Predators, Jackals, and Rackets in the Autism Industry

A report released yesterday found that Andrew Wakefield who linked autism to immunization shots was not only incorrect, but he purposely altered the findings in his study. The man is a huge fraud.

Many have long been skeptical about the connection between autism and childhood vaccinations, but to learn that a researcher had consciously altered facts in his report is horrific. It makes this blogger want to spew flames of hate in his general direction.

How many families held back from immunizing their children out of fear? How many medieval diseases were spread? Deaths certainly resulted from these lies. This fraudulent research may have also distracted parents from providing their children with useful therapy and gave them a false cause for their children's condition.

These researchers are just a few of the jackals that thrive in the world of autism. There are countless therapies and services for autistic children, which are not only useless. They are also expensive and time-consuming.

Yesterday, I took Ian to a special swim class at the local YMCA. I ran into another parent from my town who has a son with severe autism. She told me about all the therapies that her son had endured — everything from B12 shots to audio-integration therapy. None of these measures had helped him, but they had cost the family thousands of dollars. She had spent the past decade dragging him to various professionals who claimed miracle cures.

On Monday, I spent the entire day researching a testing program run by a highly respected university. Someone had mentioned the program to me and, like any concerned parent, I don't want to leave any stone unturned. The university told me that they had an eleven hour program that would evaluate my son in a variety of ways, including his educational level, his IQ, language skills and so on. They said the test would cost $5,500 and they wouldn't take any insurance. After several phone calls with my insurance company, I found they would cover half the costs. So, I called the highly respected university to ask more questions.

Eventually, I spoke with a doctor who instead of telling me more about these expensive tests, asked me a lot of questions about why I wanted these tests. An hour into the conversation, I eventually figured out that these tests wouldn't help Ian at all. They were intended for political purposes. Parents, who were unhappy with their school district, paid for these tests, because they wanted to sue their school district. The university would paint a dire picture of the child and recommend that the child attend a private program. They would even recommend a particular private school that the parent chose. Parents would use these documents in a legal battle.

Since we're happy with Ian's placement, we didn't need these tests. It took me an entire day to figure out what was going on.

It would be easy to say that all therapies and services were shams and heists and walk away from it all. The problem is that good teachers really do make a difference. I've seen incredible before-and-after results when smart, sensitive, dedicated teachers and therapists work with an autistic child. Nobody is cured of autism; it's a life-long condition, despite what Jenny McCarthy says. (McCarthy is a whole different kind of fraud.) But smart interventions do improve functionality.

So, parents of an autistic child are in the unfortunate position of having to become instant experts on a neurological condition and to find some way of sorting through good and bad therapies.

There are so many charlatans promising fast and cures to autism, because they are able to prey on the grief and desperation of parents. Some parents really believe that someday a drug will be made that will transform their low-functioning child into the child that they were meant to be. Also, autism research is still in its infancy. There isn't a strong understanding of the causes of the autism. There is still much debate about even the description of the condition. Quacks take advantage of desperation and scientific uncertainty.

Wakefield is just one of the many jackal that are preying on a vulnerable audience. We need greater regulation and oversight over the autism industry.

 

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26 thoughts on “Predators, Jackals, and Rackets in the Autism Industry

  1. Thanks, Laura.
    I first entered this debate because I was vaccinating my children just around the time when Wakefield’s fraud was penetrating the popular consciousness and everyone was being very careful about talking about it. I started trying to learn how to talk to non-scientists about the subject, and one of the first things I realized is that trust in the person giving the advice was paramount. The literature on communication said that people needed to hear this information not from CDC communications or NIH briefs, not statistics on measles deaths and disabilities, but from someone they believed in, who understood their position, and told them what they thought.
    This idea was contrary to the way I evaluate evidence, but I believe you have to talk to people in the way they need (not in the way I need).
    You’re doing that now, and that’s what we need, in order to undo the evil (yes, evil) that Wakefield has done.

  2. Oh, and Laura — is there a reason why you’re not identifying the $5500 program? I’m not asking you to, just wondering what the decision making is on referring to “prestigious universities” instead of the specific program being offered.
    I have a personal issue with university research centers using parental need as a profit making center, that stems from a dyslexia intervention program I was once peripherally involved with. The program grew out of a basic research program, and was developed (it was software based) during the dot.com boom, and ended up making a few people quite rich. It wasn’t a Wakefield style evil, because it didn’t actually result in anyone dying and because there was no fraud in the science (it was and is legitimate science).
    But the commercial program has turned into expensive snake oil. In the beginning there was hope that it was more and there’s still room for hope, but the sales and hype began far before it was reasonable to promise so much. (The program is FastForward, btw)

  3. We’d just gotten our 2-month-old vaccinated yesterday morning, so I used the occasion to lambaste Wakefield on twitter and facebook while ruminating on the many little graves from an 1882 diphtheria epidemic in old family cemeteries. I’m hoping that the personal connection, the family connection, the old stories, and the headline-grabbing fraud story makes a bit of an impression. To my delight, an old high-school friend with an autistic son commented and reaffirmed the point.
    I don’t know, but maybe that’s the kind of outreach that will make an impression. Pity it’s so small-scale.

