Several days ago, I found this, and became enraged: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action
So I wrote something, and posted it elsewhere. Now it’s coming here, with major additions.
I am one of your three million “missing” children.
Please read this article, then for the love of any god you choose read the comments, and listen to the only Autistics speaking…
Autism Speaks is an alarmist, ableist, fearmongering organization that seeks to silence my voice and the voices of my three million “missing” brothers and sisters, because we do not conform with the narrative that they are presenting. They support a medical ‘cure’ model for Autism, which boils down to eugenics policies against Autistic people. Autism Speaks is an Autism Advocacy firm without any Autistics in their ranks, which I hope says more than it doesn’t. They would be happier if I had never existed, and would be perfectly happy if no one like me was ever born again.
The picture painted within this article? The repetition of “this is Autism”? This is NOT Autism. Autism can be this, yes. But it is not only this.
Autism is your nonverbal son giving the very. Best. Hugs. to everyone he loves, and learning, late, at seven or nine or ten or fifteen or twenty, to write with such passion that you are moved to tears. Autism is your gifted, brilliant, talented daughter coming home crying because she has a hard time with social interaction, and can’t get along easily with the other kids. Autism is trying to speak, and the grate at the top of your throat closing fast and keeping your words prisoner. Autism is being asked a question and only being able to respond “Auh…?” Autism is being asked the same question on paper and writing an A+, three page essay in an hour. Autism is being told that your stories are amazingly imaginative. Autism is being told you must have no imagination. Autism is not knowing what to do when your classmate, coworker, shift supervisor calls you “retard”. Autism is this insult coming more frequently than anything else. Autism is being afraid to go to HR because “Well, he’s right…” Autism is being told that you’re broken and wrong so many times you start to believe it. Autism is the deep shame that comes with wetting your bed or your pants in a coughing fit at seven, or ten, or twenty. Again. Autism is knowing exactly what your body wants and needs at every moment, and being unable to turn off the newsfeed. Autism is knowing that if you laugh and sneeze at the same time, everyone will know.
Autism is “Books are my friends…” Autism is “Cats are my friends…” Autism is “Trees are my friends…” Autism is being afraid to ask people to be your friend, because people are cruel, and will only call you a retard. Again. Autism is learning your ABCs at three, and then being unable to progress until ten or twelve, because there is just to much else going on, and your chair hurts too much. Autism is the need to get up from your chair and spin on your toes to think of the answer to a question. Autism is the inability to stop yourself from spinning in the grocery store. Autism is being able to remember every bullet on a thirty-line shopping list — but only while I’m spinning, so please write this down. Autism is the world spinning around you. Autism is biting down on the only solid thing in the world to stop the spinning and the light and the sounds. Autism is scarring your knuckles with your teeth to keep your still point for just that moment longer, long enough to calm the rising meltdown long enough to get home.
Autism is having a bachelor’s degree and working as a janitor. Autism is locking yourself in the bathroom and sobbing several times a day at work because your supervisor is impossible. Autism is being blamed and publicly shamed when you nearly make a mistake because your supervisor failed to relay a change of instructions to you until you were about to open the now-alarmed door (that you had used earlier that day). Autism is getting home, collapsing, and screaming until you’re hoarse because you need to scream, or die. Autism is being “prone to self harm”. Autism is being clumsy. Autism is being screamed at for being a child, for being clumsy, for taking a turn around a corner too wide and knocking something off a shelf. Autism is crying for hours because you did a ‘bad thing’ and broke something. Autism is “How can you be so fucking clumsy?!” Autism is being terrified of clacking dishes together in the sink, because I am clumsy and if I break this I am worthless. Autism is struggling to control how your hands move.
Autism is seeing walls along the sides of sidewalks as elevated sidewalks made just for you. Autism is having perfect balance one moment, and tripping over air the next. Autism is living standing balanced on the balls of your feet, bouncing around your environment and jumping on and over things because it’s almost flying. Autism is being the worst in your PE class, and struggling to do your best anyway. Autism is being so, so grateful that the man who teaches it understands that you are struggling, and doing your best. Autism is wondering why certain fabric just hurts, or too much grease makes food inedible, or certain frequencies and intensities of light and sound just drive you into a panic.
Autism is “I’m having bad overstim right now, could you maybe not rustle your potato chips quite so loudly at me?” Autism is “Can you eat your rice crispies not in the kitchen? I’m trying to clean and the sound of your food hurts me…” Autism is living with someone for six months before being able to articulate these desires, because you are afraid of what they will say in return. Autism is being called blunt and rude for trying to be clear and firm in your needs. Autism is being unable to stand the sounds of your family — or yourself — chewing and clinking their utensils. Autism is being unable to just “get over it” or “grin and bear it” when things hurt like this. Autism is wanting to turn and punch the person who somehow doesn’t know how to mix things in a glass without ringing the spoon against the side of it for minutes on end. Autism is knowing that if you do, it will be your fault, and you will be punished. Autism is trying to “use your words” and failing because the grate is down again. Autism is being told you are selfish and whiney and bratty when finally, finally voicing your needs. Autism is being treated like a subhuman for needing to be away from the sound of smacking lips and clacking silverware, by a population that accuses US of being without empathy.
