Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations.
Autism transition research has grown but still under-includes autistic voices and equity-focused interventions—fund and design studies that fix both.
01Research in Context
What this study did
The Autism Transitions Research Project team gathered 31 studies published between 2017 and 2022. They asked one question: what do we really know about helping autistic teens move into adult life?
They coded each paper for who was studied, what service was tried, and whether equity or autistic voices were included.
What they found
The field has grown. More studies now describe teen and family traits. Few look at whether services are fair across race, income, or gender.
Only a handful let autistic people help design or judge the work. Biggest blank spots: studies that link schools, health, and community data together.
How this fits with other research
Donahoe et al. (2000) first warned that autism services had system and cost holes. Vassos et al. (2023) show those same holes still exist, but now we have 31 newer papers mapping them.
Hamama et al. (2021) surveyed doctors and found most skip basic healthcare hand-off steps. The new review agrees and adds that we also lack studies on housing, college, and jobs.
Lineberry et al. (2023) saw that less than a large share of UK autistic adults get any follow-up after diagnosis. Vassos et al. (2023) extend that point: transition teens are equally under-served because research money rarely targets equity or autistic input.
Why it matters
If you write transition goals, you already see kids slip between school, medical, and adult agencies. This review tells us the evidence base is thin on multi-sector plans, equity checks, and autistic-led design. Use that gap as leverage: ask funders for projects that track hand-offs across agencies, record race and income data, and include autistic students as co-researchers. Small pilot with mixed data sets plus teen advisors can meet both the equity and voice gaps flagged here.
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02At a glance
03Original abstract
Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants.
Autism research : official journal of the International Society for Autism Research, 2023 · doi:10.1002/aur.2890