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How Neurotribes made the Holocaust personal for me

14 Nov

I firmly believe that all people are my people. That I have to accept that my people were both the victims and the villains of history. I weep for my people who have suffered, and I feel shame for the actions of those who perpetrated those crimes.

I firmly believe this. Now, it’s one thing to say, “the people who suffered in the Holocaust were my people” and to feel that very real pain. But, as I found out, there is a whole different level when it really becomes personal.

And that’s what happened when I read Steve Silberman’s Neurotribes. Actually, it happened when I Steve was writing the book and shared some of his research with me.

You see, I am not Jewish. I am not Roma. I am not gay. My disability is not major. In short, I am not any of these or the other peoples targeted by the Holocaust.

I am, however, the father of a child who would never have made it through the Holocaust. And it never really struck home until Neurotribes.

Steve lays out in his book how the framework for the Holocaust was built starting with one person. A disable child. A disabled child in a time when the culture (and not just in Germany) made having a disabled child a shame for a family. A burden. Someone to be rid of.

Generally, being “rid of” meant institutionalization, although there appears to have been an unofficial euthenasia program going on in maternity wards. In 1939, one set of parents took the next step: they asked their doctor to “put to sleep” their disabled child. Years before a researcher had surveyed parents of disabled children and found that many would approve of their child’s death, but didn’t want to officially know. This step was something different. His own parents asked for his death. There was no law that would allow that, but in approving this child’s death, the legal framework was created that would grow into the murder of millions of people.

Let me pause for a moment here. I can’t read that, hear that, think about that and not see my kid’s face. Not see the look of absolute trust, of love, that I see in that face every day.

And think of betrayal. And think of the face of kids as they were taken from their families. The faces of kids as they landed in horrible places before their deaths. Faces like my own child’s face.

It’s horrible, absolutely horrible, to think about the atrocities of the Holocaust. Those who died have been and always will be my people. But, yes, this makes it more personal. Much more painful to me. I wish I were a better person and didn’t need that personal connection to feel this pain.

Steve called me at one point when he was writing his book. He read me some of the material he had found, about how children like mine were so disregarded that their own parents gave them over for death.

I went silent for a long time. Not because I was being solemn, but I literally could not speak. My child’s face. That’s all I could think of. Love. Trust. And, yes, betrayal. A look I can, thankfully, only imagine.

We will never let this happen again. Of course I believe in that. Strongly. And I weep for the fact that, yes, genocide has happened in my lifetime and, yes, my America has not acted vigorously. I have not acted vigorously. But with the story of Gerhard Kretschmar, my connection goes beyond belief. It now goes to my heart and soul. Again, I wish I were a better person and it didn’t take his story to drive this home so deeply.


by Matt Carey

Thank you to Lorna Wing, Ruth Christ Sullivan and so many more

4 Nov

Last weekend I was having lunch with my kid. Yes, we interact a great deal in these lunches but, yes, I also take some time to read. I was re-reading Steve Silberman’s book Neurotribes. There is a great deal of discussion in Neurotribes of people who changed how we understand what autism is, as well as how we (we =autistics and non autistics) relate to autistic people. Much of this comes out in one of the last chapters, where the discussion of how the film Rain Man came to be produced. Two of the many names that came up were Lorna Wing and Ruth Christ Sullivan. Both were parents of children with very high support needs. Especially in their time, the people involved in shaping the understanding of autism and autistics were largely parents.

Both Wing and Sullivan had children with high support needs. And, yet, Wing was instrumental in bringing about the understanding that autism is not just about people who were like her child. Wing brought the work of Hans Asperger from out of obscurity. None of this “not like my child” stuff. Sullivan helped found the National Society for Autistic Children (what we know today as the Autism Society of America). She was lobbied to get special education passed in the U.S..

And as I read about them, again, I was struck with, “I never wanted to be a part of advocacy. I just want to live my life with my family.” I want to quietly eat lunch with my kid and read books, and probably not autism related books.

It wasn’t until later that a few things dawned on me.

I was sitting in a restaurant, having lunch with my kid. A kid who is very, very clearly autistic. And who was being very, very obviously autistic. Something Lorna Wing and Ruth Christ Sullivan almost certainly couldn’t do. And something that is only possible now because people like them (as well as many others, including autistics) accomplished in acceptance.

Seriously, in their day I would have been asked to take my “retard” kid out of the restaurant and not come back.

I am able to sit in a restaurant because my kid attends an excellent school. I won’t go into details, but, yeah, good school = better life for all of us. And without special education laws that wouldn’t happen. And without the understanding of how to support autistics, brought about by so many that came before me, a good school wouldn’t even exist, law or no law. That school and our opportunity to send our kid there exists because of the hard work of so many people who came before me.

I’m no Lorna Wing. I’m no Ruth Christ Sullivan. I’m not one of the many autistics who have helped change the world–autistics who are “not like my kid” but who have, nonetheless, helped get my kid and me into a world where we can sit on a quiet Saturday afternoon and eat noodles. One of us being clearly autistic, and the other reading a book. And most of all, both of us welcomed.

So I’ll try to keep doing what I can to help keep progress happening.

by Matt Carey

TPGA: Black and Autistic – Is There Room at the Advocacy Table?

