Note: Last night I viewed the film made from the experiences of the Suskind family and the successes of their son Owen; this morning I began reading related articles, since the film left out a great deal of background detail. I found the film touching and a great contrast to the violent and obscene programming on TV, which pushes a cynical and violently aggressive picture of human behavior. The Suskinds are a family that love each other; the result is a superior outcome for their son – but we must acknowledge that as a “rich and socially well-connected” family they can afford the “high end” of care and support the system has to offer. Few families have any such option.
Reaching My Autistic Son Through Disney
Just shy of his 3rd birthday, an engaged, chatty child, full of typical speech — “I love you,” “Where are my Ninja Turtles?” “Let’s get ice cream!” — fell silent. He cried, inconsolably. Didn’t sleep. Wouldn’t make eye contact. His only word was “juice.”
I had just started a job as The Wall Street Journal’s national affairs reporter. My wife, Cornelia, a former journalist, was home with him — a new story every day, a new horror. He could barely use a sippy cup, though he’d long ago graduated to a big-boy cup. He wove about like someone walking with his eyes shut. “It doesn’t make sense,” I’d say at night. “You don’t grow backward.” Had he been injured somehow when he was out of our sight, banged his head, swallowed something poisonous? It was like searching for clues to a kidnapping.
After visits to several doctors, we first heard the word “autism.” Later, it would be fine-tuned to “regressive autism,” now affecting roughly a third of children with the disorder. Unlike the kids born with it, this group seems typical until somewhere between 18 and 36 months — then they vanish. Some never get their speech back. Families stop watching those early videos, their child waving to the camera. Too painful. That child’s gone.
In the year since his diagnosis, Owen’s only activity with his brother, Walt, is something they did before the autism struck: watching Disney movies. “The Little Mermaid,” “Beauty and the Beast,” “Aladdin” — it was a boom time for Disney — and also the old classics: “Dumbo,” “Fantasia,” “Pinocchio,” “Bambi.” They watch on a television bracketed to the wall in a high corner of our smallish bedroom in Georgetown. It is hard to know all the things going through the mind of our 6-year-old, Walt, about how his little brother, now nearly 4, is changing. They pile up pillows on our bed and sit close, Walt often with his arm around Owen’s shoulders, trying to hold him — and the shifting world — in place. (Whose shifting world? I would say that it’s the parents and brother whose world of “expectations” is shifting. We don’t know what is going on in Owen at this point.)
I want to stop right here and examine the use of the word “Autism” as the generalized label for a “brain-behavior thing” “discovered” at some point in time and then “utilized” to label PEOPLE who have an almost infinite number of “symptoms” that overlap in some generalized categories placed under the concept of “normal” human development. This idea-action is so fraught with (unintended) consequences, that one could write for a lifetime on the tragedy that has resulted.
“Heart disease” is a generalized label that gathers into “it” all the possible symptoms associated with “abnormal heart behavior” but medical thinking does not stop at this point of generalization: analysis of the separate groups of symptoms that correspond to specific physical disease, damage, malfunctioning and causes is attempted: is this a birth defect of the heart itself, damage due to infection or environmental exposure, a genetic condition that leads to a malfunction in the circulatory system, or “wear and tear” due to occupation and lifestyle? This analysis is necessary to corrective intervention, appropriate treatment and prevention.
The advent of “Autism” the label shows (ironically, like “regressive” autism itself) regressive thinking: sweep any and all symptoms “thought or assumed” to indicate “abnormal” development and behavior in children into a big pile, as if symptoms, which may have entirely different sources and causes, are the END POINT of “the problem.” I don’t think that the public, and especially people affected by the “Autism thing”, understand that “Autism” was not “discovered” (like a damaged heart valve) but has been constructed as a category out of diverse and specific diseases, birth defects, genetic changes, unknown and known environmental influences, fear of a child-family “being defective” and socially rejected, American eugenic history, racism, religion, and superstition.
The emphasis is on funding research to “obliterate” unwanted symptoms that may have no correspondence to what is happening to, and within the mind of a specific child or adult. In the meantime, the directive is to find ways to make children “conform to social, cultural and sometimes idiotic standards of behavior which have no physical justification”. Personal preferences shown by children as to what interests them, what foods are appealing, and which are not; what style of learning is advantageous, what type of clothing feels good, and “rates” of skill acquisition that differ from one child to another, have been turned into hysteria over some imaginary “normal human” that does not exist: it’s a culture war that is based in hierarchies of “who counts and who doesn’t”.
The tragedy is that children, who ought to be seen as individuals, are treated as a commodity, who like peaches, chickens or bags of soybeans, must go through inspections at intervals, be graded and accepted or rejected – and labeled – often for a lifetime – and who are destined for the bottom of the social pyramid, the system which determines the allocation of fundamental resources. Additionally, there is a wildly incoherent set of people, believed to be capable of diagnosing and treating autism, from psychiatrists to gym teachers. This is incomprehensible.
The “invention” by the “helping, caring, fixing” industry of a false “scientifically legitimate” range of human “defective behavior” is misrepresented as analogous to the Electromagnetic Spectrum of light frequencies, which true scientific disciplines discovered to be the basis for the “behavior” of the physical universe. This is blatant manipulation of magical thinking (contagious magic) and “imaginary” danger, fear-mongering and social propaganda as “real content” – a deceptive activity (lie) that exploits children and their families, and which ruins the lives of so many people who are caught in this predatory-profit-driven marketing trap.
Also tragic, is the fact that funding for intervention and treatment for children who have specific physical obstacles, and who desperately need correct diagnosis, education, treatment and care is “frittered away” on pointless and misdirected research, endless bureaucratic activity, blah, blah, blah verbiage, outright lies, and of course, on the ever-expanding population of children sucked under the meaningless label “Autism Spectrum Disorders” which purports that hundreds of thousands of children and adults are connected by a plethora of symptoms, including unrelated physical impairments, social objections, cultural distinctions and proscriptions, and lingering, but active, prejudices against “different” individual manifestations of Homo sapiens, the species.
More to come…