Wednesday, August 29, 2012

Autism Research Community's Failing Grades: Vocational Interventions Research

"In the end, the researchers found only five studies that focused on vocational interventions. While this handful of studies looked at certain on-the-job programs designed to support young adults with autism and suggest these "interventions" can improve quality of life and reduce symptoms of autism, the study authors concluded, "all studies were of poor quality." They say these studies had serious flaws including the randomization or comparison groups, which makes it difficult to draw any conclusions. Lack of follow-up and the fact that most studies were small also contributed to the researchers' deeming the quality of the research as poor. The study was published Monday in the medical journal Pediatrics. 

Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, says she finds it remarkable that only five studies that address vocation skills were published in the last three decades and all were of poor quality. "There is a tremendous knowledge gap regarding how to help young people with autism be successful in the work environment," Dawson says."

Evidence weak that vocational programs help young adults with autism, CNN, August 28, 2012

This information does not indicate that vocational interventions are not effective. What it indicates is that the autism research community has not bothered to conduct any serious research to evaluate those interventions. The autism research community has its obsessions and it pursues them doggedly even when the results don't support their particular obsessions. But those obsessions do not necessarily result in quality autism research. 

We all know that within the next couple of years the "Mottron group" will publish more studies telling us how autism is just a different, in some ways superior, type of intelligence, one that can not, and should not, be cured. There will be more studies about the genetic bases of autism without ever pinpointing specific genes or genetic groupings that explain the diverse types of autism disorders as they manifest in so many individuals. The environmental side of the autism equation will be ignored. No new treatments or cures will be explored. 

The autism research community has done little to advance our understanding of what autism disorders are, how they are caused, how to treat or cure autism disorders or even, since Lovaas, how to assess or evalute interventions. The review of vocational autism research is just one more failing grade for the autism community that puts up lots of posters and makes grand speeches at IMFAR conventions in hotels around the world but really does little to help the lives of those who actually suffer from autism disorders. 

I realize how pessimistic this comment is. My son was diagnosed 14 years ago at age 2. I have seen many hopes raised and false starts made but I have seen little lasting progress in the past 14 years. Instead of progress we have a new definition of autism disorders scheduled to arrive in the DSM5 that will do nothing to improve the lives of those with autism and will not advance diagnosis, treatment or cure for autism disorders. The world autism research community has been talking in circles since my son was diagnosed studiously avoiding the tough research issues but achieving nothing. 

Yes my comment is pessimistic. I would love to be wrong about this. I would love to see some substantial breakthrough in understanding autism, how it is caused, how to ameliorate its challenges for my son and others, breakthroughs in treatments and cures. I do believe that progress must be achieved through research but as my son grows older I do not see the qualitative results, beyond the work of Lovaas and those who followed his lead, of any such research to date. Perhaps a review like this will help those at the IACC and other autism research leaders face some autism reality and improve the direction and quality of autism research.

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