1. A Parent's Journey
Led-On by Hope
Waking up to reality
A year or so after my son was diagnosed with autism, with no hope for cure in sight, I was feeling desperate for anything that might help him. My wife attended a conference about “biological treatments for autism.” She came back extremely excited, having heard story after story about “hopeless” cases of autism “cured” by a variety of simple treatments.
I was initially skeptical, but my desperation soon got the better of me. We started out with the simple therapies—vitamins and minerals—but soon moved on to the “hard stuff": the gluten- and casein-free diet, secretin, and chelation. Some of it seemed to work—for a while—and that just spurred us to try the next therapy on the horizon. I was “hooked” on hope, which is more addictive and dangerous than any “street” drug. Meanwhile, my second son developed an autism-like disability at the age of 18 months.
The next year, I accompanied my wife to the autism conference and was dazzled and amazed. There were more treatments for autism than I could ever hope to try on my son, and every one of them had passionate promoters claiming that it had cured at least one autistic child—usually their own.
There were blood tests, urine test, hair tests, saliva tests, brain wave tests and eye tests, all claiming to be able to find the specific cause for a child’s autism. And they had specific treatments for each of those causes. Sure, some of them were contradictory, but nobody seemed to mind that. What really caught my interest was the proposition that thimerosal, the mercury-based preservative in vaccines, caused autism and chelation therapy could cure it. Advocates of this idea spoke authoritatively, with impressive lists of references and well-designed PowerPoint slides. I was intrigued even though the children I had seen with mercury poisoning did not behave like my autistic son and the recommended dosage for the chelating agents made no sense to me.
My next step was to write a review paper on mercury toxicity and its treatment that might improve what the chelation advocates were doing. Leading proponents were recommending that the chelating agents be given every three hours around the clock for up to four weeks, an obvious source of stress for already overstressed parents. In addition, many of these chelation “experts” predicted dire consequences if a dose is missed or even given an hour late. My paper simply outlined the then-current information about mercury poisoning and chelation therapy for mercury, using articles from peer-reviewed journals. Among other things, it debunked the dosing ideas I had encountered at the conference.
Before long, I was invited to join a conference to set up a “protocol” for using chelation in the treatment of autism. I attended and, for the first time, got to see many of the leading lights in “non-conventional” autism treatment outside of the conference hall. Most of these people appeared to hold sincere beliefs but based their assessment of their therapeutic efforts on anecdotes, surveys, and simplistic studies. I thought they would welcome a more rigorous scientific investigation of their methods and results. After the conference, I was asked to compile a “consensus report.” I readily agreed, thinking that my editing could temper the unscientific thinking of the rest of the group. However, my editorial control turned out to be nil. The final report included large tracts of material that were the pet beliefs of the senior members of the organization. Worse yet, even though I disagreed with significant portions of the report, my name was listed as sole author! I have been able to get my name removed from the "official" document, but Internet copies of the original abound.
I was subsequently invited to speak at conferences about chelation and autism and went, with an increasingly heavy heart, until I finally could do it no more. Getting to know the big names in “alternative” autism therapy had exposed me to some ugly truths. What finally changed by feeling, however, was further observation of my children.
After years of “supplements,” restrictive diets and “unconventional” therapies (too many to list), our boys were improved, but were a long way from being cured. We were forced to carry their special foods with us whenever we left the house, lest a molecule of gluten or casein catapult them back to where we had begun. We were nearly broke, despite both of us having well-paying jobs, and we were on the verge of exhaustion. The beginning of the end was when my wife, suspecting that some of the “supplements” we were giving our older son weren’t having any effect, stopped them all—without telling me. I saw no difference, even after two months (when she finally told me). We had been chasing our tails, increasing this and decreasing that in response to every change in his behavior—and all the while his ups and downs had just been random fluctuation. My eyes began to open.
The final step in my awakening came during a Disneyland vacation. My younger son was still on a gluten- and casein-free diet, which we both swore had been a significant factor in his improvement. We had lugged at least 40 pounds of special food on the plane with us. In an unwatched moment, he snatched a waffle and ate it. We watched with horror and awaited the dramatic deterioration of his condition that the “experts” told us would inevitably occur. The results were astounding—absolutely nothing happened. I began to suspect that I had been very foolish.
