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Skeptical Ninjas Undercover: Jamie and Buffy and the Autism Expo

Last weekend was a busy weekend for the Women Thinking Free! While I was here blogging and tweeting my life away (or it seemed like I was, but I still had time to go grocery shopping, get to the gym and make tacos), WTF board member/Skeptical Ninja Jamie Bernstein teamed up with our a member of our sleeper contingent, Buffy Baggot and snuck into the 2nd Annual Autism Seminar in University Park, Il. (And by “snuck in” I mean they bought tickets and walked through the turnstiles like everyone else.)

I wanted to attend this expo for personal and skeptical reasons… but I had a scheduling conflict – Delaney had to get her 6 month shots! And since I’m not one to leave my baby unprotected against pertussis for a minute longer than she has to be, I opted to take her to the doctor over taking her into a building full of unvaccinated people in the middle of a pertussis outbreak.

I was optimistic about this seminar. It was hosted by Family Time Magazine, a free local publication, and it was held at Governors State University. My son’s speech therapist received her masters from GSU, and the last time I picked up Family Time, I got some great tips on dealing with my son’s developmental delays (including the fact that he gets free special ed preschool!) So while I was certain there would be some woo, I was naively hopeful that it would be mostly reasonable and helpful. I was wrong.

Fortunately, I wasn’t there. Fortunately, Jamie and Buffy were. And fortunately, Jamie reported back and wrote this guest post!

Ninjas at the Expo

Jamie Bernstein

When I went to the Autism Seminar, an Autism Expo on the outskirts of Chicago put on by Family Time Magazine. It was merely a reconnaissance mission to take some notes and keep track of which autism organizations in Chicago are targeting parents of autistic children with un-proven or dangerous products and therapies. I knew there would be some, but was not prepared for the sheer magnitude of harmful products and misinformation available at the expo.

Right after walking in the door, fellow skeptical ninja Buffy (Coolest. Name. Ever.) and I were accosted by two lovely old ladies selling a vitamin drink. They informed us that the drink does not cure anything, but that one of them has a husband whose arthritis improved after using the product. A little confused as to what arthritis has to do with autism, I asked them if their product could help a child with autism. They seemed surprised by the question, which is a little odd considering we were at an autism expo, and informed me that good health can help everyone including autistic children.

Moving on, Buffy and I came to a table for the Holistic Health Center, which offers acupuncture, homeopathy, bio vector balance (for allergy elimination), energy healing and auditory integration training (which supposedly helps with learning disabilities and autism.). Most of their services were targeted toward children but the woman manning the booth seemed unable to answer any questions we had.

After getting some coffee, we got out the schedule and scanned it for some talks that seemed interesting. As soon as we saw that one entitled “The Autism Whisperers” was going on at that moment, we rushed over to the theater to catch the last hour.

The talk was given by Robyn Stoetzel and Ashly Ochsner of Maximized Living. They actually do call themselves the Autism Whisperers in all seriousness and have a picture of an adult whispering to a child on some of their materials, which amused me greatly. Although we missed the beginning, we came in just in time to hear an exhausted list of all the things that are giving our children autism. They mentioned vaccines, of course, but made sure to say that “vaccines do not cause autism. They are only one of the things that cause autism” and boy were they right. The rest of the list consisted of: trans fats and fried food, food preservatives, Lunchables, McDonalds’ chicken nuggets, pesticides, high fructose corn syrup (which is tainted with mercury!), gluten, sugar, your neighborhood (they suggested moving), milk (it has the same chemical in it as morphine!), plastics #3, 6 and 6, soy, Tylenol (“Taking a whole bottle of Tylenol kills you so how could taking one help you? It doesn’t”), power lines, tap water, meat from vaccinated animals, paint, bug spray, cleaning products, microwaves, cell phones, laptops, toys, energy efficient light bulbs, and my favorite: airport security (seriously people, airport security is giving your children autism!!). It would be funny if the effects of the misinformation weren’t so harmful.

After telling parents that pretty much every single thing in the world is giving your children autism, they gave some tips on how to avoid these things. It mostly consisted of shopping at Trader Joes and making food at home from natural and organic foods. And, for everything that you can’t avoid, you can just take their children into the Maximized Living Center and Stoetzel and Ochsner will remove the toxins from your child’s body with homeopathy, supplements and chiropractic. Their entire two-hour talk consisted of 1hr 58min of scaremongering and a good 2 min plug at the end on how their services can help save your child from all the scary things in the world. Unfortunately there was apparently no time in those two hours for a question and answer session, though they did have time for a video at the end of physically disabled children overcoming obstacles while inspirational Jesus music played in the background. What any of this had to do with autism is anyone’s guess.

Following the talk, Buffy and I went back to checking out all the booths. There were all sorts of crazy things including a lot of homeopathy, acupuncture, chiropractic (apparently autism is caused by pinched nerves! Someone should have told the autism whisperers about that because it wasn’t on their list), some sort of metal meter that measures your energy levels via a complicated looking computer, special autism therapy involving your child wearing specialized glasses, energy water, fruit snacks made from a magic berry (only $20 a package!), and other rather insane products.

