Exclusion of females in autism research: Empirical evidence for a "leaky" recruitment-to-research pipeline.
Anila M D'Mello, Isabelle R Frosch, Cindy E Li and 2 others
PMID 36054081WHAT IT FOUND
Autistic females with a community diagnosis scored lower on ADOS social-communication measures and were excluded from research more often than males: 50% versus 19%.
ADOS-based datasets had far fewer females than community-diagnosis datasets.
Key findings
01Females with community-diagnosed autism had lower ADOS Communication and Reciprocal Social Interaction scores than males.
02After ADOS confirmation, 50% of community-diagnosed females were excluded from research participation, compared with 19% of community-diagnosed males.
03Datasets using ADOS to confirm autism had much lower female proportions than datasets using community diagnosis: ABIDE I 7.8:1 and ABIDE II 7.3:1 versus SPARK 1.7:1.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study used an existing MIT database, so it could not confirm how, when, or by whom each community diagnosis was made. It only examined ADOS Module 4 results in verbally fluent participants aged 16 years or older, so it does not show whether the same exclusion pattern occurs in non-speaking, minimally verbal, or cognitively impaired people. The comparison datasets differed in how they characterized co-occurring medical and psychiatric conditions and in how strictly ADOS cut-offs were applied. The analysis used binary sex categories, so it may not capture gender-based differences, including those affecting nonbinary and transgender individuals. The paper cannot show why females scored lower on ADOS social-communication measures; possible explanations such as camouflaging or examiner bias are discussed but were not directly tested. It did not test whether ADOS-based exclusion affects clinical diagnosis or treatment outcomes; it reports research participation patterns.
Declared interests
The supplied text names the National Institute of Mental Health as funder and does not provide an author conflict-of-interest declaration.
The easy way to misread this
Do not conclude that autistic females are less impaired or that the ADOS should replace clinical judgment. The study only shows that, among people already diagnosed in the community, ADOS cut-offs excluded more females than males from research participation.