Co-designing a novel service delivery pathway to increase access to autism identification and care within a non-profit community organization serving culturally and linguistically diverse families.
Shana M Attar, Hannah Benavidez, Carol Gicheru and 3 others
PMID 40346799WHAT IT FOUND
Community providers and caregivers shaped a new autism care pathway through five priorities: respecting diversity, caregiver choice, accessibility, reducing stigma, and feasibility.
These insights guided the creation of a culturally adapted workbook and training tutorial for non-specialist providers.
Key findings
01The co-design process identified five key features for an effective pathway: respecting diversity, prioritizing caregiver agency, increasing accessibility, minimizing stigma, and promoting feasibility.
02These design features informed the creation of a modular, culturally sensitive workbook and a web-based tutorial to support non-specialist providers in using it with families.
03Strategies to respect diversity included framing developmental milestones around caregiver expectations rather than standardized timelines, and using language that distinguishes cultural norms from pathology.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The study did not collect formal data on participants' experiences with the co-design process. Participants were limited to eight language groups from Africa and the Middle East, restricting generalizability to all culturally and linguistically diverse families. Caregivers were required to have some English fluency, potentially excluding perspectives of those with less language proficiency. No autistic self-advocates were included in the co-design group. The effectiveness and feasibility of the resulting workbook and tutorial have not yet been rigorously tested.
Declared interests
The study was supported by NIH funding. The authors declared no other conflicts of interest.
The easy way to misread this
Do not assume the resulting workbook and tutorial are effective or feasible for widespread use. The study only describes the design process and participant feedback; the interventions have not yet been tested in a pilot or clinical trial.