Autistic Adults Research Articles

Chronic Health Conditions Among Adults With Intellectual and Developmental Disabilities in a State Medicaid System.

Despite a growing number of adults with intellectual and developmental disabilities (IDD) and documented risk for adverse outcomes as they age, little is known about the health and healthcare patterns of adults with different IDD throughout adulthood. This study uses Wisconsin Medicaid claims data to characterize health conditions among adults with IDD. Results indicate high prevalence of asthma, diabetes, heart disease, and hypertension. Heart disease rates were particularly high, having been observed among 39% of autistic adults, 64% of autistic adults with intellectual disability (ID), 67% of adults with Down syndrome, and 75% of adults with ID only. Given there are no known biological differences underlying increased morbidities among most people with IDD, developing inclusive prevention measures should be prioritized in future research.

Ervaringen van ouderen met het krijgen van de diagnose autisme

The experiences of ten older adults, who received their autism diagnosis later in life (after the age of 55), were acquired through semi structured interviews. The interviews were coded with the use of thematic analysis. The results show that older autistic adults often had a long history in mental healthcare, where autism was overlooked. The participants were relieved to have an explanation for their symptoms; however, they regretted not getting the diagnosis earlier in life. They were content about the treatment they received, after their diagnosis and about sharing experiences with like-minded people of their age. The participants had felt different from other people their entire life and had suffered from several psychological problems. For future research, it is recommended to study the experiences of a broader group of older adults who received their autism diagnosis in late life.

Adult Autism Research Priorities and Conceptualization in Computing Research: Invitation to Co-lead with Autistic Adults

Autism research is primarily targeted toward children and at normalizing autistic traits. We conducted a literature review of computing research on adult autism, focusing on identifying research priorities set by autistic adults and their allies, determining participation levels, identifying how autism is conceptualized, and the types of technologies designed and their purposes. We found: (1) that computing research in adult autism is neither representative of older and non-binary adults nor of autistic adults living outside the USA and Europe; (2) a lack of technologies geared towards the priorities set by autistic adults and their allies; and (3) that computing research primarily views adult autism as a medical deficit and builds design solutions and technologies that follow this marginalizing narrative. We discuss the status quo and provide recommendations for computing researchers to encourage research built on user needs and that is respectful of autistic adults.

Self-Report of Restricted Repetitive Behaviors in Autistic Adults: A Systematic Review

Self-Report of Restricted Repetitive Behaviors in Autistic Adults: A Systematic Review

Self-Reported COVID-19 Vaccine and Booster Acceptance and Hesitancy Among Autistic Adults in Pennsylvania: Cross-Sectional Analysis of Survey Data.

The autistic population is rapidly increasing; meanwhile, autistic adults face disproportionate risks for adverse COVID-19 outcomes. Limited research indicates that autistic individuals have been accepting of initial vaccination, but research has yet to document this population's perceptions and acceptance of COVID-19 boosters. This study aims to identify person-level and community characteristics associated with COVID-19 vaccination and booster acceptance among autistic adults, along with self-reported reasons for their stated preferences. Understanding this information is crucial in supporting this vulnerable population given evolving booster guidelines and the ending of the public health emergency for the COVID-19 pandemic. Data are from a survey conducted in Pennsylvania from April 11 to September 12, 2022. Demographic characteristics, COVID-19 experiences, and COVID-19 vaccine decisions were compared across vaccination status groups. Chi-square analyses and 1-way ANOVA were conducted to test for significant differences. Vaccination reasons were ranked by frequency; co-occurrence was identified using phi coefficient correlation plots. Most autistic adults (193/266, 72.6%) intended to receive or received the vaccine and booster, 15% (40/266) did not receive or intend to receive any vaccine, and 12.4% (33/266) received or intended to receive the initial dose but were hesitant to accept booster doses. Reasons for vaccine acceptance or hesitancy varied by demographic factors and COVID-19 experiences. The most significant were previously contracting COVID-19, desire to access information about COVID-19, and discomfort with others not wearing a mask (all P=.001). County-level factors, including population density (P=.02) and percentage of the county that voted for President Biden (P=.001) were also significantly associated with differing vaccination acceptance levels. Reasons for accepting the initial COVID-19 vaccine differed among those who were or were not hesitant to accept a booster. Those who accepted a booster were more likely to endorse protecting others and trusting the vaccine as the basis for their acceptance, whereas those who were hesitant about the booster indicated that their initial vaccine acceptance came from encouragement from someone they trusted. Among the minority of those hesitant to any vaccination, believing that the vaccine was unsafe and would make them feel unwell were the most often reported reasons. Intention to receive or receiving the COVID-19 vaccination and booster was higher among autistic adults than the population that received vaccines in Pennsylvania. Autistic individuals who accepted vaccines prioritized protecting others, while autistic individuals who were vaccine hesitant had safety concerns about vaccines. These findings inform public health opportunities and strategies to further increase vaccination and booster rates among generally accepting autistic adults, to better support the already strained autism services and support system landscape. Vaccination uptake could be improved by leveraging passive information diffusion to combat vaccination misinformation among those not actively seeking COVID-19 information to better alleviate safety concerns.

Self-Reported Psychosocial Outcomes of Autistic Adults Living in China and The Netherlands

Self-Reported Psychosocial Outcomes of Autistic Adults Living in China and The Netherlands

Validation of the camouflaging autistic traits questionnaire short form (CATQ-SF)

BackgroundCamouflaging of autistic traits involves hiding or compensating for autistic characteristics, often due to stigma or a desire to fit in with others. This behaviour has been associated with mental health issues in autistic individuals. The 2 5-item Camouflaging Autistic Traits Questionnaire (CAT-Q) is the most commonly used self-report measure of camouflaging. In this study, a 9-item short form version was developed for use in clinical and research settings. Aims: To construct and psychometrically validate a brief self-report measure of camouflaging. MethodThe Camouflaging Autistic Traits Questionnaire – Short Form (CATQ-SF) was developed and its factor structure and psychometric properties were evaluated in two studies. Study 1 used a large, online sample of autistic and non-autistic adults (N = 832) to evaluate the factor structure, psychometric properties, and measurement invariance of the CATQ-SF. Study 2 used an independent sample of autistic and non-autistic adults (N = 80) to test Study 1's findings. ResultsIn Study 1, evidence for a three-factor structure was observed, with good internal consistency (combined autistic & non-autistic α = 0.84). In addition, the instrument demonstrated measurement invariance, and reliably predicted higher levels of autistic traits. In Study 2, the 3-factor structure was replicated, and good internal consistency was again observed (combined autistic and non-autistic α = 0.89). In both studies, psychometric properties were of similar or higher validity compared to the full-form CAT-Q. ConclusionsThe CATQ-SF can be used by clinicians and researchers to measure camouflaging in autistic and non-autistic adults quickly and reliably.

A critical hit: Dungeons and Dragons as a buff for autistic people.

Tabletop role-playing games (TTRPGs) are popular hobbies that may offer specific social benefits for autistic people. This study investigated the ability of TTRPGs to provide a safe space where autistic adults could develop relationships with other autistic adults while engaging in character and world-building. A group of eight autistic adults were split into two groups and taken through a short-form online Dungeons and Dragons campaign over 6 weeks run by one of the researchers. The researcher then led a series of individual semi-structured interviews discussing how participants felt interacting in and out of the TTRPG. Several key themes were identified as important aspects of why autistic people could benefit from such an environment. Analysis showed that while real-life interactions could be challenging, in TTRPG play, they felt they experienced significantly fewer struggles. Results suggested that TTRPGs can provide a safe space environment where autistic adults can engage in productive social interactions with like-minded individuals. It also may allow autistic participants to experience 'bleed' or the ability to take on a new character that changes the way they feel about themselves outside of the game. Future directions for this work are discussed.

Autistic Adults Avoid Unpredictability in Decision-Making.

Decision-making under unpredictable conditions can cause discomfort in autistic persons due to their preference for predictability. Decision-making impairments might furthermore be associated with a dysregulation of sex and stress hormones. This prospective, cross-sectional study investigated decision-making in 32 autistic participants (AP, 14 female) and 31 non-autistic participants (NAP, 20 female) aged 18-64 years. The Iowa Gambling Task (IGT) and the Cambridge Risk Task (CRT) were used to assess decision-making under ambiguity and under risk with known outcome probabilities, respectively. Cortisol, estradiol, and testosterone serum levels were related to decision-making performance. Groups did not differ in overall IGT and CRT performance, but compared with NAP, AP preferred less profitable card decks with predictable outcomes while avoiding those with unpredictable outcomes. AP required more time to reach decisions compared to NAP. Additionally, AP without comorbid depression performed significantly worse than NAP in the IGT. Estradiol and cortisol concentrations were significant predictors of CRT scores in NAP, but not in AP. The study results imply that AP are 'risk-averse' in decision-making under ambiguity as they avoided choice options with unpredictable losses in comparison to NAP. Our findings highlight the intolerance for uncertainty, particularly in ambiguous situations. Thus, we recommend being as transparent and precise as possible when interacting with autistic individuals.Future research should explore decision-making in social situations among individuals with ASD, factoring in person-dependent variables such as depression.