8 Jul

An excellent article came out on the Thinking Person’s Guide to Autism last month: Black and Autistic – Is There Room at the Advocacy Table?

This article speaks to me because it takes on two topics that are very important to me. First, the under diagnosing and under serving of racial/ethnic minorities in the U.S.. Second, the recent cynical abuse of the African American community by people who are antagonistic towards vaccines.

In Black and Autistic – Is There Room at the Advocacy Table?, Dr. Pierrette Mimi Poinsett gives her perspective. Here’s one paragraph:

As both a Black pediatrician and mother of a son with severe mental health and learning disorders, I know that vaccines prevent diseases, save lives, and do not cause autism. Many studies unequivocally show that there is no connection between vaccine components and the development of autism. Autism manifests independently of the vaccine schedule. The reality is that autism is a complex neurodevelopmental condition that likely has both genetic and environmental components – components that do not include vaccines.

The full article is brief and to the point (my discussion is longer than the original article). I encourage readers to go to TPGA and read it.

This said, let me add a few thoughts of my own.

First, we do a poor job as a society in supporting people with disabilities, but this is a much bigger issue in racial/ethnic minority communities. This is very obvious. I found this over and over as I first explored the question of whether autism was an epidemic caused by vaccines. Countering this failure by our society has been a topic of my advocacy here, on the IACC and elsewhere.

Over the years it has been extremely frustrating to watch the groups who claim vaccines-cause autism deny this under diagnosing and under serving. The fact is that almost all autism prevalence studies show a lower apparent prevalence in minorities. And this presents a problem to the groups promoting autism-as-vaccine-injury: they need to explain why would vaccines (in their view) not affect minorities as much as non minorities?

I will also point out that these vaccines-cause-autism groups seem to be conveniently ignoring their past. Consider this example, an excerpt from an Age of Autism blog article from a few years ago (The Tipping Point: Questions about Autism, History, Race and Melanin)

Two years ago, it was unknown whether African American or Hispanic children had lower rates of autism than white children. Now there’s evidence—for what it’s worth— that certain groups are less affected.

A few years ago they were claiming that the lower rates of autism identification meant that African American and Hispanic children were “less affected” by vaccines. Now, with Brian Hooker’s (retracted) re-analysis of an old CDC dataset, they are claiming the opposite. Either way, they are wrong.

Why do they twist themselves into these logical pretzels? They have to accept that autism prevalence numbers are accurate counts of autistics (they aren’t) in order to support the idea of an epidemic. If they accept the fact that we still not diagnosing all autistics, then the data that shows an epidemic is in question. African Americans and Hispanics have lower reported prevalence numbers in the CDC autism studies. So they are forced to come up with explanations for some groups being “less affected”.

Getting back to that Age of Autism article we read:

Until it unfolded that the highest rate of autism in the world might be among the Minnesota Somali (1/28 or 1/26 depending on the source), it was a vague impression within the vaccine injury community that autism was, for lack of a better expression, a “blonde disease” or even a “redhead disease”. It just seemed to many that, with some exceptions, the paler the kid, the more likely they’d be impacted.

As we now know, the autism prevalence in the Minnesota Somali community is the same as the rest of the community around them. Moving past that point, did you catch that “blond disease” comment? Yes, rather than try to solve the problem of actually helping solve the problem of under diagnosis and lack of services in minority communities, they went into full denial mode and were labeling autism as a “blonde disease”. The same writer then goes into a complex (and confused) argument about how melanin is protective against mercury poisoning.

Did I mention that these Age of Autism articles are confused? The author ties herself into logical knots trying to cover all aspects of the discussion, while considering the conspiracy possibilities of each angle. Consider this line from the article:

On the other hand, if the CDC merely underreported rates of autism among minorities as part of a cover up of lack of assistance of minority children with autism, it would be appalling but not surprising.

Such a profound lack of awareness of facts there. First off, the CDC has been clear that the racial/ethnic disparities could be due to lower identification rates. CDC tends to be conservative in their language, but this early CDC report makes it clear that the disparities could be driven by socioeconomic factors. By this year’s report, CDC are actively calling for “[t]argeted strategies are needed to increase awareness and identification of ASD in minority communities.”

And, of course, there’s that “but not surprising” comment from the Age of Autism. Because one can expect people at the CDC, people who have dedicated their lives to helping people with disabilities, to be engaging in “cover ups”. One can believe this, if one abandons logical thinking. Ironically, it’s the Age of Autism and like-minded people who have abandoned their responsibility to advocate for communities with under-diagnosed autism. Yes, AoA, this is a big example of where you show that you are fake autism advocates and will abandon our community for your own attacks on vaccines.

We can also read this rather astounding logical pretzel–if vaccines don’t affect minorities as much, then that would mean that the CDC and others are somehow less evil than expected. No really, read this:

But if that disparity in autism incidence is real, considering government health agencies’ and mainstream medicine’s history of supporting racist policies like the Federal Violence Initiatives, etc., if differences in melanin or other forms of natural resistance among certain minorities do play a protective role against vaccine toxins, then one thing would be clear: the epidemic probably wasn’t planned. That’s because these same “eugenitic” general authorities and often racially exploitative pharmaceutical corporations (deaths from Pfizer’s Trovan in Nigeria?) would probably never have deliberately culled white children over black and Hispanic in the US.

