Things got a bit hectic the other day; so if this seems familiar, forgive me. On the other hand, I do believe that this material is probably more suited to this blog rather than other blogs, given the history here and how long I’ve been covering the quackery spawned by Andrew Wakefield, arguably the most famous antivaccine guru in the world.
This time around, I’m talking about a report published over the weekend by Brian Deer. Deer, as you might recall, remains the one journalist who was able to crack the facade of seeming scientific legitimacy built up by antivaccine guru Andrew Wakefield and demonstrate that (1) Wakefield’s work concluding that the MMR vaccine was associated with “autistic enterocolitis” was bought and paid for by a solicitor named Richard Barr, who represented British parents looking to sue vaccine manufacturers, to the tune of over £400,000; (2) Wakefield expected to make over £72 million a year selling a test for which Wakefield had filed a patent application in March 1995 claiming that “Crohn’s disease or ulcerative colitis may be diagnosed by detecting measles virus in bowel tissue, bowel products or body fluids”; and Wakefield’s case series published in The Lancet in 1998 was fraudulent, the equivalent of what Deer correctly characterized as “Piltdown medicine.” Ultimately, these revelations led to Wakefield’s being completely discredited to the point where The Lancet retracted his paper and even Thoughtful House, the autism quackery clinic in Austin, TX where Wakefield had a cushy, well-paid position as scientific director, had to give him the boot. Yes, Wakefield is a fraud, and it’s only a shame that it took over a decade for it to be demonstrated.
As much as I hate how it took discrediting Wakefield the man as a fraud rather than just discrediting his bogus science (which is not that difficult to do from a strictly scientific standpoint) to really begin to turn the tide against the annoying propensity of journalists to look to Wakefield or his acolytes for “equal time” and “balance” whenever stories about autism and vaccines reared their ugly heads, I can’t argue with the results. Wakefield is well and truly discredited now, so much so that, as I noted, his prominent involvement probably ruined any chance promoters of the “CDC whistleblower” scam ever had to get any traction from the mainstream press.
What is sometimes forgotten is the effect Wakefield’s message has had on parents. These are the sorts of parents who tend to congregate into groups designed to promote the idea that vaccines are dangerous and cause autism, such as the bloggers at the antivaccine crank blog Age of Autism, the equally cranky blog The Thinking Moms’ Revolution, or groups like The Canary Party. It is Wakefield’s message and the “autism biomed” quackery that it spawned that have led to unknown numbers of autistic children being subjected to the rankest form of quackery in order to “recover” them, up to and including dubious stem cell therapies and bleach enemas. These parents continue to be drawn to the charismatic Wakefield like moths to a flame, and he takes advantage of that to hit them up for cash every chance he gets as he continues to blame, without evidence, the MMR vaccine for autism.
This is the sort of parent that is the topic of Brian Deer’s story in the The Sunday Times yesterday entitled A warrior mother lost to MMR lies. (Mother warriors, remember, was the title of a book by Jenny McCarthy promoting the idea that vaccines cause autism and the biomedical quackery parents of such children use to treat autistic children.”) It is the story of a mother who became an acolyte of Andrew Wakefield and how she completely made up the link between vaccination and her child’s autism. Because of what is characterized by Deer as a “pathological conflict with his carers,” an unnamed local brought legal action against E and A to allow M to get the care he required.
Although the article is behind a paywall, there is a version of it, Wakefield ‘MMR mother’ fabricated injury story, on Brian Deer’s own website, along with a link to the 45,000 word judgment by High Court judge Mr Justice Baker that entered the public domain last week from the Court of Protection. A link to the complete text of that judgment is also available on Deer’s website. In order to protect the child’s anonymity, the parents are not named, the mother being referred to as “E,” the father as “A,” and the child as “M.” To continue that protection, given that I know many of our readers are quite knowledgeable about l’affaire Wakefield, some even considerably more so than I, I must insist that there be no speculation about the identities of E, M, or A, and no naming of them. In any case, E is what Deer has dubbed a “Wakefield mother,” Wakefield mothers being forgotten victims of the MMR scare engineered by Andrew Wakefield. The story of E is harrowing reading, and Deer is not unsympathetic:
By any reckoning, “E” is a formidable crusader. She is intelligent, articulate and outwardly confident. She has worked as a health service manager. She is a former school governor and a trained mediator. And, most of all, she is a loving parent. She champions her son “M” – who is autistic and learning-disabled – and for his first 18 years looked after him at home, generally “very well” by all accounts.
In America, she likely would be called a “mother warrior”, a name coined by Jenny McCarthy, an actress. These are women who have concluded that their child’s disorders were caused by vaccines, and will stop at almost nothing to prove “the truth”. In recent years, Britain’s “MMR scare” has been exported to the United States, and such mothers have rallied to networks of websites and conferences, even as infectious diseases have returned.
But “E” is British, a leading disciple of Andrew Wakefield, the former “MMR doctor”, who was struck off the medical register in 2010. He is the man who terrified a generation of young parents, claiming that the triple shot against measles, mumps and rubella causes autism and a novel bowel disease. As my lengthy investigations revealed, while he secretly worked for lawyers and tried to launch his own personal business ventures, he caused vaccination rates to plummet, and triggered outbreaks of measles. The British Medical Journal dubbed his research “an elaborate fraud”.
“E”, I believe, is one of the scare’s forgotten victims. I call them the “Wakefield mothers”. Here is a woman, now in her fifties, who I have met but am forbidden to name. She has appeared at public rallies and in media, with her son. She has protested to government ministers. She has denounced judges, doctors and journalists (including me). She sued a drug company that makes MMR.
It also turns out that what E relates to the authorities (and everyone else) about her child’s development of autism does not jibe with available records and evidence, to the point that the judgment finds it hard not to conclude that “E has fabricated, or at least grossly exaggerated, her account.” The entire judgment is incredibly damning, documenting numerous cases of E recounting health issues that are not supported by available documentary evidence. How did this happen? Was E lying, or is this just another example of how malleable memory is and how a mother, finding what she thinks to be a potential cure, can find her memories unconsciously altered to fit her beliefs, so that she really believes her false accounts are true? Or is it a combination? Let’s look at her story, as related by Deer, and the judgment.
The archetype versus reality
Brian Deer carefully points out how E’s story is an “archetype,” the same sort of story that he’s heard “hundreds of times” since he started investigating Wakefield and that I’ve heard as well many, many times since I first took an interest a decade ago in the antivaccine movement, Andrew Wakefield, and the pseudoscientific myth that the MMR vaccine causes autism. As Deer put it, “It was the template media and lawsuit “Mothers’ Story” that would be recited so many times, by so many mothers over the years, that a reasonable person might assume it was true.” Indeed, the most famous “mother warrior” in the US, Jenny McCarthy, tells a story that fits the archetype. When told by these “mother warriors,” the core story is always the same, although the details can vary considerably. The core story is that the child was perfectly healthy, with no indication whatsoever of neurodevelopmental issues (or, usually, anything at all wrong) until sometime after MMR vaccination. In the case of Jenny McCarthy, she claimed that soon after the shot, “boom—the soul’s gone from his eyes.” McCarthy’s story has mutated and morphed through the years and with other retellings, so much so that it is difficult to tell what really happened. Unfortunately, E’s story about M has also morphed through the years.
I’ve read the entire judgment, and one thing that leaps out is a passage at the beginning. After noting that M was born in July 1989, the chronology used by the judge indicates that “on four dates between September 1989 (when he was aged six weeks) and March 1990 (aged eight months) M received the normal range of inoculations, with no recorded reactions,” and that “6. Between July and December 1990 there were eight further visits to the GP noted in M’s medical records in which he was reported as suffering from a variety of infections. There is no record of any developmental delay in these notes.” Then:
On 12th January 1991, aged just under 18 months, M was given the measles, mumps and rubella (“MMR”) vaccination. There is no record in his GP notes of any adverse reaction. In fact, there is no report of any adverse reaction to the MMR in any record relating to M for the next nine years. From 2000 onwards, however, M’s parents, and in particular his mother, have given increasingly vivid accounts of an extreme reaction to the injection experienced by M. There are descriptions of M screaming after having the injection, followed by six hours of convulsions, screaming and projectile vomiting. It is the parents’ case that the mother told their GP that he had had a bad reaction to the MMR but was told by him that she was an over-anxious mother and must be imagining it. When E called the GP a second time and said she was calling the emergency services, she was told not to do this, but went ahead because M was going in and out of consciousness. The paramedics and the GP had arrived at the same time, at which point M’s temperature was 104. The GP had told the paramedics to leave. Before going, they had told her that this was a case of meningeal encephalitis. The GP had been verbally abusive to E. The above account, given to Dr. Beck, a psychologist instructed as an expert witness in these proceedings, is similar to that given by the mother to a variety of professionals. She also gave a detailed description of M’s reaction to the MMR in the course of her oral evidence. One note in an “auditory processing assessment report” dated 31st October 2002 records E alleging that, following the MMR, M had remained in, “A persistent vegetative state for six months.”
The judgment (Deer as well) notes multiple inconsistencies in E’s accounts of M’s health problems, which she never linked to the MMR until at least 2000, after news of Wakefield’s case series and claims about the MMR, autism, and “autistic enterocolitis” had begun well and truly circulating in the British press. Ironically, as Deer and the judgment relate, E claimed repeatedly that her son had autistic enterocolitis, even after M had been evaluated by Wakefield’s group. Why is this unusual? The reason is simple, despite the tendency of Wakefield’s group at the time to promote autistic enterocolitis as a real entity and blame it on the MMR, even his group at the Royal Free Hospital didn’t diagnose M with the condition. It’s noted that E and A “have stated that M displayed signs of a severe gut disorder from the time of the MMR vaccine for 10 years until he was assessed and diagnosed at the Royal Free gastroenterology department” even though “there is no record in the GP notes or any other contemporaneous complaint that M had suffered a gut disorder during this 10 year period.” In fact, what M had been diagnosed with was constipation. The hospital notes from 2002, for instance, list E’s diagnosis as “progressive [regressive] autism – constipation.” As High Court judge Mr. Justice Baker’s judgment states:
Throughout the hearing, E insisted that M had been given the diagnosis of autistic enterocolitis or leaky gut syndrome and alleged that some of the Royal Free medical records must be missing. I reject that assertion. I find that not even the Royal Free team, who at that time were leading the way and postulating the link between autism and a form of colitis, found any evidence in 2001 of significant gut disorder in M. In his case no diagnosis of autistic enterocolitis or leaky gut syndrome was ever made.
If even Wakefield’s group at the Royal Free Hospital didn’t diagnose M with autistic enterocolitis, that really ought to tell you something! In any case, as Deer and this judgment recount is that the mother, having discovered Wakefield’s hypothesis, changed her story. Indeed, E filed for compensation in the “class action” lawsuit three months after she obtained an appointment at the Royal Free. Before she learned of Wakefield’s MMR scare, E blamed M’s condition on this:
The first relevant concern was in May 1990, when “M” was aged 10 months. In an account taken later, his parents said that on one night they felt that he had three times “nearly stopped breathing”, turned blue, and from then had difficulties swallowing.
“A clear indication of the trauma his body experienced from this illness was from that time onwards he could not bear his head to be anything other than upright,” said an education service report of the parents’ words, filed in evidence. “If it was moved lower than his shoulders his whole body would go completely rigid. For a time he lacked control over his tongue, until we managed to teach him how to keep it in his mouth.”
This was almost eight months before “M” received MMR, which was given to him in January 1991. And there were no reports of any reactions, or anything related to the shot, in his notes for the next nine years. Meanwhile, “E”, and her husband, “A”, who worked for the fire service, cared for their son, with devotion and love, as paediatricians struggled with the boy’s emerging autism and his significant intellectual delay.
Once E had discovered the dark path of vaccine injury and autism biomed, however, she jumped in, head first, taking her son to a variety of alternative medicine practitioners, garnering a huge number of diagnoses at various times, and treating him with virtually every form of quackery you can think of to which autistic children are subjected. The sorts of health issues reported by E included loss of sensation in M’s hands and feet, seizures, meningitis, leaky gut syndrome, tumors in his gums, “chronic blood poisoning,” bilateral deafness, uncontrollable temperatures, heavy metal poisoning (of course!), a “black shadow sitting on his left sinuses,” stabbing pains in his groin, uncontrollable sneezing, adverse effects of “electromagnetic energies” (against which E wrapped “electronic items in his [M’s] bedroom in tin foil to protect him”), “black grunge oozing from every orifice,” and Lyme disease (also of course). Other diagnoses included, rheumatoid arthritis; heavy metal poisoning (based on an isolated test result when such a diagnosis turns on repeated elevated levels); and a defective blood brain barrier. It gets even worse, though.
When M reached his teenage years and started to demonstrate more difficult behaviors, E blamed his personality change on “an unavoidable personality change” brought about because he was “dominated by testosterone and mercury.” This, as you might recall, is a truly quacky idea promulgated by a father-son team of autism quacks, Mark and David Geier, whose concept was that testosterone somehow “bound” mercury (from vaccines, of course) so that it couldn’t be properly chelated out of the brain. Never mind that the study they relied on for claiming that testosterone could bind mercury reported such binding in hot benzene, whose relevance to the aqueous solution that is human blood and serum is highly dubious, at best. The Geiers’ suggested solution was chelation therapy plus Lupron, the latter of which shuts down sex hormone production quite markedly and is a drug sometimes used for chemical castration.
As repeated several times in the judgment and by Deer, nowhere is there evidence to support any of these diagnoses from reputable medical practitioners, nor does the medical record support a temporal link between MMR vaccination and onset of autistic symptoms (or other symptoms), for that matter. E’s explanation? Those records are missing, doctors didn’t record the stories and incidents that she related to them, and that doctors or someone has removed relevant pages of the medical record. However, the court, after considerable investigation, concluded:
For some time E has alleged that part of M’s medical record is missing. The inference that she invited the court to draw was that pages had been deliberately removed to conceal contemporaneous records of his reaction to the MMR. It is now clear that no part of the records have been removed. One page of the records was missing and copies produced by E and A, but the original record was intact. I am not going to speculate on the reason why the copies produced by E and A are incomplete.
This sort of claim is repeated time after time after time by E, as described in the judgment. Conveniently, all the verifiable medical records that would back up her assertions have gone missing somehow. The implication, of course, is that it’s a conspiracy to discredit her, an implication the judge rejected:
If M had an experienced an extreme reaction to the vaccine, as now alleged, it is inconceivable that E and A would not have sought medical advice and thereafter told all doctors and other medical practitioners about what had happened. As I put it to E in the course of the hearing, there are only three possible explanations for what has happened. The first is that E did give the account to Dr Baird and all the other practitioners at every appointment, but each of them has negligently failed to record it. The second is that she gave an account but all the practitioners have chosen not to include it in their records. That is what E maintains has happened, alleging that the whole of the medical profession is deliberately concealing the truth about the MMR vaccine. The third is that E has fabricated, or at least grossly exaggerated, her account.
