11/23/2013

What is autism?

In response to Autism Speaks' offensive call to action, a variety of autistic writers and parents of autistic children participated in a flash blog event called This is Autism. They showed the world the broad spectrum of autism through text, photographs, and art. We met everyone from nonspeaking toddlers to fluent adult college students, parents, and teachers. Given that there were hundreds of posts, a casual reader curious about autism might not know where to begin.  So, here follows a summary of what I consider to be the most important and interesting ideas.  If you're interested, you can read more on the This is Autism Blog.

1. First and most importantly, autism isn't some menacing entity out there, or something you can put in a bottle on your shelf. It's just a word for a group of people--one whose members share the same basic emotions and needs other people have.

Adkyriolexy writes:
"I need to go to the post office to mail a package. This is autism.

I also need to pick up groceries to cook dinner tonight. This is autism.

I'll probably spend this chilly evening reading under a blanket. This is autism...

I spent much of this afternoon spending too much time on Facebook. This is autism.

I love my husband with all my heart and I adore my children with my every breath. This is autism.

I am drinking a  glass of Diet Coke. This is autism.

But don't non-autistic people do these things too?

Yes, they do, but right now I'm talking about an autistic person (me) doing them.

But what about flapping and not-talking and sensory pain and social awkwardness?

Those things are autism, too.

..."Autism" is not a substance unto itself. You cannot have a jar of autism.  "Autism" is an abstract noun used to describe a type of person.  A type of person with a certain shape of brain, certain traits, yes, but who still has every human attribute of personhood...

The elimination of autistic people means the elimination of autistic children screaming, and the elimination of autistic teenagers building robots, and the elimination of autistic men playing piano, and the elimination of autistic children fingerpainting, and the elimination of autistic women folding laundry, and the elimination of autistic seniors golfing, and the elimination of autistic babies sucking pacifiers, and the elimination of autistic writers watching trashy television. Autism Speaks wants to eliminate us and everything about us: the good, the bad, and the utterly boring.

Autism is not a stereotype, or an image, or a set of pathologized 'symptoms.' It's not a moment in isolation, or a metaphor for modern alienation, or a term to embody all of a parent's worst fears about their child. It's not an illness or a virus or a demon that steals souls. It's simply a description of a type of people...living, breathing, conscious, autonomous, concrete, complex, multidimensional, non-hypothetical autistic people. This is autism."
2. So who are these non-hypothetical autistic people?  They're incredibly diverse in personality, age, and abilities. Thus, so is autism.

Alyssa, author of Yes That Too, counted 3129 ways one could be diagnosed as on the autism spectrum according to the DSM-IV-TR (the previous edition of the DSM).  On top of this variety comes diverse atypical traits not listed in the DSM (such as sensory processing differences), as well as gender and personality differences, all of which affect how autism manifests.

Nick Walker writes:

"Riki comes to town. She knows the species, traits, and potential uses of every plant in the neighborhood. She smells of patchouli and walks with a cane, and my daughter loves her.

Riki spends hours fixing my out-of-commission electric scooter, taking it apart and putting it back together. It seems to me that she's doing me a great favor working on my scooter, but from Riki's perspective, I'm doing her a favor because she's never had the opportunity to take this sort of scooter apart before. The whole time she works on the scooter, she talks to it like she's a friendly veterinarian talking to an animal. She refuses to take a break to eat...this is autism...

The youngest and most enthusiastic student in my aikido dojo, the girl is five years old and so small that even the smallest size of gi is adorably large on her.

She loves aikido. Like me, when I started my own aikido training at the age of twelve, she has a hard time learning the moves, but she keeps on working at it because she gets what the art is about, she appreciates its sublime beauty in a way that most people, so far as I can tell, don't arrive at until they've been training for ten or twenty or thirty years.

This little girl can see the beauty, too. And today, before class starts, she can barely wait to talk to me. But she still remembers to stop and bow when she enters the dojo. The Autistic kids always remember.

After her bow, she comes bounding across the mat to me.

"Hello, Sensei," she says.

"Good morning," I say.

"Today is a special class!" she informs me, looking somewhere past my left shoulder. "This is my fifty-third aikido class!"

"Ah," I say. I think for just a moment, then it comes to me. "That's a prime, isn't it?"

"Yes!" she laughs, and bounds away across the blue mat, hands flapping.  This is autism...