Yes, somehow in their eugenic plan to use vaccines to to eliminate racial/ethnic minorities, the CDC missed the mark and “culled” whites instead. Per the Age of Autism’s amazing logic.

All this rather than AoA actually advocating for better awareness, better access to diagnosis, better access to services in racial/ethnic communities. You know, the sorts of things the CDC and research community have been working on for some time.

But now with bad Wakefield documentaries and junk science from Brian Hooker the African American community is no longer seen as a liability to the “vaccines-cause-autism” movement.

The sudden turnaround to embrace the African American community is so very cynical and hypocritical.

I could go on as I feel very strongly about the failure of our society to serve racial/ethnic minority communities. But I see that I’ve already written more than Dr. Pierrette Mimi Poinsett did in her excellent article: Black and Autistic – Is There Room at the Advocacy Table?.


By Matt Carey

The perils of reading history backwards: John Donvan and Caren Zucker, In a Different Key: The Story of Autism, Penguin 2016

20 May

John Donvan and Caren Zucker, In a Different Key: The Story of Autism, Penguin 2016

Hard on the heels of Steve Silberman’s award winning Neurotribes comes another grand scale history of autism, at 688 pages, even exceeding the 544 pages of its predecessor. (See http://www.spiked-online.com/review_of_books/article/why-we-shouldnt-celebrate-autism/17468#.VrST-MvcuAg)

The books have much in common: both are written by journalists with an eye for story and character. Both provide comprehensive accounts of the clinical and scientific advances of the past half century, and offer sketches of key figures on both sides of the Atlantic. They cover issues of institutionalisation and de-institutionalisation, parental campaigns (challenging professionals and bureaucrats to raise awareness, provide education and social support), and controversies (over causation, diagnostic labels, treatments, interventions and ‘cures’) and the new wave of internet-facilitated activism by adult autistics.

These histories also share common weaknesses.* Apart from their inordinate length, the narratives are often poorly organised and tend to favour description over analysis – Donvan and Zucker seem particularly reluctant to make judgements on the contribution of authorities or draw conclusions in relation to controversies. For example, in their discussion of the late Ivar Lovaas, the pioneer of ‘applied behaviour analysis’, they criticise his use of ‘aversive’ punishments to reinforce changes in behaviour – though such methods were commonplace in homes throughout the Western world up to the 1980s – and they also recycle gossip about his womanising. But they fail to provide any answers to the questions about whether modern developments of these techniques are legitimate or effective in teaching children with autism.

The authors’ proclivity for retrospective moral judgements (also a feature of Silberman’s book) gets them into murkier waters in their accounts of the work of the two authorities who first advanced the label ‘autism’ in the 1940s – Leo Kanner in the USA and Hans Asperger in Austria. From a perspective that assumes a contemporary state of enlightenment, they adopt a distinctly sanctimonious posture towards the prejudices of the past, notably in relation to issues of sexuality and race, as well as diverse forms of disability and difference, where cultural attitudes have changed dramatically over recent decades. Their criticisms of both Kanner and Asperger for their accommodations to the doctrines of eugenics fail to take account of the strength of the scientific and medical consensus supporting these theories in the first half of the twentieth century. They also seem to have little sense of the mass psychosis into which Germany and Austria in general and the medical profession in particular had descended in the period of the Third Reich. (See Robert Jay Lifton, The Nazi Doctors: Medical Killing and the Psychology of Genocide, 1986 and Saskia Baron, Science and the Swastika: The Deadly Experiment; Science and the Swastika: Hitler’s Biological Soldiers, https://vimeo.com/user6162058)

Donvan and Zucker are critical of Kanner for his approval of the sterilisation of individuals with severe learning disabilities (such procedures were carried out on a larger scale in the USA than in Germany prior to the Nazi period), even though he opposed a proposal for euthanasia, made in a leading psychiatric journal, in 1942. In relation to Asperger, In A Different Key repeats allegations made by the Austrian historian Herwig Czech in a 2010 lecture, that he made excessive compromises with the Nazi Party and was complicit in the killing of children with severe disabilities in wartime Vienna. The main problem with these allegations is that they have only the status of hearsay – though it is five years since Czech’s lecture, his evidence has not yet been published in a form which allows other authorities to scrutinise his claims and decide on their authenticity. An additional problem is that the authors fail to draw out the consequences for our evaluation of Asperger’s work, and the status of his eponymous syndrome.