Which is more likely? That M’s doctors over the course of nearly a decade failed to document such an important part of his medical history, or that the story about M’s vaccine reaction is not accurate? If the court were to believe the mother, it would have to have concluded that there was “an MMR conspiracy, through which thousands of doctors and scientists (and, more recently, journalists) concealed horrific alleged injuries to children,” a “legal conspiracy, through which judges denied fairness,” and a “local government conspiracy, by which hard-pressed social workers wanted to remove autistic children from their parents.” These are exactly the sort of conspiracy theories I’ve seen time after time since becoming interested in the antivaccine movement. I could write about them every day if I wished.
Of course, once the fake diagnoses are made, can the quack treatments be far behind? In this case, they weren’t. M was subjected to a veritable cornucopia of quackery by E and A. Besides the aforementioned wrapping of electrical equipment in M’s room with tin foil, there was quackery that involved everything from cranial osteopathy, reflexology, oxygen chamber sessions for six hours at a time (it’s not clear if it was hyperbaric oxygen or not), and, of course, lots and lots of supplements and homeopathic remedies. According to the judgment, “the range of biomedical interventions being supplied to M included a probiotic, six vitamin supplements, four mineral supplements, five trace elements, fatty acids, amino acids, enzymes and a range of homeopathic remedies.” One description of a treatment administered on November 11, 2012 states:
M had a cranial osteopathic appointment that focused on the contorted membrane between the two frontal lobes, apparently where both optical and auditory brain stems sit. The twist in his central membrane was significant for most of the treatment to be spent on it and it would appear to have come from M’s head overheating, obviously trying to release body heat.
Then there was reflexology:
He is also benefiting from reflexology twice a week at the moment, as his hands and feet are so pale, freezing cold, rigid and painful. We are giving sips of water in between mouthfuls to help it go down and we are ensuring his bite size is far smaller, but he does seem to be suffering with trapped wind.
All of this doesn’t even include the rigid diets imposed on M to try to cure his apparently nonexistent gut problems. Overall, in the story of M, we see a story I’ve seen all too often, that of parents latching on to vaccines as a cause of their child’s autism and trying to “recover” their child through a wide variety of quackery. These stories appear frequently at blogs like Age of Autism and The Thinking Moms’ Revolution.
Into darkness
The scenario described above would be bad enough if it were completely innocent, but there is more than just well-meaning parents who latched on to the myth that vaccines cause autism as an explanation why their child isn’t normal and embraced quackery in order to try to “recover” their “real” child. Deer states at one point that he had “merely thought that her son’s autism plus Wakefield had so stripped her of trust in almost anyone but charlatans that she had been driven off the rails” and noted that E’s picture could fit that of “thousands of parents” who are taken in by Wakefield, who, Deer points out, regularly appears at “conferences dominated by quack remedy merchants and crowded with mother warriors who – wrongly blaming themselves for having their children vaccinated – are uniquely vulnerable prey.” This latter observation is, of course, absolutely true. That is how Wakefield operates. He blames autism on vaccines, which leads these parents to feel guilty over their decision to vaccinate and, in their minds, cause their children’s autism. Then he offers them a way to assuage that guilt through “recovering” their “real” child via biomedical quackery.
However, as bad as that is, in some cases, it gets even darker than that. Some parents, apparently E among them, use vaccine injury as a means of control, and that is what the court found:
Although not a criminal case, a litany of misbehaviour runs from page to page in the judgment. “E” subjected her son to unnecessary tests and interventions “and/or lied” about purported illnesses. She behaved in a “devious and destructive” way towards professionals. She denied her son the chance to develop more independence. She allowed the pain and suffering of a dental abscess to go untreated for a year, then planned to send the lost teeth to Wakefield. She made false allegations against social workers, and vexatiously complained to regulators.
In the end, Baker ruled that, not only did she have factious disorder, but a bunch of other disorders as well: “narcissistic personality disorder”, “histrionic personality disorder” and elements of “emotionally unstable personality disorder”. Her legal deputyship status was revoked. “M” would receive a vaccine if a GP advised it. And the mother was told to demonstrate a “fundamental change of attitude”, or face “permanent steps” to restrict her involvement in the future of her much-loved son.
It’s as sad a story as one can imagine, particularly for M. In E’s case, where did the normal malleability and suggestibility of human memory, such that later information and influences can alter our memories such that we “remember” things that that didn’t happen or our memories of incidents are not what really happened, end and E’s factitious disorder begin? Who knows? Who can tell for sure when she was lying, when she really believed her son had various disorders, and what they were? In the end, when trying to safeguard M’s welfare, it really doesn’t much matter. What we do know is that Wakefield’s antivaccine message, coupled with the quackery that it spawned (it’s not for nothing that I like to describe Wakefield’s Lancet paper as the “paper that launched a thousand quacks”) gave E the tools, and she used them. She subjected M to unnecessary tests and quack treatments; she prevented him from becoming more independent; and she even sued a pharmaceutical company. Most bizarrely, she allowed M to suffer for a year with an untreated tooth abscess, planning to deliver the tooth to Wakefield.
None of this helped her son, and the judge concluded:
It is inevitable that, were M to return home, he will be subjected to the same regime as before in which his mother sought to reimpose control over all aspects of his life. Furthermore, it is likely that she would continue to misrepresent his state of health and expose him to unnecessary examinations and treatments. It is inconceivable that M could return home unless E demonstrates a fundamental change of attitude.
And:
This court acknowledges the enormous demands placed on anyone who has to care for a disabled child. Even though such carers are motivated by love – and I accept that both E and A love M and are deeply devoted to him – the burdens and strains on them are very great. Every reasonable allowance must be made for the fact that they love their vulnerable son and want the absolute best for him. Every reasonable allowance must be made for the impact of these burdens and strains when assessing allegations about the parents’ behaviour. However, having made every reasonable allowance for those factors, I find the behaviour exhibited on many occasions, by E in particular, was wholly unreasonable.
The saddest part is at the end, where the judge concludes that unless E and A can demonstrate a “fundamental change of attitude,” the court will have to move to take permanent steps to restrict their involvement in his life.
This whole family, but most of all M, is the sort of victim of Andrew Wakefield who don’t get enough attention.
180 replies on “The victims of Andrew Wakefield”
A sad case all around. The most charitable explanation I can come up with is that E doesn’t want to admit that she fell for a con. I understand that impulse–it’s the same reason so many surviving relatives of Burzynski’s patients continue to support him even after he fails to save their loved ones. But avoiding that truth has led E down quite a few rabbit holes.
M is now 25 years old. Many, but not all, autistic people can take care of themselves at that age. We don’t know from the story whether M would have always required care no matter what E and A did, or whether they never allowed him a chance to develop independent living skills.
I’ll be brief as I am soon expected elsewhere
what I’ve noticed reading and hearing dozens of mothers’ accounts is how neatly they fit into a central template:
child is fine/ vaccines/ immediate bad rx/ later autism dx.
It’s almost like a 4 act play –
I suppose it’s really 5 acts because parental devotion and travaille follow
People who study long term memory know how easily recall is affected by interference, belief, emotion and outright interpersonal tampering so it’s easy to imagine what happens here. LTM is not a videotape account.
The other day, Todd W.,IIRC, brought up John Mack who wrote about tales of alien abduction: the stories contain several elements frequently and resemble each other immensely. One aspect that always intrigued me was how closely the aliens resembled those portrayed vividly in a certain scifi film. The spate of tales of large black-eyed greys follows the popularity of that film.
I think that something similar is going on with parental tales esp via internet postings, warrior memoirs and woo-drenched lectures by so-called experts that lead recall/ fabrication towards an ideal representation of the damaged child/ warrior parent meme. We shouldn’t forget that there is a competition amongst parents to ‘top’ others’ tales and thus set oneself above the norm.
I have the niggling sense that there are a couple of more prominent anti-vaccine mamas whose children received the MMR before 1998 — whose stories of “vaccine injury” became elaborated after that date.
I forgot something about Waker’s anti-MMR activism: he blamed the Urabe strain of mumps (used in the UK MMR formulation from 1988-1992) for catastrophic effects.
Earlier this year, Joel A. Harrison, PhD, MPH, published a detailed critique of Callous Disregard, Wrong About Vaccine Safety: A Review of Andrew Wakefield’s “Callous Disregard” in which he debunks the main claims in “Callous Disregard”.
You can read a summary of Harrison’s paper at LeftBrainRightBrain, or download the whole paper.
I just feel so sad for M – he didn’t deserve all the things his parents put him through. I hope he’s placed in an appropriate setting where he can actually get the services he needs and deserves.
DW: The (un) Thinking Moms and the cultists talk a great game of parental devotion, but I doubt they’ve ever felt parental toward their autistic kids. Some people are so determined to wear hair shirts that they’ll knit their own.
Again, are we absolutely sure autistic children should be raised in a family environment? I just don’t know what it is about autism that breaks the parental ability to reason in the noisy majority. I doubt a story like this would *ever* be written about a kid with Down’s syndrome or a kid with cerebral palsy.
There you go again with the broad-brush stroke. FYI, the vast majority of parents of autistic children don’t buy into this crap and are exceptional parents and human beings. Way to disparage a community of parents based upon what a fringe chooses to do.
@PGP – Knitting your own hair shirt is the only way to make sure it won’t fit.
I swear, if I hear one more person refer to herself as a warrior mom I’m going to ask to see her DD-214.
Again, are we absolutely sure autistic children should be raised in a family environment? I just don’t know what it is about autism that breaks the parental ability to reason in the noisy majority.
Fortunately, not all parents of autistic children have these issues. It’s just that the ones who do are disproportionately likely to be loudmouths, like E in this case or the prominent “Thinking” Moms. I have no idea whether such parents are even a majority of parents of autistic children, but I would not assume so.
One of my neighbors has a kid, now in his mid 20s, whom I suspect may be autistic. (I haven’t actually confirmed this because it’s none of my business.) He still lives with his parents, but he has attended university, and while he’s not entirely normal he seems able to function reasonably well in familiar settings. He was undoubtedly lucky to have parents who accept him for what he is. But the parents should be given the chance, and if they screw it up as badly as E and A did, then authorities should take action.
@ PGP:
I can’t emphasise how much I believe that the parents about whom we write ( AoA, TMR, JABS) are extreme examples: first, most parents of kids with ASDs don’t buy into the vaccine causation theory and secondly, those who make a career of advocacy *a la* the TMs are even more extreme than AJW’s true believers because they proselytise and engage in competitve tale telling and public display. Some write books about their exploits ( and exploitation of their children-although they wouldn’t call it that).
Even these people may be devoted to their children although I can’t vouch for the degree of realism and healthiness in their relationships. Some parents imagine children as extensions of themselves, as property or as emblems of their own achievement: needless to say, people with psychological problems often have difficulties with interpersonal relationships in general so why should their roles as parents be any different?
I find some of the accounts I read loathesome and would not ever want to interact with these women myself so I certainly feel sympathy for their children. The issue of independence for people with ASDs ( or SMI) is very important and I find that many of those I survey might be effective at squelching any avenues towards these goals..
I know of a few ( non-client) parents who have effectively disabled their adult children’s chances towards being independent with normal relationships with others.
It’s a shame but it is by no means limited to parents of children with ASDs.
ScienceMom: “There you go again with the broad-brush stroke. FYI, the vast majority of parents of autistic children don’t buy into this crap and are exceptional parents and human beings. Way to disparage a community of parents based upon what a fringe chooses to do.”
Is it a fringe, though? For every sensible autistic parent who blogs or advocates (I can think of four off the top of my head, and you are one) there are ten anti-vaxxers. Hard to tell how that plays out in real life, given that most anti-vaxxers seem to be unpleasant, histrionic people.
RS: Oh, well played.
DW: Agree with all points.
Especially this: “I find some of the accounts I read loathesome and would not ever want to interact with these women myself so I certainly feel sympathy for their children. The issue of independence for people with ASDs ( or SMI) is very important and I find that many of those I survey might be effective at squelching any avenues towards these goals..
I know of a few ( non-client) parents who have effectively disabled their adult children’s chances towards being independent with normal relationships with others.
It’s a shame but it is by no means limited to parents of children with ASDs.”
Yep. I think Kim at AOA recently put her oldest under guardianship and consistently sabotages all three daughters, to the point that her husband actually called her out on it. (I think the context was that he was surprised she didn’t think any of the kids could get married or sustain a relationship.)
I’ve seen it with a friend too: her mother at one point threw away her anti-depressants. I had to coach the friend through the idea that medical confidentiality meant that her parents had no say in her medical treatments.
PGP: “For every sensible autistic parent who blogs or advocates (I can think of four off the top of my head, and you are one) there are ten anti-vaxxers.”
Being a nut does, almost certainly, increase the odds of making oneself highly visible by participating in blogging and other advocacy-type activities…that’s not an autism-in-the-family thing, that’s a people thing. Most non-nuts are too busy for all this or just have other hobbies.
Yes it’s a fringe, just a loud, obnoxious vocal one who choose to spend their time publicly competing in the martyrdom Olympics. That is not a reflection at all of the autism community where the vast majority of parents choose to provide an accepting, loving, productive environment for their children. Not everyone chooses to be vocal in a manner that you would be privy to and you need to be more mindful of your perceptions and how they can be biased before disparaging people.
Ebrill: “Being a nut does, almost certainly, increase the odds of making oneself highly visible by participating in blogging and other advocacy-type activities…that’s not an autism-in-the-family thing, that’s a people thing. ”
Fair enough. I’ve seen it play out in Christianity too. Moderates don’t blog or go on the TV.
SM: Ok, I get it.
@PoliticalGuineaPig:
This is a common misconception. Just because the extremists are loud doesn’t mean that there are more of them. Bolshevik means “majority”, but the Bolsheviks were actually in the minority.
Wakefield has created a large number of victims, directly and indirectly. A good actuary could probably calculate the number of years of life lost due to undervaccination, and even put a cost estimate on the suffering resulting from avoidable cases of measles.
Colloquially, though, I wonder if we could measure the harm in Wakefield Units. (Just as Dembski Units are a colloquial measurement for the magnitude of an error, named after the notorious creationist William Dembski.) One WU could count a single fatality, five avoidable hospitalizations, or ten avoidable infections.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2597185/
This review shows that while it likely is not a majority that use CAM extensively to treat their autism spectrum children. There are quite a few. How many fall into the “extremist” group, I’m not sure. Practically however, it is not feasible to provide a home for every autistic child. Also, I’m pretty sure the spectrum is diverse enough that the decision for home or hospital care would be a subjective one.
PGP, Have you met adults raised in an institution? Which is generally where they put people who are disabled and not raised by their parents. They do not exactly develop a sense of independence, either. Parents of disabled kids may need to be reminded not to smother their child, but somehow I doubt the success rate is going to be lower than that of institutionalized children.
I, too, have read the entire judgement, and a more depressing document would be difficult to find.
Amongst her other sins, the mother, “E” has exposed her son to public scrutiny, and she’s not alone. So many of those other “warrior mothers” have breached their child’s privacy. How will Evan, son of Jenny, feel when he grows up and reads this stuff on-line? How does Jake Crosby really feel when he reads how he is vaccine injured? And how will LJ Goes’ son feel when he discovers that his behaviour has been exposed by his mother (on a near daily basis) on her public FB profile? How will many children react when they find out that their parents have posted pictures of their bowel movements and intestinal mucosa after treatment with CD/MMS?
M had a tooth abcess for a *year* without treatment? I had one once, and in the course of an evening it went from “hurts a little” to “this is a lot of pain, go to the ER” to “somebody give me Novocaine stat so this pain will freaking stop stop stop!” (I got novocaine, an antibiotic, and tylenol with coedine with an order to get the tooth removed in a week once the infection went away.) He was lucky it didn’t go to his brain – that’s killed people.
(I’m not a friend of Kim Stagliano). Kim and her husband sought guardianship for their oldest child because of the child’s level of disability and in order to be able to make medical decisions for their disabled child, when they lose their rights as the parental natural guardians, when the child reaches adulthood at age 18. The State courts which determine guardianship require parents to petition the court and they must provide complete medical records which support the need for guardianship. My husband and I received full guardianship of my child (guardianship of the person) just before his 18th birthday and I am the substitute court-designated “guardian of the person” for a young man, in the event of his parents absence.
You can be certain that if I published an article (or blogged) about this case, I would not report “…but the mother obviously loves her child….”
I’ve stated my opinion before during discussions of “warrior moms” who shove industrial bleach enemas into their autistic kids, that these mothers are controlling, manipulative monsters, who abuse their children, behind closed doors…aided and abetted by enablers. Nothing (the brutal murder of Alex Spoudalakis by his mother and the attempted murder of Issy Stapleton by her mother), has changed my opinion about these monsters in mothers’ clothing.
@Broken Link, that may actually be the reason for the disproportionate number of rabid blogging parents of autistic children versus sane blogging parents of autistic children. Sane parents don’t want their children to someday read about how difficult they were. Sane parents don’t want their children’s prospective employers to read about how difficult they were. So I would think that sane parents of autistic children (or any difficult children) probably aren’t blogging a lot about their children.
E Canfield: ” Which is generally where they put people who are disabled and not raised by their parents. They do not exactly develop a sense of independence, either. Parents of disabled kids may need to be reminded not to smother their child, but somehow I doubt the success rate is going to be lower than that of institutionalized children.”
I’m aware of the problems with institutions. However, the choice seems to be between allowing children to be raised by uncaring strangers, or to have children be raised by uncaring family members and accepting an astonishingly high murder rate and death-by-quack. There’s no good solution, unless we mandate parental exams or pop the whole family into therapy the instant the kid is diagnosed.
“If you all could stop spreading your antivaccine message” there might be more funds to spend towards, oh I dunno, maybe a vaccine for Ebola? a cure for Type I diabetes?
What institutions? Didn’t you read the 92 page “Full Judgement” from the Protection Court, which is available on Brian Deer’s website?
http://briandeer.com/solved/mother-lied-protection-mmr-2.htm
The young man was placed in, what appears to be, a series of small group homes, where the mother wielded her power as his legal guardian, to severely restrict his development and his ability to make choices…i.e. she infantilized him.
The mother insisted that staff at these homes stuff her child with boatloads of supplements and engaged in power plays with the social services team members at every home where her child was placed and, it was an (unknown) professional who became concerned about the mother’s pathological smothering behavior who lodged a complaint with the Protection Court, on behalf of the young man.
If you had read the 92 page document, you would have read about the lies the mother told about her son’s supposed reaction (years after he was given MMR vaccine), to the shot. She described her child as being in a persistent vegetative state for 6 months, being diagnosed with multiple serious diseases and disorders including chronic Lyme disease (diagnosed by a quack alternative practitioner). Her child was diagnosed with an apical gum abscess and she never brought her son to a dentist to treat this excruciatingly painful abscess. After one year, when several teeth were extracted, she wanted to send those teeth to Andrew Wakefield, for analysis, perhaps…because she is a believer in mercury toxicity from vaccines.
During the hearing, she refused to have an attorney represent her and had the legal assistance of two other amateur lawyers/”warrior moms”.
The judge who made the decision to remove guardianship, stated that during the hearing the mother dominated the discussion and it was about me, me, me.
Psychiatrist examined the mother and she is diagnosed with a narcissistic personality disorder and a histrionic personality disorder, which are intractable to treatment.
Now we come to other “warrior moms” who meet on mothering boards and on crank anti-vaccine blogs. They, like “E” and many other anti-vaccine “warrior moms” and “warrior dads” (Kent Heckenlively), derive a sick satisfaction because of their notoriety. They are a very small, but vocal, group of autism parents who use the internet to spread their pseudoscience and their bio medical “treatments”. They present a real danger to their children, because no “treatment” is ever too implausible, or too invasive, or too painful and too dangerous for them to not inflict on their defenseless children.
That just about sums it up, I think. I’ve occasionally had to deal with people like that, and it can be an effing nightmare.
@Broken Link and @LW: I think you both have a point about the children of the rabid warrior mums. I’m thinking of the absolutely wonderful Autismum, who advocates very effectively for autistic children and is very pro-vaccine. While she talks about her son she doesn’t take the same martyred tone – her love and dedication is clear. She has the view “right, my son is autistic, I love him dearly, how can I best help him?” rather than “what evil force stole my beautiful perfect child from me????” that you get from the warrior moms.
PGP at #12:
I am curious, PGP. How many parents of autistic children do you know well in real life? How many parents of autistic children have you interviewed? How many autistic adults do you know in real life? Do you interact with any in real life?
I found you comment both astonishingly ignorant and astonishingly arrogant.
Most of the autism parents I know, in person and in electronic life, reject the “vaccines dunnit” hypothesis. (The N is > 100). If they are online in social media, a casual peruser such as yourself couldn’t find them, because they aren’t wasting their time opposing a failed hypothesis; they’re communicating with other parents who share their views and experiences, in venues that aren’t of interest to people who are just looking for ammunition for their biases. Or they are busy fighting insurance companies to get their kids’ needs met, or sharing IEP success & failure stories, or celebrating their kids’ growth.
And I wonder: are you aware that there are autistic adults? Why yes, there are! Of the >100 I know, only two ascribe their autism to vaccines.
Liz Ditz: I know a few families socially. My best friend’s parents are nice.
I’m not sure it counts since my friend has Aspergers. She’s one of the two diagnosed Aspies I know. It’s likely I know a few undiagnosed people (might even be one myself), and I went to a school that specialized in learning disorders. My father’s T.A.’s mother also has Aspergers, but I don’t often interact with that family. (They are *very* Christian, so I have to be careful what I say, walk on eggshells and lie about my work.)
There is a boy at the dojo I go to who is likely autistic, and my sensei is trying to recruit autistic students.
I’m a little wary of this move, since the prominent parent-bloggers despise people with ADD/ADHD (which I and most of the students there have) as much as they do autistic people, and it’s unclear how many real-life followers they have, and if the netitude they cop will bleed over into real life.
I’m not real interested in meeting or interacting with parents in real life (not being a parent myself), and even less interested in dealing with warrior mums.
I’d be amenable to a sit-down or an interview with someone like Calli,Autismum, or Sciencemom, but if someone I didn’t know identified themselves as a parent of an autistic child, my first instinct would be to vacate the area.
This whole mess reminds me of the “recovered memories” of the early 1990s when kids were accusing their parents of horrid crimes and in some cases getting them convicted. My spouses family was and still is affected by that craze. Then there are the Salem Witch trials. It all points to the inaccuracy and easy manipulation of memory. E and A were likely good parents at one time but slowly their memory and thus their behavior was corrupted.
For the pupose of the article, what is the difference between biomedical and regular quackery? It seems like he was exposed to all forms and not just one.
@ PGP:
Although well-known anti-vaxxers don’t present a pretty picture there are many other parents who stifle their children’s attempts at independence and freedom of thought & action:
believe me, I could tell you stories ( all non-client related, of course) that would curl/ straighten your hair – as the case may be. Quite a few of these people have no diagnosed conditions ( of either parent or child) while others do have formidable rates of concordance of SMI in their families. It goes across the board: it’s human nature to f@ck up others’ lives especially if they’re related tp you.
I would venture that when there are personality disorders or mental conditions involved ( in parent and/ or child) there might be even more mal-adaptive parenting because difficult situations bring out the worst in vulnerable people.
@PGP
PGP, the plural of anecdote is not data. There are probably more autistics that have been killed by their own television set than by parents that think that they are subhuman or are doing them a favor.
Justthestats: “There are probably more autistics that have been killed by their own television set than by parents that think that they are subhuman or are doing them a favor.”
I seriously doubt it. Kids in the worst neighborhood of say, Chicago, have better chances of making it to adulthood than a child with autism in a middle-class family.
PGP – citation needed.
pgp: I’ve deliberately avoided posting comments at you or about you and your attitudes, for months. In the not too distant past, I actually defended you because I was under the false belief that with maturity, you would learn from your past mistakes. I am now convinced that you have some serious prejudices against men, against Christians, against anyone who might have a different lifestyle than you. I need not repeat the dreadful comments you have posted which are hurtful and hateful.
As you well know, my son resided in specialized larger group home for nineteen years where he received the intensive care (including around the clock nursing care), he required to survive. You also are aware that my advocacy work was mainly devoted to shutting down the large State-run institutions, which were human warehouses, where the developmentally disabled languished in back wards which were dangerously understaffed. Yet…you, who I doubt ever visited those backwards and you, who I doubt ever visited a group home in your own neighborhood or volunteered some of your own precious time in classrooms where developmentally disabled children are taught, are posting comment after comment about “institutional care”. Cripes almighty, you are no different than Anne Dachel and her recurring rants about never seeing an autistic kid when she was growing up in the 1950s.
“I seriously doubt it. Kids in the worst neighborhood of say, Chicago, have better chances of making it to adulthood than a child with autism in a middle-class family.”
Do the dozens of parents/activists/parents of autistic children who blog for The Thinking Parents Guide to Autism, abuse or neglect their children?
Do the many parents of autistic kids, who post comments on this blog, abuse or neglect their children?
Do Matt Carey and Dr. Michael Fitzpatrick, who first blogged about the U.K. Protection Court’s decision to remove “E” as the guardian of her young adult son, mistreat their autistic children or lie about them or subject them to bizarre bio medical treatment?
http://leftbrainrightbrain.co.uk/2014/10/13/the-quacks-behind-the-warrior-moms/
Scroll down to see the questions I posed to Dr. Fitzpatrick about the colleges and the homes where “M” lived before, during and after the guardianship hearing.
I received an email from Dr. Fitzpatrick who clarified that the colleges which “M” attended are not academic institutions, but rather vocational trades schools and that the “houses” described in Mr. Justice Baker’s 92 page ruling, are indeed small group homes….not institutions.
End of rant…maybe.
lilady: “Do the many parents of autistic kids, who post comments on this blog, abuse or neglect their children?
Do Matt Carey and Dr. Michael Fitzpatrick, who first blogged about the U.K. Protection Court’s decision to remove “E” as the guardian of her young adult son, mistreat their autistic children or lie about them or subject them to bizarre bio medical treatment?”
No, all of the above behave like sane caring parents, but as I pointed out, they are the minority. As I pointed out, in dealing with the majority, we have a few choices, but none of them are good. I suggest creches or small group homes, because I have completely lost confidence in the idea that parents of autistic children can raise those children and not fall prey to quacks or just completely break. Large institiutions obviously failed, but keeping kids with their families isn’t working either. If you’ve got better suggestions, feel free to tell me.
As for the personal attack:
I monitor various blogs online, as well as occasional forays to blogs about Reddit (specifically the dudesphere there) and the info helps me decide whether various groups are healthy to be around, and what they are really thinking about people. Real life is mediated by lies, after all. People only feel safe telling the truth online, where no one can find them.
I have thought about joining a church, as it’s an easy way to get into politics and provides a network, but I’d either have to lie like a rug, or give up all of my hobbies (same goes for dating.) Giving up birdwatching and reading would be the worst.
@ PGP:
Why not be more direct and join a political party or a group that advocates for women/ pro-choice/ etc?
They usually need volunteers who can perform various services including calling people, getting people registered, mailing material.
You live in an urban area which is relatively liberal so you won’t have to step directly into the lions’ den.**
**Yes, Christians are the lions in this metaphor.
FTFY.
* In the literal sense.
“I have thought about joining a church, as it’s an easy way to get into politics and provides a network, but I’d either have to lie like a rug, or give up all of my hobbies (same goes for dating.) Giving up birdwatching and reading would be the worst.”
I belong to a church. I have not given up any hobbies. Get out into the real world some time.
Depending on what you like to read, you might need to have another book going to talk about instead, at many churches. However, if the churches you’ve checked out have given you the impression that birdwatching is baaaaaad, I think perhaps you haven’t gotten a representative sample.
Can I pick the brains and knowledge available here?
I’m wondering when a narcissistic personality turns into an actual disorder and what some signs might be and also whether that in itself should give worry about Factitious disorder by proxy -are the two correlated, is narcissistic disorder a precursor for instance?
Thanks in advance
@ JCL:
Although I’m not working with more clinical aspects of psychology these days, I’d venture that all of these diagnoses involve a question of degree and whether this constellation of symptoms is the person’s primary mode of functioning interpersonally. A person might display a symptom or two but doesn’t fulfill other criteria. You can take a look at the DSM 5 for the differences between various personality disorders and factitious disorders. There has been speculation that these disorders stem from early experiences with parents as well as possiby having a biological component.
Personality disorders in general reflect difficulty dealing with other people and problems with self appraisal- in short, executive functioning ain’t what it should be. IIRC factitious disorders are more likely in people who also have personality disorders.
Everyone has probably had to deal with “difficult people”: often, personality disorders are involved ( although SMI is also a possibility).You have to walk on eggshells, every comment you make might be questioned and analysed, you might be accused of improprieties or challenged, a great deal of time is spent in discussion about personal value, worth etc etc.
Sometimes the person appears to function on a level well below their general intelligence or development, in other words more like a child. Having disorders like these are not a choice a person makes.
@DW
Thanks for your response. Its unreasonable ofc to expect anything except general replies to my questions – how could anyone without knowing the background and people involved?
But just to put it into context, I do have real worries about a person involved in my childs upbringing
– and I had them before this case came out or this blog was posted (just so you know!). She certainly is
a difficult character with strong narcissistic traits – which I couldn’t care less about generally (I’m pretty
difficult myself by all accounts) – but there is an exaggeration when it comes to our child and his upbringing
which I’m finding increasingly worrying (many small incidents) and I suppose other possible correlations (like she used to be a pediatric nurse for a while – 30 years ago, she gave it up in her early 30s, but if you were talking to her you would think she was still practising).
Obviously its a bit of a tricky one to navigate personally, and I guess what I’m really looking for is some definite
indications to look for which would justify me broaching this subject with my partner or realize that its just
one of those dammed interpersonal things.
But this isn’t an agony column and I realize that any response must be limited anyway by the lack of facts,
just in reading this case I saw ‘E’s narcissism and potential factitious syndrome and I suppose joined the dots,
and now I’m wondering how closely the dots should be joined in reality.
@ JCL:
Obviously even if someone does have a personality disorder it is not enough reason to believe that that person is harming a child.
I would look for physical signs and unprovoked reports by the child ( I mean, that occur without questioning). Of course, you would want to avoid any possible harm that may occur in the future but we don’t know that for sure in the present: suspicions aren’t enough. But you can be observant.
I might look for frequency of visits to doctors and/ or emergency rooms as a start. Also if new problems develop for the child ( e.g. worse grades in school, being unhappy) I probably also would like to speak to a legal representative at some time ( esp if you had representation for divorce etc).
Best wishes: this may not be easy. I hope you are being over-cautious.
@DW
Thanks again for the advise. I too hope I’m being overcautious – its one of those things where if you wait it may be too late, but there seems little option.
But I’ll keep my eyes (and mind) open..
How excatly have you established that caring parents of autistic children represent a minority, pgp?
For that matter, what percentage of all parents of autistic children do they constitute? After all, you must have been able to get an accurate measurement of caring and non-caring parents, or an accurate measurement of all parents with an accurate measurement of one of the subgroups (caring or uncaring) to make such a statement.
@PGP
I don’t personally know any parents like the ones you think the majority of parents of autistics are like, but I do personally know two different families that have had a child killed by their own furniture. By your anecdote-based standards, it should be obvious that any furniture-owning parent should have their children taken away from them for their own good.
Your sampling technique is terrible. If you go to someplace where people with horrible behavior/belief X congregate, it’s entirely unsurprising that you’ll find people with X there. But it’s entirely unsupportable to assume that means that X is common in the wider population. Instead, you should probably assume the opposite, because people with common/socially acceptable behaviors and beliefs have a lot less need for places to gather.
As a male, I can tell you that the vast majority of men don’t start talking like sexist rape-loving jerks the moment there are no females present (I’m assuming that’s what the “dudesphere” is, although I have to say I’m unfamiliar with the term.) Most people are horrified by such beliefs. I can’t say I hang around other parents of autistics much, but the ones that I do know are clearly no danger to their children.
Seriously, PGP, if you get to know more people, you’ll realize that the vast majority of people are not evil, even if they have beliefs different from yours. And you’ll find that most people are much, much more accommodating of your beliefs than you seem to be of theirs. There are the loudmouthed exceptions, but remember that they stand out because of their rarity, not because of their commonness.
DW: “Why not be more direct and join a political party or a group that advocates for women/ pro-choice/ etc?”
I have, though I might take a more active role. I’m crap at talking on the phone, but better at in-person things.
ebrillblaiddes: I read mostly sci-fi and fantasy, and a very few novels. I’ve only read the Screwtape Letters, as most other ‘Christian novels’ are thin gruel compared to my usual diet of books. Most of the soundings I’ve taken on Christian stances regarding the environment indicate that if you aren’t out there to hunt, fish or litter, you’re making Jesus cry. (Don’t get me started on ‘Christian environmentalists,’ please.)
Shay: What are your hobbies, though? Hunting’s acceptable, most of the crafts, fishing, old music (here defined as anything predating 1960). Also, military service is basically a free pass to Heaven these days.
Most of what I like would never be acceptable to God or any chuchgoers, as last I checked, God doesn’t like loud music, approve of any books not written by Christians, the environment, graphic novels, animation, stars…it’s funny how God hates a ton of stuff and likes about ten things.
PGP — my hobbies include reading and birdwatching.
“it’s funny how {my full of sh!t imagination says} God hates a ton of stuff and likes about ten things”
FTFY.
Shay: Huh.
brewandferment: It’s not my imagination, it’s what the guys on TV say, and given that none of them have suffered death by lightning..well, I guess they’ve got their harps all picked out.
I don’t ever recall, in any church I have ever attended over the last 50 years, on three continents and half a dozen denominations, being questioned about my hobbies or what books I was reading (except perhaps while making polite conversation over coffee after the service).
And if you think God doesn’t approve of loud music you have never been to a Deep South black Gospel service.
@pgp – all I can hope is that this is your idea of amusement – present the most extreme obnoxious POV possible to see who bites. Mostly I skim and ignore your comments but every so often feeding a troll is unavoidable.
My 2 cents – I’m an outspoken liberal atheist and I still have no trouble enjoying the company of folks of many different religions. Heck, a friend and I even rented the local congregational church hall for an atheists potluck (and yes, they knew we were atheists and no they didn’t care).
Your comments about the vast majority of parents of autistic children are really really insulting, cruel and ignorant..
Y’all should know by now that, when speaking about people, PGP doesn’t care about facts or evidence, only truthiness.
Narcissistic personality disorder, huh? Makes sense. Most of the “warrior parents” I’ve encountered seemed to care more about how much they suffered than their children’s plight. Some said some truly nasty things about their own children, claiming they had no thoughts or emotions. One actually tried to gaslight me during a conversation, insisting he never said what he said. Unfortunately for him, it was an online conversation, and I could simply quote his previous posts. It seems that Wakefield’s quackery holds special appeal to those who love only themselves.
PGP: This only applies to warrior parents, who are by far the minority. Here’s something I’ve told multiple cranks: You are neither omniscient nor infallible. Do not assume your perceptions are all of reality.
I suspect there’s a reason all those pipe organs aren’t playing when someone in the chancel is trying to speak.
PGP: There are plenty of churches where you would do better to not mention books where magic is part of the setting…however there are also plenty where they get that it’s just an imaginary world, so all you would have to do there is screen properly.
Also, I’ve noticed somewhat the same thing as something you mentioned, that a good deal of fiction labeled as Christian is pretty much thinly veiled sermons, or else dreck with a sermon duct taped in to earn the label, and either way it wouldn’t sell without the label. It’s also true that there are those who don’t read much else…but they aren’t politically active in any directions that would be interested in, so the fact that you don’t fancy that sort of thing isn’t something you would run into.
The position you’re describing on the environment, though, is not something that any church I ever went to would agree with, and I was raised Baptist to the extent I was raised anything. Just to take the litter example, every year at camp, the leaders were very strict about picking up behind ourselves…there were also nature hikes which sometimes ended in hugging a tree. The thing is that if you want to get some groups of religious people to agree with you about taking care of nature, you’ll get better traction by calling it “stewardship” instead of “environmentalism.”
@ JCL
I’ve done a good bit of research on NPD out of concern for two folks I suspect were victimized by narcissists. What I’ve found supports Denise’s notion that there’s a range of degrees involved. A person can also exhibit narcissistic tendencies without being NPD. As Denise says again, it’s a question of central these traits are to how they function day-to-day.
While NPD is hardly uncommon, Munchausen By Proxy is very rare. IIRC some doctor observed it’s shows up more often as a plot device on TV medical dramas than in real life. One does not necessarily lead to the other at all, and to echo Denise, a personality disorder is not cause to believe a person would physically harm a child.
HOWEVER, I would never let a narcissist have a significant role in caring for or raising a child. They’re interpersonal wrecking-machines, likely to damage the psyche anyone who gets close to them, and children are especially vulnerable.
You’re not likely to get much of a picture out of the careful doctor-speak in the DSM, or the info on professional medical websites. I suggest you take a look atthis website, by the late author Joanna Ashmun, which discusses NPD from the perspective of a lay person’s life experiences with a series of narcissists.
I haven’t found a discussion of Ashmun by a credentialed psychologist or psychiatrist, so I have no idea what medical professionals think of her perspective. The site is much-praised by other lay-persons tackling the question of narcissism. It should probably be taken with a grain of salt, but looking through my own skeptical eye, I didn’t see anything there that’s inconsistent with the DSM or other professional literature on the subject. It’s just more vivid and detailed. (Again, I don’t have a personal axe to grind here, as I’ve never dealt with narcissists myself. I was just trying to get a handle on some weird behavior that was having negative effects on other people…)
Good luck!
@JCL
If you’re in a position of dealing with someone you think is displaying some traits of personality disorder, I can recommend Emotional Vampires: Dealing with People Who Drain You Dry by Albert J. Bernstein. It’s an entertaining read, but it also provides a lot of useful tools for actually handling day-to-day dealings with such people and reducing the stress they cause.
@ PGP:
Why join a church if you are not a believer?
There are plenty of organisations and actiivities that are primarily secular:
political parties, “causes”, women’s activism groups, literary societies, environmental interests, book clubs, social singles ( which meet up for dinners/ films/ cocktails) sports related groups ( hey, martial arts) etc.
I’ve never found a need for a church and would feel a hypocrite to join- however, most of my familiy were/ are agnostics or atheists so perhaps I’m following tradition.
@ PGP:
Ah, the guys on TV as reputable sources. Riiiiiight. You sure lost all skeptic points in my eyes with that statement. I think you just enjoy being disagreeable and looking to validate your prejudices so you have an excuse not to do something. Why not just own it and say you don’t want to do _____, rather than look for some absurd “reason” why it’s no good?
To add to what Denice @#64 posted — I do not want anyone to assume from my comments that I am urging PGP to join a church. Quite the contrary. I don’t think that would be beneficial to either party.
(Although it’s tempting to wonder what the Unitarians might be able to do with her).
Shay, I’d say a coatrack/hatstand would be the most likely outcome of that “to do” scenario… 🙂
I was thinking a bit more positively…Unitarians aren’t into muscular Christianity, so far as I know.
Actually, since Unitarians tend to be very inclusive/accepting of differences, it might be a good experience for her.
@pgp
You do seem to be taking certain relatively small groups of people as representative of much wider and diverse populations.
“Parents of ASD children” =/= “Parents who believe vaccines harmed their kids” =/= “Parents who crusade against vaccines on blogs like AoA”. Only a small minority of ASD parents buy into the vaccine theory, and only an even smaller minority consider their kids ‘broken’ or sub-human as a result, and only an even smaller minority rant about that on the Web. The numbers of that vocal group are still disturbing, but then any cult is disturbing even if it only has a dozen or so members (c.f. The Manson Family).
Similarly with religion. “Westboro Baptists” =/= “Christian Fundamentalist Conservaties” =/= “Christians” =/= “Monotheists” =/= “people who go to Church.” Unitarian Universalists, for example, have no theology, only principles of living, and many congregations welcome Atheists, Pantheists, Neopagans… check the Wikipedia entry:
http://en.wikipedia.org/wiki/Unitarian_Universalism
Not that I’m suggesting you should join a Unitarian congregation. They’re pretty upbeat, and cynicism doesn’t play well there. Not that you’d get criticized for exhibiting any snark, they’d probably just show you more love, which might be even more annoying. The point is you can’t stereotype all churchy folk from the Evangelical crazies. Atheist though I’ve always been, I’ve been to Catholic Mass and a Mennonite Service with friends and they’re as Apples and Oranges as anything could be.
The real problem with the religious stereotyping is it plays into the hands of the bad guys. “Born Again” Evangelicals assert the label “Christian” to describe themselves and exclude everybody else. One of my grad school friends wound up teaching for awhile at Middle Tennessee State in Murphreesboro, which is very Bible Belt. She grew up in Northwest Minnesota and is of 100% Norwegian heritage. She told me that after the first class of one of her courses, a student came up to chat, nicely, but out of curiosity borne of never having met anyone who WASN’T some sort of Evangelical before. The student said, in all sincerity “I wanted to ask you, are Lutherans Christian? I know Catholics aren’t.”
So when you take Evangelicals to be ALL Christians, you’re supporting their agenda of redefining the term in their own image. For yes, U.S. Congressman Paul Broun (R, GA), has stated publicly that the pastors of “mainstream denominations” are “going to send their people to hell because they don’t know Jesus personally as Lord and Savior.”
So, yeah, pgp, you might not want to assume anything you read on the Internet or hear on TV is typical of anything but a (admittedly possibly dangerous) vocal minority of one sort or another. And it might be good to get out more.
There’s no ‘science’ on this, but the qualitative studies suggest just the opposite, that online anonymity enables the construction of fantasy personae a person would never assume IRL. Which is not to say that one persona is true and the other is a lie, but that each inhabits a different universe.
Read this:
http://gender.eserver.org/violation-and-virtuality.txt
(there’s some dense theory-jargon at the end you can skip and still get the general idea)
and this:
http://dcrit.sva.edu/wp-content/uploads/1993/12/Dibbellcyberspace.pdf
What happens in cyberspace stays in cyberspace, though the effects resonate out into real life.
Pgp is not just against all religions. What she has stated about male doctors and men in general (she doesn’t trust them because they all get “rapey”) and parents of developmentally disabled children, is far more damaging, hateful and hurtful.
Joining a church is not going to help her with her willful categorizations of whole groups of people, who she knows nothing about.
Rather than squatting here posting her poison pen comments, I suggest she gets some serious professional help, for her anger issues and for her warped ways of viewing the world.
@ sadmar:
I took a look at Ashmun’s site: although I only skimmed and then selected about 10 entries or so, I didn’t see anything obviously misleading or unrealistic for the public to read.
She makes it clear that she isn’t / wasn’t a professional ( and mentions sites from reasonable sources) and that she’s relating her personal experiences and viewpoint.
Sometimes material like this ( or articles by journalists/ writers interested in more artistic expression about such issues) can be very useful- they focus on emotional reactions, daily life situations and real life consequences more than a clinical account or technical format would and this might help readers to imagine themselves in similar circumstances themselves.
I also think novelists can instruct us about the human condition in regards to mental illness and individual personality differences and anomalies. Not everything useful or insightful is learned in a classroom.
I don’t think it has been mentioned here, but I just read a story in the UK Times newspaper about a couple in France who are being prosecuted by the French government for refusing to vaccinate their children. It’s also covered in this article. I’m inclined to support the French government on this one; though I support personal freedom, not vaccinating puts other people’s health at risk.
Krebiozen: I wonder how that case in France was missed by our very own legal consultant Dorit Rubinstein Reiss. Oh wait…
http://www.skepticalraptor.com/skepticalraptorblog.php/freedom-vaccinate-france-a-court-case/
PGP’s experiences with that particular brand of Christian sure sound like the people with whom I went to high school. Heck, some of them don’t even allow instrumental music at their services, and if you by chance happened to go over to their houses, you might find three books in the whole place, one of which was a Bible, usually also only the New Testament, no less. Those folks generally do take a dim view of reading generally, not to mention secular music, talking about politics, and just about anything else you can name. And don’t tell me I’m stereotyping; I grew up around these people, and I ate at their dinner tables, refused countless invitations to their church services, and met their families.
I wouldn’t say they’re necessarily a majority of total Christians, although they certainly can dominate the Christian landscape in a local area (as they do in the rural counties around my high school — I went to high school with Justin Bieber’s aunt, FWIW, and he’s a super example of the type, actually), and they definitely exist. I’m wary of them generally too, and for good bloody reason — they’re nucking futs, and they’re always looking to recruit you, whether you want them to or not, and they suck at taking no for an answer.
I’d hate to think what the local crew would have to say about my current religious inclinations; it’d probably drop my opinion of them even lower than it already is.
@interrobang:
Much of the beef with PGP is that it’s just one of her many broad sweeps of generalizations without any personal knowledge–TV preachers are far from being a credible source–it’s as credulous as taking Mehmet Oz’s show for good medical advice, as only one example.
Interrobang, please read all the comments upthread, especially mine and pgp’s, to understand that she is again stereotyping and classifying entire groups of people, according to her own prejudices.
Pgp, who lives in her self-made small world, labeled most parents of autistic/developmentally disabled as unfit to be parents, as cruel, as uncaring and as abusive.
I care about all my friends on this blog and on other science blogs, who love and adore their autistic kids and who share my opinions about the very small number of parents who inflict pain on their autistic kids behind closed door, and who ignore their children’s real medical (and dental) care.
I also care that pgp, has, in the past, accused male doctors of being untrustworthy and all men capable of being “rapey”.
Interrobang, it’s incumbent on the late arrivers to read the entire blog, the 92 page Protection Court’s decision and the previous comments, before making a comment. 🙂
In mostly unrelated news, there was a hearing on what I would presume to be Maurice’s motion to terminate the guardianship of Sarah Hershberger last Friday.
lilady,
I should have guess Dorit would have covered it, thanks.
@sadmar #62
@grouchybeast #63
Thanks both for those links – looks like some stuff that will be useful to me
No vaccine link, no AJW, but I just read a story in NY Magazine about Kelli Stapleton who attempted to murder her violently autistic daughter and (maybe) kill herself as well. It’s an interesting comparison/contrast with E. Stapleton exhibited symptoms of an apparently less severe personality disorder (and indeed had been abused as a child herself) exacerbated by the fact her daughter had knocked her unconscious so many times she had concussion trauma and PTSD.
Actually, she doesn’t seem NPD at all to me from the details in the article, but certain aspects of the ‘template’ are there: Stapleton was desperate to ‘fix’ her daughter so that they might return to a ‘normal’ life. Up to the point she cracked, she was so devoted to her daughter that she seemed to some to neglect her other kids, to define herself as ‘autism mom’ be that hero or victim. Her in-laws (who don’t come off well in the story) considered her a drama queen, and the psychiatric testimony at trial painted her as prone to “seek attention in unreasonable ways.”
Her attorney was preparing an insanity defense, but Stapleton martyred herself by giving an interview to Dr. Phil against the attorney’s wishes in which she basically made the State’s case for pre-meditiated attempted murder. She plead guilty to a reduced count of felony child abuse, was sentenced to 10-22 years, and seemed happy with the sentence, calling herself “a monster who deserved to go to prison for a “long, long time.”
On the other hand, her kid was literally beating the crap out of her on a regular basis, and her husband apparently let her shoulder the entire burden of the child-rearing. It’s hard to imagine anyone with a fragile psyche NOT cracking under those conditions.
The comments under the story are about what you’d expect, very emotional, personal. Some just say the story is sad all around, but the majority are judgmental one way or the other: some paint Stapleton as pure evil; others see her as an essentially blameless victim. There’s some thoughfulness, for sure, the first post is especially effective at painting the difficulties faced by any parent with a ‘special needs’ child, especially one with violent tendencies. But on the whole, the commenters have an (understandably) hard time wrapping their heads around how to account for Stapleton’s complicated psychology. Most seem to be looking for some ONE to blame. Only a few begin to apprehend a more systemic problem.
The article’s author Hanna Rosin doesn’t seem to know what to make of Stapleton either, though maybe that’s just good reporting, telling the story withut pretending to have answers. She says this though, which I found interesting:
To whatever extent Stapleton can be faulted on moral grounds, it strikes me that the broadly held concepts of parenting in our culture leave parents very poorly equipped to understand themselves in relation to their more severe ASD kids. As far as I know, the majority of ASD parents are laudable in their care, but the minority of problem cases that show up in anti-immuno world still amounts to worrisome numbers.
It’s also this larger ideology of parenting, with Mom especially as hero or villain, that gives the anti-immuno crusaders enough cred at one or two removes to the ‘normal’ folks who catch wind of the discourse and get spooked just enough to delay that trip to the doctors office for the MMR.
My takeaway from all this is that this is way bigger than any one person, certainly bigger than a con artist like AJW. Blaming Wakefield for the falling vaccination rate is like blaming vaccines for autism: it wraps up a very complicated phenomenon with a simple tidy explanation, and a convenient target to blame for a condition we’re not equipped to understand.
So there’s two different public health issues here. One is how to reduce the influence of the unbalanced crusaders on the public at large. The answer may include pointing out that the folks spreading the myth are not Hero Moms, but folks with actual DSM-defined delusions who may be doing their kids more harm than good even as they paint themselves as selfless warriors.
The other problem is how to help these people’s kids. What mechanisms could be put in place to help keep the Kelli Stapletons from going over the edge? Off the top of my head, I’m thinking health insurance should not only cover care for ASD children, but pysch services for their parents — maybe even mandatory? — something like support groups run by well qualified psychologists, where the more fragile and woo receptive would have mediating role models from more grounded parents, and the professional could hopefully spot the folks like E who have the kind of personality disorder that can’t be fixed, and need to have their kids taken away before they truly mess them up.
There are a lot more proven facts about Kelli Stapleton and her premeditated plan to murder her autistic child. Kelli Stapleton built an entire career as a “warrior mom/martyr” and her plan to brutally murder her child, left her child in a coma for four days with permanent traumatic brain injury from carbon monoxide poisoning.
http://leftbrainrightbrain.co.uk/2014/09/13/when-a-child-is-killed-by-a-parent-the-word-but-does-not-apply/
As far as we are aware, Wakefield was not involved in the decisions Kelli Stapleton made. Wakefield, the bio meddlers from Age of Autism and the Autism is Medical group were deeply involved in the brutal premeditated murder of Alex Spourdalakis by his mother and his caregiver.
Another crap article written so readers will sympathise with the murdering parent. I’m glad you have it all figured out sadmar but you’re wrong. Kelli is a drama queen and her ex-husband has always been a very involved father. There were options that didn’t involve trying to kill her own daughter; Kelli CHOSE not to exercise them.
lilady #82, Science Mom #83
You’re missing the point. Yes Stapleton seems to have built a ‘career’ as a martyr mom, to have become a drama queen, and to have premeditated a plan to murder her daughter Issy that came close enough to working that the child was in a coma for four days. But to attribute total ‘choice’ to a person with significant psych issues, under considerable mental stress, and suffering from physical abuse is passing the buck.
As Rosin points out, the beatings Stapleton received were comparable to ‘domestic abuse’ but unlike the women abused by their partners (who usually stay anyway) she didn’t have the option of leaving. Where this story is atypical from a true horror warrior mom like E is the (not that common, as I understand it) degree of violence exhibited by the child.
The point is that Stapleton’s trajectory was shaped by an ideology of parenting in general that validates Hero, Warrior and Martyr momism in ‘normal’ parenting, to the point where folks are unable to see when that crosses the line into pathlogy. Rosin’s article is sympathetic to Stapleton only in a limited way, as Rosin does what she can within the bounds of reporting to suggest Stapleton was deluding herself about suicide, and deep inside at least intended to survive all along.
The point, again, is that we have do not have proper mechanisms to keep this from happening again, effective way to intervene with the Kelli Stapletons and get them back on track if possible, or to get the kids away from full-on NPD nut-jobs like E (or apparently, Dorothy Spourdakis). I have no sympathy for that level of narcissism, but I understand it. It doesn’t come out of nowhere. There’s probably a genetic psychological fragility, and then as kids some level of horrible and usually recurring abuse just breaks these folks humanity, leaving them trapped in their own world and unable to empathize with others. They ARE victims, but alas the literature holds little hope for helping them and suggests all you can do is get the hell away from them.
Stapleton may have focused primarily on herself, but she also had a concern for her younger daughter, who lived in fear of Issy. Ainsley Stapleton sometimes “had to hide under her bed or lock herself in a car to avoid the rage of her older sister.” This sounds like a prescription for giving Ainsley a personality disorder. Will we then blame Ainsley if she’s a less than ideal mother to her children?
As for Alex Spourdakis, Wakefield surely deserves a spot in hell for his role in pushing Dorothy Spourdakis towards murder. But note the differences between the Spourdakis and Stapleton cases. Alex did not seem to have a long history of serious violence to others. Kelli Stapleton was NOT offered services which she refused. She did not turn Issy over to a biomed quack. Orac wrote:
Beyond the desire to ‘fix’ Issy, none of that applys to Stapleton. She didn’t abuse Issy or try to make her less independent. She wanted Issy to stay in the behavior mod therapy program she’d begun, but the insurance company cut her off. DCFS doesn’t seem to have been involved at all. The school where Kelli Stapleton had hoped to mainstream Issy rejected her as too dangerous to the other students. Dorothy Spourdakis turned to Wakefield, Tommey and Atkinson to create a media narrative to blame “the medical establishment” for Alex’ death. Stapleton turned to Dr. Phil in full knowledge that he would crucify her.
Regardless, Kelli Stapleton simply couldn’t handle Issy, and should not have been in the position of being her primary caregiver. Did she give herself that role to some extent? Yes. Did social and cultural norms help push her there, and mitigate against anyone else interfering with ‘holy motherhood’? Absolutely. Matt Stapleton may have always been a loving father to Issy, but the family had devised a life plan based on very old school general norms. Matt was school principal, AND teacher, AND football coach, AND civic leader — the public King. Kelli was the nurturing caregiver for the kids — the domestic Queen. That set-up put them on the wrong road before Issy was born.
Forbes columnist Emily Willingham says of Dorothy Spourdakis “the guilt is hers and hers alone.” That’s just typical right-wing ultra-individualist ideology, offered to excuse everybody else for contributing to dysfunctional social systems and warped cultural norms. Andy Wakefield did not create ‘Warrior Momism’. Neither Kelli Stapleton or E chose to suffer childhood abuse or develop personality disorders, nor did they create the culture that reinforced “Mom the protector always knows best.”
The point, lilady and Science Mom, is NOT to excuse Kelli Stapleton for anything, but to ask of our society, our culture and ourselves whether the broader ‘we’ (not 3 RI commenters) did enough to protect Issy (and Alex), whether we are truly without some measure of blame, and what we need to do to help kids like Issy and Alex.
It seem that sadmar is frequently “Ms Understood”, when it comes to excusing people for bad behavior, up to and including the murders of their children.
So, you just found out about Kelli Stapleton and you made an armchair diagnosis…because your own background of significant mental health issues gives you that unique insight into the culture of “warrior moms” and “martyrs” and their penchant for seeking out like-minded parents who use their children’s developmental disabilities to garner sympathy and for notoriety, eh? Sorry, you are clueless about the motivations and the false pictures they present about their situations.
You see absolutely nothing wrong in using a child’s disability to garner sympathy and yet you criticize Issy’s father who was the sole wage earner for his family of five. You don’t have a problem with Kelli begging for money on multiple occasions to care for her child, when every bit of her care in the residential program she attended for seven months was paid for by the insurance coverage through her father’s job. Kelli was able to secure a Medicaid Waiver to pay for the care of her child during her waking hours. During those hours, Kelli ignored Issy and her other two children by using all those hours to post on her blog. She had written to the producers of the The Doctor Phil Show, years before the attempted murder, so that she could present herself as the do-gooder mother of a special needs child.
“Forbes columnist Emily Willingham says of Dorothy Spourdakis “the guilt is hers and hers alone.” That’s just typical right-wing ultra-individualist ideology, offered to excuse everybody else for contributing to dysfunctional social systems and warped cultural norms.”
http://www.forbes.com/sites/emilywillingham/2013/09/05/if-a-parent-murders-an-autistic-child-who-is-to-blame/
I know exactly what Emily Willingham posted on her blog about the murder of Alex Spourdalakis…having posted multiple comments there, along with other commenters from Respectful Insolence.
http://justthevax.blogspot.com/2013/09/sharyl-attkisson-and-cbs-dehumanise.html
Dr. Willingham is a respected science blogger, who earned her spot as a Forbes blogger. She is also a founder of The Thinking Persons Guide to Autism, the parent of three children, including a child diagnosed with an ASD. Nice stereotyping of what you believe to be Dr. Willingham’s “typical right-wing ultra-individualist ideology”. Heh, you couldn’t be more wrong about Dr. Willingham, if you tried.
Good grief, you are an ignorant, opinionated know-nothing expert in raising special needs children.
There.is.never.ever.an.excuse.to.murder.a.child.period.
Sadmar, you don’t know what in the hell you are talking about and base your knowledge of Stapleton on a single, badly written article. Dr. Willingham is also very knowledgeable regarding autism advocacy issues and your characterisation of her is just as ignorant as the rest of your post.
Talking about the victims of Andrew Wakefield, there are also all the deluded parents who think Andrew Wakefield is a hero and his paper is still, well, relevant.
I have just had an enormous chuckle at Anne Dachel’s Pharmacy-sponsored gig on AoA where she complains:
“I tried to post a comment, but I was informed that “YOU ARE UNABLE TO POST YOUR COMMENT BECAUSE YOU HAVE BEEN BLOCKED BY THE ATLANTIC.””