I've been reading Kassiane's activist writings online for more than a dozen years. Her writing is fiery and powerful, the writing of someone who has learned well and truly that the consequences of standing up and pushing back hard against the forces of oppression are never as bad as the consequences of not pushing back. I know a lot of people who are scared of her. I regard her as a hero.

In person, Kassiane is smaller than I expected, and she has a white cat named Purkinje who sits on her shouulder. She looks ten years younger than her age, and her voice is soft and light, easy on the ears. She loves the color purple. I've seen photos of her with purple hair, but today it's brown. She might or might not be wearing purple. I can't tell. It doesn't matter. Because everything she does is a beautiful bright purple. My brain processes her voice as purple, her movements as purple. She's warm and friendly, and when she hugs me, she means it, and I feel like I've been enveloped by a purple glow. This is autism..."

Nightengale of Samarkand writes:

"I wake up in the morning and check my livejournal, a  certain set of blogs that are updated daily, the CNN headlines and the MSN online crossword puzzle. Sometimes the order varies, and sometimes I don't have time, but by and large, this is my routine and I stick with my routine. I like routines. This is autism.

I get my things together for work. I have to keep my keys and ID lanyard in the same place, because I can never find anything. Sometimes I can't find my glasses because I put them down somewhere. I look with my fingers because I may not reliably see them, even though I see fine (even without my glasses). I have to double and triple check that I have my purse, my lunch, my cell phone. I am disorganized in time and space. This is autism too...

I don't recognize her in the hallway. Well, she's wearing scrubs and an ID badge, so I know she works here and I presumably know her. But I don't recognize her face and her badge is turned around so I can't see her name. She's talking to me about a meeting. I look away while listening and start running through names, trying to place her. I wonder if I can get her to email me. E-mails are nice because they have the sender's name on them. She puts her hand on my arm and I try not to flinch or pull away. Eventually she says something which clicks. Prosopagnosia is autism, too...

There's a phone message waiting for me when I get in, to call a parent back. One of my patients is banging her head again, hard, because yes, this is autism, sometimes as well...we talk about looking for physical causes, headache, stomachache, ear infection, permanent teeth coming in. We talk about continued efforts to establish communication, to provide increased visual supports, to offer choices. We talk about medications. Her father is worried...

I see a patient who is having trouble focusing at school. We're trying medication. He's able to tell me how it makes him feel when it works, how the side effects made him feel when the dose was too high. He needs help with organization and school is expecting him to manage his assignments and materials without support. He is being bullied at school, and he can tell me how that feels, too. I tell him I know all about it, and it stinks.  He says he wants to be a teacher some day. His mother is proud of her son, frustrated with school. I give them some bullying resources and the number for a parent special education advocacy group and the link to "Autistifying My Habitat."...

I hear my next patient protesting the blood pressure cuff. The nurses offer bubbles and I hear giggles. I take the magazines and crayons out of the room so they don't get eaten and bring in some trucks and blocks. He loves trucks. He runs them off the end of the table to watch them fall. Then he lines up the blocks. He flaps happily. A casual observer in the waiting room would recognize this as autism. He is getting speech therapy now, and just started preschool. They are using a visual schedule and he has transitioned pretty well. He can tell me his name and age and he turns his head helpfully when I look in his ears. He's pretty facile on the iPAD, too. At his last visit, he screamed the entire time and hid under the table. His mother is tired but pleased...

He's had an autism diagnosis for about a year, but his family hasn't told him yet. They aren't sure how to go about it. They aren't sure they want to label him. I gently break the news to them that they are going to need to break the news to him, and that if they don't supply an accurate label, he is going to be supplied with plenty of harmful ones. School tends to favor "non-compliant" while classmates go for "weird." He's been doodling bridges the whole time we've been talking, says he wants to be an engineer someday when I ask. I can see engineering school going well, but first he has to survive 8th grade. I compile resources including a book of autism heroes and a book on middle school by an autistic teenager. I also point out that he should be offered the opportunity to be part of autistic community and to find other people like him.  I try to explain that there is autistic community...

My last patient of the day is not yet diagnosed. Her family is looking for guidance to help her navigate the increasingly challenging world. She has lots of language and I chat with her along with her parents. She's quite social. I listen some more, hear some slightly unusual inflection and word use for her age, some subtle scripting...she's social, her parents say, and likes to join groups of kids, but she doesn't know what to do once she's joined them, wants to play the same way over and over. No one would ever look at her in the waiting room and think, autism, but I do. The more I chat with her, play with her, learn about her, the more she pings my ASDar. That's an undercelebrated aspect of autism, the ASDar, but a useful one. As she waves happily goodbye to me, I smile back and think, 'I bet you're autism, too!'"
3. Just as autism can't be reduced to one sort of person, so autism can't be reduced to one specific experience.  Autism pervades a person's life, an autistic person's life can't be reduced to misery any more than any other person's can.
 Sami writes:
"I can't really think of a single, specific attribute or story that simply is autism...I can...just offer one perspective on what it's like to be on the spectrum. In essence, my story is my story alone. And I'll be darned if I sit back and let a group that wishes I didn't exist tell it for me."

4. A parent's life also can't be reduced to misery, any more than any other parent's can.  Autism creates harder and different struggles--but no one's life can be reduced to their struggles.

Linda Mastroianni writes

"Yes, autism is exhausting, worrying, heart-wrenching, but it is also about triumphs and milestones and making huge accomplishments when others (like Autism Speaks) have handed down a life sentence of despair, pain, financial and marital ruin...

By no means do I want to diminish the struggles that many families deal with on a daily basis with their autistic child. I know what it's like having a nonverbal child with behavioral issues. I know what it feels like having a child that is constantly screaming all day. I know what it's like to have a child that wants to take off his clothes all day and just stay in the bathtub. I know what it's like having daycare call advising you that they can no longer care for your child because he is just "too much to handle".

But I also know what it feels like to see this child develop; to have been blessed with therapists that have helped him to ease down on the screaming until it was a thing of the past. I also know what it feels like to see this child go to school and play with friends. Yes, he is in a special school for special needs kids but that doesn't make the quality of his life any less than ours...I take great offence that they label my son as a burden."

Zita writes:
We avoid foods that upset him...
We worry about whether he will eat lunch...
We bulk buy the half dozen foods that he enjoys, only to wonder why he won't eat them...
We avoid restaurants, knowing there will be nothing there he will tolerate...
We rejoice in every new food he tries and reward him with praise and love...
We haven't had a full night's sleep since he was born.
We celebrate every time he sleeps through the night...

We dim the lights.
We monitor noise levels.
We plan every outing, carefully scanning the environment for triggers.
We cut off tags and cautiously select fabrics.
We wonder where his shoes and socks have gone.
We built a dark, sensory room.
We built a fun, gross motor room.
We bought a trampoline, a swing set, a slide, an indoor hammock...
We wonder when our house became a jungle gym.
We follow a sensory diet, and regret when we get off track.
We hold him when he breaks down because it's all become too much.
We agonize over his meltdowns, and are filled with guilt and regret.
We have gotten injured.
We have watched him injure himself.
We accommodate the needs of his body.

We laugh when we watch him spin in the kitchen.
We feel exposed when he does it in the mall.
We tell people that he speaks with his body.
We reinforce that behavior is communication.
 We offer alternatives to busy his hands.
We know that we are judged.
We want him to express his joy.
We wish he could do it with words.
We seek out people who "get us."
We surround ourselves with people who get him...

We relish every look, every smile, every laugh.
We constantly try to keep him engaged.
We are overcome with guilt when we can't.
We are thrilled that he has friends who love him...
We worry that, soon, they woon't understand.
We are scared that they will abandon him.
We are terrified that he will be lonely.
We wonder what he is thinking.
We wonder what he is feeling.
We wonder what he would say, if only he could say it.
We manage our expectations.
We understand that the future is uncertain, for him and for us.

We research GPS location devices.
We have the police department programmed into our phones...
We want him to feel safe.
We wish he understood fear.
We know that water is his favorite friend.
We know that water is our enemy.
We know that he loves to explore.
We lock all the doors...

We feel his love in every hug and every kiss...
We believe that every word is a gift...
We seek out answers to mitigate his negative symptoms.
We encourage him to explore and expand on his strengths.
We see doctors, therapists, specialists, teachers.
We are overwhelmed with information.
We juggle the needs of both of our children.
We wonder if we are failing him.
We wonder if we are failing her.
We lovev our son for who he is.
We do not try to change him.
We try to understand him.
We try to help him.
We wonder if we are.
We cherish every day...

