Practices of Self-Advocacy and Their Implications From the Perspectives of Transition-Age, Young Adults With Intellectual and/or Developmental Disabilities.
Young adults with IDD count everyday self-care as self-advocacy, and programs must secure family buy-in or risk pushback.
01Research in Context
What this study did
The team talked with 23 college students who have autism or intellectual disability. All were in a transition program at a large U.S. university.
They used long interviews and small groups. Students told stories about times they spoke up for themselves.
What they found
Students said self-advocacy is more than asking for help. It includes brushing teeth, doing laundry, and catching the bus alone.
They felt proud when they did these tasks. They also said parents sometimes push back, calling it "too risky" or "not needed".
How this fits with other research
Golubović et al. (2013) found parents and teens with ID often rate quality of life differently. The new study shows the same gap: parents doubt the very skills students call self-advocacy.
Palikara et al. (2022) saw that school plans rarely include the child’s own words. Whaling et al. (2025) give the fix: ask the young adult first, then write the goal.
Perry et al. (2024) tracked parents who felt strong after advocacy training. The current paper flips the lens: young adults want the mic, not just mom or dad.
Why it matters
If you write transition goals, start with the student’s definition of independence. Build lessons around daily routines they value, like cooking or texting a friend. Plan a family meeting early so parents hear the plan from the student, not you. This cuts later conflict and keeps the student in the driver’s seat.
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02At a glance
03Original abstract
PURPOSE: The purpose of the study is to characterize the practices of self-advocacy, as well as their impact on family life, among transition-age adults with intellectual and/or developmental disabilities (IDD; i.e., autism, intellectual disability) enrolled in an inclusive post-secondary education (IPSE) program. Researchers centered young adult voices, which in academic discourse have been traditionally marginalized in favor of centering voices of parents. METHODS: Focus groups with participants (n = 29) elicited perspectives on programmatic elements, practices of self-advocacy, and student-parent relationships. RESULTS: Findings highlighted student perspectives that: (1) caring for yourself and speaking up/standing up for yourself are both practices of self-advocacy; (2) understanding their own roles and context, self-confidence, and the openness of the person they were self-advocating to may serve as facilitators or barriers to self-advocacy; (3) parents have a role in introducing and reinforcing self-advocacy skills for young adults; and (4) relationships with their families changed during involvement in the IPSE program, with some reporting use of self-advocacy skills as a point of conflict with their parents. CONCLUSION: Young adults with IDD report unique practices of self-advocacy such that they include caring for oneself as self-advocacy. Centering their voices may help inform how to best support their transition to independence and facilitate self-advocacy on small (e.g., with family and peers) and large (e.g., with organizations and policy) scales.
Journal of autism and developmental disorders, 2025 · doi:10.3233/JVR-181001