Posted by: slagell | March 6, 2011

Hi-Fi pseudo-sci, Occupational Therapy, and making some lemonade

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.

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Responses

  1. Yay! Another dad!

    Thank you for the great article. I remember many of those types of discussions on an email listserve I was one for my son’s disability years ago. Sometimes you had to wonder at the credulous parents who believed everything, to the ones (like me) who questioned everything.

    Unfortunately, D’oC is no longer updating AutismStreet, but he does write the occasional article at http://leftbrainrightbrain.co.uk/ .

  2. We had a similar experience with my son’s former OT. We did the “Therapeutic Listening” for a while, then abandoned it when it didn’t seem to make any difference, and our son hated wearing the headphones. I later made similar discoveries to yours about the lack of evidence for it. The same OT also recommended we see a naturopath.

    Our new OT has not recommended anything “wooish,” but I did hear one of his partners earnestly recommending the GFCF diet to a parent who was skeptical, not least because she said her son ate so little to begin with.

    It’s discouraging, because OT has been one of the things that has provided the most visible help to my son, who, in addition to PDD, has dyspraxia, and I highly recommend it to parents of children with similar issues.

  3. Thanks for informing us about this. I’ve heard both good and bad about listening therapy and wondered about it.

  4. Hey now! I’ve been a pediatric Occupational Therapist for 11 years now, and have always prided myself on evidence-based practice. In addition, I have two boys on opposite ends of the Autism Spectrum (boy did that rock my practice perspective!!) and have been in the same boat with trying woo-woo things that other professionals AND parents have sworn by. I feel your pain, but I have to caution over generalization.

    I understand your experience was frustrating for sure. As with any provider of services there are good ones, and bad ones, lazy OTs and dedicated, ditzy and rigid, friendly and um, very very cranky. We also put ourselves out there to be judged, every day, by the people we serve. –Which as I think about it here, is great: it keeps me on my toes. My brain is TIRED after a day of work –I am constantly thinking and referencing my neurology, neural chemistry, anatomy (etc.) training. My masters degree was not handed to me. I know it looks like I’m having a GREAT time playing with the kiddos, and I am, but my brain is churning away in there, interpreting every move that child makes and adjusting my next step.

    But in my defensiveness I digress; About the therapeutic listening program: I too was a big skeptic until I went to the training, at which point I was pretty convinced that it could be beneficial. My husband also being a big audiophile, we discussed it at length when I got home from the conference and came to the same conclusions as you did about frequencies, compression, and copying data. In short, yes, it seems very much like a racket.

    I tried it with my oldest son, buying a “close enough” version of used Sennheiser headphones on ebay. It gave some nice results, but nothing long term. My youngest (more severely affected) had some results as well, but would not wear the headphones for long. I didn’t push it as there were other priorities in therapy (and sanity survival -for a therapist, I am the worst “home program mom”, ever.)

    So while other therapists swear by the program, I use it with caution. I also tend to look the other way after dropping a hint as I send the CD/mp3 home with parents that they of course would NEVER want to burn it and if they happened to then I know nothing about it… I too, get really frustrated about the profit this company makes off of a 2-cent CD.

    I HAVE seen, with my own skeptic eyes, some very amazing responses to the listening program, which is why I keep trying in in addition to the other modalities that I know and love.
    As a parent and a professional, it breaks my heart to have new parents come in and be in that place where they are grasping for something, anything to fix their child. I hate being the person to dispute the immunization, GFCF, and mercury theories, but often I am the ONLY person in the medical field who will address it since I develop a relationship with that family week after week, unlike their pediatrician.
    I love this blog for that reason, and have for a long time. The support for the scientific parent and therapist is SO needed. Please don’t dismiss me or my profession from the discussion, even just if in the recesses of your minds!
    Thanks.

    • I have to agree with JoannaB’s post. Like her, I’m an OT and a parent of a child with autism.
      My son has made amazing progress with the Therapeutic Listening Program (TL). Because of this, I invested a lot of my own money in the traning and the equipment so that families and their children will be able to benefit from TL without any financial burdens prohibiting them from trying it. (Nobody ever provided this for us, so I’m happy that I’m now able to do this for others.)
      It sounds as if this may have been the case for the “skeptic” parent blogging about this as well. If I understand it correctly, their therapist provided them with all of the equipment and there was no issue with using the program as long as there was no charge. Then when a sibling broke the headphones and the therapist wanted them to be replaced, everything changed- including the perspective of questioning whether or not the therapy is effective. Free=I’ll try it even if it might not work. Broken=I don’t want to pay for this because it is too expensive to replace; oh, and some people don’t even think it works.
      If I’m loaning you some of my equipment that I have paid for, it is your responsibility to take care of it, no? Expensive equipment or not, caring for someone else’s belongings does not include allowing a 5 year old sibiling to play with headphones. Your therapist trusted that you would take care of her equipment and seemed to genuinely be trying to help your son with his auditory sensitivity. In return for this, she was rewarded with a blog questioning her methods and a huge dismissal of her profession.
      Also, Vital Sounds isn’t the only place where the headphones can be purchased, and they can be purchased elsewhere for less as can other types of equipment used in TL. It seems that Sennheiser might have told you that when they spoke to you on the phone, but I guess it wasn’t necessary when their very nice representative solved your problem for free. But hey, take a few jabs at your OT anyway.
      It is frustrating to find dismissals of effective OT interventions that regularly produce nice results for the kids I see. I’m so tired of hearing that there are no studies to support sensory processing work- there are now a number of these studies. And Therapeutic Listening IS a sensory processing intervention.
      Like JoannaB, I have seen amazing results in many children with the Therapeutic Listening program when it is followed exactly as recommended- fortunately my own son is included in this group.

