One in 58 statistics are wrong.

The recent story in the Observer that headlined the one in 58 figure for autism prevalence is no longer available on the Guardian Unlimited website. When I enquired about it I received this reply.

As there is a legal issue with the article that appeared on page 1 of the Observer on 8 July, the article has been removed from the website and digital edition. Therefore, I regret that we are unable to provide you with this article.

Please accept our apologies for the inconvenience this causes, however in such circumstances we stop providing articles as soon as a legal complaint is received.

But the internet does not work like that. The article and the probable reasons for the legal complaint  have been widely blogged and numerous references to it remain online. Unfortunately, many of these internet references are uncritical endorsements of the the original assertions in the Observer that autism rates had doubled and that two members of the research team, “leading experts in their field,” believed that the MMR vaccine was partly responsible for this increase.

The Observer supported these assertions with quotes from members of the research team at Cambridge University. Unfortunately for the Observer, both the assertions and the quotes were fabricated. Hence the swift removal of the offending article from their website, once legal proceedings were invoked.

This does not matter to true believers in the vaccine induced epidemic. They will repeat the 1 in 58 figure as an article of faith. But they are preaching to the choir. What about all the journalists out there who are read by the general public? The Observer story was taken up by newspapers throughout the world. Are they going to take down their stories or issue corrections? When the issue is finally settled will the Observer run a front page story with banner headlines correcting the misinformation in their original story? Probably not. But even if they do, 1 in 58 is out there now like a virus infecting all subsequent discussions about autism prevalence.

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.

A tale of two autisms

The Sunday Times has published a thoughtful piece on autism by Mark Henderson, entitled ‘We ask ourselves, can we separate Alex and autism?’ 

Alex is 12 years old and described as being “at the less extreme end of the autistic spectrum.” This was not always the case. He regressed when he was 14 months old, losing speech and becoming so withdrawn that nursery staff thought he was deaf. Reading his mother’s description of his early years Alex’s autism is plain to see. But he had to wait til he was 5 to get a diagnosis. Julia, his mum, would welcome improvements in genetic screening if it meant that children like Alex did not have to wait so long for a diagnosis but some of her worries chime with those raised by Dr Russell that are discussed on my previous blog.

“It took an age to get Alex the help he needed,” she said. “The earlier you know, the better, and if this could help us identify autism as young as possible it would be wonderful.

“But I would not want a situation like Down’s syndrome, where you tell parents while the child’s in the womb and you have to make a decision.

“We also ask ourselves how much of Alex’s personality is Alex, and how much is the autism. Can we even separate the two?

“If you asked us could we have prevented it, we would have to think. Obviously in some ways it would be better for him, but he is happy in himself.”

Questions like these are bound to come up more often as advances in genetic research offer the prospect of earlier diagnosis and even the possibility of prevention or cure. Whether or not these possibilities ever materialize is not the point. But they are undoubtedly powerful levers for releasing the massive funds that genetic research consumes.

[NB. research costs may be massive in relation to the biological sciences. But they are still small by comparison to the costs incurred in particle physics.  The Large Hadron Collider at Cern is costing in excess of 4 thousand million USD. Michael Wigler at Cold Springs Harbor has a budget of 14 million USD for his research programme into autism.]

The hype that surrounds genetic research is often encouraged by scientists eager to claim their portion of the research pie. This makes it even more important that journalists approach the topic dispassionately and are sensible to the dangers that Dr Russell raised in her article for Communication.

So it was a pity to read Mark Henderson’s latest offering in the Times, Hunting the gene that traps children in their own world which proclaims that

Parents and scientists are hoping that a new detailed analysis based on human genome will bring a big breakthrough within a year.

in the space of 4 paragraphs we get the following [emphasis added]

one of the most controversial and feared medical diagnoses of modern times

but it prompted thousands of parents to agonise over the cruel condition that seems to leave children walled off in a social and emotional world of their own, apparently beyond their love.

A disorder that was once rare has become alarmingly common,

the condition retains a brutal mystery.

