in social settings challenging. While sensory issues are now part of the diagnostic criteria for autism, they also co-occur with other psychiatric diagnoses such as attention deficit hyperactivity disorder and anxiety disorders. It is unclear to what extent the relationship between autism and alterations in sensory processing are due to genetics or environment. In addition, more research is needed on how autism, as compared to other diagnoses, is associated with sensory issues. Using a twin study, we found that genetic factors influenced self-reported reactivity to sensory stimuli in autism while environmental factors influenced other sensory issues (e.g. difficulties in detecting or differentiating sensory input). Hence, sensory hyper-reactivity might be an early onset core feature of autism, while other domains of alterations in sensory processing might develop later, influenced by the environment. Moreover, autism was more strongly associated with sensory issues related to increased sensitivity/reactivity as compared to other psychiatric diagnoses. However, attention deficit hyperactivity disorder was more strongly related to deficits in detecting/differentiating sensory stimuli and with an increased drive to seek sensory input. Our results indicate that sensory issues are not specific to autism, but that some aspects of altered sensory processing are more relevant for autism than for other diagnoses.
      Citation: Autism
      PubDate: 2021-03-01T12:49:51Z
      DOI: 10.1177/1362361321991255
       
  • Autistic adults’ subjective experiences of hoarding and
           self-injurious behaviors
    • Authors: Yael Goldfarb, Osnat Zafrani, Darren Hedley, Maya Yaari, Eynat Gal
      Abstract: Autism, Ahead of Print.
      Restrictive and Repetitive Behaviors and Interests represent a core feature of autism since the earliest conceptualization of the condition. Related behaviors, such as hoarding and self-injurious behaviors, are under-researched in adulthood, resulting in limited knowledge about their various manifestation through the life span. This study expands our understanding of hoarding and self-injurious behaviors through subjective experiences shared by autistic adults. Ten adults with an autism diagnosis (aged 18–55 years, five females) participated in semi-structured, in-depth interviews. Thematic analysis identified a cluster of behaviors related to hoarding and self-injurious behaviors. Further analysis sub-categorized each theme according to the underlying purpose of the behavior. Hoarding behaviors were motivated by (1) a need for emotional aids, (2) disposing difficulties, and (3) collecting items related to special interests. Reasons for engaging in self-injurious behaviors were (1) an urge for sensory stimulation and (2) emotional regulation purposes. Discussion focuses on the underlying motives of the participants for engaging in these behaviors, in respect to current research knowledge. Relations to the general construct of Restrictive and Repetitive Behaviors and Interests are discussed along with implications for research and practice.Lay abstractHoarding and self-injurious behaviors are relatively common in autism, but knowledge about their expressions in adulthood is scarce. Through interviews collecting subjective experiences of autistic adults, these behaviors were explored, and categorized to their underlying purposes. Findings portray the occurrence of these behaviors in the lives of autistic adults, their self-regulatory purposes, and their relationship to other behaviors in the domain of Restrictive and Repetitive Behaviors and Interests.
      Citation: Autism
      PubDate: 2021-02-26T05:03:52Z
      DOI: 10.1177/1362361321992640
       
  • Intermittent theta burst stimulation over the posterior superior temporal
           sulcus for children with autism spectrum disorder: A 4-week randomized
           blinded controlled trial followed by another 4-week open-label
           intervention
    • Authors: Hsing-Chang Ni, Yi-Lung Chen, Yi-Ping Chao, Chen-Te Wu, Yu-Yu Wu, Sophie Hsin-Yi Liang, Wei-Chih Chin, Tai-Li Chou, Susan Shur-Fen Gau, Ying-Zu Huang, Hsiang-Yuan Lin
      Abstract: Autism, Ahead of Print.
      The posterior superior temporal sulcus is a potential therapeutic target of brain stimulation for autism spectrum disorder. We conducted a 4-week randomized, single-blind parallel sham-controlled trial, followed by additional 4-week open-label intervention to evaluate the feasibility and efficacy regarding intermittent theta burst stimulation over the bilateral posterior superior temporal sulcus in autism spectrum disorder. In total, 78 intellectually able children and adolescents were randomized to the active (n = 40) and sham groups (n = 38). During the first 4 weeks, the active group received two-session/week intermittent theta burst stimulation, whereas the sham group received the same number of sham stimulation. After unblinding, both groups received eight-session real stimulation over the additional 4 weeks. In total, 91% participants completed the protocol with mild and transitory side-effects. There was no significant group-by-time interaction for active versus sham group on clinical symptoms and social cognitive performances in the first 4 weeks. The within-group analysis revealed 8 weeks (including a 4-week blind trial and a 4-week open-label intervention) of intermittent theta burst stimulation achieved greater efficacy than 4-week interventions. Participants with higher intelligence, better social cognitive performances, alongside less attention-deficit hyperactivity disorder severity at baseline, were more likely to be responders. Our study demonstrated the feasibility of long-term intermittent theta burst stimulation over the posterior superior temporal sulcus in children and adolescents with autism spectrum disorder. However, the findings from the first 4-week blind trial do not support the therapeutic efficacy of intermittent theta burst stimulation over the posterior superior temporal sulcus on the clinical symptoms and cognitive performance of social impairment, given the current stimulation protocol. The exploratory analyses suggest that the therapeutic efficacy might be moderated by several individual characteristics and more intermittent theta burst stimulation sessions.Lay abstractIntermittent theta burst stimulation is a varied form of repetitive transcranial magnetic non-invasive brain stimulation technique used to treat several neurological and psychiatric disorders. Its feasibility and therapeutic effects on the bilateral posterior superior temporal sulcus in children with autism are unknown. We conducted a single-blind, sham-controlled parallel randomized clinical trial in a hitherto largest sample of intellectually able children with autism (N = 78). Participants randomized to the active group received two-session/week intermittent theta burst stimulation for continuous 8 weeks. Those in the sham group received two-session/week sham stimulations in the first 4 weeks and then active intervention for the following 4 weeks after unblinding. First, we found that continuous 8-week intermittent theta burst stimulation on the bilateral posterior superior temporal sulcus in children with autism is safe and tolerable. Second, we found that 8-week intermittent theta burst stimulation produced greater therapeutic efficacy, although we did not find any significant effects of 4-week intermittent theta burst stimulation on core symptoms and social cognitive performances in autism. Further analysis revealed that participants with higher intelligence and better social cognitive performance, alongside less attention-deficit hyperactivity disorder severity at baseline, were more likely to be responders. This study identified that the factors contribute to responders and the results suggest that longer courses of non-invasive brain stimulation may be needed to produce therapeutic benefits in autism, with consideration of heterogeneous responses.
      Citation: Autism
      PubDate: 2021-02-26T05:01:24Z
      DOI: 10.1177/1362361321990534
       
  • Not just at school: Inclusion of children with autism spectrum disorder in
           a weight management program in a community pediatric setting
    • Authors: Juan C Espinoza, Alexis Deavenport-Saman, Olga Solomon, Sampreeti Chowdhuri, Choo Phei Wee, Collen Azen, Jazminne Orozco, Cary Kreutzer, Larry Yin
      Abstract: Autism, Ahead of Print.
      Children with autism spectrum disorder are at increased risk for obesity compared to typically developing children. Many obesity intervention programs exclude children with autism spectrum disorder. There is little research on developmentally inclusive approaches to pediatric weight management. We examined the outcomes of children and families with autism spectrum disorder in an inclusive, comprehensive behavioral family-based lifestyle intervention. A secondary analysis of a randomized controlled trial on families enrolled in a comprehensive behavioral family-based lifestyle intervention was conducted. Analyses included chi-square or Fisher’s exact tests to examine family and child differences in program completion rates and multivariate regression analysis using generalized estimating equation to further examine differences in weight outcomes between children with autism spectrum disorder versus no autism spectrum disorder accounting for other covariates. There were 158 families; 15 families had children with autism spectrum disorder. There were no significant differences in demographics, program completion, or weight outcomes between the two groups. Children who completed the intervention had a significant decrease in body mass index Z-scores, but no change in their percentage of the 95th percentiles. Families of children with autism spectrum disorder participated in a comprehensive behavioral family-based lifestyle intervention alongside children without autism spectrum disorder with similar outcomes. Comprehensive behavioral family-based lifestyle intervention can meet the weight management needs of children with autism spectrum disorder using an inclusive approach, expanding access to needed obesity interventions.Lay abstractChildren diagnosed with autism are likely to be more overweight than children who do not have autism. There are many group programs that help children to be more physically active and improve their eating habits to achieve healthy weight, but most of these programs do not allow children with autism to participate. We studied a program that was specially adapted so children with autism could participate together with peers who do not have autism. The program lasted 8 weeks and was offered in the evening at a large healthcare center in a big city. The children participated with a parent or another adult who takes care of them. We analyzed data that were part of a previous project where we studied how physical activity trackers called Fitbit help overweight children to change their eating and exercise habits so they can achieve healthier weight. Out of 158 families in the study, 15 families had a child or children with autism. We measured changes in the weight of children with and without autism and compared how many of the children completed the program. Children who had autism had similar results in achieving healthy weight and finishing the program compared to their peers without autism. Our study found that when a group weight management program is slightly changed to meet the needs of children with autism, they can successfully participate and benefit similarly to their peers who do not have autism.RegistrationThis trial was registered with ClinicalTrials.gov (NCT03215641).
      Citation: Autism
      PubDate: 2021-02-25T04:43:39Z
      DOI: 10.1177/1362361321993710
       
  • Naturalistic evaluation of preschoolers’ spontaneous interactions: The
           Autism Peer Interaction Observation Scale
    • Authors: Nirit Bauminger-Zviely, Analia Shefer
      Abstract: Autism, Ahead of Print.
      Peer interaction can be challenging in autism spectrum disorder, but naturalistic peer-observation scales for preschoolers are scarce. This study examined psychometric qualities of the newly developed Autism Peer Interaction Observation Scale. We tested the Autism Peer Interaction Observation Scale to (a) characterize peer interactions of preschoolers with autism spectrum disorder who were cognitively able versus typical age-mates, (b) explore each group’s hierarchical pattern of peer interaction behaviors, and (c) identify Autism Peer Interaction Observation Scale’s links with standard reports for assessing social-communication functioning (Vineland Behavior Scales, 2nd ed.), social impairment (Social Responsiveness Scale, 2nd ed.), autism severity (Autism Diagnostic Observation Schedule, 2nd ed.), and intelligence quotient (Mullen) in the cognitively able preschoolers with autism spectrum disorder group. Participants comprised 85 preschoolers (50 cognitively able preschoolers with autism spectrum disorder, intelligence quotient > 75; 35 typical). Groups were matched for age, intelligence quotient, and maternal education. Significant group differences emerged on all Autism Peer Interaction Observation Scale categories, in favor of typical. In cognitively able preschoolers with autism spectrum disorder, correlation analyses indicated that more typical peer relations on Autism Peer Interaction Observation Scale were linked with better adaptive and socialization skills (Vineland Behavior Scales, 2nd ed.) and fewer social atypicalities (Social Responsiveness Scale, 2nd ed.). Higher intelligence quotient scores were linked with better Autism Peer Interaction Observation Scale social-communication functioning. Only a few Autism Peer Interaction Observation Scale social-communication categories significantly correlated with the Autism Diagnostic Observation Schedule, 2nd ed. Findings highlight the Autism Peer Interaction Observation Scale as differentiating between groups and providing knowledge about peer interaction in natural settings. This new tool can help personalize social-communication programs and evaluations of early intervention outcomes.Lay abstractPeer interaction can be challenging in autism spectrum disorder, but naturalistic peer-observation scales for preschoolers are limited. This study examined the newly developed Autism Peer Interaction Observation Scale, with 17 subcategories, which evaluate naturalistic peer interaction processes in preschoolers with autism spectrum disorder and typical development. We tested the Autism Peer Interaction Observation Scale to (a) characterize peer interactions of preschoolers with autism spectrum disorder who were cognitively able versus typical age-mates, (b) explore each group’s hierarchical pattern of peer interaction behaviors, and (c) identify Autism Peer Interaction Observation Scale’s links with standard reports for assessing social-communication functioning (Vineland Behavior Scales, 2nd ed.), social impairment (Social Responsiveness Scale, 2nd ed.), autism severity (Autism Diagnostic Observation Schedule, 2nd ed.), and intelligence quotient (Mullen) in the cognitively able preschoolers with autism spectrum disorder group. Participants comprised 85 preschoolers (50 cognitively able preschoolers with autism spectrum disorder, intelligence quotient > 75; 35 typical). Groups were matched according to age, intelligence quotient, and maternal education. Significant group differences emerged on all Autism Peer Interaction Observation Scale categories, with the typical group showing better social-communication functioning as compared to the cognitively able preschoolers with autism spectrum disorder group. Also, in cognitively able preschoolers with autism spectrum disorder that observed as demonstrating more typical peer relations on the Autism Peer Interaction Observation Scale showed better adaptive and socialization skills on the Vineland (Vineland Behavior Scales, 2nd ed.) and fewer social atypicalities on the Social Responsiveness Scale, 2nd ed. Higher intelligence quotient scores were linked with better observed social-communication functioning (on Autism Peer Interaction Observation Scale). Few Autism Peer Interaction Observation Scale social-communicative categories significantly correlated with the Autism Diagnostic Observation Schedule, 2nd ed. Findings highlight the Autism Peer Interaction Observation Scale as differentiating the two preschooler groups and providing additional knowledge about socially communicative peer interaction in natural settings. This new tool can help personalize social-communication programs and evaluations of early intervention outcomes, thereby leading to a fuller picture of these young children’s functioning.
      Citation: Autism
      PubDate: 2021-02-25T04:41:40Z
      DOI: 10.1177/1362361321989919
       
  • Do animated triangles reveal a marked difficulty among autistic people
           with reading minds'
    • Authors: Alexander C Wilson
      Abstract: Autism, Ahead of Print.
      This meta-analysis tested whether autistic people show a marked, isolated difficulty with mentalising when assessed using the Frith -Happé Animations, an advanced test of mentalising (or ‘theory of mind’). Effect sizes were aggregated in multivariate meta-analysis from 33 papers reporting data for over 3000 autistic and non-autistic people. Relative to non-autistic individuals, autistic people underperformed, with a small effect size on the non-mentalising control conditions and a medium effect size on the mentalising condition. This indicates that studies have reliably found mentalising to be an area of challenge for autistic people, although the group differences were not large. It remains to be seen how important mentalising difficulties are in accounting for the social difficulties diagnostic of autism. As autistic people underperformed on the control conditions as well as the mentalising condition, it is likely that group differences on the test are partly due to domain-general information processing differences. Finally, there was evidence of publication bias, suggesting that true effects on the Frith -Happé Animations may be somewhat smaller than reported in the literature.Lay abstractAutistic people are thought to have difficulty with mentalising (our drive to track and understand the minds of other people). Mentalising is often measured by the Frith -Happé Animations task, where individuals need to interpret the interactions of abstract shapes. This review article collated results from over 3000 people to assess how autistic people performed on the task. Analysis showed that autistic people tended to underperform compared to non-autistic people on the task, although the scale of the difference was moderate rather than large. Also, autistic people showed some difficulty with the non-mentalising as well as mentalising aspects of the task. These results raise questions about the scale and specificity of mentalising difficulties in autism. It also remains unclear how well mentalising difficulties account for the social challenges diagnostic of autism.
      Citation: Autism
      PubDate: 2021-02-23T09:04:24Z
      DOI: 10.1177/1362361321989152
       
  • Camouflaging in an everyday social context: An interpersonal recall study
    • Authors: Julia Cook, Laura Crane, Laura Bourne, Laura Hull, William Mandy
      Abstract: Autism, Ahead of Print.
      Camouflaging is a social phenomenon operating within everyday social interactions of autistic and non-autistic people. The current study explored autistic adults’ camouflaging in an everyday social context via interpersonal process recall methodology (Kegan, 1969). A total of 17 autistic adults (8 females, 6 males and 3 agender/gender-neutral individuals) participated in a 10-min controlled social task designed to replicate a common day-to-day social situation. Participants then watched a video of their interaction with a researcher, actively identifying instances of camouflaging and discussing their experiences of camouflaging. Using thematic analysis, four themes were generated: (1) a strong desire for, yet uncertainty in, securing social acceptance and connection; (2) camouflaging, developed over time, as a means to achieve social acceptance and connection; (3) experiencing intrapersonal and interpersonal camouflaging consequences during social interactions; and (4) authentic socialising as an alternative to camouflaging. These findings are discussed with reference to the existing literature on stigma management outside the field of autism.Lay abstractMany autistic people report that, despite personal costs, they use strategies to hide their autistic characteristics or appear non-autistic at work, school or university, when speaking with health professionals, or while socialising with certain friends and family members. These strategies are often referred to as camouflaging. This study explores camouflaging during everyday social interactions. A total of 17 autistic adults were filmed taking part in a common everyday social situation – a conversation with a stranger. They then watched the video of this conversation with a researcher and answered questions about camouflaging. These autistic people told us that they (1) had a strong desire to socialise with and be valued by other people but, because of negative past experiences, they often felt unsure about their ability to do so; (2) used camouflaging to help them to socialise and be valued by others; (3) experienced negative consequences when camouflaging (e.g. fatigue, anxiety and difficulties in friendships); and (4) sometimes socialised in more autistic ways instead of camouflaging. This study shows us how autistic people often change their behaviour because of the way they are treated by nonautistic people and that autistic people may benefit from programmes that help them to socialise in more authentically autistic ways, but only if their autistic social behaviour is met with understanding and acceptance from non-autistic people.
      Citation: Autism
      PubDate: 2021-02-20T05:15:11Z
      DOI: 10.1177/1362361321992641
       
  • Adults with autism spectrum disorder show atypical patterns of thoughts
           and feelings during rest
    • Authors: Sonja Simpraga, Ricarda F Weiland, Huibert D Mansvelder, Tinca JC Polderman, Sander Begeer, Dirk JA Smit, Klaus Linkenkaer-Hansen
      Abstract: Autism, Ahead of Print.
      Mind wandering constitutes a major part of everyday experience and is inherently related to how we feel and identify ourselves. Thus, probing the character and content of thoughts and feelings experienced during mind-wandering episodes could lead to a better understanding of the human mind in health and disease. How mind wandering and spontaneous thought processes are affected in disorders such as autism is poorly understood. Here, we used the eyes-closed rest condition to stimulate mind wandering and quantified the subjective experiences using the Amsterdam Resting-State Questionnaire—which quantifies subjective psychological states of resting-state cognition across 10 domains—in 88 adults with autism spectrum disorder and 90 controls. We observed an atypical pattern of both thoughts and feelings in the autism spectrum disorder cohort, specifically in the domains of Theory of Mind, Comfort, and Discontinuity of Mind. We propose that the use of the Amsterdam Resting-State Questionnaire as a standardized cognitive instrument could advance our understanding of thoughts and feelings in autism spectrum disorder as well as in a wide variety of other brain disorders and how these may change due to therapeutic interventions.Lay abstractEveryone knows the feeling of letting one’s mind wander freely in a quiet moment. The thoughts and feelings experienced in those moments have been shown to influence our well-being—and vice versa. In this study, we looked at which thoughts and feelings are being experienced by adults with autism spectrum disorder and compared them to adults without autism spectrum disorder. In total, 88 adults with autism spectrum disorder and 90 adults without autism spectrum disorder were asked to rest for 5 min with their eyes closed and let their mind wander. Directly after, they filled in the Amsterdam Resting-State Questionnaire, which probes what participants were feeling and thinking during the period of rest. We found that adults with autism spectrum disorder tend to think less about others, felt less comfortable, and had more disrupted thoughts during the rest compared to adults without autism spectrum disorder. Interestingly, autism spectrum disorder participants reporting lower levels of comfort during the rest also reported more autism spectrum disorder symptoms, specifically in social behaviors and skills, attention switching, and imagination. We propose to use the eyes-closed rest condition in combination with the Amsterdam Resting-State Questionnaire more widely to shed light on aberrant thoughts and feelings in brain disorders and to study the effect of therapeutic interventions.
      Citation: Autism
      PubDate: 2021-02-20T05:14:42Z
      DOI: 10.1177/1362361321990928
       
  • ‘It’s not that they don’t want to access the support . . . it’s
           the impact of the autism’: The experience of eating disorder services
           from the perspective of autistic women, parents and healthcare
           professionals
    • Authors: Charli Babb, Janina Brede, Catherine R G Jones, Mair Elliott, Cathy Zanker, Kate Tchanturia, Lucy Serpell, Will Mandy, John R E Fox
      Abstract: Autism, Ahead of Print.
      This study explores autistic women’s experiences of eating disorder services. Estimates suggest that 20%–30% of women in treatment for anorexia nervosa display diagnostic features characteristic of autism. Research suggests that autistic individuals’ needs are not being met by standard anorexia nervosa treatments. In the current study, in-depth interviews were conducted with 15 autistic women with experience of anorexia nervosa, 12 parents of autistic women with anorexia nervosa, and 11 eating disorder healthcare professionals. Using thematic analysis, three overarching themes were identified: misunderstanding autism and autistic traits, one treatment does not fit all, and improving accessibility and engagement within services. We found that there were diverse barriers facing autistic women when in treatment for anorexia nervosa, and these were accentuated by a lack of autism understanding within eating disorder services. Future research should focus on developing interventions that are tailored to the specific needs of autistic individuals with anorexia nervosa.Lay This study explores autistic women’s experiences of eating disorder services. About 20%–30% of people with anorexia nervosa are also autistic, and current treatments seem not to work as well for them. We interviewed 15 autistic women with experience of anorexia nervosa, 12 parents of autistic women with anorexia nervosa, and 11 healthcare professionals working in eating disorder services. We asked autistic women and parents about their experiences of eating disorder services, and we asked healthcare professionals about their experiences treating autistic women with anorexia nervosa. Participants’ views were represented by three overall themes: misunderstanding autism and autistic traits, one treatment does not fit all, and improving accessibility and engagement within services. We found that autistic women face many barriers when in treatment for anorexia nervosa, often because of a lack of autism understanding within eating disorder services. Future research should look at developing anorexia nervosa treatments that can specifically help autistic individuals.
      Citation: Autism
      PubDate: 2021-02-16T05:02:28Z
      DOI: 10.1177/1362361321991257
       
  • Exploring an e-learning community’s response to the language and
           terminology use in autism from two massive open online courses on autism
           education and technology use
    • Authors: Jiedi Lei, Lauren Jones, Mark Brosnan
      Abstract: Autism, Ahead of Print.
      Prior research has identified the divergence across different stakeholder groups in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners’ responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Comments from members of the autistic and autism community and professionals were analysed together using thematic analysis, to identify shared opinions on what, why and how language should be used when describing autism across stakeholder groups. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism and that the diagnostic label is a way to facilitate understanding across stakeholder groups and help the individual gain access to support. Semantic language choices may matter less as long as the person’s difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that consideration for semantic choice of language use should focus on communicating an individual’s strengths and differences.Lay abstractWithin the neurodiversity movement, one recent divergence is in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners’ responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism, and although identity-first language acknowledges autism as part of an individual’s identity, it can also conjure up negative stereotypes and be stigmatising. Although family, friends and professionals highlighted that the diagnostic label is a way to facilitate understanding across stakeholder groups and help autistic individuals gain access to support, autistic self-advocates found the process of disclosing autism as a form of disability to conflict with their sense of identity, and broader terms such as ‘autism spectrum’ failed to capture individual strengths and weaknesses. Semantic language choices may matter less as long as the person’s difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that language used when describing autism should follow the autistic individual’s lead, with the primary focus on communicating an individual’s strengths and difficulties, to foster a sense of positive autism identity and inclusivity, and enable access to appropriate support.
      Citation: Autism
      PubDate: 2021-02-11T09:43:11Z
      DOI: 10.1177/1362361320987963
       
  • Examining frequent emergency department use among children and adolescents
           with autism spectrum disorder
    • Authors: Judith Beverly, Theodoros Giannouchos, Timothy Callaghan
      Abstract: Autism, Ahead of Print.
      We analyze the 2011–2016 Healthcare Cost and Utilization Project State Emergency Department Databases and State Inpatient Databases for all emergency department visits by children and adolescents in New York to estimate the association between autism spectrum disorder and frequent emergency department utilization. Our study included 5.9 million individuals with 9.1 million emergency department visits. Of those, 31,682 had autism spectrum disorder (0.5%) accounting for 66,053 (0.7%) emergency department visits. Individuals with autism spectrum disorder had on average 0.6 more emergency department visits per year, were more likely to exhibit frequent emergency department use (⩾4, ⩾6, ⩾8, and ⩾10 emergency department visits/year), and had larger shares of comorbidities and diagnoses related to attention-deficit/hyperactivity disorder, intellectual disability, and epilepsy. These findings highlight the need for patient and family-centered care interventions and emergency department staff education initiatives.Lay abstractThis study used data for 5.9 million individuals with 9.1 million emergency department visits from all hospitals in the state of New York to explore frequent emergency department use between children and adolescents with autism spectrum disorders and those without autism spectrum disorders. We found that children and adolescents with autism spectrum disorders had larger shares of comorbidities and diagnoses related to attention-deficit/hyperactivity disorder, intellectual disability, and epilepsy. Children and adolescents with autism spectrum disorders were also more likely to utilize emergency departments and to exhibit frequent use. These results emphasize the need for using family-centered care to improve the care experiences of children and youth with autism spectrum disorders and their families. In addition, the education of emergency department staff of processes and practices as it relates to delivery of care and the care experience.
      Citation: Autism
      PubDate: 2021-02-11T06:00:58Z
      DOI: 10.1177/1362361321990925
       
