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

BACKGROUND
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

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

METHODS
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%)

THEMES
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
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.
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.
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
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.

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.
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.

CONCLUSIONS
Community becomes increasingly important as individuals
on the autism spectrum transition into adulthood.
To meet the varying levels of need and overcome multisector challenges, future research and practice should aim
to improve support at all levels (individual, social, and
community).

Contact
10990 Wilshire Boulevard . Suite 900 . Los Angeles, CA 90024
Phone: (310) 312-9208
Email: AutismTransition@mednet.ucla.edu
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.