Development of a Family-Based Transition Planning Program for Culturally-Diverse Youth on the Autism Spectrum

Development of a Family-Based Transition Planning Program for Culturally-Diverse Youth on the Autism Spectrum

Families FORWARD: Development of a Family-Based Transition Planning Program for Culturally-Diverse Youth on the Autism Spectrum

The goal of this clinical study is to develop a community-based program to support family members of transition-aged youth on the autism spectrum to help them plan for the future. The main aims of the study are: To develop the Families FORWARD program To conduct proof-of-concept testing of the Families FORWARD program Participants will complete surveys before and after participating in the program and will participate in exit interviews at the end of the program.

The Families FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) program aims to increase family members' active planning for the transition to adulthood in the context of autism. The program is designed to enable flexible delivery for families of youth who are diverse across autism features, co-occurring conditions, service needs, cultural values and preferences, and readiness to engage in planning. The program will be delivered collaboratively with community organizations that support individuals on the autism spectrum and/or their families. The current project aims to conduct proof-of-concept testing with a culturally-diverse sample of families of transition-aged youth on the autism spectrum. Parents / primary caregivers will participate in 6-7 individual, personalized sessions that incorporate aspects of skill-building (communication, goal-setting, problem-solving, systems navigation), education about services, and motivational interviewing. Youth will be invited to participate in 3 of the sessions along with their parent / primary caregiver. Participants will complete surveys before and after participating in the program and will participate in exit interviews at the end of the program. The investigators will assess indicators of acceptability, feasibility, and improvement on proposed mediators and outcomes.

This is a single-arm trial of a new transition planning program for families of youth on the autism spectrum. The program includes six or seven bi-weekly parent sessions, three of which are optional for the youth to attend. The program will be facilitated by community-based service providers who work with transition-aged youth on the autism spectrum and/or their families.

Families FORWARD aims to engage families in planning for adulthood earlier and more actively. Program skills include communication and problem-solving; guided practice in setting realistic goals, breaking down goals into incremental action steps, and problem-solving barriers to goal attainment; repeated engagement in future-oriented communication; and training on how to navigate transition-related and adult services. Parents/caregivers will participate in six or seven telehealth sessions (60-75 minutes each). Youth on the autism spectrum will have the option of participating in up to three program sessions to increase collaborative planning within the family. Families will identify and work toward individualized transition planning goals that may fall within any area of planning or functioning (e.g., housing, education, guardianship).

The parents (and youth, when applicable) will complete the Program Acceptability scale that will assess acceptability, appropriateness, and feasibility. Item scores range from 0 to 4. Higher scores are associated with higher perceptions of intervention acceptability, appropriateness, and feasibility.

The Transition Planning Activity Measure will be used to assess parent's readiness for their youth's transition to adulthood. It is a parent proxy questionnaire. Item scores range from 1 to 4. Higher scores are associated with higher transition readiness.

Inclusion Criteria: Family Inclusion Criteria Parents or primary caregivers of transition-aged youth on the autism spectrum: Have one or more child(ren) on the autism spectrum who is/are ages 14-21 years old Identify as the parent, legal guardian, and/or primary caregiver of the youth Speak English fluently Reside in Massachusetts Youth on the autism spectrum: Have an autism diagnosis OR identify as autistic Age 14-21 Have ability to communicate verbally or in written format in English Reside in Massachusetts Exclusion Criteria: none