  • Virtual interview training for autistic transition age youth: A randomized
           controlled feasibility and effectiveness trial
    • Authors: Matthew J Smith, Kari Sherwood, Brittany Ross, Justin D Smith, Leann DaWalt, Lauren Bishop, Laura Humm, Jeff Elkins, Chris Steacy
      Abstract: Autism, Ahead of Print.
      Autistic transition age youth struggle with obtaining employment, and interviewing is a critical barrier to getting a job. We adapted an efficacious virtual reality job interview intervention to meet the needs of autistic transition age youth, called the Virtual Interview Training for Transition Age Youth. This study evaluated whether Virtual Interview Training for Transition Age Youth can be feasibly delivered in high school special education settings and whether Virtual Interview Training for Transition Age Youth improves job interview skills, job interview self-efficacy, job interview anxiety, and access to employment. Forty-eight autistic transition age youth received school-based pre-employment services as usual with Virtual Interview Training for Transition Age Youth, while 23 autistic transition age youth received services as usual only. Local teachers trained and supervised autistic transition age youth using Virtual Interview Training for Transition Age Youth. Participants reported Virtual Interview Training for Transition Age Youth was highly acceptable. Participants receiving services as usual and Virtual Interview Training for Transition Age Youth, compared to participants receiving services as usual only, had better job interview skills and lower job interview anxiety as well as greater access to jobs. Overall, Virtual Interview Training for Transition Age Youth appears to be effective at teaching job interview skills that are associated with accessing competitive jobs. Moreover, youth enjoyed Virtual Interview Training for Transition Age Youth and teachers feasibly implemented the tool within special education pre-employment transition services. Future research needs to better understand how autistic transition age youth from culturally diverse backgrounds and different social, behavioral, or mental health challenges may respond to Virtual Interview Training for Transition Age Youth.Lay abstractAutistic transition age youth struggle with obtaining employment, and interviewing is a critical barrier to getting a job. We adapted an efficacious virtual reality job interview intervention to meet the needs of autistic transition age youth, called the Virtual Interview Training for Transition Age Youth. This study evaluated whether Virtual Interview Training for Transition Age Youth can be feasibly delivered in high school special education settings and whether Virtual Interview Training for Transition Age Youth improves job interview skills, job interview self-efficacy, job interview anxiety, and access to employment. Forty-eight autistic transition age youth received school-based pre-employment services as usual with Virtual Interview Training for Transition Age Youth, while 23 autistic transition age youth received services as usual only. Local teachers trained and supervised autistic transition age youth using Virtual Interview Training for Transition Age Youth. Participants reported Virtual Interview Training for Transition Age Youth was highly acceptable. Participants receiving services as usual and Virtual Interview Training for Transition Age Youth, compared to participants receiving services as usual only, had better job interview skills and lower job interview anxiety as well as greater access to jobs. Overall, Virtual Interview Training for Transition Age Youth appears to be effective at teaching job interview skills that are associated with accessing competitive jobs. Moreover, youth enjoyed Virtual Interview Training for Transition Age Youth and teachers feasibly implemented the tool within special education pre-employment transition services. Future research needs to better understand how autistic transition age youth from culturally diverse backgrounds and different social, behavioral, or mental health challenges may respond to Virtual Interview Training for Transition Age Youth.
      Citation: Autism
      PubDate: 2021-02-11T05:58:38Z
      DOI: 10.1177/1362361321989928
       
  • A mixed methods exploration of community providers’ perceived barriers
           and facilitators to the use of parent training with Medicaid-enrolled
           clients with autism
    • Authors: Diondra Straiton, Barb Groom, Brooke Ingersoll
      Abstract: Autism, Ahead of Print.
      This mixed methods analysis examined provider perspectives on barriers and facilitators to parent training use with Medicaid-enrolled clients. Provider survey data were analyzed using hierarchical linear regression models and thematic analysis was used to analyze follow-up interviews with providers. Qualitative themes were developed inductively from interview transcripts without preconceived hypotheses. Barriers and facilitators were identified at the family-, provider-, and organization-level. Family-level barriers were the only barriers to uniquely predict parent training extensiveness (β = −0.27, p = 0.007), which is a composite measure of parent training frequency and quality. No facilitators uniquely predicted extensiveness, but provider skills and professional training experiences marginally predicted extensiveness (ps 
      Citation: Autism
      PubDate: 2021-02-09T05:08:23Z
      DOI: 10.1177/1362361321989911
       
  • “We believe in good jobs, fair jobs, dignifying jobs that give you a
           good sense of identity”: Career and job guidance counseling in autism
    • Authors: Sven Bölte
      Abstract: Autism, Ahead of Print.

      Citation: Autism
      PubDate: 2021-02-08T06:53:19Z
      DOI: 10.1177/1362361321990325
       
  • Understanding the role of self-determination in shaping university
           experiences for autistic and typically developing students in the United
           Kingdom
    • Authors: Jiedi Lei, Ailsa Russell
      Abstract: Autism, Ahead of Print.
      With more autistic students enrolling in higher education, little is known about how autistic students can actively and effectively shape their own university experience through self-determination. This study explores how both autistic (n = 18) and typically developing students and recent graduates (n = 18) perceive their self-determination during their transition into, through and out of university in the United Kingdom. Students reported many shared and unique aspects of autonomy, competence and relatedness underlying self-determination. Many autistic students also discussed autism-related strengths facilitating academic pursuit at university, though found coping with transitional changes more difficult than typically developing students. Using strength-based approaches to help autistic students to actively adapt to routine changes might facilitate their self-determination during transition to university.Lay abstractPrior research suggests that autistic students in higher education might struggle with developing autonomy, competence and establish relatedness due to their executive functioning and social communication difficulties. We interviewed 18 autistic and 18 typically developing students to explore how students perceived themselves to be in control of their university experience. Both groups provided anecdotal examples that supported similar perceptions of self-determination in shaping the academic, daily living and socialisation aspects of university life. Autistic students reflected on their cognitive strengths such as attention to detail, persistence and ability to tailor their academic studies towards their interest. Varying degrees of sociability were noted, with some autistic students preferring to focus their self-determination efforts on academic success, while others treasured the novel social experiences including peer support and friendship at university. Compared to greater flexibility endorsed by typically developing students, autistic students perceived establishing a routine at university to be a necessity and were self-determined in maintaining stability amid a sea of change. Recognising strengths and self-determination efforts in autistic students can help stakeholders support their personal development towards independent living and self-sufficiency in adulthood and to successfully transition into, through and out of university.
      Citation: Autism
      PubDate: 2021-02-04T04:50:58Z
      DOI: 10.1177/1362361320984897
       
  • Exploring the health of families with a child with autism
    • Authors: Sarah L Smith, Hannah B McQuade
      Abstract: Autism, Ahead of Print.
      Families provide a critical context for the overall growth and development of a child. The health of a family is foundational to the everyday life in which a child and family can flourish. For families raising a child with autism, the chronic, intense nature of everyday life threatens family health in part due to increased parental stress and potential centralization of the child with autism in family functioning. The present study sought to understand how families of children with autism perceived and experienced their own family health and to identify what factors and processes families identified as contributing to their health. Researchers conducted semi-structured interviews with 16 families with a child with autism ages 2-17. Interviews occurred in person and with all members present to the extent possible. Sixteen mothers, eight fathers, and 32 children (18 with autism) participated. Interviews were audiorecorded and transcribed verbatim. Researchers analyzed data using inductive content analyses to generate results. Findings suggest families experience family health as a journey grounded within family identity and marked by five themes: connection, balance, the centralization of autism, stress, and support systems. Findings contribute relevant considerations for service providers working to support children with autism and their families.Lay abstractFamilies are important for the overall growth and development of a child. The health of a family is foundational to the everyday life in which a child and family can blossom. Families with a child with autism have a family life that has challenges for many reasons including that parents can be stressed from trying to figure out how to be a good parent for their child with autism. We wanted to know two things: (1) what is family health for families of a child with autism and (2) what affects families trying to be their healthiest. We wanted to know the answers to these questions from families themselves, including parents (not just moms) and children, because they are the best experts. We talked to 16 families including 16 mothers, 8 fathers, and 32 children (18 with autism). Families shared that being a healthy family was a journey with ups and downs and that families were not always perfect. It helped when families knew about themselves as a family such as knowing what they liked and did not like to do, and knowing what the different people in the family needed. Families said that what affected their family’s health was being together, keeping their days not too busy, stress, autism itself, having helpers like friends, grandparents, therapists, and having money to pay for services. We hope that knowing these answers will guide service providers of people with autism to think about healthy families.
      Citation: Autism
      PubDate: 2021-01-28T09:51:40Z
      DOI: 10.1177/1362361320986354
       
  • Mental health, broad autism phenotype and psychological inflexibility in
           mothers of young children with autism spectrum disorder in Australia: A
           cross-sectional survey
    • Authors: Kavindri Kulasinghe, Koa Whittingham, Amy E Mitchell
      Abstract: Autism, Ahead of Print.
      Mothers of children with autism spectrum disorder are more likely to have features of the broad autism phenotype and adverse mental health outcomes. The broad autism phenotype can contribute to poorer mental health; however, the mechanism behind this relationship remains uncertain. This study investigated both the predictors of mental health and the relationship between the broad autism phenotype and mental health symptoms in mothers of children with autism spectrum disorder. This cross-sectional survey recruited 232 Australian mothers (⩾18 years) of children with autism spectrum disorder (0–10 years) and assessed maternal broad autism phenotype, mental health, adult attachment style, degree of social support and parenting experience. Hierarchical multiple regressions, t-tests, correlations and mediation analyses were conducted. Psychological inflexibility was the greatest unique predictor of anxious, depressive and stress symptomatology. Challenging parenting experiences predicted depressive, anxious and stress symptomatology while the broad autism phenotype also uniquely predicted anxious symptoms. Both psychological inflexibility and challenging parenting experiences were significant mediators of the relationships between the broad autism phenotype and depressive symptoms and between the broad autism phenotype and anxiety. Psychological inflexibility alone mediated the relationship between the broad autism phenotype and stress. Targeting psychological inflexibility and supporting parenting are promising avenues for future interventions to support the mental health of mothers of young children with autism spectrum disorder.Lay abstractMothers of children with autism tend to have poorer mental health outcomes compared to most mothers. Lack of social support, parenting challenges and relationship difficulties are more common for mothers of children with autism and can all affect maternal mental health. Mothers of children with autism are also more likely to have some autistic features, called the broad autism phenotype, that can contribute to poorer mental health; however, how these factors relate to one another are unclear. This study found that mothers who were less flexible in their thinking and behaviour and had more difficult parenting experiences tended to have poorer mental health. Mothers with more autistic features were less flexible in their thinking and behaviour, which, in turn, was linked to greater symptoms of depression, anxiety and stress. Mothers with greater autistic features also reported more difficult parenting experiences, which was in turn linked with greater symptoms of anxiety and depression. This study suggests that supporting mothers of young children with autism to manage parenting challenges and become more flexible with their thinking and behaviour could help to improve their mental health.
      Citation: Autism
      PubDate: 2021-01-28T09:50:44Z
      DOI: 10.1177/1362361320984625
       
  • How do children and youth with autism spectrum disorder self-report on
           behavior' A study of the validity indexes on the Behavior Assessment
           System for Children, Second Edition, self-report of personality
    • Authors: Reyhane Bakhtiari, Sarah M Hutchison, Grace Iarocci
      Abstract: Autism, Ahead of Print.
      Self-report measures offer a unique source of information in the assessment and intervention of individuals with autism spectrum disorder. However, it is not known if children with autism spectrum disorder can answer self-report questionnaires accurately and consistently. As a step to address this issue, we examined validity indexes of the Behavior Assessment System for Children, Second Edition, self-report of personality in 139 children and adolescents with and without autism spectrum disorder aged 8–17 years. There were no significant differences between groups on parents’ education, first language spoken at home, intelligence quotient, and age. We examined the influence of diagnosis of autism spectrum disorder, age group, intelligence quotient, and attention problems on the self-report of personality validity indexes (indicators of overly negative or positive, random, inattentive or inconsistent responses). The findings suggest that participants with autism spectrum disorder were more likely to show at least one validity caution on their self-report of personality as compared to their matched typically developing peers. However, this difference might be a result of comorbid attention problems, rather than having a diagnosis of autism spectrum disorder. The diagnosis of autism spectrum disorder was not a significant predictor of the validity indexes. Participants, with and without autism spectrum disorder, with fewer attention problem ratings, higher intelligence quotient scores, and adolescents compared to children showed better validity outcomes.Lay abstractUsing self-report questionnaires is an important method in the assessment and treatment of children with autism. Self-reports can provide unique information about children’s feelings and thoughts that is not available through other methods such as parent-reports. However, many clinicians are not sure whether children with autism can provide accurate self-reports. To study this, we examined 139 children and youth with and without autism aged 8–17 years. We looked at the effect of having autism, as well as other factors such as age, intelligence quotient, and attention problems on the validity of self-reports in these children. We examined if the children gave overly negative or positive answers and if they responded to the questions randomly or without paying attention. We found that children with autism can provide acceptable self-reports. However, they have more validity problems compared to their peers without autism. Our findings showed that this difference might be related to having attention problems in addition to autism, rather than having autism by itself. Children, with and without autism spectrum disorder, with fewer attention problems and higher intelligence quotient scores and those in the older age group, showed better validity. This article suggests that clinicians can use self-report measures for children with autism, but they should pay attention to important factors such as children’s intelligence quotient and attention problems.
      Citation: Autism
      PubDate: 2021-01-28T09:50:21Z
      DOI: 10.1177/1362361320984601
       
  • Are there anthropometric and body composition differences between children
           with autism spectrum disorder and children with typical development'
           Analysis by age and spectrum severity in a school population
    • Authors: Patricia Esteban-Figuerola, Paula Morales-Hidalgo, Victoria Arija-Val, Josefa Canals-Sans
      Abstract: Autism, Ahead of Print.
      Overweight and obesity have been reported to be more prevalent in populations with autism spectrum disorder than in children with typical development. The aim of this study was to compare the anthropometric status of children with autism spectrum disorder (diagnosed and subclinical) and children with typical development and analyse which variables can affect the anthropometric and health status of children with autism spectrum disorder. We present a two-phase epidemiological study in a school population of two age groups which assesses autism spectrum disorder diagnosis, anthropometric data and bioelectrical impedance analysis. From an initial sample of 3,713 children, 79 with autism spectrum disorder, 42 with subclinical autism spectrum disorder and 350 with typical development participated in the study. Pre-schoolers with autism spectrum disorder were taller than pre-schoolers with typical development. School-age children with autism spectrum disorder showed a significantly higher body mass index and rate of overweight/obesity than children with typical development (63.4% vs 46.3%). No significant differences were found for bioelectrical impedance analysis, but school-age children with autism spectrum disorder showed a significantly higher waist circumference, waist/height ratio and cardiovascular risk than children with typical development. The quality of the diet was lower in children with autism spectrum disorder than in children with typical development. Multiple regression analyses showed that having autism spectrum disorder and internalizing psychological problems were associated with waist/height ratio and high cardiovascular risk in school-age children.Lay abstractThis study makes a comparison between the growth status of pre-school and school-age children with autism spectrum disorder and typical development children. Pre-schoolers with autism spectrum disorder were taller than children with typical development. School-age children with autism spectrum disorder were more overweight/obese, had more body fat and a greater waist circumference and waist/height ratio than children with typical development. The presence of autism spectrum disorder and internalizing problems was associated with cardiovascular risk in school-age children.
      Citation: Autism
      PubDate: 2021-01-25T09:14:06Z
      DOI: 10.1177/1362361320987724
       
  • Autonomic dysfunction in autism: The roles of anxiety, depression, and
           stress
    • Authors: Emily C Taylor, Lucy A Livingston, Mitchell J Callan, Chris Ashwin, Punit Shah
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder (ASD) is associated with atypical autonomic nervous system (ANS) function. However, little is known about this relationship, while accounting for co-occurring mental health conditions (e.g. anxiety) that are also associated with ANS dysfunction. In addition, research on the ANS has typically involved physiological measurements, without using more clinically meaningful measures of ANS dysfunction, such as the self-reported frequency of ANS-related physical health symptoms. Furthermore, very little is known about ANS function in autistic adults, given that previous research has focused on ANS dysfunction in children with ASD. Addressing these gaps in the literature, we compared ANS function in adults with(out) ASD (Study 1). Although autistic adults reported greater ANS dysfunction than matched neurotypical controls, this difference was not significant after controlling for anxiety and depression. Similarly, in a large nonclinical sample (Study 2), we found that anxiety and stress mediated the relationship between autistic traits and ANS dysfunction. Together, we conclude that ANS dysfunction is not a feature of ASD per se, but instead attributable to the high levels of anxiety and stress in autistic adults. We discuss the clinical relevance of these findings for managing ANS dysfunction and other physical and mental health concerns in autistic adulthood.Lay abstractThe autonomic nervous system (ANS) is responsible for the functioning of the heart, bladder, pupils and several other bodily functions. Therefore, when the ANS functions abnormally, individuals can experience a number of physical symptoms, including dizziness, abnormal sweating and digestive difficulties. Currently, it is unclear if autistic adults experience ANS dysfunction. Therefore, in this study, we investigated whether autistic adults report more ANS-related physical symptoms, indicating greater ANS dysfunction, and whether this may be related to autism, or rather anxiety, depression, or stress. The findings suggest that ANS dysfunction, where found in autism, is due to co-occurring stress and anxiety. We therefore propose that treating stress and anxiety may be an effective way to ameliorate ANS-related health problems in autistic adults.
      Citation: Autism
      PubDate: 2021-01-25T06:25:57Z
      DOI: 10.1177/1362361320985658
       
  • Self-reported community participation experiences and preferences of
           autistic adults
    • Authors: Lindsay L Shea, Katherine Verstreate, Stacy Nonnemacher, Wei Wong, Mark S Salzer
      Abstract: Autism, Ahead of Print.
      Community participation is essential to overall health and well-being. However, research on the community participation experiences and preferences of autistic adults is lacking. Results from a large, mid-Atlantic statewide needs assessment survey found that a number of activities that include social interactions or are focused on meeting daily needs are important to autistic adults and that they participate in these activities to varying degrees. Going shopping at a grocery store was the most common community activity reported and also rated as important by the largest proportion of respondents. Autistic adults with a co-occurring intellectual disability participated in fewer activities and reported fewer activities as important. Sufficiency, the extent to which each individual was satisfied with their level of participation in important activities, was greater for autistic adults with higher incomes and lower for autistic adults who lived independently or had co-occurring psychiatric diagnoses. Breadth, or the number of important activities participated in during the past month, was lowest for autistic adults living in facilities and those with co-occurring psychiatric diagnoses, and higher for adults with self-reported service needs. As new community participation requirements for Medicaid roll out across the United States, autistic adults can provide critical feedback to inform policy and practice.Lay abstractAlthough participation in communities is a key component of health and well-being, little research has explored community participation among autistic adults. A better understanding of preferences and access to various community activities among autistic adults provides intervention and policy directions in a critical area. This study reports responses from one of the largest groups of autistic adults surveyed to date. Participants reported their valued activities, number of days they participated in each activity during the previous month, and the extent to which they perceived their participation to be sufficient. Grocery shopping was the most common community activity, and most important. A wide range of activities were participated in during the previous month and more than half of the autistic adults reported that most activities were important. Autistic adults with a co-occurring intellectual disability participated in fewer activities and said that fewer activities were important. Sufficiency, or the degree to which an individual felt they participated enough in important activities, was greater for autistic adults with higher incomes and lower for autistic adults who lived independently or had co-occurring psychiatric diagnoses. Breadth of participation, or the number of important types of participation in the past month, was lower for autistic adults residing in supported living facilities and for autistic adults with co-occurring psychiatric diagnoses. Breadth was greater for autistic adults with self-reported service needs. Our study findings offer important information to guide implementation of new federal requirements aimed at promoting greater community participation among individuals covered by Medicaid.
      Citation: Autism
      PubDate: 2021-01-25T01:02:52Z
      DOI: 10.1177/1362361320987682
       
  • Cross-cultural perspectives on the meaning of family quality of life:
           Comparing Korean immigrant families and Canadian families of children with
           autism spectrum disorder
    • Authors: Vanessa C. Fong, Emily Gardiner, Grace Iarocci
      Abstract: Autism, Ahead of Print.
      This study sought to examine and compare conceptualizations and descriptions of family quality of life, from the perspectives of Korean immigrant and Canadian families of children with autism spectrum disorder. Thematic analysis of semi-structured interviews from 13 Korean immigrant parents and 12 Canadian parents of children with autism living in BC, Canada was conducted. For Korean immigrant families, three themes were identified: family cohesiveness, value orientation, and acceptance from society. For Canadian families, themes comprising family interactions, support, emotional well-being, individual characteristics, and comparisons to other families were essential elements in defining their family quality of life. Findings highlight how cultural values and differences may translate into different conceptualizations of family quality of life and underscore the need for cross-cultural and diverse perspectives in the study and development of future assessment tools.Lay abstractThe purpose of this study was to compare Korean immigrant families and Canadian families of children with autism in their perceptions and definitions of family quality of life. Interviews were done with 13 Korean immigrant parents and 12 Canadian parents of children with autism living in BC, Canada. For Korean immigrant families, three themes were identified: family cohesiveness, value orientation, and acceptance from society. For Canadian families, themes comprising family interactions, support, emotional well-being, individual characteristics, and comparisons to other families were essential elements in defining their family quality of life. The findings emphasize how differences in culture may impact how we understand and assess family functioning and quality of life. If research informing the development of these tools lacks cross-cultural perspectives, service providers and professionals may fail to address these families’ unique needs.
      Citation: Autism
      PubDate: 2021-01-23T04:57:56Z
      DOI: 10.1177/1362361321989221
       
  • Reduced differentiation of emotion-associated bodily sensations in autism
    • Authors: Eleanor R Palser, Alejandro Galvez-Pol, Clare E Palmer, Ricci Hannah, Aikaterini Fotopoulou, Elizabeth Pellicano, James M Kilner
      Abstract: Autism, Ahead of Print.
      Differences in understanding emotion in autism are well-documented, although far more research has considered how being autistic impacts an understanding of other people’s emotions, compared to their own. In neurotypical adults and children, many emotions are associated with distinct bodily maps of experienced sensation, and the ability to report these maps is significantly related to the awareness of interoceptive signals. Here, in 100 children who either carry a clinical diagnosis of autism (n = 45) or who have no history of autism (n = 55), we investigated potential differences in differentiation across autistic children’s bodily maps of emotion, as well as how such differentiation relates to the processing of interoceptive signals. As such, we measured objective interoceptive performance using the heartbeat-counting task, and participants’ subjective experience of interoceptive signals using the child version of the Body Perception Questionnaire. We found less differentiation in the bodily maps of emotion in autistic children, but no association with either objective or subjective interoceptive processing. These findings suggest that, in addition to previously reported differences in detecting others’ emotional states, autistic children have a less differentiated bodily experience of emotion. This does not, however, relate to differences in interoceptive perception as measured here.Lay abstractMore research has been conducted on how autistic people understand and interpret other people’s emotions, than on how autistic people experience their own emotions. The experience of emotion is important however, because it can relate to difficulties like anxiety and depression, which are common in autism. In neurotypical adults and children, different emotions have been associated with unique maps of activity patterns in the body. Whether these maps of emotion are comparable in autism is currently unknown. Here, we asked 100 children and adolescents, 45 of whom were autistic, to color in outlines of the body to indicate how they experienced seven emotions. Autistic adults and children sometimes report differences in how they experience their internal bodily states, termed interoception, and so we also investigated how this related to the bodily maps of emotion. In this study, the autistic children and adolescents had comparable interoception to the non-autistic children and adolescents, but there was less variability in their maps of emotion. In other words, they showed more similar patterns of activity across the different emotions. This was not related to interoception, however. This work suggests that there are differences in how autistic people experience emotion that are not explained by differences in interoception. In neurotypical people, less variability in emotional experiences is linked to anxiety and depression, and future work should seek to understand if this is a contributing factor to the increased prevalence of these difficulties in autism.
      Citation: Autism
      PubDate: 2021-01-23T04:54:15Z
      DOI: 10.1177/1362361320987950
       
  • Intensive behavioural interventions based on applied behaviour analysis
           for young children with autism: An international collaborative individual
           participant data meta-analysis
    • Authors: Mark Rodgers, Mark Simmonds, David Marshall, Robert Hodgson, Lesley A Stewart, Dheeraj Rai, Kath Wright, Esther Ben-Itzchak, Svein Eikeseth, Sigmund Eldevik, Hanna Kovshoff, Iliana Magiati, Lisa A Osborne, Phil Reed, Giacomo Vivanti, Ditza Zachor, Ann Le Couteur
      Abstract: Autism, Ahead of Print.
      This individual participant data meta-analysis is the most intensive possible evaluation of the effectiveness of early intensive applied behaviour analysis–based interventions for pre-school autistic children compared with treatment as usual/eclectic interventions. Data from 491 participants (originally collected in 10 studies) were included. Children receiving early intensive applied behaviour analysis–based interventions improved more on the Vineland adaptive behaviour scale (MD = 7.00; 95% confidence interval = 1.95–12.06) and cognitive ability (intelligence quotient) (MD = 14.13; 95% confidence interval = 9.16–19.10) relative to comparators at 2 years; though effects varied considerably across studies. Evidence for other outcomes was inconclusive due to insufficient evidence and there were few data on longer-term effects. All studies were at risk of bias across several domains, often due to the lack of randomisation or blinding of outcome assessors. Given the emerging evidence of modest, albeit short term, effects of a range of pre-school autism interventions and the limitations of the quality of evaluation studies to date, future research should investigate which supports and interventions are most effective for children and families prioritising outcomes measures that are meaningful for the autism community and longer-term follow-up. Further systematic reviews of the existing evidence are unlikely to add to the findings presented here.Lay abstractEarly intensive applied behaviour analysis–based interventions are designed to support young autistic children’s learning and development. Unfortunately, the available evidence about the effectiveness of these interventions remains unclear. Several reviews have focused on the published findings rather than contacting the authors to collect and analyse data about the individual participants in the original studies. Also, most of the studies were carried out by groups involved in delivering the interventions leading to the potential bias in interpreting the results. Our research team (supported by an international advisory group) carried out an independent individual patient data review by collecting the original participant data from the authors of the studies, to examine the effectiveness of these interventions. The results suggested that early intensive applied behaviour analysis–based interventions might lead to some changes in children’s cognitive ability (intelligence quotient) and everyday life skills after 2 years, compared with standard treatments. However, all the studies had problems with the way they were designed. Also, few of the studies looked at outcomes that have been described as most important to autistic people or followed children beyond 2 years. We think that further systematic reviews of the existing evidence are unlikely to add to the findings of our review. Furthermore, we recommend that future research should investigate which types of supports and interventions are most effective for children and families, prioritising outcomes measures that are meaningful for the autism community and include, wherever possible, longer-term follow-up.
      Citation: Autism
      PubDate: 2021-01-23T04:37:15Z
      DOI: 10.1177/1362361320985680
       
