Autistic Young Adults Research Articles

Life After High School: The Employment Experiences of Autistic Young Adults

The present study examined the employment landscape for 129 autistic young adults. Data were collected over multiple waves including high school and early adulthood. Parents participated in interviews and responded to questions regarding young adult employment outcomes, on-the-job supports, job match, and overall job satisfaction. The predictive relationship between in-school variables and employment outcomes was examined. Findings indicate over 50% of the sample had at least one job working independently in the community for pay. Parents reported the need for both formal and informal support to both obtain and sustain employment. Over half of the parents reported that the young adult’s job was aligned with their interests/strengths and that the young adult was satisfied. Predictive analyses indicated a relationship between work-based learning experiences in high school and general education involvement during high school and later paid employment in adulthood. Future research, limitations, and implications for practice are discussed.

An Empirical Qualitative Investigation into Psychosexual Development in and Sex Education for Autistic Youth: Insights from Autistic and Non-Autistic Young Adults.

The present study was designed to examine autistic and non-autistic young adults' lived experience in psychosexual development and sex education and to solicit recommendations on how to improve sex education programs. Participants included 10 autistic young adults and 10 non-autistic young adults aged 18 to 24 years. The two groups were matched for sex and education level. One-on-one semi-structured interviews were conducted. Participants' responses were analyzed using comparative interpretative phenomenological analysis. Four superordinate themes emerged: (1) "Who am I as a sexual being"; (2) Making sense of psychosexual development; (3) Sources of information; and (4) "Dear developers of sex education programs". Most autistic participants shared feelings of intense anxiety about romantic and sexual relationships, in part due to anticipated difficulties in social communication. Interestingly, although interview questions mostly focused on sex and adolescence, issues surrounding romantic relationships and their links to current self-concept were prominent themes in many autistic participants' responses, suggesting that autism-friendly sex education programs need to address issues related to romance and should target not only adolescents but also young adults. Also, autistic participants learned from peer interactions within the autistic community, highlighting the importance of facilitating peer exchanges and continuous learning beyond completing a program. Regarding delivery format, autistic participants valued concreteness and a mixed-sex small-group setting, and recommended using visual cues, real life examples, and role play. Autistic individuals have unmet psychosexual educational needs. Further research may consider their needs, lived experience, and recommendations when developing new autism-friendly sex education programs.

The Transactional Nature of Autistic Young Adults’ Sensory and Social Experiences: Negotiating Young Adulthood

The Transactional Nature of Autistic Young Adults’ Sensory and Social Experiences: Negotiating Young Adulthood

“I Have Tried to Fit In, but I Just Want to Be Me”: Development Toward Identity Formation in Young Autistic Adults

“I Have Tried to Fit In, but I Just Want to Be Me”: Development Toward Identity Formation in Young Autistic Adults

Community Perspectives on Psychological Assessment Reports for Autistic Young Adults.

Clinicians rarely solicit community feedback on psychological assessment reports. This study addresses this knowledge gap to: (1) improve the usefulness of reports for patients and families, (2) increase access to needed services, and (3) make reports accessible for autistic people and their families. An autistic researcher and a non-autistic researcher jointly conducted qualitative interviews with autistic young adults, caregivers, and a service provider. Participants read a de-identified psychological assessment report about an autistic young adult with intellectual disability seeking resources for his transition to adulthood. Participants provided feedback about (1) how easy the report was to read, (2) how useful the report seemed, and (3) perceptions of language (i.e., empowering/offensive/neutral). Autistic young adults, caregivers, and the service provider all expressed a desire for short and clear reports in bulleted format. Caregivers stressed the importance of (1) using simple language to describe diagnostic testing and (2) including comprehensive resources, and autistic young adults expressed the importance of (1) including information about daily routines, habits, and interests and (2) giving patients' long-term goals the same consideration as caregivers' long-term goals. We highlight that standard psychological assessment reports have not effectively met the needs of autistic people and family members. Autistic people and caregivers prefer brief reports written in plain language that include more information about the patients' interests, routines, and preferences and less detailed information about psychological tests. Our findings identify ways to improve the usefulness and readability of psychological assessment reports for autistic people.

The Transition to Adulthood: A Qualitative Study of Autism Spectrum Disorder From Military and Veteran Parents and Military-Dependent Young Adults.

