Approximately 5.4 million adults in the United States (1 in 45) are believed to have
autism spectrum disorder (ASD), but there is a lack of services available to support them
in reaching their full potential. Although typically conceptualized as a childhood
disorder, ASD-related service needs persist into adulthood. The core social and
communication impairments of ASD, reported difficulties with change, and a high rate of
co-occurring mental health conditions often result in limited participation in major life
areas that are determinants of health, including social and community participation,
employment, housing, and transportation. The transition to adulthood is not only
associated with developmental challenges, but also a "services cliff" whereby supports
and services that were previously available through the education system are no longer
available. Peer-delivered interventions have emerged as a potent, evidence-based modality
for enhancing outcomes among other clinical populations, such as adults with serious
mental illnesses, with effectiveness in enhancing social networks, empowering
participants, reducing the use of inpatient services, and increasing life satisfaction.
At present, there is limited research on the effectiveness of autistic-led peer support
interventions, especially those that target broad aspects of community functioning. The
proposed study seeks to refine, manualize, and test a pilot autistic peer support program
aimed at supporting community participation among autistic young adults, with the goal of
preparing it for large-scale testing and future dissemination and sustainability. The
first aim of this proposal is to enhance the structure of a pilot autistic-peer delivered
intervention (Community Autism Peer Specialists, or CAPS) that is currently in use as a
Medicaid-reimbursed service in Philadelphia. This will include developing a manual and
fidelity tool to facilitate evaluation and systematic implementation. The second and
third aims are to conduct a hybrid type 1 effectiveness-implementation randomized
controlled trial with 40 young autistic adults to test the feasibility and acceptability
of the intervention and research procedures, while also examining proposed target
mechanisms of action (e.g., self-efficacy, working alliance, perceived social support)
and clinical outcomes such as community participation, loneliness, and resilience. This
work will gather additional evidence and implementation information to support a
fully-powered R01- funded clinical trial. The proposed efforts will involve substantial
engagement of a diverse group of autistic adults in all phases along with multiple
community partners, including a Medicaid payer. The project has tremendous potential to
expand service options for autistic adults and is uniquely poised to have broad, scalable
impact.