Qualified outsiders and maverick insiders are very often right about the need to replace received wisdom in science and society. This site exists to back the best of them in their uphill assault on the massively entrenched edifice of resistance to and prejudice against reviewing, let alone revising, ruling ideas. 
Letters on Autism defend parents’ intuition
Despite the front page meta-story in the Times last Saturday the jury remains out on vaccines and autism, it seems clear. Some letters in the Times yesterday and today include one from Robert Kennedy who suggests that scientific studies which exonerate thimerosal may not have been done well.
Another letter proposes that parental intuition may be a factor strong enough for scientists to take into account.
The New York Times
July 2, 2005
Studies on Autism
To the Editor:
Re “On Autism’s Cause, It’s Parents vs. Research” (front page, June 25):
The thimerosal debate does not pit parents against science but against public health authorities who rely not on science but on the reputations of their agencies to exonerate thimerosal – a mercury-containing preservative once used routinely in vaccines – despite scientific proof that it causes brain disorders.
The four European studies that the Centers for Disease Control and Prevention and the Institute of Medicine principally rely upon (cited in your accompanying graphic) to defend thimerosal were written principally by vaccine industry consultants and employees without revealing the bias of their authors. They are all flawed.
Most glaringly, before banning thimerosal, Denmark registered only autistics who were hospitalized, one-fifth of the afflicted.
After the withdrawal of thimerosal, the Danish government began counting outpatient autistics. The spike in raw numbers made it appear that autism rates increased after the withdrawal of thimerosal.
Clever use of this deceptive data by the study authors allowed the Institute of Medicine to make the case that thimerosal was not linked to autism.
Furthermore, the European studies involved children exposed to a fraction of the thimerosal concentrations used in America.
The institute selectively ignored the hundreds of biological, toxicological and epidemiological studies linking thimerosal to the wide range of neurological disorders, including autism.
This flawed science is the slender reed upon which the entire defense of thimerosal rests.
Robert F. Kennedy Jr.
White Plains, June 27, 2005
The New York Times
July 1, 2005
Is Autism Research Flawed, or Sound? (5 Letters)
To the Editor:
Re “On Autism’s Cause, It’s Parents vs. Research” (front page, June 25):
Not every parent of an autistic child who believes that the relationship between autism and thimerosal is worth investigating is hysterical and ready to do harm to well-meaning scientists. At least, I don’t think that describes me.
We simply believe that this issue warrants a more open investigation.
If the people cited in your article are so concerned about the virulence of these parents, they could let the steam out of this issue by doing one simple thing: Open the Centers for Disease Control and Prevention database to independent analysis.
The C.D.C. has refused to do so, citing privacy issues. The privacy of these records is indeed critical but could be protected and is certainly no more pressing than addressing the roots of a condition that affects more than 500,000 children in the United States alone.
Martin Bounds
Charlotte, N.C., June 26, 2005
•
To the Editor:
As the mother of two children who received an autism diagnosis at 2, I have seen fads, cures and theories about causation come and go.
In the 1950’s and 60’s, parents were blamed for causing autism. The backlash has created a climate in which many parents trust only their own convictions. They are encouraged by unscrupulous promoters of various fad treatments, litigators and politicians who want to “protect the little guy.”
As a founder of the Association for Science in Autism Treatment, a parent-professional collaboration, I urge my fellow parents to seek the science behind any purported treatment for autism and, most important, to educate ourselves on the distinction between science and pseudoscience.
Catherine Maurice
East Hampton, N.Y., June 25, 2005
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To the Editor:
The American Academy of Pediatrics concurs with the conclusions of the Institute of Medicine and others that there is no link between exposure to thimerosal-containing vaccines and autism.
Vaccines are one of the greatest health innovations; we worry that as more parents hear negative stories about vaccines and refuse to immunize, vulnerable children will suffer to an even greater degree.
The member doctors of the academy deal with children and families with autism every day. We’re working hard to help our members detect autism early and to treat it in the most responsible, effective manner.
We are concerned that the attention being paid to unsubstantiated adverse effects of thimerosal will result in distraction from legitimate efforts to identify the cause of autism and will lead to ineffective and unsafe attempts at therapy.
Carol D. Berkowitz, M.D.
President
American Academy of Pediatrics
Elk Grove Village, Ill.
June 29, 2005
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To the Editor:
What concerns me most is not whether or not thimerosal causes autism. It is that the “experts” feel they have the authority to label parents of autistic children as lacking credibility just because there is no scientific evidence, they say, of the harmfulness of thimerosal in vaccines.
These children are the evidence, and their parents are the experts. Pretending that a problem doesn’t exist because it hasn’t reached some statistically significant number is disturbing.
How about asking the scientific community for evidence of the complete safety and efficacy of these and all drugs? Without such evidence, most parents will just have to rely on gut feelings. We can’t wait for the science to catch up.
Belinda Aggarwal
Hartsdale, N.Y., June 25, 2005
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To the Editor:
Your dismissive tone toward parents and alternative therapies is disappointing.
Some years ago, we tried sauna and vitamin therapy for our autistic son. The improvement was dramatic, and I am grateful to his doctors. The alternatives – special schooling, poor quality of life and Ritalin – were far more expensive.
All parents care about is that their child gets well. Our son got well.
Rebecca Madsen
New York, June 25, 2005
As the last letter suggests, parental intuition may yet be valid in some way not yet understood by science. The longer we live the more we realize that establishment science has to be careful in dismissing possibilities which have not yet been reduced to cut and dried studies.
Of course, we realize that tolerance may simply be the influence of aging which notoriously weakens the resistance of the scientifically minded to the possibility of the supernatural in the inexplicable. Certainly it seems that many scientists, even great ones, grow more sympathetic to religion as they grow older.
And we have to admit that the segment last night broadcast on ABC’s 20/20 concerning the two year old boy who seemed to have acquired the aviation expertise of a dead pilot from the Second World War had us baffled, even though the grand old man of skepticism, Paul Kurtz, seemed to think that it was all easily explained by the child listening to his parents and TV.
Whatever the explanation of autism’s boom in the US turns out to be, for the moment the absolute conviction of parents that we have met that the vaccinations preceded very closely the onset of the symptoms in their child is as impressive to us as the massive studies that deny it.
And as long as the cause of autism is unknown, it seems to us that the anecdotal evidence must be taken into account.
Meanwhile, it is impossible to assess the state of play on this issue without a copy of Evidence of Harm, which is a remarkable achievement in its own right. Even handed and temperate in tone, readable yet thoroughly researched, its searching account notes every claim and counter-claim, every charge and counter-charge, and the ins and outs of every study in this still unsolved question.
What it makes clear is why the situation remains unclear. Kirby shows just how many reasons there are for questioning studies, and how they are defended. He shows the way in which the solution to what seems a simple problem—does autism correlate significantly with the use of thimerosal in vaccines or not?—can get thoroughly lost in the professional bureaucracy and politics of modern research, and why there is distrust of its practitioners when their results conflict with personal experience.
Tutored in these complexities, and shown how much lies beneath the surface of modern science, readers are unlikely to be as sure again of the kind of clear cut conclusion they are handed in newspaper reports, even those as well done as last Saturday’s autism piece in the Times.