  • Effects of autism acceptance training on explicit and implicit biases
           toward autism
    • Authors: Desiree R Jones, Kilee M DeBrabander, Noah J Sasson
      Abstract: Autism, Ahead of Print.
      Non-autistic adults often hold explicit and implicit biases toward autism that contribute to personal and professional challenges for autistic people. Although previous research indicates that non-autistic adults with higher autism knowledge and familiarity express more inclusionary attitudes, it remains unclear whether training programs designed to promote autism acceptance and understanding affect subsequent implicit and explicit biases toward autism. In this study, non-autistic adults (N = 238) completed an autism acceptance training featuring factual information and engaging first-person narratives, a general mental health training not mentioning autism, or a no-training control, then responded to surveys assessing their autism knowledge, stigma, and impressions of autistic adults, and completed a novel implicit association task about autism. Non-autistic adults in the autism acceptance training condition reported more positive impressions of autistic adults, demonstrated fewer misconceptions and lower stigma about autism, endorsed higher expectations of autistic abilities, and expressed greater social interest in hypothetical and real autistic people. However, training had no effect on implicit biases, with non-autistic adults associating autism-related labels with unpleasant personal attributes regardless of training condition. These findings suggest that the autism acceptance training program in this study, designed to increase autism knowledge and familiarity among non-autistic people, holds promise for reducing explicit but not implicit biases toward autism.Lay abstractAutistic adults face prejudice from non-autistic people. They are often judged unfairly and left out of social activities because of their differences. This can make it difficult for autistic people to make friends and find jobs. Some training programs have tried to teach autistic people to act more like non-autistic people to help them gain acceptance. Fewer have focused on teaching non-autistic people how to be more autism friendly. In this study, we used a short training video that teaches people about autism. The video was created with the help of autistic adults and included clips of real autistic people. We found that non-autistic people who watched this video had better knowledge about autism and showed more autism-friendly attitudes than those who watched a video about mental health or those who did not watch any video. They were more open to having a relationship with an autistic person and had more positive beliefs about autism. However, our video did not affect people’s unconscious attitudes about autism. People in our study connected autism with unpleasant traits, even if they had watched the autism training video. This suggests that teaching non-autistic people about autism may promote more autism-friendly attitudes, but some beliefs may be harder to change.
      Citation: Autism
      PubDate: 2021-01-21T07:13:07Z
      DOI: 10.1177/1362361320984896
       
  • Differential predictors of well-being versus mental health among parents
           of pre-schoolers with autism
    • Authors: Cherie C Green, Jodie Smith, Catherine A Bent, Lacey Chetcuti, Rhylee Sulek, Mirko Uljarević, Kristelle Hudry
      Abstract: Autism, Ahead of Print.
      Extensive research has shown elevated mental health difficulties among parents of children with autism compared to other parents. Although several studies have explored factors related to mental health among parents of children with autism, the factors that influence and promote well-being remain poorly characterised. Parents of young, newly diagnosed autistic children may also be particularly vulnerable to stressors that impact mental health and well-being. We examined child-, parent-, and family/socioeconomic factors associated with concurrent mental health and well-being among 136 parents of young children with autism, aged 13–48 months. Parental mental health was predicted by both trait negative emotionality and reported child autism symptoms, while well-being was predicted by parent factors alone, including trait extraversion and mindfulness. Broader child characteristics and family/socioeconomic contextual factors made no significant contribution in regression models. While the mental health and well-being of parents with young autistic children are associated with one another, unique predictors seem to exist. That well-being was uniquely predicted by a modifiable parent characteristic – mindfulness – suggests the potential for early supports to bring direct benefits for parents, in the context of raising a young child with autism.Lay abstractRaising a child with autism has been linked to mental health difficulties. Poor parental mental health is likely influenced by various factors – including child-, parent-, and family/socioeconomic characteristics. However, little is known about what influences and promotes well-being (as opposed to mental health) among parents of young, newly diagnosed autistic children who may be particularly vulnerable. We examined child-, parent-, and family/socioeconomic factors associated with each of mental health and well-being in a sample of 136 parents of pre-school-aged children. Parental mental health was linked to both child- (i.e. autism symptom severity) and parent-related factors (i.e. personality traits reflecting a tendency to experience negative emotions). By contrast, in additional to mental health difficulties, which were linked to well-being, only other parent-related characteristics (and not child characteristics) were related to well-being. These included personality traits reflecting a tendency to be more extraverted/sociable, and also mindfulness. Other child-related and family/socioeconomic context factors (including household income, parental education level) were not linked to parental mental health or well-being in this sample. These results support the idea that poorer mental health and well-being are not simply the opposite of one another. That is, while these two factors were related, they were linked to different personal characteristics. Perhaps most importantly, the link between well-being and mindfulness – a personal characteristic that parents can improve – suggests mindfulness-based interventions may be helpful in directly supporting parental well-being in the context of raising a young child with autism.
      Citation: Autism
      PubDate: 2021-01-21T07:11:46Z
      DOI: 10.1177/1362361320984315
       
  • Can pictorial narration offer a solution to teacher training on the
           effective inclusion of students with autism spectrum disorder in
           low-resource settings' Investigation on knowledge and stigma change
    • Authors: Hui Min Low, Tze Peng Wong, Lay Wah Lee, Somchay Makesavanh, Bountheing Vongsouangtham, Vikate Phannalath, Aznan Che Ahmad, Ann Sien Sut Lee
      Abstract: Autism, Ahead of Print.
      The main aim of this article is to explore whether pictorial narration could offer a solution to teacher training on the effective inclusion of students with autism spectrum disorder in a low-resource context in the Lao People’s Democratic Republic. For this purpose, pre- and post-training knowledge data were collected from 87 Laotian teachers who participated in teacher training using a pictorial narrative e-module called The Story of KhamdyTM. The teacher training included a half-day orientation workshop, followed by 4 weeks of online learning. Statistically significant improvement in autism spectrum disorder knowledge and reduction in autism spectrum disorder stigma was recorded for the teachers after completing the teacher training. The findings on social validity pointed to high acceptance toward the pictorial narrative method and the content designed for the purpose of this training. The teachers’ acceptance of the training method was found to have positive effects on their knowledge changes in the diagnosis and etiology aspects of autism spectrum disorder knowledge. The findings supported the use of a pictorial narration approach in imparting knowledge about inclusive education and autism spectrum disorder to teachers in a least developed country. The findings offered insights to explain the knowledge change and stigma reduction recorded.Lay abstractIn this study, we explored whether pictorial narration could offer a solution to teacher training on effective inclusion of students with autism spectrum disorder in the Lao People’s Democratic Republic. For this purpose, pre- and post-training knowledge data were collected from 87 Laotian teachers who participated in teacher training using a pictorial narrative e-module called The Story of KhamdyTM. The teachers’ knowledge test results and feedback were analyzed. The findings indicated that teachers’ acceptance toward the training method had positive effects on their knowledge changes and supported the use of a pictorial narration approach in imparting knowledge about inclusive education and autism spectrum disorder to teachers in a least developed country.
      Citation: Autism
      PubDate: 2021-01-20T05:06:37Z
      DOI: 10.1177/1362361320984899
       
  • Health characteristics of reproductive-aged autistic women in Ontario: A
           population-based, cross-sectional study
    • Authors: Ami Tint, Hilary K Brown, Simon Chen, Meng-Chuan Lai, Lesley A Tarasoff, Simone N Vigod, Susan Parish, Susan M Havercamp, Yona Lunsky
      Abstract: Autism, Ahead of Print.
      While an increasing number of girls and women are being identified with autism, we know little about the health of reproductive-aged autistic women. Our objectives were to (1) describe health characteristics of reproductive-aged autistic women who could potentially become pregnant and (2) compare these characteristics with those of non-autistic women. We conducted a population-based cross-sectional study using 2017–2018 administrative health data from Ontario, Canada. A total of 6,870 fifteen- to 44-year-old autistic women were identified and compared with 2,686,160 non-autistic women. Variables of interest included social determinants of health (neighborhood income, residential instability, material deprivation, rurality), health (co-occurring medical and psychiatric conditions, use of potentially teratogenic medications, history of assault), and health care factors (continuity of primary care). Overall, reproductive-aged autistic women had poorer health compared with non-autistic women, including increased rates of material deprivation, chronic medical conditions, psychiatric conditions, use of potentially teratogenic medications, and history of assault. These findings highlight the need for health interventions tailored to the needs of reproductive-aged autistic women.Lay abstractWhile an increasing number of girls and women are being identified with autism, we know little about reproductive-aged autistic women’s health. This study used administrative data from Ontario, Canada, to compare the health of reproductive-aged autistic women with non-autistic women. Overall, reproductive-aged autistic women had poorer health compared with non-autistic women, including increased rates of material deprivation, chronic medical conditions, psychiatric conditions, history of assault, and use of potentially teratogenic medications (i.e. drugs that can be harmful to the development of an embryo or fetus). These findings suggest that there is a need for health interventions tailored to the needs of reproductive-aged autistic women.
      Citation: Autism
      PubDate: 2021-01-20T05:02:37Z
      DOI: 10.1177/1362361320982819
       
  • Core experiences of parents of children with autism during the COVID-19
           pandemic lockdown
    • Authors: Itay Tokatly Latzer, Yael Leitner, Orit Karnieli-Miller
      Abstract: Autism, Ahead of Print.
      The lockdown that was imposed by governments as part of the attempt to contain the COVID-19 pandemic included extreme measures, such as home confinement and the shutting down of special education systems. Our aim was to learn about the core experiences of parents of children with autism during this significant life disturbance. Thirty-one parents of 25 children with autism participated in semi-structured telephone interviews which were transcribed verbatim and underwent a qualitative, immersion/crystallization analysis. The analysis was conducted in an iterative consensus-building process to identify parents’ experiences, concerns, challenges, coping strategies, and perceived needs during the lockdown. The main themes that emerged related to the various parental concerns; the major difficulties encountered during this unique time, the functional, social, and behavioral implications the lockdown had on these children; and the manner in which the parents coped as an indication of their resourcefulness and outlook. Our findings broaden the insight into the underlying elements of the hardships and gains experienced by children with autism and their parents in times of significant life adversity. Programs in such times should be directed at supporting and guiding parents on how to better accommodate to the situation, thereby optimizing their coping strategies and resilience.Lay abstractThe lockdown and home isolation due to the COVID-19 pandemic led to significant transformation in lifestyles. Being a parent in this situation was not easy for anyone, much less for parents of children with special needs. The shutting down of special education systems meant that parents lost a vital support network and had to be the sole full-time caregivers despite often lacking the skills to cope with this new and daunting situation. We interviewed parents and learned that the main difficulties faced by homebound autistic children stemmed from the change in routine, lack of special education services, limited physical space, and food- and sleep-related issues. Some children experienced worsening in behavioral, social, and developmental domains, yet others seemed to not only overcome the challenges of changing conditions but even benefit from them. The children’s success or failure was directly related to how their parents coped. The key factors that enabled successful coping were the parents’ ability to accommodate to the child’s needs, their own creativeness and resourcefulness, and a generally positive outlook. The results of this analysis revealed that the best way to benefit autistic children caught up in drastic changes in their routine lifestyle is to invest in a strong support system for their parents.
      Citation: Autism
      PubDate: 2021-01-13T05:29:32Z
      DOI: 10.1177/1362361320984317
       
  • End-user perspectives on the development of an online intervention for
           parents of children on the autism spectrum
    • Authors: Susannah Hermaszewska, Jacqueline Sin
      Abstract: Autism, Ahead of Print.
      Strong evidence suggests that parents of children on the autism spectrum face increased stressors to their physical and mental wellbeing due to the demands of caregiving and paucity of support. The disparity between the services currently offered and unmet needs indicates that accessible and flexible support through online delivery is needed for parents. This study presents the ideas and perspectives collected from five focus groups of 17 parents of autistic children, on the optimal content and implementation strategy of an online intervention. Using thematic framework analysis, we derived themes under the categories: the need for online interventions; content and design; and implementation. Parents supported the development of a multicomponent online intervention which combines psychoeducation with peer-support and access to healthcare professionals.Lay abstractParent caregivers play an essential role in the lives of individuals on the autism spectrum. The demands of caregiving can have negative effects on the mental and physical wellbeing of parents. Different types of formal support have been developed to help parents to cope with caregiving; however, many parents struggle to access services due to limited availability and busy schedules. The Internet could offer parents more accessible and flexible support. We asked 17 parents what content they would like to include in an online resource. Parents told us about their experiences trying to access and use existing formal support and websites. They overwhelmingly supported the development of an online resource informed by their suggestions. Parents emphasised the need for easier access to information through educational components and direct access to healthcare professionals online. Parents also wanted help with finding existing services and reliable, locally relevant information. Parents stressed the need for a safe environment to meet and chat with other parents online. This research forms the first stage in the development process of an online health resource for parents.
      Citation: Autism
      PubDate: 2021-01-11T09:47:59Z
      DOI: 10.1177/1362361320984895
       
  • Physical activity and screen time among youth with autism: A longitudinal
           analysis from 9 to 18 years
    • Authors: J Dahlgren, S Healy, M MacDonald, J Geldhof, K Palmiere, JA Haegele
      Abstract: Autism, Ahead of Print.
      To date, studies using cross-sectional methodologies make up a majority of the literature surrounding children with autism spectrum disorders and participation in physical activity and screen time. Longitudinal studies are needed to examine how physical activity and screen time behaviors co-develop for children with and without an autism spectrum disorder. To address this research gap, this study compared how physical activity and screen time levels changed over time (9 to 18 years of age) between youth with autism spectrum disorder and youth with neurotypical development. Data on the levels of moderate-to-vigorous physical activity, light physical activity, television-, and video game-based screen time, collected as a part of the “Growing up in Ireland” study, were compared between youth with autism spectrum disorder and a propensity-matched sample of youth with neurotypical development (n = 88 per group; 176 in total). Robust regression analyses indicated that children with autism spectrum disorder became less active over time compared to children with neurotypical development and that video game screen time also differed significantly between the groups when children were 9 years old. These findings elucidate important disparities present between these groups of children during pivotal developmental times.Lay abstractTo date, studies using cross-sectional methodologies make up a majority of the literature surrounding children with autism spectrum disorders and participation in physical activity and screen time. Longitudinal studies are needed to examine how physical activity and screen time behaviors co-develop for children with and without an autism spectrum disorder. To address this research gap, this study compared how physical activity and screen time levels changed over time (from 9 to 18 years of age) between youth with autism spectrum disorder and youth with neurotypical development. Data on the levels of moderate-to-vigorous physical activity, light physical activity, television-, and video game-based screen time, collected as a part of the “Growing up in Ireland” study, were compared between youth with autism spectrum disorder and a propensity-matched sample of youth with neurotypical development (n = 88 per group; 176 in total). Robust regression analyses indicated that children with autism spectrum disorder became less active over time compared to children with neurotypical development and that video game screen time also differed significantly between the groups when children were 9 years old. These findings elucidate important disparities present between these groups of children during pivotal developmental times.
      Citation: Autism
      PubDate: 2021-01-07T08:57:47Z
      DOI: 10.1177/1362361320981314
       
  • Enhancing developmental–behavioral pediatric rotations by teaching
           residents how to evaluate autism in primary care
    • Authors: Jeffrey F Hine, Liliana Wagner, Rachel Goode, Verity Rodrigues, Julie Lounds Taylor, Amy Weitlauf, Zachary E Warren
      Abstract: Autism, Ahead of Print.
      Most pediatric residency programs do not provide adequate practical experiences for residents in autism-related care, with a specific dearth of training in diagnostic processes. Without this training, residents enter the primary care workforce with uncertainty surrounding implementation of standard-of-care recommendations for children with autism. Our curriculum was designed to improve upon previously passive shadowing experiences within our developmental–behavioral pediatric rotation by integrating hands-on training in within-practice diagnostic identification and care coordination. In addition to multiple web-based learning activities (including a tutorial teaching administration of an interactive assessment tool), residents were required to actively participate in autism evaluations under supervision of an attending provider. Data were collected to assess feasibility of curricular changes as well as increased comfort level across recommended practice behaviors. Regarding feasibility, 95% of residents completed training components and pre-/post-ratings indicated significant increases in comfort in identifying symptoms/risk for autism, providing feedback about diagnostic decision, and effectively connecting families with services. Outcomes suggest feasibility of model and significantly increased resident comfort level across a range of recommended practice behaviors. This project reflects a first step in advancing incorporation of autism training into pediatric residency programs.Lay abstractMost physician preparation programs do not provide enough practical experiences in autism-related care. This is especially true for how to assess for and diagnose autism. Without this training, many pediatricians are not well prepared to implement appropriate care for children with autism and their families. We designed a curriculum to improve training for medical residents that involved explicit hands-on training in diagnostic identification and care coordination for toddlers at risk for autism. We collected data to assess whether our enhanced curriculum led to increased comfort level across recommended practice behaviors. Almost all the residents were able to complete the training within their rotation and our surveys indicated significant increases in residents feeling more comfortable identifying symptoms of autism, providing feedback about diagnostic decisions, and effectively connecting families with services. A significant majority of residents considered it appropriate or very appropriate for children to receive a diagnosis solely from a primary care provider. Our results suggest feasibility of the enhanced model, and this project reflects the first step in advancing incorporation of autism training into pediatric residency programs.
      Citation: Autism
      PubDate: 2021-01-06T05:12:40Z
      DOI: 10.1177/1362361320984313
       
  • Short report: Autistic parents’ views and experiences of talking about
           autism with their autistic children
    • Authors: Laura Crane, Lok Man Lui, Jade Davies, Elizabeth Pellicano
      Abstract: Autism, Ahead of Print.
      Little is known about how parents talk about autism with their autistic children, particularly among families in which both a parent and child are autistic. Using an online survey, we gathered quantitative and qualitative data from 34 autistic parents (most of whom had told their children about their diagnosis) to address this knowledge gap. There was considerable overlap between the views and experiences of the autistic parents in this study and the largely non-autistic parent samples in previous research. Specifically, parents emphasised the importance of being open and honest about the diagnosis, disclosing the diagnosis as early as possible, individualising discussions to children’s needs and framing the diagnosis positively. There were, however, areas in which the views and experiences of the current sample differed from previous research on non-autistic samples. First, our sample of autistic parents outlined the benefits of their own experiential expertise, which they felt resulted in heightened understanding and empathy with their children. Second, our sample tended not to express concerns about disclosure potentially having a negative impact. Finally, our participants did not express a want or need for professional support with disclosure. Instead, they reported feeling well equipped to support their children using their own knowledge and lived experience.Lay abstractPrevious research examining how parents talk about autism with their children has tended to focus on parents who are not autistic themselves. We collected information on this topic from 34 autistic parents of autistic children (most of whom had told their children about their diagnosis). We found similarities, but also differences, between the views and experiences of autistic parents in this research and those reported in previous research (in studies of largely non-autistic parents). Similarities include the following: it is important to be open and honest about the diagnosis; the diagnosis should be introduced/discussed as early as possible; discussions should be tailored to each individual child’s needs; and we should not overlook the challenges associated with autism, but it is important to focus on positive aspects too. Differences include the following: autistic parents used personal experiences in conversations about autism, which was felt to result in increased understanding and empathy with their children; autistic parents overwhelmingly focused on more positive aspects of an autism diagnosis; our sample did not express concerns that discussions could have negative consequences too (e.g. making children more anxious); and autistic parents did not want or need professional support to talk about autism with their children (instead, they felt confident in using their own knowledge/experiences to guide discussions).
      Citation: Autism
      PubDate: 2021-01-05T04:37:13Z
      DOI: 10.1177/1362361320981317
       
  • Ameliorating the disadvantage for autistic job seekers: An initial
           evaluation of adapted employment interview questions
    • Authors: Katie Maras, Jade Eloise Norris, Jemma Nicholson, Brett Heasman, Anna Remington, Laura Crane
      Abstract: Autism, Ahead of Print.
      Despite possessing valuable skills, social communication differences mean that autistic people are frequently disadvantaged in job interviews. We examined how autistic and non-autistic adults compared on standard (unmodified) job interview questions, and then used these findings to develop and evaluate supportive adaptations to questions. Fifty adults (25 autistic, 25 non-autistic) took part in two mock job interviews. Interview 1 provided a baseline measure of performance when answering typical, unmodified interview questions. Employment experts (unaware of participants’ autism diagnoses) rated all interviewees on question-specific performance and overall impressions and then provided feedback about how interviewees could improve and how questions could be adapted to facilitate this. Interviewees also provided feedback about the interview process from their perspective. Adaptations to the questions were developed, with Interview 2 taking place approximately 6 months later. Results demonstrated that, in Interview 1, employment experts rated autistic interviewees less favourably than nonautistic interviewees. Ratings of both autistic and non-autistic participants’ answers improved in Interview 2, but particularly for autistic interviewees (such that differences between autistic and non-autistic interviewees’ performance reduced in Interview 2). Employers should be aware that adaptations to job interview questions are critical to level the playing field for autistic candidates.Lay abstractDespite possessing valuable skills, differences in the way that autistic people understand and respond to others in social situations mean that they are frequently disadvantaged in job interviews. We examined how autistic and non-autistic adults compared on standard (unmodified) job interview questions, and then used these findings to develop and evaluate supportive adaptations to questions. Fifty adults (25 autistic, 25 non-autistic) took part in two mock job interviews. Interview 1 provided a baseline measure of performance when answering typical, unmodified interview questions. Employment experts (unaware of participants’ autism diagnoses) rated all interviewees on their responses to each question and their overall impressions of them and then provided feedback about how interviewees could improve and how questions could be adapted to facilitate this. Interviewees also provided feedback about the interview process, from their perspective. Adaptations to the questions were developed, with Interview 2 taking place approximately 6 months later. Results demonstrated that, in Interview 1, employment experts rated autistic interviewees less favourably than non-autistic interviewees. Ratings of both autistic and non-autistic participants’ answers improved in Interview 2, but particularly for autistic interviewees (such that differences between autistic and non-autistic interviewees’ performance reduced in Interview 2). Employers should be aware that adaptations to job interview questions are critical to level the playing field for autistic candidates.
      Citation: Autism
      PubDate: 2020-12-19T06:02:36Z
      DOI: 10.1177/1362361320981319
       
  • Autism in the Western Cape province of South Africa: Rates,
           socio-demographics, disability and educational characteristics in one
           million school children
    • Authors: Sarosha Pillay, Madeleine Duncan, Petrus J de Vries
      Abstract: Autism, Ahead of Print.
      The prevalence of autism spectrum disorder in South Africa is unknown and, to date, very little research has been performed within school systems that could inform the rates, distribution and profile of needs of children with autism spectrum disorder in education. We performed a comprehensive database search of all children with autism spectrum disorder in the formal education system in the Western Cape province of South Africa and compared the findings with population demographic expectations of the province. From a population of 1,154,353 children attending schools in the province, a total of 940 children with a diagnosis of autism spectrum disorder were identified, representing a rate of 0.08%. The male: female ratio was 5.5:1. There was a significant difference in the self-reported racial and language composition of the autism spectrum disorder sample compared with the Western Cape demographics where a higher proportion of children with autism spectrum disorder were from White racial groups and English-speaking homes. Eighty-nine percent of children with autism spectrum disorder were in Special Schools and only 10% were in Ordinary/Mainstream Schools. Most of the children (83%) attended schools in the City of Cape Town and only 17% in rural areas. Co-occurring intellectual disability was reported in 22.2% of the population, attention-deficit/hyperactivity disorder in 2.6% and epilepsy in 0.7%. Data showed a 76.03% increase in autism spectrum disorder in schools between 2012 and 2016, with an average increase of 15.18% per year. Findings suggested an under-representation of autism spectrum disorder in schools and an under-identification of co-occurring conditions. Results indicate that despite being one of the better-resourced provinces in South Africa, the Western Cape is not equipped to identify and meet the culturally and linguistically diverse needs of its communities. We propose strengthening of educational systems for children with autism spectrum disorder in the Western Cape, and similar investigations in other South African provinces.Lay abstractThere is very little information about autism spectrum disorder in South Africa and not much is known about children with autism spectrum disorder and their educational needs. In this study, we searched for all children with autism spectrum disorder attending schools in the Western Cape province of South Africa and compared our findings with the profile of people living in the province. We found fewer children with autism spectrum disorder in schools than expected (0.08%) and co-occurring conditions (intellectual disability = 22.2%, attention-deficit/hyperactivity disorder = 2.6% and epilepsy = 0.7%) were reported at lower rates. More children were from White racial groups and from English-speaking homes compared with the Western Cape population demographics. Most of the children (89%) attended schools for children with Special Educational Needs and only 10% were in Ordinary/Mainstream schools. Eighty-three percent attended schools in urban areas and 17% in rural areas. There was a 76.03% increase in children with autism spectrum disorder in schools between 2012 and 2016. Our findings support the need for better identification and reporting of children with autism spectrum disorder in the education system. We propose urgent review and strengthening of education systems for children with autism spectrum disorder in the Western Cape province and in other parts of South Africa.
      Citation: Autism
      PubDate: 2020-12-18T07:52:06Z
      DOI: 10.1177/1362361320978042
       
