Addressing the Gender Disparity in Autism Diagnosis

Representative Ro Khanna (D-Calif.) has introduced a bill, the Spectrum Act, aimed at reducing the underdiagnosis and late diagnosis of autism in women and girls. The bill is a significant step towards acknowledging the gender disparity in autism diagnosis and promoting more inclusive research.

The Problem of Underdiagnosis

Research has shown that male patients are diagnosed with autism at a rate four times higher than their female counterparts. This disparity has been attributed to differences in how autism presents in women and girls compared to men. Female patients may be more likely to “mask” the signs of autism, or adults in their life may be more likely to overlook symptoms.

The Importance of Inclusive Research

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

The Spectrum Act

The Spectrum Act 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. The bill 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. This theory argues against the notion that autistic people have less empathy and instead proposes that people with autism and non-autistic people lack mutual understanding of each other’s experiences, making it difficult for them to empathize with each other.

A Personal Connection to the Issue

Emma Preston, a senior policy adviser for Representative Khanna, has a personal connection to the issue. She had asked Representative Khanna to look into the issue after trying to better understand her own “lived experiences” and whether they fell under the umbrella of neurodivergence. Preston realized that the existing research focused almost exclusively on boys, with hardly any variation in gender, race, or income. She emphasized the need for more research into 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.

Conclusion

The Spectrum Act is a crucial step towards addressing the gender disparity in autism diagnosis. By providing funding for research into the experiences of women and girls, the bill aims to improve our understanding of autism and promote more inclusive diagnosis and treatment. Representative Khanna’s leadership on this issue is a testament to the importance of acknowledging the voices of those impacted by autism and promoting more equitable research.

FAQs

Q: Why is there a gender disparity in autism diagnosis?
A: Research has shown that male patients are diagnosed with autism at a rate four times higher than their female counterparts, which has been attributed to differences in how autism presents in women and girls compared to men.

Q: What is the “double empathy problem” theory?
A: The “double empathy problem” theory, first proposed by British autism researcher Damian Milton, argues that people with autism and non-autistic people lack mutual understanding of each other’s experiences, making it difficult for them to empathize with each other.

Q: What does the Spectrum Act aim to achieve?
A: The Spectrum Act aims to provide funding for research into the experiences of women and girls with autism, including how they may “mask” their symptoms and the different characteristics they may exhibit as a result.

Q: Why is inclusive research important?
A: Inclusive research is important because it acknowledges the voices of those impacted by autism and promotes a better understanding of the condition. By including women and girls in research, we can improve our understanding of autism and promote more equitable diagnosis and treatment.