  4. “We need greater regulation and oversight over the autism industry.”
    The problem is that such regulation and oversight is normally subject to regulatory capture: people who spend their lives doing something and earn their living from it are always better organized and better able to manipulate the regulatory process than desperate, uninformed parents.
    Here’s another project, after the annotated and documented “don’t go to grad school” piece is finished: when are bureaucracies not subject to regulatory capture? Jonathan Chait (I think) wrote something kind of stupid on this a short while ago, but it’s actually an interesting and difficult question.
    (P.S. Chait’s piece was dumb because he mentioned the Social Security Administration as a bureaucracy that had not experienced regulatory capture, which is stupid because it isn’t a regulatory agency, it’s an operating agency.)

  5. Completely agree on Wakefield, but there are two larger problems here.
    The first is that Wakefield couldn’t have victimized anyone who wasn’t already inclined to look for simple monocausal explanations for complex conditions, who wasn’t already overly credulous about weakly sourced press reports about weakly constructed scientific and medical research, and who wasn’t already inclined towards a selfish view of public goods and shared responsibilities. Anybody who decided to forgo vaccination for their children based on a fear of autism was ultimately relying on the willingness of the rest of us to accept the extremely minimal risk involved in order to ensure that our communities as a whole were healthier.
    On the other side of things, however, the problems you describe with the economics of expertise and research aren’t limited to charlatans preying on the parents of autism-spectrum children. One of the fundamental challenges of 21st Century life is going to involve the deep reform of expert authority, scientific and medical research, etc.: if we can’t find a way to put some kind of disinterestedness back into the numerous social and political processes that rely on expert opinion, then the rot that’s setting in throughout those processes is eventually going to overwhelm some of the basic core of contemporary American (indeed, global) life.
    Consumers of expertise need to clean up their act. But so do experts themselves.

  6. That’s kind of harsh.
    “…who wasn’t already inclined towards a selfish view of public goods and shared responsibilities.”
    Isn’t it more the case that many parents just aren’t terrified by infectious childhood illnesses any more and so they don’t value the vaccines as much because they don’t know anybody whose baby has died of diptheria?
    While we’re blaming people, can we also blame all the media people who booked photogenic Jenny McCarthy, and all the celebrities and big companies who pour money into dubious organizations because it sounds like a good cause? Wikipedia (I know, I know) lists all sorts of mainstream people as donors to Thoughtful House:
    “Thoughtful House received $2.4 million in donations in 2007 and had assets in excess of $4.5 million.[20] TD Ameritrade, Microsoft, Anheuser Busch, and Chicago Title Insurance Company all donated to THCC in 2007.[21] In 2008 the center received $2.7 million in donations despite holding no fundraising activities.[22]
    Among the centers celebrity supporters include country music group The Dixie Chicks, baseball player Curt Schilling, model Jenny McCarthy, pitcher Huston Street, actor Pell James, actress Lori Loughlin, and Kelly Preston.[23][24]”

  7. bj, didn’t mention the name of the big named university, because they weren’t exactly frauds. They were providing a political service, which is necessary in many cases. However, they didn’t advertise that this was the service that they were providing. It took lots of questions to figure it out.
    Tim — Who believed the Wakefield study? Well, in some ways, it was the skeptics of authority that believed them. They believe in a grand conspiracy between gov’t and pharma companies. Wakefield is the expert that exposes the experts who put money ahead of the health of children. I was just reading a comment on another blog that said that Wakefield was martyred by a gov’t-pharm conspiracy. Despite all this evidence, she still believed that Wakefield was correct.
    I don’t know if we need a governmental agency to regulate this industry. Maybe something like Angie’s list, where people plug in reviews to various programs and therapies. (This is a dot.com opportunity! Venture capitals, give me a call.)

  8. “Consumers of expertise need to clean up their act. But so do experts themselves. ”
    I’m not sure what this means. How do the experts clean up their acts? How do consumers? If it’s an exhortation for all of us to just be more moral, smarter, and wiser. Well, we could have said that at any time, in any century.
    What I see (this is true about autism and developmental and learning disabilities, but also about cancer and global warming and school effectiveness research and even financial systems) is that we are all faced with making decisions using very complicated analysis of very complicated information. We are all not going to become experts on every topic.
    So, when we say we need “disinterestedness” how, exactly, are we going to create that with flawed humans?
    Chris Mooney has a piece in the Wash Post, titled “If scientists want to educate the public, they should start by listening” in which he points out one problem: the conflation of scientific evidence with other decision making. That’s one piece of practical information.

