Self-determination in young adults with autism spectrum disorder.
Parents say young adults with ASD have open doors but weak choosing skills—especially when ID or severe symptoms are in the mix.
01Research in Context
What this study did
Green et al. (2020) asked the caregivers to rate the self-determination of young adults with autism. The adults averaged 20 years old and most had intellectual disability or severe autism traits.
The team used a 51-item parent survey that scores opportunity and capacity. Opportunity means chances to choose. Capacity means skill to choose wisely.
What they found
Caregivers said their sons and daughters had lots of chances at home but weak ability to act. The gap was biggest for youth with both autism and intellectual disability.
Overall scores landed in the middle, pulled down by the capacity items. In plain words, doors open, but feet stumble.
How this fits with other research
Cribb et al. (2019) seems to disagree. They interviewed autistic young adults who said, "I feel more in control." The clash is simple: self-view vs parent-view. Serena’s group also left out people with severe symptoms or ID, the very group C et al. flag as lowest.
Oredipe et al. (2023) adds a clue. Autistic university students who learned their diagnosis early report happier lives now. Pair that with C et al. and it looks like early truth-telling might build the capacity parents say is missing.
García-López et al. (2016) used the same parent-survey style and found the same pattern in a different domain: teens with ASD lag behind peers with Down syndrome on sex knowledge. Method repeats, message echoes—autism plus ID brings extra risk.
Why it matters
If you write self-determination goals, split them. First, keep creating chances to choose (high opportunity). Second, teach the steps: pause, weigh, decide, accept result. Start early, tell the child their diagnosis plainly, and add extra practice for youth with both autism and ID. Parents may underrate skill, so ask the client directly when possible and celebrate small wins out loud.
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02At a glance
03Original abstract
This study examined rates of and contributing factors to self-determination among young adults with autism spectrum disorder. Caregivers of young adults with autism spectrum disorder, 16-25 years, from five Autism Treatment Network sites completed surveys about their young adults' transition experiences including the American Institutes for Research Self-Determination measure. Data were analyzed using univariate and multivariate analysis. Caregivers (n = 479) reported their young adults with autism spectrum disorder as having moderate overall self-determination (x = 38; standard deviation = 9.04) with low capacity (x = 15.3; standard deviation = 5.67) and high opportunities at home (x = 23.1; standard deviation = 4.59). Young adults with autism spectrum disorder with intellectual disability or severe autism spectrum disorder symptomology experience significant disparities in overall self-determination compared to those without intellectual disability and less frequent symptom expression and severity. Barring severity indicators, there were few significant predictors of self-determination. Findings show a breakdown in self-determination skill-building. Young adults with autism spectrum disorder with intellectual disability or severe symptomology experienced significant disparities in self-determination. These findings show that current promotion of self-determination is not meeting the needs of young adults with autism spectrum disorder. Future interventions must identify what supports young adults with autism spectrum disorder need to capitalize on these opportunities to be independent and exert autonomy in their daily lives.
Autism : the international journal of research and practice, 2020 · doi:10.1177/1362361319877329