Biomedical interventions in autism – a reply

The Winter 2006 edition of Communication, the quarterly magazine of the National Autistic Society contains an opinion piece, “Biomedical Interventions in Autism” by Lorene Amet. Unless otherwise indicated all quotes are from Amet’s article.

She claims that,

“A previously rare childhood developmental condition seems to have become common in ten years! This does not seem to be a matter of changing definitions, ascertainment bias, or case-finding methods. What this may tell us is that the role of environmental factors in autism is greater than previously envisaged.”

But according to a National Autistic Society leaflet, (NAS 1997)

“The best estimates of the total prevalence of autistic spectrum disorders are those based on the Camberwell and Gothenburg studies, because these focused on the whole spectrum and not just specific sub-groups.”

The Camberwell study (Wing and Gould 1979) found a prevalence of 20 in 10000 for autistic spectrum disorders amongst children with IQ less than 70. The Gothenburg study (Ehlers and Gillberg 1993) found a prevalence of 71 in 10000 for autistic spectrum disorders among school children with an IQ greater than 70. These studies were published in 1979 and 1993 respectively. So, when every newspaper and magazine report seems to include the obligatory statistic that, “1 child in 166 is now affected by autism,” we should remember that back in 1993 some of the leading autism experts in Europe were arguing that 1 in 110 children were affected then. One of their most trenchant critics, Eric Fombonne (1997) carried out his own epidemiological studies (Chakrabarti and Fombonne 2001, 2005)) which went a long way to confirming Wing and Gillberg’s position.

I fail to see the point of Amet’s remark “the explosion of autism diagnosis throughout the developed world continues to throw an uncomfortable light on the traditionalists within the autism community,” when, in fact, the explosion only serves to confirm what the traditionalists established during the 1990s, that when autism is understood as a broad spectrum disorder it is more prevalent than was suggested by previous studies that focused on the narrow portion of that spectrum first described by Kanner (1943).

Whether there has also been an increase in actual numbers alongside the increase in diagnosis is unknown. Fombonne (2003) argues that the few incidence studies we have are inadequate to the task. He also points to the extreme weakness of the evidence in support of a new environmental influence that might explain any secular incidence in autism in recent years. Amet is equally tentative about possible causes.

“32 reports … suggest that it [heavy metal toxicity] could be implicated.” There is a “possible association with autism” for “diet and food sensitivity; profound vitamin, minerals and fatty acid deficiencies; some abnormalities in purine levels and essential amino acid levels; as well as some cases with hormonal or cholesterol metabolism abnormalities.”

The one study she cites goes to show how tentative those links are. The Vargas paper (2005) is inaccurately reported as a study of “11 post-mortem brain tissues of children with autism.” These ‘children’ ranged in age from 5 to 44 years. If there is active neuroinflammation in subjects born in the 1960s it is unlikely that a recent, epidemic inducing toxin is responsible. And, far from proposing a “key pathological role in autism” as suggested by Amet, senior author, Carlos A. Pardo-Villamizar cautiously points out in a press release (Science Blog 2004) that, “it is not yet clear whether [the immune activation] is destructive or beneficial or both.” On the question of treatments he says that “much more research would be needed to establish the validity of this approach.”

Amet is not so tentative about possible treatments. Apparently, ‘could be’ and “possible association” provide sufficient proof to justify the treatment protocol on offer at her Edinburgh clinic. She agrees “that there is at present insufficient published evidence for the efficacy of the biomedical approach beyond anecdotal reports.” In plain English that means that there is no published evidence apart from anecdotal reports.

Amet believes it would be unethical to carry out proper research before experimenting on children because,

the biomedical treatments that some feel have been shown to lead to recoveries are complex, comprised of several inter-dependent parameters, and carried out over a long period of time, usually for a minimum of two years.

So studies on mice, monkeys and in vitro are good enough to suggest treatments but those treatments cannot be subject to clinical trials. This is quackery pure and simple. Amet argues that,

“It is only through thorough examination and biomedical testing that the individual child’s symptoms can be understood and treatments tailored accordingly.”

Autism is presently only diagnosable on the basis of observable behaviours. Amet would like to be able to diagnose on the basis of biomedical indicators. But here she suggests that it is already possible to match autistic symptoms to biological markers.

Once these biomedical problems are identified they will be treated with dietary and pharmaceutical interventions that will also cure the autistic symptoms. Biomedical interventions are often used in conjunction with applied behavioural analysis on the premise that the child needs to be re-educated in what it is to be normal while they are being recovered from their autism.