Luckily, things weren’t all bad. There was a couple booths whose lists of services consisted only of things were evidence-based like behavioral therapies. Unfortunately these tables didn’t have the pizzazz seen at the woo tables and they seemed to have less customers. I talked with a woman at one of the booths and asked her how it felt to come to these expos and see so many peddlers of dangerous therapies. She said it was difficult and annoyed and angered her, but the best she could do was offer her services and hope that parents are smart enough to avoid the more harmful services. She was giving a talk at noon, that I wasn’t able to go to, on evidence-based therapies. She said that she felt like she had to in order to try to steer parents toward therapies that will actually help their children.

At some points during the expo, I was having trouble distinguishing evidence-based therapies from the crazy ones. Although most were obvious, some had enough of a kernel of truth to them that it became hard to tell. If I was having trouble distinguishing the genuine from the scams  as someone who has been reading skeptic websites for years, I can’t imagined how parents of autistic children who have no experience in this area must feel.

Although I expected some crazy to have infiltrated the autism expo, I was completely blown away by the sheer magnitude of dangerous services and misinformation being offered. These expos seem to let anyone who can pay receive a booth. This policy allows many harmful products to be sold, but on the other hand, it also creates an opportunity for skeptic organizations to really make a difference. Any well organized skeptic group could easily set up a booth at these expos with consumer protection information on warning signs for scams, and include information on which therapies are evidence-based and what the current scientific information regarding autism is. These expos can provide an easy and practical way for local skeptic groups to participate in community skeptical advocacy. You can be certain that this was the last free-ride expo that the Autism Whisperers and other anti-science organizations in Chicago will have. The Women Thinking Free Foundation will be represented at future expos in Chicago doing our part to promote science and critical thinking in realms where it is needed the most.

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Elyse

Elyse MoFo Anders is the bad ass behind forming the Women Thinking, inc and the superhero who launched the Hug Me! I'm Vaccinated campaign as well as podcaster emeritus, writer, slacktivist extraordinaire, cancer survivor and sometimes runs marathons for charity. You probably think she's awesome so you follow her on twitter.

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11 Comments

  1. “Taking a whole bottle of Tylenol kills you so how could taking one help you?”

    By homeopathic means, of course.

    Oh, and the chemical in morphine would be… morphine! If milk had morphine in it, I can assure you, the dairy counsel wouldn’t have to spend their money on “Got Milk?” ads.

  2. I thought it was pretty cool that at least one of the tables had a science-based talk going. I wonder if we could get in on that as well? I especially like Jamie’s idea and think we should expand on that: Why not have a talk that centers on how to spot scams and bogus information for the average parent. It would have been very useful for a lot of people there.

  3. The rest of the list consisted of:… your neighborhood (they suggested moving)

    LOL! Are you kidding me? That reminds me of the old joke “Your mother and I heard that all car accidents occur within 5 miles of home, so we decided to move.”

  4. Jamie awesomely said:
    “If I was having trouble distinguishing the genuine from the scams as someone who has been reading skeptic websites for years, I can’t imagined how parents of autistic children who have no experience in this area must feel.”

    My wife is in the education field, specifically special education, with an even more narrowed focus in kids with autism. Neurology and psychology of it, behavior programs, PCP, TEACCH and all that. For all her yoga ‘stuff’, she is “not a fan” of Jenny McCarthy and the like (when I told her about the AMC nonsense this weekend, I was delighted with an impressive display of NYC subway cussing).
    What Jamie found is exactly what she finds with the parents of her kids. That many either are in a state of just managing day to day or in a desperate state of finding something that could maybe work for their kids, so they can grow up and get a job and even maybe move out and live on their own.
    That end part is the nature of my wife’s job, a mission she knows as true, as she’s seen it and done it.
    Depending on the parent, the child, and situation, she finds the entire thing in flux, families slide back and forth between the two options. Depending on the day, and whether or not her school administration gets her the support and gives her the okay for programs, she can do all of that. She says that when legal and school systems do everything not to help, no wonder parents resort to magic and wishes.

  5. @DanSRose: Exactly. Many of the non-evidence based therapies had a kernel of truth to them. In other words, at its stripped down level, there is some science behind it. It’s just that they take this little bit and expand it to ridiculous lengths using faulty logic.

    So, for example, there is evidence that autistic children do not look at faces as often as non-autistic children, especially when the person is talking. This may contribute to them missing social cues. So, the scam then becomes the selling of magic glasses that will supposedly help to focus your child’s vision….or something (I wasn’t particularly clear on what the magic glasses actually did) and voila! Your child no longer has autism.

    Of course, the basic research was right, but the resulting product is based on a misinterpretation and misunderstanding and twisting of the evidence to ridiculousness.

    Another example: The chiropractic people claimed that pinched nerves can cause behavioral changes that might be atributed to autism. It’s a crazy conclusion, but for a person that knows just that there are nerves in the brain and that nerves in the body are connected in one big system, it can seem logical.

    The problem is that the little kernel of “evidence” is enough to make the whole thing really confusing.

    It’s easy to laugh about ridiculous things like the energy water, but other things are more ambiguous. Having just a tiny piece of the knowledge can really send a person off track. Separating the scams from the genuine was not as easy as it first seemed, and there doesn’t seem to be any easy way for parents attending these expos to easily separate the science from the fiction.

  6. I think a booth just about “how to spot bogus booths” might not be well received by some of the other vendors, but would indeed be just what that place needed. You wouldn’t be selling a product, you wouldn’t even be saying anything untrue, but damn, you’d ruffle some feathers for sure. I can’t wait to hear how that goes …

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