Quality of Life for Transition-Age Youth with Autism or Intellectual Disability.
Transition-age youth with autism or ID show markedly lower parent-reported quality of life, especially in social connectedness—target community involvement and character strengths to boost well-being.
01Research in Context
What this study did
Parents of 162 transition-age youth filled out a short quality-of-life survey. Half the youth had autism, half had intellectual disability, and all were 16-21 years old.
The team used the KIDSCREEN-27, a 27-item parent form that asks about mood, friends, school, and free time. They compared scores to same-age norms from the general population.
What they found
Parents rated their kids’ well-being below average in every area. The biggest gaps showed up in “Social Support and Peers” and “Autonomy.”
Youth with both autism and challenging behavior scored lowest. Autism alone predicted lower scores even after the researchers controlled for IQ and behavior problems.
How this fits with other research
McCauley et al. (2018) asked the same questions about younger children and saw the same pattern: autism plus ID hurts social quality of life more than ID alone.
Delgado-Lobete et al. (2020) widened the lens to the full lifespan (5-65 years) and still found autistic people scoring below norms, so the problem does not fade with age.
Berástegui et al. (2021) looked at the same transition-age group and noticed something tricky: parents and youth often disagree on quality-of-life ratings. The low scores in Libero et al. (2016) are parent views, so collecting self-ratings too is wise before writing goals.
Why it matters
Low parent-reported quality of life is a red flag for lonely, disengaged teens. Add goals for community participation, peer networks, and self-determination to the transition plan. Track both parent and youth views to be sure the plan is working.
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02At a glance
03Original abstract
We examined the subjective health and well-being of 389 transition-age youth with autism or intellectual disability using the parent proxy version of the KIDSCREEN-27. Parents reported well-being of youth with autism and youth with intellectual disability lower than a normative sample in the domains of Physical Well-being, Psychological Well-being, and Social Support and Peers. For both groups of young people, the lowest ratings were reported in Social Support and Peers. Higher ratings of well-being in one or more domains were predicted by minority status, youth character strengths, involvement in community activities, and religious faith. Challenging behaviors, autism, age, and speech as the primary mode of communication were predictive of lower ratings of well-being. We discuss implications for special educators and service providers and offer directions for future research.
Journal of autism and developmental disorders, 2016 · doi:10.1007/s10803-015-2563-x