I stumbled across a Web page billed as “a plethora of information about autism interventions all in one place!” The site is maintained by a person who identifies herself as “Liz.” Liz refers to lots of therapies. Here’s partial list from the page:
- Behavior
- Communication
- Social Stories
- Auditory Training
- Music Therapy
- Vision Therapy
- Medication and Autism
- Cranio Sacral Therapy
- Facilitated Communication
- ‘Son-Rise’-The Options Institute
- Physical Therapy
- Pivotal Response Training
- Play Therapy
As far as I know, apart from the first one (discrete-trial training) or two (augmentative communication), the research on these therapies is quite weak. Of course, I don’t keep up with all the research, so I could have missed something indicating that cranio-sacral therapy (a variation on chiropracty), for example, is actually helpful. Also, I didn’t read through all the pages.
I should note that the author also has a link to a page providing guidance about evaluating therapies; it provides ideas that are defensible for the most part. On another page she provides a list of questions to ask, one of which refers to scientific evidence. Sadly, though, these pages do not debunk any of the therapies in the list. Simply put, there is no critical analysis.
Liz enters appropriate disclaimers (”BBB Autism does NOT endorse any particular therapy or intervention. We DO, however, endorse your right to learn about them!”), but listing these therapies without evaluation consitutes an endorsement of sorts. Each time facilitated communication, for example, appears in a list such as this, it gets some cachet. When they are mentioned repeatedly, parents (and, unfortunately, some teachers) get the idea that there must be something to these therapies.
We need some system for helping consumers to discriminate between those therapies that have some minimal level of empirical support and those that have, at best, testimonials. How can we create that resource and, equally importantly, how can we disseminate it to parents and teachers?
Link for the discussion of therapies, link for questions to ask, and link for the overall Web site.
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While it is noble to be as scientfic as possible with autism interventions, my many years of working with autistics made it clear that was impossible. There aren’t any scientifically valid interventions for autism. You mentioned discreet trials. I used them ad nauseum and they did little good with the adult autistics and studies also don’t validate it for the younger autistics.
Most interventions do help in the sense they are structured and positive. Autistics like both and may show some positive behavior change just for that reason. Most of the day with autistics there are no scientific interventions used.
The best intervention I used by far was the most controversial of the iinterventions, facilitated communication (FC). I know how it looks and I know all about the double blinds and can understand folks being skeptical. But for those who have used it and seen the positive dynamics it creates and increased “choice and control” either with FC or other “augmentative communication” like picture books, FC was an absolute boon to our programming and I never saw such positive behavior change (well measured ICF program) in my 30 years working with autistics. Plus, they were really saying all those things folks were getting from FC. How true the content of their communication was or what it all meant, well, until we use FC more and study it then we won’t know…will we? It’s also harmless, and even if it wasn’t valid, it has great therapeutic spin offs. In autism that is the bottom line for workers. For those who don’t work with them directly like researchers, pros and skeptics, they can affford to be skeptical and diss the intervention. The folks closest to autistics can’t afford that luxury and that is why all parents and workers insist on using whatever “works”. However, even most of them have been affected by the controversy and skeptics and aren’t using FC. It is a HUGE tragedy.
Tom Smith