Tuesday, December 16, 2008

Couldn't Sleep Last Night

The Airtalk (KPCC 89.3 FM) panel on Autism Treatment hosted by Larry Mantle was recorded last night and I had a hard time sleeping afterward. Larry was a very gracious host and certainly knowledgeable about the subject. He seemed quite interested in letting the audience know about ABA and how it works and how it is different from other treatments.

I must say it was upsetting to hear some of the information being presented by panelists. It was unfortunate that the first speaker who discussed ABA presented it in such a narrow way (e.g., done primarily at a table, not involving parents, working on limited skills, etc.). As I said, it is unfortunate that rigid and poor quality ABA does exist but good ABA can be both systematic and implemented in a natural and child-friendly way.

I was even more disturbed regarding the panelists’ continual discounting of solid research and the promoting of interventions that have limited to no data and in some cases has even been shown to be ineffective or harmful. For example, there is only one study on Floor Time. This study is riddled with fatal methodological flaws (e.g., published in Dr. Greenspan’s own journal, no experimental design--simply case reviews, no independent evaluations--the reviews were conducted by his own graduate student, no identification of the outcome criteria, etc.). The discussion regarding Gluten/Casein free diets could have sent parents on the wrong track. There is actually no research showing that children with Autism have a higher rate of gastro-intestinal problems. The only quasi research study shows actually that the rate of this problem is actually less than the general population. Additionally, the only experimental study conducted shows that the diet was no more effective than a placebo. Furthermore, there is a total lack of understanding that perhaps those children that do have such problems perhaps it is a result of their very unusual eating patterns. In other words the G.I. difficulties might be the result of autism rather than the cause of it.

A pediatrician on the panel asserted that one does not need to rely on research because one can be guided by one’s personal clinical experience. I find this an extremely dangerous position. As I commented, this is why parents have all too often subjected their children to an array of intervention, some benign and some dangerous, but almost all wasting the precious time children have. Some of these interventions (e.g., music and dance therapy) may not be “dangerous” but they can take away time from the intervention that is effective. Others are even more problematic (e.g., Sensory Integration) because they undermine the effectiveness of proven intervention.

I fear parents who listened will be swayed by the charisma and passion of the panel members, will not recognize the misinformation, and ultimately their children will suffer. The bottom line is that children can make amazing progress as long as they receive the correct intervention. We are gratified that yearly we can graduate children from our program because they have become indistinguishable from their peers and most importantly are fully on the road to enjoying a high quality of life!

All that being said, we think people should listen to the podcast from the show which aired on Dec. 18, but we urge listeners to carefully and critically evaluate what is being said. Interventions can be appealing but lack substance and without being scientifically minded it is easy to be fooled into thinking that something makes a difference, when it is mostly an illusion. You can find the podcast (Real Player format) at KPCC’s website, but it is divided into three parts and the first hour has about 20 mins. on a different topic. We converted the podcast into a single MP3 file which contains only the Autism discussion. Both downloads are available at: autismpartnership.com/ap_media.html


1 comment:

  1. I imagine it was difficult to convey objectivity without seeming heartless. Much of what is being promoted in the autism field is based on emotional appeal rather than rational evaluation and scientific scrutiny. Parents and professionals can easily be swayed into following approaches which produce good feelings but may not make meaningful difference in the long run.