Improving parents' ability to advocate for services for youth with autism: A randomized clinical trial.

Researchers tested a 12-week program called ASSIST to help parents better advocate for their teenage or young adult children with autism (ages 16-26). 185 parents participated, with some receiving the full program and others just written materials. Parents who completed ASSIST showed better knowledge about adult services and felt more confident in their advocacy skills compared to those who only received materials. The program worked especially well for parents who started with less knowledge or confidence.

This randomized controlled trial evaluated the ASSIST program, a 12-week group-based intervention designed to improve parents' advocacy skills for transition-aged youth with autism (ages 16-26). 185 parents across three U.S. states were randomized to either the ASSIST program or a control condition receiving written materials only. The study measured parent advocacy ability through knowledge of adult services and perceived advocacy skills. Results showed significant improvements in the treatment group compared to controls, with greater benefits observed for parents who initially had lower knowledge, advocacy skills, and less active coping styles. The intervention demonstrated effectiveness in enhancing parent advocacy capabilities during the critical transition to adulthood period.

The ASSIST program shows promise as an evidence-based intervention to strengthen parent advocacy during the critical transition to adulthood. Clinicians should consider referring parents, particularly those with limited advocacy experience, to structured advocacy training programs to enhance service access for transition-aged youth with autism.

The study only measured immediate post-intervention outcomes and did not assess whether improved parent advocacy skills actually led to better service access or transition outcomes for youth. Long-term follow-up and service utilization data were not reported in this analysis.

Youth with autism face challenges accessing services as they transition to adulthood. Improving parents' ability to advocate for services on behalf of their youth may be an effective way to improve service access and ultimately transition outcomes in this group. In this study, we tested whether participating in an advocacy intervention improved parents' ability to advocate for services for their transition-aged youth with autism. One hundred and eighty-five parents of youth with autism ages 16-26, recruited across three states in the U.S., were randomized to one of two experimental conditions.

The treatment condition received the ASSIST program, a 12-week (24-h) group-based intervention. The control condition received the same written materials as the treatment condition. Primary outcomes for this report-parent advocacy ability-were collected at baseline (prior to randomization) and post-test (immediately after the treatment group finished the 12-week program) by survey. After taking ASSIST, the treatment condition had greater gains than controls in knowledge of adult services (B = -1.62, CI = -2.33 to -0.90) and perceived advocacy skills (B = -0.19, CI = -0.33 to -0.04).

Participants who had less knowledge, lower perceived advocacy skills, and less active coping styles at baseline had the greatest treatment gains. Findings suggest that ASSIST is effective in improving parent advocacy ability and may be most beneficial for parents who experience greater challenges advocating for their son/daughter with autism. Future research will examine whether gains in parent advocacy ability leads to improvements in service access and post-school outcomes for transition-age youth with autism.