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The Wrongs and Rights of Reply

Posted Dec 14 2008 11:05pm

The new edition of the NAS members magazine, Communication contains a “Right of Reply” to Mike Fitzpatrick’s excellent article, “Defeating autism - a damaging delusion” that appears in the previous issue, by Stephen M Edelson, who has inherited Bernard Rimland’s mantle at the Autism Research Institute. Edelson claims that Fitzpatrick’s objection to chelation as a treatment for autistic children amounts to an abuse of their human rights.

his negative outlook on biomedical interventions, such as chelation, are [sic] best viewed as a human rights issue.

Chelation is a good example of the discrimination against those on the Autism spectrum  regarding appropriate medical treatments. Fitzpatrick has been a longtime, outspoken critic of chelation. (Chelation involves a medication, such as DMPS or DMSA, which removes neurotoxic heavymetals, such as lead and mercury, from the body; it is given under the supervision of a doctor.)

Except that autism practitioners who offer chelation therapy do not have to be medical doctors to be listed on Edelson’s own Defeat Autism Now list of practitioners. The list carries this disclaimer.

The following are practitioners who have requested to be listed as providing DAN!-based interventions for helping autistic patients. Most are physicians, others are licensed health-care professionals in medically related fields.

We do not at present have any means of certifying the competence nor quality of practice of any practitioner. We hope to be able to do so in the future.

Some of these “others” are naturopaths, homeopaths, chiropractors, nutritionists - all are allowed to advertise chelation therapy for autistic children on Edelson’s list and some even offer IV chelation.

Edelson fails to mention that oral DMSA is the only medication approved for heavy metal detoxification amongst children in the USA. Everything else is experimental. Under Edelson’s leadership DAN/ARI gives its imprimatur to unqualified personnel who experiment on autistic children. If chelation is indeed a human rights issue it is Edelson not Fitzpatrick who is abusing those rights in autistic children.

If an individual tests with very high levels of one or more heavy metals, chelation is the treatment of choice throughout the medical profession. If test results indicate very high levels in someone on the autism spectrum, isn’t this person entitled to the same medical care as someone without autism? If this rather severe medical problem is ignored, heavy metals can lead to exponential brain damage, and a worsening in cognitive and behavioural abilities.

This is a strawman. Of course every child is entitled to medical treatment. But Edelson’s own protocols on page 24 of ARI publication 40 (April 2007) do not suggest chelation for clinically high levels of toxicity. Instead they propose a provoked test. Give the child a chelation agent that scours its system for heavy metals and compare the results with baseline levels in unchelated subjects. By analogy, place a wet sponge over a bowl and measure its wetness by the amount of water that drips into the bowl. Then take an identical sponge and squeeze it over the bowl. Measure the amount of water in the bowl and use this to declare that the second sponge is wetter.

So far so silly: bad science leading to nonsense conclusions. Laughable. But there was no laughter in the death of Tariq Nadama. Tariq was a five year old autistic child, taken from Britain to the USA to access biomedical treatments for autism that are not commonly available in the UK. He was taken to see Anju Usman, a senior DAN practitioner who referred him on to a retired ear nose and throat specialist who now offered alternative therapies for autism.

In his article, Fitzpatrick brings up the accidental death of Tariq Nadama after chelation treatment. What he does not tell the reader is that Tariq was given the entirely wrong drug, one with a similar name and label that was nearby on the office shelf. Regrettably, these drug errors do happen in hospitals and doctors’ offices and Fitzpatrick has exploited this unfortunate incident several times in the past without explaining the complete story. (I have already corrected Fitzpatrick in a previous issue of Communication, and I am disappointed that the editor knowingly allowed such half-truths to be disseminated to NAS’ membership once more.)

Steven Edelson is the director of the Autism Research Institute (ARI) in the USA. Defeat Autism Now (DAN) is a project of ARI that provides a list of clinicians who follow the DAN method. One of those clinicians is Dr Roy Kerry. I find it inconceivable that Edelson does not know that Kerry, the doctor who killed Tariq, was admitted to the DAN list after Tariq’s death and while he was still the subject of both criminal and professional investigations. It is a reasonable assumption, therefore, that Edelson, as Director of ARI would have acquainted himself with the particulars of this case. After all, his predecessor, the late Bernard Rimland was very clear that Kerry was not a DAN doctor at the time of Tariq’s death and that Kerry was not following DAN protocols when Tariq received the fatal dose in his office.

So why does Edelson give us the fairy tale of the wrong drug on the nearby shelf? Does he seriously believe that Kerry accidentally reached for the wrong drug three times in a row? It was the third round of treatment with the same drug that killed Tariq. And how can he suggest that Kerry reached for the wrong drug by accident when it was the only drug on the shelf? I have made it clear in the past, quoting from the official investigation, that

72. Respondent stated to Inspector Reiser that disodium EDTA is the only form of EDTA that he stocks in his office.

73. Respondent admits that CaNa2EDTA is available but he has never used this agent.

Kerry only ever used “the wrong drug” (disodium EDTA). He had never stocked the “right drug.” (calcium disodium EDTA) Neither of these drugs is on the DAN list of recommended treatments for autism anyway. And Edelson set great store by this in his previous letter to Communication which insists that

(Tariq) received disodium EDTa as a chelating agent; and this is not part of what is taught in the DAN! approach

This rather begs the question. Why did one of DAN’s leading practitioners, Dr Anju Usman, send Tariq for a treatment that was not sanctioned by DAN? And when the treatment proved fatal, why was she not disciplined and why was the guilty doctor then admitted to the club?

Edelson concludes with this.

Fitzpatrick condemns parents who choose to help their children by using biomedical treatments. Over the past 20 years, scientists have clearly documented immune system dysfunction and gastrointestinal problems associated with autism. Many of these problems can be treated successfully using established medical treatments. The published scientific foundations of many biomedical approaches can be found at www.autismresearchsummaries.com

Fitzpatrick does no such thing. He condemns practitioners like Edelson who prey upon parents and exploit their fears. He challenges the science that Edelson claims to support his contention for a link between autism, immune dysfunction and gastrintestinal problems. If FitzPatrick is right, Edelson’s treatments are quackery based on bad science.

Edelson should answer Fitzpatrick’s scientific and medical objections to his protocol. Instead he resorts to impugning Fitzpatrick’s motives, which suggests that Edelson has no answer to Fitzpatrick’s objections. I urge everybody to read Fitzpatrick’s new book, Defeating Autism: A Damaging Delusion, (available in the UK and the USA ) and then judge the adequacy of Edelson’s reply.

Readers may also care to read Kev’s response to Edelson, Stephen M Edelson gets it wrong, wrong, wrong…
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