Donvan and Zucker begin and end their history of autism with the story of Donald Triplett, ‘Case 1’ in Kanner’s 1943 paper that launched the diagnosis of autism into the world. Now in his early eighties, Donald is still living in his family house (though his parents are long dead) in the small town of Forest, Mississippi, where he enjoys a good quality of life in a sympathetic and supportive community. It is a heart-warming story – already told by the authors in an article in The Atlantic in 2010 (and also included in Silberman’s book) – and it reflects significant progress in the understanding and acceptance of autism over the course of Donald’s lifetime. Unfortunately, such positive outcomes are far from universal, either in the USA or in Britain, where almost every day brings new stories of people with autism suffering from mental health problems and from neglect or ill-treatment in the context of grossly inadequate therapeutic and social care services. (Meng Chuan-Lai, Simon Baron-Cohen, Identifying the lost generation of adults with autistic spectrum conditions, Lancet Psychiatry 2015; 2: 1013–27.) A recent report from Scandinavia confirms dramatically higher rates of mortality, affecting individuals across the autistic spectrum, from a wide range of medical causes, epilepsy and suicide linked to mental health problems. (Tatja Hirvikoski, et al, Premature Mortality in Autistic Spectrum Disorders, British Journal of Psychiatry, 20 November 2015, DOI: 10.1192/bjp/114.160.192).

In his thoughtful and challenging survey of the politics of identity associated with diverse forms of disability, Andrew Solomon comments on the particularly ‘polarised and fragmented’ autism community. (Andrew Solomon, Far From the Tree: parents, children and the search for identity, 2012). He contrasts this with the sphere of deafness, in which ‘medicine and activism are galloping’ – whilst in autism ‘both are trudging’. Whereas, in other forms of disability, medical advances have led to a decline in prevalence and severity, in autism, prevalence has risen apparently inexorably – in the absence of any significant advance in terms of therapeutic intervention. Though Donvan and Zucker, like Silberman, have made a valuable contribution in recording the key events in the rise of autism over the past half century, this particular chronicle still awaits rigorous historical analysis.

Michael Fitzpatrick 7 February 2016

*One is an occasional inaccuracy: Nikolas Tinbergen, associated with ‘holding therapy’, was an ethologist – not an ‘ornithologist’; Andrew Wakefield did not, in his notorious 1998 Lancet paper, report ‘traces of measles virus in the intestinal tracts’ of children with autism.

 

Shannon Rosa: Don’t Use My Autistic Son as a Reason Not to Vaccinate

10 Feb

Shannon Rosa is one of the Thinking Person’s Guide to Autism team. Her son Leo is extremely cool, and is autistic. The has a great perspective on the autism/vaccine question in that she initially believed the idea.

She was interviewed by The Stir in December and that interview is well worth reading: Don’t Use My Autistic Son as a Reason Not to Vaccinate

Here is the introduction from that interview (the full interview is at The Stir)

Shannon Des Roches Rosa isn’t the sort of woman you’d expect to see on Capitol Hill, advocating for vaccines for children. After all, when Rosa’s son Leo was diagnosed with autism in 2003, the California mom swore off immunizing her kids. Her youngest child, India, was 3 by the time she was vaccinated. And yet, today, at 10 India is fully vaccinated, as is Leo and Rosa’s older daughter, Zelly.

Rosa is the mother of an autistic child who came around to the safety of vaccines. And after allowing fear to rule her life for four years, she’s become a vocal advocate for life-saving immunizations, working with the United Nations’ Shot @Life campaign, Voices for Vaccines and other organizations to spread the word about vaccine safety.

As mother of an autistic child, the editor of Thinking Person’s Guide to Autism says she feels it’s her “ethical duty” to speak out on the behalf of vaccines … and her son.

Rosa spoke to The Stir from her California home about why she vaccinates … and why she refuses to let her son be used as a fear tactic in the war against vaccines.

The rest can be found at Don’t Use My Autistic Son as a Reason Not to Vaccinate


By Matt Carey

Thinking Person’s Guide to Autism: How ASAN Helped Issy Stapleton Get Justice

18 Nov

Isabelle (Issy) Stapleton is an autistic teenager. Her mother, Kelli, was recently sentenced in the attempted murder of Isabelle. The Thinking Person’s Guide to Autism has an interview with Autistic Self Advocacy Network’s Samantha Crane on How ASAN Helped Issy Stapleton Get Justice.

Here’s the TPGA introduction to the article:

Kelli Stapleton was recently sentenced to 10 to 22 years in prison for child abuse, after attempting to kill her autistic teen daughter Issy. We spoke with lawyer Samantha Crane, who is the Autistic Self-Advocacy Network’s Director of Public Policy, about ASAN’s efforts on the Stapleton case: both in helping the prosecution send the message that disability does not justify murder, and in urging the court to ensure Issy saw the same justice as any other victim of felony child abuse.

The full interview can be read at How ASAN Helped Issy Stapleton Get Justice


By Matt Carey

Emily Willingham: winner of the 2014 John Maddox Prize for Standing up for Science

28 Oct

Emily Willingham is one of the best writers on the science and social aspects of autism. She also writes on other topics and is an accomplished researcher. Her journalism can be found at her site, EmilyWillinghamPhD.com, The Thinking Person’s Guide to Autism (the Site and the Book), DoubleXScience, Forbes, and elsewhere.

With all that in mind, it’s great to see that she’s been recognized for her work. SenseAboutScience.org has announced that she will share the 2014 John Maddox Prize for Standing up for Science:

Dr Emily Willingham and Dr David Robert Grimes are the two winners of the 2014 John Maddox Prize for Standing up for Science.

The announcement notes:

The judges awarded the prize to freelance journalist Dr Emily Willingham and early career scientist Dr David Robert Grimes for courage in promoting science and evidence on a matter of public interest, despite facing difficulty and hostility in doing so. The winners equally embody the spirit of the prize and, at this relatively early stage in their lives, have yet to receive recognition for their work bringing science and evidence to the public. Both Emily Willingham and David Grimes reflect Sir John Maddox’s passion for investigative journalism and for social engagement by young scientists.

On Emily Willingham in specific:

Emily Willingham, a US writer, has brought discussion about evidence, from school shootings to home birth, to large audiences through her writing. She has continued to reach across conflict and disputes about evidence to the people trying to make sense of them. She is facing a lawsuit for an article about the purported link between vaccines and autism.

The Prize is a joint initiative of the science journal Nature, the Kohn Foundation, and the charity Sense About Science. The late Sir John Maddox, FRS, was editor of Nature for 22 years and a founding trustee of Sense About Science.

And a statement by Michael Fitzpatrick, doctor, autism parent, writer and contributer to Left Brain/Right Brain:

Dr Michael Fitzpatrick, author MMR and Autism: What Parents Need to Know and trustee of Sense About Science, responded to the news about Emily Willingham: “She has provided a particularly valuable service in confronting specious theories attributing autism to diverse environmental agents, from milk and vaccines to endocrine disrupters and maternal antibodies. She has also exposed quack treatments for autism and challenged ill-informed reports suggesting a diagnosis of Asperger’s syndrome as an explanation of the behaviour of serial killers (pointing out that people with autism are much more likely to be victims than perpetrators of violent crime). As co-editor of the excellent Thinking Person’s Guide to Autism, she has helped to equip parents and people with autism with a critical approach to the evaluation of claims made by researchers and therapists alike.”

The full article is at SenseAboutScience.org.

by Matt Carey

The Quacks behind the Warrior Moms

13 Oct

I accept Dr Carpenter’s opinion that there is no evidence that any of these treatments were individually beneficial for M and that collectively they were intrusive and contrary to his best interests.  M’s life was increasingly dominated by the programme of treatment to the exclusion of other activities.  I find that E has implemented a programme of diet, supplements and treatments and therapies indiscriminately, with no analysis as to whether they are for M’s benefit, and on a scale that has been oppressive and contrary to his interests.  She has exercised total control of this aspect of M’s life.’

Mr Honourable Justice Baker, In the Court of Protection, Judgment, In the matter of the Mental Capacity Act 2005 and in the matter of M, 11 August 2014

Brian Deer has once again done a service to the autism community, by putting in the public domain the judgment of Mr Justice Baker in the case arising from a dispute between a local authority and the mother (E) and father (A) of a young man (M) with autism.

http://briandeer.com/solved/mother-lied-protection-news.htm

Deer’s report, published in the Sunday Times on 12 October, focuses on the judge’s scathing judgment on E, a prominent supporter of the claim by the discredited Royal Free researcher Andrew Wakefield of a link between the MMR vaccine and autism. Mr Justice Baker concluded that E had fabricated evidence of an adverse reaction to MMR in her son, invented a range of associated diagnoses, subjected her son to unnecessary tests and treatments, neglected a dental abscess and indulged in fantasy conspiracy theories.

This Court of Protection case offered a rare opportunity to ventilate in public some of the controversies that have raged in the world of autism over the past decade. In the USA, the Omnibus Autism proceedings in 2008-9 provided a public forum in which claims regarding vaccine-autism links and associated alternative treatments were exposed as scientifically baseless and clinically irresponsible.

http://www.spiked-online.com/newsite/article/6283#.VDqLgWd0yUk

Though Mr Justice Baker did not address the MMR link or alternative treatments in general, his 92 page report provides a devastating indictment of the role of a range of therapists in relation to M, some of whom appeared as witnesses. In addition to exclusion diets and supplements, M received homeopathy, cranial osteopathy, reflexology, naturopathy, light and sound therapy, auditory integration training and hyperbaric oxygen therapy. It is clear that E’s descent into irrationality and paranoia was supported and encouraged by a number of dubious authorities and therapists, with damaging consequences for her son and her family.

Three therapists gave evidence in support of E’s treatment of her son. Shelley Birkett-Eyles, an occupational therapist working in a private clinic, was accepted by Mr Justice Baker as a ‘responsible practitioner’, though he noted that her reliability was challenged by Dr Peter Carpenter, a consultant psychiatrist with a special interest in learning disability, the expert witness called by the local authority.

Dr Peter Julu describes himself as ‘autonomic neurophysiologist’ (based at the private Breakspear Clinic), though Mr Justice Baker questioned whether this was a legitimate speciality and noted that his diagnosis of ‘neurodevelopmental dysautonomia’ was disputed by Dr Carpenter, who also challenged the reliability of his assessments and treatments, particularly his recommendation of hyperbaric oxygen therapy.

Ms Juliet Hayward, a nutritional therapist, was censured for giving ‘advice well beyond her expertise’, in endorsing a diagnosis of Lyme Disease and in prescribing a dietary protocol without taking an adequate medical history. Mr Justice Baker concluded that he ‘was left with a profound anxiety about Ms Haywood’s influence on E and her role in the treatment that M has received.’

