I am autistic

Today is International Women’s Day, and this year’s theme is #InspireInclusion! So, I thought I would write about autism in women and girls, and why it is important people are aware of the differences between autism in males and females.

In the past, many people believed that autism was a male disorder. There was even a theory that autism was an extreme version of the male brain (how daft does that sound!). A study in 1981, found that there were 15 times as many boys with autism than girls. Nowadays, it is common knowledge that the ration is 4:1; however, some studies have also found it to be 3:1. Given this change, and what I know about autism, I see no reason why there would be any difference between men and women’s likeliness of being autistic. I believe that the disparity in diagnosis is not due to a lower prevalence of autism in girls, but rather more of us going undiagnosed (or even misdiagnosed) due to a lack research and knowledge around autism in girls. 

When I look back at my childhood, I can see with hindsight many autistic traits that were commonplace in my daily life – but it took until I was 16 to get diagnosed with ASD. Instead, I was talked about as shy and worried; a perfectionist that’s too hard on herself; and an introverted kid. So why is it so hard to get diagnosed with autism as a girl?

The main reason it that autistic women are more likely to mask. Masking is a coping mechanism – used consciously or unconsciously – to appear non-autistic, or “normal.” Masking could look like practicing conversations in your head (known as scripting) or repeating facial expressions in front of a mirror until you get them right. When you mask you copy the mannerisms and even personalities of those around you, sometimes even to the detriment of your true self. 

It is believed that young autistic girls have higher social motivation and desire to fit in. They will mask and learn to mimic social skills that come intuitively to non-autistic kids. Whereas autistic boys may be more likely to play on their own and to make friends when it is comfortable for them; autistic girls are more likely to hide their autistic traits to fit in and be part of a friendship group. I think this is perhaps due to the social pressures of young girls’ friendships. This social motivation and high level of masking results in fewer obvious social difficulties, and, in turn, autistic traits not being picked up on by parents, doctors, or teachers. 

An example of how I masked was by learning phrases and idioms. Even though I quite often didn’t understand them, I was always fascinated by them. I would go to my teacher’s office and ask, “what does this mean?” I would then bank it away in my brain and keep it in mind for future use. Albeit I still sometimes get my phrases mixed up or use them in completely the wrong situation, this a technique I have developed to make socialising easier for me. 

Masking also impacts how people stim. In women and girls, stimming may look more like twirling your hair or picking your nails. This can be less noticeable compared to other stims such as rocking back-and-forth or flapping your hands. 

When I was first diagnosed with autism and I was learnt about stimming, I thought “I don’t do that.” However, over time, I have noticed myself beginning to stim more. I used to describe feelings shivers of excitement – but I know now, in reality, these shivers were just me suppressing my stims. These days, I am better at unmasking and stimming freely – and I love it!

One of my key memories from my time in high school, when I was first beginning to struggle with my mental health, was talking to the educational psychologist. I was referred to her for a preliminary assessment for autism, and so she was asking me all these questions about how I found school. I remember her asking me what my favourite subject is, and I said maths and music. She asked if I did my homework, and I said yes, that I loved my maths homework. She then proceeded to tell me to my face that I seemed fine, and she wasn’t going to progress things any further. After that short conversation, she had somehow deciphered that I was coping okay (despite all the signs suggesting otherwise) and that because I liked learning, I didn’t merit any further assessment. 

Being highly academically achieving is another example of masking. In my case, I really did love learning, but I did not like school and everything that surrounded it (the environment, the socialising, the unpredictability). The educational psychologist I talked to didn’t have an understanding of how autism portrays in girls or the fact I could have a conversation because I’d learned how to by observing social situations. If she has asked other questions instead of focusing on my grades – such as “how do you feel before school each morning?” or “do you get upset and distressed often?” – it would’ve been obvious I dreaded school each day and was struggling to cope.