"Glimmers of hope and good things": Positive aspects of caregiving to autistic adolescents and young adults.

We wanted to explore the positive, or rewarding, experiences of caregivers who were caring for older adolescents or young autistic adults. We surveyed 174 caregivers, asking questions about how they dealt with stressors, the support they had from people in their lives, and the different behaviors of the autistic youth they care for. Using an existing measure, as well as an open-ended question, we asked caregivers about the most rewarding aspects of caring for their youth. When examining survey responses, we found that caregivers who reported receiving more help and support from their autistic youth also reported more positive aspects related to caregiving. In response to our study's open-ended question, caregivers talked about the reward of seeing their youth grow and progress (e.g. learning new skills, reaching new milestones), described positive aspects of the relationship with their youth (e.g. sharing a special bond), and reflected on their own learning and personal growth as caregivers and people. Our findings highlight the positive, or rewarding, aspects of caregiving for autistic adolescents and young adults. This work will inform future work studying positive aspects of caring for autistic individuals and how this may impact caregivers' psychological well-being.

Transcallosal white matter and cortical gray matter variations in autistic adults ages 30-73 years: A bi-tensor free water imaging approach.

Background: Autism spectrum disorder (ASD) has long been recognized as a lifelong condition, but brain aging studies in autistic adults aged >30 years are limited. Free water, a novel brain imaging marker derived from diffusion MRI (dMRI), has shown promise in differentiating typical and pathological aging and monitoring brain degeneration. We aimed to examine free water and free water corrected dMRI measures to assess white and gray matter microstructure and their associations with age in autistic adults. Methods: Forty-three autistic adults ages 30-73 years and 43 age, sex, and IQ matched neurotypical controls participated in this cross-sectional study. We quantified fractional anisotropy (FA), free water, and free water-corrected FA (fwcFA) across 32 transcallosal white matter tracts and 94 gray matter areas in autistic adults and neurotypical controls. Follow-up analyses assessed age effect on dMRI metrics of the whole brain for both groups and the relationship between dMRI metrics and clinical measures of ASD in regions that significantly differentiated autistic adults from controls. Results: We found globally elevated free water in 24 transcallosal tracts in autistic adults. We identified negligible differences in dMRI metrics in gray matter between the two groups. Age-associated FA reductions and free water increases were featured in neurotypical controls; however, this brain aging profile was largely absent in autistic adults. Additionally, greater autism quotient (AQ) total raw score was associated with increased free water in the inferior frontal gyrus pars orbitalis and lateral orbital gyrus in autistic adults. Limitations: All autistic adults were cognitively capable individuals, minimizing the generalizability of the research findings across the spectrum. This study also involved a cross-sectional design, which limited inferences about the longitudinal microstructural changes of white and gray matter in ASD. Conclusions: We identified differential microstructural configurations between white and gray matter in autistic adults and that autistic individuals present more heterogeneous brain aging profiles compared to controls. Our clinical correlation analysis offered new evidence that elevated free water in some localized white matter tracts may critically contribute to autistic traits in ASD. Our findings underscored the importance of quantifying free water in dMRI studies of ASD.

Major Depressive Disorder with Catatonia: A Phenotype Related to Autistic Traits and High Suicidality.