This is exactly the sort of language that fuels fears about autism. It suggests that research into the prevention and cure of autism is almost an obligation. Those of us who argue for autism acceptance are accused of wishing a nightmare disorder on children. But children like Alex know happiness. They are not beyond love. They have a future. Or at least they might have a future if they are seen as people who can prosper with help and understanding, rather than the victims of a brutal mystery, at best to pitied, at worst to be feared.

All this is merely the preamble to a story about some research that is not even finished yet!

Within the next year a new study is expected to identify many of the genes that underlie autism for the first time.

I am always suspicious of claims made for a study that is still in progress. This is hype. And we have heard it many times before.  My thanks to Michelle Dawson for reminding me that in February, 2004  Thomas Insel of the NIMH said this about autism in the New York Times

“My sense is that we are close to the tipping point in this illness, and that over the next couple of years we will have, not all of the genes, but many of the genes that contribute.”

Funnily enough, we are at the same tipping point three and a half years later.

The medics tell me we are at a tipping point,” said Dame Stephanie Shirley, the millionaire computer entrepreneur and philanthropist, who is the chairman of the research charity Autism Speaks and the mother of an autistic son.

My guess is that researchers always feel as though they are on the brink of a fantastic new discovery. That is what sustains them through the painstaking daily grind at the lab bench or crunching data in front of a computer screen.  But the rest of us would rather wait for the results before we get too excited.

The article ends with another quote from Dame Shirley.

“It is quite possible that in five to ten years, we will have a real understanding of this disorder,” she said. “That’s a timescale that means today’s children may be helped.”  

I am sure that Dame Shirley is already doing a lot to help her autistic son. But genetics is the science de jour. There is a popular belief that all behaviour is the product of specific brain areas that in turn are the product of the DNA code carried in our genes. Unlock the genetic code that governs our brains and we can manage our minds. We have been here before.

Once upon a time psychoanalysis was supposed to have all the answers. It gave way to behavioural science. New brain scanning technology marked the rise of cognitive neuroscience. Genetics is currently in the ascendency. Will it prove more productive than previous paradigms or do we need a new way of trying to grasp the reality of what it means to be human, maybe one that includes autism rather than trying to eliminate it? It is significant that all the genetic research so far has tried to identify genes associated with the deficits and impairments associated with autism. Nobody to my knowledge is trying to identify the genes responsible for the autistic strengths identified by researchers like Mottron and Gernsbacher.

I do not have a crystal ball. For what it is worth, in my opinion genetic research will expand our knowledge and our understanding. But it will not lead to any sort of a cure or an end to autism. Given our current level of knowledge that is probably for the best.

Autism, Genetics and Research Ethics

The latest edition of Communication, the members magazine of the National Autistic Society contains two interesting articles on genetic research.

GENE GENIE by Professor Anthony Bailey

The first  article, by Professor Anthony Bailey of Oxford University’s Autism Research Unit, seeks to summarize recent developments in genetic research. Considering the complexity of the subject and the nature of his audience (mainly parent members of the NAS like myself with no specialist scientific training) he does a remarkable job in under a 1000 words. I  find that those experts who can write coherent and concise accounts of their work for a lay audience are usually the ones with the soundest grasp of their subject matter. Professor Bailey is no exception.

He starts by emphasizing how little we know.  This cannot be stressed too much. There have been a spate of recent reports in which journalists, and some scientists who ought to know better, have hyped up the latest genetic “breakthroughs” as harbingers of an imminent cure. But all we have so far are “candidate” genes. This is not to diminish the work of the scientists involved. Genetic research has been marked by a massive collaboration of scientific and funding institutions. It is detailed and difficult work that is only now beginning to accelerate with access to improved technology.

The most likely candidates are genes on the long arm of chromosome 7 and on chromosome 2. Again, caution is necessary. These are not genes for autism. They are potential genes for autism susceptibility. There is no single gene for autism. According to Professor Bailey, “the risk of developing autism seems to be conferred by the interaction between at least 3 or 4 genes (and possibly many more) and there were no clues as to what these genes might code for.”

When a gene is finally identified scientists will still want to learn more about what it does, when it is expressed and which other genes it interacts with. They will also try and identify the environmental factors at work. These factors need not be “known neurotoxins.” They may be neutral or even beneficial in the absence of particular genetic combinations.

[OK I realize that some of my readers may regard autism as a beneficial outcome. I look forward to your comments so that we can explore the nuances of meaning around accepting autism and welcoming autism.]

Our knowledge of genetic factors in autism leans heavily on work with families where more than one sibling is affected.  The evidence from twin studies is that autism is a highly heritable condition. So it makes sense to look at families where this is most obviously the case when seeking the genetic causes of autism. But many parents who read Professor Bailey’s article will have no obvious genetic traits of autism in their families. A new study may help to explain this. Dr Michael Wigler is a molecular geneticist at Cold Spring Harbor Laboraory in New York and he has just published a pilot study suggesting that spontaneous mutations in the parents’ sperm or egg cells may be the cause of autism in a majority of cases. Prometheus discusses this in more detail on his blog, Photon in the Darkness, and provides a link to Dr Wigler’s paper.

This all goes to show how complex the science is. It is increasingly unlikely that we will find a simple genetic cause or even a simple genetic predisposition that relies on an obvious and preventable environmental trigger for autism. I am fascinated by the science of autism but it is not going to provide any immediate answers or easy fixes. Social policy will have a greater impact on the quality of life for autistic people in the foreseeable future. This is why public attitudes to autism are so important – a point addressed in the second article.

CHOOSING THE FUTURE by Dr. Phiippa Russell

Dr Russell is a Disability Rights Commissioner and Disability Policy Advisor to the National Childen’s Bureau. She wrote about the ethical implications for genetic testing and research. She began by pointing out that alongside the potential health benefits of genetic science there is also the danger that “the primary focus of new genetic technology might not be on improving the quality of life and healthcare for vulnerable individuals. Instead, it could be lead to eugenic attitudes, which devalue disabled people and encourage discrimination in employment and other areas of life.”

There are some areas where genetic screening ought to be non-controversial. But what if it leads to discrimination in obtaining employment or essential life insurance? Dr Russell has an interesting take on this. She argues that women with a known genetic susceptibility to breast cancer may acually live longer than other women who are less likely to have regular mammograms and more likely to have their cancer detected later, when treatment options are less effective.

This kind of logic may appeal to actuaries. But most people will react negatively to the idea of disability, especially if it is a genetic disability that is  predictable and, disregarding David Hume,  therefore ought to be prevented. Dr Russell thinks that “If we accept this view, then we risk

  • reducing embryos, foetuses and, in consequence, individuals to their genetic characteristics, thereby reversing the progress made concerning human and civil rights for disabled people
  • increasing responsibility (and social exclusion) for familes with disabled children, where the disability was related to genetic predisposition
  • ignoring the multiple talents of disabled people and the real contribution which they make to family and society.”

Genetic science will advance, regardless of the ethical dilemmas it creates. People with disabilities ought to benefit from these advances. But according to Dr Russell “there are challenges in avoiding unnecessarily negative pictures of quality of life and value to the local community. “

She does not mention autism by name but goes on to say, “Many readers will be both aware and proud of their disability. It is unique to them and carries benefits as well as some challenges.”

Dr Russell ends with his quote from an unidentified disabled man.

“Disabled people themselves must join the debate about the ethics of genetic testing – you cannot close Pandora’s box once it has been opened, but the challenge is in using new information proactively to improve quality of life, not to shut down someone’s work and other opportunities because of poor understanding and low expectations. Knowledge is power – but it is essential that it is controlled by the person directly affected and used for his or her benefit, rather than used by others as a means of social exclusion.”

This is one reason why next month’s meeting on the Politics of Autism is so important. Anyone who can attend should ring up and book a place now.

