Action For Autism

Supporting Autistic People

A real conflict of interest.

Just as the supposed connection between thiomersal and autism has been replaced by Green Our Vaccines sloganizing about all the toxins in vaccines, so the specific reference to autism has been diluted with reference to other neurologiciacal and psychological disorders.  I often read that one in six US children has some sort of mental health or neurological problem and it is often blamed on toxins in vaccines and in the wider environment. The largest single group are those who are supposed to have ADHD, with 2.4 million  children in the USA  on medication it accounts for 5 per cent. Depression accounts for another 5 per cent; Obsessive Compulsive Disorder between 1 and 3 per cent; Autistic Spectrum 1 per cent. A more recent addition is Bipolar disorder which moved up the scale from 20,000 diagnoses in 1994 to 800,000 or 1 per cent of US Americans under 20 by 2003.

I am sure that there is a lot of double counting here. Nearly half of all children with bipolar have another diagnosis, usually ADHD. Lots of kids with autism have depression or OCD. Children with Tourettes often have ADHD or OCD.  Nevertheless there are a lot of children being diagnosed wth various neurological and psychiatric disorders and for many the treatment of choice is some form of medication.

But for Mark Geier, David Kirby and Brad Handley the broader picture is clear. Never mind the 1 in 150 with autism. They are just the tip of an iceberg. We are looking at 50 million potentially brain damaged US Americans. Something has to be done.

I think that we in the neurodiversity movement have been rightly skeptical of these figures. We understand how the prevalence for autism has been driven up by broadening the criteria, developing better screening and diagnostic tools, increasing awareness and even improving provision. “Build it and they will come come.”

Although there are problems with the abuse of medications with autistic people the big problem for many in the medical profession and for parents has been that there is no autism pill. The search for a pharmacological solution has seduced some autism researchers and led to some famous dead-ends. Frustrated parents have turned instead to alternative practitioners offering the biomedical solutions that I have criticized from the inception of this blog.

Broadly speaking autism numbers have grown in line with our understanding of autism. We have moved from a narrowly defined disorder to a spectrum. We have struggled within that spectrum to strike a balance between the concept of discrete categories of disorder and the dimensional approach which suggests that some of the differences exhibited by autistic people may be welcome additions to the diversity of human wiring. Nevertheless, developments within autism research and the debates they generate tend to take us forward.

But I detect a different process at work with those other categories and dimensions of disorder and well-being. There may not be an autism pill but there is a pill for ADHD, for OCD, for depression etc. Sometimes there are competing pills and off label pills seeking a new niche and a sales opportunity. What if the same pharmaceutical interests that the biomedical autism community revile for there role in obfuscating the question of an autism epidemic in the face of an obvious crisis for the mental health of our children [1 in 6 ferchrissakes!]  actually generated that broader crisis in order to boost drug sales?

Now, let me say that I fully support the idea of children as autonomous learners, active agents in their own development. We now recognize the inner life of the child and recognize that when things go wrong and children experience crises in their emotional and psychological development they are entitled to help and understanding. But  1 in 10 ten year old US American boys on medication for ADHD? Something is clearly wrong.

A recent report in the New York Times exposes a real conflict of interest and shows how easily scientists, convinced of their own correctness can seriously compromise, not only their own credibility, but that of colleagues working ethically in the same field.

It may just be a coincidence, but those leading the drive to diagnose and treat bipolar disorder in children are also the recipients of large and undisclosed stipends from the pharmaceutical companies that prescribe the drugs used to treat those children. The key word here is undisclosed.

Doctor Joseph Biederman,

A world-renowned Harvard child psychiatrist whose work has helped fuel an explosion in the use of powerful antipsychotic medicines in children earned at least $1.6 million in consulting fees from drug makers from 2000 to 2007 but for years did not report much of this income to university officials, according to information given Congressional investigators.

By failing to report income, the psychiatrist, Dr. Joseph Biederman, and a colleague in the psychiatry department at Harvard Medical School, Dr. Timothy E. Wilens, may have violated federal and university research rules designed to police potential conflicts of interest, according to Senator Charles E. Grassley, Republican of Iowa. Some of their research is financed by government grants.

Like Dr. Biederman, Dr. Wilens belatedly reported earning at least $1.6 million from 2000 to 2007, and another Harvard colleague, Dr. Thomas Spencer, reported earning at least $1 million after being pressed by Mr. Grassley’s investigators. But even these amended disclosures may understate the researchers’ outside income because some entries contradict payment information from drug makers, Mr. Grassley found.

It is important to remember that the failure to disclose these payments does not automatically negate the work these men have done in the field of bipolar disorder in childhood. But if their financial relationship to the pharmaceutical companies had been known in advance I am sure that their work would have been subject to much more rigorous scrutiny. I hope that it is subject to such scrutiny now and not summarily dismissed.

We in the autism community have seen what arrogance can do when a talented individual like Wakefield becomes so convinced of the correctness of his own position that he disregards the normal  conventions of science in the hope that history will vindicate him. But personal conviction can lead to self delusion without the necessary corrective of an honest accounting to your peers. And when we are talking about six figure sums from “Big Pharma” honest accounting takes on a whole new meaning.

June 8th, 2008 Posted by Mike | ethics, mental health, psychiatry, science | 4 comments

Judge Rotenberg Center - latest research

Side effects of contingent shock treatment

W.M.W.J. van Oorsouw(a) M.L. Israel(b) R.E. von Heyn(b) and P.C. Duker(a)

(a)Pluryn Werkenrode Groep (Winckelsteegh) and Radboud University, Nijmegen, The Netherlands
(b)Judge Rotenberg Center, Canton, MA, USA 

Received 20 August 2007;  accepted 29 August 2007.  Available online 22 October 2007.

Abstract

In this study, the side effects of contingent shock (CS) treatment were addressed with a group of nine individuals, who showed severe forms of self-injurious behavior (SIB) and aggressive behavior. Side effects were assigned to one of the following four behavior categories; (a) positive verbal and nonverbal utterances, (b) negative verbal and nonverbal utterances, (c) socially appropriate behaviors, and (d) time off work. When treatment was compared to baseline measures, results showed that with all behavior categories, individuals either significantly improved, or did not show any change. Negative side effects failed to be found in this study.

Research in Development Disabilities is a respectable journal with a well respected editor, Professor Johnny L. Matson. Professor Matson also edits Research in Autistic Spectrum Disorders. So I was surprised to see this abstract. I had assumed that Matthew Israel and the Judge Rotenberg Center were beyond the bounds of acceptable practise in  psychiatry.  Perhaps their reputation has not reached the  Netherlands. Just to make sure I have emailed the lead author.

Dear Sir,

I am a special education teacher in the UK and the parent of an autistic son. I also campaign for rights and services for autistic people and maintain the blog Action for Autism <http://mikestanton.wordpress.com>I was surprised to read of the involvement of the Judge Rotenberg Center in your research, “The side effects of contingent shock treatment.” Are you aware that the JRC is the subject of considerable controversy because of its systematic use of electric shock? See for example this report by the New York State Education Department http://boston.com/news/daily/15/school_report.pdf and this open letter to the American Psychological Association http://canadiansovereignty.wordpress.com/2007/11/01/an-autism-and-mental-health-community-appeal/ Matthew Israel also has a strong financial interest in positive research outcomes for electric shock treatment in his role as proprietor of the JRC, all of which does not inspire confidence in him as an impartial research partner. Perhaps this explains why there were no negative side effects in your study, a truly remarkable outcome for any intervention.

But, surely Professor Matson is familiar with the controversy surrounding JRC? You would expect his journal to take a long hard look at a piece of research supporting electric shock treatment with Matthew Israel’s name on it before accepting it for publication. Yet the entire peer review process was completed in a just over a week. Received 20 August 2007;  accepted 29 August 2007″ I find that remarkable and disturbing.

November 15th, 2007 Posted by Mike | Judge Rotenberg Center, Quackery, psychiatry, science | 22 comments

Bad Science Abuses Autistics

If you have not read them already I urge you to visit Kristina Chew’s and Interverbal’s blogs where they write on an extraordinary technique employed by French psychiatrists to “treat” autism.

And if anybody is fluent in French I would be interested to know what they are saying about it on Forum Autisme My own limited grasp of the language suggests that, thankfully, a lot of French people are outraged by this “treatment” as well.

“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.

The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”

This is not quackery from some fringe movement like DAN! This is quackery from the heart of the French psychiatric establishment where Freudian-based psychoanalysis still holds sway. Before we get too smug it is as well to remember that the Tavistock Centre in the  UK is funded by the NHS to treat autism with psychoanalysis. And according to the Lancet

Delion recently gave a course on the technique at the Tavistock Clinic in London, which is part of the UK’s National Health Service. Maria Rhode, a psychotherapist at the clinic, points out that there are currently no effective treatments for autism, and that caring for such children presents a major, long-term challenge to health services.

Thank you to Michelle Dawson for this. Writing on her discussion list, The Misbehaviour of Behaviourists she also informs me that Professor Hobson is a member of the Tavistock Centre. As I understand it Hobson believes autism  results from a failure of interaction between child and caregiver that he regards as “the cradle of thought,” the essential foundation of what it means to be human. Here we are again. Autism is seen as a deficit that makes you less than human. So abuse of these children is OK in the name of science. I am sure scientists who experiment on animals have to follow stricter codes of ethical practise than those that apply to autistics and other victims of psychiatric research.

August 30th, 2007 Posted by Mike | Autism, Autism rights, Quackery in Autism, ethics, psychiatry | 10 comments

Who is to blame for our son’s death?

http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2007/07/30/hasper130.xml&page=1

This story is so sad and so avoidable. My son is not so different from Tim Whattler. He is doing OK at the moment.  But this was not always the case. We are not so different from Tim’s parents. We fought similar battles on our son’s behalf. Often we lost. We couldn’t understand it either.

We are lucky. Our son has survived. But it should not be about luck. Tim’s death is a waste; such a loss. It is not a tragedy. It is a crime, though I doubt there will ever be a guilty verdict.

July 30th, 2007 Posted by Mike | Autism, aspergers, mental health, parents, psychiatry, suicide | 16 comments