  • Autism screening and conditional cash transfers in Chile: Using the
           Quantitative Checklist (Q-CHAT) for early autism detection in a low
           resource setting
    • Authors: Andres Roman-Urrestarazu, Carolina Yáñez, Claudia López-Garí, Constanza Elgueta, Carrie Allison, Carol Brayne, Mónica Troncoso, Simon Baron-Cohen
      Abstract: Autism, Ahead of Print.
      Diagnosis of Autism Spectrum Conditions (ASC) can be an extended procedure since ASC tend to both vary greatly across individual symptoms and diagnostic pathways with serious challenges to opportune access and diagnosis in low resource settings. We adapted the Q-CHAT-25 for use in a routine health check-ups programme at Chilean primary health clinics by developing a 10-item version of this questionnaire recruiting n = 287 (F: 112/M: 175) participants (Controls: n = 125, F: 58/M: 67; Developmental Delay: n = 149, F: 53/M: 96; Autism Spectrum Conditions: n = 13, F: 1/M: 12). Our findings show that the Q-CHAT-10 can be successfully applied in health-check programmes. The results for the Q-CHAT-10 show high internal consistency (Cronbach’s α: 0.85) and good overall performance, significantly correlating (r = 0.79, p 
      Citation: Autism
      PubDate: 2020-12-17T04:58:48Z
      DOI: 10.1177/1362361320972277
       
  • Physical health needs and self-reported health status among adults with
           autism
    • Authors: Paul Turcotte, Lindsay Shea
      Abstract: Autism, Ahead of Print.
      Self-reported health status is an integral method to understand how adults on the autism spectrum perceive their healthcare and service needs. The objective of the study is to examine how self-reported health changes with use and need of physical health services. The Pennsylvania autism needs assessment included a survey of adults on the autism spectrum responding for themselves. Self-reported health status change over the previous year was reported as improved, decreased, or stable. Adjusted multinomial logistic regression was used to identify characteristics of individuals who experienced decreased or improved health. A total of 1197 adults responded, with most respondents’ health remaining stable (68%). Respondents who had a decreased health status reported needing more physical health services (1.64 services) compared to respondents with stable health (1.07 services) and improved health (1.18 services). Respondents with a decreased health status had 1.23 higher odds (95% confidence interval: 1.08–1.40) of having an increase in one physical health service need as compared to those whose health remained stable. Increased physical health service needs were associated with a decreased health status. Adults on the autism spectrum can present with a complex array of needs and determining the role physical health services play in improving and maintaining health remains critical.Lay abstractSelf-reported health can be a powerful measure of how adults with autism spectrum disorder view their overall health. The goal of this study was to determine how health statuses of adults with autism spectrum disorder change, when they are currently receiving or need more physical health services. The Pennsylvania autism needs assessment included a survey of individuals with autism aged 18 years or older responding for themselves. They indicated whether their health status changed over the previous year as improved, decreased, or remained stable. We found that most adults with autism spectrum disorder had their health remain the same (68%). We also found that adults who said their health got worse needed more physical health services, compared to those whose health remained stable, or got better. Supporting the health of adults with autism can be complex and finding out more about how physical health services play a role in that care is important.
      Citation: Autism
      PubDate: 2020-12-16T09:37:29Z
      DOI: 10.1177/1362361320971099
       
  • Embedding school cultures and climates that promote evidence-based
           practice implementation for youth with autism: A qualitative study
    • Authors: Nathaniel J Williams, Lindsay Frederick, Alix Ching, David Mandell, Christina Kang-Yi, Jill Locke
      Abstract: Autism, Ahead of Print.
      Schools play a major role in delivering behavioral health services to autistic youth. School culture and climate are strong predictors of the extent to which these services incorporate evidence-based practices; however, little is known about how school leaders shape culture and climate. Drawing on the concept of culture and climate embedding mechanisms, we conducted a qualitative study to understand the ways in which school principals embed cultures and climates that support effective implementation of evidence-based practices for youth with autism. Semi-structured interviews with 32 teachers in schools that implemented three closely related evidence-based practices for youth with autism (discrete trial training, pivotal response training, and visual schedules) explored teachers’ experiences regarding (a) implementation of the three evidence-based practices, (b) perceptions of school culture and climate, and (c) principals’ behaviors, practices, and decisions that supported or detracted from the aspects of culture and climate that supported successful implementation. Thematic analysis detailed seven mechanisms that principals used to embed cultures and climates that shaped evidence-based practice implementation. These mechanisms represent actionable targets for school leaders and inform strategies to improve the implementation of evidence-based practices for youth with autism in schools.Lay abstractSchools play a major role in providing services to youth with autism; however, not all schools use evidence-based practices, defined as interventions that are proven to improve youth well-being through rigorous research. School culture and climate are strong predictors of whether or not a school uses evidence-based practices; however, little is known about how principals can create school cultures and climates that support the use of these practices. This study interviewed 32 teachers in elementary schools that implemented three closely related evidence-based practices for youth with autism to better understand how principals create school cultures and climates that support effective services. Analysis of the teachers’ responses identified seven strategies principals can use to create school cultures and climates that support the implementation of effective practices for youth with autism. The strategies include the following: (a) support teachers to obtain professional development focused on autism, (b) align performance expectations and evaluations with the needs of students with autism and evidence-based practice delivery, (c) allocate resources to ensure adequate staff, materials, and training are available to implement evidence-based practices, (d) be open and flexible to allow teachers to use the building and resources as needed to meet students’ needs, (e) provide direct assistance, feedback, and coaching to troubleshoot challenges or involve outside experts to do so, (f) openly value the work of special education teachers and provide recognition to those who develop expertise in evidence-based practices, and (g) look for opportunities to integrate special and general education teachers and students to foster a truly inclusive climate.
      Citation: Autism
      PubDate: 2020-12-12T07:24:20Z
      DOI: 10.1177/1362361320974509
       
  • The effectiveness of physical activity interventions on communication and
           social functioning in autistic children and adolescents: A meta-analysis
           of controlled trials
    • Authors: John SY Chan, Kanfeng Deng, Jin H Yan
      Abstract: Autism, Ahead of Print.
      Difficulty with communication and social functioning are two outstanding core symptoms of autism spectrum disorder, and physical activity has long been suggested to improve autism spectrum disorder symptoms. In this meta-analysis of controlled trials, we examined the effects of physical activity interventions compared to controls on communication and social functioning in autistic children and adolescents. Included studies are published articles in English with autism spectrum disorder participants younger than 18 years. Literature search was conducted on MEDLINE, Embase, CINAHL, and related databases through 6 May 2020. Quality of study was assessed with the Cochrane risk-of-bias tool regarding randomization, allocation concealment, blinding, attrition, and selective reporting. We included 12 controlled trials (N = 350) with communication outcomes (k = 8) and/or social functioning outcomes (k = 11). Results show small to moderate intervention benefits on communication (standardized mean change = 0.27, 95% confidence interval (0.06, 0.48)) and social functioning (standardized mean change = 0.39, 95% confidence interval (0.15, 0.63)), but the result for social functioning may be susceptible to publication bias. Better intervention outcomes are observed in younger participants, suggesting the importance of early participation. This study shows the benefits of physical activity interventions, and they could be considered a cost-effective means for autism spectrum disorder management in the future.Lay abstractDifficulty with communication and social functioning are two outstanding core symptoms of autism spectrum disorder, while there is no efficacious pharmacologic treatment available to deal with them. Traditional behavioral therapies usually require specialist therapist and be conducted in specific settings, increasing burdens on families and individuals with autism. Physical activity has long been found to promote physical and mental well-beings, and it is more affordable and versatile than traditional therapies. There is preliminary support for the use of physical activity interventions to improve communication and social functioning in individuals with autism. In this study, we quantitatively aggregate data from existing controlled trials to provide an up-to-date inquiry into the effectiveness of physical activity interventions on communication and social functioning in autistic children and adolescents. We included 12 trials involving 350 participants (8 trials reported communication outcomes and 11 trials reported social functioning outcomes) and found small to moderate benefits on communication and social functioning. Further analyses showed that the benefit of physical activity interventions is greater in younger participants. Results of this study suggest that physical activity interventions are effective to improve communication and social functioning in autistic children and adolescents, and early participation in the interventions can be more beneficial. Given their affordability, versatility, and efficacy, physical activity interventions could be considered a cost-effective option for autism spectrum disorder management in the future.
      Citation: Autism
      PubDate: 2020-12-12T07:23:51Z
      DOI: 10.1177/1362361320977645
       
  • Generosity of state insurance mandates and growth in the workforce for
           autism spectrum disorder
    • Authors: Ryan K McBain, Jonathan H Cantor, Aaron Kofner, Timothy Callaghan, Bradley D Stein, Hao Yu
      Abstract: Autism, Ahead of Print.
      All 50 US states have enacted mandates requiring insurers to cover autism-related services. We assessed whether and to what extent variation in generosity of state insurance mandates has been associated with rate of growth in the health workforce for children with autism spectrum disorder: including board-certified behavioral analysts, child psychiatrists, and pediatricians. Drawing data from the National Conference of State Legislatures and Area Health Resource Files, we evaluated eight mandate policy features, utilizing a fixed-effect longitudinal regression framework to examine their relationships with workforce growth during a 15-year period (2003–2017) over which 44 states enacted a mandate. Aspects of mandate generosity included ages covered, spending caps, and types of services covered. We found that mandate generosity was closely associated with the magnitude of increase in supply of board-certified behavioral analysts and—to a lesser extent—child psychiatrists. States with the most generous mandates would be expected to have 39% more board-certified behavioral analysts and 17% more child psychiatrists in 2017, compared to states with least generous mandates. We found no association between mandate generosity and supply of pediatricians. Collectively, our results suggest that the degree of generosity afforded by mandates may be as important as the passage of mandate legislation itself for encouraging workforce growth.Lay abstractTo improve access to health services for children with autism spectrum disorder, US states have passed laws requiring health insurers to cover autism-related care, commonly known as state insurance mandates. However, the features of mandates differ across states, with some state laws containing very generous provisions and others containing very restrictive provisions such as whether the mandates include children aged above 12 years, whether there is a limit on spending, and whether there are restrictions on the types of services covered. This study examined the relationship between generosity of mandates and growth in the health workforce between 2003 and 2017, a period during which 44 states passed mandates. We found that states that enacted more generous mandates experienced significantly more growth in board-certified behavioral analysts who provide behavioral therapy as well as more growth in child psychiatrists. We did not find differences in the growth of pediatricians, which is a less specialized segment of the workforce. Our findings were consistent across eight different mandate features and suggest that the content of legislation may be as important as whether or not legislation has been passed in terms of encouraging growth in the supply of services for children with autism spectrum disorder.
      Citation: Autism
      PubDate: 2020-12-04T10:14:45Z
      DOI: 10.1177/1362361320976744
       
  • Functional gender differences in autism: An international,
           multidisciplinary expert survey using the International Classification of
           Functioning, Disability, and Health model
    • Authors: Karl Lundin, Soheil Mahdi, Johan Isaksson, Sven Bölte
      Abstract: Autism, Ahead of Print.
      Few studies have addressed gender differences in autism in relation to functioning and across cultures. We aimed to explore functional gender differences in autism from a multidisciplinary, global perspective using the International Classification of Functioning, Disability, and Health. Perceptions among professionals in high-income countries and middle-income countries were examined based on qualitative survey data from N = 225 professionals. Of these, n = 131 professionals provided information on functional gender differences in autism. Thirty-two professionals reported perceiving no gender differences. Remaining respondents (n = 99)—representing 31 countries, all World Health Organization regions, and 10 different professions—were included in a content analysis on functional gender differences, which generated three main categories and 13 subcategories. The subcategories were subsequently linked to International Classification of Functioning, Disability, and Health categories. Autistic males were described as displaying more externalizing behaviors, and females as having more internalizing problems and being more socially motivated. Thirty-two International Classification of Functioning, Disability, and Health categories were identified, of which 31 were covered by the comprehensive Core Set for autism. Gender differences in core symptoms and co-existing problems were acknowledged by professionals from both high-income countries and middle-income countries, while differences in social behaviors, including camouflaging, were more frequently described by experts from high-income countries.Lay abstractIn this study, we explored if professionals working with autistic people in different regions of the world perceive differences between females and males diagnosed with the condition. A total of 131 professionals responded to a survey that included an open question about gender differences in autism. Of these, 32 responded that they do not perceive gender differences in autism. The information provided by the other 99 experts was analyzed to identify common patterns. Three main differences were found, (1) Matching the clinical conceptualization of autism where professionals described differences in core symptoms of autism, and that autistic females were less similar to the conceptualization of autism. In (2) Co-existing problems, professionals described that autistic males display more apparent problems including hyperactivity, while autistic females were perceived as having more internalizing issues such as anxiety and eating disorders. In the last category, (3) Navigating the social environment, experts perceived autistic females as more socially motivated, and more inclined to camouflage social difficulties, making their challenges less evident. Professionals also perceived differences in the social environment, for example, that autistic girls receive more support from their peers while autistic boys are more often bullied. Our results suggest that professionals working in different parts of the world acknowledge gender differences in autism, but also that there might be some regional differences. Finally, we found that gender differences reported by the international professionals could largely be assessed with a shortened version of the International Classification of Functioning by the World Health Organization, specifically developed for autism.
      Citation: Autism
      PubDate: 2020-12-03T06:33:29Z
      DOI: 10.1177/1362361320975311
       
  • Altered DNA methylation in a severe subtype of idiopathic autism: Evidence
           for sex differences in affected metabolic pathways
    • Authors: Valerie W Hu, Yi Hong, Minyi Xu, Henry T Shu
      Abstract: Autism, Ahead of Print.
      Although differences in DNA methylation have been associated with both syndromic and idiopathic autism, differential methylation has not been examined previously with respect to sex differences. The goals of this study were to (1) identify differences in the DNA methylation profiles of lymphoblastoid cell lines derived from a subgroup of severely affected individuals with idiopathic autism and their respective sex-matched siblings, (2) describe autism spectrum disorder–relevant pathways and functions that may be impacted by differentially methylated genes, and (3) investigate sex-dependent differences in methylation patterns and signaling pathways. Our results revealed significant differences in DNA methylation in cells from individuals with idiopathic autism spectrum disorders and from their unaffected sex-matched siblings. The samples were divided either by sex or by separation into discovery and validation groups. The genes in differentially methylated regions were statistically enriched in autism susceptibility genes and canonical pathways commonly associated with autism spectrum disorders, including synaptogenesis, semaphorin, and mammalian target of rapamycin signaling pathways. Differentially methylated region–associated genes in females were additionally associated with pathways that implicate mitochondrial dysfunction and metabolic disorders that may offer some protection against autism spectrum disorders. Further investigations of sex differences are required to develop a fuller understanding of the pathobiology, gene regulatory mechanisms, and differential susceptibility of males and females toward autism spectrum disorders.Lay abstractThis study investigates altered DNA methylation that may contribute to autism spectrum disorders. DNA methylation is an epigenetic mechanism for regulating the level at which genes are expressed, and is thus complementary to genetics and gene expression analyses which look at the variations in gene structure and gene products in cells. Here, we identify DNA methylation differences between autistic and sex-matched non-autistic siblings, focusing on a subgroup of severely affected individuals with language impairment to reduce the clinical heterogeneity among the cases. Our results show significant differentially methylated genes between the sibling groups that are enriched in autism risk genes as well as in signaling and biochemical pathways previously associated with the pathobiology of autism spectrum disorders. Moreover, we show for the first time that these differences are in part sex dependent, with differentially methylated genes in females associated with pathways that implicate mitochondrial dysfunction and metabolic disorders that may offer some protection to females against autism spectrum disorders. Further investigations of sex differences are required to develop a fuller understanding of the pathobiology, gene regulatory mechanisms, and differential susceptibility of males and females toward autism spectrum disorders.
      Citation: Autism
      PubDate: 2020-12-01T06:29:26Z
      DOI: 10.1177/1362361320971085
       
  • Qualification for upper secondary education in individuals with autism
           without intellectual disability: Total population study, Stockholm, Sweden
           
    • Authors: Isidora Stark, Peiwen Liao, Cecilia Magnusson, Michael Lundberg¹, Dheeraj Rai, Anton Lager, Selma Idring Nordström
      Abstract: Autism, Ahead of Print.
      This study used the Stockholm Youth Cohort, a total population cohort (N = 364,957), to describe patterns and predictors of qualification for upper secondary education, defined by passing graduation grades in core compulsory school subjects in contemporary young individuals diagnosed with autism spectrum disorders without intellectual disability (n = 6138). At the expected age for graduation, 16 years, 29% (adjusted rate difference 95% confidence interval (28.0–30.0)) fewer autistic than non-autistic individuals were qualified for upper secondary education (57% and 86%, respectively). Comorbid attention-deficit hyperactivity disorder further increased this difference. Within the group of autistic students without intellectual disability, female sex and lower family income were associated with non-qualification for upper secondary education. The proportion of students with autism without intellectual disability who qualified for upper secondary education increased at age 20. These findings underline the need for improved support for students with a diagnosis of autism without intellectual disability in mainstream education.Lay abstractObtaining a quality education is important for any individual’s chances of leading a healthy and thriving life. Currently, educational policies in many countries underscore the rights of students with autism to be educated in mainstream schools. While there is some knowledge on school outcomes among students with autism from older studies, little is known about rates of qualification for upper secondary education among children with autism in mainstream schools today. This lack of knowledge is problematic since autism is diagnosed more widely, and prior evidence may not be relevant for individuals with autism and their families today. Using Swedish registers, we therefore examined this in a study including all children and young people in Stockholm County in 2001 through 2011. We found that about two thirds of children with autism without intellectual disability qualified for upper secondary education at the expected age, in comparison with about nine in ten among typically developing peers. We also found that girls with autism had further difficulties obtaining such qualification than boys and that those who were additionally diagnosed with attention-deficit hyperactivity disorder were particularly at risk of non-qualification. Finally, students with autism without intellectual disability had a greater chance of completing compulsory education if given an extended period to graduate. These findings underline the need for supportive interventions for children with autism during compulsory school. They may also challenge the inclusive education policy adopted by majority of western countries, at least in the wake of addressing special needs in mainstream schooling.
      Citation: Autism
      PubDate: 2020-11-28T05:08:30Z
      DOI: 10.1177/1362361320975929
       
  • Identifying children with autism spectrum disorders in Iran using the
           Autism Diagnostic Interview–Revised
    • Authors: Sayyed Ali Samadi, Roy McConkey, Ameneh Mahmoodizadeh
      Abstract: Autism, Ahead of Print.
      The assessment instruments for diagnosing children with autism spectrum disorder have been developed mostly in affluent, English-speaking countries. Among the most popular has been the Autism Diagnostic Interview–Revised. This article reports its use in Iran with the dual aims of confirming the factor structure of the revised Autism Diagnostic Interview when used to assess Iranian children for autism spectrum disorder and to identify the algorithms that best distinguish children with autism spectrum disorder from those who are developing typically and from those with intellectual disability. Study 1 contrasted the Autism Diagnostic Interview–Revised ratings given to 420 children with autism spectrum disorder from those of 110 typically developing children. In Study 2, the Autism Diagnostic Interview–Revised ratings of 720 children with autism spectrum disorder were compared with those of 172 children with intellectual disability, and from those with intellectual disability. Exploratory factor analyses identified one main factor that merged the social interaction and communication items of Autism Diagnostic Interview–Revised, but replicated the repetitive behaviour and verbal factors. Receiver operating characteristic analyses identified suitable cut-off points on the revised factor scores. Also, the age at which symptoms became apparent increased the sensitivity of the algorithm in distinguishing children with autism spectrum disorder from those with intellectual disability. These findings are in line with the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), recommendations and suggest a commonality in autism spectrum disorder presentations across different nations. The methodology used in this research could guide similar adaptations of assessment instruments for use in other cultures.Lay abstractThe diagnosis of autism spectrum disorder is a challenging task. Most of the current assessment scales have been developed in the West. The present study examines the applicability of one of the most used scales (the Autism Diagnostic Interview–Revised) in a Middle-Eastern culture. Two studies were undertaken. In the first, the Autism Diagnostic Interview–Revised ratings given to 420 children with autism spectrum disorder, aged 4–11 years, and 110 typically developing children were contrasted. In Study 2, the Autism Diagnostic Interview–Revised ratings of 720 children with autism spectrum disorder were compared with those of 172 children with intellectual disabilities to find out whether the Autism Diagnostic Interview–Revised scale would discriminate between these two types of developmental disabilities. The studies confirmed the acceptability of the scale to Iranian parents and assessors. However, the summary scores used to determine whether a child was likely to have autism spectrum disorder were recalculated on the two domains of social communication and repetitive behaviours, which were identified in the statistical analyses that are recommended for the evaluation of assessment scales. Thus the translated scale with the modified domain scoring proved very suitable for identifying Iranian children with autism spectrum disorder. Having a common tool such as Autism Diagnostic Interview–Revised will strengthen the opportunities to undertake cross-cultural research into the impact of autism spectrum disorder on the child and families.
      Citation: Autism
      PubDate: 2020-11-28T05:08:09Z
      DOI: 10.1177/1362361320974558
       
  • Characterizing the early vocabulary profiles of preverbal and minimally
           verbal children with autism spectrum disorder
    • Authors: Eileen Haebig, Eva Jiménez, Christopher R Cox, Thomas T Hills
      Abstract: Autism, Ahead of Print.
      Children with autism spectrum disorder often have significant language delays. But do they learn language differently than neurotypical toddlers' We compared the lexical skills of 64 preverbal and minimally verbal children with autism spectrum disorder to 461 vocabulary-size-matched typically developing toddlers. We also examined social features of verb knowledge using a novel collection of social ratings. Children with autism spectrum disorder produced proportionally more verbs than typically developing toddlers. Children with autism spectrum disorder produced proportionally more action and food words, while typically developing toddlers produced proportionally more animal, people words, and animal sounds and sound effects. Children with autism spectrum disorder also produced “mommy” and “daddy” at lower rates. We discuss how these differences may reflect an association between lexical development and weaknesses in social communication.Lay abstractAlthough preverbal and minimally verbal children with autism spectrum disorder represent a significant portion of the autism spectrum disorder population, we have a limited understanding of and characterization of them. Although it is a given that their lexical profiles contain fewer words, it is important to determine whether (a) the words preverbal and minimally verbal children with autism spectrum disorder produce are similar to the first words typically developing children produce or (b) there are unique features of the limited words that preverbal and minimally verbal children with autism spectrum disorder produce. The current study compared the early word profiles of preverbal and minimally verbal children with autism spectrum disorder to vocabulary-matched typically developing toddlers. Children with autism spectrum disorder produced proportionally more verbs than typically developing toddlers. Also, children with autism spectrum disorder produced proportionally more action and food words, while typically developing toddlers produced proportionally more animal words, animal sounds and sound effects, and people words. Children with autism spectrum disorder also produced “mommy” and “daddy” at lower rates. Our findings identified several areas of overlap in early word learning; however, our findings also point to differences that may be connected to core weaknesses in social communication (i.e. people words). The findings highlight words and categories that could serve as useful targets for communication intervention with preverbal and minimally verbal children with autism spectrum disorder.
      Citation: Autism
      PubDate: 2020-11-28T05:07:59Z
      DOI: 10.1177/1362361320973799
       
  • Factors related to parental therapeutic self-efficacy in a parent-mediated
           intervention for children with autism spectrum disorder: A mixed methods
           study
    • Authors: Kaylin M Russell, Brooke Ingersoll
      Abstract: Autism, Ahead of Print.
      Parental self-efficacy, parents’ beliefs in their ability to successfully parent their child, plays an important role in family outcomes when a child has autism spectrum disorder. It is important to consider therapeutic self-efficacy, one’s feelings of self-efficacy regarding their implementation of an intervention, within parent-mediated interventions. The goal of this mixed methods study was to better understand factors that relate to parents’ therapeutic self-efficacy when implementing a telehealth-based parent-mediated intervention. Participants were 51 parents of children with autism spectrum disorder between 17 and 83 months old. Parents reported generally high therapeutic self-efficacy, and global parental self-efficacy was significantly related therapeutic self-efficacy. Thematic analysis of parents’ written reflections of the intervention’s lessons identified four themes that related to therapeutic self-efficacy: the importance of a good fit between the child’s skills and the intervention, the importance of a good fit between the parent’s interaction style and the intervention, environmental factors support intervention use, and the importance of the child’s response to the intervention. Several themes differed for parents with higher and lower therapeutic self-efficacy. Findings suggest that global parental self-efficacy plays an important role in parental therapeutic self-efficacy in parent-mediated interventions. Coaches should specifically ask about the child’s skills, parent’s interaction style, environmental challenges, and child’s response as they support parents in learning.Lay abstractParental self-efficacy refers to parents’ beliefs in their ability to successfully parent their child. Parental self-efficacy plays an important role in family outcomes when a child has autism spectrum disorder. It is important to consider therapeutic self-efficacy, one’s feelings of self-efficacy regarding their implementation of an intervention, within parent-mediated interventions. The goal of this mixed methods study was to better understand factors that relate to parents’ therapeutic self-efficacy when using a telehealth-based parent-mediated intervention. Participants were 51 parents of children with autism spectrum disorder between 17 and 83 months old. Parents had generally high therapeutic self-efficacy, and global parental self-efficacy was significantly related therapeutic self-efficacy. Parents’ written reflections revealed four themes that related to their therapeutic self-efficacy: the importance of a good fit between the child’s skills and the intervention, the importance of a good fit between the parent’s interaction style and the intervention, environmental factors support intervention use, and the importance of the child’s response to the intervention. Several themes differed for parents with higher and lower therapeutic self-efficacy. Findings suggest that global parental self-efficacy plays an important role in parental therapeutic self-efficacy in parent-mediated interventions. To support parents in learning, coaches should ask about the child’s skills, parent’s interaction style, environmental challenges, and child’s response.
      Citation: Autism
      PubDate: 2020-11-28T05:07:49Z
      DOI: 10.1177/1362361320974233
       