There is some interesting commentary on the article and only a few of Ms. Dachel’s followers have made it over. But by gumm they post some bilge.
lilady – if a child is dying of a terminal illness and in a great deal of pain I can understand the idea of wanting that suffering to end, and at least knowing that the only way to end it is death. This doesn’t apply in almost all parental homicides of disabled children. Yes, that includes the woman in South Africa who killed her three children with SMA – they didn’t have type one (the type that most articles talked about when describing the condition, usually killing a child by two or three years old) but type two, in which most children live to adulthood and even can have children.
To quote Ms. Stapleton, “The jail of Benzie County has been a much kinder warden than the jail of autism has been.”
So, good trade or something.
Looks like Andrew Wakefield has gone all chiropractic on us.
He is in good company: Sayer Ji, Jeffrey Smith, Bruce Lipton, Suzanne Humphries, Gregg Braden, the list goes on and on.
ChrisP said:
‘ also all the deluded parents who think Andrew Wakefield is a hero and that his paper is still, well, relevant’
We might remember that AJW took advantage of emotionally vulnerable- perhaps psychologically fragile- people – the parents. The type of person who would fall for Andy’s line is like the person who becomes a victim of snake oil salesmen: they are distraught and without that reserve of personal fortitude necessary to take on harsh reality thus they are drawn to a glib charlatan who can re-assure them that all will be well and that there are easy answers to difficult questions.
I would venture a guess that many amongst his chief promoters and fangirls/ bois do indeed have psychological issues that could probably be addressed with the proper help: buying into anti-vax propaganda is an evasion of reality – and eventually reality will come home to roost. People waste time, money, effort and life persuing phantoms and illusions that veil the hard truth.
You left out the bestest, most ironiest part:
“I tried to post ONE COMMENT…there were no links……. It seems The Atlantic is very selective in First Amendment rights.”
dedicated lurker: The three children who were smothered by their mother in the U.K., were not terminally ill. Alex Spourdalakis was healthy (odd, that there was no gastroenterologist in an 800 mile radius of Chicago who would subject him to scopings, in the absence of symptoms). Issy Stapleton was healthy until her mother damn near murdered her; she has lingering effects from the CNS hypoxia.
The bot is getting lazy and we now have to deal with the AoA “B Team” (maurinemeleck and Twylaa/Twyla):
http://www.theatlantic.com/health/archive/2014/10/how-anti-vaccine-fear-takes-hold/381355/#disqus_thread
The Dachelbot has always been lazy. I tend to doubt that it doesn’t actually have some grasp on why it keeps getting banned, given its occasional tweaking of its cut-and-paste spam, but the hit-and-run routine is so deeply ingrained that it’s been known to cry censorship when its comments in regional media outlets failed to appear quickly enough.
Maybe the reason why the bot’s comments don’t appear or are put in the moderation hopper is because they are off-topic.
Lately she’s shilling her own soon-to-be-published book and linking to her own previous AoA articles. Tacky, tacky, Anne.
I recall one occasion not too long ago when it was quite clear that nobody was around on the weekend and the ‘bot also had a fit. Such is the price of being too damned lazy to even try to keep track of where the proud scat deposits are.
I wonder if Ms Dachel will be including the undeniable truths about her hero:
(a) UK litigation involving 1,600 families stood no chance of success, and ultimately failed arising from Wakefield’s claims that the cause of autism were matters on which he had taken out patents and set up a business, and not what others, including parents, were saying.
(b) US litigation, involving, I believe, 6,000 families, stood no chance of success, and ultimately failed for the same reason.
(c) Substantial media interest in claims by parents that vaccines caused autism collapsed to almost nothing after his secret payments from lawyers, business schemes and research fraud were exposed.
(d) Nobody took a blind bit of notice of the fruits of Brian Hooker’s years of harrying CDC because Andrew Wakefield decided it was all about himself.
(e) After the lavish hospitality Wakefield received in the past from drug firms, there are credible grounds to believe that the pharmaceutical industry’s best friend.
Ooh. Andrew Wakefield and Brian Hooker write a 34 page letter to the CDC.
I’ve had some interactions on internet blogs with those U.K. potential litigants, who still claim undying devotion to Andrew Wakefield, I have yet to have any of the parents who thought Wakefield’s fraudulent “study” would yield windfalls for their children’s MMR vaccine-induced autistic enterocolitis, provide me with explanations why they didn’t testify on behalf of Wakefield’s Fitness-to-Practice hearing. I still wonder which lawyer advised them to not testify under oath at the GMC hearing, on behalf of Wakefield.
“US litigation, involving, I believe, 6,000 families, stood no chance of success, and ultimately failed for the same reason.”
Some of those cases, which supposedly had the best chance of prevailing in the Vaccine Court (nominated by petitioners as potential test cases), still remain open after 12 years of the filing of claims for vaccine-induced-autism:
http://www.uscfc.uscourts.gov/sites/default/files/autism/9%2017%2007%20list%20of%20potential%20cases.pdf
One of those “potential test cases” is the case file by Marcia and Brian Hooker 12 years ago, on behalf of their child’s purported “vaccine(s)-induced-autism”. Take note of the dozens of extensions filed by the plaintiffs and their attorney which were permitted by the Court…and the rogue’s list of “expert witnesses” who have submitted documents to the court:
http://www.plainsite.org/dockets/7m3of04r/united-states-court-of-federal-claims/hooker-et-al-v-hhs/
Hooker has now joined Wakefield, as a known fraudulent researcher, whose paper has been retracted due to poor study design and execution, blatant statistical errors and the undeclared COIs on the part of Mr. Hooker and the (unnamed) peer reviewers.
Mr. Deer, you misspoke. I and many of my colleagues have watched Hooker’s maneuvers as he ingratiated himself with wealthy benefactors in the anti-vaccine movement who bought Congressmen with generous donations and through super PACS, and as he turned on his supporters. Truly as odious as his colleague, Andrew Wakefield.
Chris P. Wow. So Wakefield and Hooker wrote 34 pages of absolute drivel. Are we supposed to be impressed?
Missing from the letter is the piece about Hooker’s “reanalysis” being retracted by his publisher, who citing poor study design, poor study execution, blatant errors in Hooker’s statistical analyses and the undeclared Conflict of Interests on the part of Brian Hooker and the (unnamed) peer reviewers.
Interesting that they report that Mr. Thompson supposedly suffered a mental breakdown and was delusional. The two fraudulent researchers took advantage of a mentally ill and delusional CDC employee.
lilady, I am impressed. The CDC is supposed to respond to this missive at a gmail address. I am always impressed when people muse gmail addresses for official documents. It makes them more official somehow.
Hooker does admit that his undeclared conflict of interest was his being on the board of Focus Autism, which funded the study, but tries to hand wave that away.
That should be ‘use’ not ‘muse’.
There are TWO articles up on AoA about the letter, written by their ace investigative reporters/science journalists Kent Heckenlively and Eben Plettner.
Smoke and mirrors about Hooker’s admitting to a Conflict of Interrest.
Here’s what he stated on his now retracted study about his competing interests, which was calculated to deceive his publisher.
“Dr. Hooker has been involved in vaccine/biologic litigation.”
Looks like past tense “involved” to me and looks like he could have been “involved” in litigation for a vaccine patent or a vaccine ingredient patent. Looks like he could have testified as an expert witness for a client in court. It certainly does not look like he has a 12-years-pending case on behalf of his child’s “vaccine injury” in the United States Court of Federal Claims, where he has made dozens of motions for extensions of time to submit additional medical records. Shoddy and Sleazy declaration of “competing interests”, IMO.
Look at this statement in the 34-page letter, which confirms what I have stated before about Thompson’s non-existent credentials as an epidemiologist.
“Dr. Hooker’s paper was reviewed and approved by Dr. Thompson.”
Thompson only has a PhD-Psychology degree. He does not have a degree in epidemiology or medical statistics and he never developed any skills to set up an epidemiology study. Just another mediocre pencil pusher who kept his head down, when in the company of competent researchers and epidemiologists at the CDC.
Lilady: I’m sorry, I take back any words of understanding for Brian Hooker. I see that these men have now published what is represented to be medical information about Dr Thompson, gleaned in a private conversation when, according to Hooker Thompson “appointed me his priest”. Somebody should write to the Simpson bible school and suggest that Hooker should be fired for such outrageous conduct.
These men will stoop to anything. Just sickening, unethical behaviour.
The irony is, that like that malignant fantasist David Lewis, Hooker is so big on his Christianity. So, so big on it.
Brian, no need to apologize. No one could have ever predicted that Wakefield, Hooker and that lawyer from Focus Autism, would have sunk so low to publicize intimate details about Thompson’s health problems.
And, there is more to come, according to a statement in that letter; further details from those private telephone conversations will be revealed during the lawsuit, which, the plan to institute.
Thompson placed his trust in these scam artists and viewed his dear friend Brian Hooker as his father-confessor priest. Some Christian he is.
What? A lawsuit? A lawsuit in which Wakefield can be deposed?
I take it all back. I LOVE BRIAN HOOKER.
It’s CHRISTMAS!!!!!!!!!!!!!!!!!!!!
Wait, a complaint filed by two individuals who not only have retracted research papers under their belts, but one who was found guilty of misconduct and had his license to practice revoked?
Yeah, that’ll be taken seriously…..;-)
Oh, and what is the “legal” nature of the complaint?
@Broan – don’t forget, Hooker as well, who will have to explain (and release) all of the recordings.
I see Wakkers asserts as part of his standing that if these results had been known his court cases in the UK would have been substatially affected. But as far as I understand it his various problems in the UK had in fact nothing to do with whether MMR actually does cause autism, but all to do with his dodgy methods of attempting to prove it was so.
So basically if I use dodgy research and phoney methods to prove the earth is round, I am a fraudulent researcher whether or no the earth is in fact round.
Am I right? Seems like he’s got no real standing once again…
I believe this statement which refers to “due legal process” means that Wakefield will be deposed.
From the Wakefield-Hooker letter at the bottom of Page 16:
.
Thompson was ordered to lie
Dr. Thompson expressed his deep concern over the research misconduct in lengthy conversations 19 with Dr. Hooker, exclaiming at one point “ . . . I have a boss who’s asking me to lie.” 20, 21
19 These tapes contain highly personal information about Dr. Thompson and for this reason will only be released as part of due legal process.
20 Legally recorded telephone conversation between Dr Thompson and Dr. Hooker on May 24, 2014.
21 IBID
Lord almighty!
I find myself just astonished at AJW continuously repeating phrases like ‘research misconduct’. ‘covering their tracks’, ‘omission of signiificant findings’, ‘obstruction of justice’, ‘falsiticaton’ and ‘devious strategy’ – and at one point, even defining some of them.
Well, I guess he would be one to recognise fraud when he sees it.
As if that isn’t enough-
a few words form Heckenlively-
‘ the greatest crime in the history of our republic’, ‘ a dark page in science that will be remebered for centuries to come’, ‘the willingness to betray the entire human race’ and
(paraphrase)
Soon to be a documentary courtesy of Andy, please help us fund this important project.
REMEMBERED
One more issue – why isn’t Dr. Thompson a party to this complaint?
Good question Lawrence.
It doesn’t exactly fill me with confidence when the very first thing I notice, on the second page, is this:
I know it’s a typo, but that should surely read “August 27, 2014”, not 2004.
The trouble with that, Krebs, is not just the date. If you carefully read Dr Thompson’s statement, it contains no allegation of misconduct. It is criticism, yes, but he acknowledges that reasonable scientists can disagree.
He also states that all he is complaining about is one element of data: the unadjusted race data.
He says the protocol was not adhered to. But I wonder how common that is in biomedical science, without suggestion of wrongdoing?
Given who’s making the complaint & that Thompson isn’t a part of it, this is merely another PR stunt so Wakefield and company can continue to solicit donations from the faithful.
The real tragedy in all of this are the children who will be subjected to vaccine preventable diseases because of these clowns….
Here’s the rub; the protocol was followed. LBRB posted a copy. Even so, there are times that one must deviate from an initial plan for very legitimate reasons. There is simply no fraud here but you already know that.
Heh:
“We reserve the right to file supplemental details and Exhibits as and when they come to light”
Well, sure, guys. That they seem to think ORI has something to do with this is just bizarre. Then again, between the font and the half-assed legal stylings, maybe I overlooked something.
Ah, it seems they can get involved, although letters from self-promoting crackpots isn’t how it generally works. I’m still looking for an actual intramural case.
between the font
Please tell me it was Comic Sans.
Then…there’s the little matter of Hooker’s retracted study, which reveals those discrepancies and which are the basis for Wakefield’s and Hooker’s complaints about the DeStefano et al study.
Some mighty screwed up thinking processes there.
@lilady – yes, how exactly does one use a “retracted” study as evidence of anything?
The basic complaint made by Mr. Wakefield in his horrific video was that the CDC didn’t follow their protocol.
The protocl/analysis plan states:
“The only variable available to be assessed as a potential confounder using the entire sample is child’s race. ”
The complaint misquotes this as:
“The only variable that will be assessed as a potential confounder using the entire sample will be the child’s race.”
and that’s just the start of the problems.
Lawrence, you could pose that question to Jake. He has a unique ability to explain such things. 🙂
That’s the story of Wakefield.
He saw measles virus that wasn’t there.
He saw colitis that wasn’t there.
He saw a protocol violation that wasn’t there.
I just hope to god there is litigation somewhere over this. They cannot keep him out of it, and once he’s in, he’s done. As we say in England, like a kipper.
Bring it on guys. Give Andy his day in court (well, more like a week).
And (PDF, p. 5)…
In other words, the best they can hope for is a review by the CDC (I can find no record of any explicit funding in RePORTER), solely for the purpose of determining “falsification, fabrication,* or plagiarism.”
Now, what was that about “reserving the right” to keep tossing stuff out? Off to 42 CFR Part 93.
Now, should there be a CDC inquiry,
Yes, a Wakefraud interview.
* “Falsification is manipulating research materials, equipment, or processes, or changing or omitting data or results such that the research is not accurately represented in the research record…. Research record means the record of data or results that embody the facts resulting from scientific inquiry, including but not limited to, research proposals, laboratory records, both physical and electronic, progress reports, abstracts, theses, oral presentations, internal reports, journal articles, and any documents and materials provided to HHS or an institutional official by a respondent in the course of the research misconduct proceeding.”
I don’t know but I hope you’re correct, Brian.That would be both entertaining and enlightening,
IMNSHO, he seems to be turning into Gary Null:
suing reasonable people ( and losing), petitioning/ suing governmental agencies ( and losing), making ridiculous documentaries in order to disseminate his crankish beliefs ( that earn a little).
