Adapting an Advocacy Services Intervention for Latinx Families of Transition-aged Youth With Autism Spectrum Disorder

NCT06207149 | Completed Results

• 1 other identifier: 1R03MH129757-01A1
• Study Type: interventional
• Target: 48
• Locations: 1 country
• Sites: 1

Brief Summary

When youth with autism spectrum disorder (ASD) transition from school to adult services, they fall off a "service cliff." To increase access to services, the investigators developed the ASSIST program, which teaches parents how to advocate for adult services on behalf of youth with ASD. In a pilot randomized controlled trial (RCT: R34 MH104428), treatment group (versus control) participants demonstrated significantly improved knowledge of adult services, advocacy, and empowerment. Sons/daughters of treatment group participants had increased access to services. For advocacy services interventions like ASSIST to be equitable, they need to reach families who are at greatest risk for service disparities. Latinx youth with ASD are one such underserved population. Relative to White youth, Latinx youth with ASD receive significantly fewer post-secondary education, health, and employment services and face worse post-school outcomes. In addition to the barriers which hinder service access for all families, Latinx families face unique barriers to service access (e.g., language, cultural differences, citizenship, discrimination) making them a marginalized population. In this project, the investigators are adapting the ASSIST curriculum and related measures for Latinx parents of transition-aged youth with ASD. Specifically, the investigators will leverage ASSIST data and data from Latinx, non-ASSIST parents to inform adaptations to the ASSIST curriculum. The investigators will also conduct pre-testing and a cross-cultural adaptation process to revise the ASSIST measures for Latinx families. The investigators will test the adapted ASSIST curriculum with a randomized controlled trial to determine its feasibility, acceptability and efficacy on intervention targets (knowledge, advocacy, and empowerment) and outcome of interest (service access). This project is aligned with NIMH priorities by examining services from adolescence to adulthood (PA-21-199) and by adapting a program to improve mental health services for underserved populations NIMH 2020 Strategic plan). It is also responsive to the Interagency Autism Coordinating Committee core value of "equity" in reducing disparities with respect to cultural backgrounds. Further, if successful, it will be the first intervention to directly address service disparities for Latinx families of youth with ASD who are transitioning to adulthood.

Conditions

Autism

Study Arms (2)

Intervention

EXPERIMENTAL

Participants will attend an advocacy program.

Behavioral: ASISTIR

Waitlist-Control Group

ACTIVE COMPARATOR

Participants will receive the written materials of the advocacy program. After completing the intervention group completes the advocacy program, the waitlist-control group participants will be able to participate in the advocacy program.

Behavioral: ASISTIR

Interventions

ASISTIR BEHAVIORAL

This will be a 24 hour advocacy program focused on adult disability services.

Intervention; Waitlist-Control Group

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• over the age of 18,
• identify as Latinx,
• have a child with autism who is over the age of 12,
• speak Spanish, and
• reside in Illinois.

You may not qualify if:

• Must understand Spanish

Sponsors & Collaborators

• Vanderbilt University: lead

Study Sites (1)

University of Illinois at Urbana-Champaign

Champaign, Illinois, 61820, United States

Location

Related Publications (1)

• Burke MM, Ramos-Torres S, Espinosa GH, Hincapie AL, Aleman-Tovar J, Perez R, Puente C. Testing an Advocacy Program to Improve Service Access Among Latino Families of Autistic Youth: A Randomized Controlled Trial. Autism Res. 2025 Aug;18(8):1714-1724. doi: 10.1002/aur.70068. Epub 2025 Jun 21.

  PMID: 40542546 DERIVED

MeSH Terms

Conditions

Autistic Disorder

Condition Hierarchy (Ancestors)

Autism Spectrum Disorder; Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: NONE
• Purpose: HEALTH SERVICES RESEARCH
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor, Special Education

Study Record Dates

• First Submitted: July 21, 2023
• First Posted: January 16, 2024
• Study Start: August 20, 2022
• Primary Completion: May 15, 2024
• Study Completion: May 15, 2024
• Last Updated: July 1, 2026
• Results First Posted: October 30, 2024

Record last verified: 2026-06

Data Sharing

• IPD Sharing: Will share

Locations

US (1)