Background: Major Depressive Disorder (MDD) represents a significant global health concern, often complicated by comorbidities such as catatonia and autism spectrum disorder (ASD). Recognizing the interplay among these conditions and their impact on suicidal tendencies is crucial for effective clinical management. Methods: A total sample of 147 subjects with MDD was divided into Significant Catatonia (SC) and Non-Significant Catatonia (NSC) groups based on Catatonia Spectrum (CS) scores. Participants were evaluated through the Structured Clinical Interview for DSM-5, Research Version (SCID-5-RV), the Adult Autism Subtreshold Spectrum (AdAS Spectrum), and the Mood Spectrum-Self Report questionnaires. Statistical analyses included Mann-Whitney U test, Chi-square test, logistic regression analyses, and a decision tree model. Results: The SC group exhibited higher CS, AdAS Spectrum, and MOODS-SR total and domain scores compared to the NSC group. Individuals with significant autistic traits were over-represented in the SC group, as well as participants with higher suicidality, suicidal ideation, and a history of suicide attempts. The total AdAS Spectrum and MOOD-SR score, the AdAS domain "Hyper-hypo reactivity to sensory input", and the "Cognitive depressive" MOOD-SR domain were predictive of belonging to the SC group. Suicidality levels appeared to be higher in clinically significant ASD, intermediate in subjects with autistic traits (AT), and low in the absence of AT. Conclusions: the study suggests the existence of a specific phenotype of MDD associated with catatonia, characterized by elevated autistic traits and suicide risk.

The process of co‐design for a new anxiety intervention for autistic children

AbstractBackgroundMental health difficulties are common for autistic people; however, almost no interventions have been co‐designed with the autistic community. Co‐design has the potential to add important insights from lived experience into intervention design, but there are currently limited examples of how rigorously to undertake this practice. This paper details a worked model of co‐design and its process, focussed on adapting an evidenced parent‐led intervention for non‐autistic child anxiety (HYC), to meet the needs of young autistic children. The aim is to provide an example of co‐design, integrating autistic, parental, academic, clinical, experience and expertise.MethodsUsing prior literature and theory, including Experience‐Based Co‐Design, we developed an iterative and collaborative process between the research team and an expert reference group (ERG). The research team comprised autistic and non‐autistic members. The ERG included parents (autistic and non‐autistic) of autistic children with anxiety problems, autistic adults with experience of anxiety problems, and clinicians with experience supporting autistic children with anxiety problems. The ERG and research team reviewed information from qualitative research interviews with autistic children with anxiety problems and their parents along with information from clinical experience and the academic literature to reach consensus on the adapted intervention design.ResultsThe creation of a truly co‐designed intervention that includes a neurodiversity‐affirmative perspective, alongside CBT techniques. With anxiety problems experienced by autistic children being framed by combining the impacts of being neurodivergent in a neurotypical world, developmental science and well known cognitive behavioural models of child‐anxiety.ConclusionCo‐design can help to integrate multiple perspectives and result in the creation of interventions that are potentially relevant and acceptable to autistic people, their family members, and clinicians.

The Lived Experience of Thinking in Pictures in Self-Declared Autistic Adults

The Lived Experience of Thinking in Pictures in Self-Declared Autistic Adults

Adapting the PEERS® for Young Adults Program for Autistic Adults across the Lifespan.

The Program for the Education and Enrichment of Relational Skills (PEERS®) is an evidence-based intervention developed for autistic individuals to support social communication, peer interactions, independence, and interpersonal relationships. Despite a demonstrated effectiveness for young autistic individuals in the US and several other countries, PEERS has yet to be modified to support the needs of autistic adults across the lifespan. The present study describes how our team sought autistic voices to adapt PEERS for adults of any age. Specifically, we aimed to address the needs of middle-aged and older adults and adapt the curriculum to be more neurodiversity-affirming. Between two cohorts that completed the program consecutively, we evaluated the acceptability of the adapted PEERS program and made refinements based on feedback from autistic participants and their study partners. Results indicated that Cohort 2 reported higher satisfaction with the PEERS components and overall program than Cohort 1, suggesting effective refinement. We present a framework of adaptations that more specifically address the needs of middle-aged and older adults in a neurodiverse-affirming way compared to previous iterations. Our approach to implementing an adapted PEERS curriculum across the adult lifespan may serve as a model for improved clinical care and cultivate the acceptance of neurodiversity in the interpersonal domains of autistic adults' lives.

Pupillary response during social emotion tasks in autism spectrum disorder.

Autistic individuals encounter challenges in recognizing emotional expressions of others. Pupillary response has been proposed as an indicator of arousal dysregulation or cognitive load. The pupillary response of autistic individuals during socio-affective tasks remains unclear. This study investigated pupillary response in autistic adults when viewing emotional faces/eyes and recognizing emotions during the Reading the Mind in the Eyes Test (RMET) and watching interpersonal touch scenes in the social touch task. The study included 98 participants diagnosed with autism spectrum disorder and 37 typically developing controls (TD). Pupil size was measured using the Tobii X2-30 Eye Tracker. The results showed that autistic adults had larger maximal pupil sizes, smaller minimal pupil sizes, and greater change rates of pupil size, particularly during the RMET Eyes task. Clinical correlations revealed that attention switching difficulty positively correlated with mean pupil size in TD participants, while social communication deficitspositively correlated with mean pupil size in autistic participants. In conclusion, our findings suggest atypical pupillary responses in autistic adults during socio-affective tasks, indicating heightened cognitive demand. Further investigation is necessary to understand the underlying mechanisms and their association with autistic traits.

