Challenges and Opportunities in Transitioning Autistic Individuals Into Adulthood.

BACKGROUND AND OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations.

Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants.