The Great Autism Rip-off?
The great autism rip-off is a story in the May 31st Daily Mail about the numerous alternative medicine/biomedical treatments that parents of autistic children turn to—-and how this has become a “huge industry” that “feeds on parents desperate to cure their children.” The Daily Mail cites an article in the Journal Of Developmental And Behavioural Paediatrics that notes that a third of parents of autistic children have tried such unproven treatments, and that 1 in 10 has used what is, according to experts, “‘a potentially harmful approach’.”
I’ve related our experience trying some biomedical treatments in an earlier post. We thought we saw effects of an often immediate type but none were lasting and it was truly education that has made the difference for Charlie.
When it comes to parents trying to help their children, sometimes the feelings of the heart can influence the decisions of the head more than a lot. Caveat emptor, caveat.
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POSTED IN: Junk Science, Money, Parenting, Treatment
43 opinions for The Great Autism Rip-off?
Emily
May 31, 2008 at 11:05 pm
As I’ve observed before, there’s a clear reason that Thoughtful House is sited where it is. I don’t think it’s coincidence that it’s in one of the area’s wealthiest ZIP codes in a school district known for its services to special needs children.
Kristina Chew, PhD
May 31, 2008 at 11:19 pm
Hmmmm………not just a coincidence…..
Bonnie Sayers
May 31, 2008 at 11:43 pm
Someone posted in a group I am in just today saying she has spent 1/4 million on her sons therapies and treatments. He is six and the stuff they have done and she listed and then said he still had gut issues. If I was poked and had to go through all that I would have issues too. I would not be able to handle a colonoscopy, how do kids deal with pill cams?
Did you hear that Jenny Mc Carthy’s kid was in some induced coma for a few days after having a seizure?
Bonnie Sayers
May 31, 2008 at 11:44 pm
The way I read the email in this yahoo group made it seem like this seizure just happened, but maybe she heard wrong at the recent conference? I would think there would be a story out there on this if it is recent?
I see the advertisement to the right on this page is for a way to cure ADHD/ADD naturally. Wonder who is sponsoring that, I did not click it on.
Thomas
May 31, 2008 at 11:50 pm
We tried the biomed thing too, with similar results. Kristina, I had e-mailed you about a program called Brain Balance, which is looking to charge someone $13,000 for two six-week sessions. Have you heard anyting about this progam? It seems to fall in line with what the Daily Mail article is talking about.
Emily
Jun 1, 2008 at 12:08 am
The article, by the way, is excellent. Nice investigative journalism, good experts, clearly laid out, lacking in hyperbole.
Bonnie Sayers
Jun 1, 2008 at 12:11 am
I like how the author organized the Drs at the end and compared their prices, etc. Now if only I knew what those were in US $.
The article is on Digg. So please digg it, if you care to:
http://digg.com/health/The_great_autism_rip_off
Bonnie Sayers
Jun 1, 2008 at 12:12 am
FYI - I just posted the link to the article on Digg, so it must be in moderation waiting to be posted.
Kristina Chew, PhD
Jun 1, 2008 at 12:21 am
@Bonnie, I’ll have to see what is going on with that ad. They can’t spell it seems — “hamful” and dangeroulsy”…..
@Thomas, thanks for the email—is it this program? I haven’t heard of it—-if it’s $13,000, that would be $7500 per session….
Bonnie Sayers
Jun 1, 2008 at 12:37 am
The site with the article takes comments, but they are moderated so not sure when they will show up since it shows none still. I left one and wonder if I will get hate mail in the days to come.
Bonnie Sayers
Jun 1, 2008 at 12:46 am
I checked out that link to Brain Balance. They are located in Los Angeles. Maybe I should look into it for an article - an undercover one of sorts!
probiotics
Jun 1, 2008 at 1:08 am
All illness is a financial windfall for the drug companies, scam artists, and alt health industry. I’ve been in the alt health industry for 8 years now and I’ve counseled people from day 1 not to spend too much money on any cure for any illness otherwise 99 out of 100 times they’re going to get scammed. My advise has always been to seek natural ways to boost the immune system and aid the digestive and elimination organs. Simple things like flax hulls, probiotics, flooding the body with oxygen, and eating a health diet while avoiding things like fluoride is all it takes to promote good health and healing when healing is “in the cards”. When healing isn’t in the cards, then education, spirituality, and the having a firm understanding of the “big picture” is what it takes to press forward.
While it should outrage us all that scam artists are allowed to prosper from illness it should also outrage us that effective cures for illness (the ones that can’t be patented by the drug companies) are often kept from the public. For those who don’t believe this happens I created a page on hidden cancer cures: http://www.liquidzeoliteplus.com/natural_cancer_cures_FDA_stops_fights_procecutes_ends.html
In other words, bag guys come in all shapes and sizes.
