Autism Vox

The First Cause: Charlie, the Unmoved Mover

by Kristina Chew, PhD on February 17th, 2007

The one reason that I am writing this, right here, right now, is because of Charlie. Before Charlie—before his diagnosis of autism, before we started to wonder what is going on, before I felt what I thought might be his tiny fist or foot moving inside me—before all that, I did not know what autism was. I had barely heard of the word and, if I did hear of “autism,” it was lumped together in my head with mental retardation and (I wince at the memory) the ancient Greek word that is the etymological root of “autism,” autos (which means (1) self, (2) same, (3) he, she, it—-see What is autism?).

My son Charlie has autism—-is autistic—is on the autism spectrum—and this simple fact has come to shape every aspect of my every day, and without one single regret in me. When, a month ago, someone told me “All you talk about is autism,” I was speechless. In part, because the statement was undeniably true: Charlie is the center of my life and, because Charlie is autistic, autism just is a big part of my life, my conversation, my thoughts. The individual who made that statement is more than an acquaintance and, as such, I had wished to speak to her about the things that are most important to me, that have meant the most to me; the things that have caused me to look hard at myself, and to see where I had to change my perspective and just plain change, to do my best for Charlie.

If this person’s intent was to indicate that there is something wrong about thinking one thing (say, autism) all the time—-something a little perseverative: I can concede this. Obviously I write only about autism here on Autism Vox (it is Autism Vox, not “Something Else Vox”) and also on Autismland, my daily online journal about Charlie. Some might think all this autism-writing an excessive amount of words spilled on one narrow topic; I (as may be obvious) beg to differ. There is a lot more about autism, and autistic persons, than any DSM-IV criteria, than any single cause theory, than the definitions and descriptions handed to us, can encompass. Psychology, science, neuroscience, genetics, have been the fields most often turned to for answers and for understanding about what autism is. And education, speech therapy, occupational therapy, medicine (and alternative medicine, especially in the past decade), behavior science, have been the fields that parents have alike turned to as they search for treatments and therapies for their children.

So when Charlie was diagnosed with autism back in 1999, I felt myself to be at a distinct disadvantage, as far as my professional background and training. I am a literary critic and a classicist: I studied literature and classics—the language and culture of the ancient Greeks and Romans—in graduate school. My particular professional skills are in the rhetorical analysis and interpretation of texts (and especially of classical literature, and especially poetry) and in teaching the ancient Greek and Latin languages.

I rather suspect that one could not be more poorly prepared to be the mother of an autistic son with minimal verbal ability, a host of sensory processing issues, numerous cognitive delays, and—somewhat as the result of all these—severe behavior problems.

I love to unpack the grammatical intricacies of a long and winding sentence of Herodotus, the first Greek historian, or of Cicero, the great Roman orator. Charlie says /w/ for /l/ (”later” comes out as “waitor”) and has yet to learn the concept of verb tenses, or of pronouns.

I read a poem—anything written, really—and metaphor, image, tone, irony, assonance, alliteration, double-entendre, and more all stand out to me. Charlie (now 3 months shy of his 10th birthday) just read his first word from a book, his name in big red capital letters on a book’s cover.

I learn foreign languages fairly readily. Charlie is doing his best with American English and has many other, non-verbal, non-linguistic, ways to communicate.

I have had to undergo a fairly thorough re-education to do my best by Charlie. Or perhaps it might be better to say that I have had a lot of gaps to fill, not only about official, professional definitions and understandings of autism and vast amounts of scientific research, but in what it means to be neurologically different—”diverse”—in the way that Charlie is. And seeking to understand who Charlie is—who this young person, whole and complete and so different from me, is—has not always been easy, has been harder than any exam I ever studied nights and days for; has challenged me mentally, physically, intellectually, completely. Every day with Charlie offers new challenges—how to explain to him that his loose tooth will fall out?—new experiences as Charlie grows and changes, and (if I am lucky), a little enlightenment. Charlie’s is a cause I am ever ready to take on.

But as for what caused Charlie to become my first cause—what made Charlie be autistic—this is a question I think about when I read research into genetics or news stories trumpeting the latest suspected environmental factor, but that otherwise does not occupy my thoughts too much. As it is, I am afforded ample enough opportunities to think about “what causes autism” anytime I read about autism on the Internet. One encounters numerous articles like this one from the February 15th Long Island Press about the CDC’s recently announced studies on the prevalence rate of autism in children as being 1 in 150 and, in New Jersey, 1 in 94. Is It Your Child?: New Study Says At Least On in 150 Kids is Autistic notes that

It could be said that no other disorder has grown so fast in awareness as autism. It is a commonly held view that parents of autistic children sometimes know more about the disorder than their doctors. And those parents began to spread the news, take control of their children’s educational needs and raise money for research into the possible cause factors: genetic, environmental and vaccines.

Evelyn Ain, publisher of Spectrum magazine and the mother of 7-year-old Matthew, who has autism, is quoted as saying that “‘By 2111, it is believed that the number of children diagnosed with autism spectrum disorders will be 1 in 7.’” The Long Island Press article does not provide a reference for this very low (almost hyperbolically so) prevalence rate; Deirdre Imus was named the “Person of the Year” by Ain’s magazine, and I will hazard that vaccines and/or another environmental agent might be thought the cause for that projected “1 in 7″ prevalence rate. Certainly, since the CDC’s announcement of its prevalence study and of the 1 in 94 rate in New Jersey, there has been one article after the next about the increase in the prevalence rate, and always with speculation as to why this is.

So I was puzzled to read this question in Kim Stagliano’s latest Huffington Post post: The Expanding Vocabulary of the Autism Mom: “Why hasn’t anyone asked ‘WHAT IT CAUSING ALL OF THIS AUTISM?’” Far from being the “new ‘C’ word in town”—which word Stagliano, the mother of three autistic daughters, alludes to in the opening of her post as “that nasty, vicious four letter word for a woman’s genitals” that is “so mean and desperate” and also at the end—”cause” is a word that one hears rather frequently in discussions about autism, followed by the reeling off of the usual factors, that maybe some children have a genetic predisposition, a weak immune system, but that you never can discount those environmental factors, can you? and one still ought to keep in the mind the they’re diagnosing it better argument……just in case.

The question of “what is the cause” of autism is asked and speculated upon with as much regularity as Stagliano writes that one encounters autistic children today (she cites the examples of a friend who is a special education teacher (”…rarely, if ever, did she have students with autism. Yes, there were autistic students, but not entire schools full of them”) and of the nine autistic students in her daughters’ special education CCD (catechism classes) at their church. Indeed, one could say that the autism community seems rather fixated on the question of causation which, while certainly important, is hardly the only question to ask in regard to autism. If one believes that one’s child became autistic due to (for instance) mercury poisoning from (for instance) thimerasol, the tuna you the mother ate while expecting and from your dental amalgams, a simple solution to treating this heavy metal poisoned/autistic child would seem to be apparent: Chelate the toxic substances from the child’s body.

That is, arguments for this or that single factor as causing autism tend to be attached to quite straightforward treatment protocols, usually of a biomedical nature (of course, Bruno Bettelheim had a single factor argument for the cause of autism—bad parenting and, in particular, the bad mother—and a simple remedy: remove the child from the parents). Arguments for a single factor as causing autism—for some first cause of autism—have a kind of simple, and appealing, elegance, as these pose simple, straightforward answers for what to do with one’s autistic child and, even more, for what to do to make one’s child no longer autistic. They enable a person (a parent) to hone in on someone, something, some drug company, to blame.

Such arguments, though, can be somewhat distracting. If one is focused continually on what caused a child at some young age to become autistic, one is spending a great deal of time thinking about that one thing and about the child at that one, very young, age, and children—like my own son—autistic and non-autistic, grow, and grow up, and change, and educational plans and placements must be revised and reimagined to suit their changing needs. We need, that is, not only to think of what causes autism, to how autism, and our autistic children, are our cause (as Stagliano’s daughters are so clearly, from the impassioned and forceful tone of her writing)—to the extent that we talk about autism, and our children, all the time—because seeing one’s autistic children come into her and his own after so many days, months, and years of effort is itself better than winning any Nobel Prize.

Charlie is my first cause—is, if you will, the principle that sets me into motion. He is—to refer to the ancient philosopher Aristotle in his Metaphysics—the “unmoved mover” (πρῶτον κινοῦν ἀκίνητον or primus motor) in my Autismland cosmos. Aristotle describes the “first cause” as that which sets the universe (the ancient Greek kosmos, which means a “beautiful order”) into motion and which is itself not moved by any action but is perfectly beautiful, complete in its own action, and contemplating of only its perfect self (a description which, if applied to an autistic child contentedly lining up the same plastic cups or toy cars over and over, seemingly unnoticing of others’ actions or responses, seems quite fitting). Like Aristotle’s unmoved mover—this being at the center of his cosmos—Charlie has only to move a little, to say one word or part of one word, to show that he has some interest in some any one thing (playing the piano, the ocean, riding the subway, listening to The Beatles), and you can be sure Jim and I would try to move heaven and earth, or at least buy too many CDs on Amazon.com, so that he might have these. And when Charlie shows just an inkling of passion for something—he was singing “Eleanor Rigby” con brio this evening—I think I can hear the music of the spheres, tinkling according to the soft rhythms of the voice at the center of it all; the voice of the first cause.

And so, with an unmoved mover like Charlie at home and belonging at the center of my cosmos, it ought not be so odd that “autism” gets woven into the daily music of our lives, and of my topics of conversation and writing. Indeed, I count myself fortunate—the Latin is felix, as in Happy [or fortunate; lucky] is he who can know the causes of things” (felix qui potuit rerum cognoscere causas).

Happy is she who can know what and who her cause is.

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POSTED IN: Charlisms, Classics, Diagnosis, Parenting, Philosophy, Psychology, Science, Treatment, Vaccines, Writing