Challenges and Opportunities in Transitioning Autistic Individuals Into Adulthood

Area of Science:

• Autism Spectrum Disorder Research
• Developmental Psychology
• Sociology of Health

Background:

• Over 1.2 million autistic youth will transition to adulthood in the next decade.
• The socioecological context of this transition is dynamic and requires updated research.
• Current research needs to reflect the lived experiences of autistic young adults, their care partners, and professionals.

Purpose of the Study:

• To produce an updated research agenda for the transition to adulthood for autistic youth.
• To incorporate the perspectives of autistic young adults, care partners, and professionals.
• To address critical gaps in understanding and supporting autistic youth during this life stage.

Main Methods:

• Conducted 9 focus groups with 59 participants (autistic young adults, care partners, professionals).
• Stratified young adult groups by racial/ethnic minority, LGBTQIA+ identities, and nonspeaking status.
• Employed rapid qualitative inquiry methods to analyze semistructured interview data.

Main Results:

• Significant obstacles to transition include diagnosis delays, process inefficiencies, and waitlists.
• Care partners play a crucial role in coordinating services, navigating systems, and providing support.
• Key research priorities include autistic inclusion, cultural considerations, support for intersecting identities, navigation assistance, service efficacy, and benefit program issues.

Conclusions:

• Future research must examine population-level system performance and outcomes.
• Investigate service delivery models, particularly for marginalized autistic groups.
• Focus on transforming complex service ecosystems to better support autistic individuals.