OK, I’ve give him that he’s younger, has a real degree and is better looking BUT he’s just as much of a loon.
“In other words, the best they can hope for is a review by the CDC ”
Which CDC likely can not do while a whistleblower investigation is in place. A whistleblower investigation should be done by someone outside CDC. Possibly outside HHS.
And the whistleblower investigation will likely moot the complaint.
It’s a publicity stunt.
American Typewriter. Cambria is also embedded, but I’m not inclined to hunt for it.
@lilady – interestingly enough, Jake seems to agree that this is merely a publicity stunt….
The WPA only comes into play after a prohibited personnel practice is alleged.
Umm….
Funny, you wouldn’t know that from looking at his CV (PDF).
American Typewriter.
Ah. Nothing signifies old-school hold-the-front-page green-eyeshade whisky-bottle-&-overflowing-ashtray journalism like preparing everything on a word processor and then pretending that it was typewritten.
I’m somewhat confused by the reference to “Redding University” in The Letter. (Chuckle).
Redding is an online university. I thought he was at Simpson? Anyone know what this could be about. I believe I have something about to be published on these gentlemen and I like to keep abreast.
There are some rules, but 34 pages of single-spaced American Typewriter – which isn’t monospaced – is simply painful.
“Like the many fonts designed to resemble old-fashioned typewriters–Courier, American Typewriter, Toxica–the effect amuses for a very limited time, leaving cumbersome words that are difficult to read and lack all emotion.”
This is also dishonest:
The DeStefano IOM presentation, which Hooker et al. themselves include as “Exhibit 19,” makes clear reference (PDF) to the Georgia implementation of the IDEA requirements (slide 36).
Simpson University is in Redding, California.
Yes, so the authors of The Letter didn’t know the name of the university where Hooker worked, or what?
I can’t find anything about Hooker at Reading University. His actual position is an Associate Professor at Simpson University in Redding, CA.
So unless there has been a recent embarrassing event that has seen Hooker move from Simpson to take up an Assistant Professorship at Redding, I think this is a colossal cock-up on Hooker’s part.
Fancy getting both your job title and place of work wrong in a letter to the CDC.
Yes, so the authors of The Letter didn’t know the name of the university where Hooker worked, or what?
They got it right in footnote 4, but giving him a promotion to assistant professor, as Chris noted, is very, very slipshod.
I don’t get what kind of lawsuit they think they can bring. To the best of my understanding the Federal Torts Claims Act bars misrepresentation suits & ncvia would bar a design defect claim.
Narad, any thoughts?
Dorit
Makes
Make that does not allow, rather than bar. And ignore the last comment, fighting my phone.
And what is this:
The Group. The Paper, The Hypothesis, The Analysis Plan..
German?
I think the notion that there was a lawsuit lurking in the wings was a simple misreading of the complaint. They want ORI to take it up, hence all the blathering about the six-year limit and so forth.
As for the FTCA, yah misrepresentation seems like it would fly, despite mostly arising in a commercial context. Discretionary activity might also work, given that the paper was subject to internal review.
BTW, is this James Moody the same one who was representing Linda Tripp?
^ Seems he’s been around for a while.
^^ His 2005 “whistleblower” “smoking gun” is, ah, less than impressive (PDF).
Why did Andy Wakefield sign for Jim Moody, and why is there no physical address on the letter?
Have a look at Hooker’s CV (see Narad’s link c. 134)
You’ll find the same sort of thing there, but inconsistently. Overall it’s a CV that desperately needs to be edited for consistency of style and for other things such as sentence fragments masquerading as sentences. And yet he offers report writing and editing services. Apparently the guy is pretty well qualified in his areas, but his CV makes him come across as sloppy.
Maybe it’s just my bad attitude, but I’d be inclined to file any CV wherein I found an admission to a performance piece (Presentations, #2) with Bolen T in the circular file.
No scanned version? (Cf. Hooker’s, the line weights of which remind me of Gimpish automagic path tracing.)
To obscure the fact that it was sent by Wakefraud? I’m ambivalent on the likelihood of his being familiar with the term “per procurationem” on his own.
^ Nice catch, BTW.
IMHO, Lawrence has this pegged as a publicity stunt. Huge chunks of the letter are a narrative supposedly related by William Thompson, yet Thompson himself does not confirm any of it, nor do his previous public statements. Throughout this narrative are select fragmented quotes allegedly from Hooker’s recorded conversations with Thompson. The quotes are so sparse, we can guess Thompson actually uttered those words, but we have only Hooker and Wakefield’s word that they are representing the context properly.
Unless Thompson himself comes forward to say, “Yes, I said that about that. The letter is an accurate representation of my conversations with Brian Hooker.” or Hooker releases full copies of his original digital recording files to the public, there’s no reason to think the narrative in the letter is accurate. I doubt Thompson will break his silence voluntarily, especially since his ‘priest’ has violated the confessional by cherry picking quotes where Dr. Thompson refers to himself as “delusional.” Of course, it was only Hooker who claimed a confessional type relationship with Thompson. Thompson himself has said nothing of the sort.
If this was anything but a publicity stunt, why would you divulge that your Whistleblower had become “delusional” before he even spoke to you? Wouldn’t that undermine any testimony he might give in a court of law? “Dr. Thompson, how do you know that your recollections of events are accurate, and not the product of your mental distress?”
Maybe someone who knows the law could explain whether this letter could ever wind up in a court of law, material to Wakefield/Hooker suing someone, or someone suing them. I would guess, if so, that Thompson could/would be subpoenaed by one party or another to verify the narrative in the letter, and that ultimately the original recordings would be subpoenaed as well. Yes?
My guess, then is that such a lawsuit will never happen, just as my guess is that Hooker will never release the recordings voluntarily. For doing so will make it obvious that they are greatly exaggerating, mischaracterizing, or just outright lying about what Thompson said, and the proof is the highly selective audio editing in the videos AMC has already put online.
In gambling terms, they’re bluffing, and if anyone calls the bluff I guess they’ll fold.
If they had any cards, wouldn’t they play them now? (sincere question; anybody got a plausible explanation?) If they’re still BFFs with Thompson wouldn’t he issue at least some hint of verification? If any part of the recordings could put any of those short quotes in a context even consistent with the narrative in the letter, would H&W release those selected longer segments now?
One particular grammatical ambiguity caught my eye:
What this language implies is that Thompson had some direct exchange with Wakefield, that WT sent documents directly to AJW. But it could just mean that Thompson supplied documents to Hooker and Hooker only, which Hooker then passed on to Wakefield. That distinction strikes me as a pretty big deal, and if I was Andy Wakefield, and William Thompson had indeed sent me documents directly, I’d be damn sure than was unambiguously stated in my letter of complaint. From what Brian Deer says about AJW — and who knows Wakefield better? — suggests he’s way too smart to let an opportunity to pad his credibility slide by, and he’s more than slick enough to construct a clever phrasing that implies more than he’s got, but doesn’t actually pin him in a lie. (‘Well we meant the documents were provided to the team of BH & AJW which in practice just meant sending them to Brian.’)
If you’re still here BD, what do you think? Publicity stunt, or an actual thing?
Do we guess from the fact Hooker’s school and title are mis-identified in the text that he wasn’t much involved in drafting the text, that the letter was written by attorney Moody based on discussions/exchanges with AJW?
As ChrisP notes, the Simpson website lists his job title as Associate Professor of Biology. His CV, however, says Assistant Professor, but it’s dated November 2012. What this means, for all the not-Americans, is that (assuming Simpson is a normal accredited college) Hooker has recently advanced to Tenure, and now has lifetime job security. Promotion and tenure from Assistant to Associate is a big deal, and it is inconceivable that Hooker would not correct that, AND the name of the school, if he were paying attention at all.
However, Moody, as an attorney, and AJW as a Brit, wouldn’t know the difference between an online diploma mill and a Christian college with a real campus, sports teams 1200 resident students, ranked #153 out of 236 Four Year Colleges in the US by guidance counselors, tied with Alma, Burlington, Centenary, Lycoming and Ripon.
In short, a real school, if a somewhat undistinguished one, but the fact Hooker has tenure there gives him MUCH higher status than “Assistant Professor at Redding University” and the fact the letter totally mucks up his crednetials is telling of something, not that I know what.
OK, so apparently lilady and Science Mom can’t comprehend the point of a post even if ScienceBlogs would let me put it in 120 pt. type with a Blink tag, and are incapable of responding to an argument by any other means than filtering for some component part they find offensive, running that through their own unexmined moral biases, and ripping off an ad hominem attack like They And Only They Know What I REALLY Mean.
I shall repeat the point(s) here, in hopes someone who actually gives a crap about preventing another Spourdakis or Stapleton case, might share some ideas:
1. The point is that Stapleton’s trajectory was shaped by an ideology of parenting in general that validates Hero, Warrior and Martyr momism in ‘normal’ parenting, to the point where folks are unable to see when that crosses the line into pathlogy.
2. The point is that hero/martyr mom-ism is encouraged by conservative stereotypical gender roles where men are breadwinners, and women are totally responsible for the domestic side of the ‘partnership’.
3 The point is that the right-wing ultra-individualist ideology repeatedly championed by choruses of influential public voices, excuse everyone with any measure of power and privilege from responsibility for contributing to dysfunctional social systems and warped cultural norms.
4. The point is that we have do not have proper mechanisms to keep this from happening again, no effective way to intervene with a mom who might be so stressed she’d harm a child, but could be brought back on track, no way to get the kids away from full-on NPD nut-jobs, who are likely to damage them in one way or another sooner or later as they’re basically untreatable.
5. The point is that Andrew Wakefield, pond scum that he may be, did not create the pathologies that killed Alex Spourdakis and almost killed Issy Stapleton. Kelli Stapleton had no connection to vaccine mythology, and if that narrative hadn’t been available to Dorothy Spourdakis she would have been on some other form of woo blaming something else for the ‘destruction’ of her should-have-been-perfect son.
6. The point is that a history of being an abuse victim is the strongest predictor for both NPD and many forms of child abuse. Shit rolls downhill, and we’ll never be able to fully protect ASD kids until we address the larger issues of child abuse that figure in messing up the mom’s heads.
7. The point is that we need to take responsibility as a society for helping kids like Issy and Alex, and that means addressing our own roles in the systemic social forces that bend moms out of shape, and leaves kids with them after they get bent.
8. The point is moral condemnations of The Evil Mom, “the guilt is hers and hers alone,” are rationalizations for everyone to wash their hands of any responsibility for anything of this. Whether you as an individual actually DO something about the problems is irrelevant. You are circulating and validating the discourse of societal neglect.
If anyone here can demonstrate they understand the point, I welcome commentary and reasoned critique. If you can’t bring that, don’t waste your time with a reply.
Sadmar,
I don’t in a general way disagree that a modern progressive society must take some protective action vis a vis kids in general, and whilst the guilt as far as I’m concerned
belngs to the perpetrator, perhaps some responsibility lies with society in general.
But you don’t have to be ultra right wing to have doubts about how much and indeed how exactly such interventions are to take place. Are you suggesting that prospective and/or new parents should be subjected to some sort of pyschiatric examination? What counts as crazy enough to stop someone having kids? Are my political views to come into this? Religious views? Is a belief in crystal healing enough to bar me from bringing up my kids? Do we have to fill out a form asking if we have been abused as a child, and if we have, is a consequence of that some intrusive perpetual interference from the state in our child rearing (sounds like almost an extension of the abuse imho)? I’m all for the medical profession by and large, but tell me that some random person in a white coat is about to ‘assess’ my suitability for parenting and I’m off to get me gun
(metaphorically, unless some ultra XXX group has taken over,in which case I’ve already got it ready.)
It sometimes seems here in the UK that our social services – who do seem to have quite extensive powers
of intervention – are populated by fairly mediocre people (of necessity btw – if you have a largish system, you simply
cannot expect to staff it purely with the best and brightest,even if the best and brightest are actually wanting
to do this work) some of whom enjoy the experience of dictating to others or the exercise of power in general,
who spend a lot of time on the ‘low hanging fruit’ – people with slight eccentricities or lowish IQs, people who are
either amenable to the system (and therfore probably don’t need it) or unable/afraid to fight it (and therefore open to
abuse by it) whilst peadophiles and abusers dodge the system and run riot. That is an exaggerated view, and which I apologise immediately to anyone I have just insulted, but it is not entirely without some foundation.
So whilst I think there is always some discussion to be had, its always easy to criticize and say in this specific case
various things should have happened – but designing a generic system where those things do actually happen when and only when it is appropriate seems very, very much more difficult.
Perhaps you would like to sketch out such a system?
If you check carefully, both of Wakefield’s signatures are scans inserted into the document.
Oh and also – since you seem to suggest that some people (incurable NPD nutjobs for instance) should pretty much automatically have there kids taken away from them – why not just go straight for enforced steralisation of such people?
Much easier in the long run…
And the saga continues…
https://www.respectfulinsolence.com/2014/10/23/brian-hooker-and-andrew-wakefield-send-a-complaint-to-the-cdc-about-its-vaccine-research-everyone-yawns/
Running off your mouth again, about situations and individuals you know nothing about, sadmar?
Tsk tsk, imagine that this individual seems to think (s)he knows anything about the Spourdalakis and Stapleton cases and the culture of “warrior” moms who kill their disabled children.
Furthermore, you insulted an individual who has earned her place as a science blogger, and the respect of the science and autism communities:
http://en.wikipedia.org/wiki/Emily_Willingham
JCL:
I”m not a policy expert, and not competent to sketch out a system by any means. I’m just trying to say “here are some issues to think about.” And I’m not qualified to even put proposals on the table for discussion, so I’m not suggesting anything.
When I say we have no mechanisms to keep these tragedies from happening again, I’m not about laws or policy or bureaucracy. I’m talking about the whole social ball-of-wax.
The CDC does have a (vague) policy concerning bad-faith complaints (PDF):
“If the Investigation Committee determines that the complainant(s) raised bad faith allegations, the Committee will recommend appropriate administrative actions that CDC/ATSDR should take consistent with its policies and procedures.”
I don’t have time to respond point by point to your bloviated, grandiose drivel about topics which you clearly don’t have a firm grasp of Captain Condescending.
You are still excusing murderers by blaming so-call non-existent external resources that could have prevented these murders. Have a read here know-it-all: http://www.blogher.com/changing-conversations-when-parents-murder-disabled-children
http://www.squidalicious.com/2014/09/amplify-this-dont-murder-your-autistic.html
You obviously don’t seem to know or care what Wakefield’s role is. Even though Wakefield wasn’t directly involved (or apparently so) in the Jordon and Stapleton cases he is tangentially responsible. Wakefield is the daddy of the “autism is caused by vaccines”, “autism is a tragedy” and “autism can be cured” memes which helped to launch vile, bigoted and harmful groups like Autism Speaks, TACA and ARI (which preceded Wakefield but morphed into a curbie org after Wakefield). Wakefield helped to initiate the curebie cottage industry to “treat vaccine-damaged, tragic autistic children”.
