A commonly used screening test creates a gender gap that may hinder autism diagnosis and treatment for women and girls. Researchers who study autism have made an effort to include more women and girls in their studies in recent years. However, despite these efforts, a new study from MIT finds tha
Most studies of autism consistently enroll small numbers of female subjects or exclude them altogether, according to a new study from MIT.
Because of this lack of representation, it makes it more difficult to develop useful interventions or provide accurate diagnoses for girls and women, the researchers say. For research studies of autism, it is routine to use a screening test called the Autism Diagnostic Observation Schedule to determine eligibility for the study. This test, which assesses social interaction, repetitive behaviors, communication, and play, provides a quantitative score in each category, and only participants who reach certain scores qualify for inclusion in studies.
To see if this phenomenon was more widespread, the scientists examined six publicly available datasets, which include more than 40,000 adults who have been diagnosed as autistic. For some of these datasets, participants were screened with ADOS to determine their eligibility to participate in studies. However, for others, a “community diagnosis” — diagnosis from a doctor or other health care provider — was sufficient.
“The way we think about it is that the field evolved perhaps an implicit bias in how autism is defined, and it was driven disproportionately by analysis of males, and recruitment of males, and so on,” Gabrieli says. “So, the definition doesn’t fit as well, on average, with the different expression of autism that seems to be more common in females.”
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