Improving parents' ability to advocate for services for youth with autism: A randomized clinical trial.
Julie Lounds Taylor, Leann Smith DaWalt, Meghan M Burke and 2 others
PMID 37551665WHAT IT FOUND
Parents who joined the 12-week ASSIST advocacy group gained more knowledge about adult services and felt more skilled advocating than those who only received written materials.
Parents with lower initial advocacy skills and less active coping styles benefited the most.
Key findings
01Participating in the ASSIST group led to higher scores on knowledge about adult services and perceived advocacy skills compared to the control group receiving only written materials.
02Parents who reported lower levels of active coping made greater gains in knowledge from the group program than those with high active coping, who benefited similarly from written materials alone.
03The effect of the intervention did not differ based on whether the youth had already left high school or the severity of the youth's intellectual disability or autism symptoms.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
Outcomes were based entirely on parent self-report, raising the possibility of expectancy bias since participants were not blinded to their assignment. The sample lacked diversity in terms of race, ethnicity, family income, and parental education, limiting generalizability to more diverse populations. The shift to online delivery due to the pandemic may have influenced results, particularly the marginal finding for empowerment. The study measured advocacy ability as a mechanism, not the final impact on service access or youth outcomes, which remain to be proven in future research.
Declared interests
The authors declared no conflicts of interest. The study was supported by the National Institute of Mental Health and the National Institute of Child Health and Human Development.
The easy way to misread this
Do not assume that providing written materials about adult services is equivalent to attending an advocacy workshop. The study shows that while highly active-coping parents may benefit similarly from both, parents with lower initial skills or less active coping styles gain significantly more from the interactive group program than from reading materials alone.