Autism & Developmental

Everyday life of young adults with intellectual disabilities: inclusionary and exclusionary processes among young adults of parents with intellectual disability.

Starke (2013) · Intellectual and developmental disabilities 2013
★ The Verdict

Young adults with ID whose parents also have ID feel content yet remain socially isolated.

✓ Read this if BCBAs writing social-skills or community-inclusion goals for transition-age clients.
✗ Skip if Clinicians focused only on early-childhood or severe behavior reduction.

01Research in Context

01

What this study did

Starke (2013) talked with young Swedish adults who have intellectual disability.

All of their parents also have intellectual disability.

The researcher asked how they feel about friends, free time, and family.

02

What they found

The young adults said they are happy with the friends and family they have.

Still, they feel left out of wider social life.

Their friend list is short and mostly paid staff or relatives.

03

How this fits with other research

Bouck et al. (2016) later asked adults with and without ID in Portugal to rate quality of life.

They found big gaps, with health as the top shared driver.

The Swedish study adds nuance: even those who say they are "satisfied" still face exclusion.

Lancioni et al. (2011) surveyed Dutch adults and saw the same pattern: many have daytime activities but almost no contact with non-disabled peers.

Together, the three studies show satisfaction and exclusion can coexist.

04

Why it matters

You may hear clients say they are "happy" during person-centered planning.

Probe deeper. Ask who they hang out with on weekends and who is not paid to be there.

Use that answer to write goals that grow unpaid friendships, not just fill day slots.

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Add one question to your intake: "Name three people you see weekly who don’t get paid to be with you"—then build goals from any blank spaces.

02At a glance

Intervention
not applicable
Design
qualitative
Sample size
10
Population
intellectual disability
Finding
mixed

03Original abstract

Ten young adults with an intellectual disability whose parents, too, have an intellectual disability were interviewed and completed questionnaires for this exploratory study aimed at charting their experiences of everyday life. Most of the participants reported high life satisfaction, especially with the domains of friends, leisure time, and family, and considered their families as a resource for their empowerment and development of resilience. The study participants' informal networks were composed of only a few individuals who, moreover, were mostly of dissimilar age and also included support professionals. The participants typically described themselves as excluded from others, an experience that was articulated most conspicuously in their narratives about the special schools they were attending.

Intellectual and developmental disabilities, 2013 · doi:10.1352/1934-9556-51.3.164