You have seen the autism recovery story in the media. Bloggers have jumped in too. I was at IMFAR 2009 in Chicago and saw the educational symposium presentation by Deborah Fein that was the stated cause of all the excitement.
But in her presentation, as in her abstract, Dr Fein did not associate the findings she reported with any kind or quantity of autism intervention or treatment. When speaking at IMFAR, she expressed doubt that this in fact could be done.
Dr Fein clearly added more information when speaking with the media. She expressed her view that recovery from autism, what Dr Fein calls "optimal outcome," was associated with early intensive ABA-based autism interventions. Like all researchers, she is free to say what she wishes to the media.
However, her statements relating kinds and amounts of intervention to outcomes in autistic children are not supported by any of the data she chose to present at IMFAR 2009, either in her oral presentation or in a series of related posters.
Indeed her study design does not permit any conclusions about effectiveness of interventions, no matter how "effectiveness" is defined. She has not conducted a true experimental design in which well-known sources of bias can to some degree be accounted for and therefore the effects of interventions, their benefits and harms, can usefully be assessed.
In order to claim that conclusions can be drawn about the effectiveness of interventions in Dr Fein's study, as it has been presented, you have to be willing to reject and discard even the most basic standards of science. These are the basic standards that automatically protect and benefit nonautistics, the basic standards that were developed because without them people were harmed.
Two other aspects of what Dr Fein presented at IMFAR 2009 are noteworthy. One is that a major paper in the literature, published not long ago, reported a very high rate of what is now being called recovery from autism. To my knowledge, this paper did not make headlines.
Turner and Stone (2007) were looking at the stability of autism diagnosis at around age two years (mean age of 29 months). They carefully used various combinations within what is considered the gold-standard diagnosis: ADOS, ADI-R, and clinical judgment. And they found that early diagnosis, in their sample of 48 originally autistic children, was very unstable.
By age four (mean age of 53 months), only 53% of children originally given the specific diagnosis of autism retained this specific diagnosis, while only 68% were still on the autistic spectrum. The rest were not. That is a 32% rate of "recovery." Only 40% of children originally diagnosed with PDD-NOS at age two still had an autistic spectrum diagnosis by age four. That would be a 60% rate of "recovery."
The children whose age two diagnoses were unstable were largely still regarded as having difficulties, a finding that echoes Dr Fein's work, but they no longer could be diagnosed as autistic.
Turner and Stone (2007) attempted to associate instability of diagnosis (what is being called "recovery") with interventions received, but no association was found. They report:
All children in the sample received speech therapy, and the majority received additional interventions. There were no significant differences between the Stable and Change groups for the amount of speech therapy, t(46) = .30, p = .77, behavioral therapy, t(46) = .78, p = .44, occupational therapy, t(46) = 1.90, p = .06, special education, t(46) = 1.96, p = .06, or regular preschool, t(46) = .13, p = .90. Of the 6 children who received an average of 20 or more hours of intervention per week, 5 were in the Stable group and 1 was in the Change group.In other words, few of the 48 originally autistic children in this study received what would be considered "intensive" intervention, and the majority of those who did kept their autism diagnosis.
In contrast, