Did I write that? Old thoughts, new thoughts.

A while ago I wrote a book (Learning to Live with High Functioning Autism. Jessica Kingsley Publishers 1999) about autism in which I said,

“The third thing that I have noticed is how diverse the personalities of adults with Autism are. Abrasive, apologetic, sympathetic to others, self centred, shy, confident. Just like the rest of us, with strengths and weaknesses. Each personality emerges unique, often after immense struggles. And, when you read the life stories there is often very little clue in a person’s childhood about the way they will turn out.
One young woman with Autism described two children, identical in every respect. They have the same problems. They inhabit the same environment. But they react in different ways and their conditions are interpreted differently. One is labelled autistic, the other is gifted but odd. In other words, there is no point in trying to pick the winners or match services to projected outcomes. The only way to pick a winner is to back them all. “

I was quite pleased with this passage from my book when I wrote it back in 1998. Now I am not so sure. I thought I was advocating equal rights for all autistics but the justification for this was the questionable premise that this was the only way to discover all the gifted and talented autistics who would benefit society. Once we have identified the “winners” what happens to the “losers” after that?

That thought never occurred to me when I wrote the passage above. I was arguing for services for all autistic children and had not thought really about the situation for autistic adults apart from arguing that,

“any adult services that are put in place need long term planning and adult services do need to be put in place. As I mentioned earlier, parents should not be expected to assume the burden of adult care. And the more independence the adult with Autism can achieve the easier the transition that will have to be made after the parents have died.”

In retrospect this looks quite horrible: glittering prizes for the few and the “burden” of community services for the rest, apart from those who will need even more burdensome insitutional care. That was not my conscious intention. I was writing from a parent’s point of view, a poor put upon parent who was forced to fill the gaps in a creaking system that was failing to provide the services that I wanted to meet my agenda for my child. My agenda at that time was to teach my son how to please other people, fit in at school and stay out of trouble so he could join the priveleged few who made it through the system. It was only much later that I learned to listen to my son. As I pointed out in another book (Asperger Syndrome in Adolescence edited by Liane Holliday Willey, Jessica Kingsley Publishers 2003)

“The best advice that Mattie got was from Dave, a clinical psychologist, who asked him to think about what he wanted. Prior to this Mattie had always been encouraged “ [by me as much as any teacher or other professional] “to meet other people’s demands and expectations. Dave was the first person to give Mattie permission to put his desires before our expectations.”

So, if I am anything to go by, even well intentioned parents who think they respect autistic culture and have some understanding of autism can get it wrong. It is easy to beome entrenched in our thinking when taking up cudgels on behalf of our children. The danger is that we define our ideas in terms of what we are fighting against. But sometimes we need to reflect on and modify our thinking about what we are fighting for.

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