According to Communication “The NAS is keen to hear the views of members and others on this complex issue … email communication@nas.org.uk with the words ‘gene ethics’ in the subject line.” The full articles in Communication are only available to NAS members.  If you want to join email membership@nas.org.uk

I am greatly encouraged by the NAS  inviting this sort of debate. I do urge people to respond.

Kerry charged over Tariq’s death

Roy Kerry has finally been charged with involuntary manslaughter, endangering the welfare of a child and reckless endangerment two years after Abubakar “Tariq” Nadama died as a result of treatment he received at Kerry’s clinic in Portersville, Pennsylvania. Kerry also faces an enquiry into his competency from the state medical authorities and is being sued by Tariq’s parents. Amazingly, on the day that charges were filed against him, Kerry was unavailable for comment because he was too busy treating patients!  

Kerry gave Tariq an IV push of disodium EDTA (Endrate). This was wrong in so many ways.

  • Endrate is a chelating agent that draws calcium out of the body and can cause heart failure.
  • It’s only indications are for the emergency treatment of hypercalcemia and for the control of ventricular arrhythmias associated with digitalis toxicity.
  • Even then it should only ever be administered as a slow infusion, never as a rapid push.
  • The label recommends a 3 per cent saline solution. Kerry used a 50 per cent solution.

Much has been made of the fact that Kerry may have inadvertently used the wrong type of EDTA. There is a “safer” version, calcium disodium EDTA (Versenate) which, according to the FDA is indicated for lead poisoning (acute and chronic) and lead encephalopathy. Even this carries dangers.

Calcium Disodium Versenate

Generic Name: edetate calcium disodium
Dosage Form: Injection, usp

WARNINGS: Calcium Disodium Versenate is capable of producing toxic effects which can be fatal. Lead encephalopathy is relatively rare in adults, but occurs more often in pediatric patients in whom it may be incipient and thus overlooked. The mortality rate in pediatric patients has been high. Patients with lead encephalopathy and cerebral edema may experience a lethal increase in intracranial pressure following, intravenous infusion; the intramuscular route is preferred for these patients. In cases where the intravenous route is necessary, avoid rapid infusion. The dosage schedule should be followed and at no time should the recommended daily dose be exceeded.

 The International Herald Tribune reports that

Kerry has argued that the boy’s symptoms improved after the first two treatments. He acknowledged there may have been a “miscommunication” about which medication to give the boy during the third treatment, but said that did not amount to gross negligence.

This suggests that maybe Kerry used the “right” version of EDTA on the first two occassions and his assistant administered the fatal dose of the “wrong EDTA in his absence. But this contradicts these statements in the official record of the Pennsylvania State Board of Medicine.

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.

All three treatments used the same medication, Endrate. By the time of the third treatment Tariq’s young body could no longer withstand the depletion of calcium from his system and he died. Would Tariq have survived if Kerry had used Versenate? Perhaps. But Versenate is indicated for lead poisoning and Tariq did not have lead poisoning according to the same official record of the Pennsylvania State Board of Medicine 

43. A physician who previously treated Tariq. recommended treatment with CaNa2EDTA as recently as June 2005.

44. Respondent obtained a “post provocative” urine sample from Tariq on July 22, 2005.

45. A “post provocative” sample is a urine sample taken after the patient has been subject to drug therapy or chelation.

46. The laboratory report of this sample was completed on July 29, 2005 and sent to Respondent.

47. This laboratory report listed Tariq’s lead level as “elevated” but not in the “very elevated” reference range.

48. It should be noted that this laboratory report has a notation in bold print that reads “Reference ranges are representative of a healthy population under non-challenge or non­provoked conditions.”

