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Why are so many autistic women overlooked or misdiagnosed?

Posted on Wednesday, 03 June 2020, in Autism, Mental Health

Why are so many autistic women overlooked or misdiagnosed

 

Since autism was first diagnosed in the 1940s, males have and continue to be, more frequently diagnosed as autistic than females. Lots of theories attempt to explain the difference, including biological reasons, problematic diagnostic measures, and environmental factors. However, no single factor has been proven to account for the gender difference and it's likely that multiple factors are at play.

Neurodevelopmental Specialist Hannah Hayward explains that women also tend to be more adept at camouflaging or masking traits typically connected to autism.

“Quite a large proportion of women are diagnosed later in life because they aren’t presenting as you would expect autistic people to present. The women I work with are often diagnosed because their children are being diagnosed and they recognise similar traits in themselves. Others come after experiencing mental health issues such as anxiety, depression, self-harming or eating disorders.”

 

Being diagnosed with ASD helps women to understand themselves

 

Males are diagnosed at an early age after showing autism-associated traits like having an unusually strong interest in one specific thing, such as trains, dinosaurs, science or engineering. Autistic girls can also have these obsessive tendencies, but their interests are often more related to people - it could be a celebrity or a friend or a family member. Generally, society doesn't consider this type of focus as unusual behaviour for a girl. 

Many autistic females also use online resources such as YouTube to observe and mimic how people talk, their facial expressions, and even how they walk.

“You might get a schoolgirl who looks like she hangs out with the popular crowd, but really she’s mimicking the behaviours of people she sees as successful; the clothing, the accents, the way they move. Parents and teachers might think they are socialising, but on closer inspection, we find these girls are on the peripheries of the group and may not actually be forming strong connections with individuals,” explains Hannah.

 

Mimicry leads autistic women to be overlooked

 

Social ability 

There tends to be a societal expectation that girls are social creatures, meaning many autistic girls have to work extra hard to fit in. And it’s these learned social skills that help them to function in social and professional situations.

Many will prepare in advance by rehearsing possible conversations or even going over scripted responses in their heads. Noises, smells and unfamiliar foods mean sensory processing may also be affected, making the experience even more stressful.

To anyone on the outside, there's no problem. But to an autistic female, the act can be a highly exhausting experience, and it’s common for autistic women to crave time alone. According to Hannah, “Some people require a brain reset. What might appear to be anti-social behaviour is in fact crucial downtime to help them recover and make sense of the world again.” 

 

Social ability can cause autistic women to overlooked

 

Misdiagnosis

Because many women adopt such effective strategies from an early age, they make their way into adulthood without a diagnosis. As a result, they can be susceptible to symptoms of mental health conditions including anxiety and depression.

Many undiagnosed women can find themselves self-medicating with drugs and alcohol or engaging in some self-harming behaviours. There's also a higher instance of autistic (diagnosed or undiagnosed) women in abusive relationships, as Hannah explains: “If your self-worth is low, you might feel misunderstood. All you want is to be loved and valued and that immediately makes you vulnerable. Autistic people don't always pick up on social cues that might help identify potentially threatening people or situations, and this can have a catastrophic impact on their lives.”

Of course, being diagnosed as autistic doesn't automatically make someones' life easier, but understanding more about who we are and how we interact with the world can give us the opportunity to find strategies that improve how our lives function. The sooner you understand certain behaviours, the quicker you’ll be able to access suitable therapies and connect with people who will be able to support you.

There's still some way to go, but the diagnostic methods are always improving, helping us to recognise the signs of autism earlier. We must continue to inform the professional services and community and empower individuals – male and female – to recognise the signs and feel comfortable accessing the right support. 

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Hannah Hayward

Hannah Hayward Neurodevelopmental Specialist Msc, Bsc

For almost two decades, Hannah has been working in the field of autism spectrum and co-occurring conditions, and is undertaking a PhD exploring the sex differences in the clinical presentation of autistic individuals including subtle presentations.  Hannah works with young people and adults delivering autism understanding workshops and psycho-education sessions targeted for autistic women and girls.

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