The Art and Science of Autism (#243)

Charlie has been talking a lot and very clearly and spontaneously these past few days, and also connecting a lot socially and emotionally with other people. He said tons of mands during his verbal behavior session this afternoon. Towards the end, he walked over to Miss Cindy, sat on her lap, and gave her a big hug.
"My Charlie Chip Kid!" she told me, and we all laughed.

How sweet progress is. But the buzz of worry simultaneously creeps into my stomach: How can we keep this up for Charlie? How can I keep walking so relaxed behind Charlie skipping hand in hand with Jim on the way to get his favorite "b’own noodles dinn-err"? How can we keep not merely seeming but being the happy family playing catch in the front yard, as seen by some young couple and their realtor who were looking at the house for sale two doors down this morning?

In contrast to a year ago when Charlie had to start taking Risperdal for SIB’s and aggression (which led to him inadvertently kicking out the glass of the front window), our days have been full of simple magic. And how I want to be the magus privy to the secret spell, the special token, that will make these days the norm and last year’s rough road history. Last year taught me that you can never be too prepared with strategy in these autism wars, these days of sweetbitter radiance.

Science is a word that brings out the fighting–the impassioned dissent and debate in the autism world. The topic might be mercury and vaccines, or the science of Applied Behavior Analysis, or biomedical treatments. The title of University of California at San Diego professor Laura Schreibman’s 2005 book The Science and Fiction of Autism roughly captures how each side of these debates feels about the other: Chelation is a fraudulent and dangerous treatment for children with autism ; chelation is an experimental biomedical treatment that has helped some.

The "fictional science" that Schreibman critiques at length includes such long-discredited theories as the treatments espoused by the likes of Bruno Bettelheim in the 1960s: "She also largely ignores the interdisciplinary quality of much new autism research, which reflects how deeply this condition is grounded in relationships: between different sections of the human brain; between genetics and the environment; between autistic ritual and narrative meaning," as Jim wrote recently in a review in Commonweal magazine.

As autism parents at the beginning of the 21st century, Jim and I spend a considerable amount of time and energy studying and debating the science and fiction of autism treatments and research. Again and again we find that, while the debates within the community of autistic persons, autism parents, and autism professionals can become quite heated, at least we have a common understanding of what the word "autism" represents.

In Jim’s Commonweal magazine book review, the accompanying illustration gave us both pause.

The illustration is a black-and-white line drawing, the bottom half of which is of a nearly hairless, rather large-headed boy (???????), slant or closed eyes facing downward and mouth shut. The boy has a very large forehead at the apex of which is a human figure, head hunched and folded arms clasped over drawn-up knees. A sort of short palm tree is behind this figure (its trunk rising dead-center out of the boy’s head, or brain). And at a diver’s diagonal to the left of the tree is a winged figure in a skirt and high heels, an angel with a beaked mouth, right hand on the hunched figure.

According to this picture, the face of autism is that of a stone-featured, depressed, catatonic individual, who some angel is reaching down towards—with the suggestion that the angel’s touch will take the autistic person out of his sad "shell." That is my interpretation of the picture and, whatever the artist’s intentions, the image of autism in this picture is out-moded and simply wrong.

A few years ago, Jim published an essay entitled Charlie’s World: A Family Battles Autism in Commonweal. The illustration with the article was a photograph of a smiling 2 1/2 year old Charlie in front of the library of the university where I was then teaching. The illustration on the magazine’s front cover–a black and white drawing against a wash of blue, red, yellow, black in MRI-like waves–was of a hunched over figure that recalled Quasimodo.

A case of art not imitating our lovely life with Charlie, our son who has autism.
If there is an art to autism–to living in and with autism–it is (for me) about understanding when to cultivate, to nurture, Charlie’s sometimes thrillingly, sometimes sadly, sometimes terribly beautiful, difference. It is to wonder, as we strive to teach Charlie something other than to engage in certain self-stimulatory behaviors, how are we traipsing over his unique self-expression because we (his parents) have decided that teaching him to catch balls, read, ride a bike, build and not only line up blocks, eat with a fork instead of his fingers, will lead to a better future for him.

It is to realize that we, two humanists with a penchant for following our feelings, have concluded that ABA (which some have compared to "dog training") is the preferred way to teach Charlie and, by not tolerating his stimming, to give him freedom. The cultivation or rearing of plants and crops in the field has long been a metaphor for educating (from the Latin educere, "to bring up, rear") the young. The ancient Roman poet Virgil in his Georgics writes of the farmer sinking his iron plow into the field’s untouched dirt and how Jupiter "the father willed this road / our cultured life / to be hard" (pater ipse colendi / haud facilem esse uiam uoluit, Book I.121-122).

Jupiter uses "art" (per artem) to plow the fields for cultivation. It is through a certain art that we have learned to teach Charlie and have watched so many others teach him to sit at a table, to talk, to say "I lwuv y’oooo." And whether this art arises from studying ABA or foreign language pedagogy or the finer points of lecturing to packed halls of undergrads, the evidence of our eyes and ears and of our gut tells us, Charlie is learning. Charlie has that peaceful, easy feeling. Charlie is in a good way.

And what other evidence or data could better paint the truth about Charlie?

2 Responses to “The Art and Science of Autism (#243)”
  1. Eileen says:

    It seems to me that you and Jim have found the right way to keep that peaceful easy feeling boy. You have found the art and science that works for your boy with autism. Just keep doing what you are doing and there is no telling what Charlie will accomplish. We will all keep learning from your example.

    It looks to me that the distance is increasing between Jim and Charlie in the ball catching pictures too. Good job Charle!

  2. gretchen says:

    The “buzz of worry” crept into my stomach too, when Henry’s teacher suggested he start inclusion with the “regular” kindergarteners.

    When I’m feeling sorry for myself, I think that this is what autism has stolen from us as parents: the ability to enjoy the good without worrying that the bad is around the corner. It’s what makes me feel older than I am sometimes.

    Sorry to be a downer. I am truly uplifted by all Charlie’s accomplishments lately. This particular phrase of yours just jumped out and grabbed me today.

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