Mr Justice Baker was particularly concerned that none of these three had received training in issues of ‘mental capacity’ as codified in the 2005 Mental Capacity Act. He observed that ‘it was clear from their evidence that none of them had given proper consideration to the question whether M had capacity to consent to their assessments or the treatment they were prescribing’.

In addition to these therapists, E called as expert witnesses two veterans of the Wakefield anti-MMR campaign: Dr Ken Aitken, a clinical psychologist formerly associated with the (now defunct) Autism Treatment Trust providing alternative treatments in Edinburgh; and Mr Paul Shattock, a retired pharmacy lecturer from Sunderland, a long-standing promoter of exclusion diets and unorthodox biomedical therapies.

http://www.spiked-online.com/newsite/article/5992#.VDqNsWd0yUk

By contrast with other expert witnesses (including Dr Peter Carpenter, Dr Alison Beck, Professor Robin Williamson, Dr Gwyn Adshead, Mr Keith McKinstrie), whom Mr Justice  Baker found to be ‘wholly reliable and professional’, he expressed considerable reservations about Aitken and Shattock:

‘I was concerned at times as to their qualifications to opine on some of the matters about which they gave evidence.’

In his conclusion, Mr Justice Baker categorically rejected the approach advocated by Aitken and Shattock in relation to M:

‘I stress, again, that I am not making any definitive findings on the efficacy of alternative treatments generally.  That is not the subject of these proceedings, which are about M.  I do, however, find that: (1) there is no reliable evidence that the alternative treatments given to M have had any positive impact on people with autism generally or M in particular and (2) the approach to prescribing alternative treatments to and assessing the impact of such treatments on people with autism in general and M in particular has lacked the rigor and responsibility usually associated with conventional medicine.’

Mr Justice Baker repudiated ‘the fallacy’ of E’s belief that there are two parallel approaches to the diagnosis and treatment of autism, each of which is equally valid:

‘The evidence in this hearing has demonstrated clearly that there is one approach – the clinical approach advocated by Dr Carpenter – that is methodical, rigorous and valid, and other approaches advocated by a number of other practitioners, for which there is no evidence of any positive impact and which (in this case at least) have been followed with insufficient rigor.  Whilst each treatment may be harmless, they may, if imposed collectively and indiscriminately, be unduly restrictive and contrary to the patient’s interests.  These disadvantages are compounded when, as in several instances in this case, insufficient consideration is given by the practitioners to the question of whether a mentally-incapacitated patient has consented to or wishes to have the treatment.’

Given his characterisation of E’s performance in court as controlling, manipulative, duplicitous and obstructive it was perhaps not surprising that Mr Justice Baker expressed some sympathy for the long-suffering family GP, Dr W. This ‘older-style family GP’ had been ‘tolerant and sympathetic’ and had maintained a good relationship with the family ‘until he went into the witness box’, when it became clear to E and her husband that, though Dr W had been attentive to the family needs and had responded to her requests to arrange investigations that he did not consider clinically indicated, he did not endorse her wilder theories and diagnoses. Though the parents later expressed ‘disillusionment’ with Dr W, Mr Justice Baker found his evidence ‘responsible, truthful and humane’.

Michael Fitzpatrick

13 October 2014

Michael Fitzpatrick has an autistic son close in age to M; he is a doctor, former GP and the author of MMR and Autism: What Parents Need to Know (2004) and Defeating Autism: A Damaging Delusion (2009)

The inhumanity of shamanic healing

26 Jun

The inhumanity of shamanic healing

‘Laurens van der Post meets Crocodile Dundee’ – Michael Fitzpatrick on Rupert Isaacson and his Horse Boy Method, the latest miracle healing programme for autism.

Rupert Isaacson, The Horse Boy: A Father’s Miraculous Journey to Heal His Son, Penguin 2009.

Michel Orion Scott (director), Rupert Isaacson (producer), The Horse Boy, DVD, 2010.

Rupert Isaacson, The Long Ride Home: The Extraordinary Journey of Healing that Changed a Child’s Life, Penguin 2014.

It was a shock to sit in a fashionable North London bar with an audience watching – without evident protest – a film scene in which the mother of a boy with autism ritually cleanses her genital area with ‘holy vodkha’ on the instruction of a shaman in deepest Mongolia. It is even more shocking to watch as six-year-old Rowan is subjected to what a sympathetic journalist who accompanied the family on their trip to Mongolia describes as ‘what looks to an outsider like child abuse’ (Tim Rayment, ‘The quest for a miracle cure’, Sunday Times 9 September 2007). Rowan is ‘whipped by a shaman – an intermediary between the natural and spirit worlds – and force-fed milk, then held under a noisy drum.’ He undergoes a dramatic behavioural regression: ‘He loses his language and starts to babble. He screams uncontrollably at the sound of a cow, assaults a little Mongolian girl, and bites his father. Getting the distressed child to the ‘sacred waters’- the ‘brain spring’ – means wrestling him there.’ (The film shows only a discreetly-edited version of these events, focusing on the whipping received by Rowan’s parents, film-maker and author Rupert Isaacson and psychologist Kristin Neff, though there is a more detailed account in Isaacson’s books).