Given the unique experiences of military service members and their families, military-dependent young adults (18-25 years old) with autism spectrum disorder (ASD) and their military or veteran families experience unique barriers to accessing quality mental health care during the transition to adulthood. In fact, developing services to address ASD challenges for military families is a burgeoning area of interest for the department of defense. However, there is a limited knowledge on the specific needs of military families as the young adult's transition outside of high school and lose supports. The present study conducted 3 focus groups with 16 military and veteran parents, and 3 focus groups with 10 military-dependent young adults to evaluate the needs of military-dependent young adults (17-25 years old) with ASD and military/veteran parents with a young adult with ASD. Parents reported several key topics, including barriers to services (e.g., permanent change of station, recently moving to a state and lacking awareness of the available resources), defining adulthood in terms working in a cohesive family structure, and therapy recommendations for parents and young adults with ASD transitioning to adulthood. Young adults provided key information, including describing experiences with having a parent in the military, difficulty accessing services during the transition to adulthood, and recommendations on therapy for military-dependent young adults with ASD. Military and veteran families with autistic dependents lack access to important mental-health resources. When developing programs for military families and military-dependent autistic young adults, mental health providers should consider the frequent relocations, lack of access to important transition resources, and common military values. The presence of advocates at military bases should be encouraged to help military families navigate autism services in their local community.

Challenges and Opportunities in Transitioning Autistic Individuals Into Adulthood.

Approximately 1.2 million autistic youth will reach the legal age of adulthood over the next decade. Given dynamic changes in the socioecological context of the transition to adulthood, we produced an updated transitions research agenda reflecting the perspectives of autistic young adults, care partners (parents), and professionals who use autism research. We conducted 9 focus groups: 4 young adult, 4 care partner, and 1 professional, with 59 total participants. Young adults were grouped by self-reported identity: (1) racial and ethnic minority, (2) lesbian, gay, bisexual, transgender, queer, intersex, asexual, and other identities, and (3) nonspeaking, in addition to a general group. We selected care partners who supported youth with varying intensity of support needs. We used rapid qualitative inquiry methods to extract key points from answers to semistructured interview questions. Delays in diagnosis and transition processes, and placement on wait lists resulted in significant obstacles to successful transitions. Parents assumed a dominant role by coordinating services, navigating systems and identifying opportunities for community participation, and providing direct supports. There was an overarching need for inclusion of autistic people in transitions research and consideration of cultural differences in priorities and values. Participants prioritized investigation of variation in transitions among autistic youth with intersecting identities, navigation support (eg, peer mentors), efficacy of services and supports (eg, transition and employment services), differences in available services by location, and problems within specific benefits programs. Research should focus on understanding population-level factors of system performance on outcomes and support needs, service delivery among marginalized groups, and transformation of complex service ecosystems.

¡Iniciando! la Adultez, a bilingual treatment program for Latino, autistic young adults and their Spanish-speaking parents: a pilot study

Objectives Latino young adults with autism spectrum disorder (ASD) face many challenges during the transition to adulthood, particularly regarding executive functioning (EF) and mental health symptom management. Latinos with ASD are particularly underserved, with existing supports often neglecting these critical areas. The study aims to evaluate a culturally and linguistically tailored intervention to better support Latino young adults by improving their adaptive functioning to enhance social outcomes and quality of life. Methods The culturally adapted and translated intervention, called ¡Iniciando! la Adultez, is a 12-week therapy program based on an evidence-based treatment (Launching! to Adulthood). The present study involved young adults with ASD (n = 26) and their Spanish-speaking parents (n = 38). Participants completed measures at baseline, mid-treatment, and post-treatment. Results The ¡Iniciando! la Adultez program led to significant improvements in social domains (e.g. cognition, motivation), and improvements in adaptive functioning, EF, quality of life, self-efficacy, and emotion regulation. Parental stress and caregiver burden, however, did not show significant changes. Conclusions Tailored, holistic interventions like ¡Iniciando! la Adultez are useful for supporting autistic young adults. These programs effectively address critical gaps in EF and mental health management, especially for Latino individuals, promoting better outcomes during the transition to adulthood.

Understanding Depression in Autism: The Role of Subjective Perception and Anterior Cingulate Cortex Volume.