49. Tariq had a minimal elevation of his lead level.

50. The result of Tariq’s urine test also revealed a marked depletion in the iron present in Tariq’s body.

51. Controlled studies have shown a correlation between learning problems and low iron levels in children.

52. Respondent subjected Tariq to a second round of Disodium EDTA chelation on August 10, 2005.

53. In Tariq’s medical chart for the date August 10, 2005, Respondent writes, “The last IV EDTA produced 15mcg of lead level per gram of Creatinine. We really expected a higher output. Recommend repeating the IV again. Use the 1 gram of EDTA … on the next IV we’ll do another collection … IV given in the right antecubital fossa with no difficulty over about a 5-­minute span. He gets a little sleepy afterwards and then he recovers in about 5 minutes. Recheck in 2 weeks.”

54. Theresa Bicker, a medical assistant employed by Respondent, stated she administered the Disodium EDTA On the second treatment on August 10, 2005.

55. The Respondent ordered his second treatment.

56. Respondent was in attendance during the August 10, 2005 round of Disodium EDTA chelation.

57. The August 10, 2005 chelation treatment was administered by a five to ten minute IV push.

58. On August 23, 2005, a third and final round of Disodium EDTA chelation therapy was administered to Tariq.

59. Theresa Bicker administered the IV Disodium EDTA to Tariq.

60. Bicker requested Doctor Mark Lewis, D.O.) to come to the treatment room to help restrain Tariq for the IV push of Disodium EDTA.

61. Respondent was not present when Tariq received chelation on August 23, 2005.

62. Theresa Bicker administered the Disodium EDTA pursuant to Respondent’s orders.

There is no evidence for misinformation about medication here. Indeed there is strong evidence for continuity of treatment over the three sessions. Even with the evidence that Tariq’s lead levels were normal Kerry persisted in chelating the poor child.  Kerry stated in his notes that “we really expected a higher output [ ... ] Recheck in 2 weeks.” I would expect a doctor to check the levels before initiating a further round of treatment, especially as Tariq found the procedure so distressing that he had to be strapped to a papoose board and restrained by 4 adults during treatment.

FOOTNOTE

In the immediate aftermath of this tragic affair DAN! did their best to distance themselves from any involvement. Kerry was not a DAN! practitionr. His treatment was not part of the DAN! protocol. But once the fuss died own Kerry was admitted onto the list of DAN! Healthcare Practitioners. Furthermore, DAN! have never acknowledged their part in Tariq’s treatment. Tariq was referred to Kerry by DAN! practitioner Anju Usman.

 21. The July 22, 2005 entry in Tariq’s medical chart reads, “We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding 10 other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults.

She presumably is the “physician who previously treated Tariq, [and] recommended treatment with CaNa2EDTA as recently as June 2005.”  So a DAN! practitioner used all her dark arts to cure Tariq of aluminium poisoning. When that did not work she sent him to ACAM practitioner, Kerry for IV treatment with Versenate, even though Endrate is ACAM’s drug of choice.  Kerry went against Usman’s advice on three separate occasions.

Was Usman following up on her patient?

Should she have known that Kerry was using Endrate instead of Versenate?

When did Usman’s duty of care end towards Tariq?

Why isn’t she in the dock with Kerry?

Maybe we will find when this case comes to trial and Usman has to take the witness stand. 

The Politics of Autism: from Hong Kong to London

If I were part of a group of parents of autistic children organizing an international conference costing in the region of 200,000 US dollars, I would want the best speakers in the world.  My top ten, out of all the speakers I have listened to at autism conferences, in alphabetical order are Tony Attwood, Simon Baron-Cohen, Gunilla Gerland, Chris Gillberg, Judy Gould, Temple Grandin, Wendy Lawson, Gary Mesibov, Clare Sainsbury, Lorna Wing. I can think of dozens of others who, in my opinion, would grace any international conference on autism, including old friends like Larry Arnold, Luke Beardon, Leneh Molton, Dennis Debbaudt and those I only know via the internet like Michelle Dawson, Roy Grinker, Mike Fitzpatrick, Dinah Murray and Estee Klar Wolfond. Then there are all the others whom I have never heard speak, never met and never swapped emails with, like Eric Fombonne and Donna Williams.

