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Development of a support program for autistic adults and their families

February 1, 2023 - January 31, 2025

This study, conducted by researchers at the University of Washington, aims to redesign and pilot test an evidence-based family intervention (RUBI) for autism and behaviors that interfere with quality of life and self-determination in partnership with autistic adults, their caregivers, and their providers to ensure that the redesigned intervention is appropriate and effective for this community. We believe this study is important because autistic adults and their families are currently the most underserved population of autistic individuals. Additionally, the Autistic Self Advocacy Network recently called for increased work to help autistic adults with challenging behaviors and their supporters. We hope that this study can help make progress toward meeting this need for the autistic community.

What are the goals of the study?

In partnership with autistic individuals, their caregivers, and their providers, we hope to redesign an intervention for families of adults with autism and behaviors that interfere with their quality of life. We also hope to test the redesign intervention with ten families to ensure the redesigned intervention is feasible and appropriate for families.

What will happen during the visit or online?

There are two phases to this study:

For Phase 1, we are looking to recruit autistic adults, caregivers of autistic adults, and providers who service autistic adults. Focus group members will be asked to review materials about an established intervention for families of autistic children and answer questions in a 2 hour focus group regarding the applicability of the intervention for adults and suggestions for improving fit with families of autistic adults. Participants in Phase 1 will also be asked to fill out short surveys about the intervention during the focus groups. Participants will be compensated $100 for participating in focus groups.

For Phase 2, we are looking to recruit autistic adults and their caregivers to pilot the redesigned intervention. Families will be asked to attend 8-10 weeks of intervention (1 hour/week) at a time that is convenient for them. They will also be asked to fill out surveys about themselves and the intervention 4 times throughout the intervention. Participants will each be compensated $25 for each set of surveys.

How will this help families?

Currently, autistic adults and their families report having an extremely hard time accessing services. We hope that by redesigning a short term, evidence-based intervention for autistic adults with behaviors that interfere with their quality of life and their families, we can help expand access to this service and give autistic adults and their families tools to improve self-determination and quality of life.

Eligibility Criteria

Phase 1 (Redesign Focus Groups) eligibility criteria:

(1) Age ≥ 18 years; (2) Confirmed diagnosis of autism spectrum disorder (ASD) from a community provider OR caregiver of an adult with a confirmed diagnosis of ASD living in the home OR licensed clinician (psychologist, social worker, board certified behavior analyst, mental health counselor, etc.) who currently serves or has previously served autistic adults with challenging behaviors or their family members.

Phase 2 (Pilot Testing) eligibility criteria:

(1) Age ≥ 18 years; (2) Confirmed diagnosis of ASD from a community provider and Social Communication Question total score > 15; (3) Adult and caregiver willing to attend sessions and parental proficiency in spoken and written English language.

View the study flyer here.

Contact Information

Carly Perryman: carlynp@uw.edu

Research Study Website
UW READi Lab

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