Barriers to service and unmet need among autistic adolescents and young adults.
Late autism diagnosis and burned-out parents are early warning signs that teens and young adults will struggle to get services.
01Research in Context
What this study did
A team asked 174 caregivers about their autistic teens and young adults.
Kids were 16 to 30 years old.
The survey listed possible service barriers like long waits, no providers, or high cost.
What they found
Three red flags popped up.
Kids diagnosed later, kids whose parents felt high stress, and kids who no longer lived at home hit more walls when trying to get help.
More red flags meant more missed services.
How this fits with other research
Siklos et al. (2007) saw the same delay problem in Canada.
Families there waited three years and saw four doctors before anyone said "autism."
That long wait sets up the later-life barriers Wilson et al. (2023) now measure.
Luelmo et al. (2021) looked at autistic adults who said their health was slipping.
Those adults also needed more physical-health services but were not getting them.
Together the papers show one story: late or missed diagnosis leads to gaps that follow people into adulthood.
Why it matters
If you serve teens or young adults, check age at diagnosis and parent stress first.
These two quick numbers tell you who is most likely to fall through the cracks.
Add extra case-management for those families: help them apply for funding, find providers, and keep appointments.
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02At a glance
03Original abstract
Prior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families.
Autism : the international journal of research and practice, 2023 · doi:10.1177/13623613221150569