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

Abstract

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.