Preparing for the Transition to Adulthood in ASD:

Perceived Supports & Barriers among Parents of Diploma-Seeking Youth

Anne V. Kirby, PhD, OTR/L; Jenna M. Hoffman, OTS

∙S U P P O R T S∙
Percentage of Families that Identified
BACKGROUND With a Specific Support or Barrier
For adolescents with autism spectrum disorder (ASD) and their Support #1: Teen interests, positive experiences, and motivation Support #1 96%
parents, the period leading up to high school graduation is
• Teen interests in areas that could relate to a job; positive adult-like experiences; motivation for aspects of adult life
Support #2: Insider knowledge, connections, or exposure to models
Support #2 79%
critical in preparing for a successful transition into adulthood.
• Parent experience with schools or other service systems; connection with advocates or other experienced families Support #3 68%
During this time, some families encounter barriers as they try to Support #3: Access to and participation in teen programming
access resources and services for their children, while other • Teen engagement in activities that foster adult skills (disability-specific or general; e.g., internships, scouts, teams) Barrier #1 28%
families have a number of resources at their disposal. The goal Barrier #2 60%
of this research project was to identify common barriers and “…I’m a social worker and I’m in the
healthcare field and I help people find “He's doing some volunteer work right now; I'm trying to get him hooked up with a lot Barrier #3 84%
supports experienced by families of youth with ASD as they of different volunteer experiences so he knows what it’s like to be out in the world.”
navigate high school and prepare for adulthood.
resources, like I think I [have] access to
information and resources that a lot of (Support #3) Barrier #4 84%
people don’t know of and don’t think

DISCUSSION
about.” (Support #2)

METHODS “Well, both of them are just “…Looking at the autism website and looking at adults who
fascinated by technology and have made it, who live on their own….that gives me some
encouragement. So, I think he can [laughs]. It’s mother’s • Our analysis yielded 3 main supports and 4 main barriers
Data for this analysis was drawn from three mixed-methods mechanics. And just, I mean
fear, but I think he can because I’ve seen other adults on that parents face as they prepare to help their teenagers with
studies, conducted in two states. they just could be fantastic ASD transition into adulthood.
mechanical engineers. They’ve the website that have transitioned.” (Support #2)
• Initial qualitative semi-structured interviews with 25 parents got great ideas. They’re • Parents discussed factors that were related to the teens
of 27 diploma-seeking youth with ASD in their home or at creative.” (Support #1) themselves (such as teen interests or lack of interests,
motivation and lack of motivation), as well as factors that
the university.
were extrinsic to the child (resources, services, programs).
• A second qualitative interview was completed by phone with

∙B A R R I E R S∙
• All parents saw strengths in their children—which they
14 of the parents 9 months later.
identified as supports for a successful future.
• Interviews were audio-recorded and transcribed verbatim.
Barrier #1: Lack of access to resources • However, every parent also discussed challenges their child
• Qualitative analysis conducted to identify interviewees’
has that makes preparing for adulthood challenging. Some
perceived barriers and supports for transition. Analysis
• Services/resources inaccessible due to finances, location, availability, or eligibility
were specifically related to their ASD diagnosis (e.g., social
Barrier #2: Limited awareness of resources challenges) and others were more broad (e.g., lack of
process included coding, categorization, and theme
• Parents are unsure of what is available, what teen qualifies for, or how to access; navigating systems is challenging awareness about the “real world”).
development. Barrier #3: Mismatch between services and teen
• Available services aren’t the right fit; teen does not qualify for services that seem promising • Many parents were disappointed with opportunities for
supports and services to prepare for adulthood (for youth
Barrier #4: Teen disinterest, amotivation, and other challenges with ASD and specifically, for those expecting a diploma).
Participant Characteristics (n=25 families) • Unrealistic expectations for the future; lack of necessary qualities (e.g., motivation, independence, self-discipline)
Youth Age 15.6(1.2) years [range: 12-17] • Implications for Occupational Therapy (OT):
“Quite honestly, I don’t know of very many resources at all to help with this. And so most of • There are opportunities for OT to be more involved to
Youth Gender 25 males/2 females everything we do, I just kind of stumble onto, and start thinking, ‘Oh, that’s a problem, help support youth and families to prepare for adulthood
I: “Are there resources that...you maybe we should do something about this.’ And then pretty much start reinventing the
need, or that he would really • OT practitioners should help families navigate complex
Youth 21 White wheel, which is a whole ton of effort that probably doesn’t need to happen.” (Barrier #2)
benefit from that you don’t feel service systems and advocate for youth
Race/Ethnicity 4 Black
2 Hispanic/Latino exist or you don’t have access
to?” • More research is needed to develop and test interventions to
P: “The biggest one that I feel he better support families to prepare for adulthood (e.g.,
Parent Gender 1 male/24 females P: “Yeah he just doesn't, he doesn't see the
could really benefit from that I correlation.” “The middle school has MAPSS intervention currently being tested by our research
Household Income < $30,000 = 3 don’t have access to um, I: “Right, so are you talking about grades or been awful. No counselors, no group).
$30,000-$79,999 = 8 because my husband works PRN other decisions?” therapy. There’s nothing unless
≥ $80,000 = 14 and I’m a teacher…we’re like
paycheck to paycheck-type, um,
P: “Just other decisions. I mean grades,
spending money, um making commitments,
you’re in a wheelchair and non-
verbal and hand clapping…we REFERENCES
if we uh, I would like to get him um you know he, he's very impulsive and have got him to the point where
Hendricks, D.R. & Wehman, P. (2009). Transition from school to adulthood for youth with
in to some sort of counseling or doesn't think through what making a we graduated from the services autism spectrum disorders: Review and recommendations. Focus on Autism and
some sort of group.” (Barrier #1) commitment now means for the future.” that they’re willing to give.” Other Developmental Disabilities, 24(2), 77-88.
Taylor, J.L., & Seltzer, M.M. (2011). Employment and post-secondary educational activities
(Barrier #4) (Barrier #3) for young adults with autism spectrum disorders during the transition to adulthood.
Journal of Autism and Developmental Disorders, 41, 566-574.

UNIVERSITY OF UTAH || DEPARTMENT OF OCCUPATIONAL AND RECREATIONAL THERAPIES. We thank our funders (SSO:USA, College of Health, Consortium for Families and Health Research) as well as the families who shared their stories with us.