Why women with autism and ADHD are underdiagnosed
BY Rosemary Richings
1st Nov 2023 Wellbeing
4 min read
Modern medicine has let down many neurodivergent women, who are struggling to get a diagnosis for autism, ADHD, dyslexia and other life-altering conditions
Examples of neurodivergence include autism, ADHD, Tourette’s, dyslexia and dyspraxia. Despite over 15 per cent of the UK population being neurodivergent, women are underdiagnosed.
Many neurodivergent women are misdiagnosed with conditions such as bipolar disorder, depression and anxiety, or are diagnosed late in life.
Male bias in neurodivergence diagnoses
The Daisy Chain Project is a community initiative that runs supportive programming for neurodivergent children, teenagers and adults. Their programming taught them that women who conduct neurodiversity research motivated by their feelings of difference may struggle to find the information they can relate to.
Clementine Schouteden is the founder of the neurodivergent-friendly clothing line Rare Birds. According to Clementine, diagnosis tools have been historically designed with men in mind.
Professor Nancy Doyle works for Genius Within, an organisation fostering the inclusion of people with neurological conditions in society. She demonstrated the biases in neurodiversity research by sharing the flaws of ADHD research.
"The effectiveness of ADHD medication varies during different stages of puberty, menstruation and menopause"
Underfunded research focuses on more male than female research subjects, which leads to critical information being overlooked.
According to Professor Doyle, “To understand reactions for females, we need to measure the impact daily across several months. With males, we can do a shorter time, so research councils are less willing to invest.”
One key reason is that the effectiveness of ADHD medication varies during different stages of puberty, menstruation and menopause, making lengthier research necessary for female research subjects. With more in-depth analysis, researchers can capture the impact of the entire hormonal cycle.
Unaddressed research bias forces large chunks of the neurodivergent population to tread water without access to relevant resources.
Stereotypes override actual symptoms
Dyslexic entrepreneur and educator Onyinye Udokporo attended an underserved community's primary school. With a lack of funding and no knowledge of dyslexia, her parents didn’t know where to get help, and her teachers didn’t have the budget to accommodate her dyslexia.
When Emily Katy, an #ActuallyAutistic content creator, was a patient in a mental health unit, her doctor thought that her autistic traits were social anxiety.
After her hospitalisation, Emily’s family had to pay for a private autism assessment for her to get a formal autism diagnosis.
Doctors didn’t think she had ADHD due to good grades and no issues with concentration, which meant she couldn’t get a diagnosis until age 21.
"Her doctor thought that her autistic traits were social anxiety"
Autistic blogger Jess Owen was diagnosed at 25, and her autistic traits have never resembled a frequently discussed autism stereotype: Sheldon Cooper of The Big Bang Theory.
Sheldon is an autistic coded character who loves maths and science, is emotionless and doesn’t understand how to interact with people.
As a non-stereotypical autistic person, everyone struggled to see past her interests “being stories and films she shared with friends”. She also masked heavily, which Jess describes as a “coping mechanism where neurodivergent people copy neurotypical behaviour”.
Masking behaviour to hide neurodivergent traits
Neurodivergent women typically exhibit masking behaviour more often than men, so women’s symptoms are more likely to be undetected. Masking hides neurodivergent traits, and it isn’t a light switch that people can turn on and off.
Jess feared that her instinct to mask would interfere with her ability to get a formal diagnosis. Practitioners saw past Jess’s mask and formally diagnosed her, allowing Jess to replace her feelings of doubt with self-awareness.
Doubt is often peer pressure-based, but self-awareness of what you need to thrive in your environment is a powerful weapon against it. Doubt can be triggered by internalised ableism.
Internalised ableism refers to judgements latched onto someone’s perceived capability in school, work, and relationships. It’s also applied to skills women are socially pressured to excel at, such as cooking, cleaning and caregiving.
The perceived capability of neurodivergent women imposes arbitrary measurements of symptom severity. Women are either deemed too neurodivergent to access the same opportunities as their peers or not neurodivergent enough for others to support them.
Neurodivergent women can thrive
When Onyinye was a student, many people doubted her academic ability, which pressured her to prove herself. This escalated into overworking and then burnout.
Once this proved to be an issue, her parents helped her spot signs of burnout, focus on her strengths, and boost her confidence.
Neurodivergent women can thrive when their environment feels safe enough to unmask and seek support, which requires the widespread availability of neurodiversity education.
Schouteden suggests equipping teachers with the knowledge to recognise neurodivergence in girls and running workplace seminars to tackle stereotypes.
"Neurodivergent women can thrive when their environment feels safe enough to unmask and seek support"
A lot can be learned about positive neurodiversity education from Daisy Chain’s approach to learning from their programme participants.
“We work on being as flexible as possible and promoting understanding and acceptance," she says. "We learn from the people we work with, ask for feedback, listen to their views, and encourage others to do the same.”
Many neurodivergent women grow up in environments with narrow views of what neurodivergence should look like. If we don’t address the stereotypes, it will be difficult for many women to thrive.
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