By K. Vis.
It’s April. It’s Autism Awareness Month. While a lot of people rightfully focus on how we’d like a better symbol than a puzzle piece or how Autism Speaks doesn’t speak for us, perhaps it’s time to focus on what life is like—both before and after a diagnosis. From the horse’s mouth itself, a personal account.
I feel like I don’t fit in, I told the psychiatric nurse. I don’t get why other people can do things with ease that seems impossible to me. What am I doing wrong? It’s like I’m missing something.
Have you looked, she said, into Asperger’s?
Five little words changed my life forever. I left the appointment baffled and confused. I’d never recognized myself in the stereotypes. Yet I would be diagnosed three (long!) years later, shortly before my twenty first birthday. And for all my initial confusion, that psychiatric nurse whom I met only twice, helped me more than she’ll probably ever know. Now it’s April. It’s Autism Awareness Month. It seems kind of beautifully ironic that this is the month I was born in. Here are some other important A words: alienation, age, acceptance. Autistic kids often feel alienated. Autistic girls and nonbinary people often get diagnosed later. And acceptance can be both easier and more difficult than you might expect.
You see, growing up, I was the ‘weird kid’—always slightly off, always a little too enthusiastic, a little too sad, a little too angry, a little too much. I had sudden meltdowns that felt impossible to track. Something that was fine the day before, could set me off the next. This would continue into my teenage years, and like many undiagnosed autistic people my life became clouded by heavy bouts of depression and anxiety. It was only after my first year of university I dared to voice some of my most desperate thoughts: something was wrong with me, and I just couldn’t figure out what. Things that seemed so easy for my peers were like climbing a mountain to me, and then some. It felt like I was always communicating through water. The psychiatric nurse suggested that I looked into Asperger’s, now commonly called Autism Spectrum Disorder or ASD. Like many others, I’d been subjected to the stereotypes of autistic people as cold, strange or weird. That idea of ‘having autism’ felt incongruent with who I was. Some of the most ‘stereotypical’ traits didn’t seem to apply to me.
Until I chanced upon a site with some information about women with autism.
I’m not a woman, but I was raised as a girl. Looking at that list of symptoms felt like looking into a mirror: the masking, preparing jokes ahead of time, forcing that eye contact, the tics and stimming. And I was not alone in this feeling all of a sudden. Many autistic trans and nonbinary people and women experience similar feelings of recognition (Piper). Autism is still largely seen as a boys’ thing. For a long time, little girls and women were on the margins thanks to medical misogyny. Boys are still three to four times more likely to get diagnosed than girls, as doctors aren’t taught how to recognize their symptoms. This is because social rejection and alienation teach young girls to mask or camouflage their symptoms. This helps them fit in and navigate reality better but takes huge effort to maintain, and thus leads to physical exhaustion and huge anxiety (Russo). The difference is so stark that there’s an Autistic Women & Nonbinary Network, devoted solely to those previously forgotten. And while I’m thankful for that growing awareness, it won’t take away the fact that so many of my teenage years feel wasted because nobody knew how to recognize the signs. It won’t quell that smouldering ember of rage of sitting in a group therapy, where the boys knew from toddlerhood and the rest of us only found out in their early twenties, when our lives had already taken a left turn into depression and chaos.
And it’s far from easy to get diagnosed as an adolescent. When I first tried to get help I was told that there was no place nearby that tested for adult autism. And while all my doctors agreed that I most likely had autism, it took three years before I got an official diagnosis. I was twenty one, clawing my way out of the deepest pit of my life. While I owe recovery to several people, I owe it mostly to the fact that getting that label, however unofficial, allowed me to find ways to cope. Suddenly those unexpected meltdowns started making sense. I could figure out what stimuli I needed to avoid. I learned that I needed to ration my energy and that I needed structure and organization. After twenty years, I finally understood myself.
There are plenty of reasons not to want to get diagnosed too. I’m not allowed to just go and get driving lessons: the government forces me to jump through denigrating extra hoops to prove I can drive. It involves going through another psychiatrist to judge me by fifteen minutes of conversation, having to shell out another extra 200-300 euros on top of the already extraorbitant prices of learning to pilot a car and hoping I don’t get defrauded. It means that sometimes professionals will take me less seriously. Then there are stigmas, the lack of representation. There’s living with the fact that people would much rather have their unvaccinated kids die than ‘become autistic’. It also means dealing with the kernel of knowledge that autistic folks are twice as likely to die early (Griswold). It’s knowing that some people, including the most prevalent group Autism Speaks, think you’re in need of a cure for an integral part of you (Luterman); that Sia thinks we’re fun and quirky for her grossly offensive movie project. That the world thinks you need an awareness instead of acceptance month. Learning about myself didn’t change all these despicable things out there in the world.
But here’s the thing: getting that label saved me. It allowed me to start learning how to cope. And not just cope. Sure, left and right befuddles me, math is my arch enemy and whoever brings celery near me will get a swift request to take that away ASAP or else we’re going to have a problem. But in spite of that I’m doing better than I ever have. Most days, I thrive. I’ve learned how to organize my day according to my needs and obligations. I can focus for hours and get something written in two or three hours tops (the first draft of this article was written in an hour and a half). I know how to set boundaries, I’ve learned how to communicate, I’m determined to see things through, I’m passionate as all hell about the things I care about. I’m even finishing up my second go at university with great success so far!
So here’s my message to whoever might read this: it’s okay if you’re autistic. It’s not the end of the world. It’s not changing anything about you. Maybe you’re not comfortable with it; maybe you don’t want to get diagnosed because of all the reasons I mentioned. Maybe you’ll grow comfortable with it, or maybe you won’t. But please don’t forget about all your good traits. Your passion, your creativity, your skills, your focus. There’s a happy ending for you too. As for me…
It’s April. It’s Autism Awareness Month. It was my birthday. And this year, I’m thriving as the passionate, autistic person I was always meant to be.
Cover image by Bich Tran from Pexels
Griswold, A. “Large Swedish study ties autism to early death.” Spectrum News, 11 December 2015. https://www.spectrumnews.org/news/large-swedish-study-ties-autism-to-early-death/ Accessed 14 April 2021.
Luterman, S . “The biggest autism advocacy group is still failing too many autistic people.” The Washington Post, 14 February 2020. https://www.washingtonpost.com/outlook/2020/02/14/biggest-autism-advocacy-group-is-still-failing-too-many-autistic-people/. Accessed 14 April 2021.
Piper, R. “12 People On What It Felt Like To Discovery Autism.” Autistic Women & Nonbinary Network, 19 May 2018. https://awnnetwork.org/12-people-on-what-it-felt-like-to-discover-autism/. Accessed 14 April 2021.
Russo, F. “The costs of camouflaging autism.” Spectrum News, 21 February 2018. https://www.spectrumnews.org/features/deep-dive/costs-camouflaging-autism/. Accessed 14 April 2021.
Great piece, K.! Looking forward to reading more.
– Anna Geurts