1. Anderson C, Butt C, Sarsony C. {{Young Adults on the Autism Spectrum and Early Employment-Related Experiences: Aspirations and Obstacles}}. {J Autism Dev Disord}. 2020.
In the United States, employment outcomes for young adults with an autism spectrum disorder (ASD) are poor, with many unemployed, underemployed, or otherwise unable to achieve their potential regardless of cognitive ability. To explore employment expectations and experiences, qualitative interviews were conducted with 12 young adults with ASD and 28 parents. Transcripts were analyzed using the constant comparative method associated with a grounded theory approach. Three major themes emerged: Employment Aspirations and Potential, Challenges of Job Finding and Keeping, and Differing Parent and Young Adult Work-Related Roles and Views. Issues discussed include the need to foster meaningful pre-employment opportunities, acknowledge the role of families in employment issues, provide ASD-focused workplace support, and effectively coordinate intersecting systems (e.g., schools, agencies, employers).
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2. Buckley E, Pellicano E, Remington A. {{« The Real Thing I Struggle with is Other People’s Perceptions »: The Experiences of Autistic Performing Arts Professionals and Attitudes of Performing Arts Employers in the UK}}. {J Autism Dev Disord}. 2020.
This research examined in-depth the employment experiences of autistic performing arts professionals and the attitudes and adjustments of performing arts employers. We interviewed 18 autistic performing arts professionals and 19 performing arts employers. Autistic performing arts professionals described facing challenges in the workplace. Some autistic professionals had access to support, but the majority felt that there was not enough available and highlighted many ways in which they could be better supported. Performing arts employers varied in their experiences of working with autistic people, many had limited knowledge about autism-specific support or relied on other professionals to provide it. These findings shed light on current unmet support needs of autistic performing arts professionals, and provide key recommendations for research and practice.
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3. Choi KR, Knight EA, Stein BD, Coleman KJ. {{Autism Insurance Mandates in the US: Comparison of Mandated Commercial Insurance Benefits Across States}}. {Maternal and child health journal}. 2020.
INTRODUCTION: Autism mandates are laws that require commercial insurers to cover certain evidence-based treatments for Autism Spectrum Disorder (ASD). The purpose of this study was to review state variability in autism insurance mandates and the benefits they cover and to discuss recommendations for research and policy to improve ASD services across states. METHODS: Data were extracted from 2001 to 2020 from all 50 states plus the District of Columbia (N = 51) from policy text. News articles and websites of ASD advocacy organizations were also reviewed to ensure inclusion of the most recent policy changes. Descriptive statistics and heatmaps were used to characterize the autism mandate landscape and visualize variability in benefit parameters across states. RESULTS: Autism mandates vary greatly in benefit parameters across US states, but there is a common set of benefits that most states have adopted. These include coverage of provider-recommended ASD services except for medical equipment, coverage up to an age limit of 18 to 21, an annual dollar limit of $36,000 with no restriction on the number of hours or visits, no lifetime cap on benefits, and requirement of BCBA(R) certification or its equivalent for providers of ABA. DISCUSSION: There is a need for continued research evaluating the impact of autism mandates and benefit parameters on access to care, service utilization, and clinical outcomes for the ASD population. Stakeholder engagement and understanding the impact of autism mandates on clinical and patient-centered outcomes may provide direction for policy advocacy and public health initiatives.
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4. Gong L, Liu Y, Yi L, Fang J, Yang Y, Wei K. {{Abnormal Gait Patterns in Autism Spectrum Disorder and Their Correlations with Social Impairments}}. {Autism Res}. 2020.
Ground walking in humans is typically stable, symmetrical, characterized by smooth heel-to-toe ground contact. Previous studies on children with autism spectrum disorder (ASD) identified various gait abnormalities. However, they produced inconsistent findings, particularly for the occurrence of toe walking and gait symmetry between feet, owing to their reliance on retrospective reports, visual analysis of videos, or kinematic analysis of the gait. The present study examined gait functions in children with ASD using plantar pressure that quantified foot-ground interaction with high spatial and temporal resolutions. Fifty-eight 4-6-year-old children with ASD (12 low-functioning and 46 high-functioning autism) and 28 age-matched typically developed children walked straight 6 m at their preferred speed for 10 repetitions. We found that both ASD groups walked with more flat-footed contact pattern, more left-right asymmetry, and larger step-to-step variability than their controls. Furthermore, these abnormal gait characteristics were related to social impairments measured by the Autism Spectrum Quotient and Social Responsive Scale, supporting a close association between impaired motor coordination and core symptoms of autism. LAY SUMMARY: We examined gait functions among children with autism by measuring their foot plantar pressure during simple straight walking. Children with ASD walked with a characteristic foot-ground contact pattern with inappropriate contact forces and large step-to-step variability when compared with their age-matched controls. These walking abnormalities were dependent on their social impairments but independent from their intelligence, indicating a close relationship between atypical motor coordination and core symptoms of autism.
