Bill addressing diagnosis gender disparity

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Rep. Ro Khanna (D-Calif.) introduced a bill Friday aimed at addressing the underdiagnosis and late diagnosis of autism in women and girls.

Along with GOP Reps. Claudia Tenney (N.Y.) and Brian Fitzpatrick (Pa.), Khanna introduced the Spectrum Act, which would authorize the director of the National Science Foundation to award grants for research into how autism is approached when it comes to women and girls.

In recent years, there has been a growing consensus that female patients go undiagnosed or are diagnosed with autism later in life due to differences in how it presents in comparison to male patients.

Girls may be more likely to “mask” the signs of autism, or adults in their life may be more likely to overlook symptoms.

“As we continue to advance our understanding of Autism Spectrum Disorder, it is crucial that the voices of those impacted are at the forefront,” Khanna said.

“Women’s experiences have been excluded from Autism research for too long and as a result, very little is known about the experiences of autism in women and girls. I’m proud to lead this bipartisan legislation to ensure that women and girls are included in critical research.”

In a statement, Khanna’s office noted that most autism studies enroll fewer women or no women at all, resulting in a limited understanding of how women and girls experience the condition.

The Spectrum Act would provide funding for research into “masking” in women and girls as well as the “double empathy problem” theory first proposed by British autism researcher Damian Milton.

His theory argues against the notion that autistic people have less empathy, and instead proposes people with autism and nonautistic people lack mutual understanding of each others’ experiences, making it difficult for them to empathize with each other.

Emma Preston, a senior policy adviser for Khanna, said her own “lived experiences” informed her pushing the lawmaker to look into the issue.

“I had asked him if we could pursue it last year; at the time, I was trying to better understand my own lived experiences and whether they fell under the umbrella of neurodivergence. I quickly realized that the existing research focused almost exclusively on boys, with hardly any variation in gender, race, or income,” Preston said.

Very little formal research exists about the internal experiences of women and girls, the different ways women and girls may learn to mask their experiences in response to different social expectations, and the different characteristics women and girls may express as a result.”