Feb 21, 2023, 5:00 am UTC
Invisible Women: When gender bias seeps into neuroscience
At first glance, the human brain — 3 pounds of grayish jelly — looks unremarkable. But it contains billions of neurons connected in an intricate network and controls every single process in our body: thoughts, memories, emotions, touch, sight, and movement.
To probe, explore, and understand this complexity, clinicians and scientists have developed sensitive diagnostic and screening tools. These tools — which are detailed questionnaires designed to test social, language, and learning skills — are essential for monitoring, identifying, and diagnosing a range of neurodevelopmental conditions, such as autism and attention-deficit/hyperactivity disorder (ADHD).
Yet, when applied to women's brains, they often fail. Indeed, women face an uphill battle to get a diagnosis because the tools used by experts today are more accurate at identifying men with these conditions.
Why? Because an innately human tendency — bias — seeps into medicine and science, just as it does in so many other realms.
Women are under-researched
Throughout history, women's minds, bodies and experiences have been largely excluded from the realm of science, leading to enormous gaps in our knowledge of their health. In fact, it was only about 30 years ago that the U.S. federal government mandated that women and marginalized communities be included in clinical trials. This means most health research has focused on men, so when researchers set out to understand how neurodevelopmental conditions manifest and develop screening and diagnostic tools for them, they used men as a default.
Different sex, different symptoms
Take the "gold standard" autism diagnosis tool, which goes by the acronym ADOS. Research has shown it routinely misses girls with autism because they don't have the "core" traits associated with the condition, such as difficulties with social interaction and communication, and repetitive behaviors like hand-flapping, rocking, and fidgeting. These traits are based on findings from decades of research on boys and men and don't capture what autism looks like in girls. The same disparities appear along racial and ethnic lines, posing additional hurdles for people of color seeking care.
ADHD is no different. A growing number of women are sharing stories of being diagnosed in adulthood, partly because bias in medicine also influences who gets referred to an expert. Like autism, ADHD is still viewed as a "male condition." As a result, anxiety and hyperfocus in girls are often chalked up to perfectionism rather than features of the disorder.
Underdiagnosed, misdiagnosed, or missed
The tools we use to study the human brain fail women and racialized people by misunderstanding, misdiagnosing, or missing them altogether. This leaves girls and women asking themselves, "What's wrong with me?" They are also vulnerable to bullying. Worst of all, it prevents them from getting the support they need and the opportunity to develop coping skills early.
For autism, evidence is in the numbers:
- Girls are three to four times less likely than boys to be diagnosed with autism
- Black children are 19 percent less likely than their white peers to be diagnosed with autism
- The diagnostic process drags on for almost 6 months longer for children of color
- Only four out of 1400 autism studies in the past 20 years were female-only, compared to 434 that were male-only
Fighting for change
Including women's voices and experiences in brain research is the only path forward to equitable care. Fortunately, much-needed change is on its way. Gender bias in neuroscience is increasingly being brought to light, demanding clinicians and scientists do better to address it.
Moving the needle in the right direction are women with lived experience and their allies. Here are a few inspiring examples:
- A network of Dutch scientists, clinicians, and autistic people is helping parents, doctors, and therapists understand autism in girls and women.
- Non-profits, such as the Autistic Women and Nonbinary Network (AWN), are connecting autistic women so they can support each other.
- A community of women with ADHD shares inspiring stories of advocacy for empowerment.