  • Family navigation to increase evaluation for autism spectrum disorder in
           toddlers: Screening and Linkage to Services for Autism pragmatic
           randomized trial
    • Authors: Carolyn DiGuiseppi, Steven A Rosenberg, Margaret A Tomcho, Kathryn Colborn, Kristina Hightshoe, Silvia Gutiérrez-Raghunath, Jeanette M Cordova, Jodi K Dooling-Litfin, Cordelia Robinson Rosenberg
      Abstract: Autism, Ahead of Print.
      The Screening and Linkage to Services for Autism pragmatic trial examined the effect of family navigation on referral and evaluation for autism spectrum disorder in an urban healthcare system serving low-income families. Children aged 16–30 months with initial scores ⩾3 on the Modified Checklist for Autism in Toddlers–Revised with Follow-up (M-CHAT-R/F) were randomized to usual care (n = 133) or navigation if indicated (n = 142). Bilingual, bicultural autism family navigators offered navigation to intervention-group families if the completed M-CHAT-R/F indicated the need for autism spectrum disorder diagnostic evaluation. Autism family navigators also assisted families to arrange for completion of the M-CHAT-R/F interview if not done, and then offered navigation if indicated. Of 49 families for whom navigation was indicated, 45% received navigation, including care coordination, education, and practical support. In intention-to-treat analyses, the intervention did not increase referrals for evaluation but more than doubled completed autism spectrum disorder diagnostic evaluations. Intervention children were also more likely to complete the M-CHAT-R/F interview with fidelity. Research is needed to identify effective methods to improve uptake of family navigation. Family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder (ClinicalTrials.gov, https://clinicaltrials.gov/; NCT02374541).Lay abstractYoung children with autism spectrum disorder can benefit from early detection and intervention to moderate autism spectrum disorder’s effect on their development. Routine screening with standardized instruments facilitates early identification. However, many screen-positive children do not receive referrals for evaluation, complete diagnostic evaluations, or engage in services. This is especially true for children of color and those from less educated or low-income families. The Screening and Linkage to Services for Autism trial evaluated the effect of family navigation on referral and evaluation for autism spectrum disorder in screen-positive toddlers. The trial was conducted in an urban, low-income population. It was designed to test “real-world” implementation of family navigation. We randomly assigned 275 children aged 16–30 months with an initial positive autism spectrum disorder screen to receive navigation if indicated or usual care. Navigation increased the number of at-risk toddlers who were evaluated for autism spectrum disorder. It also improved the quality of autism spectrum disorder screening in primary care clinics. However, many children failed to receive indicated referrals for evaluation. Navigation did not improve referral rates. Furthermore, nearly half of families who were potentially eligible for navigation could not be contacted. Other ways of structuring the navigation program may be necessary to improve families’ access to and acceptance of navigation, especially in the setting of financial, cultural, and linguistic barriers. Our trial nevertheless showed that family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder.
      Citation: Autism
      PubDate: 2020-11-28T05:07:29Z
      DOI: 10.1177/1362361320974175
       
  • T-STAT for detecting autism spectrum disorder in toddlers aged
           18–24 months
    • Authors: Chin-Chin Wu, Chung-Hsin Chiang, Ching-Lin Chu, Lai-Sang Iao, Yuh-Ming Hou
      Abstract: Autism, Ahead of Print.
      Two studies were conducted to examine the use of the Taiwanese version of the Screening Tool for Autism in Two-Year-Olds for detecting autism spectrum disorder in toddlers aged 18–24 months. Study 1 used receiver operating characteristics to select a cutoff score for the Taiwanese version of the Screening Tool for Autism in Two-Year-Olds. It involved two groups of 16 toddlers each, one group with toddlers having autism spectrum disorder and the other group with chronological and mental age-matched toddlers with developmental delay. The result suggested that a cutoff of 2.50 would yield high sensitivity and specificity. In Study 2, we recruited 136 toddlers—30 with autism spectrum disorder, 33 with mild-autism spectrum disorder, and 73 with developmental delay. Using 2.50 as the cutoff score, the concurrent agreement between Taiwanese version of the Screening Tool for Autism in Two-Year-Olds risk and clinical diagnosis and Autism Diagnostic Observation Schedule yielded high sensitivity and specificity. The results of this study indicated that the Taiwanese version of the Screening Tool for Autism in Two-Year-Olds can be used as a Level 2 autism-specific screening tool for the 18–24 months age group.Lay abstractThe benefits of early intervention for young children with autism spectrum disorder highlight the importance of early diagnosis. Reliable diagnoses of autism spectrum disorder can be made before 24 months of age. However, many children are diagnosed with autism spectrum disorder at a later age. Delayed diagnosis can occur for children with less severe symptoms and lead to missed opportunities for early intervention. This current study was executed to examine the Taiwanese version of the Screening Tool for Autism in Two-Year-Olds in detecting autism spectrum disorder in toddlers between 18 and 24 months of age. One strength of this study was the inclusion of toddlers with autism spectrum disorder or mild-autism spectrum disorder using the strict and relaxed Diagnostic and Statistical Manual of Mental Disorders (5th ed.) criteria for autism spectrum disorder simultaneously. The results of this study supported that diagnosis of toddlers with autism spectrum disorder could be made reliable before 24 months of age. And the Taiwanese version of the Screening Tool for Autism in Two-Year-Olds was a Level 2 autism-specific screening tool for toddlers aged from 18 to 24 months in Taiwan.
      Citation: Autism
      PubDate: 2020-11-28T05:07:03Z
      DOI: 10.1177/1362361320972300
       
  • Short report: Development and utility of the Family-Centered Autism
           Navigation interview
    • Authors: Kris Pizur-Barnekow, Amy C Lang, Brian Barger
      Abstract: Autism, Ahead of Print.
      Navigating various systems, resources, and supports available for families of children with autism spectrum disorder is challenging. Family navigation is a potentially important support system for families of children with autism spectrum disorder. Family navigators are professionals who engage with families to enhance access to early identification and intervention services via shared navigation plans that help meet the family’s priorities and goals when navigating systems of support. Systematic processes and tools facilitating the development of a shared navigation plan with families following diagnosis are currently limited. This short report describes product development of the Family-Centered Autism Navigation using quality improvement methods including Lean Launch and qualitative methodology.Lay abstractWhen a parent learns of their child’s autism diagnosis, they may be overwhelmed, confused, and frustrated. Family navigation services are designed to improve access to care. While these services are a promising intervention to enhance well-being and developmental outcomes, there are limited tools that can systematically facilitate the development of a shared navigation plan that prioritizes the concerns of the family. The Family-Centered Autism Navigation semi-structured interview guide is designed for family navigators to triage and prioritize caregiver’s needs to coordinate and navigate systems of care after learning of their child’s autism spectrum disorder diagnosis. The goals of the Family-Centered Autism Navigation interview are to (1) identify family and child strengths; (2) identify family/caregiver concerns regarding navigation of services and systems following their child’s diagnosis of autism; (3) measure change in caregiver knowledge, ability and skill as it relates to understanding, remembering, and evaluating information they receive; and (4) assist with the development of a shared navigation plan. When using the Family-Centered Autism Navigation guide, family navigators and caregivers co-create a family-centered, prioritized action plan that supports and prepares caregivers as they navigate systems of care. This short report describes the development process of the Family-Centered Autism Navigation semi-structured interview guide. We utilized brief interviews (n = 42), expert feedback (n = 13), and quality improvement strategies (n = 2 family navigators) to develop the questions and determine the usability of the Family-Centered Autism Navigation interview in practice.
      Citation: Autism
      PubDate: 2020-11-26T05:25:38Z
      DOI: 10.1177/1362361320972890
       
  • Development and implementation of health care transition resources for
           youth with autism spectrum disorders within a primary care medical home
    • Authors: Jill F Harris, Leigh P Gorman, Aditi Doshi, Shannon Swope, Shayleigh D Page
      Abstract: Autism, Ahead of Print.
      Transition from pediatric to adult health care systems presents unique challenges for adolescents with autism spectrum disorder who often have complex medical and mental health needs. Without a coordinated transition plan, pediatric providers often continue to provide care to young adults with autism spectrum disorder beyond the scope of their medical training. Adult providers may be unwilling and untrained to accept care for young adults with autism spectrum disorder. This quality improvement study identified baseline transition-related practices within a pediatric medical home practice and developed a model to promote transition to adult heath care for patients with autism spectrum disorder. Participants were 251 patients with autism spectrum disorder aged 12–21 years. Baseline data revealed limited and inconsistent communication directed to patients and families regarding transition. An evidence-based and replicable transition checklist, templated documentation, and resources geared to patients aged 12–21 years were developed. While improvement was noted in number of visits addressing transition, medical providers skipped or deferred transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to defer to social work to address transition, and difficulty identifying adult providers with whom to collaborate regarding care needs.Lay abstractAs adolescents become adults, they typically change from seeing a pediatric health care provider to seeing a health care provider who specializes in working with adults. Adolescents with autism spectrum disorder may have more difficulty finding an adult health care provider who is trained to address the varied needs and medical and mental health issues that often are seen with autism spectrum disorder. Without careful planning for transition to adult health care, patients may continue to be seen by pediatric providers who may not be familiar with adult health needs. This quality improvement project focused on improving transition to adult health care by creating varied supports for the patient, family, and the health care team and putting them into action within a pediatric medical practice that serves over 250 adolescent and young adult patients with autism spectrum disorder. Before the supports were put into place, patients and families received limited and inconsistent communication to help them with transition. While the supports helped increase the amount and quality of help patients and families received, medical providers skipped or put off transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to have social workers discuss transition, and difficulty identifying adult health care providers for patients. This suggests more work is needed to both train and partner with patients, families, and health staff to promote smooth and positive health transitions.
      Citation: Autism
      PubDate: 2020-11-26T05:25:18Z
      DOI: 10.1177/1362361320974491
       
  • Evaluating the effects of a yoga-based program integrated with third-wave
           cognitive behavioral therapy components on self-regulation in children on
           the autism spectrum: A pilot randomized controlled trial
    • Authors: Radhika Tanksale, Kate Sofronoff, Jeanie Sheffield, John Gilmour
      Abstract: Autism, Ahead of Print.
      Research using mind–body practices in autism is limited but suggests a trend for ruminative reduction and improved behavioral–emotional outcomes. Following random assignment (N = 67), effects of a weekly six-session pilot yoga-based group program combined with third-wave cognitive behavioral therapy elements on self-regulation for children on the autism spectrum (aged 8–12 years) was assessed. The primary outcome was executive functions. Secondary outcomes were sleep, anxiety, and emotion awareness. After attrition, assessment results from participants in the intervention (n = 31) and the waitlist conditions (n = 30) completed at baseline, post-intervention, and 6-week follow-up were evaluated. For the intervention group, the between-group mean score differences suggest a decrease in parent-reported global executive difficulties from baseline to post-intervention (−2.61; 95% confidence interval −5.13 to −0.09, p = 0.047, d = −0.39) and baseline to follow-up (−4.17; 95% confidence interval −6.72 to −1.62, p = 0.017, d = −0.59) with small-to-medium effect sizes. Small-to-medium effects were found for a few parent-reported children’s sleep issues, child-reported aspects of emotion awareness, and performance anxiety. Non-significant findings are discussed in this article. Preliminary findings suggest mixed results and should be interpreted cautiously. The yoga-informed program may complement existing treatments and will benefit from ongoing evaluation.Lay abstractChildren on the autism spectrum may experience difficulties with the regulation of attention, thoughts, emotions, and behavior, understanding, and expressing their emotions appropriately, as well as anxiety, and sleep. In autism research, contemplative practices that work through both body and mind have shown tentatively promising results. However, there are limited studies on this topic, and the use of yoga to facilitate executive control has not been researched yet. The Incredible Explorers (6-week program), a yoga-informed intervention program for children (8–12 years), was developed to understand whether, for children on the autism spectrum, the training could improve the ability to self-regulate, reduce anxiety and sleep problems, and increase awareness of emotions. In our sample, 61 children with one of their parents completed the program. Half of the group received the intervention, and the other half had to wait until the yoga group completed their trial. The participants were asked to give their feedback immediately after program completion and at 6-week follow-up. Compared to the group that was waiting to receive the intervention, parents in the yoga group reported significant gains for their children in regulating their overall executive control immediately after the session and again at follow-up. The parents reported a reduction in some of the sleep problems post-treatment. Children indicated an improved ability to communicate their feelings and willingness to analyze their emotions post-intervention. However, the study had several shortcomings and given that this was the first trial of the program, the results need to be interpreted with caution. Further research is recommended.
      Citation: Autism
      PubDate: 2020-11-26T05:24:38Z
      DOI: 10.1177/1362361320974841
       
  • Age at autism spectrum disorder diagnosis: A systematic review and
           meta-analysis from 2012 to 2019
    • Authors: Maarten van ’t Hof, Chanel Tisseur, Ina van Berckelear-Onnes, Annemyn van Nieuwenhuyzen, Amy M Daniels, Mathijs Deen, Hans W Hoek, Wietske A Ester
      Abstract: Autism, Ahead of Print.
      Between 1990 and 2012, the global mean age at diagnosis of autism spectrum disorder ranged from 38 to 120 months. Measures have since been introduced to reduce the age at autism spectrum disorder diagnosis, but the current global mean age is unknown. This review and meta-analysis report the average age at diagnosis from studies published between 2012 and 2019. We initially identified 1150 articles, including 56 studies that reported the mean or median age at diagnosis across 40 countries (n = 120,540 individuals with autism spectrum disorder). Meta-analysis results (on 35 studies, including 55 cohorts from 35 countries, n = 66,966 individuals with autism spectrum disorder) found a current mean age at diagnosis of 60.48 months (range: 30.90–234.57 months). The subgroup analysis for studies that only included children aged ⩽10 years (nine studies, including 26 cohorts from 23 countries, n = 18,134 children with autism spectrum disorder) showed a mean age at diagnosis of 43.18 months (range: 30.90–74.70 months). Numerous factors may influence age at diagnosis and were reported by 46 studies, often with conflicting or inconclusive findings. Our study is the first to ascertain the global average age at autism spectrum disorder diagnosis from a meta-analysis. Continued efforts to lower the average age at autism spectrum disorder diagnosis are needed.Lay abstractWe currently assume that the global mean age at diagnosis of autism spectrum disorder ranges from 38 to 120 months. However, this range is based on studies from 1991 to 2012 and measures have since been introduced to reduce the age at autism spectrum disorder diagnosis. We performed a systematic review and meta-analysis (statistical analysis that combines the results of multiple scientific studies) for studies published between 2012 and 2019 to evaluate the current age at autism spectrum disorder diagnosis. We included 56 studies that reported the age at diagnosis for 40 countries (containing 120,540 individuals with autism spectrum disorder). Results showed the current mean age at diagnosis to be 60.48 months (range: 30.90–234.57 months) and 43.18 months (range: 30.90–74.70 months) for studies that only included children aged ⩽10 years. Numerous factors that may influence age at diagnosis (e.g. type of autism spectrum disorder diagnosis, additional diagnoses and gender) were reported by 46 studies, often with conflicting or inconclusive results. Our study is the first to determine the global average age at autism spectrum disorder diagnosis from a meta-analysis. Although progress is being made in the earlier detection of autism spectrum disorder, it requires our constant attention.
      Citation: Autism
      PubDate: 2020-11-20T05:56:12Z
      DOI: 10.1177/1362361320971107
       
  • Insomnia subtypes and clinical impairment in hospitalized children with
           autism spectrum disorder
    • Authors: Briana J Taylor, Charles F Reynolds, Matthew Siegel
      Abstract: Autism, Ahead of Print.
      Insomnia subtypes have not been characterized in severely affected youth with autism spectrum disorder. We examined indices of clinical impairment (i.e. length of hospital stay, autism severity, nonverbal intelligence quotient, and adaptive and maladaptive behaviors) across insomnia subtypes in 427 psychiatrically hospitalized children with autism spectrum disorder (mean age = 12.8 ± 3.4; 81.3% male). Multivariate analysis with Bonferroni adjustment tested for differences in clinical impairment across insomnia subtypes adjusting for age and sex. Per parent report, 60% (n = 257) of children had at least one form of insomnia. The distribution of subtypes was sleep onset (26.1%, n = 67), sleep maintenance (24.9%, n = 64), early morning waking (4.3%, n = 11), and combined (44.7%, n = 115). There was a significant multivariate effect of insomnia subtypes on clinical impairment (Pillai’s Trace = 0.25, F = 2.78, p < 0.001). Sleep maintenance and early morning waking were associated with longer hospital stays. Early morning waking was also associated with greater autism symptom severity. In general, children with sleep-maintenance or combined insomnias scored lower on adaptive behaviors and higher on maladaptive behaviors. Sleep-maintenance and combined insomnias appear to be more indicative of or consequential for impaired behavioral functioning.Lay abstractInsomnia subtypes are not well understood in the most severely affected children with autism spectrum disorder. We examined length of hospital stay, autism severity, nonverbal intelligence quotient, and behavioral functioning across insomnia subtypes in 427 psychiatrically hospitalized children with autism spectrum disorder (mean age = 12.8 ± 3.4; 81.3% male). Per parent report, 60% (n = 257) of children had at least one type of insomnia. The distribution of subtypes was difficulty falling asleep (26.1%, n = 67), difficulty staying asleep (24.9%, n = 64), early morning awakening (4.3%, n = 11), and multiple insomnia symptoms (44.7%, n = 115). Difficulty staying asleep and early morning awakenings were associated with longer hospital stays. Early morning awakening was also associated with higher autism symptom severity. In general, children with difficulty staying asleep or multiple insomnia symptoms scored lower on adaptive behaviors (e.g. communication, self-care, socialization) and higher on maladaptive behaviors (e.g. irritability, hyperactivity, emotional reactivity, and emotional dysphoria). Difficulty staying asleep or having multiple insomnia symptoms appears to be most strongly related to impaired behavioral functioning. Conversely, early morning awakenings may be more closely tied with autism spectrum disorder itself. Further research is needed regarding insomnia subtypes at the severe end of the autism spectrum.
      Citation: Autism
      PubDate: 2020-10-27T05:02:45Z
      DOI: 10.1177/1362361320967524
       
  • Psychometric testing of a set of patient-reported instruments to assess
           healthcare interventions for autistic adults
    • Authors: Christina Nicolaidis, Kelly Y Zhen, Junghee Lee, Dora M Raymaker, Steven K Kapp, Lisa A Croen, Anna Urbanowicz, Joelle Maslak, Mirah Scharer
      Abstract: Autism, Ahead of Print.
      There is a growing recognition of the need for interventions to improve the healthcare of autistic adults. However, there is a dearth of validated measures to evaluate such interventions. Our objectives were to use a community-based participatory research approach to create an accessible set of patient- and proxy-reported instruments to measure healthcare outcomes and potential intervention targets in autistic adults and to assess the instruments’ psychometric characteristics, including content validity, construct validity, and internal consistency reliability. We administered a survey to 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (194 participating directly and 50 participating via a proxy reporter). Community partners ensured items were easy to understand and captured the intended construct. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Visit Preparedness Scale, Healthcare Accommodations Scale, and Patient–Provider Communication Scale were each found to have a single factor. The AASPIRE Health and Healthcare Self-Efficacy Scale had two factors: Individual Healthcare Self-Efficacy and Relationship-Dependent Healthcare Self-Efficacy. Both patient- and proxy-reported versions of all scales had good to excellent internal consistency reliability, with alphas ranging from 0.81 to 0.96. The scales were associated with the Barriers to Healthcare Checklist and the Unmet Healthcare Needs Checklist in the hypothesized directions.Lay Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient–provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults.
      Citation: Autism
      PubDate: 2020-10-26T06:30:13Z
      DOI: 10.1177/1362361320967178
       
  • Physical activity participation among adolescents with autism spectrum
           disorder
    • Authors: Patrick Jachyra, Rebecca Renwick, Brenda Gladstone, Evdokia Anagnostou, Barbara E Gibson
      Abstract: Autism, Ahead of Print.
      Adolescents with autism spectrum disorder are less physically active compared with their age-related peers. Despite the many benefits of physical activity, little is known about why they are predominantly inactive. To date, research has rarely included adolescent’s perspectives, and little is known about how wider social, systemic, and policy forces shape physical activity. The purpose of this study was to explore the perceptions, meanings, and role of physical activity in the lives of adolescents with autism spectrum disorder, and draw on their experiences to examine how social and cultural processes shaped their participation. Ten adolescent boys with autism spectrum disorder created individual digital stories, and participated in two interviews. Thematic analysis was informed by a critical social science approach. The results highlight that bullying, challenges in community programs, and the prioritization of therapeutic interventions limited participation. Participation was maximized when physical activity generated meaning, purpose, a sense of identity, and affective pleasures. The study findings illuminate the complexity of physical activity participation which has not previously been described in the literature. The findings suggest potential value in promoting the affective pleasures of movement, along with facilitating social and systemic pathways to enhance physical activity participation.Lay abstractAdolescents with autism spectrum disorder are less likely to be physically active compared to their age-related peers. Despite the lower levels of physical activity observed among adolescents with autism spectrum disorder, it is unknown why they are predominantly inactive. Much of the research so far has focused on understanding how biological aspects influence physical activity participation. But there is little research that has examined how social and cultural components influence their physical activity participation. There is also little research that has sought the perspectives and experiences of adolescents with autism spectrum disorder. In this study, 10 adolescent boys with autism spectrum disorder created a digital story, and also participated in two face-to-face interviews. The purpose of the study was to examine how individual, social, and cultural forces influenced physical activity participation. Analysis of the data highlight that bullying, challenges in community programs, and the prioritization of therapeutic interventions limited participation. On the contrary, participants were more likely to be active when physical activity generated meaning, purpose, a sense of identity, and affective pleasures. The findings add new knowledge suggesting that adolescents with autism spectrum disorder are not simply unmotivated. Rather, physical activity participation was shaped by wider social experiences, norms, values, and practices in which they were immersed. The findings suggest a need for directed efforts to create policies and practices which are individualized and reflective of the needs and abilities of adolescents with autism spectrum disorder to promote physical activity participation and potentially enhance physical health and wellbeing.
      Citation: Autism
      PubDate: 2020-09-14T07:45:22Z
      DOI: 10.1177/1362361320949344
       
  • Increased prevalence of non-communicable physical health conditions among
           autistic adults
    • Authors: Elizabeth Weir, Carrie Allison, Varun Warrier, Simon Baron-Cohen
      Abstract: Autism, Ahead of Print.
      Autistic individuals may be at risk of premature mortality, and physical health comorbidity increases this risk; however, most studies fail to include older autistic adults or consider lifestyle-related factors that affect health. We developed an anonymous, online physical health survey. The final sample included n = 2368 individuals (mean age = 41.42), and of these, n = 1156 were autistic individuals (mean age = 40.98). We utilized three sex-stratified statistical models to determine the prevalence of cancer, cardiovascular conditions, respiratory conditions, and diabetes. All three models indicate that autistic females are more likely to have cardiovascular conditions, respiratory conditions, asthma, low blood pressure, arrhythmias, and prediabetes than non-autistic females, and autistic males are more likely to have arrhythmias than non-autistic males; these results suggest that autistic individuals carry increased risks for these conditions when compared to the general population, even after controlling for age, ethnicity, education level, body mass index, smoking, and alcohol use. Further, these risks may differ depending on biological sex for autistic individuals. Autistic adults, and particularly autistic females, have greater and wider-ranging risks than previously thought, even after controlling for demographic and lifestyle-related factors. Although this is a large sample of autistic adults across the lifespan, future research should employ larger, population-based samples to confirm these findings.Lay abstractPrevious research indicates autistic individuals die at a younger age than others and that this is possibly due in part to chronic physical health conditions. The present study used an anonymous, online survey to determine how common certain physical health conditions are among autistic adults, compared with non-autistic adults. We found autistic adults are more likely to develop heart conditions, lung conditions, and diabetes than non-autistic adults. Autistic females may be at higher risk of developing certain conditions (including respiratory conditions, asthma, and prediabetes) than autistic males. Finally, autistic individuals have increased health risks even when considering lifestyle factors (such as smoking, alcohol, and body mass index). This is still a relatively small study, and future research needs to confirm these findings and identify why these risks exist.
      Citation: Autism
      PubDate: 2020-09-10T06:16:14Z
      DOI: 10.1177/1362361320953652
       
