Life with Charlie means that every day is full of lots of questions:
Will he have a good day at school today?
Will he be okay with one of my students babysitting him?
What would he do—what will he someday do—without Jim and me?
These days I generally have answers for the first two questions: Charlie likes the school program he is in, is learning and likes his teachers and classmates. After not wanting to get out of my car to meet the student babysitter, he spent a pleasant hour with her last Thursday. In the usuals of our life with autism every day, we’ve a sense of what might happen, and of how to help Charlie do his best.
But the third question—the life that Charlie will lead without Jim and me to help him, guide him, protect him, love him—there are no certain answers, there is a story I know I won’t know. And slowly, slowly—maybe because we have better answers for the first two types of questions—I am learning to live with the gaping uncertainty of the third. I am learning that there aren’t answers to every question and that maybe it’s not ours to know every single one. Rather than give myself headaches and ulcers and worries upon worries—all of which render me less helpful to Charlie, here and today—life with Charlie teaches me that I can live with the uncertainty and all the questions, and the reason I can is because of Charlie himself.
I do try to learn as much as I can. I try to understand as much as I can about autism; about IDEA; about employment and housing options for disabled adults and how in the world these might get funded. I try to understand how the medications Charlie takes work and how to implement the teaching/speech therapy/sensory/relaxing techniques countless of Charlie’s teachers and therapists have taught me. I try to understand autism science and autism pseudoscience. One thing I learn and am reminded of regularly is you don’t need certain answers—-about what might cause autism, about the biology of autism—to be able to help your child on the road to a good life.
Journalist David Kirby asks a lot of questions—-nine in boldface, and many more besides—in a recent Huffington Post piece on a vaccine-autism case in the Court of Federal Claims. In this case, as Kirby writes, US Assistant Attorney General Peter Keisler and other Justice Department officials conceded on November 9 that a child “had a pre-existing mitochondrial disorder that was ‘aggravated’ by her shots, and which ultimately resulted in an ASD diagnosis” or, more specifically, in a diagnosis of “regressive encephalopathy (brain disease) with features consistent with autistic spectrum disorder, following normal development.” From here, Kirby posts his nine questions, suggestively speculating that there might be a connection among “vaccines, mitochondrial disorders and a diagnosis of autism, at least in some cases” and going so far as to suggest that some type of “vaccine aggravated mitochondrial disorder” is “mimicking” autism—just as, a year ago, Kirby speculated that what we call “autism” in children with various gastrointestinal symtoms is not “autism,” but (Kirby’s neologism) “Environmentally-acquired Neuroimmune Disorder” or “E.N.D..”
It is no surprise that Kirby keeps on making up elaborate names for some disease “mimicking” autism: I’ve read his book and numerous essays and blog posts and interviews, and each time am left with the sense that he indeed is not talking about autism. Kirby’s writings are packed with scientific references and just enough jargon, with a kindly phrase interwoven to acknowledge the suffering of those with autism and of those who take care of him. But I remain hard-pressed to find an actual reference, a basic description, of an autistic person in his writing, beyond (on and off last year) rather purplish descriptions of rivers of diarrhea spewn forth on carpets. There is no mention of how autistic children (however they became autistic) grow up into autistic adults; how they learn to communicate, to read and write, to ride bikes, to tease their parents, to go to church, to clean up the carpet and carry two heavy bags of groceries while following mom across a busy parking lot.
The absence of autism in Kirby’s writing leads me to speculate, perhaps this is why he keeps asking all of these questions, about whether this or that environmental agent is a factor in a putative “autism epidemic.” I’m always interested in new questions, new research, new ideas, but—as I noted above—I’ve learned to live with a lot of questions and only murky answers, if that. I’m sure Kirby will keep asking the same sort of questions in the hunt to chase down a cause for autism: But these are kids and individuals before they are a cause, and if we start with them and how to answer their questions—”dad home soon?” was Charlie’s tonight—we’ll have found the best evidence for our own doubts and queries, for our questions.
And maybe even some for David Kirby, too.