The latest issue of Communication, the members magazine of the National Autistic Society is out and it includes this article by me. To read the rest of the magazine you really need to join the NAS here or here for overseas membership. and to any NAS members who have come here from the magazine article, Welcome!
In the blogosphere
Blogs are online diaries or journals. Of course the content varies enormously. But there are usually a few issues that are being widely discussed in the blogosphere. President Obama’s economic package includes extra funding for scientific research including $60 million for autism research. This is discussed by Virginia Hughes on her blog. Hughes is an accomplished science writer who often contributes articles to the Simons Foundation Blog. ”A social campaigning site in the USA, http://www.change.org/ hosts an autism blog http://autism.change.org/ The writers are veteran autism blogger and parent Kristina Chew and autistic adult Dora Raymaker.
Of course, the big news in America has been the verdict in the vaccine court that there is no connection between MMR and autism. There is very little neutral ground on this issue. Those who believe that vaccines do cause autism will find support for their views on the Age of Autism If, like me you discount any connection between vaccines and autism, you will prefer Left Brain Right Brain.
For a more dispassionate view I often turn to neuroscientist, Steve Novella’s blog. See this example for his take on a recent study of hyperbaric oxygen therapy for autism. Steve also collaborates with a number of scientists and clinicians on a blog called Science Based Medicine which often discusses autism research. Even when it is not autism specific it is often relevant as with this discussion on conflicts of interests in research.
But the real attraction of blogs is writing them. Anyone can write one and publish it on the web. You do not need any programming skills, just the ability to type and something to say. Other people can read your blog and leave comments and every time you post a new article it moves to the top of your page. So blogs are always changing to show what is uppermost in people’s minds. Some of my favourites are written by parents or people on the spectrum.
Sharon is a parent in Northern Ireland who writes about life, family, autism and home education at the Family Voyage.
Casdok’s blog is about her non-verbal adult son and their struggles to obtain decent provision in England.
For an autistic view on life one example is NAS board member Larry Arnold’s blog
And finally there is you. Most of the autism blogs are based in America. But the NAS membership is as well informed and opinionated as any autism constituency here or abroad. We do not always agree but our discussions are always invigorating. I wish that more of you would start blogging and that the NAS could find a way of linking us together like the autism hub. Perhaps the next issue of Communication could include a guide to writing on the web to help get people started. And it is not just about blogging. I am just finding my feet on Face Book and now somebody wants to follow me on Twitter!
May 29th, 2009
Posted by
Mike |
Communication, National Autistic Society |
6 comments
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…
December 1st, 2008
Posted by
Mike |
Communication, DAN!, Quackery, chelation |
one comment
The latest issue of Communication, the members magazine of the National Autistic Society contains a two page article by Dr. Mike Fitzpatrick, an edited excerpt from his forthcoming book, Defeating autism, a damaging delusion, which is due out in October. Dr Fitzpatrick’s son was diagnosed with autism in 1994. His earlier book, MMR and Autism, was a vigorous defence of the vaccine combined with a thorough reply to Andrew Wakefield and a sustained rebuke of the medical establishment whose own ham-fisted response enabled Wakefield and his supporters to dominate the media coverage.
The resulting drop in vaccination rates has allowed measles to become endemic in the United Kingdom once more. Meanwhile autism prevalence has continued to increase to the point were the NAS estimate of a prevalence rate of 1 in 112, which attracted so much criticism in the 1990s when it was first suggested, is now increasingly supported by data from epidemiological studies in the UK.
In MMR and Autism Dr Fitzpatrick briefly discusses what he calls “Alternative Autism,” (chapter 6 pp 77 -100) which roughly equates to the biomedical movement. In his latest book this alternative autism takes centre stage. I detected at least four themes in the excerpt in Comunication.
- These alternative therapies do not work.
- The science behind them is flawed.
- Some of these treatments are potentially dangerous.
- The real damage is in the way that the quest to “defeat autism” demonizes autism, and by extension, people with autism are similarly demonized.
I do not think that Dr Fitzpatrick is a recruit to the ranks of Neurodiversity just yet. But in the absence of the science based medical interventions to which he aspires, he is clear that
The most damaging aspect of the crusade to ‘defeat autism’ is the attitude it expresses towards children with autism, indeed towards people with autism more broadly. Parents who share the unorthodox biomedical outlook sometimes project a negative view of autism as a destructive disease process. They can portray their children as being ill, listing their physical symptoms in the most graphic terms to illustrate the extent of their disease and disability. Parents often describe their own predicament in terms of grief and loss and as one of unremitting battle against the corrosive impact of autism on their child, their marriage and their wider family. This implicitly disparages and dehumanizes people with autism. It is not surprising that such a negative attitude towards autism is sometimes expressed in a negative attitude towards the autistic child, who is depicted in metaphors of toxicity and disease. (Communication:Autumn 2008 p15)
I fully expect a number of parents to be outraged by this. They will take it to mean that Dr Fitzpatrick is suggesting they do not love their children. I take it to mean that, for some parents who adopt the unorthodox biomedical outlook, their love will be measured by the lengths they are willing to go to in order to provide these biomedical treatments. I have seen this expressed as “Love the child. Hate the autism.” And your love for your child is often presented as a function of how much you are willing to sacrifice in order to express your hate for autism.