The prevalence of depression is elevated in individuals with autism spectrum disorder (ASD) compared to the general population, yet the reasons for this disparity remain unclear. While social deficits central to ASD may contribute to depression, it is uncertain whether social interaction behavior themselves or individuals' introspection about their social behaviors are more impactful. Although the anterior cingulate cortex (ACC) and amygdala are frequently implicated in ASD, depression, and social functioning, it is unknown if these regions explain differences between ASD adults with and without co-occurring depression. The present study contrasted observed vs. subjective perception of autism symptoms and social performances assessed with both standardized measures and a lab task, in 65 sex-balanced (52.24% male) autistic young adults. We also quantified ACC and amygdala volume with 7-Tesla structural neuroimaging to examine correlations with depression and social functioning. We found that ASD individuals with depression exhibited differences in subjective evaluations including heightened self-awareness of ASD symptoms, lower subjective satisfaction with social relations, and less perceived affiliation during the social interaction task, yet no differences in corresponding observed measures, compared to those without depression. Larger ACC volume was related to depression, greater self-awareness of ASD symptoms, and worse subjective satisfaction with social interactions. In contrast, amygdala volume, despite its association with clinician-rated ASD symptoms, was not related to depression. Due to the cross-sectional nature of our study, we cannot determine the directionality of the observed relationships. Additionally, we included only individuals with an IQ over 60 to ensure participants could complete the social task, which excluded many on the autism spectrum. We also utilized self-reported depression indices instead of clinically diagnosed depression, which may limit the comprehensiveness of the findings. Our approach highlights the unique role of subjective perception of autism symptoms and social interactions, beyond the observable manifestation of social interaction in ASD, in contributing to depression, with the ACC playing a crucial role. These findings imply possible heterogeneity of ASD concerning co-occurring depression. Using neuroimaging, we were able to demarcate depressive phenotypes co-occurring alongside autistic phenotypes.

Lived Experiences and Perceptions of Autistic Young Adults Participating in Employment Readiness Skills Training.

This study aimed to examine the experiences and perceptions of participants engaged in an employment readiness program, Employment Preparation And Skills Support (EPASS), which is a manualized group-based training program designed to improve employment readiness among autistic young adults. A qualitative descriptive design was utilized to generate thick descriptions through semi-structured interviews with 22 transition-age autistic individuals (Mage = 20; 6 females; 16 males). Thematic analysis was employed to understand the experiences and career outcomes of transition-age autistic individuals pre- and post-participation in the EPASS program. Five main themes were identified: (1) More Negative Than Positive Employment-related Experiences; (2) Insight about Training Needs despite Hesitation to Participate; (3) Improved Perception and Confidence of Employment readiness through Experiential Learning; (4) Emerging Career Goals and Plans in Future Application of Knowledge and Skills; and (5) Learning Preference for More Interactive and Practice Experience. Participants reported a better understanding of job preparation skills, work-related social skills and interview etiquette. They also reported that what they learned in EPASS helped them improve their skills and confidence in obtaining and maintaining employment. Overall, participants expressed satisfaction with participating in EPASS and anticipated potential long-term impacts on their employability. This study sheds light on the training needs for transition-age autistic individuals and informs future employment readiness program development. Future studies should focus on collaborating with stakeholders to address training gaps and support needs that foster improved employment outcomes for this population.

Participation in Social and Leisure Activities After High School for Autistic Young Adults

The transition out of high school brings a myriad of changes including shifts in contexts that impact social and community participation. Previous research indicates that this transition results in disparate social and communication outcomes for autistic young adults compared to their peers. This study includes 170 young adults with autism who participated in follow-up data collection after graduating from U.S. high schools that had participated in a large intervention study. We gathered data from autistic young adults and their parents on social and leisure activity participation, satisfaction, and barriers. We examined data descriptively and looked at differences between sub-groups and changes over time. Results suggest that most autistic young adults are engaged in social activities. There are some differences based on high school programming but no significant differences across gender sub-groups. Research and practice implications are discussed.

