Autism Communication Experiences Sensory

My Autist Manifesto7 min read

"I have seen the shadow of doubt, and I went out and bought a floodlight with extra batteries."

I declare my emancipation from what you may think of me. 

I declare my freedom to act according to what I know. 

On Empathy:

I see you; I hear you!  I know what you are feeling.  I literally feel what you are feeling, but it doesn’t show in my face. 

If you are hostile, I feel it in my rigid neck muscles and in my churning guts. 

If you are nervous I feel it like a hot ball in the pit of my stomach. 

If you are sad I feel a burden pressing on my shoulder blades. 

If you are happy, I feel my chest relax and expand. 

If you are sick and in pain, I feel as if my lungs are clogged, and I can’t breathe. 

If you are angry I feel tension in my thighs and my jaw and my scalp. 

If you are frustrated I feel it in my tight throat. 

Don’t expect me to imagine what you are feeling.  There is no need for me to imagine it because I have already felt it.  All I have to do is be in your general vicinity. 

Besides, I don’t know how to imagine other’s feelings, because I think in pictures.  I think it’s funny that ‘normal’ people who have to reason out what other people are feeling through extrapolation have decided that autistics are not empathetic because we show no ability to extrapolate what other people feel.  Funny, but really sad. 

Why should I extrapolate, when I actually experience your emotional states?  The problem is that I don’t know what made you feel that way, and I don’t have a clue what to do about it.

On Hyper-awareness; or Super-consciousness:

On to the next little item.  I have been forced to conclude that most people go through their lives wearing earplugs, pinhole goggles, and with their whole bodies wrapped up in bandages like a mummy. 

How did it come to be a disadvantage, and even to be labeled a disorder, for a person to see every detail of their surroundings, to hear the faintest of sounds with clarity, to smell the most delicate of scents, to feel the slightest touch on their skin? 

Just try to imagine what it would be like for you if you lived in a world in which everyone else’s senses were deadened.  What if everyone’s hearing was so dull that they turned up the volume on everything before they could hear it at all? 

What if their sense of touch was so weak that they couldn’t feel that the fabric of their clothing was as slimy as snot, or filled with sharp microscopic needles? 

What if their noses were so feeble that they couldn’t smell anything but the most toxic fumes or the most cloying perfume? 

What if their eyesight was so poor that they couldn’t see anything but vague, blurry outlines of things? 

In that same world, wouldn’t you be wincing from ear-shattering bangs and squeals?  From thumping car stereos and tinny restaurant music?  From echoing, chaotic spaces like museums and exhibition halls? 

Wouldn’t you be gagging from all the foul combinations of odors that you smell?  Wouldn’t you be frantically squirming away from the touch of your scratchy or slippery clothes?  Wouldn’t every scrap of greasy litter, every snarl of tangled wires, all the dreary storefronts, every tattered flag in every used-car lot, and all the crass, flashing neon billboards on every freeway you ever saw make you cringe and flinch at all the dismal details of what you see?

Social Skills:

Imagine that every communication you receive is in a constantly-changing code that you must unremittingly remember without writing it down. 

Imagine being expected to instantly decode every incoming transmission, while simultaneously encrypting and transmitting outgoing ones, with your supervisor standing next to you tapping their foot impatiently. 

If you falter, suddenly everyone in the room is looking at you, and someone says, “What?” and someone else whispers, “Wow!” and rolls their eyes.

I have seen the shadow of doubt, and I went out and bought a floodlight with extra batteries. 

I think outside the box because I can’t even see the box! 

You go ahead and box up your notions and gift wrap them if you like—but if you give them to me, I guarantee they won’t fit, and I’ll have to return them for a refund. 

I have friends.  I just like to hang out with them one or two at a time.  Lots of people together make too much noise, and talk all at the same time. 

My friends have finally learned not to invite me to a dance club or a big show, and not to get hurt if I don’t want to go to their kid’s birthday party at Chuck-e-Cheese.

Anxiety:

I have no comfort zone.  Guess what that’s like! 

Anxiety and I are partners in adventure.  Guess how many times I want to run for cover?  Never mind, you can’t! 

Nothing is safe. 

Nobody is safe. 

Nowhere is safe. 

I walk on a transparent floor every minute of every day, in a house with see-through walls.  Imagine what a master of trust I must be! 

Imagine, if you can, what this is like: Your eyes are wide open, light is flooding in, and still you can’t tell where the floor is, where the walls are, or if that little blip—that waver of edged light in the corner of your eye—is really a doorway. 

Imagine not being able to tell if you are looking out of a window, or into it. 

Imagine that the behavior of everyone you meet is utterly unpredictable.

Imagine that every door you go through may lead to a place you don’t recognize.

Imagine that every gathering of people may suddenly begin speaking a language you don’t understand.

Imagine that every project may yield unforeseen complications that cannot be deciphered.

Imagine that you want to ask for help but cannot figure out how to describe the problem.

Imagine that when people ask you a question, sometimes you understand the words perfectly, and still can’t tell what they mean.

Imagine carefully fashioning your expression, tone of voice, and word selection in order to express your meaning, and realizing as soon as you start to speak that you are being hopelessly misunderstood. 

What then?  Just stop talking?

Reasonable Accommodation:

Try this: imagine that you must use a wheelchair, but it’s invisible, and every time you push the magic handicapped-door-opening-button, people look at you resentfully. 

Imagine that your friends get annoyed with you every time they run up the stairs and leave you behind, looking for the ramp or the elevators. 

Imagine that when you stop dead because the doorway they just went through is too narrow for you to get through, they roll their eyes and say, “Give me a break!”

Imagine that when you start to mention the little problem of your wheelchair not fitting where they want you to go, they hiss with exasperation and say, “Not that again!”

Do you see how you would be left with nothing to do but face the bitter truth that all the hard work and careful crafting you put into your ‘prosthetic personality’ is exactly why your wheelchair gradually got more and more transparent and harder to see? 

Even well-meaning people have a hard time believing in things they can’t see, or trusting another person enough to accept something for which they have no evidence.

All the creative genius that I put into creating my ‘prosthetic personality,’ and all the success I have achieved, is nearly always diminished by the impenetrable ineptitude of the phrase I hear so often: “But you don’t look autistic!,” or worse, this callously offensive nugget of intuitive arrogance:

Trust me, you’re not autistic.”

How about this?  I give you my permission to think of me as a dog.  You are a pet lover, right?  Everybody loves a dog. 

So, tell me…..what would you do if you saw a dog backed into a corner and barking? 

Would you go over and bend down to tell the dog, “Get over it.”?

Probably not. 

Would you tell the dog, “You’re not really frightened.  I can tell because you’re barking, and your tail isn’t between your legs.”? 

Not likely. 

Would you tell the dog, “You could have a caring owner if you would just try a little harder!”?   

I doubt it. 

Lucky for you, because if you said those things and the dog understood what you were saying, it would probably bite you just to escape from you. 

So please don’t tell me to get over it, or that people would get along with me better if I would just try, or that I’m not on the autism spectrum because I don’t look autistic, or that something that I am having difficulty with is really easy, or that everything is going to be okay.

That way I won’t have to muster all my patience just to keep from punching you in the nose so I can escape. 

Easier on both of us, wouldn’t you say?

3 comments

  1. I am absolutely sobbing right now because you have so so beautifully and clearly expressed exactly how my daughter experiences the world.  And ALL of the reasons I carry so much resentment and anger at the way she has been treated by her “friends” her entire life.  Oh my heart.  Thank you for writing.  THANK YOU.

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