Autistic Adults in the Workplace: Relationship Between Job Satisfaction, Work Engagement, Camouflaging, and Internalized Stigma

Abstract Date Presented 03/21/24 The study examined the relationship between job satisfaction, work engagement, camouflaging, and internalized stigma among autistic adults with various ages (18+) and work experience. The significant results support the need for OT interventions. Primary Author and Speaker: Yan-hua Huang Additional Authors and Speakers: Jonathan Alcantara, Hara Calderon, Deniece Caraballo, Anthony Gonzalez, Kyle Joshua Gusto

Non-COVID Respiratory Infections Related Emergency Room Visits Among Autistic Adults in the United States

IntroductionThis is a retrospective study to examine the risk of non-COVID-19 respiratory infection (RI) related emergency department (ED) visits and hospitalizations among autistic adults compared to non-autistic adults using the 2018 Healthcare Cost and Utilization Project Nationwide Emergency Department Sample (HCUP-NEDS). MethodsThe data were analyzed in 2022 using the ICD-10-CM codes to extract about 46,996 autistic case records that were matched by age and sex with non-autistic records (140,997) in a 1:3 case-control ratio. Respiratory infections were also identified using the ICD-10-CM codes and classified by type. Logistic regression models were conducted for the likelihood of presenting with RI infections to the ED and subsequent hospitalization. All models were adjusted for covariates. ResultsAutistics were more likely to present with any type of respiratory infection at the emergency department (AOR = 1.83: CI= 1.69-2.42), lower respiratory infections (AOR=1.37: CI=1.09-1.50), and pneumonia (AOR=2.42: CI=1.98-2.47) compared to non-autistics. They are also more likely to be hospitalized from RIs during ED visits (AOR=3.87: CI=3.21-4.30), including upper and lower RIs, pneumonia, and bronchitis. ConclusionsAutistic individuals were more likely to experience emergency department visits and hospitalizations due to respiratory infections compared to non-autistic individuals. Amid growing evidence of the disproportionate impact of COVID-19 on the autistic population, our findings highlight a broader, pre-existing burden of respiratory infections among autistic adults in the US that extends beyond the recent pandemic.

Community Participation in Autistic Young Adults: A Mixed-Method Study

Abstract Date Presented 03/23/24 This study used a mixed-method approach to explore autistic young adults’ community participation (CP) in depth. Findings highlight the strengths of using multiple assessment methods in OT research and practice to holistically understand CP. Primary Author and Speaker: Yeook Kim Contributing Authors: Gael Orsmond

Experiences of and treatment preferences for insomnia in autistic adults: An Interpretative Phenomenological Analysis

Insomnia and insomnia symptoms are frequent experiences of autistic people resulting in pronounced daytime effects and poor quality of life. This study employed an Interpretive Phenomenological Analysis approach to explore lived experiences of autistic adults with insomnia, perspectives on current available interventions and future treatment preferences. Twelve participants (aged 21–48 years old) were interviewed following screening for insomnia, using the Sleep Condition Indicator (scores ranged from 1 to 12; cut off >16). Each interview was analysed individually developing Personal Experiential Themes for each case, which were then mapped across cases based on identified patterns and connections. Results yielded rich personal accounts and identified two Group Experiential Themes: “The Night is Friendlier” and “It Doesn't Really Work for Me”. Participants described experiences with sleeplessness throughout their adult lives and often since childhood. They discussed how the night time offers them a more relaxed and safe space to freely behave as they wish. Advice and interventions were viewed by participants via the prism of underlying social issues, such as autism acceptance and trust, and how these structures can affect participants' experiences with insomnia, help seeking and effectiveness of current interventions. Our results highlight the need for inclusion of autistic people in insomnia research through co-production and co-creation as well as clinical practice and delivery. This is the first study to integrate perspectives and experiences of autistic people towards insomnia and sleep-related advice by health care professionals. Findings are discussed in relation to theoretical and practical implications, as well as directions for future research.