In the UK, there are reportedly 700,000 people living with some form of autism. The current ratio of men to women living with autism is thought to be 10:1, however recent studies have suggested that the estimate is closer to 3:1 which means that up to 200,000 women and girls are being omitted 1 from these national surveys. The growing recognition of this issue has led to more referrals and studies into autism, and the ways it affects each gender differently.
However, the system isn’t perfect yet, and many young girls and adult women fall through the cracks. Statistically, young girls with mild symptoms are likely to be diagnosed two years later than 2 boys, however, many women are not diagnosed until adulthood. This is because autism in girls is represented differently than boys, but we still use boys behaviour as the criteria for people with autism.
The reason I write this is because I feel I am one of the women that were left behind, to be a little dramatic. I am lucky to say that what I experience would not be considered severe, and I have had the fortune of having understanding friends that have humoured and helped me as I've grown into myself. It could be a lot worse. Nevertheless, the way medical professionals and society as a whole views autism have undoubtedly shaped my experiences and the person I am today.
Flash-back to six years ago, when my fourteen-year-old self was sitting in a therapist's office. I was there for issues relating to depression and anxiety, so you can imagine my surprise when I was handed a print out of the NHS website, with the word Autism written in bold at the top. The therapist explained to both me and my parents that I may be autistic, as I displayed many of the typical traits, and I should try and get tested.
At first, I was just confused; autistic was an insult, something you got called if you said the wrong thing or liked the wrong TV show, it wasn't something I wanted to be. I sat in my garden and read through the printout, and immediately I started to cry.
As cliché as it sounds, everything suddenly fell into place. The immense need to be alone after socialising, the uncomfortable feeling that always came when I had to make direct eye contact with someone, the feeling that I was just not quite like my friends. It was like a weight was lifted off my chest, and for once I felt like I understood myself better.
Unfortunately, the feelings of relief were short-lived. I was lucky to be able to do the autism test quickly, only waiting around four months instead of the usual three and a half years wait many 3 young people are subjected to. Many of the questions were standard, asking what age I learnt to walk and talk and if I had adverse reactions to certain textures or noises. But some of the questions seemed odd, and at the time I remember feeling like I wasn’t answering like they wanted me to.
“Do you collect things, like trains? Do you enjoy tinkering with electronics? When you’re upset, do you lash out or start making too much noise?”
I never did any of those things. However, I did watch the same episodes of a show I liked continually for weeks. I also did everything in my power to maintain a routine, even if it’s pointed out to me that I don’t need to. One example of this would be me taking my swimming costume to school every Wednesday for a year, despite the fact I was never allowed to swim due to issues with my inner ear.
I was not shocked when the news came back that I wasn't autistic, as I knew they never asked me any of the things I knew I struggled with, instead they asked me how the typical autistic boy deals with their problems. I felt discouraged and like I was stuck in limbo; I didn't feel like I resonated with the few autistic boys I knew or the 'normal' girls I knew at school.
It’s at this stage where I should outline a few issues that doctors encounter when they are trying to diagnose girls. For most girls that have autism, they will not present it in the same way boys do, both in their adolescence and as adults. Women may present as shy, whilst boys may present as anti-social and even develop behavioural problems to deal with the way they feel. Women may still also develop deep interests, they just might be more socially acceptable and ‘normal’. Girls are more likely to fixate over a band or an actor, something that happens to most teenagers and so is easier to not recognise as a symptom. Women are also apparently just better at hiding their autism; masking their symptoms and copying their friends to better fit in, without really understanding the meaning behind their actions.
During high school, I would routinely copy my friends, from their body language to the different inflexions they would use during a sentence. Usually while walking home from school, I would recite the conversations I had throughout the day, running back what people said to me to try and determine if what I said fitted in with how everyone else was acting. I never realised that I was essentially imitating my friends and peers, I assumed that everyone was as unsure and uncomfortable as I was in social interactions.
As a message to my younger self and any young girls who feel this way, it’s important to recognise you’re not alone, and the way you feel is nothing to be ashamed or embarrassed about. It is not easy living with autism, it’s always going to be slightly difficult navigating the social aspects of life and learning how to step out of your comfort zone, but it doesn't make you a bad person and it doesn't make you bad at being a girl. The stereotype of autism being a male condition affects how people perceive women with autism, as it's assumed that girls just don't have these issues.
If you're a girl and you don't care much about the social hierarchy at school, or you aren't eager to start dating other people, or you don't want to go to all the parties at the weekend, that's okay. Femininity comes in all forms, and for some women, that's the right to be a little blunter and set more rigid boundaries because that's how you feel most comfortable, and that's completely okay.
Now, as a twenty-year-old who attends university in a new city, I have been lucky enough to learn to develop and manage myself better. I still struggle with the fact that I am medically not autistic, and hope that I can be retested and judged at a level I feel is better suited to my gender and my needs. I still struggle with certain aspects of socialising, and occasionally I have had to explain to my peers that I’m not trying to be dismissive or rude, I am just functioning in the way that comes most naturally to me. This comes in many forms, like my resistance to eye contact, the fact I get uncomfortable when people touch me without my permission, or the way I handle many emotionally charged topics. To any girls who feel like they’re being ‘rude’ because they act this way, you’re not. You just process thoughts and emotions differently to other people, and sometimes people just need to be reminded of that, especially if you don’t ‘seem’ autistic to outsiders.
I would also encourage all girls to get a second opinion if they feel like their issues were ignored, the more girls that come forward to show the different ways they experience autism will mean medical professionals will be forced to listen. Progress can be made, and I'm hopeful that in the future there will be better methods for testing for autism across the sexes and genders that don't focus on a gendered bias.