Neurodiversity in Women – International Women’s Day

Reference: Neurodiversity in Women – International Women’s Day | The McPin Foundation

To mark International Women’s Day, a McPin staff member, and three of her neurodivergent female colleagues, write about neurodiversity in women, mental health and the changes we are seeing in the world.

To mark International Women’s Day, I wanted to talk about neurodiversity in women and mental health.

In this blog, I’m primarily talking about autism and ADHD, sticking to topics where I have more knowledge of, and  – in the case of ADHD – personal experience of; although the neurodivergent umbrella spans far beyond these conditions and also includes dyspraxia, dyslexia, intellectual difficulties and Tourette’s.

Each subtype can come with its own challenges and stregnths, and can affect women in different ways to men.

Dyspraxia and traditional notions of what is considered feminine do not mix well. I am clumsy, lack grace and cannot do more than the simplest of ‘girly’ grooming tasks such as hair and make-up. 

My diagnosis in my late 20’s was a relief, but still leaves me at sea with societal expectations of femininity that don’t resonate, and that Is hard.

I love International Women’s Day as it shines a light on all forms of what it means to be female, and welcomes debate, discourse and difference”

McPin team member

How does neurodiversity relate to mental health? Although being neurodivergent isn’t a mental health issue itself, neurodivergent individuals have higher rates of mental health issues compared to their neurotypical counterparts.

Up to 80% of people with ADHD live with at least one other mental health issue, personality disorder or substance misuse disorder. Research also finds higher rates of mental health issues amongst autistic individuals.

A quick note on language. When I’m talking about women I mean all people who identify as women, including our trans sisters. International Women’s Day may not resonate with many non-binary folks.

Due to the topic, somethings language around ‘women’ and ‘girls’ in this article may not feel as inclusive as I’d normally like – and my language does slip into the binary on occasion in this blog. But neurodivergent gender minority folks, and there are a lot of you, I see you – you are valid and important.

The conversation around neurodiversity, queerness and gender expression is a fascinating one – and warrants its own blog.

There’s more of us than we thought

In the last few years, it feels like there has been a tidal wave of new people receiving a diagnosis that welcomes them into the extended neurodivergent family.

One study found an 787% increase in autism diagnoses between 1998 and 2018. Many more people these days are realising they are neurodivergent. Especially women and girls. I notice this in my own friendship groups, online, and even overhearing snippets of conversations walking down the street.

The term ‘neurodivergent’ was something I’d never heard of until a few years ago, and now it’s a common conversation topic.

For both ADHD and autism diagnosis, the official numbers still suggest higher prevalence in males. However, there is increasing understanding that this is partially due to biases in referrals rather than there being higher rates of autism or ADHD (or both) in males.

Referral bias also leads to fewer people of colour getting an autism or adhd diagnosis. Living in the world as a neurodivergent woman is challenging enough, adding experiencing racism to the equation is a whole different ball game.

Aside from referral biases, why is it that so many women and girls don’t find out they are neurodivergent until adulthood?

Improved understanding

Recently there has been greater public awareness and understanding of neurodiversity. From the eerily accurate TikTok algorithm ‘diagnosing’ people, to the pandemic forcing millions of people to work from home – with the lack of office structure amplifying their ADHD symptoms, our modern lives has shone a light on neurodiversity and numerous other ways that our brains can be wired differently.

Some people undermine the journey of self discovery that I and thousands of others have been through recently. Naysayers may say things like ‘Everyone forgets things from time to time’, or ‘we’re all a little bit autistic/OCD’ etc.  I strongly believe having a framework and a language to describe your experience, even if you don’t want to ‘label’ yourself, can be a helpful tool.

By improving our awareness and understanding of neurodiversity, we’re helping reduce stigma, better understand ourselves, our loved ones and people in wider society. Surely that’s an amazing thing?

Why this gets missed in schools

One reason why parents and teachers don’t notice an ADHD girl’s neurodivergent traits is that our behaviour is often less disruptive compared to boys. The tired ADHD stereotype is of a hyperactive (white) school boy getting into trouble at school.

Often, females are more likely to have an inattentive type of ADHD, or their hyperactivity may manifest as something subtle like foot wiggling rather than ‘disruptive’ behaviour.