  9. If it’s an exhortation for all of us to just be more moral, smarter, and wiser.
    Like church, but more likely to involve math.

  10. I completely agree with Laura here and feel fortunate that this is not an issue I have to deal with.
    But I live in Los Angeles and there is a certain kind of semi-rich mother who is over the edge here. Some of them actually go to Jenny McCartney’s doctor (who I wouldn’t touch with a 10 foot pole). And there are increasing questions about Pertussis, the vaccine, and why it doesn’t seem to work (why kids who have been vaccinated are getting it). I have also seen pretty educated people (non-rich, just academic types) turn into total nuts when it comes to their health and their kids health. Honestly, I think doctors need to be less defensive and answer parents’ questions. I personally vaccinate my kids according to the schedule and trust my doctors. But I have also had them brush off my concerns and I wasn’t aggressive enough. Now I don’t take it personally but many people do.
    So what I am saying is maybe we need some more humanity in medicine and a bit more explanation. And if people don’t know the answer to say “I don’t know”. There are a lot of people who don’t trust doctors or the government (who are on the liberal end of the scale, politically) and regulation isn’t going to help here!
    And honestly, for people to learn how to debate and use facts in “argument” at school. And not be personally insulting to people.

  11. “Honestly, I think doctors need to be less defensive and answer parents’ questions. ”
    I think doctors are learning this — not just about parents, but also about “google-med” patients. It irritates doctors like crazy that people come in with half-crazed ideas based on internet research. But, they’ve come to recognize that they’re not going to be able to solve that by preventing people from googling. So then, you have to have answers to the questions people get from doing a search for “lice treatment” or “autism and vaccines” on Google. You can’t just pat people on the head and say don’t worry your pretty little head about what you read.
    I’ll note that my doctors were very very gentle in approaching the subject of vaccines. So gentle that I had to cut her off, and say that they’re one of the two miracles of modern medicine.
    And though we liberals like to harp on the conservative attack on science (which I do believe to be real), I don’t think we can blame the vaccine frenzy on the rightist-end of the spectrum. There’s definitely a lot of resistance to vaccines from the liberal end, as well.

  12. “I think doctors are learning this — not just about parents, but also about “google-med” patients. It irritates doctors like crazy that people come in with half-crazed ideas based on internet research.”
    The whole autism field is pretty new. It is entirely possible for a parent to know a lot more about autism than their doctor does, or it least that was the case until very recently.

  13. But, they’ve come to recognize that they’re not going to be able to solve that by preventing people from googling.
    About five months before our elder daughter was born, the ultrasound tech spotted a huge abnormality. After explaining the abnormality, the maternal-fetal-specialist we were referred to told us to be careful not to Google “kidney cyst” or “renal cyst” — that that was an altogether different (and much scarier) thing. But if we searched for “adrenal cyst” we’d probably be reading the same stuff she would be.
    I was amazed–and impressed–by this approach. (And our daughter turned out just fine, FWIW)

  14. “But if we searched for “adrenal cyst” we’d probably be reading the same stuff she would be.”
    Yup, this is precisely what they need to be doing, no? to guide you in finding the information you need, not just telling you to trust them. My doctor used to vastly over-estimate my medical knowledge, and hand me raw reports, sometimes, and my attempts to understand them proved to me that doctors really do learn something in medical school (and subsequent training).
    Sometimes you will know more than your doctor on a subject, and they have to learn to recognize that, too.

  15. The double blind research on vaccinations still has not been done. Doctors do not provide the information for informed consent and ask about risk factors for vaccine reactions. I was on my third kid when I mentioned, yet again, some family medical history and she responded “Oh, maybe you’re one of the ones who shouldn’t vaccinate.” It’s a good thing I wasn’t counting on her to make the correct decisions for my family.

  16. Alison — what question or hypothesis do you want to address with “double-blind” studies of vaccines?
    Double blind studies in medicine are usually done to test the efficacy of an intervention (and to measure side-effects at the same time). Some interventions can’t be done double-blind (for example, ABA therapy, since the person doing the therapy would know hey were receiving it, though perhaps one could blind the parents, if not the child). Vaccine studies could be done double-blind (neither the recipient nor the medical personnel know who has received the vaccine and who hasn’t). These studies have certainly been done with vaccines in the past, to look for efficacy of the vaccination & side effects.
    Do you mean a double-blind study to look at links between autism & vaccines? One wouldn’t usually think this necessary, since the period of vaccination is so distant enough from the time of autism diagnosis that the there is effective blinding.
    You might mean an randomized control trial (RCT), which would involve randomly assigning infants to either receive or not receive a vaccine. And, notably, this kind of study will never be done, because it would be considered unethical to withhold vaccination for that large a group of infants, without the consent of their parents (because the randomization would mean that a parent didn’t know whether their child received a vaccine or not). That’s the kind of study that gets stopped mid-trial when it’s determined that it’s unethical to continue the trial.

