Too Many Questions from David Kirby and one from Charlie
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.
Tags: asd, asperger, autism, david kirby, mercury, mitochondrial disease, Parenting, pdd-nos, questions, Rhetoric, vaccine court, VaccinesRelated Stories
POSTED IN: Cause, Neuroscience, Parenting, Rhetoric, Science, Vaccines
12 opinions for Too Many Questions from David Kirby and one from Charlie
Regan
Feb 26, 2008 at 8:54 am
Kristina,
I agree that there is a lot of speculation in the etiology of autism, more than a little preexisting belief, and I am also tired of deduced connections based on editing or presentation–such as what might not be stated from the sealed document Mr. Kirby cites from, and hot scoops that sound like making something out of nothing (Joyce Chen’s role in the IAAC). Something that seemed like really reaching for a connection was Mr. Kirby’s suggestion that the first diagnosis of mitochondrial disease coming in 1959 has some kind of significance with the first diagnoses of autism by Kanner 15 years previous and the introduction of vaccines. Putting a diagnostic label on something is not exactly the same thing as saying that it had never existed prior to the creation of the label.
That said, after looking at the information at the United Mitochondrial Disease Foundation
http://www.umdf.org/
I would not find it out of line for a parent to request a screen for a child if it seemed appropriate to do so as part of a differential diagnosis and to follow a physician’s directive of how to treat such if diagnosed. I take heed of their note that correct diagnosis requires specific lab tests and referral to an expert in such disorders to make that determination.
Kristina Chew, PhD
Feb 26, 2008 at 9:52 am
Yes, Kirby’s not coming out of nowhere, of course, though it’s been interesting tracing the trajectory of his speculations, from mercury in vaccines to mercury in vaccines and now mitochondrial diseases…..
Laura
Feb 26, 2008 at 10:44 am
I was the one that commented a few weeks ago on a post you’d written about vaccines and mercury and autism. I had that said that I did not believe that vaccines actually caused my daughter’s autism, but I wondered why she fell so sick and showed signs of regression with each vaccine (specifically the Hep B for some reason). Last week, my daughter was officially diagnosed with autism (we’ve known for a while, just waiting on the professional world to get their act together) AND a team of geneticists talked to us about how sick my daughter has been in the past and the possible connection to a mitochondrial disease. To read this latest from the vaccine case is terribly interesting to us. I don’t believe this is what happens with every kid in general (vaccines aggravating an underlying, undiagnosed disorder and/or causing autism) but I am very sure that the likelihood of that being what has happened with my daughter is high. We’ve suspected this kind of theory for a while but just not known the terminology and disorder to pinpoint, so this is very interesting to us!
S.L.
Feb 26, 2008 at 11:57 am
I just wrote about Kirby’s latest writing. I love your take on it, and Charlie’s question. I’m sick at how Kirby once again twists & tweaks his story, losing most of the facts along the way.
As for the autistic adults you ask of–well, one would imagine that just like Jenny McCarthy, Mr. Kirby might answer that question with:
“That’s a good question. I mean I don’t know.”
or perhaps,
“You know, to tell you the truth, I haven’t really met any.”
Marc
Feb 26, 2008 at 11:59 am
Dr. Chew,
Since we haven’t connected before I’ll refrain from a more informal Kristina. I appreciate your candor and appreciation for good science. To clear any further readers of this post I’ll put forth my biases strait away:
1. I am an Aspie with a dry, dark, biting sense of humor, a constant tinnitus, sensory seeking and working as a healthcare provider in a job that requires empathy (oh the irony).
2. I have 3 kids, 1 on the way, 2 with ASD Dx’s and 1 neurotypical.
3. I am a firm believer in the genetic component of ASD in the vast majority of autistics and can trace it right down my family tree.
That said, I did read the article at my wife’s insistence. The article points in a direction that we have been sensing for several years, but still misses the point. At a meta level, the panel’s response really admits to me that there is an immunologic response occurring in some children with these vaccinations that really needs to be researched. Anecdotally, but consistently, the ASD kids and families that we have come into contact with locally and nationally on the board that my wife helps monitor have a common thread: altered immunological systems. Whether it is allergies or other disorders, these people (self-inclusive) just don’t respond typically to the environment.
It seems to use unwise to bombard our next child’s system with vaccines at the pace recommended by the government, especially at the current levels compared to what I received 30+ years ago. Does that mean we won’t vaccinate? Nope, we will vaccinate over a more extended time. Do I believe that mercury is a causative agent? Nope, our more affected child received all of her immunizations without mercury and her brother did have the “tainted” shots.
Finally, would I want a “cure” for my kids and subsequent generations? Maybe, but only if it wouldn’t destroy their personalities and I won’t even get into an existential argument about that. I know how much of a challenge my life is and what my wife has to deal with. What I would really prefer is improved (post-partum) genetic testing that guided healthcare providers and families in what to expect. Why post-partum? Because my all of my kids are fantastic personalities and human beings regardless of their abilities. I am 100% pro-life and the evidence of the dearth of kids with Down’s should be enough eugenics to tell us the outcome of future pre-natal genetic testing for ASD.
Kristina Chew, PhD
Feb 26, 2008 at 1:51 pm
@Laura,
thanks for sharing about your daughter—-hope she is well and that getting the diagnosis helps to move things forward.
@S.L.,
and thanks for your your post—this latest by Kirby really reminds me more than most of his writing of Evidence of Harm. Lots of facts and references to science; not so much about autism.
@Marc,
autistics on my family tree too and (I’ve mentioned in earlier posts and comments) my husband has severe ADHD. I’ve more to say about all you say—-I would be interested too in post-partum genetic testing—-and very happy to be the mother of my boy with his, yes, fantastic personality.
Alicia Sparks, NAMI Affiliation Leader
Feb 26, 2008 at 2:42 pm
But these are kids and individuals before they are a cause […]
Oh, how true that is. Charlie is lucky to have such a mom!
resilientmom
Feb 26, 2008 at 2:51 pm
Kristina,
Forgive my redundancy; perhaps I have visited this Kirby issue with you in the past. However, given that we vaccinated all 4 of our quadruplets, and only one has autism, it begs “question” about Kirby’s questions.
Full disclosure reminds me that at an Evidence of Harm lecture, David Kirby’s direct question to me was if our child had any incidents at birth or in early life, which he in fact did. Our son had a portion of a lung removed at 6 months of age.
Does that mean…no lung…vaccine…autism?
My rational psyche says no.
xRobin
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