SPEECHLESS_a walk in my shoes with AFOs_

tw – physical, sexual, and caregiver abuse, ableism, self-harm, and mental health.

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I screamed for 37 minutes this morning because I wanted to wear my Cheetah t-shirt. My aid put on my plain gray one, but I didn’t want to wear it. She didn’t see the point in changing me, even though it is my shirt and my body she is putting it on. I am 27 years old, but my aides cut my hair short so I can’t suck on and eat it and they cut my nails without asking.

I screamed, but I didn’t even try to. I cannot control my body. I cannot control my mouth or my hands. My aides have held me down so I didn’t break my ribs when I had a meltdown, and I hit my head when I get upset and I bite and spit on people when I am afraid. I don’t try to do it. It is not my mind, and it is not my body. It is the connection between the two.

I cannot speak. People think this is because I don’t have words to say, or I don’t know how to make words, or I am too dumb to think. My parents and teachers and everyone around me thought I was brain dead until I was ten and learned how to use PECS, which means I pointed to pictures like “toilet” or “food” instead of getting so frustrated that I was trapped inside myself that I melted down and hit things.

I cannot speak, not because I am dumb, but because my brain does not know how to tell my mouth to speak. I know in my head what I want to say, and there is nothing wrong with my mouth to say the words, but the coordination between the two doesn’t work.

If you woke up with the body of the best gymnast, and you had seen them flip across a balance beam, so you knew which way your legs were supposed to twist and turn, that doesn’t mean that as you stood on the mat and looked at all the shining lights and roar of the crowd you could actually do it. You couldn’t actually make your body fly and jump and hurl through the air like you imagined. You just couldn’t.

In the same way, I have the words in my head, and I know what my mouth is supposed to do, but I cannot make my mouth do it. I am trapped.

I am nonspeaking. I am not deaf. I am not dumb. I am not brain dead. I can understand every word you say, I just can’t respond to it. I might even be smarter than you, but you’ll never know if you don’t give me the chance.

My life is a ritual. My life is one long string of events after another. I do something. Someone does something else. I am upset that someone does something else. I freak out. They freak out that I freak out. They do something. Rinse and repeat.

I have other rituals, too. I sit on the end of the couch when I visit my family's house. I walk around in a circle for hours and hours, my feet stepping in the same spot, over and over again. I rock back and forth, over and over and over again. Rituals. I get lost in motor loops, like making a circle to feel the texture of the wall–little bumps that massage my hand–but I get stuck. I can’t stop myself. I just get stuck running my hand in a circle for hours and hours. I try to break free, but it ruminates and ruminates.

I live in a group home with other severely autistic people. Half of us are intellectually disabled. Many of us wear helmets so we don’t hit our heads and diapers because we cannot use the bathroom. When something unexpected or loud or different happens, they get upset and break things, which scares me. I have PTSD. I watch as everyone around me is abused and neglected. Our average lifespan is 36 years old. The people around me will die because they will bang their head on a wall or run away and drown or get hit by a car or have an epileptic seizure and fall down the stairs.

One of them cannot hold his own fork because he is always stimming–moving his hand. Another watches videos of hot wheels cars and goes catatonic and cannot move. I have been hospitalized because I am malnourished and dehydrated. I cannot eat food because there are too many tastes and textures at once, so I have to have a feeding tube in my stomach. I hate my feeding tube, but I am only 88 pounds so if it is taken out, I will die. I do not get my period because of Hypothalamic Amenorrhea. One time I did, but I screamed for two weeks and it was torture and I wanted to die the whole time.

One of the parents of a 32 year old in my home has to pay 400 dollars a month so he can have the luxury of communicating before he wets himself.

I watch as the people around me deteriorate into nothing and are forgotten and neglected. All of us have been abused. Some of the aides hit us and pull us across the ground when we don’t do what they want us to do. In some cases, we don’t want to do what they try to get us to, and we shouldn’t be expected to. In many others, we could not do it even if we tried. They don’t allow us to communicate with our families or misrepresent our communication when we do. They take pictures of us when they are dressing us and we are naked, and they touch us when they give us a shower or help me in the bathroom.

We are not human beings to them.

The real reason people want to say severely and intellectually disabled autistic people are brain dead is so they can stuff us in a group home and neglect us until we die. They no longer care about us when we turn 21, because we are no longer inspirational and they don’t feel pity like the misunderstood little kids in Special Ed. But Special Ed does nothing if the same kids grow up to never use their education.

But we do not need pity. We are not special. We will make you uncomfortable and confused and you are just going to have to deal with it. We don’t need pity. We need support.

Our lives are not valuable because we inspire those around us. They are valuable because we are human beings, just like you. We share only 90% of the same DNA with cats, and yet somehow severely and intellectually disabled autistic humans are different enough because a few of our genes are altered.

Those around me are frustrated with my existence. I am not “living with” or “affected” or “experiencing” or “impacted” by autism. I am autistic, and the groups started by autism mom’s cannot even recognize that. But I don’t have time to be upset by that because I care more about bigger problems, like being tortured by the institutions or starving to death. I do not have the privilege of caring about “autistic person” or “person with autism” like my verbal counterparts on the internet whine about.

People won’t even talk to me and I don’t have a single friend. They talk to my parents or caregivers or siblings. Anyone but me.

They are frustrated that I cannot explain to them what hurts when I am sick, but I can't even explain it myself. I cannot tell when I am hungry or have to use the bathroom, and I definitely cannot tell you what part of me hurts. My therapist has to poke my back and ask me where she poked me, but many times I can’t even tell because my brain doesn’t communicate with my body like it should.

