David Kirby Wants to Move On
June 18, 2007 by Kristina Chew, PhD
Filed under Health
Journalist David Kirby, whose book Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy (2005) has become a sort of fundamental text for those who believe that their children became autistic from mercury in vaccines, says that he is ready to move on—-that he is “just plain tired of autism and the fight over its cause.” Tired of Autism Yet? is the title of a post by Kirby in today’s Huffington Post. He writes that that “fight” that is being waged so “bitterly” is “over the alleged link between vaccines and autism right now”; Kirby notes that this “grueling debate” is being played out in federal courts (in the vaccine court hearings going on as I write) and “even within prominent American families” (that of Bob and Suzanne Wright and their daughter, Katie Wright). Kirby assigns himself the mode of referee—the reasonable guy who blows the whistle and asks, “guys, why can’t we all just get along?”—and proposes a solution that (in his view) is simple in its elegance:
All we need do is conduct a thorough study of vaccinated and unvaccinated children, and see if there is any difference in their rates of autism spectrum disorders.
Kirby even mentions some populations of unvaccinated children who might be possible candidates: “a large medical group in the Chicago suburbs called Homefirst Health Services, which is largely geared toward parents who homeschool their kids, and who tend not to vaccinate” and also the children of chiropractors, of Scientologists, and of the Amish.” Just do this study, the question will be decided, the question will be decided, and a “joyous moment” will ensue that will result in Kirby “shouting from the rooftops” and “blissfully” not having to write about vaccines and autism again. He writes:
I take no joy in pointing to vaccines as a possible contributor to autism, and I would be only too happy to declare the hypothesis dead in the water, and move on with my (admittedly autism-free) life with friends and family.
I take great offense at what Kirby writes in the Huffington Post today, June 18th, Autistic Pride Day. I take great offense at him saying that he is “tired of autism.” Autism is a lifelong neurological disorder; parents, like my husband and me and so many of our friends, whose children are autistic may feel very tired at the end of the day (and in the morning when we groggily wake up), but can never walk away from autism. To walk away from autism would be to walk away from our children. Some parents may wish that they could walk away from autism—could “take the autism” our of their children—-and some children, thanks to education, therapy, and treatment, will be able to be mainstreamed in school, to go to college, to get jobs and live independently. Some children, like my son, will require more supports throughout their lives. I am never too tired to answer my son’s call of “Mom. Mom, Mom!”.
My life is never going to be “autism-free”—and I am very disturbed by that phrase in Kirby’s post. “Autism-free” echoes the term “cancer-free“; this term suggests that autism is some kind of disease that, like a tumor, can be taken out of a child. By using such a term, Kirby reveals how little he understands about autism. By focusing so exclusively on the possibility of mercury in vaccines as a cause of autism, Kirby has thoroughly limited his view of what autism is—he has thoroughly misrepresented what autistic persons are. My son is a lot more than a poor child suffering from “rivers of diarrhea” who is subjected to “dog-training” type teaching (as Kirby refers to ABA in Evidence of Harm, p. 15). I suppose I ought myself to be “joyous” that Kiby “would be only too happy to declare the hypothesis dead in the water”—this hypothesis being that mercury in vaccines caused an “epidemic” of autism; this hypothesis being nothing less than the thesis of Kirby’s Evidence of Harm. Kirby has indeed “moved on” from autism, as he tells us in his post today, he has a contract for a new book about “corporate vs. environmental health.” He wants out of the “mess” that has only started with the first case, of Michelle Cedillo, being heard in “vaccine court.” “I am not an autism activist, and this is not my crusade,” writes Kirby.
I am an autism activitist, advocate, blogger and mother; I am on no crusade, no mission, not even a fight, really, on behalf of my son. I am not Erin Brocovich, and I am on no desperate search to find “the answer”—the magic pill, the most talented therapist—-to help my son. Every day, he learns a little more how to help himself and so he helps me.