  17. To follow on to BJ’s point, austism is, at the high end of estimates I saw in a quick google, found in 1 out of 100 babies. You’d need over 5,000 babies to have a sufficiently powered study (power = .8) to detect an effect if a vaccine doubled the risk of autism.
    Identification is possible in those under 3, but I gather you have to wait until five or older before you get a good chance of catching most of the cases. Even with optimistic assumptions about retention, you’d need over 7,000 babies to account for the loss of participants in the long follow-up period. Optimistic assumptions about retention are probably very much not warranted in this type of study.
    Realistically, I’d guess that .8 power won’t be enough to convince anybody that wasn’t convinced by the many naturalistic studies done to date. And that they may want it powered to detect less than a 100% increase in incidence. Plus, you’ve got a whole bunch of vaccines and the number needed to assess each one would be impossible to achieve. And that, as BJ notes, ethical concerns would stop such a study if it ever got going. (“Dear IRB: We’d like to stick needles in babies and we promise we aren’t enjoying it….”)
    Relatively rare, long-term outcomes are not a good use of resources outside of situations where other studies show some reason for doubt.

  18. The big autism organizations are just as much to blame for the burgeoning autism quackery industry as the “true believer” parents and the quacks themselves.
    I call on Autism Speaks, NAA, USAAA, and all the rest to stop using fear and pity to fundraise and increase autism “awareness”. (The precise formula is Fear, Uncertainty, Doubt, and Dread — the acronym for which is FUDD, as in Elmer: “Be vewy vewy quiet… we’re hunting *tweatments*!”)
    And I call on the Autism Society of America, of which I am a member, never again to engage in such tactics (having at least retired their “shock and awe” publicity campaign of a few years ago).
    Autism does not *have* to be an unmitigable tragedy. The right interventions, mitigation of sensory distress, provision of AAC (alternative/augmentative communication) devices when expressive speech is not developing or has not developed in a timely manner, go a long way to prevent the sort of horror-story that strikes fear into the hearts of parents and sends them running to the quacks.

  19. I have a sincere question. What regulation and oversight do you think would prevent this? Wakefield is in Britain. He published in a respected journal. After his work, vaccinations were still required for school attendance. The AMA, CDC etc did not change their vaccination recommendations. In addition, there is a strong push for insurance companies to cover autism treatments- such as behavioral therapies. What evidence should be required for insurance payments in order to prevent parents being taken for a ride, or children being subjected to potentially harmful therapies? We need to do this without preventing access to things that might work.

  20. Petal’s question is serious and I hope somebody answers it seriously. Here’s a non-serious suggestion: putting a warning label on Oprah’s show (maybe a black and white band at the bottom of the screen). “The surgeon general has found that listening to Oprah and taking her guests’ advice seriously may be dangerous to your and your children’s health.”

  21. There is a national standards project on autism: http://www.nationalautismcenter.org/about/national.php
    I believe it is reasonable to use information from such projects to make recommendations, determine access to government funding and insurance coverage. I know there are people who will disagree, but I see no other alternative.
    We can’t prevent people from chasing after their own curs with their own money. Unfortunately, that can limit access to good treatments to the relatively affluent before they become part of the good standards. I think intensive ABA-style therapy, with its expense is going to be part of the national standard, for example, but it wouldn’t have been right away. And that’s presuming that there will be coverage for treatments deemed to be effective. On the flip side, private pay treatments do sometimes seem to encourage the expense/marketing of non-dangerous, but useless treatments (high dose water-soluble vitamins, for example.)
    I also think its important for parents who have tried “cures” to talk about their journey. Squid, at http://www.squidalicious.com/, has an informative story that can be read y hearing her thoughts at the time. If that helps someone who is at the start of their journey skip or speed through some detours, that’s great. Information like that helps, too, because people often need to come to their own acceptance of their decision. Guiding, rather than railroading seems to be a useful strategy.
    Regarding Wakefield, specifically, I regard the publication of that research, based on a tiny n, with huge claims, to have been problematic from the beginning. Such research usually dies a quiet death, but more rigorous review of the work, less acceptance of a dramatic theory with poor evidence that was notable even in the original paper, those things might have saved some lives and mistaken paths.

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