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With rising numbers of women receiving autism diagnoses later in life, it begs the question— why are they flying under the radar for so long?
At our clinic, we spend so much of our time diagnosing women with autism and are faced with lots of young girls coming to us for private diagnosis.
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There’s an entire cohort of women that have been misdiagnosed — at the mild end, with low level anxiety and depression, but at the more extreme end, borderline personality disorder.
Why Are So Many Women Diagnosed Late?
Autism is understood as the ‘extreme male mind’— and as medical professionals, the tools and measures we use to diagnose are all created with men in mind.
As autism is defined as a ‘social communication disorder’, the tools and tests are designed to capture this deficit in social communication, such as lack of eye contact and being socially inappropriate, all of which an autistic male will struggle with.
Therefore the tools look for such symptoms and voila! A man with autism should get a diagnosis, easy peasy.
But for women, its a much more complex picture — due to many reasons such as nature/nurture/environment/culture, autistic women appear to have been able to LEARN how to ‘do’ social communication.
The female profile often lies under the radar of the usual tests. Although on the inside they may be struggling, on the outside they are able to ‘mask’ and ‘camouflage’ their neurodivergence.
The problem is, these are learned skills which don’t come naturally – so they are putting on a version of themselves away from their authentic selves, causing mental health issues.
The Emotional Toll Of Living With Autism As A Woman
Struggling with your identity, masking, camouflaging all leads to a heavy mental health load.
The biggest impact on women that are autistic is exhaustion, burnout and fatigue. In relation to camouflaging, and what camouflaging is— it’s the learned ability to fit in within your peers, to become ‘part of’ your peers.
That might be all day at work, in a relationship with a partner, or even with your children at the school gates, socialising with friends. If you’re doing that all day, you’re going to be really really tired. It’s going to be taking a lot of mental energy from you.
Autistic women often tell us in clinic that they if there was social occasion or a party that they have to go to, or for example a conference, that actually they would then spend the weekend in bed — completely unable to get up. This is because they’re just so tired mentally and physically as well. It takes its toll.
If you can’t access that rest and recuperation or have that restorative time because you are a parent, because you are not out and openly autistic, you’re having to just constantly keep going.
That’s going to take a mental toll on you, and you are much more likely to experience depression, anxiety — the types of things that women often get diagnosed with. So they go to the doctors and they say, ‘I just felt really anxious, really depressed, I’m really struggling’.
It’s renowned that emotionally dis-regulated autistic women have been given a diagnosis of personality disorder. That comes from struggling or being mistuned in relationships — despite your best efforts, you become quite emotionally dis-regulated around things.
This then gives you that diagnosis of a personality disorder, when actually if you aren’t that at all. It’s actually autism.
The flip side of this is if you have autism, you’re more likely to have a mental health issue. Lever & Geurts did a study in 2016 where they found that 79% of autistic adults had met criteria for a psychiatric disorder at least once in their life. Depression and anxiety were the most common.
What Needs To Be Done To Support Autistic Women?
While research is shifting, more needs to be done – specific studies and especially specific diagnostic tools for women need to be created.
There are many people that are severely impacted by their symptoms and we need to make sure that these women have access to proper psychological therapy to help them ultimately embrace themselves and thrive.
There are lots of people for whom this is more of a discovery than a diagnosis – an understanding of who they are and why they see things in the way they do.
It’s time for those of us working in healthcare to step up and admit we’ve got a problem with how neurodivergence is diagnosed.