Journal article
Challenges and Opportunities in Transitioning Autistic Individuals Into Adulthood
Pediatrics (Evanston), v 154(5), e2024067195
16 Oct 2024
PMID: 39410915
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
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.
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Details
- Title
- Challenges and Opportunities in Transitioning Autistic Individuals Into Adulthood
- Creators
- Anne M Roux - Drexel UniversityKyle Chvasta - Drexel UniversityKiley J McLean - Drexel UniversityMeghan Carey - Drexel UniversityGeorgina Perez Liz - A.J. Drexel Autism Institute, Drexel University, Philadelphia, PennsylvaniaLiza Tomczuk - Drexel UniversityKristina Lopez - Arizona State UniversityEvva Assing-Murray - Maternal and Child Health Bureau, Health Resources & Services Administration, Rockville, MarylandPaul T Shattuck - Mathematica Policy ResearchLindsay L Shea - Drexel University
- Publication Details
- Pediatrics (Evanston), v 154(5), e2024067195
- Publisher
- AMER ACAD PEDIATRICS
- Number of pages
- 13
- Grant note
- Augusta UniversityNational Alliance to Advance Adolescent Health
We thank the critical input from each focus group participant. We additionally thank the following project advisers for their critical review of this manuscript: Teal Benevides, PhD, MS, OTR/L, Augusta University; Peggy McManus, MHS, The National Alliance to Advance Adolescent Health.
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- A.J. Drexel Autism Institute
- Web of Science ID
- WOS:001373927000017
- Scopus ID
- 2-s2.0-85208452828
- Other Identifier
- 991021929987704721
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- Collaboration types
- Industry collaboration
- Domestic collaboration
- Web of Science research areas
- Pediatrics