 5. Sometimes, indeed, autism involves unique joys.
The Caffeinated Autistic writes:  "Autism is the joy of flapping your hands when something makes your heart sing...Autism is reveling in the good textures--running your hand over every bump, curve, and rivet."

Kassiane, author of Neurodivergent K, writes:

"Autism is focus. This leap is called a double stag. My focus was right on the sole of my foot, visually speaking. Internally speaking it was only on what I was doing. There was no thought as traditionally described. There was me, music, the mat, and movement. That's it. I can do that. I cannot meditate in the usual sense, but I can become one with movement. Everything else goes away.

So it is when I am focusing on something that I love. ...Autism is deep love. People write it off as special interest or obsession, but even if it's not something I can excel at, I can excel at loving what I love, loving what I do, loving who I love. Autism is being able to be consumed by love and interest, it is giving 100% because it is an insult to the thing one loves to give any less. ... Autism is finding myself and losing everything else while jumping, flipping, spinning. And this is the best thing ever."

You may recognize her description of intense focus as "flow," an unself-conscious bliss experienced by people of all walks of life around the world.

6. For some, autism is the place where impressive talents meet frustrating disabilities. 
The Caffeinated Autistic writes
"Autism is holding a bachelor's degree but working in a drive thru...Autism is being able to recite pages and pages of text that you learned when you were sixteen but unable to remember something you read an hour ago."

Lydia, author of Autistic Hoya, writes:
"I can remember 10-digit phone numbers, months after dialing them exactly twice.  Just don't ask me to write a check, because no matter how many times I'm taught, I can't remember how...

I graduated from high school a year early at the top of my class, finished college in 7 semesters, and now maintain a 4.00 average in grad school.

I am also affected enough that I qualified for and received Adult Autism Waiver services through the state for two years. I stopped them not because  I no longer needed them but because my health issues made me unable to participate...

I'm hyperverbal, if by 'verbal' you mean able to lecture on preferred topics and express myself in writing. If, however, you define 'verbal' as having the ability to tell the doctor what hurts or being able to say, 'Hey, that hurts my ears,  could you please stop?' instead of growling and yelling, well, no, I can't do that...

This place, where incredible gifts meet surprising deficits, this is autism."

7. For some, autism is validation, belonging, community.

Likethedreamersdo wrote:  "Autism is the lens through which I am finally beginning to see myself clearly...autism is knowing that all the ways I have felt different throughout my life were for a reason. Autism is validation."

8. Autism includes not only the effects of the disability itself (positive or negative), but also the way people are treated because of it. Often, therefore, autism is fear.

As autisticook writes:

"Fear of not being seen as fully human when I lose my words. Fear of losing my words because I have so much to say. Fear of not being listened to.

Afraid of getting my experiences discounted, of being told that I can't understand something because I'm autistic. Afraid of being told I have no empathy.

Fear of losing my job. Losing it again and again. Fear of losing my house. Fear of seeing my safety destroyed.

Afraid of big crowds. Bright lights. Afraid of loud noises. Afraid of tiny noises that are impossible to identify. Afraid of clothes that seem fine one moment and unbearably itchy the next.

Fear. Of you looking at me and seeing a loser. Fear of you telling me that I should stop feeling sorry for myself. That I should try harder. When I've been trying so hard all my damn life. Fear of becoming too tired to continue.

Afraid of getting judged for not being able to keep my house clean. Myself clean. Myself fed. Afraid of getting judged for not doing the things that normal people do.

Fear of being told I have no feelings.

Afraid that nobody will understand and I will end up alone. Forgotten. Discounted. Ignored.

Fear that people will only see my defects. Not my strengths."

Bridget Allen traces this fear back to the ideology spread by Autism Speaks:

"My fear is of people, fueled by the rhetoric of the Wrights and others of their ilk, who want me dead.

Ms. Wright, This is Autism, the Autism you helped create.

This is Autism: Autism is having to work too hard...being natural or relaxed in public is impossible...

This is Autism: Autism is having needs treated as preferences...

This is Autism: Autism is having to explain myself over and over when explaining is the hardest thing to do. When I use verbal speech to communicate, understand that I am meeting you considerably more than halfway. I am expending energy that takes away from my responsibilities and loved ones...

This is Autism: Autism is knowing no matter what, the majority of people I encounter will always view me as a little less than fully human."