Autism Truth & Autism Fiction (#292)

When Charlie was just diagnosed with autism in July 1999, Jim and I read and read and read. We read books of the "what is autism?" sort (The World of the Autistic Child : Understanding and Treating Autistic Spectrum Disorders ), books of the "now that you know your child has autism, this is what you do" sort (Children with Autism: A Parent's Guide) to parent memoirs (Catherine Maurice's Let Me Hear Your Voice and my favorite in the "autism parent genre," Clara Claiborne Park's The Siege).

We read about biomedical treatments and we collected a weighty shelf of teaching manuals.

We read Temple Grandin; we read autiebiography, starting with Beyond Silence by Tito Rajarshi Mukhopadhay; Ballastexistenz has a list of many autistic authors.

Recently I've been reading two novels written from the first-person perspective of a mother with an autistic child, Ann Bauer's A Wild Ride Up the Cupboards and Marti Leimbach's Daniel Isn't Talking. My progress through these novels has been slow. I keep getting stuck on a page when a scene or sentence jogs something in my memory. Perhaps this is because both novels are about children younger than Charlie; perhaps it is because, a significant part of their narrative is about figuring out that a child has autism: Now Jim and I feel the Charlie could have been diagnosed around his first birthday.

Melanie, the narrator of Leimbach's novel, observes:

"Daniel has one toy he likes and hundreds he ignores. The one toy he likes is a wooden Brio model of Thomas the Tank Engine.....The train must go with him everywhere and must either be in his hand or in his mouth. .......... No amount of reassurance from me, no promise that this will take only one minute, less than a minute, does anything to soothe Daniel, who pounds at my thighs with his small hands, screams like a monkey, opening his mouth so wide I can see down his throat."

It was just today, a few blocks from our house at the end of an eagerly-anticipated bike ride, that Jim heard that scream come from Charlie.

It's a cry Jim and I heard plenty of in the months before Charlie's actual autism diagnosis (July 22, 1999--7-22-99). It was around midnight in May of 1999 when Jim called me to the TV, to see a segment of the neurologist Oliver Sack's The Mind Traveler on autism. We saw a child in a swing; we saw the swing stop and we heard that scream--squawk--that autism cry.

"It sounds like Charlie," we both thought.

That cry from Charlie does tend to accompany a behavior squall and, in particular, a behavior squall arising because of transition trouble. The cry usually accompanies another behavior--like back-arching, back-flopping, head-action.

Today, Charlie's cry while on his bike did function as a bit of a warning. He had practically leapt onto his bike after running up and down our front yard and bringing Jim his bike helmet. But Charlie was frowning when he and Jim came back after their usual hour, and briefly back-flopped onto the grass. We pulled him up and he sat crying on the couch, but not minding when I sat behind him and offered my arm to lean into.

"He kept shaking his head from side to side," Jim noted later. "We weren't in sync, in the flow."

"Maybe his head was hot," I said (it was nearly 80 degrees today).

Charlie had woken up at 6am; I had set my alarm and ran into his room soon as I heard a noise. I gave him his medicine and he climbed into our bed and proceeded to push his head and shoulders and the soles of his feet against us: Does he have some need for deep physical pressure on waking, on coming back to consciousness? Our ABA consultant had made a special trip on Friday to drop off a freshly-laminated sheet of photos for Charlie's schedule (my laminator had eaten a bunch of schedule cards) and I kept switching the cards on Charlie's schedule-strip and going over what we would be doing. Charlie usually starts to ask to get into the black car to go out to his Saturday verbal behavior session a few hours before we actually have to go but we were able to explain to him that first there'd be the bike ride, the playing, the lunch, the catch with dad, the picking up in the yard, the trip to the recycle place. And all went smoothly.

Charlie smiled for most of the ride to his verbal behavior session. I had all the windows down and the roar of many cars was increased by the revving up of passing motorcycles. Ten minutes from the verbal behavior center, two motorcycles wove around us; Charlie stared, frowning, at them as we stopped for a red light. I tried to explain: "They're like bikes. With motors."

A minute later, he back-arched in his car seat and then he went--lightly, but I was driving--for the window.

I asked Charlie to hold my right hand; I put on the blinker and we pulled over onto the shoulder of the road. I tried to ask: "What's bothering you?"

"Boherrringooo," said Charlie. We got on the road again and there went his head again. I pulled over again, told Charlie to get out, and moved his car seat to the middle of the car. I sat for a moment, called Jim, drove on after one more glance towards the backseat at a crying Charlie: "Bye bye! Bye bye no bye bye, sushi! Sushi!"

I didn't say anything. From past experience, saying "sushi" would set off another round of head-action and, well, we were in a moving vehicle.

This is a tough moment I could not make up.

That is why I could not write fiction--novels--about autism. Charlie knocking his head on the window of the black car is no fiction, it is the truth; Charlie having a super session, talking up a storm and playing with all kinds of toys, Charlie grinning to visit his grandparents' house and big backyard, Charlie gobbling up his tortilla-less burrito and taking a really long "hot showah" and watching the Goodnight Moon DVD with my mom and Charlie falling asleep almost as soon as I tucked him in:

This is the truth about autism, a narrative in which some tough things can happen that might seem simply to justify the DSM-IV definition of autism. But I write without any thought of the DSM-IV; of anything but getting the truth out about Charlie.

For this is the true story of Charlie, in which the meaning of dirt and gold are under question, revision, and transformation. And that would be something to write--to tell--the truth about.

Autism Asperger's Children Science Health Parenting Education Mercury Poetry

Comments

[Lisa]

Life is about contrast and juxtaposition, isn't it? The most powerful poetry employs strong juxtaposition--how else do we make the world come alive? Our eye is drawn to the red holly berry against the white snow or the purple iris on the green grass. We remember best those events that have heightened emotional meaning--the intensely joyful and the intensely painful. The trick, as you so eloquently describe, is not to fully define life in terms of either extreme, but embrace the contradiction and contrast fully.

Be well.
Best,
Lisa

[Kristina Chew]

Lisa, thank you--yes---Sappho expresses it the best, perhaps when she describes Love as

glukupikron amachanon orpeton

(sweetbitter, impossible to fight off, creature stealing up). [LP, fr. 130)

[Julie]

I wrote a few things countering some things that you said on your other site, AutismVox, and I just wanted to say that I enjoyed this post and many of your other ones. I have a tendency to only speak up in dissent sometimes, but I like your thoughts and I think you say a lot of important things. Plus you have a PhD so you probably know more than I do anyways.

[Kristina Chew]

Julie, thank you. Your comments on Autism Vox got me thinking in some good ways and I'm really glad to hear from you. I have plenty to learn!

[Julie]

Heh, thanks. Well I suppose all I can really offer to you is that I have Asperger's, so I can give an "over here" view of things, but other than that I think I'm learning a lot more from you and other mom-blogs right now than you and they are from me. I'm only recently diagnosed, anyways :)