Being involved parents of an autistic child, my wife and I go to many different groups and meet lots of other parents of children with PDD (Pervasive Developmental Delay) or ASD (Autism Spectrum Disorder). I am used to the barrage of pseudoscience and misinformation from well-meaning parents (e.g, anti-vaccination, chelation, gluten-free diets, etc), but I have always expected that professional Occupational Therapists (OTs) would steer us towards evidence-based treatments. They have certainly been critical of many of the common autism myths, like the vaccines and autism non-connection. Unfortunately, my expectations were overly ambitious, and I let my skeptical guard down.
Our older son is very sensitive to loud noises and gets upset quite easily. He seems to have a lot of sensory issues both tactile and auditory, and addressing sensory issues is a large part of what OT therapies work to alleviate. Our OTs recommended that we try some Therapeutic Listening® therapy, which plays somewhat dissonant synthesized music that sounds like back-masked music rapidly oscillating in volume. I was a bit skeptical, but we tried it anyway because (1) they lent us the special headphones and CDs, (2) I didn’t think it would hurt, (3) I didn’t have the time or expertise to look into the research, and (4) multiple OTs told us to try it. Besides, it seemed a bit plausible that people sensitive to noise could be desensitized by listening to something dissonant and random on a regular basis, and we are REALLY struggling with these noise sensitivity issues at home.
It wasn’t until my 5-year-old broke these rather unremarkable Therapeutic Listening® headphones and we needed to replace them that I took some time to look into this. These headphones, with the construction and sound quality of a $30-50 pair, are sold for a whopping $145! They are one of only two approved headphones for this program, and they seem to only be sold through one place, Vital Sounds.
Being a bit of an audiophile before kids, I looked into the specifications and features to see what made them special. Of course they advertise meaningless features like “BioNetic design”, and other things that are wholly unimpressive like “9.8-foot single-sided OFC (oxygen-free copper) cable” and “Supra-aural, semi-open aire design”. The only thing that is somewhat unique is that they have a frequency range of (18-30,000 Hz), whereas most headphones stop at 20,000-22,000 Hz on the upper-end. Since humans can’t hear above 20,000 Hz normally (nor can CDs play sounds above that frequency), this isn’t such a remarkable feature to go up to 30,000 Hz. In fact, Sennheiser made almost the exact same headphones for about $50 with a 14-21,000 Hz range, (quite suitable for humans), which does not have the 150 Ohm impedance that makes them useless on portable devices.
Being annoyed at having to pay $145 for headphones that are worse in many ways (except that dogs may be able to appreciate them more) than my $50 Sony headphones, I dug a little deeper, where the non-sense only grew. You find some web sites saying you can’t even copy the CDs and have to play off the originals. It is said that this is about sound quality, but the writer obviously lacks an understanding of what it means to copy digital information. However, I could see an incentive from the company that sells these CDs for $60 a pop to propagate such a myth. Needless to say, giving little children original CDs is a bad idea. Of course, you can buy their lossless encoded versions on SD cards that can be used by certain music players at a premium, but they warn against ripping CDs to your own players because any compression could make them ineffective (regardless of whatever other magic is used to get 30,000 Hz sounds recorded onto a CD). Considering the open air design of the headphones and the fact that you are supposed to do listening therapy while performing other tasks, I would challenge anyone to tell the difference between even highly compressed mp3s and lossless encodings. This says nothing of higher quality, lower compression formats like 256kbs ACC.
The more and more I read, it just sounded like a couple of companies want to sell overpriced CDs and headphones, by controlling the distribution of “approved” devices for their therapy. A further red light was the range of things this therapy was claimed to help, such as, “improved bowel and bladder function“. More troubling, many of the sites promoting this therapy promote other quack therapies and misinformation to parents of autistic children with a strong emphasis on anecdotes and personal experience. All of this made me wonder about effectiveness of this “scientific” therapy in the first place, setting aside the over-priced hardware and non-sense about audio electronics.
The best, and one of the only sources of skeptical information, I found was at a blog called Autism Street. It is there that I learned that there have been Cochrane reviews and other meta-analyses of this whole field of therapy for autistic children, reviews which find no support for the claims of the companies selling these or the OTs promoting them. Sadly, the best support I found for the therapy was a student paper that basically acknowledged all these issues, but argued that we can’t rule out that there isn’t some effect on a special subgroup and lamely argued that more research is needed.
Needless to say, I am frustrated that tax dollars pay for this pseudoscience and disappointed in what I have discovered about some Occupational Therapy modalities. But I learned several things, and I can make some lemonade from these lemons.
First, pseudoscience can cost you money, even when you never expect it to. Sometimes “just trying” something will hurt. For example, your child could break the over-priced pseudoscientific contraption at the chiropractor’s office. This is irrespective of the fact that most times you cannot “just try” something to reliably infer that it “works” in any sort of controlled and unbiased way.
Our OTs are great people, but it seems like their field is infiltrated by a fair amount of non-sense. So I don’t really know what to believe from them anymore, and I certainly dismiss the less plausible things they say even more readily now. This should have been no surprise, as we see this in many other health care fields. Nurses have therapeutic touch, and OTs have Therapeutic Listening®. I was talking to a good friend who is a physical therapist, and he was telling me how he is endlessly fighting against crazier non-sense infiltrating his field on an almost daily basis. So this whole thing reminded me, in a personal way, that a therapist does not a scientist (or even critical thinker) make.
More importantly, it made me realize how much it helps to share these things, and that there is something that even I can do. This whole event has caused me to gather my thoughts, think about the problem and engage in skeptical activism as a new blogger here at Science-based Parenting. My hope is that others can learn from my mistakes, and maybe, just maybe, someone will find this blog entry when they are investigating this dodgy therapy.
Finally, I learned that Sennheiser has a really nice guy working in the parts department who is sending me a free part to fix the headphones.