If I don’t move my hands, I lose where they are in space. If I hear a car honk I scream for two hours. I bury myself in a weighted blanket, but no matter how much I try, I am always in sensory discomfort. My vestibular system–the part that recognises balance–cannot regulate itself, and I can feel every muscle on my face move. I hate the sound of my vocalizations echo through my ear cavities. It feels like my head is a bike helmet that is strapped on too tightly. When I walk, it feels like I am wearing an astronaut suit as a construction worker walking across a beam on a skyscraper.

I feel like I am an alien on Earth, completely unsuited to this environment.

They put us in therapy to make us less of a burden so our parents will be happy. They put us in therapy to suppress our stimming–our repetitive motions like rocking back and forth, our form of emotional regulation–and dare to be surprised when our “problem behaviors” get worse because we cannot control our emotions.

My mom divorced my dad, and the “experts” call it my autism’s fault. My mom complains that she never got to do normal childhood things with me, like seeing the Grand Canyon or amusement parks, when she was the one to put me in 60 hours of therapy a week and wondered why my stress caused me to meltdown for hours every day. If a 13 year old got a job for 40 hours it would be child labor, but if an autistic 3 year old is in therapy for just as long, or longer, it is for their own good.

They put us in therapy for our parents.

They put us in therapy for our teachers and caregivers.

They put us in therapy for our brothers and sisters. 

They put us in therapy for everyone but ourselves.

At best, they give us meaningless cartoon faces and ask us to identify what they are feeling, a complete waste of time. They need to show me Bluey and ask why Bingo was upset, or why Calypso got in an argument with Bluey. They need to ask us why Bandit was confused or Bingo got upset when Bandit didn’t see her inchworm. They need to give us real life explanations for things that happened and things that will actually affect what we do from day to day.

They need to give us the experiences that the therapy they give us is meant to help us do.

Clicker training on how to sit at a table or brush our teeth in a system based in compliance that, when least harmful, rewards “good” behavior and, on the other side, punishes “bad” behavior–behavior we cannot even control–is not and never will be enough. Communication should be taught first. Communication is a human right.

But that isn’t even the worst.

Whether in this group home or other institutions, my friends and I have been drugged by our aides so they can get a break from taking care of us. They lock us outside or in closets and isolate us so they don’t have to deal with us. They don’t change our clothes or they spray us with hoses instead of giving us a shower. They withhold our AACs or other medical devices and food and medications. They withhold items that calm us down for non harmful behavior. They take away our pillows and blankets and they don’t let us sleep in our beds.

They connect us to electrical shocking devices. 

Don’t pretend that this is in the past. Don’t pretend that because the calendar switched to 2023 this isn’t an issue anymore. It is and always will be an relevant as long as our communication is dependent on anyone other than ourselves.

And for the therapy that actually helps us, believe me when I say that our painful and harmful behaviors hurt us more than it could ever hurt you. We are the patient, our parents are not.

I will never stop watching kids cartoons, and that is okay. Don’t stop me or feel bad for me. If you are going to feel bad, feel bad that we are restrained when we have meltdowns, which can cover our esophagus, pinning us to the ground and killing us.

I will never date or get married. This is okay. I never want to have sex and romance doesn’t make sense to me. Don’t pity me or revel that you aren’t like me. If you are going to pity me, pity that I am obsessed with Cheetahs but I will never be able to leave my group home to see one in real life.

I don’t want your pity, but I do want your understanding. Understand that I can never go to college, even though I want to and am definitely smart enough. I want a job so I am not constantly lonely and bored. Understand that if I ever did get one, they can legally pay below the minimum wage for disabled people. Understand that I’m funny and witty and kind and I know more about Cheetahs than anyone I know.

Understand that typing for me is not like typing for you. I cannot begin to explain the depths of my feelings, because just as my brain does not connect with my mouth to speak, it does not connect with my hands, either. Imagine typing but you have to keep switching from Mandarin to German to English to Korean, and you are holding your breath and floating underwater and you are drunk and hungover and skydiving and mountain climbing all at the same time.

Now you can understand that my typing is only the beginning of my intelligence, and that I have so much more I want to say, want to share with the world.

The smartest person of all time was not Albert Einstein or Isaac Newton or Thomas Edison. They were not Galilao or Leonardo Da Vinci or Benjamin Franklin. No, the smartest person in the world was born into poverty and died into poverty. Or got measles or tetanus or rubella and passed away before 20. Or was not allowed to have an education because she wasn’t a boy. Or was born into a brain that cannot regulate or communicate with its body, and was institutionalized, never to be heard from again.

I’m tired of other people telling my story. I’m tired of other people–psychologists, autism mom’s, BCBAs, lower support needs autistic people, or anyone but me–telling me how I should feel or what I should do or in any other way influence my story. I am tired of that ritual. I am tired of being spoken for. I want to speak for myself. I am tired of other people deciding that I can’t choose my Cheetah shirt.

I’ve decided to form a new ritual. My ritual. I will write when I am able to. I will write on the days I can get out of bed, out of the cocoon of my weighted blanket. I will write, even if no one listens. I will write, even if no one cares. But I will write, because I need the world to understand how I feel, from my point of view. Just because I cannot speak does not mean I don’t have a voice.

So I want to tell you this, dear reader, so you can get where I am coming from:

If you walk a mile in my shoes, you will do it on your toes, as the feeling of the ground overstimulates you and you want to feel as little of it as possible. Some time within the mile, your aid will strap on AFOs which will force you down on your feet. On the way, you will go past Special Ed programs meant to segregate you from the rest of society, sexual abuse from your own uncle who has mild autism himself, knowing you couldn’t tell anyone about it, a society of people convinced you cannot succeed, and a body that consistently implodes.

It won’t matter that you are nonverbal, because my experience will already make you speechless.