HCN
Jun 1, 2008 at 1:40 am
Kristina, please remove the previous posting from Mike the Zeolite saleman. It is a sales pitch from a clueless scam artist. He has not read your blog entry and trying to cash in on parents’ desperation.
Thank you.
Kristina Chew, PhD
Jun 1, 2008 at 1:54 am
Thanks, HCN.
I’ll say the same as I did last time he left a sales pitch: This is a site for serious and thoughtful discussion about autism and not a venue for commerce. So, “probiotic”: Please do not leave sales pitches in the comments; future comments of a similar nature are not allowed. Thank you.
laurentius-rex
Jun 1, 2008 at 5:14 am
Just what the Doctor ordered, about time that Richard Mills and his team went pro active in countering the publicity machine of the Charlatans.
Some of us have been urging that for a long time.
Good timing too with Kirby’s recent appearance over here to bolster the fraudsters ego’s
note - (should that be an apostrophe there, I dunno, ain’t no panda)
David N. Andrews M. Ed. (Distinction)
Jun 1, 2008 at 5:55 am
“Good timing too with Kirby’s recent appearance over here to bolster the fraudsters ego’s
note - (should that be an apostrophe there, I dunno, ain’t no panda)”
No, Larry… but don’t worry… most people get that one wrong. I think it’s because there’s no ‘e’ after the ‘o’.
waterlotus
Jun 1, 2008 at 9:32 am
Yes, scammers abound in all areas of life.
However, I think that “natural” ameliorative attempts draw unwarranted criticism just because they are not in the mainstream and backed directly or indirectly by big pharma whose greed and lack of ethics have caused immense suffering, death and damage.
Natural approaches to autism, for example, are often maligned and ridiculed as unproven, However, I am aware of many cases where mainstream doctors are, willy-nilly, prescribing many unproven drugs to change mood and behavior. I see this often in a Hippo Therapy program where I work… kids coming in with dizziness, weakness, irritability, drowsiness from prescribed “orthodox” drugs which have no proven record of cure or help with spectrum disorders.
As parents and care givers we must be cautious about any treatment offered our children. Skepticism is a virtue in this area but cynicism, especially about natural therapies can obscure many fruitful paths of investigation.
mike stanton
Jun 1, 2008 at 9:52 am
Yes, it is good to see some proper reporting about autism for a change, especially in the Mail.
Kristina Chew, PhD
Jun 1, 2008 at 10:10 am
Learning about autism treatments can lead one to self-administer healthy doses of skepticism…..
larry, about that apostrophe or not for “ego’s”—-guess (grammatically, Latin-ly) the “correct” plural form would be nos.
Joseph
Jun 1, 2008 at 11:57 am
I also find Mike’ (Liquid Zeolite’s) spam comment here completely ironic and completely inappropriate.
Storkdok
Jun 1, 2008 at 12:15 pm
Kristina, I made a comment that I suspect is in moderation because of a link to the NY Times. Would it be possible to okay it? It is about a book. I would greatly appreciate it!
liquid zeolite
Jun 1, 2008 at 1:07 pm
I’m not pitching anything, except maybe the truth which is a pill big pharma doesn’t like to hear. Again, my point is that big pharma is the #1 scam artist and profiteer from autism with unproven drugs that cause more harm than good. At least the natural supplements are effective, something that autism drugs can’t claim. As proof I offer this study based on the replies of over 26,000 parents of autistic children. http://www.autism.com/treatable/form34qr.htm
I’ve posted this link in the past and some here have suggested that this study is worthless because it’s nothing more than a parents “opinion” on whether or not a drug or supplement has a positive, negative, or no effect on their child. I suggest that a parent is more than qualified to render such a verdict. I suggest that the drug companies are the ones making out like bandits from treating disease rather than finding the causes or cures. I suggest that the drug companies are in the business of making a profit and thus, it would be counterproductive to find a cure and productive if we remained sick all our lives. (think side effects).
Sorry if you thought my last post was trying to pitch something, it wasn’t. It was simply pointing out that the best way to deal with any medical condition is to use natural substances to boost the immune system and to avoid harmful substances and practices. That’s my opinion, sorry if it bothers you.
Bonnie Sayers
Jun 1, 2008 at 1:22 pm
My comment from last nite with the Digg link is not posted, but the spam link got posted?
Emily
Jun 1, 2008 at 10:25 pm
What kills me is that people who are stridently anti-vaccine will accept multiple injections of secretin (wonder what the vehicle for that is? Or how it’s derived? Or mass produced?) or “treatments” that have no known efficacy and in many cases are invasive and harmful. What a disconnect. I think there’s this hope that they’ve stumbled across The Secret Cure that no one else knows about or that everyone else is too stupid to understand, and it’s also useful that the peddlers of such Secret Cures set themselves up as a sort of medical counterculture fighting the establishment conspirators. Makes a parent feel like a really smart, combative, wily David against the establishment Goliath–but the truth is, they’re just suckers.
