Exploring the Involvement of Autistic Youth in Decision Making About Services.
Ask transition-aged autistic youth what services they want, write it down, and watch crises drop.
01Research in Context
What this study did
Andrews et al. (2024) talked with autistic teens and young adults. They asked how much say the youth get when teams pick therapy, respite, or school supports.
The chats were open-ended. Kids told stories about IEP meetings, behavior plans, and adult services planning.
What they found
Most youth said adults leave them out. They only got invited when the topic was classes or class aides.
When they did speak up, staff often nodded but did not write their ideas into the plan.
How this fits with other research
Stofleth et al. (2022) show that autistic adults land in the ER more than other adults. The adults in that review were once the same teens M et al. talked to.
Rebbettes et al. (2025) tried the opposite path. They let autistic youth co-design a sports training pack. The kids felt heard and the pack worked. Their study shows youth can lead when given the chance.
Iannuzzi et al. (2022) counted ER visits for preventable problems in autistic teens. The visits were high. M et al. give one reason: teens were never asked what help they actually wanted, so small needs grew into crises.
The papers do not clash. They trace a line: exclude youth → plans miss needs → ER use climbs.
Why it matters
You can break that line. Invite your client to the next IEP or BSP meeting. Ask what goals feel useful and what help feels annoying. Write the answers in the plan. This one step costs no money and may keep the kid out of the hospital later.
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02At a glance
03Original abstract
Although services are critical for many transition-aged youth, it is unclear the extent to which autistic youth participate in decisions about their services. By exploring the perceptions of autistic youth about their role in services, interventions can be developed to improve their participation. In this study, we interviewed 43 transition-aged youth with autism to explore their involvement in decisions about services. Most youth reported not being involved in decision making about the types and modalities of disability services. When youth were involved in decisions, the services were often related to education. Although youth reported that their parents typically spearheaded decisions about services, youth also reported that their parents often listened to their input. Implications for research, policy, and practice are discussed.
Intellectual and developmental disabilities, 2024 · doi:10.1352/1934-9556-62.4.323