"You think it's hard now … It gets much harder for our children": Youth with autism and their caregiver's perspectives of health care transition services.
Autistic teens and parents feel abandoned during health-care transfer, but parent activation and early info sharing can soften the drop.
01Research in Context
What this study did
The team talked with autistic teens and their parents about switching from child doctors to adult doctors. They used open-ended questions so families could tell the full story.
The interviews happened while the youth were still in high school or just after. No one tested a new program; they simply recorded real-life experiences.
What they found
Families said the move felt like falling off a cliff. They lost trusted nurses and gained doctors who knew little about autism.
Parents and teens felt anxious, confused, and alone. One mom warned, "You think it's hard now... It gets much harder for our children."
How this fits with other research
Goulardins et al. (2013) heard the same worry from parents of youth with profound ID. Both studies show poor prep years before Schaaf et al. (2015), so the problem is not new.
Ruble et al. (2019) adds hope: when parents stay active and team up with teachers, students with autism reach more post-school goals. The pain Schaaf et al. (2015) found can be eased by the parent power Ruble et al. (2019) measured.
Schaaf et al. (2015) looks at health hand-offs while Waldron et al. (2023) looks at school hand-offs. Together they reveal the whole transition bridge is shaky, not just one side.
Why it matters
You can add a single page to the IEP or treatment plan that lists autism-specific health needs. Send it to the new adult provider before the first visit. That tiny step gives the next doctor a head start and keeps the family from feeling dropped.
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02At a glance
03Original abstract
Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n = 13) and their caregivers (n = 19) and used thematic analysis strategies to identify key themes. Parents' discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers' lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers' role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder.
Autism : the international journal of research and practice, 2015 · doi:10.1177/1362361314558279