  5. We used the headphones with great success, with all therapy, especially with sensory children, it has to be individualized. what works for one my not always work for another, also what works one day might not work the next. You do realize that sensory integration therapy is not evidence based, yet it is the primary treatment modality for autism

  6. I was told that we could use a simple CD player with a shuffle and hold button for my daughters therapy. After reading your blog and a few google searches later, I came to the conclusion that you are completely right… no CD player can have an output over 20,000hz!.Why buy a hi-frequency headset when even the CD player can’t put that frequency out! Even if the CD’s could contain that frequency, the player would need to be capable to translate it to sound. I feel like a complete dope!

  7. Found this review of Sensory Integration Therapies in general. Granted it is from an insurance company, but it does confirm my skepticism of this therapy. In this case, I actually think it is worse since CDs as a format are incapable or reaching the frequencies that they designed the expensive headphones for. So there is most certainly at least some quackery here, though it doesn’t logically rule out that the therapy may work but with normal headphones, too.

    http://www.aetna.com/cpb/medical/data/200_299/0256.html

  8. PDD stands for pervasive development disorder, not persistent development delay as the original post states.

  9. When my son’s OT suggested that he try the Therapeutic Listening program during school I thought it sounded pretty strange and she did say it works for some but not all. Of course I would try anything so he listened for 30 minutes 5x a week for 12 weeks in school. Within weeks I noticed a change in my almost 3 year old and I was shocked. His whole demeanor changed as well as his language. Before the therapy his expressive language consisted of echoalia along with jibberish. He also wasn’t crashing/jumping etc. for input constantly which is something he did since he was a baby. Now of course it didn’t cure him but I was thrilled with the results I saw and continued therapy for the 12 weeks. After the 12 weeks we stopped. Immediately, within a week or 2 I saw him regress. Especially his language, he would talk and then go back to a lot of jargon/gibberish. It was kind of scary, the teacher’s and therapist noticed the regression too so of course he was put back on it. It took me a while to buy the equiptment but with the results like we had of course I had to get it for home and do the recommended 2x a day. Anyway, even now having it at home I listen to it for a minute and yes it seems totally bizaar but hey it works for us. On another note, there was a CD that he responded negatively to while using it in school. Both my husband and I as well as the teachers noticed that he just did not agree with that CD, we told them to immediately change it and never use it again. Now of course it could have been something other than that cd but he did get better when the CD was changed. I just this week had the same situation happen. The 1st 2 weeks were great, the 2nd day of the other CD there was a noticable change for the worse in him. We took that CD out right away. Sounds completely crazy but Autism Spectrum is so complicated and their symptoms are so complex that you just have to do what works and go w/ your gut. Now, do I think that maybe I could’ve bought cheaper headphones and copy the CD’s??? Probably, BUT I wouldn’t because it’s my kid and I would just rather listen to the professionals and not do it. It’s not like they are for enjoyment, that would be different. Please don’t be so quick to blog about your experience when every kid with this disorder is different and responds to different things. Gluten/Casin free never did a thing for my child but that doesn’t mean I don’t believe it greatly benefits another. I hope parents that have not tried the Therap. Listening and are thinking about will not be turned off by your blog, that would be terrible.

  10. Our experience was just like Carina’s experience above…add to that our son was always vomiting (sensory overload) and having violent outbursts, injuring others and himself. At the time it was believed he had an extreme case of autism. Just like Carina’s child, on the listening therapy our son became more calm, centered, and aware. He began to speak, he finally began to allow food into his mouth, avoiding the dreaded g-tube (which he probably would have ripped out) the Dr.s were talking of putting him on. He was no longer violent. We had first tried the therapy through an Elk’s charity program that did it for free along with providing a free OT. Anything used or broken did not have to be paid for by us. I too was skeptic, but like you, since it was free, we tried it. From our experience with our son, with his issues (SPD, Apraxia of Speech, chromosome 12 deletion, (Autism?)) this therapy seems to have helped very much. It has been a year since he’s been on that program, and like Carina’s son, when he is off it he regresses. On it he’s a whole other person. If you were to see him now you would not be able to tell the difference between him and any other neurotypical child. This is a stark contrast from the beginning when he acted and behaved as (best way I can describe it, sorry) either raised by wolves or possessed. His progress has shocked everyone and exceeded their expectations. As a 3yr old who has never been to daycare/school he can now read, spell, knows sign language, colors, numbers, shapes beyond the basics, etc. (something he could not have learned from me if the therapeutic listening did not help him) He still “zones out” sometimes, and is really fascinated/distracted by mirrors, but that’s nothing compared to what issues he had before.


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