Autism, Cures, and the Right to Exist

When I first found out I was on the spectrum I was elated. I had finally found the answer to explain why I was different; why I had so much trouble relating to my peers and understanding how I fit amongst them.  I believed for so long that I was stupid, because I take longer to find my words. I thought I was a talentless worthless nothing because my peers, teachers, and even my very own Mother taught me I was to blame for my difference. I learned from a young age that my sensory avoidance was actually just my, “being a brat,” I was, “spoiled,” I was to blame for all that ailed me. I did not have the words then that I do now, sensory aversion, sensory processing disorder, hyperacusis, neurodivergence, high visual intelligence, selective mutism, and many more terms that very clearly label and define my difference as a variant of human being. I was elated because finally . . . finally I had the answers to the question that other humans bade me ask; what is wrong with me?

I asked this question because I was teased from a very young age. When I started preschool I was asked by my teachers, “what is wrong with you?” I was physically attacked by them when I wouldn’t sit still for nap time, or I spent too long to put on my coat because I was lost in the beauty of how the girl in front of me in line heading out to the playground had the most beautiful curly hair. The sun reflected through the window off of each curl and it was quite possibly the most beautiful thing I had ever seen. Teachers had no time for a girl lost in the stunning beauty of the mundane, no, to them I was wrong and I was broken. I was yelled at and sent to principal’s offices where I could not speak. My Mother was called endlessly from school where I sat feet swaying above cold floors in the office seperated from others because I refused to assimilate. I would stare at all the lines in the tiled floor and count the tiles. I would see all the little places where the janitor’s broom had failed to sweep that last bit of scrap paper. What a sad little piece of paper too small to be noticed, to meek to be given any attention at all with no voice to demand a purpose. That paper was just as I, forgotten, mute, small, and useless. This is what I learned in primary school when I lacked the words to advocate verbally for myself. And when I was not suffering from selective mutism, oh, the words that would tumble uncontrolled out of my delighted mouth. But fear taught me it was better to keep it silent because peers and adults were not to be trusted. This fear was taught to me. I have lived my whole life with this fear. “Assimilate or be abused and forced to assimilate.” I was shouted at in halls, “freak, faggot, and f-ing weirdo.” I had no idea why it was that I was singled out. I did not understand.

I asked for help. I told the principle when I went to his office how the kids bullied me. He did not believe me because in a case of one versus many, the weirdo is easier to blame. I was threatened with suspension lest I ask again. I could find no help at home where I was also bullied into submission. I refused to take showers because the feeling and the noise was just too much. None of us knew that I was autistic. Girls were not known in number to be on the spectrum and no one sought out answers to the why’s that I asked myself everyday. I resigned to just being me no matter what. I knew that I could not change who I was and the whole world seemed to think they knew better than I as to what I needed. I lacked the words but I knew how to keep myself safe. I knew what I needed even if no one around me seemed to agree or understand. So, I learned to hide behind a mask, maybe more than one. My mask was either quiet, non-verbal, or apathetically defiant. I dyed my hair. I got in trouble but I didn’t care because I was in trouble for being me anyway, so what did I have to lose? I embraced my shadow and learned to love it. I owned my badge as freak and I let that flag fly freely when in the presence of friends, and I learned to blend in for survival as best I could when in the presence of others, which was a feat I did not master for a long time.

I was attacked by bullies until I could take not more and in a rage meltdown I attacked back. The outward aggression towards me in the 8th grade stopped being so blatant but the underlying feeling towards my peers in school at me was not safe. I had to watch over my shoulder for fear I would be attacked and knew that teachers nor principles would aid me should it happen, and I knew that I would be to blame. So, I learned to hide, to blend in, to avoid, to disappear within myself surrounded by a world that told me over and over that I was a freak and everything I did was wrong. I learned from them, that I was wrong.

I grew up. I became an adult. I found my first love and freedom. Even through that love I did not know that I processed sensory information differently so I had no tools to help me through jobs, city streets, through restaurants, crowded subways, and love relationships. I found friends that didn’t mind my eccentricities. I worked in art stores and played in bands. I let my freak flag fly, but in the bank, with my bosses, or in professional settings, I found it very difficult to hide. I have very intense sensory processing disorder. I meltdown at too many sounds. I run away. I go non-verbal. I literally shut down when more than one person is talking so I did not keep many jobs for very long. I became homeless and lived in my car. I fell forward in my life not knowing why I was so bullied, ostracized, neglected, rejected, hated, and abandoned by so many. I learned to hate myself too because who wouldn’t? I knew I was horribly misunderstood but I lacked the words to explain my experience until I found autism. This to me was a gift. This to me allowed me to be proud of who I was because I finally had the reason why I didn’t fit. I finally had the answer to the why. And the most glorious thing is that I knew there was nothing wrong with me. I just had a different neurology.

