1 in every 151 girls are diagnosed with autism in the United States and I am one of them.
This is a shock to literally everyone in my life, but me. I am 18 and was diagnosed this year. I’ve thought that I had it for a long time now, but because we live in a society that has stereotyped and stigmatized autism, I did not get tested. Instead, I gaslit myself into thinking there was something wrong with me and finding out that there is not has been a huge relief.
I was quiet as a little kid. I have a learning disability (math is hard, guys.) I would have panic attacks over nothing and exhaust myself spending time with people I know and love simply because of my immense sensory overload issues. Crowded places are not my bestie. I started college at 14 and have maintained a 4.0 GPA since. I have always needed a super structured routine and sense of control or else I have a meltdown. I’m really awesome and have a problem understanding self-consciousness.
I can think of times when I masked, something autistic girls are trained to do, because I desperately wanted to be normal. I don’t want to be society’s double agent for ableism- trying to be “normal” while everyone, including myself, is kept from being free. That’s no fun.
I would like to take this time to break down some of the messages that we are taught about autism and answer some questions you might have.
“Are you high-functioning or low-functioning?”
Fun fact! These labels are actually harmful to everyone on the spectrum. I do not function better or worse than anyone else with autism. The fact that I have minimal support needs does not mean I am any less autistic. Also, saying that someone is “low-functioning” when in reality they just function differently is wild and historically awful.
“Are you sure? You don’t look or act autistic.”
Autism is a neurological developmental disorder. It is a disability that you can’t inherently see therefor nobody “looks” autistic. Also, you do not live in my mind and probably aren’t familiar with the specific traits of girls with autism so it would not always be clear to you if I was displaying signs of it. Also, it is not a personality trait.
“Why did you get diagnosed so late?”
All of the first research and testing data was done based on boys’ experiences with autism and because of that our healthcare system fails girls with autism to the point where 18 is actually a pretty early diagnosis age. We are often misdiagnosed with many many many other things first because the amount of research actually done on girls with autism is limited. Thanks sexism in healthcare!
“How do you know you’re autistic?”
I read everything associated with it and went “oh shit! That’s me.” All of the work that I have done to make the world a better place, my grades, my hair-twirling, the confusion I have with empathy, my monthly obsessions, how exhausted I am after social interactions, my literal incomprehension of social codes, my sensitivity, the fact that all of my friends are adults, my fierce silly-putty/fidget toy collection, my facial expressions, how I close my ears whenever things are too much, my writing, and everything else good and bad, is caused by my autism. It is the essence of who I am.
To clear up a few more misconceptions: First, autism is not a mental illness. Second, vaccines cannot give you autism although I can promise there are much worse things you can have and please miss me with any assumption that autism makes you sick or diseased. Third, contrary to what I have seen in most TV/films, all autistic people are not quirky outcast boys who exist solely to spout off random facts about science. Believe me, you would not want me as your nerdy brainiac sidekick.
The unemployment rate for autistic people is 85%. 70% of autistic adults say they are not getting the proper resources to help them. 1% of the world’s population is autistic yet autistic people make up 12.3% of the world’s homelessness population. Girls with autism are 3 times more likely to experience sexual violence.
Until we abolish the stigma around autism, people who are autistic will continue to live with the effects of those statistics above. This is a disability, civil, and human rights issue. I do not want to be a part of the continuation of our society’s fear of disability. Everyone has things that make them different and if we keep weaponizing differences in people, we’re gonna be up a polluted creek. People with mental disabilities like autism are collateral damage especially women, women of color, and Black autistic boys.
I didn’t want to talk about my autism diagnosis at first out of fear that people would see me differently. However, I am someone with minimal support needs and a platform due to my activism work. I have a responsibility to be visible and fortunately, I don’t have the ability to understand societal shame! Woohoo!
Even while writing this, it took me a ridiculously long time because nothing feels whole enough to describe my experience with something I know as well as I know my eye color. The point is that I’m proud and happy to be an autistic person. The other point is that every system in our society failed me and it fails girls with autism every single day. Now that I know that, I will fight unapologetically for autistic people and people with disabilities in general because we honestly deserve better.