In the following months, we stopped every treatment except speech and occupational therapy for both boys. They did not deteriorate and, in fact, continued to improve at the same rate as before—or faster. Our bank balance improved, and the circles under our eyes started to fade. And quite frankly, I began to get mad at myself for being so gullible and for misleading other parents of autistic children.
Looking back on my experiences with "alternate" autism therapies, they seem almost unreal, like Alice's adventures in Wonderland. Utter nonsense treated like scientific data, people nodding in sage agreement with blatant contradictions, and theories made out of thin air and unrelated facts—and all of it happening happening right here and now, not in some book. Real people are being deceived and hurt, and there won't be a happy ending unless enough of us get together and write one.
My personal journey through the looking glass has ended. I stepped into “alternative” medicine up to my neck and waded out again, poorer but wiser. I now realize that the thing the “alternative” practitioners are really selling is hope—usually false hope—and hope is a very seductive thing to those who have lost it. It is really not surprising that people will buy it even when their better judgment tells them not to do so.
I suspect that the majority of the people who promote “unconventional” or “alternative” treatments for autism truly believe in what they sell. They deserve pity rather than scorn. Most of them will never realize what a disservice they provide to the very people they are trying to help. It is not my intent to make them “see the light.” It is the autistic children (and adults), their parents, relatives and friends that I am trying to reach, in the hope that they won’t have to go through what my family has experienced. It is to them that I dedicate my efforts.
James R. Laidler, MD
2. A Letter to an Editor
I’m concerned that the misinformation and inflated statistics in a another reader’s letter about vaccines are seriously misleading. I’ve been looking into the issue for more than 14 years since my own son went through a diagnostic process for Tourette Syndrome.
First, falsely written is that babies received 100x the daily exposure to mercury. That could only happen if a child received many years worth vaccines all at once. In fact, at the time when the mercury containing preservative was still used, a child received up to only 1.9 µg/kg body weight per week when receiving vaccinations, which is well below the World Health Organization’s limit of 2.8 µg/kg per week. (That recommendation is for methylmercury, but the ethylmercury in thiomersal-containing vaccines is cleared by the body, and not accumulated the way methylmercury is. The half-life of ethylmercury is less than a week, and doesn’t compare to methylmercury’s 1.5 months.)
Second, another claim that a 700% increase in autism is curious. The diagnostic criteria for autism changed in the 1980’s, and that increased the rate to 1 in 166 people. This rate has not changed, and remains steady. Compare that to the rate for schizophrenia of 1 in 100. Hershel Jick, an associate professor of medicine at Boston University School of Medicine noted that children diagnosed with “behaviour” and “developmental” disorders, but not autism, decreased by about 20% per year from 1992 to 2000, but the diagnosis of autism increased by 20% per year during that time period - a far cry from the 700% claimed by the other writer.
Third, the article that is referred to is from Journal of American Physicians and Surgeons was written by a father and son team (Geiers), and is not based on any current peer reviewed studies to back up their opinion. The Geiers have been charged with not being qualified as experts. There were numerous government studies that raised the concern of ethylmercury dosages, as vaccines were added to the recommended schedule, and the preservative was phased out between 1991 and 2000. The one live-viral vaccine children do get when they start showing signs of autism (MMR) cannot even contain the preservative
The Geiers and other folks like Robert Kennedy have repeatedly tried to sue vaccine makers and lost, because the evidence of sound studies repeatedly shows autistic children were not poisoned. Developmental disorder rates actually rose when vaccine rates fell and children start to get the diseases again. Fombonne et al found pervasive developmental disorder rates significantly increased when measles-mumps-rubella vaccination uptake rates significantly decreased in Quebec around 1996 (PEDIATRICS Vol. 118 No. 1 July 2006, pp. e139-e150).
In fact, it is the Geiers who are endangering children. They still offer a Lupron treatment to "remove" the already cleared ethylmercury from autistic children, even though the treatment has hazardous side effects and the children never “recover” from their autism. Mercury poisoning causes dementia, and prevents proper formation of the sheaths covering nerves. Autistic children have the opposite problem of elevated brain growth, suffer from developmental delays, and autism rates in boys are four times greater than for girls.