Mike
Jun 2, 2008 at 12:00 pm
Emily,
Anyone who uses anything that does not work or worse yet causes harm is being suckered. I wouldn’t go as far as call them a sucker, that’s kinda mean. Some people are just more trusting than others. I suggest the drug companies sucker more people than the peddlers of alt health supplements.
Look at the link above from the 26,000 parents of autistic children. I’m 100% sure those are accurate numbers. Why? Common sense. I suspect some of the “positive” results for pharma drugs were submitted by drug company lackey’s, shareholders, or workers as the risk of monetary loss is enough to encourage some to try and cast a vote in this showdown. Since the supplement section doesn’t list any product names, I suspect that’s not such a problem with the fans of supplements unless some FAN doctors just fill out a “positive” for all products. However, that would defeat the purpose of this study and I can’t imagine many if anyone wasting the time to do that. (and getting call-backs all the time as you have to give your phone number and get follow-up questions, yuck!) So I suspect this is a pretty accurate study. Given that fact, how do you explain the fact that pharma drugs on average (all of them as a whole) do more harm than good and all of the supplements do more good than harm? 26,000 people, that’s not a small study.
One more question. How many doctors do you think actually warn parents of the risks involved with vaccines before they administer them? (required by law but rarely done). To be fair, shouldn’t vaccines come with a cigarette carton type of warning for parents? At least drugs come with a warning label (need magnifying glass to read however). Just wondering how your mind works.
Emily
Jun 2, 2008 at 12:37 pm
My mind works fine, thanks for your concern.
laurentius-rex
Jun 2, 2008 at 1:48 pm
And how many insane anti vax flat earthers warn about the consequences not only to there own children but other as well when not vaccinating.
You are playing russian roulette.
Joseph
Jun 2, 2008 at 1:54 pm
At least the natural supplements are effective, something that autism drugs can’t claim. As proof I offer this study based on the replies of over 26,000 parents of autistic children.
That’s not proof. Parents who would answer surveys of the Autism Research Institute already have a particular kind of mindset. The responses there are predictable. Such surveys are not in any way reliable means to determine treatment effectiveness.
And Mike, your comments are spam simply because they peddle alt-med treatments while advertising your name as “liquid zeolite” or “probiotics” and such, with a link to your website.
Frankly, I can’t even be sure that you actually believe the things you say.
Regan
Jun 2, 2008 at 2:29 pm
Why might we possibly believe things work that don’t and see patterns that aren’t there?
Cognitive biases (about 200 described)
Omission bias (remembering what you want)
Gamber’s fallacy (The other 20 times didn’t work, so we’re due a success)
Rosenthal expectancy effect (why we use double-blinded experiments, or other to control for introduction of unattributed variables.)
Illusion of control
Herd instinct
Choice supportive bias,
False memory,
Etc.
Things that as humans we are susceptible to
Seeing random events as non-random,
Under or over estimation
Associative processes
Illusion of causality to correlational events.
—————
Why people promote that which may not have an effect?
Because of the above but also to
Feel important
Feel in control
Want to fit in
Verbal seduction due to groupthink or propaganda (”that which ought to be known”).
And in some cases, $$.
It doesn’t necessarily make us evil, but because of our susceptibility to bias and need to believe, it should make us careful. To be honest I am cautious of blanket application of anything to all children with autism, simply because they are children with autism, whether manufactured or “natural” (and there have been some natural supplements that have also been pulled from shelves for adverse effects to the public).
Everything but the kitchen sink is currently thrown at autism because the etiology is relatively unknown and a “cure” evasive. Not everything represented by advocates of treatments is as represented. The press has been somewhat credulous to date–so this story is useful. If someone is of a skeptical turn, it might make him or her think about it. If someone is not, it probably won’t make much difference, but I don’t think people should have a panic at a story that doesn’t align with a personal theory or belief. A strong need to have a party line toed is probably something that needs to be examined on its own.
Kristina Chew, PhD
Jun 2, 2008 at 3:31 pm
Autism News Beat posts about the article as “the greatest story never told.”
farmwifetwo
Jun 3, 2008 at 7:39 am
I’m one of the few that diet change did help and dramatically. The fall-out 7 days later from a tiny bit of butter was UNBELIEVABLE. 5yrs later we are still dairy-less in this house. Did NADA for the severe non-verbal one.. so no, doesn’t help everyone.
Saying that, he had cronic diahhrea since birth, nightmares/terrors since 18mths….