Interests, Plans, and Hopes for Life After High School From Autistic Young Adults’ Perspectives

Obtaining the perspectives of autistic young adults is critical for planning educational and service delivery systems focused on the preparation for a high life quality after high school. The perspective and voice of autistic young adults who participated in the Center on Secondary Education for Students with Autism (CSESA) multi-site follow-up study conducted across three states (North Carolina, Wisconsin, and California) are described. Participants who exited high school or were enrolled in a district transition program responded to short-answer items on a Young Adult Questionnaire and Interview ( n = 148) and completed the Adolescent and Young Adult Activity Card Sort (Berg, 2015; n = 150) to address research questions about their current interests, future plans, and perceived barriers to fulfilling future plans using descriptive statistics and coding of interview responses. The young adults report current engagement in leisure activities, and 79% seek a job change and the opportunity to date and engage in a long-term relationship.

"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.

Socially Embedded Nature of Sensory Experiences in Daily Life for Autistic Young Adults

Abstract Date Presented 03/22/24 This qualitative study explored autistic young adults’ sensory experiences. Findings suggest that sensory experiences are notably intertwined with social contexts and have important implications for OT practice with this population. Primary Author and Speaker: Sharada Krishnan Contributing Authors: Tessa Madar, Ellen Cohn, Gael Orsmond

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

The effectiveness of group interpersonal synchrony in young autistic adults' work environment: A mixed methods RCT study protocol.

Few autistic adults are able to integrate successfully into the world of work given their difficulties adapting to the social and stressful aspects of work environments. Interpersonal synchrony, when two or more individuals share body movements or sensations, is a powerful force that consolidates human groups while promoting the ability to self-regulate and cooperate with others. The abilities to self-regulate and cooperate are crucial for maintaining a calm and productive work environment. This study protocol outlines research that aims to assess the effects of group interpersonal synchrony on prosociality and work-related stress of young autistic adults in their work environment. This mixed-methods randomized controlled trial will investigate two movement-based group synchronous and non-synchronous intervention conditions. The sample will be composed of young adults enrolled in an innovative Israeli program designed to integrate cognitively-abled 18- to 25-year-old autistic adults into the Israeli army work force. The movement-based intervention sessions will take place in groups of 10-14 participants, once a week for 10 weeks. Questionnaires, behavioral collaborative tasks and semi-structured interviews will be conducted. Quantitative data will be collected for each participant at three points of time: before and after the intervention period, and 17 weeks after the end of the intervention. Qualitative data will be collected after the intervention period in interviews with the participants. Little is known about interventions that promote successful integration into social and stressful work environments. The findings are likely to shed new light on the use of group interpersonal synchrony in autistic individuals at work. NCT05846308.

Sex differences in self-harm and suicide in young autistic adults.

Both suicide and self-harm are disproportionately common in autistic people. Sex differences in risk of self-harm and suicide are observed in the general population, but findings are mixed for autistic people. Self-cutting may be a particularly risky self-harm behaviour for suicide in autistic people. We aimed to explore sex differences and differences in method of self-harm in the association between self-harm and suicide in autistic and non-autistic adolescents and young adults. We used a total population register of 2.8 million Swedish residents. Participants were followed from age 12 until December 2021 for medical treatment because of self-harm, and death from suicide. We used Cox proportional hazard regression models to calculate hazard ratios (HRs) and 95% confidence intervals (CIs) for risk of death from suicide following self-harm, and Relative Excessive Risk due to Interaction (RERI) to explore the interaction between self-harm and autism in females and males. We identified 85,143 autistic individuals (31,288 female; 53,855 male) and 2,628,382 non-autistic individuals (1,286,481 female; 1,341,901 male) aged 12-37 years. Incidence of suicide following self-harm was higher in autistic males (incidence per 100,000 risk-years = 169.0 [95% CI 135.1, 211.3]) than females (125.4 [99.4, 158.3]). The relative risk was higher for autistic females (HR 26.1 [95% CI 20.2, 33.7]) than autistic males (12.5 [9.9, 15.8]). An additive effect of both autism and self-harm was observed in both females (RERI = 9.8) and males (2.0). Autistic individuals who self-harmed through cutting were at greatest risk of death from suicide (HR 25.1 [17.9, 35.2]), compared to other methods. Autistic males and females are at increased risk of death from suicide following severe self-harm, particularly self-cutting.

Affective Contact in Autism: A Phenomenological Study of the Emotional Experiences of Autistic Adults.