So who have the Autism Parent Network lined up for the Asian Autism Conference in Hong Kong this September? Here is the official list with their authorized biographies. There is not one internationally acclaimed authority on autism. And they have also studiously ignored the local talent. The authors of this paper and this paper who all found no connection between mercury and autism have not been invited to speak. But there are plenty of snake oil salesmen, faith healers, exorcists and nutty professors who still cling to the mercury hypothesis.

Dr Ken Bock

Dr Ken Bock received his medical degree with honors from the University of Rochester. He is an experienced DAN clinician, whose expertise lies in bringing a comprehensive integrative medicine approach to complex medical problems. Utilizing this patient-centered approach he has helped thousands of children on the road to recovery. In this lecture he will explain why the gut and diet are the first step on this road to recovery.

Dr Jeff Bradstreet

Dr. Bradstreet is the founder of the International Child Development Resource Center in Florida. He is an Adjunct Professor of Neurosciences at Stetson University, Florida and the Southwest College of Naturopathic Medicine, Phoenix, Arizona. Dr. Bradstreet serves as an active collaborator on research projects at numerous medical schools. His interests in autism include metal detoxification, hyperbarics and immunological management of gastrointestinal problems. Dr Bradstreet will review the favorable clinical observations and research outcomes regarding the use of Hyperbaric Oxygen in autism spectrum disorders and outline common protocols.

Dr Stephanie Cave

The years between 1991 and 2002 will probably go down in history as the most controversial for the vaccine program. Many children were given vaccines containing toxic amounts of ethyl mercury and aluminum, as well as live viral contaminants. Dr. Cave will discuss the impact that this has had on the pediatric population, and will give some information about the numerous new vaccines that are being recommended. She will explain how important it is to get vaccinated, but safely.

Dr Doreen Granpeesheh

Dr. Granpeesheh founded The Center for Autism and Related Disorders and through its 17 offices worldwide, she has provided diagnosis, assessment and behavioral treatment for over 5,000 children with autism and related disorders.

Dr Martha Herbert

Dr Martha Herbert is a Pediatric Neurologist at Massachusetts General Hospital (Harvard Medical School) and is on the faculty of Harvard Medical School. She specializes in children with learning and developmental disorders. In this lecture she discusses the growing body of research demonstrating biomedical problems like inflammation and oxidative stress in Autism which suggests that the brain may not be the prime target but rather caught in the crossfire of system-wide abnormalities whose treatment can lead to improved brain function

Dr Andrew Levinson

Dr. Levinson is an Advanced DAN!R Practitioner and has been working with children on the spectrum and their parents since 2000. He is an orthomolecular psychiatrist, a yoga master and the founder of Vitality Health & Wellness, a center committed to reversing the symptoms of Autism and related disorders and the AMRIT Foundation, a non-profit organization that raises monies to help families seeking biomedical interventions.

Dr Liz Mumper

Dr. Mumper is a general pediatrician who treats children with autism spectrum disorders and attention deficits and conducts clinical research in her Virginia practice, Advocates for Children. She is Medical Director of the Clinicians Training for Defeat Autism Now! and co-chair of the DAN! Advisory Board.

Dr James Neubrander

Dr Neubrander is board-certified in Environmental Medicine with special interests in heavy metals and folate/B12 chemistry. He has pioneered the use of Vitamin Methyl B12 in the treatment of Autism and evaluated over 75,000 injections of Methyl B12. It is his opinion that there are certain factors that must be in place, or avoided, for clinicians and parents to realize optimal benefits.

Dr James Partington

Director of the Star School in California on Applied Behavioural Analysis (ABA), an important part of the overall treatment of ASD

Dr David Quiq

Dr. Quig received his PhD in Nutritional Biochemistry from the University of Illinois. He is currently Vice President, Scientific Support for Doctor’s Data, and has recently co-authored and facilitated several studies pertaining to toxic and essential elements in children with autism and learning/behavioral disorders.

