As the world marked Autism Awareness Day on April 2nd a gap in autism diagnoses for women remains an issue.
by Rebecca Reilly
Despite being discovered in the 1940s, a severe gulf remains in the diagnosis of autism in women and girls. According to research women are far more likely to be misdiagnosed with other mental health conditions, and this is largely rooted in autism research.
“Diagnostic tools were largely developed and validated in predominantly male samples, so they are more sensitive to “male‑typical” autism presentations,” says Dr Sarah Kittel‑Schneider, Professor of Psychiatry at Friedrich‑Alexander‑Universität Erlangen‑Nürnberg.
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Generally indicated by continuing difficulties in social communication and interaction and restrictive or repetitive behavioural patterns, interests or sensory experiences, autism is a spectrum and traits vary.
“Autistic traits often look different in women,” explains Dr. Kittel-Schneider, who is also Clinical Director at the Department of Psychiatry and Psychotherapy at the University Hospital Erlangen.
“Girls and women may have intense but socially acceptable interests like celebrities, animals, and books, rather than “unusual” ones that trigger suspicion of autism […] Many autistic girls learn early to observe, copy and “script” social behaviour, so teachers and even clinicians see a shy, anxious, conscientious girl rather than someone struggling to understand the social world.”
This ability to mask often results in autistic women being misdiagnosed with a range of other mental health conditions.
“Autistic women are very often misdiagnosed with […] anxiety, depression, eating disorders, or personality disorders such as borderline personality disorder,” says Lisa O’ Neill, a master’s student specialising in autism research.
Lisa received her own autism diagnosis in her mid-forties.
“When you grow up feeling different but don’t understand why, and you’re constantly trying to adapt to a world that doesn’t quite make sense to you, that can be incredibly damaging over time. There can be chronic stress, burnout, sensory overwhelm, and a deep sense of not belonging. It’s no surprise that anxiety and depression develop in that context.”
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Lisa explains that professionals tend to focus on what’s visible and autism often gets missed.
“Many of us became very good at hiding or “masking” at a very young age […] to the world that looks like coping, but the reality is that it came with a huge cost to our mental health.”
“For many women, diagnosis only comes later in life, after years and years of struggling with feeling different, being misunderstood, misinterpreted and ultimately burnt-out with life. When a diagnosis does finally come it can bring such a profound re-understanding of our entire lives. For me it was life changing.”
“General anxiety disorder, manic depressive disorder, borderline personality disorder, issues with food control – these were some of the diagnoses I was given,” said Tara Walsh from Galway, who was diagnosed with autism at 38.
After starting a job as a technician Tara was in the midst of a breakdown without realising.
“I now know I feel sound like electricity in my body and have sensory processing disorder. The noise of the machines, wearing safety equipment and masks – it was over stimulating me to breaking point. I used to fantasize about shoving my hand into the grinder to stop the electricity. That job probably saved my life.”
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With two suicide attempts in her 20s, Tara had been dealing with anxiety and depression since she was 10.
“I used to self-harm and that provided temporary relief,” she explained.
But her situation came to a head one Monday evening and a conversation with her mother that finally shed some light on her neurodivergence.
“I was sitting on my laptop and felt this huge weight on me. I gripped the laptop so tight I bent the frame. I couldn’t move because I would have went to the medicine cabinet to do damage. I was talking to mom after about my anxiety and told her something I used to do when I’d get overwhelmed in the pub,” she said.
“I would get pressure in my chest, pains in my arms and darts of electricity from my neck to my fingers. I’d go into a cubicle, strip and put my back against the tiles. The cold of the tiles would shock me enough so I could catch my breath. I thought it was anxiety. It was regulation.”
She took this, along with four foolscap pages of other regulation and masking mechanisms she had developed to her therapist, who recommended she seek a diagnosis.
“I now know I’m not broken or stupid. I have so much grief for my younger self because I was vicious to her. We as women need to advocate for ourselves, do our research and follow our gut. The day you look in the mirror and don’t see a waste of space is the most beautiful feeling.”
With the world of psychology and psychiatry developing further research into autistic women, there is an expectation that diagnoses will improve over time.
“I think one thing that’s really important, and often still overlooked, is the need to actually listen to what autistic people have to say,” said Lisa O’ Neill.
“Most of the understanding around autism has come from the outside looking in. But the people who truly know what it feels like to live it every day are autistic people. We’re not just part of the conversation; we should be at the centre of it.”
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