Did removing dairy cure him… NO!!! But it removed the “stoned”, the clutzies, the “disconnected from the world” etc. Lots and Lots of speech therapy, nagging for a proper education and Mom “cured” him. Now, if only social and behavioural gains were that simple. But I guess that’s why they call it NVLD.
S.
Marla
Jun 3, 2008 at 4:49 pm
We tried many “therapies” as well and I agree with K that education makes a huge difference. Also, letting our daughter relax and develop at her own pace has made a huge difference. There are many therapies pushing the fear that everything needs to be done as early as possible of your child will be ruined. I bought into that at first. It almost ruined us.
Ed
Aug 13, 2008 at 10:11 pm
Kanner described autism in the 50s. Bettleheim came along and blamed refrigerator moms for autism. How many years did it take before he was denounced? February, 2007 and the CDC finally acceded that there really is an autism epidemic after a decade denying it. For all the time and all the pressure of 1/160 children with autism, the medical community has no medical treatment for autism beyond the same drugs used for mental diseases.
Given what the medical community had to offer, I too sought help elsewhere. A good part of it was a waste of money, and some of it changed him in ways that were both positive and profound.
BTW, the statistical test to determine if vaccines and autism are related is to take a large sample of vaccinated children and compare it for autism rates against a large sample of unvaccinated children. To date, this has not been done. I do not understand how the medical community can claim no relationship when this has not been done.
laurentius-rex
Aug 14, 2008 at 6:11 am
Come of it ed, there is a statistical correlation between incidence of autism and the growth of television, what does that prove?
You need a mechanism not a correlation, all correlation does is suggest that there may be a connection, but not the direction nor even if there is not a third extraneous factor that affects both variables, as in the case of television, or mobile phones.
What is more all the CDC knows is incidence, nobody knows the prevalence of Autism any more than the prevalence of people with one leg longer than the other, which for all we know could be caused by ELF radiation from Electricity Pylons.
Kristina Chew, PhD
Aug 14, 2008 at 8:37 am
And there have been studies looking at the medical records of hundreds of thousands of children who did or did not receive vaccines (the MMR, in the studies below):
–scientists from Helsinki University (in Finland) examined the records of 2 million children; found not evidence that MMR causes autism
–Boston University School of Medicine researchers examined the medical records of more than 3 million children; they found an increase in the rate of autism, but this increase was not associated with the children getting the MMR
Ed
Aug 14, 2008 at 8:53 pm
There has never been a test of vaccinated vs unvaccinated. Yes, of MRM vs no MRM, but not vaccinated vs unvaccinated.
Ed
Aug 14, 2008 at 8:55 pm
As to my first point, the reason people seek other alternatives is because the medical community has so little to offer.
Ed
Aug 14, 2008 at 8:57 pm
LR,
Statistics are often used to determine how diseases propagate through society, but seldom as poorly as for autism.
Kristina Chew, PhD
Aug 14, 2008 at 9:51 pm
Yes, but there have been studies about rates of autism in children who received (certain) vaccines as noted above, among others.
laurentius-rex
Aug 15, 2008 at 4:51 am
People are wired to see connections, often where there are none, the doctrine of signatures in homeopathy originates that way so does the worship of sacred springs and the reading of portents in the skies.
If you want to argue anything, argue that Autism is a 20th century invention, it correlates with just about everything that has increased in the last half century including in recent times the growth in the internet and in media interest, those latter two not being idle speculations at all, at least not compared to those who see recent increases in diagnoses as due to phone masts and electricity pylons (yes some people really do think that)
The reason why there is a correlation between the media and internet and autism ought to be the most obviuos, it has spread the knowlege of what nowadays constitutes autism and increased the demand for diagnosis, the rest is a political, economic and sociological effect that has it’s parrallels elsewhere. You can’t study the epidemiology of Autism without regard to medical sociology, and I am sure the best and most experienced epidemiologists know that, Autism is not something in isolation, one has to look too at peaks and troughs of other conditions before it, ADHD, Dyslexia, COPD, Polio, and nowadays measles, and yes there is a correlation between anti vaccine madness and the increase in the incidence of measles, that is an entirely sociologically induced “plague”
Ed
Aug 15, 2008 at 10:28 pm
My point is that the medical community has spent time and money to statistically prove that there is no connection and never performed this most fundamental test. In the meantime, since Kanner the medical community has developed no clue about how autism happens or what to do about it. Do you wonder why parents look for help elsewhere?
Kristina Chew, PhD
Aug 19, 2008 at 11:11 pm
I’m not surprised that parents look for help elsewhere, but one question is to what end? what kind of help?
Ed
Aug 19, 2008 at 11:45 pm
Many of us have met with success, though not with the medical community. The GFCF diet has helped some. My brother’s son does well with it. My son has done well with other treatments. But that is another lengthy story.
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