These murderous women had resources available to them but they were all combative and too resistant to avail themselves. This is the same pattern that E demonstrated and thankfully her son is safe from her. I implore you to read the links I provided; there is no excuse for murdering “a difficult” child. Ever.
I would like to add to my comment to sadmar. The U.S. and states are pitiful when it comes to mental health issues. There isn’t adequate funding for community-based group homes and other long-term living options; there isn’t funding for education/work programmes and organisations like the AMA and AAP sit on their hands and do nothing about the abuses heaped upon autistic children at the hands of their own. This is just a short list of problems. However…
Even with the most stellar programmes in place, there will always exist parents who through either personality defects or actual pathologies will harm their children. E is a good example of this so once again, external services or lack thereof is not an excuse for these people.
Science Mom:
You implored me to read the posts at the links you provided. I took that as a civil request, ignored the thoughtless and hurtful insults, and followed suit.
——-
Both links were to blog posts by Shannon Des Roches Rosa. I also read another related post by SDRR on BlogHer, and the outline of her work on the ‘About’ page of Squidalicious.
On the whole, I agree with the central points of everything I read, though I did have caveats about issues that struck me as secondary.
In “Changing Conversations: When Parents Murder Disabled Children” DSRR emphasizes parents of ASD kids need to be involved in supportive and child-positive communities. I couldn’t agree more I have already suggested that insurance needs to cover psych services for adults faced with extra-demanding parenting situations, I specifically mentioned support groups, and even speculated they should be made mandatory.
In “We Cannot Excuse Parents Who Kill Autistic Children” SDRR emphasizes the selfishness of martyr moms, which is exactly what I was talking about in #157 — it’s not like selfishness is something our society actively discourages. She also advocates interventions by ‘outsiders’ seeing signs of concern between a parent and an ASD child. Which I suggested myself in #81 and #157 strongly enough to draw caveats from JCL.
Now, to my points of dissent:
This paragraph from “Changing…” is all over the place.
Huh? How is it dangerous to warn that parents who don’t get enough services might harm their children when you are advocating parents who think they might harm their children to seek the services of support groups? I don’t need a cheat sheet to recognize ‘Many parents who harm their children have access to appropriate services, therefore lack of such access is never a significant factor in cases of abuse’ is a glaring fallacy.
It would seem there’s also a question here of exactly what services are available to troubled parents in specific cases, and how effective those services actually are, both for the kids and the parents.
I noticed something in the New York Magazine article on the Stapleton case that seems to have escaped the author’s eye. While Kelli Stapleton claimed to have purchased the grills she used to poison Issy with CO on the Sunday following Issy’s return home from the Great Lakes treatment center, following an incident that day where Issy attacked her in front of witnesses at a school track, the receipt for the grills shows they were purchased on the prior Thursday, one day before Issy’s return. That would be the same day the school superintendent told Kelli the school would not accept Issy as a student, even with 1:1 support, as “parents at the school were worried about having Issy in classes with their kids.” The administrator’s told Kelli she was so well-prepared to deal with Issy, she should just homeschool here. As Stapleton recounts her story, this certainly seems to be the moment she cracked.
Is it unreasonable to wonder whether Kelli might not have harmed her daughter had the school admitted Issy? We’ll never know. Perhaps the attack at the track would have put her over the edge regardless, and that’s why she projects that as the date of her ‘murder/suicide’ plan. Or perhaps that denied service was just what she needed to hold it together.
Finally, right in the middle of the quote from “Changing”, there’s the casual conflation of “explain” and “justify”, as if they were connected, if not equivalent, which they’re not. This strikes me as getting to the heart of the problem in the discussion.
In “Cannot Excuse” SDRR quotes Kristi Sakai:
The following are not rhetorical questions: How do we consider ASD children to be fully human if we also take them to be so innocent as to be unaccountable for any of their actions? Who among us DID choose our neurology, our challenges, our parents or created the conditions of our parents’ lives? How are some fully human persons fully culpabale agents, and others not at all?
Let’s set aside the question of whether certain claims in the Stapleton case are false or exaggerated, and consider this as a hypothetical: a woman with a personality disorder resulting from childhood abuse finds herself raising a child who physically abuses her, knocking her unconscious on multiple occasions. She did not chose her neurology. She did not chose to be abused by the people who were supposed to protect her. She did not choose to have a child who gave her multiple concussions. I’m inclined not to judge Issy Stapleton for her violent tendencies. I’m inclined to say she deserves love and support. I’m inclined to think she deserves humane efforts to improve her situation by reducing the likelihood she will harm her caregivers. In line with these things, her behavior ought to be understood and explained. So how is it monstrous to suggest the hypothetical mom deserved to be loved instead of abused, to consider that her abuse might help explain why she abused her child, and imagine that understanding these things might help prevent a future attempted murder of an ASD child?
In the ‘Squidalicious’ post, “Amplify this: Don’t murder your autistic kids” SDRR writes regarding coverage of the Stapleton case:
My response is 1) empathy is not the same thing as identification, and 2) it’s not mutually exclusive. I wouldn’t say I identify with either Kelli or Issy Stapleton. Yes, I have a degree of empathy for Kelli. But there’s no “rather than” involved in that. I have more empathy for Issy, and I do want “to put victims like Issy first.” In fact, the central point of the two BlogHer posts is exactly that putting potential victims like Issy first involves a degree of empathy for potential perpetrators, parents who might turn into someone like Kelli. In “Cannot Excuse” SDRR writes:
That sounds like empathy for troubled parents for the purpose of putting the kid’s welfare first. Seems right to me. However, for SDRR all attempt at understanding stops once a parent harms a child. That makes no sense to me. How do we prevent harm if we don’t understand what leads to it? How do we understand it without exercising enough empathy to get into the warped mind of the abuser? That’s not identifying or excusing. It’s trying to learn things that will better help us to protect all the Issys and Alexs down the road.
Here’s some feedback from a parent who faced difficulties with a violent child, excerpted from a comment by ‘averagemom77’ on the New York article on the Stapleton case:
I’m certainly in no position to condemn averagemom77 for feeling she understands the situation Kelli Stapleton might have faced. I haven’t faced anything like that, and I don’t know how I’d react. But I have faced my own breaking point, caught a glimpse of a dark place where horrible acts don’t just look reasonable, they look like the only option. And yes, unless you have peered into that darkness yourself, you have no clue what it’s like. You are the lucky ones.
I also completely identify with averagemom77’s difficulty navigating an overload of contradictory advice, all equally credible to her perspective. I have experienced only a mere fraction of anything like that, and only in relation to problems considerably less serious than providing care for a disruptive special needs child. And even in my less extreme circumstance, I felt utterly debilitated, utterly lost.
SDRR writes: “We must do our best to support and understand [our kids] and their autism, and stop torturing them by trying to turn them into the non-autistic child they will never be…” I couldn’t agree more. In practice though, that may be easier said than done. I don’t see how we can discount the issues raised by averagemom77. A parent may indeed be fulling accepting of their child’s ASD, have no wish to ‘fix’ a person who is not, in fact, ‘broken’. That said, like any parents who want their children to live full, happy lives, they will want their kids to receive education, grow, mature on their own terms. But they will have no idea what those terms might be, what their kids can and can’t achieve.
Specifically in the case of kids with violent tendencies, it’s unreasonable to imagine a cruel world will be as accepting and understanding of that behavior as it should be. Is it unreasonable, then, to think going to a ‘regular’ school would have benefited Issy Stapleton’s development? Is it unreasonable to think that some form of therapy that could have moderated her behavior would thus have been valuable to her, if only by enabling her to get past prejudices that weren’t going to change in the short run? Among the sins of the warrior moms are the denial of proper therapy to their children, as they do not want their kids to become independent, but want to keep them as accessories to their own ego-tripping martyrdom. Can we blame parents who want their ASD kids to be independent if they’re confused about what to do? If amidst all the shouted claims they can’t tell the difference between things that might help more than hurt, and things that might hurt more than help?
Shannon Des Roches Rosa describes her goals as to help spread understanding of autism so we will not be afraid of it, to encourage us to treat ASD people with the respect they deserve, to understand they can live a full, happy life and are no one’s cautionary tale, to autism is a neurological difference rather than a disease, and thus to foster a greater acceptance of autistic people. That’s what I want. I assume that’s what we all want. I would think reasonable people might disagree about exactly how to get there.
——–
Except Science Mom seems to think she has all the answers, a monopoly on rectitude so sure anyone who dissents from her point of view by one degree is “bloviating drivel”. After conveniently attributing to be thinks I not only did not say, but explicitly decried, she refers to me as a condescending know-it-all. I’m just shaking my head. Christ on a cracker! Look in the mirror.
I don’t ever recall anyone posting such opinionated and provocative comments about ASDs, the mindset of parents who have children diagnosed with ASDs, the long history of advocating for children with ASDs (and other developmental disorders) and parents who murder their disabled children, who was so ignorant about these subjects.
Orac has a very long history of posting well researched articles on these topics, yet it seems as though sadmar has not taken the time to read those blogs.
Rather that providing your extremely uninformed opinions about these topics and your personal complaints about your tales of woe and you own history of your mental health issues, I suggest that you, sadmar, check out Orac’s prior posts and Brian Deer’s entire series of articles about Andrew Wakefield’s activities in the U.K. and Wakefield’s activities once he moved to the United States.
As I stated upthread; as far as we know Wakefield and his biomeddling mommie warriors were not involved in the Stapleton case, but we do know Wakefield and the biomeddlers were heavily involved in Alex Spourdalakis’ brutal murder by his mother and his “godmother”.
Your ignorant-of-the-facts insensitive remarks are an abomination:
https://www.respectfulinsolence.com/2013/06/14/autism-biomed-and-murder-of-alex-spourdalakis/
Sadmar, if you want to be answered civilly then lose the passive-aggressive condescension; if not then don’t whine when you’re called out on it. Secondly, brevity. Learn what it is and you’ll find that your comments will be more thoroughly responded to. Lastly, this is about all I need from your (yet again bloviated, self-righteous drivel):
You still don’t get it. No matter how many pejoratives you hurl at murderous parents, you still don’t seem to grasp there is no “but” when it comes to murdering or attempting to murder your autistic child. Empathy for the parent who harms their child is lessening the life of the victim. People like you and your attitude towards autistics are part of the problem, not the solution.
Science Mom, I’m not sure how trying to understand why the criminal did what she did and how to keep that from happening again lessons the life of the victim, and I’m not sure how you can do that without empathy.
None of this post should be interpreted as an endorsement of horrible things or a suggestion to to do them.
Sadmar is a concern troll who reverses the old parable and asks you to remove the [imagined] mote from your eye before you tackle the beam in the eye of the anti-vax apologists for Wakefield and his acolytes.
The irony is that Sadmar is blind to their own faults and feels entitled to criticize everybody else from a false position of assumed superiority.
Because you are saying that you can place yourself in the murderer’s shoes and see why they would murder their “difficult” child. The child is the only victim, not the parent. Empathy will not prevent these tragedies, only encourage them.
You’re right, I can, and I don’t think that is a bad thing that I can. It doesn’t mean I think she made the right choice, or that it is that choice that I’d hope I’d make in the same situation. It doesn’t mean that I encourage the behavior in any way.
It does mean that I don’t think she’s some incomprehensible monster, but a flawed human just like the rest of us. A lot of people make a lot of choices I wouldn’t make, but I feel like I understand their motivations most of the time. I’m just not seeing that as a bad thing, or encouraging people to do things that I wish they wouldn’t do.
As far as I can see, there are only thre ways to react to something like this:
1) Do nothing
2) Do the social policy equivalent of woo in the hope it will make a difference.
3) Try to understand the causes and motivations and figure out what would be a worthwhile intervention.
The third option seems like the only one that would prevent tragedies to me, and it requires understanding the person.
The greatest slack I could cut her would be to conclude she’s a comprehensible monster, but still a monster and far worse than simply a flawed human like the rest of us.
justthestats: Did you actually open up the link to Orac’s blog that I provided to satmar at # 168 above?
You do know, don’t you, Wakefield and the biomeddling “Autism is Medical” crew interfered with the care Alex Spourdalakis was receiving in the hospital.
You do know, don’t you, that Age of Autism was knee deep in publicizing Wakefield’s and the “Autism is Medical” meddling and provided no help for the murdering mother and the godmother, who now await trial for the premeditated brutal murder of Alex?
Issy Stapleton’s mother had a huge support network, thanks to her blogging activities, yet she planned and executed the attempted murder of her child:
http://leftbrainrightbrain.co.uk/2014/09/13/when-a-child-is-killed-by-a-parent-the-word-but-does-not-apply/
In other antivaccine news, there’s a dandy piece making fun of Attkisson’s paranoiac hacking fantasy.
@JGC:
I guess I wasn’t clear. She’s absolutely a monster. She’s also a flawed human. The distinction was supposed to be between human and non-human, really.
The evidence is pretty good that humans aren’t capable of predicting what they would do in extreme situations in advance, and even worse at predicting what other humans would do, so I still maintain it’s better to try to keep people from being in them in the first place. Our mental health system in the US is not very good at that.
@lilady:
There is a quote with from the comments in that article that I agree with 100%. After I copied and pasted it, I noticed it may very well have been written by you. I decided to keep it anyway:
Again, I agree with that 100%.
I had read it before, and I reread it again after you mentioned it. Sickening, really.
I do, and that’s why I think in the all-too-likely case that they don’t really believe what they are peddling they have some of his blood on their hands.
There is definitely pathology going on there.
Sadly, a common symptom of SMI is not recognizing of feeling you’re able to access the support you need. Besides, that network may have been large, but was the support deep? It doesn’t sound like she felt like she had better options. I’m sure someone would have stepped up to the plate if they had realized the seriousness of the situation, but unfortunately that’s not what happened.
Issy Stapleton, if you ever read this, realize I feel terrible for you. What happened to you must have been unimaginably horrible. I really do hope that people will that the time to understand what happened so that someone will figure out what can be done to keep it from happening again.
Has anyone gotten around to defining empathy? I ain’t givin’ it up for, y’know, Dorothy Spourdalakis’s cat slaughter.
Retraction Watch has helpfully supplied one.
[…] physician, and probably, in the eyes of the antivaccination cult, is in the pay of Big Pharma), the mysterious snark-meister Orac, and Steven Novella (another physician, so insert Big Pharma payoff meme […]