  • Neurological disorders in autism: A systematic review and meta-analysis
    • Authors: Pei-Yin Pan, Sven Bölte, Preet Kaur, Sadia Jamil, Ulf Jonsson
      Abstract: Autism, Ahead of Print.
      The etiological significance of neurological disorders in autism is debated, but it is clear that they complicate support provision and clinical management, and can have negative impact on outcomes. This systematic review and meta-analysis explored the full range of co-occurring neurological disorders in autism. We estimated the odds of having neurological complications compared to the general population and other neurodevelopmental conditions, as well as the overall prevalence of different neurological disorders. Seventy-nine articles were eligible for the systematic review, including 28 case-control studies, 43 prevalence studies, and 8 cohort studies. Findings were heterogeneous across studies. Overall, autistic individuals were significantly more likely than the general population to exhibit epilepsy, macrocephaly, hydrocephalus, cerebral palsy, migraine/headache, and congenital abnormalities of the nervous system, with prevalence estimates ranging from 1.1% (0%–3.3%; hydrocephalus) to 14.2% (11.3%–17.2%; epilepsy). Epilepsy was also more common in autism than in attention-deficit/hyperactivity disorder (odds ratio [95% confidence interval] = 4.06 [2.81–5.88]). Findings indicate that awareness of neurological disorders and neurological check-ups are indicated in autism to ensure adequate physical health care and support. Prospective studies of neurological disorders in children diagnosed with or at risk of autism might further enhance our understanding of causal pathways.Lay abstractNeurological disorders, such as epilepsy and cerebral palsy, have been reported to occur among individuals with autism beyond chance and may have an impact on daily living across the lifespan. Although there has been research investigating neurological disorders in autism, the findings are not always conclusive. Previous summaries of existing studies have not evaluated the full range of neurological disorders. This study aimed to comprehensively explore the neurological problems appearing in autism to provide updated information that is needed for better healthcare and support in this population. We looked at already published studies focusing on risk or frequency of neurological disorders in autism. Our results suggest that individuals with autism are more likely than the general population to have a range of neurological disorders, including epilepsy, macrocephaly, hydrocephalus, cerebral palsy, migraine/headache, and inborn abnormalities of the nervous system. In order to provide individualized healthcare and support of high quality to individuals diagnosed with autism, health care professionals and other support providers need to be attentive to neurological complications. To further improve our understanding about the link between autism and neurological disorders, future research should follow the neurological health of children who are diagnosed with or are at increased likelihood of autism.
      Citation: Autism
      PubDate: 2020-09-10T06:15:15Z
      DOI: 10.1177/1362361320951370
       
  • Development and psychometric testing of the AASPIRE Adult Autism
           Healthcare Provider Self-Efficacy Scale
    • Authors: Christina Nicolaidis, Gavin Schnider, Junghee Lee, Dora M Raymaker, Steven K Kapp, Lisa A Croen, Anna Urbanowicz, Joelle Maslak
      Abstract: Autism, Ahead of Print.
      Our objective was to develop a measure of healthcare providers’ self-efficacy in providing healthcare to autistic adults and to better understand their training needs. We used a community-based participatory research approach with academic researchers, autistic adults, supporters, and healthcare providers. We developed a one-page questionnaire which included the new 6-item self-efficacy scale, two items on how challenging and rewarding it is to provide care to autistic adults, and seven items on provider characteristics. We surveyed 143 healthcare providers from eight primary care clinics in Oregon and California, United States. Preliminary psychometric testing found the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Adult Autism Healthcare Provider Self-Efficacy Scale to have good internal consistency reliability (Cronbach’s alpha 0.87) and consist of a single factor. A priori hypothesis testing found correlations in the expected directions. Only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients and identify and make accommodations.Lay abstractThe adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers’ confidence (or “self-efficacy”) in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers’ training needs most effectively.
      Citation: Autism
      PubDate: 2020-08-29T06:33:35Z
      DOI: 10.1177/1362361320949734
       
  • Telehealth cognitive behavioral therapy for insomnia in children with
           autism spectrum disorder: A pilot examining feasibility, satisfaction, and
           preliminary findings
    • Authors: Christina S McCrae, Wai Sze Chan, Ashley F Curtis, Neetu Nair, Chelsea B Deroche, Melissa Munoz, Stephanie Takamatsu, Deija McLean, Mattina Davenport, Julie E Muckerman, Nicole Takahashi, Dillon McCann, Kevin McGovney, Pradeep Sahota, Micah O Mazurek
      Abstract: Autism, Ahead of Print.
      Insomnia is common in children with autism. Cognitive behavioral treatment for childhood insomnia may improve sleep and functioning in children with autism and their parents, but delivery involving multiple office visits limits accessibility. This single-arm pilot study tested telehealth delivery of eight-session cognitive behavioral treatment for childhood insomnia in 17 children (6–12 years) with autism spectrum disorder and insomnia and their parent(s). Treatment integrity was assessed each session (delivery, by therapist; receipt, participant understanding; and enactment, home practice). Treatment satisfaction was assessed after treatment. Children and parents wore actigraphs and completed electronic diaries for 2 weeks, children completed 5-min Holter Monitoring (assessed heart rate variability, physiological arousal indicator), and parents completed Aberrant Behavior Checklist before and after 1 month. Average integrity scores were high (98%, delivery; 93%, receipt; and 82%, enactment). Parents found cognitive behavioral treatment for childhood insomnia helpful, age-appropriate, and autism-friendly. Paired-samples t-tests (family-wise error controlled) indicated telehealth cognitive behavioral treatment for childhood insomnia improved child and parent sleep (objective and subjective) and functioning (child—decreased irritability, lethargy, stereotypy, hyperactivity; parent—decreased fatigue). At 1 month, inappropriate speech also decreased, but hyperactivity was no longer decreased. Other gains were maintained. Most children demonstrated reduced arousal following treatment. This pilot shows telehealth cognitive behavioral treatment for childhood insomnia is feasible and may improve child and parent sleep, child behavior and arousal, and parent fatigue. A randomized controlled trial of telehealth cognitive behavioral treatment for childhood insomnia for children with autism is needed.Lay abstractInsomnia is common in children with autism. Cognitive behavioral treatment for childhood insomnia (CBT-CI) may improve sleep and functioning in children with autism and their parents, but typical delivery involving multiple office visits can make it difficult for some children to get this treatment. This pilot study tested telehealth delivery of CBT-CI using computers, which allowed children and their parents to get the treatment at home. This pilot shows therapists that parents and children were able to use telehealth CBT-CI to improve child and parent sleep, child behavior and arousal, and parent fatigue. Parents found telehealth CBT-CI helpful, age-appropriate, and autism-friendly. Telehealth CBT-CI holds promise for treating insomnia in school-aged children with autism and deserves further testing.
      Citation: Autism
      PubDate: 2020-08-25T08:32:46Z
      DOI: 10.1177/1362361320949078
       
  • Epilepsy in adulthood: Prevalence, incidence, and associated antiepileptic
           drug use in autistic adults in a state Medicaid system
    • Authors: Lauren Bishop, Kiley J McLean, Eric Rubenstein
      Abstract: Autism, Ahead of Print.
      Although epilepsy commonly presents with autism in children, it is currently unknown whether established estimates represent the prevalence and incidence of epilepsy in autistic adults. Our objective was to use population-level Medicaid data to determine prevalence, incidence, and antiepileptic drug use associated with epilepsy in a unique population of autistic adults aged 21+ with (N = 2738) and without (N = 4775) intellectual disability and to compare results to adults with intellectual disability alone (N = 18,429). We found that 34.6% of autistic adults with intellectual disability and 11.1% of autistic adults without intellectual disability had epilepsy, compared to 27.0% of adults with intellectual disability alone. New incidence of epilepsy was 23.6 incident cases per 1000 person years (95% confidence interval: 21.3, 26.2) in autistic adults with intellectual disability, 7.7 incident cases per 1000 person years (95% confidence interval: 6.6, 8.9) in autistic adults without intellectual disability, and 15.9 incident cases per 1000 person years (95% confidence interval: 15.2, 16.7) in adults with intellectual disability alone. Female sex and intellectual disability were associated with increased risk of prevalent and incident epilepsy in autistic adults. Findings underscore the importance of treating prevalent epilepsy and screening and preventing incident epilepsy in autistic adults as they age.Lay abstractEpilepsy is more common in autistic children compared to children without autism, but we do not have good estimates of how many autistic adults have epilepsy. We used data from a full population of 7513 autistic adults who received Medicaid in Wisconsin to figure out the proportion of autistic adults who have epilepsy, as compared to 18,429 adults with intellectual disability. We also wanted to assess how often epilepsy is first diagnosed in adulthood. Finally, we wanted to see whether antiepileptic drugs are being used to treat epilepsy in autistic adults. We found that 34.6% of autistic adults with intellectual disability and 11.1% of autistic adults without intellectual disability had epilepsy, compared to 27.0% of adults with intellectual disability alone. Autistic women and autistic adults with intellectual disability were more likely than autistic men and autistic adults without intellectual disability to have both previous and new diagnoses of epilepsy. Finally, we found that antiepileptic medications are commonly prescribed to autistic people who do not have epilepsy potentially to treat mental health conditions or behavior problems, and that antiepileptic medications are not always prescribed to autistic people with epilepsy even though they are indicated as a first-line epilepsy treatment. The findings of this study highlight the need to effectively treat and prevent epilepsy in autistic adults.
      Citation: Autism
      PubDate: 2020-08-06T04:51:44Z
      DOI: 10.1177/1362361320942982
       
  • Increased emotional eating behaviors in children with autism: Sex
           differences and links with dietary variety
    • Authors: Gregory L Wallace, Emily Richard, Alexandra Wolff, Monica Nadeau, Nancy Zucker
      Abstract: Autism, Ahead of Print.
      Although food selectivity and so-called “picky” eating are well documented in autism spectrum disorder, emotion-linked eating has rarely been investigated. This study examined emotion-linked over- and under-eating based on parent ratings of these behaviors in 4- to 17-year-old children with autism spectrum disorder (n = 190) as compared to same-age typically developing children (n = 119). Children with autism spectrum disorder were rated as exhibiting both more emotional over-eating and more emotional under-eating behaviors than their typically developing peers. Furthermore, while sex differences in these emotional eating behaviors were not observed in the typically developing children, girls with autism spectrum disorder were rated as experiencing more emotional over-eating behaviors than boys with autism spectrum disorder. Finally, among all children with autism spectrum disorder, emotional over-eating was linked with increased consumption of sweet foods and decreased consumption of vegetables. These findings have implications for better understanding eating habits in children with autism spectrum disorder and suggest that emotional eating behaviors might have both immediate and downstream health impacts.Lay abstractAlthough “picky” eating is well documented in autism spectrum disorder, emotional eating has rarely been investigated. This study examined emotional over- and under-eating based on parent ratings of these behaviors in 4- to 17-year-old children with autism spectrum disorder (n = 190) as compared to same-age typically developing children (n = 119). Children with autism spectrum disorder were rated as exhibiting both more emotional over-eating and more emotional under-eating behaviors than their typically developing peers. Furthermore, while sex differences in these emotional eating behaviors were not observed in the typically developing children, girls with autism spectrum disorder were rated as experiencing more emotional over-eating behaviors than boys with autism spectrum disorder. Finally, among all children with autism spectrum disorder, emotional over-eating was linked with increased consumption of sweet foods and decreased consumption of vegetables. These findings have implications for better understanding eating habits in children with autism spectrum disorder and suggest that emotional eating behaviors might have both immediate and downstream health impacts.
      Citation: Autism
      PubDate: 2020-08-01T08:14:08Z
      DOI: 10.1177/1362361320942087
       
  • Vision care among school-aged children with autism spectrum disorder in
           North America: Findings from the Autism Treatment Network Registry
           Call-Back Study
    • Authors: Olivia J Lindly, James Chan, Rachel M Fenning, Justin G Farmer, Ann M Neumeyer, Paul Wang, Mark Swanson, Robert A Parker, Karen A Kuhlthau
      Abstract: Autism, Ahead of Print.
      Children with autism spectrum disorder have a high risk of vision problems yet little is known about their vision care. This cross-sectional survey study, therefore, examined vision care among 351 children with autism spectrum disorder ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Vision care variables were vision tested with pictures, shapes, or letters in the past 2 years; vision tested by an eye care practitioner (e.g. ophthalmologist, optometrist) in the past 2 years; prescribed corrective eyeglasses; and wore eyeglasses as recommended. Covariates included sociodemographic, child functioning, and family functioning variables. Multivariable models were fit for each vision care variable. Though 78% of children with autism spectrum disorder had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism spectrum disorder prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Multivariable analysis results demonstrated statistically significant differences in vision care among children with autism spectrum disorder by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism spectrum disorder do not receive recommended vision care and highlight potentially modifiable disparities in vision care.Lay Children with autism are at high risk for vision problems, which may compound core social and behavioral symptoms if untreated. Despite recommendations for school-aged children with autism to receive routine vision testing by an eye care practitioner (ophthalmologist or optometrist), little is known about their vision care. This study, therefore, examined vision care among 351 children with autism ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Parents were surveyed using the following vision care measures: (1) child’s vision was tested with pictures, shapes, or letters in the past 2 years; (2) child’s vision was tested by an eye care practitioner in the past 2 years; (3) child was prescribed corrective eyeglasses; and (4) child wore eyeglasses as recommended. Sociodemographic characteristics such as parent education level, child functioning characteristics such as child communication abilities, and family functioning characteristics such as caregiver strain were also assessed in relationship to vision care. Although 78% of children with autism had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Differences in vision care were additionally found among children with autism by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism do not receive recommended vision care and highlight potentially modifiable disparities in vision care.
      Citation: Autism
      PubDate: 2020-07-22T04:48:55Z
      DOI: 10.1177/1362361320942091
       
  • Using phecode analysis to characterize co-occurring medical conditions in
           autism spectrum disorder
    • Authors: Michelle D Failla, Kyle L Schwartz, Shikha Chaganti, Laurie E Cutting, Bennett A Landman, Carissa J Cascio
      Abstract: Autism, Ahead of Print.
      Individuals with autism spectrum disorder experience a significant number of co-occurring medical conditions, yet little is known about these conditions beyond prevalence. Using large-scale de-identified medical records, we can use a novel phecode-based tool to characterize co-occurring conditions in autism spectrum disorder. We hypothesized that individuals with autism spectrum disorder experience an increased burden of co-occurring conditions as measured by presence, frequency, and duration of visits related to co-occurring conditions. Secondarily, we hypothesized that age at first encounter for autism spectrum disorder (early, 5) would be associated with different co-occurring conditions. The International Classification of Diseases, Ninth Revision, codes were extracted from a large anonymized electronic medical center database for 3097 individuals with autism spectrum disorder and 3097 matched controls. Co-occurring conditions were characterized using a novel tool (pyPheWAS) to examine presence, frequency, and duration of each condition. We identified several categories of co-occurring conditions in autism spectrum disorder: neurological (convulsions, sleep disorders); psychiatric (anxiety disorders, adjustment/conduct disorders), as well as constipation, hearing loss, and developmental delays. Our work confirms individuals with autism spectrum disorder are under a significant medical burden, with increased duration and frequency of visits associated with co-occurring conditions. Adequate management of these conditions could improve quality of life for individuals with autism spectrum disorder.Lay abstractPeople with autism spectrum disorder often have a number of other medical conditions in addition to autism. These can range from constipation to epilepsy. This study uses medical record data to understand how frequently and how long people with autism have to be seen by a medical professional for these other medical conditions. This study confirmed that people with autism often have a number of other medical conditions and that they have to go see a medical professional about those conditions often. We also looked to see if children diagnosed with autism after age 5 years might have different medical conditions compared to children diagnosed earlier. Children diagnosed later had more conditions like asthma, hearing loss, and mood disorders. This work describes how much medical care people with autism get for different medical conditions and the burden of seeking additional medical care for people with autism and their families.
      Citation: Autism
      PubDate: 2020-07-14T11:57:49Z
      DOI: 10.1177/1362361320934561
       
  • Healthcare service utilization and cost among transition-age youth with
           autism spectrum disorder and other special healthcare needs
    • Authors: Jennifer L Ames, Maria L Massolo, Meghan N Davignon, Yinge Qian, Lisa A Croen
      Abstract: Autism, Ahead of Print.
      Youth with autism spectrum disorder often have complex medical needs. Disruptions of healthcare during the transition from pediatric to adult healthcare may put youth with autism spectrum disorder at higher risk of medical emergencies and high medical costs. We conducted a study among transition-age youth (14–25 years old) receiving healthcare at Kaiser Permanente Northern California during 2014–2015. We examined the differences in healthcare utilization and costs among youth with autism spectrum disorder (n = 4123), attention deficit and hyperactivity disorder (n = 20,6015), diabetes mellitus (n = 2156), and general population controls (n = 20,615). Analyses were also stratified by age and sex. Youth with autism spectrum disorder had the highest utilization of outpatient primary care, mental health, and psychotropic medications and the lowest utilization of obstetrics/gynecology and urgent care. Costs for youth with autism spectrum disorder were higher than those for attention deficit and hyperactivity disorder and general population peers and lower than for diabetes mellitus. Utilization patterns varied by age. Transition-age youth with autism spectrum disorder generally utilize healthcare at higher rates relative to attention deficit and hyperactivity disorder and general population peers but at similar or lower rates than diabetes mellitus peers, indicating this group’s complex combination of psychiatric and medical healthcare needs. The relatively high utilization of psychiatric services and low utilization of women’s health services in transition-age youth with autism spectrum disorder may have implications for long-term health and warrants additional research.Lay abstractYouth with autism spectrum disorder often have complex medical needs. Disruptions of healthcare during the transition from pediatric to adult healthcare may put youth with autism spectrum disorder at higher risk of medical emergencies and high medical costs. To understand healthcare utilization during the transition years, we conducted a study among transition-age youth (14–25 years old) receiving healthcare at Kaiser Permanente Northern California during 2014–2015. We examined differences in healthcare utilization and costs among youth with autism spectrum disorder (n = 4123), attention deficit and hyperactivity disorder (n = 20,6015), diabetes mellitus (n = 2156), and general population controls (n = 20,615). Analyses were also stratified by age and sex. Youth with autism spectrum disorder had the highest utilization of outpatient primary care, mental health, and psychotropic medications and the lowest utilization of obstetrics/gynecology and urgent care. Costs for youth with autism spectrum disorder were higher than those for attention deficit and hyperactivity disorder and general population peers and lower than for diabetes mellitus. Healthcare utilization patterns varied by age. Transition-age youth with autism spectrum disorder generally used healthcare at higher rates relative to attention deficit and hyperactivity disorder and general population peers but at similar or lower rates than diabetes mellitus peers, indicating this group’s complex combination of psychiatric and medical healthcare needs. The relatively high utilization of psychiatric services and low utilization of women’s health services in transition-age youth with autism spectrum disorder may have implications for long-term health and warrants additional research.
      Citation: Autism
      PubDate: 2020-06-25T10:55:29Z
      DOI: 10.1177/1362361320931268
       
  • A grounded theory of adoption and maintenance of physical activity among
           autistic adults
    • Authors: Andrew M Colombo-Dougovito, A Josephine Blagrave, Sean Healy
      Abstract: Autism, Ahead of Print.
      Background:Although a growing body of literature has explored the physical activity experiences from the perspective of children on the autism spectrum, the perspective of autistic adults remains largely unheard. Due to this absence of perspective, there exists limited knowledge of the appropriateness and generalizability of current models and theories of physical activity for this population.Methods:A constructivist grounded theory study was conducted to explore the experiences of adoption and maintenance of physical activity from the direct perspective of autistic adults. Autistic adults (n = 23) from the United States and the United Kingdom were recruited.Results:A total of 29 codes emerged from the coding process. These codes were formed into four broad categories: (1) individual attributes; (2) environmental factors; (3) social relationships; and (4) social experiences. The interconnectedness of these four categories was explored.Conclusions:The findings and presented model highlight the importance of building successful experiences for young children on the autism spectrum, so that they are more likely to continue physical activity into their adult life. Furthermore, findings emphasize the importance of creating noncompetitive, sensory-friendly physical activity experiences for autistic adults that offer flexibility in social engagement.Lay abstractLittle is known about how autistic adults experience physical activity. To begin to change this, we interviewed 23 autistic adults from the United State and the United Kingdom about their past and current experiences of physical activity participation. The interviewees told us about how their physical activity experiences were highly influenced by their individual strengths, the setting in which the activity took place, the presence of people to support their physical activities, and the sensory experiences they had while in physical activity. Through these interviews, we were able to create a model that represented the physical activity experiences discussed. Based on the model that emerged from this study, we recommend physical activity opportunities are made available that are noncompetitive, sensory-friendly, and that allow for participants to socialize as they prefer.
      Citation: Autism
      PubDate: 2020-06-24T01:06:00Z
      DOI: 10.1177/1362361320932444
       
  • The health of college students on the autism spectrum as compared to their
           neurotypical peers
    • Authors: Jane D McLeod, Amelia Hawbaker, Emily Meanwell
      Abstract: Autism, Ahead of Print.
      Data from an online survey of undergraduate students at 14 colleges and universities were used to estimate the association of autism with six physical and mental health outcomes, accounting for comorbidity with other disabilities (learning disability, attention deficit hyperactivity disorder, sensory impairment, mobility impairment, mental health disorder, or other disabilities). Autism status was determined based on registration for disability accommodations based on autism and/or self-reports of an autism diagnosis. Health outcomes included self-rated physical health, self-rated mental health, depressive symptoms, symptoms of anxiety, sleep deprivation, and binge drinking. Students with autism reported poorer self-rated physical and mental health, more depressive symptoms, and more symptoms of anxiety than other students, even in the presence of controls for other disabilities. Students with autism also reported a lower likelihood of sleep deprivation and binge drinking than other students. Our results extend previous research on the health correlates of autism by considering additional indicators of health and by incorporating a direct comparison to neurotypical students. They encourage consideration of how health services for students with autism can be improved, especially for mental health problems, and argue for integrated support services that address the full constellation of physical and mental health challenges that students on the spectrum experience.Lay abstractStudies have shown that children and older adults on the autism spectrum experience more physical and mental health problems than their neurotypical peers. Less is known about the physical and mental health of college students on the spectrum. Studying college students is important because young adults on the spectrum are enrolling in college at increasing rates and because health problems can be a barrier to succeeding in college. We collected data from 2820 students at 14 colleges and universities using an online survey, some of whom had registered for accommodations based on autism and others of whom had not. We used the data to compare the physical and mental health of students on the spectrum to their neurotypical peers. Because students with autism often report other disabilities that also affect health, we accounted for whether they experienced a learning disability, attention deficit hyperactivity disorder, sensory impairment, mobility impairment, mental health disorder, or any other disabilities. We assessed health using self-reports of how healthy they were physically and mentally, and reports of depressive symptoms, symptoms of anxiety, sleep deprivation, and binge drinking. We found that students with autism reported poorer physical and mental health, more depressive symptoms, and more symptoms of anxiety even after taking into account other disabilities they may have experienced. They were also less likely to report sleep deprivation and binge drinking. Our results argue for developing specialized services to address the physical and mental health challenges of college students on the spectrum.
      Citation: Autism
      PubDate: 2020-06-18T12:00:52Z
      DOI: 10.1177/1362361320926070
       
  • Transitioning youth with autism spectrum disorders and other special
           health care needs into adult primary care: A provider survey
    • Authors: Jennifer L Ames, Maria L Massolo, Meghan N Davignon, Yinge Qian, Hilda J Cerros, Lisa A Croen
      Abstract: Autism, Ahead of Print.
      Health care continuity during the transition from pediatric to adult care is critical to helping individuals with autism spectrum disorders manage complex medical and psychiatric co-morbidities that start in childhood and evolve with age. We conducted a brief online survey of pediatric and adult providers at Kaiser Permanente Northern California, a large integrated health care delivery system, to assess departmental policies and personal approaches to transitioning patients with special health care needs, including autism spectrum disorders. A total of 354 pediatric (43% response rate) and 715 adult providers (30% response rate) completed the survey. A large majority of departments did not have transition policies in place. Many providers in both primary care and mental health did not provide transition resources, review legal changes, use standardized assessment tools, or communicate with the next/previous provider. Transition planning was usually delayed until age 17 or later. Most providers did not have consistent approaches to the transition of care for youth with special health care needs and may be inadequately prepared to handle the process for patients with autism spectrum disorders. As the population of transition-age youth with autism spectrum disorders continues to grow, there is urgent need to understand how to best implement transition policies that promote early communication between providers and families and track outcomes among transitioning patients with special health care needs.Lay The transition from pediatric to adult care is a critical inflection point for the long-term health of youth with autism spectrum disorders and other special health care needs. However, for many patients, their caregivers, and providers, the transition lacks coordination. This survey study demonstrates that pediatric and adult providers struggle to implement many components of transition best practices for youth with autism and other chronic conditions, highlighting the urgent need for enhanced medical coordination and additional transition training and resources.
      Citation: Autism
      PubDate: 2020-06-18T12:00:12Z
      DOI: 10.1177/1362361320926318
       