In the constant joy and hope I feel in me when Charlie calls me and my husband and when Charlie sits up so straight upon his bike, I suppose I have to count myself among that strange breed of parents who actually accept their child being autistic and even find the different and the quirky about my son cause for “celebration.” Kirby refers to parents like my husband and me as a sort of “fringe,” perhaps as freaks: We are among those “handful of fringe parents who believe that autism is some altered state of being, worthy of celebration.” This statement is further proof to me that Kirby ought really to spend some more time with autistic children and persons, so that he can find out why us “fringe parents” spend so much time advocating for our children (more likely with the Child Study Team rather than in court), worrying about our children, and just plain with our children.
But, based on Kirby’s hopes for a blissful “autism-free” life writing about “corporate vs. environmental health,” he is not thinking to spend more time or words on autism and autistic children, and that does not seem so bad to me. More than a few parents and teachers of autistic children have said to me that life with autism is a marathon not a sprint, and it seems that David Kirby, being “just plain tired,” is ready to pass on the baton. The soles of my running shoes (and of Jim’s) are well-worn, but our stamina is good, as a result of running with Charlie, who has autism, every day.
This guy is an absolute jerk. If I were one of the Mercury Moms who worship him, I’d be extremely upset that he’s celebrating the fact that he’s getting rid of us by moving on to his next cause du jour.
Good riddance, Kirby! We’ll celebrate the day when autism is Kirby-free.
I happen to agree with him.
For a parent with a recovered or almost-recovered child, Kirby’s words ring true. My child has come so far thanks to biomedical treatments. I can’t imagine what life would be like if I had just sat back and done nothing. I would have been passing on all the things my child can now do – things that are joyous parts of childhood – like riding a bike, swimming, joining boyscouts or girlscouts, being in a school play.
My son is autistic – classic, Kanner autistic.
He has never been vaccinated.
I don’t think another study is necessary. The SF Chronicle article from a couple posts back includes a graph showing that autism cases in Calif. continue to go up. With thimerisol being eliminated between 1999 and 2001 the rates should have started going down around 2004/2005 if vaccines (thimerisol) was the problem.
Another problem with Kirby’s proposal of studying unvaccinated vs. vaccinated kids from 1999 is that they would not be a randomly selected group. The kids that were not vaccinated may well share certain genetic/physical/mental characteristics inherited from their parents that are different from the population as a whole. Since they were a self-selected population, statistically any studies involving them would be invalid or at least have major flaws.
Another related point, and this is purely personal opinion, is that I believe there may be an actual increase in the rates of autism but that it is genetic. In the past 30 years or so there has been a tremendous increase in professional opportunities for women. Many more women are in high level corporate and technical jobs than say in the 1940’s or 50’s. The way this may relate to autism is that perhaps genetically if two highly intelligent people have children, there may be something that happens in the development of the fetus and a child with autism results. With just a slight change maybe the child would have been extremely intelligent (or perhaps is and cannot necessarily communicate that knowledge). I don’t know, but if you think back to the 1950’s highly intelligent men would have much less chance to meet and marry and have children with women that were their equal because they would not have been going to college and working alongside them in professional capacities as much as in the last 20 – 30 years. I’m not saying that there were not just as many highly intelligent women, proportionally, in 1950 as today, just that those women would have had a much greater chance of marrying a man of ordinary intelligence and vice-versa. Today we end up with a much greater chance of highly intelligent people meeting and having children and maybe that is the reason why the rates are so prevalent in NJ and N Calif. were there is such a concentration of these types of people.
Not sure if this graph from the SF Chron. will come out properly here but I am going to try and embed it. Sorry to be so long-winded.
http://www.sfgate.com/c/pictures/2007/06/17/in_autism.jpg
Thank you Kristina,
My sentiments exactly.
Sorry, one other thing i forgot in the first post…
I suppose I have to count myself among that strange breed of parents who actually accept their child being autistic and even find the different and the quirky about my son cause for “celebration.” Kirby refers to parents like my husband and me as a sort of “fringe,” perhaps as freaks: We are among those “handful of fringe parents who believe that autism is some altered state of being, worthy of celebration.”