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5. Krieger B, Piskur B, Schulze C, Beurskens A, Moser A. {{Environmental pre-requisites and social interchange: the participation experience of adolescents with autism spectrum disorder in Zurich}}. {Disabil Rehabil}. 2020: 1-14.
Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school.Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15-21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure.Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: « environmental prerequisites to attend activities », which consists of five subthemes, such as « the company of trusted persons » and « the provision of knowledge and information », and « social interchange and engagement », which consists of three subthemes and describes how actual involvement can be supported.Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.IMPLICATIONS FOR REHABILITATIONAdolescents with autism spectrum disorder perceive every kind of participation outside of home and school as social.We recommend using the company of trusted persons to encourage adolescents with autism spectrum disorder to actively participate outside of home and school.Rehabilitation professionals should promote environment-based approaches to achieve participation of adolescents with autism spectrum disorder.Rehabilitation professionals should actively approach, acknowledge and gently guide adolescents with autism spectrum disorder to support engagement in participation.
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6. Mottron L, Bzdok D. {{Autism spectrum heterogeneity: fact or artifact?}}. {Mol Psychiatry}. 2020.
The current diagnostic practices are linked to a 20-fold increase in the reported prevalence of ASD over the last 30 years. Fragmenting the autism phenotype into dimensional « autistic traits » results in the alleged recognition of autism-like symptoms in any psychiatric or neurodevelopemental condition and in individuals decreasingly distant from the typical population, and prematurely dismisses the relevance of a diagnostic threshold. Non-specific socio-communicative and repetitive DSM 5 criteria, combined with four quantitative specifiers as well as all their possible combinations, render limitless variety of presentations consistent with the categorical diagnosis of ASD. We propose several remedies to this problem: maintain a line of research on prototypical autism; limit the heterogeneity compatible with a categorical diagnosis to situations with a phenotypic overlap and a validated etiological link with prototypical autism; reintroduce the qualitative properties of autism presentations and of current dimensional specifiers, language, intelligence, comorbidity, and severity in the criteria used to diagnose autism in replacement of quantitative « social » and « repetitive » criteria; use these qualitative features combined with the clinical intuition of experts and machine-learning algorithms to differentiate coherent subgroups in today’s autism spectrum; study these subgroups separately, and then compare them; and question the autistic nature of « autistic traits ».
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7. Nicolaidis C, Raymaker DM, McDonald KE, Lund EM, Leotti S, Kapp SK, Katz M, Beers LM, Kripke C, Maslak J, Hunter M, Zhen KY. {{Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations}}. {Autism in adulthood : challenges and management}. 2020; 2(1): 61-76.
Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included: (1) the use of difficult vocabulary, confusing terms, or figures of speech; (2) complex sentence structure, confusing grammar, or incomplete phrases; (3) imprecise response options; (4) variation in item response based on different contexts; (5) anxiety related to not being able to answer with full accuracy; (6) lack of items to fully capture the autism-specific aspects of a construct; and (7) ableist language or concepts. Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants. Lay summary: Why is this topic important?: To understand what can improve the lives of autistic adults, researchers need to collect survey data directly from autistic adults. However, most survey instruments were made for the general population and may or may not work well for autistic adults.What is the purpose of this article?: To use lessons learned from our experience adapting surveys-in partnership with autistic adults-to create a set of recommendations for how researchers may adapt instruments to be accessible to autistic adults.What did the authors do?: Between 2006 and 2019, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) and the Partnering with People with Developmental Disabilities to Address Violence Consortium used a participatory research approach to adapt many survey instruments for use in six separate studies. We reviewed records from these partnerships and identified important lessons.What is this recommended adaptation process like?: The adaptation process includes the following: (1) Co-creating collaboration guidelines and providing community partners with necessary background about terminology and processes used in survey research; (2) Collaboratively selecting which constructs to measure; (3) Discussing each construct so that we can have a shared understanding of what it means; (4) Identifying existing instruments for each construct; (5) Selecting among available instruments (or deciding that none are acceptable and that we need to create a new measure); (6) Assessing the necessary adaptations for each instrument; (7) Collaboratively modifying prefaces, items, or response options, as needed; (8) Adding « hotlink » definitions where necessary to clarify or provide examples of terms and constructs; (9) Creating new measures, when needed, in partnership with autistic adults;(10)Considering the appropriateness of creating proxy report versions of each adapted measure; and(11)Assessing the adapted instruments’ psychometric properties.What were common concerns about existing instruments?: Partners often said that, if taking a survey that used the original instruments, they would experience confusion, frustration, anxiety, or anger. They repeatedly stated that, faced with such measures, they would offer unreliable answers, leave items blank, or just stop participating in the study. Common concerns included the use of difficult vocabulary, confusing terms, complex sentence structure, convoluted phrasings, figures of speech, or imprecise language. Partners struggled with response options that used vague terms. They also felt anxious if their answer might not be completely accurate or if their responses could vary in different situations. Often the surveys did not completely capture the intended idea. Sometimes, instruments used offensive language or ideas. And in some cases, there just were not any instruments to measure what they thought was important.What were common adaptations?: Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct.How will this article help autistic adults now or in the future?: We hope that this article encourages researchers to collaborate with autistic adults to create better survey instruments. That way, when researchers evaluate interventions and services, they can have the right tools to see if they are effective.
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8. Tomaszewski B, Hepburn S, Blakeley-Smith A, Rogers SJ. {{Developmental Trajectories of Adaptive Behavior From Toddlerhood to Middle Childhood in Autism Spectrum Disorder}}. {Am J Intellect Dev Disabil}. 2020; 125(3): 155-69.
Longitudinal growth modeling was utilized to examine adaptive behavior over eight years across the three time points (i.e., ages 2-10). Seventy-six parents completed the Vineland Adaptive Behavior Scales interviews of adaptive behavior. Child participants completed standardized developmental testing and an executive function task in toddlerhood and the Autism Diagnostic Observation Schedule across all time points. Growth models were specified for communication, daily living skills, and socialization domains of adaptive behavior. Mental age in toddlerhood was a significant predictor of trajectories of communication, daily living skills, and socialization. Executive function and autism severity were significant predictors of socialization. Findings suggest executive function as a potential target for promoting the growth of adaptive behavior skills in addition to autism symptomology.
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9. Willingham E. {{Autistic people take the helm of studies}}. {Science (New York, NY)}. 2020; 368(6490): 460.
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10. Wong J, Coster WJ, Cohn ES, Orsmond GI. {{Identifying School-Based Factors that Predict Employment Outcomes for Transition-Age Youth with Autism Spectrum Disorder}}. {J Autism Dev Disord}. 2020.
There is a growing need to provide appropriate services to help students with autism spectrum disorder (ASD) transition to employment. Limited research has investigated what aspects of support should be prioritized when preparing youth with ASD for employment. By conducting structural equation modeling using a nationally-representative dataset on high school students receiving special education services (NLTS-2), this study examined the malleable predictors of employment during the transition and developed a model to examine the relationships between predictors and employment outcomes. The findings suggested two pathways for youth with ASD. For youth with higher daily functioning skills (DFS), academic performance mediated the relationship between parent participation and employment. For youth with lower DFS, school-based transition supports was the key mediator.
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11. Yaneva V, Ha LA, Eraslan S, Yesilada Y, Mitkov R. {{Detecting High-functioning Autism in Adults Using Eye Tracking and Machine Learning}}. {IEEE transactions on neural systems and rehabilitation engineering : a publication of the IEEE Engineering in Medicine and Biology Society}. 2020.
The purpose of this study is to test whether visual processing differences between adults with and without highfunctioning autism captured through eye tracking can be used to detect autism. We record the eye movements of adult participants with and without autism while they look for information within web pages. We then use the recorded eye-tracking data to train machine learning classifiers to detect the condition. The data was collected as part of two separate studies involving a total of 71 unique participants (31 with autism and 40 control), which enabled the evaluation of the approach on two separate groups of participants, using different stimuli and tasks. We explore the effects of a number of gaze-based and other variables, showing that autism can be detected automatically with around 74% accuracy. These results confirm that eye-tracking data can be used for the automatic detection of high-functioning autism in adults and that visual processing differences between the two groups exist when processing web pages.
