Never Alone (#106)

Charlie and I spent the afternoon and evening as we have very often done over these past eight years, together, just the two of us. (Charlie always perks up and says “Daddy home!” soon as we pull into the driveway around 3pm, and then suppresses a sigh when I remind him “Dad’s working late tonight,” as Jim teaches in the evening on Tuesday after a long day in his office.) After a pleasant Monday, Tuesday turned out to be tough: Charlie was (I think) at a school assembly and ended up twice in the nurse’s office, first because of his head, and second (two hours later) because of his stomach. I ended my Latin class hastily to go pick him up. When Charlie said “burger fries McDonalds” I shook my head: “Maybe tomorrow, you had stomach trouble today!” (Charlie was crestfallen.) “But…. what about we go to Target and get a soda?” “Green drink!” called out Charlie, who got his shoes and was out the door.
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Of course, plenty of places have sodas but–since it was gray and rainy–Target always offers a big space to roam around in, varicolored stuff to look at, plus we were in need of some pharmeceutical items. Charlie poked around the aisles with the crocheted shawls and tolerated me checking out the cheap shoes and responded, more quickly than usual, to my request to finish in the DVD aisle. He carried his Sprite over his shoulder en route to the check-out lane and I opened it in the parking lot, lest it fizz and foam to spectacularly sticky effect in the black car.

He wanted “white rice peas” and simple food certainly seemed in order. Afterwards, Charlie asked to hear song after song on his iPod mini: “Eesy weesy spy-der! Oh Susahnah. Oh dear. John Jinn-go. Diss-ney! Hello ee-yes! Ginngerbred boy, Mom-my, wahn hear Gingerbread Boy! Let’s Get Toge-ther. Diss-ney! Farmer inna Dell. Spy-der! Mommy! I want!” He dragged a bunch of pillows and blankets onto the rug and lay down, photos of Beth and Shiri and himself and cousin Katie nearby. I sat with him, went down to eat dinner and clean up the kitchen and email students, went back up to check on Charlie. “Mommy fwie down,” said Charlie. “You want Mom to lie down? Stay here?” “Yesss,” said Charlie definitively. He came downstairs asking for a “rice cake” around 9pm, but lay down, feet in my lap, on the blue-and-white-striped couch, where he drifted into sleep. I carried him up the stairs and to bed.

Charlie likes people. Charlie prefers not to be alone, in contradiction to the “myth of the person alone” associated with autism since its initial identification by Leo Kanner in the 1940s. Douglas Biklen, a professor at Syracuse University, refutes this myth in his recently published book, Autism and the Myth of the Person Alone (New York: New York University Press 2005). The classical Greek word autos can have the meaning of “alone” (as well as “he, she, it” and “same”). Biklen’s book is a qualitative study that draws on autobiographical narratives by autistic persons to understand how people who have been “classified with autism interpret themselves and the world” (3). Biklen describes autism as a “social construct” in that we can only begin to understand “autism” if we move beyond thinking of it as a “developmental disability” and even as a medical, neurological, condition. According to Biklen,

“Autism is best understood as a social and cultural construction, … the particular aspects of autism’s construction are complex and multilayered, and… people classified as autistic as well as those around them, including the autism field, have choices to make concerning which constructions to privilege. Autism is not a given condition or set of realiaties–at least, it is not ‘given’ or ‘real on its own. Rather, autism is and will be, in part, what any of us make of it.” (65)

We parents and professionals, we non-autistic persons, must constantly work through our own preconceived notions of what autism “is” as we seek to interact, understand, and be with our children.

I realize that my fellow autism parents may feel a bit flummoxed to read that the disorder/condition/disability/diagnosis/classification their child “has” (or some professional has given their child) is a “social” and a “cultural” construct. Many of us parents have come more and more to think of autism as a neurobiological and a biomedical disorder that must be “treated” through biomedical regimens as well as through intensive, highly-structured education. (And AIT, OT, speech therapy, and on and on.) The power of Biklen’s interpretation lies in the autobiographical accounts by adults with autism that make up much of the book. Biklen has conducted extensive interviews with Tito Rajarshi Mukhopadhay and Lucy Blackman, both of whom have published books, and with Sue Rubin (the subject of the short film Autism is a World) and with the painter Larry Bissonnette. The book also includes an interview (translated from Italian) with one Alberto Frugone and a long account by Robert Atfield who (like Rubin) is a university student.

It is important to note that many of these writers are minimally verbal and were classified as mentally retarded in their childhood. It was only when they learned how to type (as adolescents) that their parents and teachers learned of how fully they were taking in the world around them, and how richly they could express their thoughts. The very presence of writings by the minimally verbal Rubin (“A Conversation with Leo Kanner”) and Frugone (“Salient Moments in the Life of Alberto, as a Child, a Youth, a Young Man”) is a startling testament to the inner intellectual life of autistic persons that we too often fail even to acknowledge. As Biklen notes, we tend to equate the inability to talk with intellectual disability, with mental retardation. Rather, as Biklen writes, “[f]ar from confirming the deficit model, where the person labeled autistic is presumed isolated and uninterested, recent autobiographical accounts reveal people in search of a connection with the world” (49). We presume that a “failure” in an autistic child to respond immediately to our questions or simply to our verbal requests is a sign of incomprehension when actually the child may be processing, albeit very slowly, the words. When we rather, as Biklen urges, presume compentence in autistic persons, we “outsiders” can begin to “regard the person labeled autistic as a thinking, feeling person” (72-73).

Biklen addresses this point specifically to “educators” (72) but his “optimistic” approach to expectations for autistic persons is for all of us to learn and act upon. We must all “presume there must be a rationale [my emphasis] and then to try and discovere it, always from the other person’s perspective, listening carefully” (282). We need to embrace a “disability consciousness” in which we always engage in a call for social justice for autistic persons; in which we keep in mind how kids like Charlie are viewed by others and the extent to which society marginalizes them and thus limits their chances to achieve their full potential. While Biklen refrains from extensive analysis of Rubin et al.’s narratives–and thereby refrains from the chance to uncover, perhaps, particular ways of thinking and using language of personas with autism–his book is truly valuable in its straightforward presentation of the voices of autistic persons speaking not only for but as themselves. All of Biklen’s interviewees were motivated to learn to type because they had to communicate and connect with others.
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There are plenty of times when Charlie tells us “Mommy stairs” or “moovf Daddy” because he knows, if we’re around, we might ask him to listen to a song he does not like, or clean up his photos. But in general Charlie likes and (I will hazard) prefers the company of others. Certainly, this summer at the beach, he was extra-excited when Grandma and Grandpa, Great Aunt Joan and Great Uncle John, Great Aunt Claire and her friend, Great Uncle Bobby and Great Aunt Ellen visited, and also our friend Hal. He talks a lot about the people in his life: Gong Gong Po Po, his home therapists, his teacher, his friend Blake who is a week younger than Charlie and lives in (as Charlie tells me) “Minneso-dah.” Charlie has kept an old photo of Blake in a special place, above his placement on the kitchen table, for the past few days. And this might be because he has been thinking of “airpanes” and he knows that is how Blake came to visit Charlie in August.

And it might because Charlie has known Blake since both boys were three years old, and it means something to Charlie to talk about his old friend.

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