My daughter just informed me that people won't read my blog if it does not have hype because people like human conflict and readers will not have the attention span to read through a bunch of dry commentary about the sloppy and meager body of research related to autism. She is into writing and journalism and after hearing her out, it does make sense in this fast paced information age. This will be a challenge because the purpose of this site is to not incite emotions but to educate reader about the exaggerated claims being made by even the most popular and highly recommended producers of ASD interventions. The most popular interventions, including EIBI or Lovaas type programs based on the principals of Applied Behavior Analysis fall into this category. This is unfortunate for me because that have a rather "passionate" and organized body of advocates including parent advocates who have been carefully groomed and fed only the information producers want them to know about. Close behind them is RDI and Greenspan when considering only the mainstream interventions. They do not lie. They are not quacks. They use more nuanced methods which, for the proponents of the Lovaas products, are part of an aggressive marketing campaign for the past 15 plus years -designed to get "mainstream" acceptance of treatments that are in reality "helpful for some" but problematic on several levels. The EIBI strategy includes exploitation of the fact that the average parent or public service professional lacks the scientific background to tell the difference between good science and science that, well makes claims and "suggestions" that are not consistent with their data. There are several sources in the scientific literature as well as mainstream domains, to support my conclusions. I have just begun this site but eventually all of these sources will be made available for review and discussion.
In the mean time, I am wondering where to start. Do you want to hear about the many "strategies" producers use to influence your opinion or do you want to talk about the problems with the research and given those problems what the data can tell us-when hype is removed?
Dr. Good, Bad and Ugly
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I referred to a couple of stories claiming successful cures of autism earlier. Lo and behold they have disappeared. In my quest for something I did find these: http://www.recoveredfromautism.com/ long story short: a boy is diagnosed very early on as autistic. Through homeopathic diet and vitamins, couple cure their son. My question would be, is this a case of an incorrect diagnosis or maybe such a mild case of autism that vitamins are enough to cause the cure?
ReplyDeleteI believe this is a link to the story I mentioned earlier that had claimed incredible progress in the treatment of autistic children: http://www.cbc.ca/news/background/autism/selling-hope.html
the story profiles a Dr. Gordon Pomares who claims a 98% cure rate for her patients...
Something I find very interesting Dr. Good, is that when I first came upon the stories claiming the cure, they were front page (magazine and internet,) news. Now try as I might I can't find them... Is it just me or is the press so hungry to feed the ignorant public a little hope that they publish such snake oil claims, quietly remove them when proven false and then move onto the next fashionable subject? It must be heartbreaking for parents to see stories that offer such hope and then fail to deliver with the facts. I guess this must be what you mean by the HYPE.
Even if the children you mention from those media reports had received a more traditional treatment, it's really too early to tell for sure whether the improvement is from the treatmnt, other factors or the combination of the these. Even as early as Kanner's original Autism studies in the '30s and '40s there is documentation of gradual improvement in language and social skills among a subgroup of the children as they moved from preschool to middle childhood---in the absence of any specific intervention for autism. Now, when we talk about ASD, we are referring to a broader mix of children -- not just the classic Autism (Aspergers, PDD-NOS, other milder b forms, etc....)and with this a more complex pattern of symptom change over time.
ReplyDeleteThe research is suggesting that those with the high verbal and nonverbal IQs at age 2 years will show better outcomes and some will even move off of the spectrum, independent of treatment.
There are no well controlled, long term studies that take into account all of these factors. So, the child you mentioned above may have truly improveed based on maturation, intervention, or misdiagnosis at an earler age with or without the treatment. Here are some of many relevant studies and within each of those you will find additional references:
1. Autism From 2 to 9 Years of Age
Catherine Lord, PhD; Susan Risi, PhD; Pamela S. DiLavore, PhD; Cory Shulman, PhD; Audrey Thurm, PhD; Andrew Pickles, PhD
Arch Gen Psychiatry. 2006;63:694-701
2.Modeling Clinical Outcome of Children With Autistic Spectrum DisorderJames Coplan, MD & Abbas F. Jawad, PhD. PEDIATRICS Vol. 116 No. 1 July 2005, pp. 117-122
3.Kleinman JM, Ventola PE, Pandey J, Verbalis AD, Barton M, Hodgson S, Green J, Dumont-Mathieu T, Robins DL, Fein DJ. Autism Dev Disord. 2008,38(4):606-15.
4. Variability in outcome for children with an ASD diagnosis at age 2. Turner LM, Stone WL.J Child Psychol Psychiatry. 2007 Aug;48(8):793-802
5. Autism spectrum disorder in the second year: stability and change in syndrome expression.
Chawarska K, Klin A, Paul R, Volkmar F.J Child Psychol Psychiatry. 2007 Feb;48(2):128-38