When, in the Q&A following the film, I ventured to agree with Tim Rayment’s assessment that this did indeed ‘look like child abuse’, Isaacson responded angrily. He claimed that as a father he had merely followed his son’s lead – and urged other parents of children with autism that they should do the same. But – and this is one of several evident contradictions in Isaacson’s approach – it is clear that, though his son may have shown a spontaneous interest in horses, the initiative to subject Rowan to shamanic healing came entirely from his father.

Isaacson’s latest book records how, since the trip to Mongolia, he has subsequently taken Rowan through similar rituals with shamans in remote regions of Namibia, Australia and New Mexico. He has also established a riding school at his ranch in Texas, offering the ‘Horse Boy Method’ for children with autism, claiming that this achieves ‘miraculous’ healing results, perhaps not ‘a cure’, but dramatic improvement in symptoms. Here is another contradiction. On the one hand, Isaacson believes that autism is ‘not a problem to be fixed’ but is ‘a wondrous way of being’; on the other hand, he presents it as the result of demonic possession, perhaps a curse from his enemies (made during his earlier work as a human rights activist in Africa), or the malign influence of ancestors (perhaps Kristin’s mentally ill grandmother – hence the vodkha douche). For Isaacson, autism is a state of superior enlightenment and special gifts, but it is also a manifestation of ‘black energy’ – evil spirits that require exorcism.

Rupert Isaacson emerges as a father deeply committed to his son, but struggling to cope with the challenges of autism. He is particularly troubled by the difficulties in toilet-training Rowan, by his recurrent tantrums and by his social disengagement. He is unsparing in his account of the day-to-day difficulties of family life with an autistic child (Rowan is now 12) and the strains this imposes on all the family. But though he asks himself some good questions, he lacks the insight to come up with the obvious answers. Thus – ‘how could I be sure this was not all just New Age nonsense on my part?’, ‘Was I a complete fool for doing this – just on some kind of ego trip, and not doing this for Rowan at all?’ and (my favourite, his reflection on the demand from the Chairman of the Shaman’s Association of Mongolia for $125 each for the services of nine shamans) ‘Had I fallen into a nest of charlatans?’ As another hapless father might put it, ‘D’oh!’

As the father of an autistic son, I have no doubt that horse-riding can be a highly enjoyable and beneficial activity for people with autism. It combines physical exertion in the outdoors and interaction with both horses and people in a way that can enhance mood, improve behaviour, encourage sociability. Though we have never succeeded in getting our son on a horse (he refuses to wear any sort of hard hat), we have, like many parents, found much benefit from cycling (with an improvised saddle in a similar position to that used by the Horse Boy) and from trampolining. These activities are considerably cheaper and more accessible for most families than horse-riding – and they do not require any specialist training or expertise. I cannot see any advantage in dignifying these simple activities as ‘bicycle or trampoline therapy’ or any justification for making extravagant claims for their ‘miraculous’ healing powers.

While Isaacson’s claims for horsey-healing are fanciful, his promotion of shamanic exorcism is more worrying. He returns to primitive notions that developmental disorders are the result of evil spirits, the responsibility of malign forces or dead ancestors – or even of parents who must subject themselves to rituals of purification and mortification. Most of the rituals he describes are the familiar theatrical displays of scary masks, trance dancing, chanting and drumming, laying on hands, sucking bones and spitting out fluids. But there can be no justification for subjecting an autistic child to the sort of inhuman and degrading treatment described in his account. Nor can this ill-treatment be justified by the claims that Isaacson makes in relation to Rowan – that these rituals were followed by improvement in his toileting, his tantrums and his sociability. My son made similar improvements as he got older, without exposure to horses or shamans, as have many autistic children.

In his promotion of the cult of the primitive, Isaacson combines elements of Laurens van der Post and Crocodile Dundee. But, as the libertarian anarchist Murray Bookchin observes, this sort of retreat from into mysticism ‘is no trivial matter’: ‘It took thousands of years for humanity to begin to shake off the accumulated “intuitions” of shamans, priests, monarchs, warriors, patriarchs, dictators and the like – all of whom claimed immense privileges for themselves and inflicted terrible horrors on their inferiors on the basis of their “intuited”wisdom”.’ (Murray Bookchin, Re-enchanting Humanity: A Defence of the Human Spirit Against Anti-Humanism, Misanthropy, Mysticism and Primitivism, Cassell, 1995, p98.)

The warm applause for the Horse Boy film in North London reflects the enthusiastic reception received by Isaacson in the British press, where he has won something of a fan club: ‘With his long blond hair, biker jacket and distressed jeans [Isaacson] looks like a surf dude’ (Liz Hunt, Daily Telegraph, 6 March 2009) ‘With his flowing blond locks, [Isaacson] looks like a veteran of a 1980s rock band’ (Jessie Hewitson, The Times, 2 December 2012).

This reminded me of ‘a handsome, glossy-haired, charismatic hero to families of autistic children in this country and America’ (Justine Picardie, Telegraph Magazine, 8 June 2002) – a description of Andrew Wakefield, the former Royal Free gastroenterology researcher whose fraudulent research claiming a link between the MMR vaccine and autism did so much harm a decade ago. (It is scarcely surprising to discover that Isaacson endorses Wakefield – now a neighbour in Austin, Texas since he was struck off the medical register in the UK.)

