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.

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.

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.

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)

7 Responses to “The Quacks behind the Warrior Moms”

  1. Narad October 14, 2014 at 04:57 #

    Is “Hayward” actually misspelled as “Haywood” throughout the judgment? (The “credentials” match up.)

  2. lilady October 14, 2014 at 15:47 #

    Is there a takeaway lesson from this prolonged hearing over the guardianship of the young man? I think the lesson is that there are a group of “warrior moms” who have used their children’s disabilities to fulfill a need in their lives. It is not ever enough to parent a special needs child…they use that child for personal gain and notoriety. We see examples of these “warrior moms” all around us…such as the case with Jenny McCarthy who used her son to revive her moribund career as a D-list celebrity.

    The perfect example of the original “warrior mom” is Barbara Loe Fisher, who suddenly remembered a reaction which her son had following vaccination with the whole cell pertussis vaccine, after she viewed a documentary on American television:

    “….At the time, Fisher was a former PR professional who’d become a full-time housewife after she’d given birth to her son Chris four years earlier. When “Vaccine Roulette” aired, it had been more than a year since Chris had started displaying symptoms of what would eventually be diagnosed as a range of developmental disorders. I wrote about Fisher’s reaction to Thompson’s broadcast in my book:

    It wasn’t until she saw Thompson’s broadcast that the pieces fell into place. The reactions that Thompson described—convulsions, loss of affect, permanent brain damage—were, Fisher realized, identical to those experienced by her son. Suddenly, Fisher remembered in meticulous detail what had happened one day eighteen months earlier, when Chris had received the final dose of his DPT vaccine:

    ‘When we got home, Chris seemed quieter than usual. Several hours later I walked into his bedroom to find him sitting in a rocking chair staring straight ahead as if he couldn’t see me standing in the doorway. His face was white and his lips slightly blue, and when I called out his name, his eyes rolled back in his head, his head fell to his shoulder and it was like he had suddenly fallen asleep sitting up. I tried, but could not wake him. When I picked him up, he was like a dead weight and I carried him to his bed, where he stayed without moving for more than six hours, through dinnertime, until I called my Mom, who told me to immediately try to wake him, which I finally did with great difficulty. But he didn’t know where he was, could not speak coherently and couldn’t walk. I had to carry him to the bathroom and he fell asleep again in my arms and then slept for twelve more hours.’

    It’s an incredibly moving story, and one that Fisher has told to congressional panels, federal committees, and state legislatures, and at national press conferences for more than twenty-five years. In all that time, she’s almost never been questioned about the specifics of her narrative—and there are parts that, if nothing else, certainly are confounding.~ Fisher, as she told an Institute of Medicine (IOM) Immunization Safety Committee in 2001, is “the daughter of a nurse, the granddaughter of a doctor, and a former writer at a teaching hospital” who viewed herself as “an especially well-educated woman when it came to science and medicine.” How was it that her only response to finding her unresponsive son displaying symptoms associated with heart attacks, strokes, and suffocation was to carry him to bed and leave him alone for six more hours? And if Chris’s reaction to his fourth DPT shot was so severe that it transformed an ebullient boy into a sluggish shell of his former self, why had he been fine after receiving the first three doses?….”

    We, as advocates for all children and adults who are developmentally disabled, have to be willing to challenge these “warrior moms” who infantilize their children and who use their children for secondary gain.

  3. Michael Fitzpatrick October 14, 2014 at 19:13 #

    Yes, though Mr Justice Baker good on most things, he seems to have got some of his spellings wrong: both Juliet Hayward and Shelley Birkett-Eyles are misspelt.

  4. lilady October 16, 2014 at 04:49 #

    Thank you Dr. Fitzpatrick for your excellent reporting on this decision.

    I would like to pose a few questions to you about the residences where “M” was placed.

    Mr. Justice Baker mentions placements in multiple “colleges” and what appears to be “houses” nearby. Are they really similar to American “colleges” (education institutes)? Are the nearby houses where “M” resided, small group homes…or are they larger institutions?

    • Dr Mitzi Waltz October 20, 2014 at 13:06 #

      “College” in the UK means a further education placement for adults (post-16 education), not a university. There are a number of colleges catering for young adults with learning difficulties and/or autism in the UK. Many have both day and residential students. It is likely that the houses are small residential facilities, as we don’t have many large residential facilities for disabled adults here. Often these are connected to the college (sometimes they are located in the same building), for example, ESPA’s Tasker House: which I’ve visited in the past and found very decent indeed.
      I’ll leave it to Dr Fitzpatrick to provide details (if he knows them) about the specific facilities in this case.

  5. Motman October 21, 2014 at 13:26 #

    Just a quick correction. Brian Deer did not put this judgement into the public domain. The judgement was released into the public domain (subject to reporting restrictions). Brian Deer commented on this judgement on his website, advertising the information that was in the public domain to a wider audience.

    This may seem like semantics but on a site that prides itself on pointing out the way that anti-vaccine advocates often make misrepresentations it’s important to ensure we don’t over indulge those people whose views we support.

    Credit for the service’ to the Autism community’ in this case should really go to Justice Barker for his well reasoned decision making and a judgment that sets precedent that should protect others in the future.

    • Sullivan (Matt Carey) October 21, 2014 at 18:34 #

      I will bring that to the attention of Mike Fitzpatrick, who wrote the above. I would say that Mr. Deer gets credit for bringing this to the public’s eye. For publicizing it.

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