The role of parental advocacy in addressing service disparities for transition-aged youth on the autism spectrum.
Chung Eun Lee, Meghan M Burke, Leann Smith DaWalt and 2 others
PMID 34841922WHAT IT FOUND
Youth with autism whose parents reported more advocacy activities received more services, even after accounting for income, race, and the youth's abilities.
This links parental effort to service access but does not prove that teaching advocacy causes families to get more support.
Key findings
01Parental advocacy activities accounted for an additional 10.6% of the variance in the number of services received after controlling for demographic and functioning variables.
02The most common advocacy activities were searching the internet for agencies and talking with other parents, while system-level advocacy was least common.
03Youth who were enrolled in high school, had lower adaptive behavior scores, or lived in Illinois or Wisconsin received more services.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The study is cross-sectional, so it cannot determine if advocacy leads to more services or if families with more services advocate more. The sample was primarily White, well-educated, and well-resourced, so findings may not apply to families from underrepresented racial-ethnic groups or lower socioeconomic backgrounds. Participants were recruited for an ongoing RCT on parent advocacy, which may have attracted families already interested in advocacy, potentially skewing the results compared to the general population. The study only measured the number of services, not their quality, appropriateness, or whether unmet needs were addressed. Combining all non-White/Latinx participants into one category may have obscured specific differences in advocacy or service access within those groups.
Declared interests
The study was supported by the National Institute of Health (Extramural). No other conflicts of interest are explicitly declared in the provided text.
The easy way to misread this
Do not conclude that teaching parents advocacy skills will increase their child's service receipt. This study only shows an association in a cross-sectional design; it does not prove that advocacy causes increased access, and the sample was already highly educated and resourced.