Evidence from the Autism Transitions Research Project (2017–2022): Capstone review and services research recommendations

Author:

Roux Anne M.1ORCID,Shea Lindsay L.1ORCID,Steinberg Hillary1,Rast Jessica E.1,Anderson Kristy A.2,Hotez Emily3,Rosenau Kashia3,Kuo Alice3,Assing‐Murray Evva4,Shattuck Paul T.5

Affiliation:

1. A. J. Drexel Autism Institute Drexel University Philadelphia Pennsylvania USA

2. School of Social Work Florida State University Tallahassee Florida USA

3. Department of Medicine University of California Los Angeles Los Angeles California USA

4. Maternal and Child Health Bureau Health Resources and Services Administration Rockville Maryland USA

5. Mathematica Policy Research Princeton New Jersey USA

Abstract

AbstractFew 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.

Funder

Health Resources and Services Administration

Publisher

Wiley

Subject

Genetics (clinical),Neurology (clinical),General Neuroscience

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