This is a re-post of the blog entry I wrote for the first Autistics Speaking Day on November 1st, 2010. Ironically, I took that post — and everything else in my blog — down just a week later because of a bully who was threatening to “out” my disabilty status in my department at my university. I was afraid that I would lose my position if people knew more about my struggles so I removed all the content of my blog and went into hiding.
But now I have outed myself and no longer fear what a bully can do to me. I re-read this entry that I wrote for the first Autistics Speaking Day, in reaction to the first Communication Shutdown. And want to share it, both so it can be online again and because I don’t feel I could improve on it. I could write something different — and I will next year — but this is one of the better things I’ve written and I just want to go with it this year.
So here it is: my entry for Autistics Speaking Day 2012:
When I was nine, a poet visited our class. We each had to write a poem for her, titled “I Am.” Mine contained the lines:
I am a dove who once knew the range of the cosmos.
Now my wings are clipped and my heart aches for flight, a freedom taken for granted.
I am a nightingale. Scoffed and scorned, I no longer sing.
I am a mountain that fell and became sand.
This is why I instinctively recoiled when I first heard that people were planning to abandon social network sites for one day in order to raise awareness of autism, show solidarity with non-verbal autistics, raise money for autism charities, and experience for a day what it must be like to be autistic.
You will not experience what it is like to be autistic by turning off your computer for one day.
And I am highly offended by the idea that I can only show how important autism and autistics are to me by shutting up. I’ve been asked, told, and bullied into shutting up all my life. I am tired of being the nightingale who cannot sing, the dove whose wings are clipped, the mountain that has been ground down into sand by prejudice and cruelty and rejection.
I will speak!
If you want to know what it’s like to be autistic . . . well, I can’t tell you that because we’re all different, but I can tell you how to experience my autism for a day.
Be hesitant to leave your house. Your house is the safest place you know. If someone unexpectedly rings your doorbell, jump into the air with a startle reaction and feel your bowels turn instantly to water. Consider disconnecting the doorbell, even though it means people would still come and knock on the door, because the sound is so grating, so loud, so terrifying that you feel adrenaline-ill long after it’s been rung.
Leaving your house requires preparation. Not just bathing. Not just selecting clothes. You will have to spend time talking yourself into it. Every day. Every time you go out, you have to start preparing hours ahead of time with self-pep-talks and running through possible scenarios in your head so you will be prepared for every eventuality.
Because of the time and energy this costs, expect to only be able to do one major productive thing per day. If you have to spend hours talking yourself into going to class, don’t expect to have any batteries left over for working on homework. If you have to spend hours talking yourself into going to the grocery, don’t expect to be able to do dishes or other house work while you’re prepping yourself to leave the house. Many people’s to-do list is full every day. Some people are more practical and put only three or four things on their to-do list. You are only allowed one thing on your list so make it count.
But it’s not all bad here in my life. And it’s not all restriction from functioning the way people without autism function. If you want to know today what it’s like to be one, specific autistic — that is, me — I have to ask you:
Have you ever spent half the day lost in the beauty of how water moves?
Have you ever caused those around you to marvel because you could hear the phone and announce an incoming call before it rings?
Have you ever sat on a high bluff, watching a mountain lion stalking through the rocks and sagebrush, watching the rabbits flee before her like sparks shooting out of a log popping in the campfire?
Have you ever firewalked, overcoming the emotional resistance to walking on hot coals simply and easily with the logical thought that since others were doing it, you could too?
Have you ever solved a Rubik’s Cube in less than a minute?
Have you ever heard someone recite a five minute long poem for the first time and repeated it back to them afterwards, perfectly?
Have you ever played in a drum circle of more than a hundred drums, feeling the rhythm pulsing through you so strongly it replaced your own heartbeat, feeling at one with everything and perfectly attuned with the people around you with whom you could never have connected so deeply through the words and gestures of common social interactions?
Perhaps you have felt or done or thought some of these things. But that does not teach you that autism is “just like everybody else.” To paraphrase what author Rudy Simone says, “everyone visits sometimes; we live there.”
So maybe you know a little bit about what it’s like to be me when you get lost driving through a strange neighborhood. But I live that topographical agnosia every day and not just in strange neighborhoods. I get lost in buildings I’ve been entering for years. Catch me on a bad day and I will get lost in my own living room. No kidding: I’ve stood there before, thinking, “I know the people who live here” as I looked at my own home, rendered foreign by a combination of exhaustion and unusual brain wiring.
