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Buyer Beware: Giving it Away Doesn’t Mean it Works

August 29, 2011

I recently wrote a piece on various listening therapies that ran at Science 2.0 and at TPGA. The most comments for the piece were at TPGA, and one in particular bears greater scrutiny.

First, though, a quick summary of my conclusions regarding listening therapy based on the literature:
The AAP rejects listening therapy/auditory integration training as a recommended therapy: “Their use does not appear warranted at this time, except within research protocols.” My suggestion to parents was that they answer a series of questions before choosing a therapy:

Even without this research to rely on, parents can evaluate these programs by looking for a series of red flags that indicate a potential problem:
Does the program promise to recover your child from autism?
Are the total costs hidden?
Do you have to buy special headphones and special equipment?
Is the program prohibitively expensive?
What evidence do they offer? (website articles and testimonials do not count as good evidence)
Not surprisingly, the article was not well received by one of the companies, and the following comment was left at TPGA:

Hello Kim,
I want to let you know that we at Vision Audio, the creators of the Electronic Auditory Stimulation effect (EASe) CDs, NEVER claim a cure for autism. We don’t sell expensive equipment and we have always given away our products to non profit organizations. EASe CDs have been used, virtually without complaint, by many tens of thousands of parents, professional therapists, teachers, school systems, state organizations, ASA’s all over the country, and hundreds of non profit groups since 1995.
Also, please know that achieving a study at a major university is extremely difficult. Our EASe Games are being studied this fall and it has taken four years of hard work to get to that point. We hope it will take less time to get our upcoming EASe app for the iPad and iPhone under study! In addition, Vital Sounds techniques were studied in 2007 and found effective in the treatment of autism.
I would also point out that there are no therapies in the treatment of autism that have been sufficiently studied to be declared the only effective method available. The 550 child AIT study done by the Autism Research Institute in the mid 1990’s appears to be one of the largest ever done and the conclusions were positive.
So are we who have made it our life’s work to help children most at risk in our society, supposed to stop innovating until products and processes we developed fifteen years ago can be tested in the VERY suspect modern theater of peer review? I hope not.
If you would like a set of EASe CDs, or EASe Games or even the upcoming EASe iPad app to test for yourself instead of having to rely on second hand information, I would happily send you a set for review. Please let me know.
Best regards,
William P Mueller
Vision Audio Inc.

My response to him, there, is as follows:

Bill,

You write, “I would also point out that there are no therapies in the treatment of autism that have been sufficiently studied to be declared the only effective method available.”

Now, I have to wonder why you phrased it this way. My piece doesn’t argue there’s one effective method and only one. My piece also doesn’t claim that your method promises a cure. It is a post about listening therapies and auditory integration training and the lack of evidence of its efficacy as a treatment for autism.

It is, sir, irrelevant, that you give it away free to some people and that tens of thousands have used it without complaint. That doesn’t mean it actually works at mitigating core deficits in autism.

Not all research is funded or conducted by universities, also a red herring. I would submit that PARENTS might feel they do not have the time to wait for research, and that they should be diligent. If it’s inexpensive, has little chance of causing harm, and is plausible in its mechanism, then the parents should go ahead if they so choose.

Companies selling a product and making claims, though, don’t get the same leeway. You’re making the claim–substantiate it. Show that it works. Reliance on testimonies and appeals to popularity while engaging in strawman arguments doesn’t show your product is effective in doing what you claim it does. And parents, when that is the level of evidence provided, would do well to pay attention to the advisory warnings that medical organizations offer about various treatments.

“So are we who have made it our life’s work to help children most at risk in our society, supposed to stop innovating until products and processes we developed fifteen years ago can be tested in the VERY suspect modern theater of peer review? I hope not.”

I hope that parents looking for treatments to mitigate troubling behaviors and symptoms will carefully evaluate claims before investing. I hope they will be aware of the various fallacies that are often employed to sell product. I hope that parents will read claims like this and see through them. Let’s label this one an appeal to martyrdom followed by an ad hom. Which is it–university-run studies are hard to do or peer review is suspect?

Again, my recommendation to parents was to be wary. If it’s inexpensive, plausible, and offers little chance of harm, go for it.

On the other hand, if there’s lots of unsubstantiated claims, fallacious appeals, and the theory behind it is implausible, then think twice.

Parents are inundated on the internet with various therapies, all promising to make their kids better. Many of these companies selling the therapies rely on testimonials to sell their products. Not all companies go so far as to claim a cure, but some do. Many offer miraculous recovery stories.
Many of these companies get various therapists to use their products by providing them free. Get a toehold in, get therapists using it, and you’ve got another way to influence parents and sell product.
Parents need to be skeptical. They need to think critically and evaluate claims. When claims are made but no evidence is offered to back these claims up outside of testimonials, parents should be wary. They should think twice.
If the product is inexpensive, if its mechanism is plausible, and if it’s not likely to cause harm, then I can see no reason to say not to try it. Would I personally try it if the AAP has come out and said it shouldn’t be used outside of research, that there’s no evidence it works? NO.
There is no evidence that the underlying cause of autism is an auditory integration disorder and that these products will resolve that issue. There is no reason to believe that these products will work in mitigating autistic symptoms that cause the individual distress and dysfunction. In other words, the underlying explanation for the product is implausible, and parents spending their precious resources and time in pursuing these products are likely wasting those resources and their time.
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One Comment
  1. August 29, 2011 7:36 am

    Well, I used eASE audio discs. I looked at the study, and possible negative outcomes associated with it. I spoke with a Speech Path and had to beg to have an initial test done of Ben’s hearing. It was very acute at 2,000 hertz (? I don’t recall exact nomenclature) the sound of a woman’s voice.

    The discs were free. We had to buy a disk player that did random selection so “he wouldn’t aclimate to the sounds.” I knew there was a danger of being too loud, and causing damage, seems volume is standardized and we never put it over 2. Ben did lose sensitivity to his speech teachers voice, and for the first time, joined them in a session where he had previously ran and hid.

    Nobody has any real answers. We all just bumble along, doing the best we can. I always tried to give Ben the best I could, but we didn’t go into debt. If it was too expensive, it wasn’t necessary. I am with you that people do go chasing miracles, to the detriment of their families finances. I find it sad, and although I can sort of understand it, we always just made do with what we could afford.

    Things don’t change much. I had an uncle who developed severe epilepsy after being cracked in the head with a baseball bat. A rich aunt enabled him to go to a special school that would “cure” him, while it cost more than grandma and grandpa made in a year. It did no good. Eventually, he underwent a brain operation that allowed him respite. This was perhaps 90 years ago.

    The greatest sadness for me in my old age would be to be a medical burden to my family. If you can’t afford it…it’s time to get real. I agree with what you are saying, but I did find the discs helpful.

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