Autistic Voices Needed: A.J. Drexel Autism Institute Awarded Grant for Innovative Autistic Support Services Research

Autistic adults often report a need for supports or services due to a “services cliff,” which occurs when supports previously accessed through the education system are no longer available. Peer-delivered interventions – supports delivered by autistic adults to other autistic adults – present a new opportunity for autistic adults to share their skills and experiences navigating their communities with other autistic adults.

The Policy, Analytics and Community Research Program at Drexel University’s A.J. Drexel Autism Institute and Temple University Collaborative on Community Inclusion collaborated to receive funding, through a National Institute of Mental Health grant, to work with autistic adults to enhance autistic-delivered peer supports and expand them in Philadelphia. The project is titled “The effectiveness of an autistic-delivered peer-support intervention for autistic adults: Community Autism Peer Specialist (CAPS) program.”

“Peer support has the unique quality of being a professional service that is personal in nature,” said Aliki Koumenis, project coordinator at the Policy, Analytics, and Community Research Program at the Autism Institute.  “As someone who has been on both sides of giving and receiving this type of support, I have experienced the shared connection, empathy and empowerment that comes from connecting with someone else who can relate. There is nothing more powerful and inspiring than the experience of two people navigating a challenge together, knowing they are not alone.”

“It is incredibly exciting to partner on such an innovative study that has the potential to substantially expand supports focused on community functioning that are available to autistic adults,” added Mark Salzer, PhD, director of the Temple University Collaborative on Community Inclusion.

The study works with autistic adults to refine and create standard procedures and test an autistic peer support program model aimed at increasing community participation among autistic young adults, with the goal of preparing the program for large-scale testing and implementation across communities. This research builds upon an existing pilot autistic-peer delivered intervention – CAPS – that is a Medicaid-reimbursed service in Philadelphia. 

An advisory board consisting of autistic individuals, CAPS graduates, peer specialists, family members and the research team will guide all aspects of the research. Two part-time CAPS peer specialists will be hired through Northeast Treatment Center (NET) from a pool of autistic adults who have completed the CAPS training. NET, a non-profit agency that provides a continuum of trauma informed behavioral health and social services, will host the study.

This is one of the first studies of autistic-delivered peer support services, with a focus on promoting personalized goals and preferences set by autistic individuals, rather than goals assigned to them.

“This is also a potentially innovative funding strategy that employs autistic adults, where we know employment outcomes must improve,” said Lindsay Shea, DrPH, leader of the Policy, Analytics and Community research program in the Autism Institute and the project’s director. “We don’t need to start from scratch. Peer support services have been used in other areas, such as mental health and for veterans, for decades. Our work with autistic adults will pave the way to expanding additional service options and employment opportunities that we often hear from autistic adults are desperately needed.”

The research team is currently recruiting autistic individuals, 18-30 years old and living in Philadelphia, who are Medicaid eligible for the study and reflect the racial and ethnic diversity of Philadelphia. Forty autistic adults will be randomly assigned to either receive the CAPS service or service as usual. Participants will be asked to complete surveys and will be compensated for their time. Individuals interested in potentially participating in this study or assisting in recruitment can visit phillycaps.org for more information.

This research is a collaboration between Drexel, Temple University, Community Behavioral Health - Philadelphia’s Behavioral Health Managed Care Organization, and NorthEast Treatment Center. Additional support is being provided from many city and state agencies, including the Department of Behavioral Health and Intellectual disAbility Services (DBHIDS), who has contributed reinvestment funding, the Bureau of Supports for Autism and Special Populations (BSASP), who has contributed to the adult curriculum development, and the Philadelphia Autism Project.