Ask anyone about autism and they’ll probably describe the stereotype: difficulty socializing, lacking empathy, focused interests. But as with everything, it’s more complex, especially for girls and women with autism. While there are various statistics on the ratio of boys to girls, it’s clear that there are many more girls with autism than originally thought. And because the diagnosis of autism has been based on the male presentation, it can be really difficult for girls to get diagnoses and support. This is my experience.
I was a really shy kid. I was “too sensitive”, took things “too personally”, needed to “grow a thicker skin”. This continued into my teenage years. I was always anxious, striving for perfection in everything. I was terrified of doing something wrong, of getting into trouble. I had some wonderful friends but I never felt I fitted in, like I was stuck behind glass. Everything seemed so much easier for everyone else; what was effortless for them exhausted me. I felt like I couldn’t function as well as everyone else and that made me feel broken.
A lot went into getting the diagnosis: multiple doctors, books, medications, therapies, further mental health problems. But due to my mum’s never-ending commitment, I was eventually assessed for Autism Spectrum Disorder. That was gruelling but slowly, everything started to make sense:
- I’ve always felt emotions strongly. If something goes well, I’m bulletproof. If something goes badly, I go into meltdown. Or I go into shutdown and retreat to my darkened room, unable to think or talk properly. Sometimes a meltdown leads to a shutdown and it can last for days or even weeks.
- I’ve never had trouble empathising. In fact, I’ve been called too empathetic. I frequently experience other people’s emotions as if they’re mine and it’s strange and upsetting. It can feel like I’m intruding when all I ever want to do is help; it’s really difficult for me to see someone upset and not be able to do anything. It can also be very difficult to do something like walk down the street. I get overwhelmed by how much makes up a person: memories, favourite colours, foods they hate, songs stuck in their heads, etc.
- I’m extremely sensitive. Changing plans, loud noises, bright lights, unfamiliarity: all those things increase my anxiety, making it difficult for me to function, make decisions, interact with everything around me. Processing that information takes a lot of energy and I’m easily exhausted and overloaded which can lead to a meltdown. It’s a fragile existence.
- Socialising is difficult and tiring. Again, processing everything takes so much energy: a person’s words, body language, tone, reactions, everything going on in the background. It’s hard work. It feels like I’ve had to learn how to be social when everyone else had it hardwired, processing all this information automatically while I have to actively process it. Many people don’t realise I’m autistic and even visible signs go unnoticed, like my difficulty with eye contact. Besides the fact that I have no idea how long you’re supposed to hold eye contact for, I feel very vulnerable when someone looks into my eyes, like they can tell what I’m thinking.
- I do have a specific interest: writing, my favourite being songwriting. Apparently, interests in the female presentation of autism often go unnoticed because they can be similar to a neurotypical girl’s interests. It’s the intensity that’s different. Once I’m interested in something, nothing else matters. Writing songs is everything to me. It’s the only thing I want to do, the only thing I want to do for the rest of my life. A big part of me feels like my life isn’t worth living if I’m not a songwriter and that’s terrifying to think about because the music industry is incredibly tough.
Of course there are other symptoms and this is just one presentation of autism. As someone once said to me, we are the experts of our own autism. Life post-diagnosis is difficult but at least I know what I’m struggling with. Not knowing was awful, like I was drowning and unable to find the surface. The lack of understanding has real consequences and the time it takes to get a diagnosis plus the repeated invalidation causes problems of their own.
I’m so lucky to have the support I do but there are so many people without that. There needs to be more information, more awareness, more understanding of autism in women. Too often it goes unidentified and the effects of that can be worse than the struggles caused by the autism itself.
Art by Jess Brown