Kristina, It’s not really clear what Kirby is referring to when talking about “fringe parents” but I don’t think he is talking about parents like you and Jim. I think he is referring to the parents of the “Indigo Children”
I interpreted his use of “fringe parents” as referring to parents who are part of “the neurodiverse” (his phrase).
I’d be glad to hear his own clarification about what he meant!
Kristina –
Thanks for your comments on this. Needless to say, I agree wholeheartedly.
These comments by Kirby smack of someone who knows they are in the wrong, knows they will nenver be exonerated, and will beat a hasty retreat so as not to lose face.
Appalling.
Minnie, Charlie is doing 2 out of the 4 on your list—-he wasn’t ready for boy scouts a few years ago. But participating in a play…….. Lisa has written about her Aspergers son Brandon in one. I am looking forward to the day Charlie is in a piano recital.
Leila, I think he could have said what he said without talking about an “autism-free” existence with terms like “joyous” and “blissful.”
I can understand the outrage you feel about Kirby’s less than elegant way of declaring that he is tired of autism. However I can’t help but agree with him that more research into environmental triggers of autism would be a good thing.
As the proud parent of two young autistic girls who happen to be identical twins I can honestly say that I do not believe the party line that genetics is the sole component in why they are autistic. The funny thing about identical twins is that (in my experience at least) when something is genetic they are in perfect lockstep. But in areas that aren’t they aren’t any closer than other siblings would be. When it comes to their autism they are similar in that they both have it – but the symptoms and severity are different. That tells me that there is something other than genetics playing a role here.
They have both come far with biomedical treatments and therapy. But I don’t think the therapy would be nearly as effective without the biomedical part.
So I would have to agree with what Kirby suggests in his “I can taste the shoe-leather” way – having more unbiased studies of what environmental factors could play a role in autism would be a good thing.
Can’t say I’ll miss him. It’s a shame he’ll leave without understanding selection bias.
Someone will perhaps step into fill his place.
MJ, Perhaps it is most likely that there is no “single cause” of autism—-I thought the combination of environmental/biological and genetic research presented at the Eden/Princeton lecture series was a helpful perspective.
We went swimming today. It took a few timid attempts for Ezra to remember how much he enjoys the aquatic center, but the coolest thing was that he seems to be a natural at swimming. I mean, he was never instructed (or chelated), but if you support his tummy, he extends his legs and kicks while propelling slightly with his arms. He also got a particular thrill out of my underwater manual alphabet, responding with an underwater “i love you”.
I can’t see that either one of us is “missing out” on any joy!!
My daughter has learned to do many things and now is learning to ride a bike at 7 1/2. I feel that she can learn to do these things and still be autistic. They do not have to be mutually exclusive if you have the right type of support and education.
My child had severe hypotonia, borderline CP was what the doctor said. That was why riding a bicycle and swimming was such a big deal for us. It was something that education would not have helped with. Biomed helped.
Mfano,
The moniker is not meant to offend. I do know the tragic tale of Minimata. The moniker was chosen because my child had high levels of mercury. My child had almost all of the symptoms listed in the Bernard et all paper, table 1
http://www.generationrescue.org/pdf/bernard.pdf
Did she have a dual diagnosis, if I may ask?
Yes
It’s MinAmata disease. If you look at the pictures of the victims, you’ll see people severely deformed. It doesn’t look anything like autism, just like any mercury poisoning symptoms are different from autism.
Outstanding post, Kristina….
From one “fringe” parent to another, I celebrate JP’s encyclopedic knowledge of certain subjects; I celebrate Eleanor’s musical ability; and I celebrate Julia’s (my NT 15-year-old) sense of humor. They are amazing creatures, autism or no.
And remember…. running with autism not only creates stamina, it strengthens the heart!
AJ
Thanks for summing up my own feelings about Kirby’s post, Kristina. (And special thanks to Leila for the priceless remark about “Kirby-free.” I think all top-quality sites about autism — including this one, of course — should start sporting a “Certified 100% Kirby-free!” stamp.)
Thanks qchan63. I am wondering how long he may have this “autism fatigue” may have been going on.