Autism in women - why it's different and what we can do about it

The title of this article seems very simple at first, doesn't it? But wrapped up in short words like "autism" and "women" are a whole host of characteristics, expectations, experiences, challenges and opportunities. Not just as a group, but also as individuals within that group.

"I don’t think there’s an inherent difference between autistic men and women. What there is a difference in, is how society treats and socialises males and females."

Dr Kate Fox, author, poet and comedian

When looking at autism in women, like everyone, I look through a particular lens. My favourite is the social and cultural one - looking at how autistic women are viewed and treated by others. I like this perspective because it encapsulates so many of our experiences and challenges - and it includes a wider range of people (such as trans women and those assigned female at birth). It sidesteps the need for us to try to identify or label ourselves, and enables us to look at how our experience is shaped by the world in which we live.

Why it's different

There are many reasons why autism in women is different. Here are 3.

Underdiagnosis

One of the main reasons autism is experienced differently by women is that many more of us are undiagnosed than our male counterparts. 1.8% of men are diagnosed autistic, compared to 0.2% of women (stats from the National Autistic Society).

The diagnostic criteria are based on a male presentation of autism, and stereotypically male interests and male behaviour. For example, they often talk about "rude" behaviour which is something that men tend to get away with, while women are socialised out of it. We're taught to put others' needs and feelings before our own.

Unrecognised traits

Women fly under the radar when it comes to our autistic traits being recognised. We tend to be better at social interaction, which is one of the key areas of difficulty for autistic people. A number of studies support this assertion, including one that suggests women find social interaction more rewarding.

My own theory about why women are not recognised as autistic is partly because our special interests are more productive. They're not problematic for other people - in fact, they benefit other people, so no-one complains about them. Male autistic special interests tend to be focused on learning information about a particular topic, or collecting, or filing, or gaming. Women are more likely to be making things, or producing something, or researching topics of value to a wide range of people.

Other autism professionals have also pointed out that autistic women and girls tend to have more mainstream interests as well as more productive ones. Imagine an autistic girl who's hugely into horses or K-pop - she doesn't really stand out. But an autistic boy might because he's collected information on every roundabout between your house and Grandma's. The signs for an autistic boy are bigger and louder than those for an autistic girl.

This is of course a huge generalisation - plenty of autistic men cook, for example, and plenty of autistic women game. Looking through the cultural and social lens I mentioned earlier: I'm talking not just about the things we naturally gravitate to, but also the things we're pulled towards and pushed away from, as part of our position in our society and culture. An autistic woman who wants to be an engineer is going to have a harder time getting there than an autistic man with the same skill set.

Lack of role models

Temple Grandin was the first autistic woman I saw in the public eye, and the first person who gave me an indication that I could be autistic. I didn't relate to Rain Man or any other autistic person I saw on TV - they were all men and they were all very different from me. Autistic women don't see other autistic women in mainstream media so they don't have people to relate to. No-one who shares similar traits and struggles. No-one to look at and say "hey, I'm like that too!".

This is starting to change, slowly, but you still see lists of famous autistics that don't include any women. And the issue is compounded for black and Asian women. When I compiled my list of famous autistic women , it was hard to find women who aren't white. Partly because diagnostic rates are even lower for black and Asian women, but also because "white" is the default setting when you're looking for any representation.

This issue is compounded by what happens when we speak up. When we've said "why aren't there any women?" or "why are they all white?" our concerns are dismissed and invalidated. We've all experienced the eye-roll from people who think we're banging the feminism drum a little too vigorously, or who think we're "making everything about race". But we're not. It's not much to ask to include people who look like us, or think like us, or have similar experiences to us. And the impact of positive role models can be wide and far-reaching. It can lead people to a life-changing diagnosis, to getting the help they deserve, and to a deeper understanding of themselves.

What can we do about it?

The answer to this question depends on who you are.

Medical and autism professionals

We are fortunate that we have many amazing professionals working in autism research and diagnosis who understand the issues I've raised - plus many more besides. But there aren't enough of them! More training and more research on autism in women is required, as well as re-evaluating the diagnostic criteria to make it more inclusive. We need clinicians (front-line medical staff) who are primed to spot autism in women when they present with something else, so they don't just write them off with a mental health issue and send them home with a prescription for anti-depressants.

The gold standard of course would be automatic screening for neurodiverse conditions - both in primary schools and in any mental health assessment. We're a long way off that, but it's still something we should work towards. The benefits - to individuals, the NHS and society as a whole - would be enormous.

Allies

We're relying on you. Whether you're autistic or not, and regardless of gender, we need you fighting our corner.

We need you to understand and support us. We need you to advocate for us - putting us front and centre of the autism conversation. Remembering we exist when you're talking about autistic people isn't enough - we need you to be talking about our specific needs, experiences, and of course strengths.

What can you do, specifically? Well, that depends where you are. At work, make sure your autistic colleague knows what she's entitled to (protection under the Equality Act). Give her space to speak and have her voice heard. Ask her what she needs and how to help her work to her strengths.

Outside work, if you're the friend, partner or relative of an autistic person, some basic support is easy to give and you'll reap the benefits of having a warm, empathetic, loyal autistic woman in your life. Give her space to indulge her special interests. Encourage her to expand her comfort zone when you know she can do things. Make her feel safe to ask for what she needs. Allow her to feel comfortable being her authentic self with you.

Autistic women

The most important element.

First of all, a lot of autistic women have told me how much it helps to see and hear people like them. Connecting and communicating with other autistic women, in places without shame or judgement, can help us get to know ourselves. Autistic female communities are also places where it's safe to talk a lot about the things that are important to you - spaces where no-one will tell you to "stop going on about it" but instead will listen. Autistic people tend to have a good rapport with each other and of course, will understand each other's needs, even when they differ from their own.

If we can, we need to speak up for each other. To share our experiences. We can do that in the way that suits us best, whether that's writing, or in visual art, or speaking. It might be in an informal conversation, or it might be publishing a blog post. Whatever way works for you.

Even if you think you aren't doing much, you're a vital part of expanding the conversation around autism to include every autistic person.

Finally, a message to autistic women

"Comparison is the thief of joy," said Theodore Roosevelt. As women, and as autistics, we tend to compare ourselves to others a lot - and find ourselves lacking. We criticise ourselves for our perceived shortcomings, because no-one has ever encouraged us to value ourselves, especially if we're not the neurotypical, white, male default.

But autistic women have a tremendous amount to offer. We are helpful, interesting, funny, logical, knowledgeable, skilled, talented, and so many more things. Yet we still find it hard to recognise and embrace our true selves. To understand that we really are wonderful people.

Just the way we are.

Watch my video about autism in women here .