Quite aside from the arrogance that presumes such knowledge of the biochemical predictors of behaviour and competence to manipulate them successfully, there is the complete denial of any autonomy for the child in determining who they are. The child is a tabula rasa with no opportunity for influencing the outcome of their own development and education.

While every child is different,

“children with autism have a set of characteristic clinical complaints. And these are very well-substantiated in the current peer-reviewed medical and scientific literature.”

It would help if Amet could provide a list of these “characteristic clinical complaints” and some reference to the relevant literature. In contrast to Amet’s claim it is my understanding that the clinical picture in autism is heterogeneous. Common clinical characteristics have so far proved elusive. I remember David Amaral of the MIND Institute at UC Davis, speaking at the International Autism Conference held by the NAS in London 2005 showing a slide that said,

“Autism is an enormously heterogeneous disorder. It is likely to have a variety of etiologies and ultimately to be considered distinct variants or phenotypes of the same disorder (Autism type A, Autism type B etc.)

To date, research on autism has been too fragmentary to allow determination of the biomedical and behavioural characteristics that define different phenotypes of autism spectrum disorder.”(Amaral 2005)

Amet also claims that,

“The biomedical approach to autism is currently endorsed by over 500 medical doctors, throughout the world in a total of 23 countries. What these practitioners advocate is that autism is treatable. They uphold the principle that children with autism not only have the right, like any other children, to full medical investigation, but that the investigation must be comprehensive.”

Amet is wrong and she knows it. The five hundred medical doctors do not exist. She is referring to the DAN list of registered practitioners who have agreed to the DAN protocol for treating autism. Amet know that not all of these practitioners are medical doctors because she, a research scientist, is on the list. So is Ken Aitken, a psychologist and associate of Amet’s in the Autism Treatment Trust. Neither is qualified to call themselves an MD. The DAN list also includes naturopaths, homeopaths and other ‘alternative’ therapists.

Many of the DAN practitioners are medical doctors. But that is no guarantee of quality. Last year Abubakar Tariq Nadama died while being given chelation therapy. He was referred to Dr Kerry by DAN practitioner Dr Usman who recommended treatment with disodium EDTA with a dose of 50mg per kilo when the recommended dose is 40mg per kilo. Usman referred Abubakar to Kerry because “He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults.” Abubakar was five years old and autistic. His mother took him to America because she was persuaded that autism is treatable by the biomedical interventions championed by Amet.

At the time much was made of the fact that Kerry was not a DAN doctor. He is now. After he killed Abubakar, Kerry was admitted to a DAN conference, completed an eight hour intensive training programme and joined the “500 medical doctors, throughout the world” whom Amet looks to for endorsement.

Those “500 medical doctors, throughout the world” also include a Dr. Schwartz in California who is not allowed to examine boys without a chaperone because of previous misdemeanours. The Medical Board of California (2006) is currently trying to permanently revoke his licence to practise medicine after he persistently broke their injunction not to examine boys without a chaperone.

He chose to get round this problem by inventing a novel way to “uphold the principle that children with autism not only have the right, like any other children, to full medical investigation, but that the investigation must be comprehensive.” He interviews their mothers instead. And, without ever seeing the boys, orders a series of tests and prescribes treatments for them.

This is the company that Amet keeps. These are a few of the medical doctors who endorse her biomedical approach to autism. I am surprised that the NAS would publish an article that is so weak on logic, so riddled with factual errors and, above all, so ethically compromised. It is no more than a thinly veiled advertisement for her clinic, a commercial for autism treatments that are not supported by the literature rather than a serious discussion of that literature.

References

Amaral, D. (2005) A Multidisiciplinary Biomedical Approach to Autism Research: The Autism Phenome Project. Presentation to the NAS International Conference September 2005
http://www.nas.org.uk/content/1/c4/78/67/Friday_DavidAmaral6.pdf
(accessed 1/12/2006)

Amet, L. (2006)Biomedical interventions in autism. Communication 40:4 pp 10-11

Chakrabarti, S. Fombonne, E. (2001) Pervasive Developmental Disorders in Preschool Children. JAMA, June 27, 2001 – 285:24 pp 3093-3099

Chakrabarti, S. Fombonne, E. (2005) Pervasive Developmental Disorders in Preschool Children: Confirmation of High Prevalence Am J Psychiatry 2005; 162 pp 1133–1141

Ehlers, S. & Gillberg, C. (1993): The Epidemiology of Asperger syndrome. A total population study. Journal of Child Psychology and Psychiatry, 34:8 pp 1327-1350

Fombonne, E. (1997) Prevalence of autism spectrum disorder in the UK. Autism 1:2 pp 227-229

Kanner, L (1943) Autistic Disturbances of Affective Contact. Nervous Child 1943; 2: pp 217-250.