Back in 2002, Picardie suggested that Russell Crowe could play Wakefield in a movie version of the MMR story; in the event Wakefield fans had to settle for Hugh Bonneville in the 2003 Channel 5 drama Hear the Silence. Now that Isaacson is planning a Hollywood remake of his film, he favours Robert Downie Jnr to play himself in the starring role. Given the popularity in the American cinema of sentimental voyeurism in relation to autism and cosmopolitan condescension in relation to aboriginal societies, the film seems destined for the Oscars. The only losers will be people with autism who will continue to be the object of atavistic fantasies and the targets of promoters of miracle cures.

Michael Fitzpatrick is the author of MMR and Autism: What Parents Need To Know (2004) and Defeating Autism: A Damaging Delusion (2009).

Book Review: Do you believe in magic? The science and nonsense of alternative medicine.

26 Jun

The name Paul Offit is fairly well known in the autism communities. He has spent considerable time countering the false idea that the rise in autism diagnoses seen in the past is due to an epidemic of vaccine injury. He spends most of his time as Chief of Infectious Diseases at the Children’s Hospital of Philadelphia. He is co-inventor of a vaccine which protects infants against rotavirus. Dr. Offit has written a number of books including one on autism: Autism’s False Prophets and one on the anti vaccine movements, which includes large sections on autism: Deadly Choices, How the Anti-Vaccine Movement Threatens Us All. And now he has a new book on alternative medicine: Do You Believe in Magic? The Sense and Nonsense of Alternative Medicine.

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There are two phrases which come to my mind when I hear about alternative medicine. First is a question: what do you call alternative medicine that works? Answer: medicine. The second phrase is more dark: medical fraud is a multi billion dollar business, and the bad guys know about autism.

Alternative medicine is big. Big as in a large fraction of the populations partakes in alt med in one form or another. Big as in it is big business. And, in terms of the subject of this site, big as in alt med is strongly promoted to and popular with the autism communities. Particularly the autism parent community.

As with other books by Dr. Offit, Do You Believe in Magic gives both sides of the various stories presented. He usually starts by giving the pro side, in this case the pro side of alternative medicine. For example, he presents the success stories of various alt-med practioners like chelationist Rashid Buttar and faux cancer therapist Stanislaw Burzynski. If you know the background behind a given story (say, Buttar) it can be quite jarring. You know that the claims aren’t true but you read Dr. Offit presenting them like they are. But when you get to the rebuttal it makes it very powerful.

The media has focused largely on the topic of vitamins–which does get a lot of play in the book. Dr. Offit points out how they supplement industry got a major boost from legislation which removed oversight on the industry. He also points out examples of how the claims for many supplements are either false (they don’t work) or worse (people on supplements live shorter lives than those with the same conditions who do not take supplements). As this is an autism focused site, I’ll point out the two chapters which focus on autism. The chapters largely center around various personalities and for autism the chapter focuses on Jenny McCarthy–the “pied piper of autism”. The chapter goes into detail–as in three page–listing the various theories of what causes autism (heavy metals, vaccines, misaligned spines, etc.) and the various therapies which are purported cures. Three pages. It’s amazing to see it laid out like that–showing that the alt-med community doesn’t have a real idea of what causes autism. Instead, they have dozens of ideas, sometimes contradictory, sometimes disproved, sometimes just without scientific merit. The second chapter with an autism focus is that on Rashid Buttar. He is a chelationist who includes autism as one of the many conditions he “treats”. He also came to fame recently as the doctor (recommended by Jenny McCarthy) chosen to treat Desiree Jennings, whose story of faux vaccine injury became a YouTube phenomenon.

In case you don’t recall him, here is Rashid Buttar’s IV chelation suite for children, complete with Disney characters painted on the walls.

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Yes, there is room for 10 kids to receive IV chelation at the same time. Which is a small example of how this is big business. Dr. Offit makes the point even more clearly, with Dr. Buttar as one example. Many millions of dollars have been spent by patients on Dr. Buttar’s concoctions–some of which have been clearly shown to do nothing. Some people are getting very rich in the alt-med business. Very rich. Rashid Buttar is one. Stanislaw Burzynski is another. His cancer therapies are amazingly expensive, make no sense and are a grand example of selling false hope.

Bookstores are filled with books on alternative medicine. There are very few books which take a critical look at this industry. Do You Believe in Magic is a welcome addition. Unfortunately, it will likely never sell as well as false hope.

I recently had the opportunity to meet Dr. Offit. One question I posed to him was simply, why does he stay at a teaching hospital? Given his successes, he could do pretty much anything he wants. His answer boiled down to simply–he is doing what he wants. He has the freedom to say what he wants. On more than one occasion this has led to frivolous lawsuits, and even those haven’t shut him up. In his latest book he takes on faux medicine, practitioners who are making huge profits from it and the leglistors who facilitated the industry. One could ponder who will sue him first except that facts are laid out so clearly as to make it difficult for anyone to do so.


By Matt Carey