The Great Autism Rip-off

1 Jun

I had to pinch myself to check I was actually awake and not dreaming when this landed in my inbox this morning.

This is a truly excellent piece of journalism on autism and the growing CAM (Complimentary and Alternative Medicine) industry (Small Pharma?) that surrounds it. And its in the Daily Mail.

I can imagine many people choking on their cornflakes this morning. A little JAB of reality.

In this burgeoning market, private doctors and clinics have sprung up across the UK claiming they can treat or even ‘reverse’ the disorder.

Recent research published in the Journal Of Developmental And Behavioural Paediatrics found that a third of parents of autistic children have tried unproven ‘alternative’ treatments.

Worryingly, the study claims one in ten has used what the experts class as ‘a potentially harmful approach’.

I’d personally say the figures were a little lower than that now. As MMR fear in the UK has tapered off, parents turning to CAM has (I think) dropped off. One only has to take a look at the slackening number of posters on the various anti-vaccine pro-CAM autism websites such as JABS to see this in action.

Parent to four autistic children, Jacqui Jackson explained how many of us try something silly before coming to our senses:

‘I bought enzymes and supplements from America, which cost a fortune. I even paid thousands for a special mattress, blankets and pillows with magnets sewn into them that the sales people promised would do wonders but, of course, didn’t work.

‘Autism is seen by some people as big business.

‘I meet parents who want a cure and spend money in the hope they’ll have a normal child. I try to warn them that there is no evidence any of these things work, but they’ll often go ahead.’

I hold my hands up and admit we tried a bit of quackery – fad diets and even homeopathy (its all on this blog somewhere) – because we didn’t know any better basically.

In his exposé the Mail reporter claimed to have an autistic child so he could ask some CAM autism practitioners over here what to try:

During my investigation, I was recommended expensive tests, vitamin supplements and special diets, ointments, suppositories and injections to ‘flush out toxic heavy metals’, bizarre-sounding high-pressure oxygen chambers and intravenous infusions of hormones – and told in each case that they could bring about a complete recovery from autism.

Yet medical experts say there is no evidence to support their claims, and in fact many of the treatments I was offered were potentially harmful, and even possibly fatal.

The experience left me disturbed at the lack of regulation surrounding these practices.

Its nice to hear someone from the mainstream media stating what some of us have been stating for the last few years!

The report mentioned how:

This week, new legislation aimed at protecting consumers from ‘rogue traders’ came into force, prohibiting businesses from making ‘false claims’ that a product is able to cure illness.

Its about time. Hopefully, some of these CAM artists will be investigated under the auspices of this new law.

The reporter went to see a few DAN! registered UK docs. The experience wasn’t pretty. One made outlandish claims for Secretin but didn’t ask for any medical records. One pushed chelation and never mentioned Tariq Nadama. Another said the reporter would have to commit to a year of rubbing in a skin cream chelator of dubiouis eficacy. Dr Lorene Amet failed to disclose that she wasn’t actually a doctor of medicine (its not uncommon for DAN! ‘doctors’ to not actually be doctors).

Its a highly revealing piece of a grubby, grasping little world that preys on the parents of autistic people. Thanks are due to the Mail for reporting on this so accurately and thoroughly.

17 Responses to “The Great Autism Rip-off”

  1. Ms. Clark June 1, 2008 at 06:57 #

    I hope the malicia don’t go after this reporter the way they usually do. It’s an amazing piece of investigative reporting.

  2. Melody June 1, 2008 at 08:23 #

    What does CAM stand for? Cure Autism Magically?

  3. Kev June 1, 2008 at 08:38 #

    oops,sorry – Complimentary and Alternative Medicine.

  4. Joseph June 1, 2008 at 14:09 #

    What I felt was missing from the report is an account of how the Jackson children are doing these days. Also, the reporter could’ve made absolutely clear how wrong David O’Connell is to push secretin.

  5. Les Feldman June 1, 2008 at 17:56 #

    Yes, it is a daring article. I have been trying for years to warn about the relationship between increasing average paternal age and some offspring who are autistic or schizophrenic and getting nowhere because of the business of autism and the powers that be. Yesterday there were two articles that were breakthroughs. The rip off and this one. http://www.telegraph.co.uk/news/uknews/2059130/Scientists-reveal-dangers-of–older-fathers.html

  6. Lisa June 1, 2008 at 20:45 #

    I blogged about this one as well… of course (as per normal LOL) my take was a bit different, but I also thought it was a great article.

    Best,

    Lisa
    http://www.autism.about.com

  7. Lisa June 2, 2008 at 12:50 #

    What does the writer suggest parents do, sit around waiting for allopathic doctors to come up with a solution. I think most parents would try anything at any cost to help their autistic children. How about following some of these children through the treatment process to see if there is any improvement. My neurologist told me to try anything as traditional medicine could not offer me any help with the vaccine damage I suffered from a flu vaccine.

  8. century June 2, 2008 at 16:40 #

    Just a small point to add:

    (using your terminology) it is possible to be anti-vax AND NOT a CAM user

  9. Ms. Clark June 2, 2008 at 19:35 #

    Autism is a neurodevelopmental disorder just like Mental Retardation is a neurodevelopmental disorder. Parents of intellectually disabled (mentally retarded or learning disabled kids) do **not**, (read this slowly) do **not** go to allopathic physicians looking for a cure for their children’s neurodevelopmental disorders.

    The idea that an allopathic physician (much less an insane or greedy quack) could treat “autism” is patently ridiculous.

    Now, say you’ve got a kid with Down Syndrome or Williams Syndrome. Do you take your kid to the doctor for the physical problems that frequently accompany these disorders?

    Of course!! Parents do it all the time. But where did this ridiculous notion come from that physicians are supposed to treat autism or autism plus MR?

    It came from idiot quacks who pretend that they can cure autism with their pills and potions for a high price, generally. And whereas for the most part kids don’t go from being obviously mentally retarded to obviously normal-intelligence, autistic kids can go from obviously autistic to looking normal with time. Just time, plus parenting and education and acceptance and love from friends and family. So in the case of autism you have thieving MDs and others taking credit for changes that would have happened anyway without their “interventions” and left the child without the side effects of some of their dangerous or just plain stupid therapies.

  10. Patrick June 2, 2008 at 19:36 #

    I am glad this article is out there.

    My father was (maybe still is) one of the folks that are a bit susceptible to charlatans claims. He was chelated for arterial blockages and still ended up on the operating room table for a multiple bypass.

    I am of the opinion that even dietary or nutritional supplements and all products meant or claimed to help a person or be applied should be thoroughly evaluated before being made marketable for human use.

  11. Margaret Romao Toigo June 2, 2008 at 22:43 #

    Lisa asks, “What does the writer suggest parents do, sit around waiting for allopathic doctors to come up with a solution.”

    A solution or a cure? Because while there is no cure, there are already plenty of educational solutions that don’t involve questionable treatments.

    Lisa writes, “I think most parents would try anything at any cost to help their autistic children.”

    While I am sure that such parents would be doing so out of love, trying anything at any cost seems like a reckless approach.

    Help or cure? Because there is plenty that can be done to help autistic children, even if they cannot be cured.

    I have found that it has been most helpful to treat my autistic children like children, and they seem to be making remarkable progress in both behavior and cognition.

    Of course, I also have them enrolled in exceptional education programs because children need to go to school and they don’t fit into mainstream classrooms. But after school, they get to do the usual after school stuff — television, video games, playing outside, swimming, etc. — because that’s what all my kids do, whether they’re autistic or not.

    Lisa asks, “How about following some of these children through the treatment process to see if there is any improvement.”

    How would anyone know if it was the treatment process that caused any observed improvements, or if it was some other factor, such as schooling, traditional therapies, or maturation?

  12. Kev June 3, 2008 at 06:30 #

    Century – no idea, don’t see why not.

    Lisa – as Margaret says, there are plenty of things you can do that will actually help a child. Using them as a guinea pig is not one of them.

  13. century June 3, 2008 at 07:36 #

    “Century – no idea, don’t see why not”

    I said “it is” not “is it?”

  14. Kev June 3, 2008 at 08:02 #

    Righto.

  15. Recovery is possible! June 7, 2008 at 08:42 #

    What a bunch of doo-doo. Autism is curable. I have 2 “autistic” diagnosed children. One has recovered, one is recovering. I didn’t use Dan! or any organization yet for my children, though I have the highest respect for Dan!, their work, and their mission. They aren’t fringe as the article claimed and they have led the way to a great many advancements and movements in autism awareness and treatment. As a parent of 2 autistic kids I can tell you straight off that the “respected” medical industry, including our pediatrician, has given us absolutely 0 support, has done 0 tests, and administered 0 treatments even for health concerns such as severe bowel problems. Even genetic tests were not offered to rule out fragile X and other issues they can identify. We actually had to enroll in research studies in order to obtain genetic tests and MRIs and we are fully insured. After the initial autism diagnosis’ we were entirely on our own for medical and nuerological concerns. The medical industry is in the dark ages when it comes to autism. Go ahead and continue your blind faith in doctors and health care -the respected medical industry has absolutely zilch to offer, even tests that could provide clues about your child’s condition or deficiencies. This is a neurological disorder, and as such should be treated as one and every test and treatment must be considered.
    You think that was a good article because the reporter presented a hypothetical scenario to various practitioners who gave treatment advice based on the stated description of the patient? Were the practitioners supposed to detect the ruse and sniff out the lie and refuse treatment? Just as “respected” medical doctors give second and varying opinions and approaches as to diagnosis and treatment of disease, so to were the practitioners imparting their advice based on the phony child’s description.
    The article relied heavily on the statements of one Dr. who says there is no cure and there is no proof that any of these alternative therapies work? Firstly, please apply that same logic to chemo and radiation and then report on those cure rates for cancer. By that logic, the “respected” cancer treatment industry ought to be shut down. One kid dies from chelation or some other autism treatment and that is supposed to indicate foul play? I don’t know the circumstances of that case but again, that’s a joke when compared to the kill rate of chemo and radiation. Am I also to extrapolate then that chelation for lead poisoning ought to be avoided as well since one kid died a few years ago so it is too risky to treat and reverse damage from lead and other toxic metals?

    Secondly, families don’t have time for the pharmaceuticals to decide to fund some fancy double blind research studies on cures that will never be in their interest to validate. Yes research is validating, but when some interventions appear to be working for many families with autistic children, the word spreads and families investigate what might be suitable for them. It’s far from ideal, but it’s better than what pediatricians and the medical industry is offering. Come to think of it, I don’t believe that any double blind research validated the effectiveness of administering citrus fruits and vitamin C to scurvy sailors in bygone centuries, yet no one disputes the wisdom of those who tried that radical intervention. The idea that we should just accept the incurable fate of autism and stop our pesky and hair-brained schemes at curing our kids until some reputable and refined institutions tell us what works and what we are allowed to pursue is misguided and dangerous. In autism, it is parents and families of autistic people who are blazing through to answers and effective treatments-double blind research and peer reviewed journals be damned –that is a whole racket best left to itself.

    Success stories among autism families abound with various interventions. Since autism is not caused by any one factor, neither can it be resolved in all cases by the same treatment. Hence some patients are helped by secretin, others by chelation, diet, ortho-molecular medicine, behavior therapy, etc. Some don’t hit on the right thing or combination of things to address their conditions. Others may not persevere in their intervention as some methods require great tenacity to succeed. Thank goodness families can research, communicate, and find each other online to share information so that they needn’t rely on the medical industry for answers.
    The article was one sided and biased. The reporter only sought out parents who were unsatisfied or unsuccessful in their treatment attempts. What about balancing the story with any number of the success stories that abound. The aims of the story are suspect especially after the MMR scare in the public’s eye must be dealt with and diminished. The smear campaign is now rolling out on those who dare to believe in recovery and treat themselves.

    Though I haven’t yet sought guidance from an alternative practitioner, I have implemented my own interventions for my kids and they are working. Recovery is almost realized and I don’t need no stinkin’ double blind placebo validation to tell me the radical difference I am witnessing in my kids is genuine! I am certain I would be in a very bad place right now if it weren’t for my belief in and dedication to recovering my kids from autism. It has been exceedingly difficult but the alternative (…to the alternative) is unthinkable. So parents of autistic children, please read as much as you can , talk to other families of autism, and keep trying things – recovery is possible but often it requires leaving no stone unturned.

  16. Kev June 7, 2008 at 09:07 #

    So one of your children is no longer autistic? And the other one is nearly not autistic?

    And you’ve only done biomedical inteventions?

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