  • Emotional self-awareness in autism: A meta-analysis of group differences
           and developmental effects
    • Authors: Charlotte F Huggins, Gemma Donnan, Isobel M Cameron, Justin HG Williams
      First page: 307
      Abstract: Autism, Ahead of Print.
      Emotional self-awareness is increasingly suggested to be an area of difficulty in autism that may predict socioemotional outcomes for this population. However, whether emotional self-awareness is consistently diminished in autism across age and methodology remains unclear. We systematically reviewed 47 papers measuring emotional self-awareness in autistic (n = 1387) and non-autistic (n = 1433) participants. Most studies relied on self-report. Of studies testing for group differences, the majority (32/41) found significantly poorer emotional self-awareness in autism. Meta-analyses of self-report measures found that emotional self-awareness was significantly poorer in autism (d = 1.16). However, when examining age groups individually, autistic children of age 12 years and under were not significantly different from their peers (d = 0.03). Instead, difficulties emerged during adolescence (d = 0.63) and increased with age (d = 1.16 – 1.58). The pattern of emotional self-awareness difficulties being more common in autism, and worsening with age is similar to the development of mental health difficulties in autism. However, findings rely on self-perception and so may reflect poor self-beliefs of socioemotional competence. We propose that negative self-beliefs in autistic populations may account for findings of low emotional self-awareness.Lay abstractAutistic people are thought to have difficulties with identifying and understanding their own emotions. This is referred to as emotional self-awareness. It is important to study emotional self-awareness as people who are more able to understand their own emotions, whether they are autistic or not, are more able to respond to them appropriately, as well as to identify them in other people. It has not yet been confirmed whether autistic people have difficulties with emotional self-awareness, or if any reported difficulties are actually due to the way in which emotional self-awareness is measured in autistic people. If these difficulties do exist, it is also not known when these difficulties emerge. In this research, we reviewed 47 existing studies that measured emotional self-awareness in autistic and non-autistic adults and children. We also compared studies that measured emotional self-awareness in different ways. We found that autistic adults did seem to have poorer emotional self-awareness compared to their neurotypical peers. However, this was not the case with autistic children of age 12 years and below. Instead, differences in emotional self-awareness only seemed to emerge during adolescence. Moreover, these difficulties seemed to increase with age. These results suggest that difficulties with emotional self-awareness may not be inherent in autism. Instead, they may emerge alongside the greater social and mental health difficulties that are experienced by many autistic people during adolescence. We therefore suggest that it is important to find out more about, and subsequently support, the emotional self-awareness difficulties that autistic adolescents may encounter.
      Citation: Autism
      PubDate: 2020-11-06T07:32:32Z
      DOI: 10.1177/1362361320964306
       
  • Adverse event reporting in intervention research for young autistic
           children
    • Authors: Kristen Bottema-Beutel, Shannon Crowley, Micheal Sandbank, Tiffany G Woynaroski
      First page: 322
      Abstract: Autism, Ahead of Print.
      Our team examined 150 reports on group-design, non-pharmacological interventions for young autistic children, to determine the prevalence of adverse event reporting. We found that only 11 studies mentioned adverse events; one indicated adverse events occurred, and an additional three indicated adverse effects occurred (i.e. adverse events that could be attributed to the intervention). We also coded reasons for participant withdrawal and found that of the 54 studies that reported reasons for withdrawal, 10 studies reported reasons that could be categorized as adverse events, 8 reported reasons that could be categorized as adverse effects, and an additional 12 studies reported reasons that were too vaguely described to determine adverse event status. We recommend that autism intervention researchers make concerted efforts to monitor, classify, and report adverse events so that practitioners, policy-makers, and families are better equipped to weigh potential benefits of interventions against potential harms.Lay abstractIn this study, we looked at published research on interventions for young autistic children that did not involve administering medication. We were interested in determining how often studies reported on whether adverse events (i.e. physical or psychological distress to the participants) or adverse effects (i.e. adverse events that are thought to be caused by the intervention) had occurred. We found that of the 150 reports we examined, only 11 mentioned adverse events. One of these studies reported adverse events occurred, and three reported that adverse effects occurred. We also reviewed the studies to examine the reasons that were given to explain why any participants dropped out of the intervention (termed “withdrawal”), to determine if any of these reasons could be considered adverse events or adverse effects. Fifty-four studies described reasons for withdrawal, and 10 of these studies had reasons that could be categorized as an adverse event, 8 studies had reasons that could be categorized as an adverse effect, and an additional 12 studies had reasons that were too vaguely described to determine whether they were adverse events or not. We recommend that autism intervention researchers develop more systematic methods of looking for and reporting adverse events and effects, so that professionals and families can be better informed when choosing to enroll their autistic children in interventions.
      Citation: Autism
      PubDate: 2020-10-20T05:36:13Z
      DOI: 10.1177/1362361320965331
       
  • Research priorities of the autism community: A systematic review of key
           stakeholder perspectives
    • Authors: Laura Roche, Dawn Adams, Megan Clark
      First page: 336
      Abstract: Autism, Ahead of Print.
      In recent years, a shift in focus has seen researchers seek to identify the priorities and preferences of key stakeholders to shape the direction of future research for those on the autism spectrum. The process of synthesising the views, knowledge and expertise of key stakeholders with either a lived or shared experience of autism is invaluable and can inform future research to ensure that it is meaningful and has the greatest impact. A number of studies have reported on the research priorities of groups within the autism community, but to date, these studies stand alone and priorities have not been considered collectively. This systematic review identified seven studies that reported on key stakeholders’ priorities for autism research. Studies were synthesised according to (a) the target participant group and method of recruitment, (b) the methodology used to elucidate the viewpoint of stakeholders, (c) the country of stakeholders and (d) commonly identified priorities. Common features across studies note the importance of prioritising initiatives that will result in real-world changes in the lives of the autism community and more research across the lifespan. There is an identified need for more diverse stakeholder voices to influence the identification of priorities for future research foci. Continued inclusion of the autistic and autism communities in priority-setting research is imperative for achieving significant outcomes in autism research and to progress the field in an effective and socio-ethical way.Lay abstractIt has become very important in autism research to ask the autistic community about what kinds of research they think should be done in order to improve the lives of people with autism. Many studies have reported on research goals from people within the autism community, such as parents of people on the autism spectrum, and practitioners and clinicians who support people on the autism spectrum. So far, the research goals from all of these studies have not been considered together, which is important so that all autism research can be working towards the same goals. We reviewed seven studies that looked at the priorities for autism research from key people within the autism community. Each of the reviewed studies are described according to (a) the types of people involved in the study, (b) the way the research goals from each group of people were identified, (c) the country where they were from and (d) the most common research goals from across all of the studies. Within these seven studies, research that will lead to real-world changes in the daily lives of the autism community and a greater focus on skill training for people with autism across their lives were found to be very important. From this review, we found that it is also very important to include a range of different people from the autism community when deciding what autism research goals should be focused on so that future research can be more helpful for the autism community.
      Citation: Autism
      PubDate: 2020-11-04T05:05:15Z
      DOI: 10.1177/1362361320967790
       
  • Explicit and implicit self-esteem in youth with autism spectrum disorders
    • Authors: Renske van der Cruijsen, Bianca E Boyer
      First page: 349
      Abstract: Autism, Ahead of Print.
      Although the link between self-esteem and psychopathology has been well established, studies on self-esteem in individuals with autism spectrum disorder are lacking. In this study, we aimed to (1) compare explicit and implicit self-esteem of youth with autism spectrum disorder to typically developing peers and to (2) explore relationships of implicit-, explicit-, and discrepant self-esteem measures with co-occurring internalizing and externalizing problems in youth with autism spectrum disorder. For this purpose, 25 individuals with autism spectrum disorder and 24 individuals as age- and intelligence quotient–matched controls aged 8–16 years participated in this study. Results showed lower explicit self-esteem in autism spectrum disorder compared to typically developing youth and no differences in implicit self-esteem between groups. In youth with autism spectrum disorder, low explicit self-esteem was related to co-occurring depression symptoms, whereas lower implicit self-esteem was related to externalizing symptoms. These results show that youth with autism spectrum disorder are at risk for developing low explicit self-esteem, which appears to be related to often co-occurring internalizing symptoms. This emphasizes the need to focus more on self-esteem in assessment and treatment of youth with autism spectrum disorder.Lay abstractHaving a stable and good self-esteem is important for maintaining a good mental health. However, having low self-esteem is a risk factor for developing depressive, anxious, or uncooperative/aggressive symptoms. While many individuals with an autism spectrum disorder have these symptoms, there is a lack of studies on self-esteem in this group. We studied self-esteem of youth with autism spectrum disorder and the connection to their co-occurring symptoms. To do this, different self-esteem profiles were investigated, including explicit self-esteem (how someone says their self-esteem is after reflecting on it), implicit self-esteem (how someone’s self-esteem is on a task that does not give them time to reflect on it), and the difference between both (high explicit with low implicit self-esteem or low explicit with high implicit self-esteem). Our results show that youth with autism spectrum disorder report lower self-esteem than youth without autism spectrum disorder when they have reflected on it (explicit self-esteem). And parents of children with autism spectrum disorder report that their children have even lower self-esteem. Implicit self-esteem was the same for youth with and without autism spectrum disorder. Furthermore, we found that within youth with autism spectrum disorder, there was a negative relationship between explicit self-esteem and depressive symptoms, and between implicit self-esteem and externalizing behavior. Taken together, youth with autism spectrum disorder are at risk for developing low self-esteem and when they do they have a higher risk of developing co-occurring problems. Therefore we stress that it is important to measure and improve the self-esteem of youth with autism spectrum disorder, so they develop less co-occurring problems and have a higher quality of life.
      Citation: Autism
      PubDate: 2020-10-15T09:33:50Z
      DOI: 10.1177/1362361320961006
       
  • Development and preliminary validation of a depressive symptomatology
           detection scale among children and adolescents on the autism spectrum
    • Authors: Lucie Bellalou, Naomi Downes, Emilie Cappe
      First page: 361
      Abstract: Autism, Ahead of Print.
      High rates of depressive disorders are reported among young people on the autism spectrum. This condition is generally assessed using measures validated for typically developing young people. Tools adapted to children on the autism spectrum are not tailored to detect Major Depressive Disorder, nor have they been used among samples with an intellectual disability. To fill this gap, this article builds a novel Scale for evaluating depressive symptoms among youth on the autism spectrum (Echelle d’évaluation de la symptomatology dépressive spécifique à l’autisme) and evaluates its performance using a sample of 153 young people on the autism spectrum in France. The Echelle d’évaluation de la symptomatology dépressive spécifique à l’autisme was completed by parents of children and adolescents (aged 3–17 years) via an interview with a psychologist. The Echelle d’évaluation de la symptomatology dépressive spécifique à l’autisme has very good internal consistency, as well as good content validity. The scale is composed of two factors: (1) behavioral changes and (2) emotional and cognitive changes. Future studies should replicate this validation study with a larger sample size and investigate interrater reliability. Overall, results suggest preliminary support for using the Echelle d’évaluation de la symptomatology dépressive spécifique à l’autisme among youth on the autism spectrum.Lay abstractMany individuals on the autism spectrum experience depressive symptoms. These symptoms contribute to poor quality of life and may have a more negative impact than core autistic features. However, identifying depressive symptoms among individuals on the spectrum is a real challenge. In this study, we investigate the psychometric qualities of a French scale for evaluating depressive symptoms among youth on the autism spectrum. Participants were 153 autistic children and adolescents aged between 3 and 17 years. The majority of the sample was male (73.86%). One of their parents completed the scale for evaluating depressive symptoms among youth on the autism spectrum during an interview with a psychologist. Overall, the findings indicate the scale may be reliably used with children and adolescents on the autism spectrum. Experts deemed the items as being representative of depressive symptoms. The scale is composed of two factors: behavioral changes on one hand and cognitive and emotional changes on the other. The results are encouraging and show the scale is a promising instrument for assessing Major Depressive Disorder symptomatology among youth on the spectrum. Future studies should focus on testing this scale among adults and developing an auto-evaluative section.
      Citation: Autism
      PubDate: 2020-09-21T07:25:45Z
      DOI: 10.1177/1362361320958209
       
  • How is autistic identity in adolescence influenced by parental disclosure
           decisions and perceptions of autism'
    • Authors: Ariana Riccio, Steven K Kapp, Allison Jordan, Anna Marie Dorelien, Kristen Gillespie-Lynch
      First page: 374
      Abstract: Autism, Ahead of Print.
      A large body of literature examines parental interpretations of their child’s autism diagnosis. However, research examining intersections between parental disclosure of their child’s autism diagnosis to their child and their child’s identity development is lacking. The primary aim of this study was to analyze if parental decisions to disclose/withhold their child’s autism diagnosis influence adolescents’ perceptions of autism and identity development. Adolescent participants (n = 19) and their mothers, recruited from an informal educational program, completed in-person interviews and online questionnaires, respectively. Adolescents were told about their autism diagnosis in varying ways. Adolescents whose parents voluntarily disclosed their autism diagnosis to them described autism and themselves more positively than adolescents who did not experience voluntary disclosure. Although parents and teens showed similarities on a group level when defining autism, parents and children expressed diverse themes in their definitions of autism. Findings suggest that parents can help their children develop neurodiversity-aligned perspectives about autism by mindfully discussing autism with them early in their development.Lay abstractThere is a lot of research about how parents think about their child’s autism but we don’t know much about how parents talk with their kids about autism. How parents talk with their kids about autism may shape how kids see autism. A team of autistic and non-autistic people (including a mother of an autistic person) did a study. We wanted to know if how parents talk with their kids about autism shapes how their kids see autism. Nineteen teens from a summer camp did interviews and surveys. Their mothers did surveys. Teens learned about if they had autism in different ways. Some teens still didn’t know they were autistic. Teens whose moms chose to tell them about their autism talked about autism and themselves more positively than teens whose moms didn’t choose to talk with them about autism. Only teens whose moms chose to talk with them about autism described themselves as having social strengths. Teens had a harder time defining autism than moms. However, teens and moms talked about autism in similar ways. Our study shows that parents can help their kids see autism and themselves more positively by talking with their kids about autism early in development.
      Citation: Autism
      PubDate: 2020-09-24T08:59:31Z
      DOI: 10.1177/1362361320958214
       
  • How do core autism traits and associated symptoms relate to quality of
           life' Findings from the Longitudinal European Autism Project
    • Authors: Bethany FM Oakley, Julian Tillmann, Jumana Ahmad, Daisy Crawley, Antonia San José Cáceres, Rosemary Holt, Tony Charman, Tobias Banaschewski, Jan Buitelaar, Emily Simonoff, Declan Murphy, Eva Loth
      First page: 389
      Abstract: Autism, Ahead of Print.
      Previous studies have reported reduced quality of life in autism. Improving quality of life for autistic people is, therefore, a key priority for clinical research and practice. However, the relative impact of core autism traits (e.g. social-communication difficulties), as compared to associated mental health symptoms (e.g. anxiety, depression) on quality of life remains poorly understood. This is despite at least 20%–50% of autistic individuals experiencing associated anxiety and/or depression symptoms. Hence, we measured subjective quality of life in 573 six to thirty-year-olds (autism spectrum disorder N = 344), using two widely validated questionnaires. Adults self-reported on the World Health Organization Quality of Life–Brief instrument. Parents of children/adolescents completed the Child Health and Illness Profile. We assessed individual variability across both measures and modelled associations between quality of life, core autism traits, anxiety, and depression symptoms. Across both age groups and quality of life measures, autistic individuals scored lower than comparison individuals, on average, particularly for physical health in adults (d = −1.24, 95% confidence interval: [−1.56, −0.93]) and school achievement for children/adolescents (d = −1.06, 95% confidence interval: [−1.29, −0.84]). However, a notable proportion of autistic individuals (36%–71% across quality of life domains) did not have reduced quality of life. Across ages and quality of life measures, severity of associated symptoms was significantly related to reduced quality of life on several domains, after accounting for core autism traits. Most notably, depression symptoms were related to reduced physical/psychological well-being in both adults (β ⩾ −0.34) and children/adolescents (β = −0.29, 95% confidence interval: [−0.36, −0.14]). For children/adolescents, anxiety symptoms (β ⩾ −0.28) and core social-communication difficulties (β ⩾ −0.22) were also related to subjective quality of life outcomes. Overall, findings indicate that not all autistic individuals experience reduced subjective quality of life. Variability in quality of life is significantly influenced by associated symptoms, across developmental stage. This may provide a tractable target for mental health services to improve quality of life for autistic individuals over the lifespan.Lay abstractPrevious studies suggest that some autistic individuals report lower satisfaction, or well-being, with different aspects of everyday life than those without autism. It is unclear whether this might be partly explained by symptoms of anxiety and/or depression, which affect at least 20%–50% of autistic people. In this study, we measured individual differences in well-being in 573 six to thirty-year-olds with and without a diagnosis of autism. We investigated whether individual differences in well-being were explained by autism traits (e.g. social-communication difficulties) and/or anxiety and depression symptoms. We showed that, though well-being was lower for some autistic individuals, compared to those without autism, many autistic individuals reported good well-being. Where well-being was reduced, this was particularly explained by depression symptoms, across all ages. For children/adolescents, anxiety and social-communication difficulties were also related to some aspects of well-being. Our study suggests that support and services for improving mental health, especially depression symptoms, may also improve broader outcomes for autistic people.
      Citation: Autism
      PubDate: 2020-10-07T07:07:13Z
      DOI: 10.1177/1362361320959959
       
  • Gastrointestinal problems are associated with increased repetitive
           behaviors but not social communication difficulties in young children with
           autism spectrum disorders
    • Authors: Payal Chakraborty, Kimberly L H Carpenter, Samantha Major, Megan Deaver, Saritha Vermeer, Brianna Herold, Lauren Franz, Jill Howard, Geraldine Dawson
      First page: 405
      Abstract: Autism, Ahead of Print.
      Individuals with autism spectrum disorder are more likely than typically developing individuals to experience a range of gastrointestinal abnormalities, including chronic diarrhea, constipation, food sensitivities, and abdominal pain. These gastrointestinal symptoms have been associated with higher levels of irritability and aggressive behavior, but less is known about their relationship with core autism spectrum disorder symptoms. We investigated the relationship between autism spectrum disorder and gastrointestinal symptom severity while accounting for three associated behavioral symptom domains (Irritability, Aggressiveness, and Specific Fears), in a sample of 176 children (140 males and 36 females) ages 2–7 years old with autism spectrum disorder. Most participants had at least one reported gastrointestinal symptom (93.2%) and had more than one gastrointestinal symptom (88.1%). After accounting for each associated behavioral symptom domain, repetitive behaviors and stereotypies were positively associated with gastrointestinal symptom severity. Social and communication difficulties were not significantly associated with gastrointestinal symptom severity after accounting for associated behavioral symptoms. Our findings replicate a previously described association between irritability and aggression and gastrointestinal symptoms. Furthermore, gastrointestinal symptom severity is associated with repetitive behaviors, a subset of core autism spectrum disorder symptoms. This suggests that gastrointestinal symptoms may exacerbate repetitive behaviors, or vice versa, independent from other associated behavioral symptoms.Lay Individuals with autism spectrum disorder are more likely than typically developing individuals to experience a range of gastrointestinal abnormalities, including chronic diarrhea, constipation, food sensitivities, and abdominal pain. These gastrointestinal symptoms have been associated with higher levels of irritability and aggressive behavior, but less is known about their relationship with core autism spectrum disorder symptoms. We investigated the relationship between autism spectrum disorder symptom severity and gastrointestinal symptoms while accounting for three associated behavioral symptom domains (Irritability, Aggressiveness, and Specific Fears), in a sample of 176 children (140 males and 36 females) ages 2–7 years old with autism spectrum disorder. A large majority (93.2%) of the sample had at least one reported gastrointestinal symptom, and most (88.1%) participants had more than one gastrointestinal symptom. Various types of gastrointestinal symptoms were reported; the most common symptoms reported were constipation, food limits, gas/bloating, and stomach pain. After accounting for each associated behavioral symptom domain, repetitive behaviors and stereotypies were significantly associated with gastrointestinal symptom severity. Increased severity of autism spectrum disorder symptoms was correlated with increased gastrointestinal symptom severity. Social and communication difficulties were not significantly associated with gastrointestinal symptom severity after accounting for associated behavioral symptoms. Our findings replicate a previously described association between irritability and aggression and gastrointestinal symptoms. Furthermore, we found that repetitive behaviors, but not social or communication symptoms, are associated with gastrointestinal symptom severity, even after accounting for associated behavioral symptoms. This suggests that gastrointestinal symptoms may exacerbate repetitive behaviors, or vice versa, independent from other associated behavioral symptoms.
      Citation: Autism
      PubDate: 2020-09-25T05:53:52Z
      DOI: 10.1177/1362361320959503
       
  • Characteristics of toddlers with early versus later diagnosis of autism
           spectrum disorder
    • Authors: Lauren E Miller, Yael G Dai, Deborah A Fein, Diana L Robins
      First page: 416
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorder symptom emergence is heterogeneous, yet literature comparing young children diagnosed early versus later is relatively scant. Toddlers diagnosed with autism spectrum disorder between 12 and 18 months (n = 20), 19 and 24 months (n = 65), or 25 and 41 months (n = 27) were compared on demographics, developmental functioning, and symptoms. Later diagnosed children were more impaired than both younger groups on nonverbal reasoning, adaptive behavior, and autism spectrum disorder severity. Fine motor, receptive language, and social skills followed a linear pattern, with 25- to 41-month children more delayed than 19- to 24-month participants, who were more delayed than 12- to 18-month toddlers. Communication skills were similarly impaired across groups. Universal autism spectrum disorder screening before 18 months may detect toddlers when symptoms are milder and more amenable to intervention.Lay abstractThe emergence of autism symptoms in childhood is variable, with some children showing signs of autism spectrum disorder very early, and others not being identified until much later. Although most children in the United States are not diagnosed with autism spectrum disorder until preschool, at ages 3–4 years, symptoms can be reliably detected at 14 months. It is less certain how those toddlers diagnosed with autism spectrum disorder earlier versus later differ from each other clinically. This study revealed that young children diagnosed later in development, between ages 25 and 41 months, are more impaired on measures of cognitive, adaptive, and social functioning than their counterparts who are diagnosed with autism spectrum disorder earlier. All young children with autism spectrum disorder are impaired in communication to a similar degree, however. Universal autism screening at 18 months may identify toddlers with autism spectrum disorder when their symptoms are milder and more readily amenable to intervention. Repeated screening at 24 months is supported to detect those children missed by an earlier screening, who may be more severely affected. Caregivers should be encouraged to pursue diagnostic evaluation at an initial positive screening result to ensure timely diagnosis and treatment.
      Citation: Autism
      PubDate: 2020-09-26T11:29:57Z
      DOI: 10.1177/1362361320959507
       
  • Anxiety in autistic individuals who speak few or no words: A qualitative
           study of parental experience and anxiety management
    • Authors: Joanne Tarver, Effie Pearson, Georgina Edwards, Aryana Shirazi, Liana Potter, Priya Malhi, Jane Waite
      First page: 429
      Abstract: Autism, Ahead of Print.
      Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words.Lay abstractAnxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families' During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.
      Citation: Autism
      PubDate: 2020-10-01T08:55:51Z
      DOI: 10.1177/1362361320962366
       
  • Autistic traits are related to worse performance in a volatile reward
           learning task despite adaptive learning rates
    • Authors: Judith Goris, Massimo Silvetti, Tom Verguts, Jan R Wiersema, Marcel Brass, Senne Braem
      First page: 440
      Abstract: Autism, Ahead of Print.
      Recent theories propose that autism is characterized by an impairment in determining when to learn and when not. We investigated this by estimating learning rate in environments varying in volatility and uncertainty. Specifically, we correlated autistic traits (in 163 neurotypical participants) with modelled learning behaviour during probabilistic reward learning under the following three conditions: a Stationary Low Noise condition with stable reward contingencies, a Volatile condition with changing reward contingencies and a Stationary High Noise condition where reward probabilities for all options were 60%, resulting in an uncertain, noisy environment. Consistent with earlier findings, we found less optimal decision-making in the Volatile condition for participants with more autistic traits. However, we observed no correlations between underlying adjustments in learning rates and autistic traits, suggesting no impairment in updating learning rates in response to volatile versus noisy environments. Exploratory analyses indicated that impaired performance in the Volatile condition in participants with more autistic traits, was specific to trials with reward contingencies opposite to those initially learned, suggesting a primacy bias. We conclude that performance in volatile environments is lower in participants with more autistic traits, but this cannot be unambiguously attributed to difficulties with adjusting learning rates.Lay abstractRecent theories propose that autism is characterized by an impairment in determining when to learn and when not. Here, we investigated this hypothesis by estimating learning rates (i.e. the speed with which one learns) in three different environments that differed in rule stability and uncertainty. We found that neurotypical participants with more autistic traits performed worse in a volatile environment (with unstable rules), as they chose less often for the most rewarding option. Exploratory analyses indicated that performance was specifically worse when reward rules were opposite to those initially learned for participants with more autistic traits. However, there were no differences in the adjustment of learning rates between participants with more versus less autistic traits. Together, these results suggest that performance in volatile environments is lower in participants with more autistic traits, but that this performance difference cannot be unambiguously explained by an impairment in adjusting learning rates.
      Citation: Autism
      PubDate: 2020-10-08T09:11:01Z
      DOI: 10.1177/1362361320962237
       
  • Satisfaction with informal supports predicts resilience in families of
           children with autism spectrum disorder
    • Authors: Vanessa Fong, Emily Gardiner, Grace Iarocci
      First page: 452
      Abstract: Autism, Ahead of Print.
      The current study examined the role of informal supports in predicting resilience among families of children with autism spectrum disorder. Participants included 153 caregivers of children with autism spectrum disorder, who were between the ages of 2 and 18 years (M = 10.45; SD = 4.32). Caregivers completed a measure of satisfaction with informal supports as well as the Family Resilience Assessment Scale-autism spectrum disorder. After controlling for demographic factors and child behavioural problems, regression analyses revealed that satisfaction with informal supports significantly predicted family resilience. The findings highlight the importance of specifically strengthening informal support networks when providing services and interventions to families of children with autism spectrum disorder to foster the family’s resilience.Lay abstractThe study of resilience among individuals with disabilities and their families represents a paradigmatic shift from a deficits orientation towards a more holistic and contextualized approach focused on strength and adaptation. The current study investigated whether informal supports could help improve families’ capacity for resilience. We recruited 153 caregivers of children aged between 2 and 18 years who all had a diagnosis of autism. Participants were asked to complete surveys assessing resilience in their families as well as their satisfaction with informal supports (e.g. friends and family). Families more likely to report higher satisfaction with their informal support networks demonstrate greater resilience. The results suggest that informal social supports are a valuable resource for families in strengthening their capacity for resilience. The findings may help inform the development of interventions and services that work collaboratively and innovatively with families and their social networks to provide assistance and support in meaningful and effective ways.
      Citation: Autism
      PubDate: 2020-10-27T05:01:46Z
      DOI: 10.1177/1362361320962677
       
