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The Current Landscape and Gaps in Research and Practice in Autism and Transition: Perspectives from Stakeholders

Alice Kuo, MD, PhD, Tara Crapnell, OTD, OTR/L, Kristy Anderson, MSW, Paul Shattuck, PhD

METHODS

OBJECTIVES

BACKGROUND

CONCLUSIONS

ACKNOWLEDGEMENTS: This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number, UA6MC27364, and title, Health Care Transitions Research Network for Youth and Young Adults with Autism Spectrum Disorders. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

The transition to adulthood is a vulnerable time for youth on the autism spectrum

Individuals on the autism spectrum experience high rates of disconnectedness in adulthood

To identify challenges and needs of youth on the autism spectrum as they transition to adulthood.

30-60 minute semi-structured phone interviews Key stakeholders from the Health Care Transitions Research

Network (HCT-RN) for Youth and Young Adults contact list (n=13)

Analysis by two independent coders with an inductive approach to identify themes

Table 1. Key Stakeholders Relationship to Individuals on the Autism Spectrum (n=13)

Self-advocate 1 (8%)

Parent or family member 5 (31%)

Researcher 5 (39%)

Service Provider 3 (23%)

Stakeholders with multiple roles 5 (39%)

I. WE NEED TO KNOW MORE: 10 (80%) of participants discussed the lack of evidence and need for more research to better understand and support youth with autism

THEMES

II. THE EARLIER THE BETTER: 12 (92%) discussed that transition planning and preparation should start earlier in regards to goals, functional skill development, job exploration, and community experiences. Sub-themes included the fact that not one size fits all and that plans should be strength-based and individualized to fit personal needs and interests.

We dont have good evidence-base about what works about transition, what are the most important elements to connecting people of where they need to go, what are the services that are

most effective, and what models work for people, and what types of programs we should be creating.

there should be integration with the adult system with the school system, and they should be working hand in glove long

before a child leaves school.

III. SOCIAL SUPPORTS ARE IMPORTANT AT ALL LEVELS: All interviewees recognized the need for the following: Families, providers, and communities need to be sufficiently

educated in order to support youth on the spectrum. Increase connectedness of youth and their families by

creating community networks.

Transition begins at birthit should be a period of experimenting and seeing what fits, and I think we need to give transition-aged youth with autism those same opportunities to

explore

Community becomes increasingly important as individuals on the autism spectrum transition into adulthood.

To meet the varying levels of need and overcome multi-sector challenges, future research and practice should aim to improve support at all levels (individual, social, and community).

THEMES IV. COMMUNITIES SHOULD VALUE THE STRENGTHS OF EACH OF ITS MEMBERS: All interviewees recognized the need to: Improve community receptivity, increase its presence, and

expand options. Increase flexibility, coordination, and integration between

the childhood and adult systems.

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