The Public Face of Autism (#117)

Yes, Charlie does need to be taught using different teaching techniques than “most” children. Yes, Charlie has a speech disability, sensory deficits, visual tracking difficulties. Yes, it is Charlie’s right to receive the best possible education that will best enable him to achieve his full potential as a citizen of this country. And we do believe that our community, that the general public, can only benefit and learn from regular interaction with Charlie and with autism.
It is only through the careful application of behavioral principles, an understanding of the sensory deficits of autism, a lot of practice and a growing ability to simply ignore what any stranger might think of the humming/screaming/tantrumming/throwing-himself-to-the-ground child that Jim and I are able to take Charlie to the grocery store, Target, Blockbuster, the library, the mall; to ride trains, subways, and airplanes; to eat in restaurants besides McDonalds. (We are working on church.) We know that Charlie must learn to handle himself in these public settings as part of his having as independent a life as possible as an adult. It is always easier to stay at home, to sit in the car, to segregate ourselves and there are certainly days when I decide I’m not “up to it.” And, we do believe, that our community, that the general public, can only benefit and learn from regular interaction with Charlie and with autism.
This belief is behind my decision, made when I started this weblog back in June and only after long discussion with Jim, about including photographs of Charlie. We are both more than aware that there are untold numbers of disturbed individuals out there who harvest photos from the web and use them for illicit purposes. I decided to include photos of Charlie, and the details of his and our daily lives on this weblog, because I believe that, if we are to truly begin to change the popular misunderstanding of autism handed down to us by the likes of Bruno Bettelheim and his ilk, we need to go public about autism; we need to change the public face of autism. It is too easy to segregate Charlie and kids and adults like him in settings that are separate and not at all equal.

The covers of two books, both published in the 1960s, epitomize the notion of the autistic person as desiring to be alone and withdrawn from the world, “[coming] into the world with the innate innability to form the usual, biologically provided affective contact with people,” as Leo Kanner wrote in his 1943 essay on autism.

This is the 1964 best-seller Dibs In Search of Self: Personality Development in Play Therapy by Virginia Axline (1964). Axline describes how, through play therapy and psychotherapy, she successfully leads Dibs to “a new awareness of selfhood.” While Axline only mentions “autism” once and does not refer to her patient as specifically having autism, she describes Dibbs as an echolalic, pronoun-reversing, and withdrawn 6-year-old. It is only through the efforts of a “gifted healer” such as Axline describes herself to be that Dibs is cured and able to achieve “wholeness and authentic selfhood following an arduous journey of self-discovery.”
Dibs’ withdrawn condition is, according to Axline’s misinterpretation, the result of emotional injury and the book’s cover portrait of a solemn, side-gazing, rather blank boy with a bowl haircut can be read as a metaphor for a young lost soul, “in search of self.” The cover of Bruno Bettelheim’s 1967 The Empty Fortress: Infantile Autism and the Birth of the Self depicts a young girl, eyes downcast and one arm wrapped around a doll whose mouth is covered by the girl’s right hand, while the other hand pulls on the doll’s hair. The girl’s own mouth is barely visible due to her not holding her head up. Just as Axline is the therapist-healer of the emotionally wounded Dibs, so does Bettelheim present himself as the priestly doctor able to cure children suffering severe emotional withdrawal as the result of being in an “extreme situation,” analogous to a prisoner in a Nazi concentration camp (as Bettelheim himself had been). The extreme situation that sparks autism is a parent–a “refrigerator mother”–who does not “respond” adequately and indeed at all to her child. The child, writes Bettelheim, perceives any and everything in the environment as a peril to himself: “…the autistic child is terrified by relations because they all seem destructive to him”; locked in a desperate situation, the child turns into himself and becomes autistic.

The harm done by such psychogenic interpretations of autism is immediately acknowledged today. One cringes at their crude and cruel depictions of both children living an autistic nightmare (to be unlocked by the gifted psychotherapist) and of parents, whom Bettelheim equates with Nazi prison camp guards. Nonetheless, the popular understanding of autism is still based on stereotypes of autism as a condition resulting from bad parenting; a sign of this persistent cultural misunderstanding of autism is reflected in therapies that claim to “draw out” an autistic child who is emotionally and socially “withdrawn” from the world and in his or her “own world.”

It was not too long ago that autistic children were removed from their families and placed in schools such as Bettelheim’s Orthogenic School in Chicago, precisely because of the terribly wrong notion that their parents were precisely the cause of the children’s disorder. Clara Claiborne Park’s 1967 The Siege: The First Eight Years of an Autistic Child is a powerful document in no small part because it describes the Parks’s decision to raise their daughter, Jessy, at home, rather than institutionalizing her. “Are they going to take him away from us?” had been Jim’s sorrow-drenched response when I had told him, over the phone, that Charlie, “they” were saying, had autism. An image of our little boy–a toddler, not yet two years old, who was still new to walking–clad in a flimsy hospital gown, eyes big in bewilderment, flashed into my mind.
Today we had an appointment at a photography studio at 12 noon. We had to pose for a family portrait, to accompany a letter we have been writing to assist in raising donations for a major New Jersey autism organization. I drove off at 8am to attend the fall meeting of the NJCA. Jim and Charlie were planning to take a train to New Brunswick, where I would pick them up and we would all drive to the studio. The trains were not running according to schedule and they boarded one, only to learn that it was going to the wrong destination; Jim hastily pulled Charlie off. (He was happily settled; he exited without a fuss.) I came home to see Charlie nicely dressed in a navy blue golf shirt and khakis, all while climbing and jumping on the couch, whose cushions lay strewn amid a spilled soda, blankets, papers, and shoes. We hurried out the door and Charlie looked when the photographer said “look at me”; said “cheese,” “pickles,” and “bananas” as requested; smiled; and let out a huge yelp in the middle when he’d had enough of standing squashed between Jim and me and having his head turned this and that way.

Charlie was very happy to be home and curled up under a sleeping bag. He had another superb verbal behavior session with Cindy, who has been pushing him more and more. He gobbled up chicken chow fun and rice at his grandparents’, rode the “elevator chair,” played in their big white car. At home in our basement, we discovered a set of Boomwhackers–plastic tubes that make a musical note when struck–and, until he went to bed, drummed and sung along to the rhythm and melodies he produced. “We can get him a drum set,” said Jim, “one of those electric ones.” “Sounds good to me,” I said. “Bedtime boogie board!” said Charlie, remembering how we had visited the beach last Sunday.
It always makes me catch my breath that, had Charlie been born some few decades ago, he would have been taken from us and placed in an institution. I am sure that he would not have been able to talk. I suspect that he would have had to be in restraints and heavily medicated. I am beyond grateful to parents like the Parks for raising their daughter on their own, and for the many autism therapies such as ABA that have enabled Charlie and other autistic children to learn and lead good lives with their families, here in their homes, in their community, where they belong. There is a place for autistic persons, for Charlie, in all of our communities, in our towns and schools and stores. It is too easy for there to be no public face of autism, and Jim and I know that it is our lifelong work to be sure that Charlie and his bright-eyed face and soft voice are always visible, always heard, and always included.

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