Maybe you know a little bit about what it’s like to be me when you stub your toe. But I live that dyspraxia every day and am covered with bruises from falling down or falling against things. I have enough balance to pedal a bicycle but have to use an old step-through frame from the seventies because I can’t throw one leg over a bicycle without falling down.
And even if you do know a little bit about what it’s like to be me with the autism and the dysgraphia (difficulty handwriting) and the prosopagnosia (can’t recognize people’s faces) don’t make the mistake of telling me, “oh, just keep practicing and you’ll get better at that.” You have no idea how much practice I have put in. You have no idea how much study and effort I have put in. You look at me and see an unpolished normal person who just needs to work a little harder. What you don’t see is the amazing victories I accomplish every day. What you don’t see is the way I have risen to challenge and fought the good fight and really pulled myself up by the bootstraps.
Because all the work I have put in has only suceeded in making me appear flawed in your eyes instead of disabled. I have worked so hard and accomplished so much only to be told that if I work a little harder I might measure up to mediocre. This is something you really need to understand if you want to know what it’s like to be me, one autistic girl, trying desperately to find a place of safety and comfort in this world.
Understand this: only 15% of us are employed. If you want to know what it’s like to be autistic today, my experience is as good as any other — imagine getting a job and working hard, coming to work on time every day, learning your responsibilities quickly . . . only to be fired in a week or two because “it’s not working out” or “we hired more people than we needed” (as you see them training someone to do your job when you come to pick up your last check) or “you don’t mesh well with our team” or any of countless other non-answers that don’t tell you what you did wrong, what you need to try to change.
Have you ever slept in the park? On a loading dock, closed for the night? During the day in a restaurant bathroom stall, sitting up on the toilet and grabbing as much sleep as you can in the safest spot you can find?
Have you ever eaten out of a dumpster? Would you know which restaurant pours bleach on the food before it throws it away so that no one can eat it? Would you know which restaurant throws away a trash bag of sandwiches still in their wrappers?
Have you ever picked up bottles so you could turn them in for the deposits and finally eat?
Have you ever gone days without eating?
Have you ever been so hungry that you waited for the delivery truck to leave bread in front of the grocery so you could steal some, all the while weeping at being reduced to crime in order to survive?
These things can be as much a part of the autism experience as IEPs and mutism. These things have been part of my autistic experience.
Do you still want to know what it’s like to be autistic?
How about this? You enter a room of people and they’re having conversations and you want to join in but you can’t pick the words apart so the whole room is filled with a nonsensical “blah blah blah blah.” Someone turns to you and starts talking and you can’t understand it past the blah blah of the whole room but you’re reading their lips and then halfway through what they’re saying, they turn their head away or cover their mouth with their hand and you lose any point of reference.
You try to respond to them anyway, but talking when you can’t hear what you’re saying is like pouring novocaine into your brain and you can’t do it. Oh, and by the way, people are always shushing you, telling you you’re talking too loudly. You can’t tell, though, because sounds get all muddled together in your brain and you can never properly hear what you’re saying with all the noise in the world banging at your head.
You want to listen to the class lecture, but someone coughed and someone else rattled a piece of paper and someone else shuffled their feet on the floor and there’s no way you can follow the professor so hopefully the textbook will have everything you need to know.
You want to watch television in the waiting room but the child next to you asked his mother a question and the door keeps opening and closing and people are moving around and someone smells really strongly of some kind of cologne that doesn’t smell like fragrance to you — more like having rubbing alcohol poured into your nostrils. And so you can’t hear the television and feel too antsy and desirous of escape to even focus on the pictures.
You want to go check your mailbox but there are people out there and you’re not ready to face people with their strange demands and their unexpected questions and their judgments and mocking. So you wait until 3 am to go take out your trash and see what mail you got that day. And you savor the chill night air and the bright stars and take note of the position and phase of the moon and wish you could float up into that blue night sky and hover amidst all the beauty and escape the chaos and pain of a world you have never felt you belonged to, not even before you knew what . . . or who . . . autism is.
Because you don’t have autism; you are autism. It is not something laid over a normal person, it is your person. It is your brain. It is your thoughts and perceptions and desires and being. You cannot draw a circle around part of yourself and say “here there is autism and everywhere else there is not autism.” It is who you are and it is beautiful and painful and joyous and tragic and challenging and fascinating and real. Every day. Every minute.
You still don’t know what it’s like to be autistic . . . unless you are autistic. But I’m glad you stopped by today because I think you might have learned more about living with autism from briefly stepping into my life in your mind, through my words, than you would have learned in a full month of turning your computer off. Happy Autistics Speaking Day to you and thank you for caring enough to keep your computer turned on today.