  • Autism and Williams syndrome: Dissimilar socio-cognitive profiles with
           similar patterns of abnormal gene expression in the blood
    • Authors: Amy Niego, Antonio Benítez-Burraco
      First page: 464
      Abstract: Autism, Ahead of Print.
      Autism spectrum disorders and Williams syndrome exhibit quite opposite features in the social domain, but also share some common underlying behavioral and cognitive deficits. It is not clear, however, which genes account for the attested differences (and similarities) in the socio-cognitive domain. In this article, we adopted a comparative molecular approach and looked for genes that might be differentially (or similarly) regulated in the blood of subjects with these two conditions. We found a significant overlap between differentially expressed genes compared to neurotypical controls, with most of them exhibiting a similar trend in both conditions, but with genes being more dysregulated in Williams syndrome than in autism spectrum disorders. These genes are involved in aspects of brain development and function (particularly dendritogenesis) and are expressed in brain areas (particularly the cerebellum, the thalamus, and the striatum) of relevance for the autism spectrum disorder and the Williams syndrome etiopathogenesis.Lay abstractAutism spectrum disorders and Williams syndrome are complex cognitive conditions exhibiting quite opposite features in the social domain: whereas people with autism spectrum disorders are mostly hyposocial, subjects with Williams syndrome are usually reported as hypersocial. At the same time, autism spectrum disorders and Williams syndrome share some common underlying behavioral and cognitive deficits. It is not clear, however, which genes account for the attested differences (and similarities) in the socio-cognitive domain. In this article, we adopted a comparative molecular approach and looked for genes that might be differentially (or similarly) regulated in the blood of people with these conditions. We found a significant overlap between genes dysregulated in the blood of patients compared to neurotypical controls, with most of them being upregulated or, in some cases, downregulated. Still, genes with similar expression trends can exhibit quantitative differences between conditions, with most of them being more dysregulated in Williams syndrome than in autism spectrum disorders. Differentially expressed genes are involved in aspects of brain development and function (particularly dendritogenesis) and are expressed in brain areas (particularly the cerebellum, the thalamus, and the striatum) of relevance for the autism spectrum disorder and the Williams syndrome etiopathogenesis. Overall, these genes emerge as promising candidates for the similarities and differences between the autism spectrum disorder and the Williams syndrome socio-cognitive profiles.
      Citation: Autism
      PubDate: 2020-11-04T05:05:35Z
      DOI: 10.1177/1362361320965074
       
  • Performance of the Autism Observation Scale for Infants with
           community-ascertained infants showing early signs of autism
    • Authors: Kristelle Hudry, Lacey Chetcuti, Maryam Boutrus, Sarah Pillar, Emma K Baker, Stefanie Dimov, Josephine Barbaro, Jonathan Green, Andrew JO Whitehouse, Kandice J Varcin
      First page: 490
      Abstract: Autism, Ahead of Print.
      Often included within ‘high-risk sibling’ studies, the Autism Observation Scale for Infants (AOSI) has only one independent replication study and no evaluation with community-ascertained cohorts. We administered the AOSI and established clinical measures with 103 infants (68% male) at ‘high autism likelihood’ on the Social Attention and Communication Surveillance - Revised (SACS-R) tool, at 9–14 months of age and again 6 months later. AOSI Total scores showed adequate internal consistency and strong inter-rater agreement (live- or video-coded) and were approximately normally distributed at each visit. Modest significant associations presented between Time 1 AOSI scores and concurrent developmental/adaptive skills measures. Concurrent associations were stronger at Time 2, particularly between AOSI Total and Autism Diagnostic Observation Schedule (ADOS) Social Affect scores. AOSI scores were only moderately associated across Time 1 and 2 assessments, as were Time 1 AOSI with Time 2 ADOS scores. These data from a clinically indicated cohort broadly replicate previous AOSI validity accounts from ‘high-risk sibling’ studies, particularly beyond the first year. Strong inter-rater agreement indicates viable AOSI inclusion within protocols necessitating blinded evaluation (e.g. intervention trials). Moderate within-participant stability suggests that, like ‘high-risk siblings,’ community-ascertained infants experience variable early trajectories.Lay We investigated whether a commonly used research assessment – the Autism Observation Scale for Infants (AOSI) – accurately measures autism behaviours among infants showing early signs of autism identified within the community. The AOSI is often included in studies tracking the development of infants at increased likelihood of autism, such as the infant siblings of diagnosed children. However, the suitability of this measure has not previously been tested with community-referred infants. We administered the AOSI with infants when aged 9 to 14 months and again 6 months later. Our researchers – independent of the AOSI development team and newly trained on this measure – were able to administer the brief interactive assessment and score it accurately. The infants’ AOSI scores were linked to their scores on other established and validated clinical assessments, particularly at the second visit when average age was 18 months. Stronger correspondence of AOSI and other scores at this second visit suggests early autism behaviours are better established and more consistent by 18 months of age, even though these infants showed clear enough signs of possible autism to prompt referral to our study around 12 months of age. However, the moderate association of AOSI scores over time suggests that, like infant siblings – who mostly do not develop autism – community-identified infants showing early signs may also have variable developmental pathways in early life.
      Citation: Autism
      PubDate: 2020-10-23T06:38:53Z
      DOI: 10.1177/1362361320965397
       
  • Self-compassion as a mediator of the association between autistic traits
           and depressive/anxious symptomatology
    • Authors: John Galvin, Abby Howes, Bethany McCarthy, Gareth Richards
      First page: 502
      Abstract: Autism, Ahead of Print.
      Self-compassion refers to the extension of kindness to oneself when faced with inadequacies, shortcomings or failures. This study examined the mediating role of self-compassion in the relationship between autistic traits and depressive/anxious symptomatology in the general population. Participants included 164 university students (69 males and 95 females) ranging in age from 18 to 51 years (mean = 23.16, standard deviation = 7.81). Participants completed the Autism Spectrum Quotient, the Self-Compassion Scale, and the Hospital Anxiety and Depression Scale. A series of multiple mediation analyses was conducted using the bootstrapping method, and it was found that Total Self-Compassion and the two subscales of Compassionate Self-Responding and Uncompassionate Self-Responding partially mediated the relationship between autistic traits and anxious/depressive symptoms. The indirect effect of self-compassion accounted for 41.9% of the variance in the relationship between autistic traits and depressive symptoms and 50% of the variance in the relationship between autistic traits and anxiety symptoms. It was also further found that the correlation between autistic traits and self-compassion was significantly stronger in males than females. Although preliminary, the current findings suggest that self-compassion could potentially serve as a target for clinical intervention in individuals with elevated autistic traits who experience anxiety and/or depression.Lay In this study, we asked 164 undergraduate students to complete an online questionnaire. The questionnaire measured the students’ levels of autistic traits, self-compassion, and experience of anxiety and depression. We were interested in knowing if self-compassion (defined as the extension of kindness to oneself when faced with challenges) had any influence on the relationship between autistic traits and experiences of anxiety and depression. The results of the study indicated that self-compassion may be an important factor influencing the relationship between autistic traits and mental health, with higher levels of self-compassion being related to more positive mental health outcomes. Although the findings should be considered preliminary in nature, they do suggest that self-compassion could potentially be a target for clinical intervention in people with elevated autistic traits and experience anxiety and/or depression.
      Citation: Autism
      PubDate: 2020-10-27T05:02:26Z
      DOI: 10.1177/1362361320966853
       
  • Autism spectrum disorder screening in preschools
    • Authors: Angel Hoe-chi Au, Kathy Kar-man Shum, Yongtian Cheng, Hannah Man-yan Tse, Rose Mui-fong Wong, Johnson Li, Terry Kit-fong Au
      First page: 516
      Abstract: Autism, Ahead of Print.
      Can non-clinicians spot preschoolers likely to have autism spectrum disorder by observing their everyday peer interaction' We set out to develop a screening tool that capitalizes on peer interaction as a naturalistic “stress test” to identify children more likely than their peers to have autism spectrum disorder. A total of 304 3- to 4-year-olds were observed at school with an 84-item preliminary checklist; data-driven item reduction yielded a 13-item Classroom Observation Scale. The Classroom Observation Scale scores correlated significantly with Autism Diagnostic Observation Schedule–2 scores. To validate the scale, another 322 2- to 4-year-olds were screened using the Classroom Observation Scale. The screen-positive children and randomly selected typically developing peers were assessed for autism spectrum disorder 1.5 years later. The Classroom Observation Scale as used by teachers and researchers near preschool onset predicted autism spectrum disorder diagnoses 1.5 years later (odds ratios = 14.6 and 6.7, respectively). This user-friendly 13-item Classroom Observation Scale enables teachers and healthcare workers with little or no clinical training to identify, with reliable and valid results, preschoolers more likely than their peers to have autism spectrum disorder.Lay abstractWith professional training and regular opportunities to observe children interacting with their peers, preschool teachers are in a good position to notice children’s autism spectrum disorder symptomatology. Yet even when a preschool teacher suspects that a child may have autism spectrum disorder, fear of false alarm may hold the teacher back from alerting the parents, let alone suggesting them to consider clinical assessment for the child. A valid and convenient screening tool can help preschool teachers make more informed and hence more confident judgment. We set out to develop a screening tool that capitalizes on peer interaction as a naturalistic “stress test” to identify children more likely than their peers to have autism spectrum disorder. A total of 304 3- to 4-year-olds were observed at school with an 84-item preliminary checklist; data-driven item reduction yielded a 13-item Classroom Observation Scale. The Classroom Observation Scale scores correlated significantly with Autism Diagnostic Observation Schedule–2 scores. To validate the scale, another 322 2- to 4-year-olds were screened using the Classroom Observation Scale. The screen-positive children and randomly selected typically developing peers were assessed for autism spectrum disorder 1.5 years later. The Classroom Observation Scale as used by teachers and researchers near preschool onset predicted autism spectrum disorder diagnoses 1.5 years later. This user-friendly 13-item Classroom Observation Scale enables teachers and healthcare workers with little or no clinical training to identify, with reliable and valid results, preschoolers more likely than their peers to have autism spectrum disorder.
      Citation: Autism
      PubDate: 2020-11-06T07:32:51Z
      DOI: 10.1177/1362361320967529
       
  • Depressive symptoms of autism spectrum disorder children’s siblings in
           Greece: Associations with parental anxiety and social support
    • Authors: Evangelia Koukouriki, Sryridon-Georgios Soulis, Elias Andreoulakis
      First page: 529
      Abstract: Autism, Ahead of Print.
      Previous research has shown elevated levels of depressive symptoms in typically developing siblings of children with autism spectrum disorders. The current study investigates for associations between the depressive symptoms of school-aged typically developing siblings of children with autism and parental mental health, perceived social support as well as demographic factors. Eighty-five Greek typically developing siblings of autistic children and their parents provided information concerning children’s depressive symptoms (assessed with the Children’s Depression Inventory), demographics, parent mental health status (assessed with the General Health Questionnaire-28), and perceived social support (assessed with the Multidimensional Scale of Perceived Social Support). Typically developing siblings showed higher levels of depressive symptoms compared to normative data. The hierarchical multiple regressions performed showed that typically developing siblings’ depressive symptoms were significantly associated with parental anxiety and perceived social support from the family. Of note, parental anxiety remained associated with typically developing siblings’ depressive symptoms independent of perceived social support. These findings demonstrate a direct link between typically developing siblings’ psychopathological symptoms and those of their parents and highlight the need for family-centered interventions, not limited to providing social support.Lay abstractTypically developing siblings of children with autism spectrum disorders are often found to exhibit elevated levels of stress and depressive symptoms compared to siblings of typically developing children or siblings of children with other disabilities. Besides the behavioral problems of the child with autism and certain demographic characteristics that have been recognized as factors associated with typically developing siblings’ psychological distress, the role of parental mental health and the social support from the family has not been studied sufficiently. The goal of this study is to assess depressive symptoms in 85 Greek school-aged typically developing siblings of children with autism and to investigate for any associations between siblings’ depressive symptoms on one hand and demographics, parental mental health, and perceived social support on the other hand. It was found that typically developing siblings had higher levels of depressive symptoms compared to children from a general population sample. In addition, parental anxiety and social support from the family as perceived by the parents themselves were identified as independently associated with typically developing siblings’ depressive symptoms. Of note, perceived social support failed to attenuate the association between parental anxiety and siblings’ depressive symptoms. These results highlight the importance of assessing both parental and typically developing siblings’ psychological state to implement interventions addressed to the needs of all family members.
      Citation: Autism
      PubDate: 2020-10-22T05:35:05Z
      DOI: 10.1177/1362361320966847
       
  • The role of loneliness as a mediator between autism features and mental
           health among autistic young adults
    • Authors: Hillary K Schiltz, Alana J McVey, Bridget Dolan Wozniak, Angela D Haendel, Rachel Stanley, Alexis Arias, Nakia Gordon, Amy Vaughan Van Hecke
      First page: 545
      Abstract: Autism, Ahead of Print.
      Autistic adults commonly experience anxiety and depression. These mental health concerns are often tied to social experiences, such that mental well-being can be supported by social connection and deteriorated by loneliness. The mediating role of social and emotional loneliness (i.e. social isolation and lack of emotional attachment, respectively) between autism features and mental health has yet to be empirically tested among autistic adults. Here, 69 autistic young adults completed self-report questionnaires assessing social contact (Friendship Questionnaire), autism features (Autism Quotient), mental health (Liebowitz Social Anxiety Scale, Social Phobia Inventory, Beck Depression Inventory), and loneliness (Social and Emotional Loneliness Scale for Adults). Positive associations emerged between autism features, social loneliness, family loneliness, social anxiety, and depression. In addition, more social contact was related to less social and family loneliness and less social anxiety but was not related to depression. Mediation analyses indicated significant indirect effects of social contact and autism features on mental health through social loneliness. Indirect effects partially held substituting family loneliness for social loneliness and did not hold using romantic loneliness. In light of these results, the scientific and clinical implications of the role of loneliness for autistic young adults are discussed and recommendations provided.Lay abstractAutistic adults commonly experience mental health concerns including social anxiety and depression, which can have negative effects on their quality of life. It is not completely clear, however, why rates of mental health concerns are so high. Some evidence suggests that social connectedness might play a key role. The goal of this study was to explore links between loneliness, mental health concerns, autism features, and social contact among autistic adults and test whether the links between mental health with autism features and social contact can be explained by loneliness. Researchers in this study collected data using questionnaires completed by 69 autistic young adults. Autistic adults who reported more autism features also reported more social and family loneliness, higher levels of social anxiety and depression, and fewer initiated social contacts. In addition, adults with more social contact initiations were likely to report lower levels of social and family loneliness and social anxiety but not depression. Results showed that the link from social engagement and autism features to social anxiety and depression symptoms could be mostly explained by loneliness. The results of this study expand previous findings by illustrating one factor (loneliness) that might be responsible for the high rates of mental health concerns among adults on the autism spectrum. These findings highlight the importance of studying factors related to mental health concerns among autistic adults and ways to best support social connectedness for the mental well-being of autistic young adults.
      Citation: Autism
      PubDate: 2020-10-31T05:05:29Z
      DOI: 10.1177/1362361320967789
       
  • Difference in default mode network subsystems in autism across childhood
           and adolescence
    • Authors: Joe Bathelt, Hilde M Geurts
      First page: 556
      Abstract: Autism, Ahead of Print.
      Differences in the default mode network are among the most replicated brain-level findings in autistic individuals. Furthermore, subregions within the default mode network are associated with cognitive functions such as mentalising that are immediately relevant to cognitive theories of autism. Recent evidence suggests that the default mode network comprises partially independent subsystems that are tied to dissociable cognitive processes, specifically a medial temporal lobe subsystem involved in memory retrieval, a dorsal medial prefrontal cortex subsystem involved in social processing and a posterior cingulate cortex – anterior medial prefrontal cortex system that ties the other subsystems together. This modular organisation is thought to arise in childhood development. The current analysis investigated differences in default mode network subsystems in 193 autistic boys and young men (5–18 years) and in a group of 208 age-matched boys and young men without a diagnosis using resting-state functional magnetic resonance imaging from the data repository of the Autism Brain Imaging Data Exchange. The results indicated a developmental trend towards greater modularisation of the default mode network across childhood and adolescence in autism, mostly driven by reduced between-subnetwork connection strength. In contrast, default mode network subnetwork organisation was relatively stable in the comparison group. We suggest that these differences reflect delayed maturation of the default mode network in autism.Lay abstractNeuroimaging research has identified a network of brain regions that are more active when we daydream compared to when we are engaged in a task. This network has been named the default mode network. Furthermore, differences in the default mode network are the most consistent findings in neuroimaging research in autism. Recent studies suggest that the default mode network is composed of subnetworks that are tied to different functions, namely memory and understanding others’ minds. In this study, we investigated if default mode network differences in autism are related to specific subnetworks of the default mode network and if these differences change across childhood and adolescence. Our results suggest that the subnetworks of the default mode network are less differentiated in autism in middle childhood compared to neurotypicals. By late adolescence, the default mode network subnetwork organisation was similar in the autistic and neurotypical groups. These findings provide a foundation for future studies to investigate if this developmental pattern relates to improvements in the integration of memory and social understanding as autistic children grow up.
      Citation: Autism
      PubDate: 2020-11-28T05:06:10Z
      DOI: 10.1177/1362361320969258
       
  • Developmental associations between joint engagement and autistic
           children’s vocabulary: A cross-lagged panel analysis
    • Authors: Kristen Bottema-Beutel, So Yoon Kim, Shannon Crowley, Paul J Yoder
      First page: 566
      Abstract: Autism, Ahead of Print.
      Cross-lagged panel analysis was used to examine associations between two joint engagement variables; higher order supported joint engagement and higher order supported joint engagement that co-occurs with caregiver’s follow-in talk (higher order supported joint engagement + follow-in), and expressive and receptive vocabulary in a group of young autistic children (n = 91) with language delay (mean chronological age = 39 months). Variables were measured twice, 8 months apart. Coefficients for cross-lagged variable pairs were derived from structural equation models. Early higher order supported joint engagement was significantly associated with later expressive and receptive vocabulary (bs = 0.18 and 0.26, respectively), and early higher order supported joint engagement + follow-in was significantly associated with later expressive and receptive vocabulary (bs = 0.14 and 0.15, respectively). Associations between early vocabulary and later joint engagement were not significant. Linear contrasts between cross-lagged associations did not show a significantly superior association for any early joint engagement variables and later vocabulary variables. However, our results suggest that higher order supported joint engagement and higher order supported joint engagement + follow-in may be useful initial intervention targets for developmental interventions aimed at promoting autistic children’s language development who are initially language delayed.Lay abstractIn this study, we used a cross-lagged panel analysis to examine correlations over time between two types of engagement between children and their parents and children’s later expressive and receptive vocabularies. This kind of design can help researchers understand which early developmental achievements “drive” later developmental achievements. It is important for intervention researchers to know which developmental achievements happen first, so that they can set intervention goals appropriately. The two joint engagement variables we examined were (a) higher order supported joint engagement, which occurs when caregivers influence their child’s play with toys and the child reciprocally responds to the caregiver, but does not manage the interaction by shifting gaze between the toys and the caregiver, and (b) higher order supported joint engagement that co-occurs with caregiver’s follow-in talk (higher order supported joint engagement + follow-in). Follow-in talk occurs when the caregiver talks about objects and events that the child is focused on. Ninety-one autistic children (n = 91) with language delay (mean chronological age = 39 months) participated, along with their primary caregivers. Each of the four variables was measured twice, 8 months apart. Our statistical procedures showed that early higher order supported joint engagement and early higher order supported joint engagement + follow-in were significantly associated with later expressive and receptive vocabulary. In contrast, associations between early vocabulary variables and later joint engagement variables were not significant. Our results suggest that higher order supported joint engagement and higher order supported joint engagement + follow-in may be useful initial intervention targets, for developmental interventions aimed at promoting language development in autistic children who are initially language delayed.
      Citation: Autism
      PubDate: 2020-11-04T05:04:55Z
      DOI: 10.1177/1362361320968641
       
  • “Physical activity is beneficial to anyone, including those with ASD”:
           Antecedents of nurses recommending physical activity for people with
           autism spectrum disorder
    • Authors: Sarah Tiner, George B Cunningham, Alison Pittman
      First page: 576
      Abstract: Autism, Ahead of Print.
      People with autism spectrum disorder are less physically active than are their peers. Nurses can play a key role in helping to promote such behaviors, but they do so sparingly. The purpose of this study, therefore, was to examine the degree to which nurses recommend physical activity to patients with autism spectrum disorder, and to identify antecedents thereof. Adopting a mixed methods approach, data were collected from a representative sample of nurses (n = 180) working in the United States. Results from regression analyses indicate that nurses were only moderately likely to recommend physical activity. When perceived barriers to physical activity were low, perceived benefits of physical activity held a positive, significant association with recommendations. However, when perceived barriers were high, the relationship between perceived benefits and recommendations was no longer significant. Inductive thematic analysis of the qualitative data showed the value nurses place on physical activity, how they interpret barriers and benefits, and strategies for making physical activity inclusive for people with autism spectrum disorder. In conclusion, nurses have an opportunity to more frequently promote physical activity to their patients with autism spectrum disorder and, in doing so, help mitigate some of the poor health outcomes people with autism spectrum disorder experience.Lay abstractParticipation in regular physical activity is linked with physical, psychological, and social improvements. Nevertheless, persons with autism spectrum disorder participate at lower levels than do their peers. Nurses can play a key role in helping to promote such behaviors, but do so sparingly. The purpose of this study is to examine the degree to which nurses recommend physical activity to people with autism spectrum disorder. Even though a number of scholars have examined the role of health professionals in promoting physical activity, comparatively little research has examined nurses. Further, previous scholars have largely focused on the promotion of physical activity to patients in general. However, people with disabilities and people with autism spectrum disorder, specifically, are frequently overlooked when it comes to physical activity promotion. Data were collected from a representative sample of nurses (n = 180) working in the United States. Results indicate that nurses were only moderately likely to recommend physical activity. When perceived barriers were low, perceived benefits held a positive, significant association with recommendations. However, when perceived barriers were high, the relationship between perceived benefits and recommendations was no longer significant. Analysis of qualitative data showed the value nurses place on physical activity, how they interpret barriers and benefits, and strategies for making physical activity inclusive for people with autism spectrum disorder. In conclusion, nurses have an opportunity to more frequently promote physical activity to their patients with autism spectrum disorder and, in doing so, help mitigate some of the poor health outcomes people with autism spectrum disorder experience. The authors identified implications for nursing education and professional development, as well as for sport and recreation managers charged with delivering physical activity to people with autism spectrum disorder.
      Citation: Autism
      PubDate: 2020-11-28T05:06:29Z
      DOI: 10.1177/1362361320970082
       
  • A commentary on interpreting the United States preventive services task
           force autism screening recommendation statement
    • Authors: Emily Hickey, R Christopher Sheldrick, Jocelyn Kuhn, Sarabeth Broder-Fingert
      First page: 588
      Abstract: Autism, Ahead of Print.
      In 2016, the US Preventive Services Task Force concluded that there was “insufficient” (“I” statement) evidence to support universal primary care screening for autism spectrum disorder. The statement led to controversy among research and clinical communities. Although a number of papers have since been published arguing for the potential benefit of autism spectrum disorder screening, none adequately address the potential harms of autism spectrum disorder screening. This evidence gap may relate to confusion regarding how the US Preventive Services Task Force conceptualizes and evaluates potential harm. In this commentary, we explore how the US Preventive Services Task Force operationalizes harm and discuss how the potential for harm was described in the “I” statement on autism spectrum disorder screening. This information can serve as a guide for investigators working to study the benefits and harms of autism spectrum disorder screening in order to fill the research gaps cited by the US Preventive Services Task Force report. Finally, we recommend future research directions for exploring harms of autism spectrum disorder screening, filling cited research gaps, and ultimately ensuring that the benefits of autism spectrum disorder screening truly outweigh the harms for all children and their families.
      Citation: Autism
      PubDate: 2020-09-14T07:44:43Z
      DOI: 10.1177/1362361320957463
       
  • To reduce the average age of autism diagnosis, screen preschoolers in
           primary care
    • Authors: Katharine E Zuckerman, Sarabeth Broder-Fingert, R Christopher Sheldrick
      First page: 593
      Abstract: Autism, Ahead of Print.
      The American Academy of Pediatrics recommends autism spectrum disorder screening at the 18- and 24-month well-child visits. However, despite widespread toddler screening, many children are not diagnosed until school age, and delayed diagnosis is more common among low-income and minority children. Offering autism spectrum disorder screening at preschool well-child checks might reduce disparities and lower the overall age of diagnosis and service initiation. However, screening tools that span the preschool ages and are tailored for primary care are needed.Lay abstractPediatric primary care providers check for autism signs, usually using a standard checklist, at 18- and 24-month well-child visits. When the checklist shows possible autism, children should be referred for additional treatment and evaluation with an autism specialist. However, many children with autism spectrum disorder are not detected as toddlers. Low-income and minority children are particularly likely to have a late autism spectrum disorder diagnosis. Checking for autism at preschool-aged well-child visits might be one way to identify autism spectrum disorder earlier, especially for low-income and minority children.
      Citation: Autism
      PubDate: 2020-10-31T05:06:01Z
      DOI: 10.1177/1362361320968974
       
 
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