Medical Board of California (2006) Accusation and petition to revoke probation
http://publicdocs.medbd.ca.gov/pdl/Image.aspx
(accessed 1/12/2006)

NAS (1997) How many people have autistic spectrum disorders? NAS Factsheet

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=299&a=3527

(accessed 1/12/2006)

Science Blog (2004) Brain Inflammation found in autism.
http://scienceblog.com/community/older/2004/520044596shtml
(accessed 27/11/2006)

Wing L, Gould J. (1979)Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. J Autism Dev Disord. 1979: pp11-29

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10 thoughts on “Biomedical interventions in autism – a reply

  1. Thorough fisking Mr. Stanton.

    “The biomedical approach to autism is currently endorsed by over 500 medical doctors, throughout the world in a total of 23 countries.”

    You’re probably right that she’s wrong and knows it, but so what? Is an appeal to popularity and numbers supposed to mean the so-called biomedical approches have any merit? It’s hard to think that the scientific community in the U.K. would take her seriously, but then she may not be concerned about that.

    “What these practitioners advocate is that autism is treatable.”

    Advocate being the key word. They can advocate all they want, it won’t make it true in the present.

    “They uphold the principle that children with autism not only have the right, like any other children, to full medical investigation, but that the investigation must be comprehensive.”

    Wow, the intentions sound righteous, but “comprehensive” is probably easily translated to “expensive”.

    What a clown.

  2. There’s a DAN! something or other in the area where I live (the last time I checked) who was just a PhD… possibly a nutritionist, but no MD. There are several DAN! chiropractors. OK. So many aspects of “DAN!” are “do it yourself,” it’s easy to see how a PhD or naturopath might find a way to circumvent legalities and “prescribe” chelation.

    I like the case of John Green III who was selected by Dr. Hendren of the MIND Institute and others as a prime example of a good DAN! doctor. Green has or had a board order against him in Oregon because a kid he was pumping full of something via I.V. ended up in a hospital and his mom didn’t know what the boy had been infused with. Secret DAN! sauce, maybe?

    At the time of the article, “Curing Jamie Handley” This was true about the MD partner of John Green III
    “Dr. Green’s partner, Alejandro Contreras, listed on the DAN! website as an MD, is a recent immigrant and, Dr. Green says, has yet to receive his green card. According to the state board, Contreras is not licensed to practice medicine in Oregon. Contreras did not return WW’s phone call.”

    http://www.wweek.com/editorial/3149/6822/

    One of my faves, Dr. Miriam Jang, (DAN! MD) who nearly killed a three year old boy by recommending high doses of vitamin A that nearly destroyed his liver.

  3. Ms. Amet can’t even decide how and when her son became autistic. Should we expect her to worry about inaccurate information when it comes to use of biomedical interventions? I suspect she is more concerned with bringing in new customers for the clinic.

  4. Very well said Mike.
    Who receives this magazine from the NAS? Is it all members? Will your rebuttal of this woeful article be published there? I do hope so.

    I’ve been trying to decide whether to rejoin either the NAS or the local NI organisation, but I think more can be achieved with the bigger organisation.

  5. Amet’s piece is actually a rebuttal of the article I wrote last year which forms the very first entry in this blog. The next issue is due in the spring. I am sure that the NAS would appreciate a range of responses to the article. The more letters they receive the better it is for the debate.

    you have to be a member to get the magazine. But you can order individualarticles for £2 each. Details here
    http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=516

  6. This does not seem to be a matter of changing definitions, ascertainment bias, or case-finding methods.

    Amet should back up that claim with something. The only report that provides some argument to this effect has a very significant and well known flaw in reasoning. It’s not sufficient to make assertions like the above as if they were obvious without explaining how she arrives at that.

    the biomedical treatments that some feel have been shown to lead to recoveries are complex, comprised of several inter-dependent parameters, and carried out over a long period of time, usually for a minimum of two years

    This part, you’re right, smells like pseudo-science to me.

  7. Bah. This is the same nonsensical tripe wrapped up in the same nonsensical language.

    You know who else says you can’t do clinical trials on their protocol? Homeopaths.

    Exactly. No better than sugar pill hawkers.

  8. I can see that this whole paper has been written by the Phara people, who are totally against any kind of natural or homepathic therapies and it’s blatantly clear in this paper.

    Larry King had a mother whose son had autism on his show on October 7th, in the US and she showed us how biomedical intervention helped her son, who not only had autism but also had seizures. Why would she lie about something like that and her testimony on the show was real and blatantly honest.

    Your paper is not.

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