Development and non-randomized pilot trial of Families FORWARD: a new program for families of autistic youth transitioning to adulthood.

Abstract

Objective: Autistic youth and their families describe transitioning to adulthood as overwhelming. Yet, there are few evidence-based, family focused transition programs broad enough to serve youths' wide range of autism-related and background characteristics. We report on the community-engaged development of Families FORWARD (Focusing On Relationships, Well-being, And Responsibility aheaD), a new family based, individualized transition planning program (Phase 1) and non-randomized pilot trial findings regarding acceptability, feasibility, and clinical promise (Phase 2).

Methods: Phase 1 involved qualitative interviews with autistic youth, parents/caregivers, and professionals (N = 31) regarding transition-related experiences, existing service gaps, and feedback on the Families FORWARD concept. In Phase 2, 14 families participated in a trial of Families FORWARD delivered remotely by community-based coaches. Families completed pre/post measures of program skills (family communication, knowledge), mechanistic targets (self-efficacy, stage of change), and outcomes (transition planning activities, perceived stress) and exit interviews. Feasibility and acceptability benchmarks were specified a priori. A community advisory board of racially and ethnically diverse autistic young adults, parents, and professionals guided the research.

Results: Phase 1 identified the need for flexible, skills-based, collaborative transition programs and highlighted the relevance of proposed program skills (family communication, collaborative goal-setting, problem solving, systems navigation). In Phase 2, all feasibility, acceptability, and clinical promise benchmarks were met. Exit interviews highlighted how family communication and structured goal-setting improved collaborative, youth-centered planning.

Conclusions: Across racial and ethnic backgrounds and autism characteristics, Families FORWARD shows promise for improving transition outcomes. Centering community input during program development likely increased relevance and feasibility.