Partnering With a Purpose: Promoting Equity and Justice for Black Children With Autism Spectrum Disorder.
Stephanie Castelin, Josselyn Okorodudu, Teresa Smith
PMID 39023854WHAT IT FOUND
Black caregivers of children with autism described safety fears, provider bias, jargon, fragmented services, and need for providers to respect family knowledge, coordinate care, and support parent mental health.
They proposed community-led navigation.
Key findings
01Caregivers linked autism-related behaviors and being Black to increased safety risk, including harmful interactions.
02Caregivers said providers often dismissed their expertise, used jargon, and encouraged medication they did not value.
03Caregivers proposed an autism doula program to provide culturally matched navigation and social-emotional support.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study was conducted in one community setting with caregivers recruited through a local advocacy group and clinical flyers. It reports experiences and proposed solutions, not tested outcomes. Some demographic information was missing. Experiences varied by family and county.
Declared interests
The authors declared no conflict of interest.
The easy way to misread this
Do not read the autism doula program as evidence it works. It was proposed by caregivers and endorsed by stakeholders, not tested in this study.