Since the first descriptions of autism, difficulties with affective contact (e.g., interpersonal exchanges of feelings between individuals) have been considered a common feature of autism spectrum disorder, and these difficulties frequently manifest in occupational therapy interventions. To (1) explore how autistic young adults describe their emotions and (2) suggest ways to improve the affective contact between autistic clients and their therapists. Virtual focus group interviews. Online (Qualtrics) survey and Zoom focus groups. Autistic adults (N = 24) who met the following inclusion criteria: self-reported diagnosis of autism spectrum disorder or Asperger syndrome, age 18-35 yr, able to understand English, and able to participate in a focus group or individual interview using verbal or written communication. Two themes were noted and are presented in this article: (1) Autistic people experience complex emotions and (2) autistic people's emotions are often (mis)measured and (mis)understood. The findings indicate that autistic people experience diverse, complex, and intense emotions and that these are connected to occupation. This suggests that occupational therapists must be attuned to the emotional dimension of occupation when working with autistic clients and that autistic clients may benefit from the use of embodied language to reference their emotions. Occupational therapists can help autistic clients recognize their bodily changes when experiencing emotions and to better identify and regulate their emotions. The results also show that there were many cases nonautistic people misinterpreted the emotions of autistic people on the basis of their facial expressions or words. Plain-Language Summary: This article provides information about the emotional experiences of autistic people. The study found that autistic people experience complex emotions and that those emotions are often misinterpreted or misunderstood. The author provides information on how occupational therapists can use a neurodiversity-affirming and person-centered approach to support the emotional experiences of people in the autism community. Positionality Statement: In this article, identity-first language is used when referring to autistic adults. This deliberate choice aligns with the principles of the neurodiversity-affirming movement. Autistic self-advocates have indicated a preference for this style of language over person-first language. The author would also like to acknowledge their positionality. As both a neurodivergent researcher and a self-advocate for the disabled community, this style of language aligns with their own experiences of and beliefs about their disability.

Academic learning challenges and links to vocational outcomes in young autistic adults.

Finding a job can be hard for autistic adults. No studies have been completed that look into whether having difficulties learning and troubles finding a job are related in this population. The current study did so by evaluating the Learning Needs Screening Tool, a measure of learning challenges used in vocational rehabilitation settings, or places meant to help people find work. A total of 401 autistic adults completed this study online. Specifically, the study evaluated (a) the characteristics of the Learning Needs Screening Tool, including the relationships between questions that ask about similar learning challenges, and (b) the ability of the measure to relate to real-world outcomes that are associated with learning difficulties, namely prior special education receipt and difficulties finding a job. Evaluation of the questions asked on the Learning Needs Screening Tool revealed that they were highly related and that learning difficulties fell into different categories. Fifty-six percent of the people in the study showed learning challenges on the measure. People who were identified as having learning difficulties on the Learning Needs Screening Tool had higher rates of receiving special education services in the past and lower rates of current employment. These results suggest that the Learning Needs Screening Tool may help to identify autistic job seekers who have learning difficulties and may have more challenges finding a job.

Autistic adults in China and the Netherlands: Proxy-reported community integration and life satisfaction.

Even though there are about 10 million Chinese autistic individuals, we know little about autistic adults in China. This study examined how well young autistic adults in China integrate into their communities (such as having a job, living independently and having friends) and how satisfied they are with their lives as reported by their caregivers. We compared them to autistic adults with similar characteristics (such as high support needs) from the Netherlands. We included 99 autistic adults in China and 109 in the Netherlands (18-30 years). In both countries, autistic adults were reported to have a hard time fitting into their communities. They often had no work, did not live on their own and had few close friends. Also, in both countries, caregivers reported that autistic adults felt low satisfaction with their life. Chinese adults were less satisfied with their life than Dutch adults, as indicated by their caregivers. This could be because of a lack of support for autistic adults in China, higher parental stress in Chinese caregivers, or general cross-country differences in happiness. Only in the Dutch group, younger compared with older adults fitted better into their communities, and adults without additional psychiatric conditions were reported to have higher life satisfaction. Country was a significant predictor of independent living only, with Dutch participants more likely living in care facilities than Chinese participants. In conclusion, our study shows that autistic adults with high support needs generally face similar challenges in both China and the Netherlands.