I’d also add to this the idea the patriarchy drills into us that girls need to be agreeable and non-disruptive – so we often quash any impulse to do otherwise.

Growing up, I was always told, in a stern manner, that it was of utmost importance that I was ‘lady-like,’ a term which is shorthand for unobtrusive and agreeable.

This was drummed into me from such a young age that it became a smokescreen that hid my executive dysfunction and other ADHD symptoms. And only with increased self-awareness caused by the pandemic and getting older was I able to finally become aware of my ADHD and seek a diagnosis.” 

McPin team member

With autistic females, the presentation can be different to autistic males. With teachers and parents looking out for more stereotypically male manifestations of autism, many adults don’t notice low-support needs female autists when they are young.

Young girls can internalise their symptoms as personal failings when neurodevelopmental differences are missed in school. For the undiagnosed ADHD female, she may consider herself disorganised, or lazy. An undiagnosed autistic girl may feel it is their own personal failing that they find ‘fitting in’ so exhausting.

Masking or camouflaging

Researchers cite more frequent and effecting masking as a reason why women have lower rates of autism diagnoses. Masking refers to a neurodivergent individual playing the part of a neurotypical to fit in. For example, an autistic person suppressing their stimming, forcing eye contact or mimicking social behaviours.

Or an ADHD person developing perfectionistic tendencies to hide their disorganisation, or religiously checking that they haven’t lost their phone, wallet or keys. I’m extra cautious around checking where my belongings are at any given moment, given my disasterous track record. I regularly pat myself down in a panic, thinking I’ve misplaced something.

Masking is our self-preservation technique we adopt to avoid other people shunning us. It is exhausting!

To me, I feel like this goes a long way in explaining higher rates of mental health issues amongst neurodivergent folks. We are exhausting ourselves trying to fit into neurotypical standards.

By masking, both autistic and ADHD women’s symptoms can become less pronounced, meaning they are less likely to receive their diagnosis. I’ve heard multiple anecdotes of autistic women seeking a diagnosis, but their doctors telling them they can’t possibly have it as they are ‘too good at eye contact’.

I have autism and was diagnosed in my late 30’s. I am significantly affected by social and sensory environments finding many public spaces overstimulating and confusing.

I lived up to the gender and cultural stereotype of submissive, compliant good little Indian girl. However, this  resulted in astronomical meltdowns at home. At school a meek mouse, at home, a roaring lion. This was really confusing for myself and everyone else around me. 

Through a lot of self work, I have made peace with my anger. I appreciate its presence in my life as a teacher and not a foe. This peace also allows me to channel my excess ‘melt down’ energy into passionate pursuits, including working at McPin!”

– McPin team member

Misdiagnosis

Another huge challenge is that autistic women and non-binary people are often misdiagnosed. A typical misdiagnosis for autism is Borderline Personality Disorder (BPD) – something explored through Words That Carry On, a project that runs with the support of McPin. 

Although there are some overlapping traits for autism BPD, they are distinct and similar behaviours may come from very different motivations.

In contrast to the over-representation of males with diagnoses of ADHD and/or autism, 75% of people given a BPD diagnosis are female – with newer research suggesting that there is a bias to overdiagnose BPD in women. I’ll let that one sit with you to see how you feel about it.

For women with ADHD, misdiagnoses include anxiety disorders, bipolar disorder, as well as – you guessed it – BPD.

Misdiagnosis can feel invalidating and be a hugely frustrating experience, but it is still common. But through research – and clinicians staying up-to-date with research –  we can improve our understanding of these conditions, and help more people affected by them.

Final thoughts

Ultimately, we need more and better research for improved mental health outcomes for neurodivergent folk – especially women, trans people and people of colour.

Better awareness is a good starting point, but we have a long way to go before we properly understand neurodiversity in women, and neurodivergent women, and especially neurodivergent women of colour get the support that they deserve.

An essential component of better research for neurodiversity in women will be research that listens to and centres the experience of neurodivergent women.

This kind of research draws upon our expertise by lived experience – keeping research relevant and impactful.

If you’re part of the extended neurodivergent family, the things that make you ‘wired different’ include both blessings and curses.

It can be easy to focus on the things that make life challenging, but it’s important to step back and appreciate the positives too, as they are in abundance. Stay weird – it suits you!

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