Dr Fitzpatrick offers a more positive alternative.
My aim is to encourage parents to emphasise the positive in relation to their autistic children, to pursue interventions for which there is good evidence of benefit (and some guarantee of safety) and to avoid the diversions and dead ends offered by the perspective of ‘defeating autism.’ (Communication:Autumn 2008 p15)
This reminds me of another article in Communication by Rita Jordan last winter which argues for a distinction between autistic spectrum disorder and autistic spectrum condition. Professor Jordan’s argument is that if we use the term autistic spectrum for both the condition and the disorder, in the first case we should be arguing for accommodations to take account of a recognised difference, while in the second case we have a disorder that requires interventions. In reality most people on the autistic spectrum probably require both accommodations and interventions. The balance will doubtless change during their lifespan. Professor Jordan asks
“So what would this mean for diagnosis? It would still be important to diagnose the disordered group and this could still be a medical category, but based not on differences from the norm (typical) but on the basis of disruption of development and functioning. Those who just have a different processing style would still need a way of having this identified to enable autism-friendly environments and approaches and to put them (and their parents) in touch with similar others. But this need not be a medical ‘diagnosis’ but a psychological assessment. Both groups need to have their common humanity respected and so, even with the best intentions, we should avoid characterising non-typical functioning children as ‘non-human.’
‘Defeating autism’ would then seem absurd: no-one would want to reduce the diversity of human nature and so deny the contribution of so many unique individuals.” (Communication: Winter 2007 p12)
Dr Fitzpatrick and Professor Jordan are tackling this question from different perspectives and their positions are quite different. But in contrast to the “unorthodox biomedical outlook” I can find common ground with both their positions and can envisage a time when we all three might be in broad agreement. I see no such prospect with proponents of the “unorthodox biomedical outlook.”
That seems the most important point to me. Some of us want to know and others think they know already. I would like to think that Dr Fitzpatrick, Professor Jordan and myself are all open to persuasion. And part of that openness has to include the possibility that we are wrong and the biomedders are right. I see little evidence to suggest a similar attitude in the biomed camp.
August 29th, 2008
Posted by
Mike |
Communication, DAN!, Uncategorized, biomedical interventions, science |
17 comments
Thoughtful Debate
The latest issue of Communication, the quarterly members magazine of the National Autistic Society continues to provide provocative and thoughtful contributions to the debates that feature so often in the autism movement.
We have Pat Howlin on the question of whether we need to differentiate between the condition of being autistic, which requires respect and understanding, and autistic spectrum disorders which require interventions. And she argues that these are not mutually exclusive categories. Lorna Wing discusses the need for a well thought out ethical framework within which genetic research can be conducted. Given that genetic research into causes and possible cures is going to continue anyway she wants it to happen within an ethical framework that respects the human rights of autistic people.
There are also features on siblings, home education and the experience of classroom assistants supporting autistic pupils in the mainstream.
Larry Arnold writes about his experience as the first ever autistic person to be elected to the NAS board of trustees. He writes about the need for the NAS to continue “to be an organization for the entire spectrum of autism” and reminds us that “newer organizations formed under the umbrella of neurodiversity and ‘aspie freedom’ … also need to be inclusive and work to include people who are not as intellectually advanced as they are.” And , as if to underline the point, there is also a feature on challenging behaviours. These are by no means the exclusive domain of so called ‘low functioning’ autistics. But for many families they define the experience of autism and seem to mark their children as different from the higher functioning autistics whose concern for acceptance and understanding is sometimes mistaken as indifference to the real suffering that can come with autism. This takes us back to Pat Howlin’s article on reframing our attitude both to autism and to autistic people. All in all a very stimulating issue which will provide me with plenty of material for future blog posts.
This shows that a national autism charity can make a serious attempt to embrace diversity and continue to address the problems that arise across the autistic spectrum. It will not always be plain sailing. With such a diverse constituency there are bound to be times when some groups will feel neglected or misrepresented. The current “Think Differently” campaign created a small storm amongst some parents that received extensive coverage in the Independent.
Some autistic adults were also put out when the same campaign referred to the “devastating effect on individuals and families” if the right support was not forthcoming. They feel that most people will miss the subtle distinction between this and the routine references to autism as “this devastating condition” by the epidemic mongers.
Thoughtless and debasing
What is certain is that nobody could miss the subtle message of this ad campaign, because there is none. Having just watched The Golden Compass I am reminded of the Gobblers who kidnap children in order to steal their souls.
This is not the latest offerng from Safe Minds or Generation Rescue. This is the New York University Child Care Center. And they do a similar job on ADHD, Asperger Syndrome and Bulimia. Whose Planet is it Anyway? and Autism Vox have both written thoughtful blogs about this campaign. The NAS takes respect for autistic people as its starting point. It will make mistakes. But it is unlikely to stoop to the level of misinformation and abuse that is apparently acceptable to New York University.
December 7th, 2007
Posted by
Mike |
Autism, Communication, National Autistic Society, Neurodiversity, aspergers, parents |
8 comments