I may be just a mom, but I get all of my children their vaccinations because vaccines are continuously becoming safer and more effective, and the ethylmercury was removed from childhood vaccines before it became a health threat (it was never used in MMR). I would encourage fellow parents to look into statistics and review information critically when they come across literature like that other letter on vaccines.
T. Gill, Canada
3. What Matters
Did I shampoo our dog?!
Or was I specially chosen by god?
When pregnant was I stressed?
Or did the devil my son possess.?!
Is C the next stage of evolution?
In the air was there pollution?
Did I conceive in late spring?
Do I remember if it was raining?!
Is C a crystal child waiting to ascend?
Or is he one of the mutant X-Men?
Was it the dental fillings I had?
Or the triple vaccine MMR jab?
Was it my lipstick that was red?!
Or the mobile phone near my head?
Could it be a food allergy?
Or my disordered personality?!
Was it the smoking and drinking which was bad?
Or C having an older dad?
Was I a cold refrigerator mom?
Who always had the TV on?
Or does C have an extreme male brain?
Many things that would explain!
C wasn’t held to ransom,
Nor is he a victim or a madman.
Words hit like a fist - like "Retard"
Or he’s a brat whom I didn’t spank hard.
It doesn’t matter to me what was the cause
Or the whys and wherefores.
As if you look at myfamily tree
Its more than plane to see!
What matters is the here and now,
Not the why, not the how.
Autism has made C who he is today -
I wouldn’t have him any other way.
I support C and help him as best I can.
I love him for who he is. C a wonderful young man.
-Reprinted with permission from the Author
4. No Cure Please
A lot of people on the spectrum, like myself, have a big issue with Jenny and all the parents who religiously follow her garbage advice.
I've never tried any of this quack nonsense.
Like most Autistics, I don't want a cure, I see Autism as a blessing and a gift.
The idea, that we are diseased and in need of a cure offends me.
I think that part of the story is always missing, when treatments and cures are discussed.
If parents of Autistic children knew, that most Autistic adults are not suffering from Autism, maybe they wouldn't fall for all that quack nonsense in some ill-advised attempt to help their children.
It would help us much more, if people could just accept that our brains work differently.
-Andra (Formerly http://thedailygonzo.blogspot.com/)
5. Other parents that wish to be heard:
Suzanne Maher of Quincy, Massachusetts writes:
"Finally, I came across this site and I was so releived! From day one I have been so mad at Jenny Mccarthy, at first I read the book tried all the stuff and it did nothing. I am mad she puts her son in the public eye with this "he is cured" My son is 6 he has autism. I dont try to "cure" him.
I help him and love him and educate myself with tutors, schools and materials that will help him communicate better. I love him just the way he is. I "for him" do everything I can so he is happy. And as far as vaccines my son was dx at 1 1/2 he got his shots at 3. Thank you for setting up this site I have many friends I will send it to."
Jeanette ODonnell writes:
"Every time Ms. McCarthy is scheduled for a television show, I offer my children to be used as evidence that a child with Autism can improve without all of the "biomedical" interventions.
We have 6 children. 5 with Autism. 2 of them have gone from having severe autism to being so mild, they are hard to distinguish from their peers.
I have contacted every show that is going to have Jenny McCarthy on as a guest. I have written everyone from Oprah, Billy Bush from Extra, Larry King Live, Montel, etc. I am told that, while our children's stories are compelling, they are looking for stories just like Jenny's...."cured" through "biomedical" interventions.
I try to explain to the producer that they ARE NOT showing both sides to Autism and what Autism truly is.
The producer's want to show tragedy to triumph and promote Jenny's current book (whatever she is promoting at that time)... I find journalist very one-sided when it comes to Autism.
Our children are well-behaved and all inclusioned. Jenny claims her child attends regular school...what she doesn't say is that the school is in her home and he is the ONLY student.
If she does occasionally get her facts straight, nothing she says makes sense."
Why Stop Jenny McCarthy?
She talks trash about autism
She talks trash about immunizations
She talks about trash treatments
Stop the trash talk Jenny McCarthy
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