Autism is being struck dumb and unresponsive by a gift. Autism is staring blankly at the thing in your hands wondering why you were given it, even when you asked for it. Autism is knowing that the appropriate response for a gift is not the hollow and empty “thank you” we have been taught to imitate, but a hug and a nice meal, or a gift in return, or simply a rare, rare smile. Autism is being berated for unwillingness to conform to social niceties I find meaningless. Autism is never knowing what to say when people pay you a compliment. Autism is being told, over and over again, that you deserve no compliments. Autism is smiling blankly at the world because you were instructed to. Autism is smiling at stress because it’s what comes naturally. Autism is being screamed at for hours because “this is not an appropriate moment to be smiling!” Autism is being berated for not following a script you were never given.
Autism is being told you’re not trying hard enough when you are hanging onto the last frayed shreds of your rope just to try not to scream in public. Autism is expressing yourself through pterodactyl noises. Autism is being told you deserve no accommodations for the way the world hurts. Autism is ‘making a scene’ in the grocery store because the music is painful and it’s too bright and OH GOD THE WHOLE STORE SMELLS OF TIDE and you are seven and simply can’t. Autism is being told to knock it off time and again when ‘doing something completely distracting’ like spinning or walking circles around your mother and her cart simply to make the bad stim go away. Autism is trying so hard to knock it off that it all comes crashing back and all you can do now is scream. Autism is being able to smell the history of the public bus you have to take every day, and the people who rode it yesterday. Autism is knowing what kind of perfume your busdriver’s wife wears. Autism is being unable to turn off that ability. Autism is always making a beeline for the back of the bus, the seat over the right rear tires. Autism is being literally felled by the smell of Axe as a man sits down six rows ahead of you. Autism is needing to get off the bus and puke up what you were forced to eat for breakfast even though you didn’t wan it, because food was bad enough but now there’s AXE too and I just can’t. Autism is being able to pick out all the ingredients in a mulling spice by scent. Autism is never needing to label your spices or cooking ingredients, because you know what they are, and if you forget, you can just smell them and know. Autism is having a hard time taking a shower because it overloads your senses. Autism is not seeing the point in taking a shower because as soon as you turn off the water, you can smell yourself again. Autism is needing a brimmed hat all the time because sunlight and fluorescents are just too much. Autism is carrying a pair of earplugs because the street hurts to listen to. Autism is hearing the music of the human soul everywhere. Autism is having to listen carefully in order to hear the words you are speaking above the sound your soul is making.
Autism is the ability to quote paragraph and page out of your favourite book, within the context of the conversation at hand, without missing a beat. Autism is struggling to form words and sentences of your own, and using your library of quotes as the crutches that help you walk through the tasks of society. Autism is slowly learning to quote yourself. Autism is being too afraid to leave the house today, because my mental library is closed for maintenance, and I am mute without it. Autism is being forced to engage in interaction you find confrontational, terrifying and dangerous every single day with every single person you encounter in the world, simply to avoid being branded a liar. Autism is developing coping mechanisms on your own because “there’s nothing wrong with you!” Autism is staring at the space between your eyebrows, after a lifetime of being screamed at about eye-contact. Autism is being passed up for another job, because questions are hard and people are scary, so you choked in your interview. Again.
Autism is the willingness to accept others for their uniqueness, their oddness, their otherness, not in spite of it. Autism is a way of thinking differently about the world around you. Autism is growing up knowing no one around you sees the world like you do. Autism is knowing that there are bits about you that just don’t fit with what society wants, and not knowing what to do about it. Autism is knowing the pieces of your mind will never click into a ‘normal’ child. Autism is realizing that there are other Autistics in the world who *do* see the world the way you do. Autism is being completely, utterly alone. Autism is being millions. Autism is realizing that this is not something wrong, merely something different. Autism is all of the oddly shaped pieces finally, finally fitting together, all the little bits clicking into place. Autism is having a word for what makes you you. And me.
Autism is a spectrum disorder, meaning that no two Auties will have the same level of functioning at any point, ever. Today I am typing articulately, but I’m not sure physical verbal communication is going to be easy. I have yet to actually speak today. Three days ago I was nonverbal and making to-do lists to combat executive disfunction (Finish drawing, cook dinner, brush teeth..). Tomorrow, I may be able to pass easily as Neurotypical, converse fluently with people on the street, and then come home to collapse into a pile with a stuffed octopus and some calming scents. In highschool I was just considered “weird” and “emotional”. I had breakdowns and meltdowns and every once in a while just screamed for half an hour curled in a ball because everything was just too much, and I had no words to articulate how this was so. Autism is meeting people like you for the first time, and being told that they were different from the rest of humanity. Autism is suddenly having a word for the difference you’ve lived with your whole life. Autism is the horror on your mother’s face when you joyously go to her saying “Mom! Mom! I think I’m Autistic, can we get me checked out?” knowing that suddenly things were fitting and meshing and the world was not looking quite so scary. Autism is “No, you’re perfectly normal! I was odd in highschool, too…” Autism is bowing to authority, and shutting up, because that is all you have been trained to do. Autism is being told that you’re ‘just odd’ or ‘perfectly normal’ enough times that you forget that there is a word for your oddness. Autism is remembering that wait. That. That’s a thing. That I have. Right. That’s a part of that thing I have.
Autism is so much more than all of this.
Yes, rates of Autism diagnosis are rising, but not because Autism is becoming more common. We were here all along, you just couldn’t recognize us. The reason that there are so many more Auties walking around breathing your air today than there were in the fifties and sixties, etc, is because we have gotten better at recognizing Autism and applying the diagnosis.
Autism is articulate, and can speak for itself. Will you listen?