Mr Stephen Shore

Mr Stephen Shore was diagnosed to have autism at young age. He obtained a Special Education degree from the Boston University. He actively participates in work relating to the education, social aspects, employment and rights of autistic persons. Mr Shore will be receiving his PhD in Special Education in September

I have no idea what Stephen Shore is doing in such company, nor why he, Temple Grandin, Valerie Paradiz and her son Elijah Wapner appeared at the recent

US Autism & Asperger Association Conference

Treating Autism as a Medical Disorder;
Bringing Biomedical Treatments and Behavioral & Developmental Therapies Together

Temple is probably the most famous autistic person in the world. When autistic people and their advocates appear at conferences like this they are not providing a countervailing view. They are giving tacit approval and validation to the quack remedies being espoused by their fellow speakers. who ask “If we are so off the wall why is Temple happy to share a platform with us?” Why indeed.

Meanwhile, a much less spectacular, but probably more important meeting is scheduled to be held in London next month. it features two of my friends, Larry Arnold and Dinah Murray.

 

THE POLITICS

OF AUTISM

7 pm September 2007

@ City Hall,

off Tower Bridge, London SE1 

SPEAKERS

Dinah Murray (University of Birmingham)

Larry Arnold (Member, NAS Board of Trustees)

David Morris (Disability advisor, Mayor of London) 

All speakers  currently provisional 

To register for the meeting please phone/ text 07875838968 or 020 79835773 or email david.morris@london.gov.uk or rocobley@hotmail.com. 

Owing to circumstances beyond our control we cannot guarantee a personal response to any or all enquiries, but all requests for registration will be added to the attendance list. 

VERY IMPORTANT NOTICE

Anyone wishing to attend this meeting MUST register in advance. No registration = No Admission.

‘It is not a disease, it is a way of life’

guardian-story.jpg 

This article is in today’s Guardian. guardian-story.jpgguardian-story.jpgguardian-story.jpg

It provides a useful introduction to the positions of some of the supporters of autism acceptance, including myself and fellow bloggers Kev Leitch and Larry Arnold.

The article begins:

Today, an event run by and for autistic people kicks off in Somerset, the latest act of a burgeoning autism rights movement. Emine Saner reports on the campaign to celebrate difference, rather than cure it.

It contains some really good insights from the people she interviewed. For example, Gareth Nelson (pictured above) of Aspies for Freedom says:

I don’t think you should cure something that isn’t purely negative, It’s the same as black people, who seem to be more at risk of sickle cell disease than white people but you’re not going to attempt to cure ‘blackness’ to cure sickle cell.

The only unfortunate thing about the article is that it does play up the role of Aspies for Freedom (AFF) at the expense of other initiatives. I was surprised to read that:

Nelson, with his wife Amy, who also has AS, is leading the UK’s autism rights movement.

And I am not convinced that AFF has 20000 members when the discussion forum on their webite has less than 6000 members and many of those are from overseas. This is unfortunate as one of the strengths of the emergent movement for autism rights and acceptance for autistic people is that there are many voices and all are free to explore important differences as well as points of agreement. As an example, Larry Arnold and I work together within the structures of the NAS and are in broad agreement on many issues. But we differ sharply in our attitude to the role of scientific research in autism.

I would also have liked to read more about Autscape. This event is unique in Europe. It takes its inspiration from a similar event in America called Autreat. Like the AFF, Autscape began three years ago but it makes no leadership claims. Instead it aims to:

  • Serve as a haven created by autistic people. An autistic space.
  • Provide a venue where the majority of speakers will be autistic.
  • Create possibilities within the conference for autistic people to communicate and socialise with other autistic people on their own terms.
  • Educate and inform on issues arising from within the autistic community.
  • Advocacy and self-advocacy.
  • Promote acceptance of autistic people in their own environments.
  • Enhance the lives of autistic people through empowerment, advocacy, and a nice relaxing time.

But these minor criticisms should not detract from a very valuable article in which the author shows respect for autistic people and accurately reports their views.

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