How Many Therapies Does it Take to Treat Autism?
April 17, 2009 by Claudia Wallis
Apparently more than 400. According to a survey conducted last summer by psychologist Raymond Romanczyk and his graduate students at the Institute for Child Development at Binghamton University, there were 414 different types of autism therapy described, promoted or cited on 16 major websites (including Autism Speaks, CDC, Wikipedia, Autism Society of America). By now, he said in a lively and provocative talk at today’s Mind & Body in Autism conference at Teachers’ College, Columbia, there are doubtless even more. To add to the confusion, the ones that come up most often in online searches tend to be those with the weakest research base: special diets, art therapy and the like. In an evaluation, Romanczyk’s team found that fewer than a quarter of these treatments had any kind of evidence base. The internet is essentially worthless” to families looking for good information on autism treatment, says Romanczyk.
I was not impressed. I rattled off the following response and commented on the website where I found the article:
I highly disagree with the worth of the Internet for a family who has a child with autism. Things the “experts” are not considering:
1) It takes 6 months to get in to an “expert” for initial diagnosis, early intervention is critical, a family needs information in that absence of that professional.
2) You do get an appointment with a professional, and that’s it. You are not provided a prescription or recommendation for treatment options, or are not given specific enough information.
3) You have your diagnosis, and recommendations, but you have no idea how to get the resources you need in place. to obtain said treatment.
4) There are professionals who believe in a one-size fits all approach even though no two children on the spectrum are alike.
5)Professionals want families to only try scientifically validated treatments when so few treatment options are validated, and those options are limited in availability and outcome.
6) Autism is a snowflake disease - what works for one child’s particular symptoms may not work for another. Has anyone considered no single cause/no single cure?
7) How do you create a control group of autistic kids? As the saying goes: “You meet one kid with ASD, you have met one kid with ASD.”
8) I am all about ABA - but without some of the other treatments, we know that our son would not have come as far as he has. It is anecdotal, but these commonly referred to as “alternative methods” are evidence based - indeed we have tried various treatments and carefully noted what appeared to help and what didn’t. We used a risk assessment and studied ARI information, discussed with professional (MDs, therapists, PhDs) before attempting and carefully documented any noticeable affects after starting. We did not notify therapists to see if they would comment on his performance during sessions (blind test). We also sometimes stop a treatment to see if some of the previously reduced symptoms reappeared. Not absolutely scientific, but methodological.
9) There are lots of support groups with an Internet presence and these are sometimes the most invaluable resource to a family.
While the information is abundant, not necessarily concise or sometimes just out and out bizarre, I am grateful that I have Internet access to information regarding autism. We no longer live in the cave age where just to get a doctor to diagnose a child on the spectrum could take years. Judicious use of the Internet is an essential means of information gathering for our family, and if I were to hazard an unscientific guess, countless other families.
I feel the medical and psychological community are sometimes threatened by the empowerment families have that come from resources highly available on the Internet. Please do not tell a family what worth something has. Worth is a highly subjective quality - not a measurable variable on your histogram.