I was on a mission at that point to help others like me find their true selves. I became an autism acceptance advocate and started sharing my experience so that no other little autistic girl had to go through what I went through. I wanted them to know what I so desperately needed to know then; that it is absolutely okay to be you, no matter what anyone says. You’re just different, not broken, to blame, or somehow a lesser version of a human being because of your difference. I wanted to give them the gift of acceptance I never had as a child. That is until I found out about autism speaks, and some autism moms, the medical model, and the cure culture that all autistics like me face.

I was horrified to discover that upon finally accepting myself in all my different glory that there was an entire establishment devoted to literally eradicating my kind from the planet. I learned that autistic children were some of the first people killed in the Holocaust for their differences. I realized that had I been alive then I very well may have been one of those children. I learned that there is an entire billion dollar industry to find a cure to what I admantaly believe, and is substantiated by scientific fact, is a neurological difference and not a horrible broken life. And I have learned all about how people invalidate my desire to not be cured because I can function according to their judgemental observational estimation. I know that autism and autism research is one of the most controversial topics of our time, but I also whole heartedly believe that I am absolutely who I am meant to be.

I can play 9 instruments. I can draw a portrait just by seeing a face a few times from memory. I am a silver-smith, a poet, a writer, I have traveled, I have loved, I have lived a life that despite all the odds I am proud of and I love who I am, but I am also completely aware that there is an entire movement devoted to discovering the gene that creates people like me; beautiful, loving, different versions of humanity that deserve love and respect and above all . . . life. If this gene is discovered it is very possible that parents will have the choice to abort babies like me. That is horrifying to me.

The vast majority of people believe that autism is caused by vaccine damage, is a disease, or a broken version of humanity, despite the myriad of research that shows that variance in neurology is quite common in many species. It has been proven time and time again that autism is a natural variance of the human brain and yet, there is an entire eugenics movement devoted to discovering the gene that cause autism and the giving parents the option to abort their child lest they are autistic. There is an entire movement devoted to not vaccinating their children lest they wind up autistic even though it has been proven time and time again that vaccines do not cause autism and that most of the autistic people I have met can trace their genetically inherited neurology back generations before vaccines. There is a movement literally trying to wipe my kind from existence because they do not see us as a variant of the human species, but as a broken version of what human is supposed to look like. To them our difference needs a “cure.”

I know that there are those autistic individuals who suffer greatly at the cost of their autistic comorbidities. We autistic people have many conditions that also seem to appear with our neurology. I have auto-immune disease and SPD. But my SPD gives me that ability to play any instrument I touch and to get completely absorbed and lost in sound and the way I see gives me talent with visual information in the arts. I am half in and half out of this reality. I know that I get lost in my head and struggle often to find the words, but I also know that my life has great and important value. I know that I have touched the lives of many and that I absolutely deserve to live on this planet, but I also know as an autistic adult that there is an entire industry devoted to curing and eradicating my kind and I have been in mourning for a very long time trying to come to grips with the fact that I have no idea how to tell those fighting for a cure to please listen to actually autistic voices instead of invalidating us. Why is it so hard to believe that we want to live as we are? Why is it so hard to believe that we know what best helps us when we are in sensory overload? Why must we fight to be heard in a world that has decided our fate without listening to us, true born autistics?

I know that this is not an easy topic, but I do not know how to face a world that wants me to be eradicated and “cured” when I love my life, as I said, despite all the hardship I have had to endure. I truly believe if we had more awareness and people accepted us a different and not broken, we may be free to exist as we are, sensory processing issues and all, because we deserve to have our version of a life on this planet.

I am amazed that after the elation I felt at discovering there was an answer to the, “why am I different,” question that I am now faced with using my voice to convince an entire medical establishment to please stop trying to cure me. There is nothing wrong with me. I am just different. If I were in the womb and the gene was found that causes autism, I may very well have been aborted to save my parents the hassle of having a broken child. This is not the state now but it is a possibility in our future. I am seen as a less than and broken person that has no voice even though after a lifetime of abuse and silence I have finally found the bravery to speak, and I am so sad to have to use that power to say, please don’t cure us. Please don’t fear us. Please don’t spread lies about us and how horrible it is to have a child like us. Please listen to actually autistic adults about our experience in this world and how absolutely valid it is for us to exist. Please stop donating to charities that our community is against. Please stop invalidating us because we are not like you or your child. Please stop comparing autistic adults to autistic children. Please stop saying we don’t look autistic. Please allow us to exist as we are without imposing therapies that teach us that our no is meaningless. Please stop bullying us and denying us our right to speak by invalidating our experience. Please don’t ever cure me. My mind is a beautiful thing and it has every right to exist just exactly as it is.

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