In my autism assessment, I did a questionnaire called CAT-Q which is the Camouflaging Autistic Traits Questionnaire. This was specifically designed to identify people who might be autistic but do not meet the diagnostic criteria due to their ability to mask. In my case, the was used along with the typical autism assessment process to gain a further understanding of how autism affects me. The CAT-Q tool looks at masking, compensation (using techniques to cover up difficulties socialising), and assimilation (using strategies to fit in with others). Examples of the statements included in the CAT-Q are: ‘I have to force myself to interest with people when I am in social situations’ and ‘In social situations, I feel like I am pretending to be ‘normal’.’ By asking questions like this, the autism assessor can understand how much an individual masks their autistic traits, and what is going on inside their brain that others cannot see. This is helpful for many autistic women because there is a high level of masking (as mentioned above).

Furthermore, a lot of the special interests associated with autism – trains, collecting, or roleplay – do not appear in autistic girls. We tend to have more “socially acceptable” (and so less noticeable) interests, such as books, animals, or celebrities. As a kid, I loved reading. I devoured the whole Harry Potter series in 2 weeks. Because this is a common interest, it went unnoticed quite how much I was obsessed with it. I would memorise facts from the books and lecture at my parents about the plots. I would also pretend to be my favourite characters. On the surface, this looked like me being a typical kid and engaging in imaginative play, however – in reality – I admired these characters’ ability to make friends and go to school and go on these awesome adventures, so I would commit to copying their personality, routines and what they wear. This is an early example of masking. I believed that if I only did what those characters did, despite their fictionality, I would find everything as easy as them.

Hyper-empathy is also more common in women and girls. This was one of the first reasons a teacher suggested I might be autistic. It is an outdated myth that autistic people don’t feel empathy, we just show it differently. For me, I took every emotion around me in like a sponge and I was often left overwhelmed and upset. I struggle to separate other people’s emotions from my own, and so simply hearing a story on the news or a friend confiding in me can tip me over the edge. 

A strong sense of justice is also a common autistic trait that a lot of people don’t know about. As a child, I found it really hard when people didn’t follow the rules. My parents tell stories of me as a young girl obsessing about instances I deemed unfair, or refusing to play games with other kids who didn’t play like I did.  Even to this day, it upsets me if people do something wrong. Even if it’s a small thing, like looking at your phone in the cinema, or having your feet on the seat on the bus – this can make me very upset and angry. It is common for this trait to be seen in young autistic girls as us being bossy or needy, when – in fact – this stems from big emotions, such anxiety and frustration, that autistic people can find hard to deal with. 

So, these are a handful of the traits seen frequently amongst women and girls. Because these traits are not what many people associate with autism, a lot of us will go undiagnosed in childhood and beyond. 

But why is an early diagnosis so important?

I’ve heard people compare being undiagnosed to a swan: though we may appear to be swimming along gracefully, under the water we are thrashing about, trying to stay afloat. This metaphor sums up life for me before my diagnosis: just trying to stay afloat. I was surviving, not thriving. 

A diagnosis changed that for me. It gave me a more positive viewpoint of myself. I no longer thought that I just wasn’t trying hard enough, or that there was something inherently wrong with me. I knew I was autistic, and it made the world of difference. My mindset changed from “I cannot cope’ to actually “I’ve been coping really well.” Along with the many “oh, that’s why I do that” moments, I have developed an understanding of myself that allowed me to make decisions – equipped with the knowledge I was autistic – to make my life much easier.

There have also been a lot of times that I look back on my childhood and think about that little autistic girl that was so overwhelmed on a daily basis. My autism seems so obvious to me now; how did people not figure this out sooner? I often wonder what would’ve happened if I had gotten the validation and understanding of myself that came with my diagnosis earlier than I did. Would I have gone through those years of struggle? Would I have still developed mental health issues? Would I be without the trauma that being undiagnosed in school gave me?

So, this International Women’s Day, try to be aware of how autism portrays in women and girls and how this can impact our ability to get a diagnosis and the challenges we face. And always remember to #InspireInclusion!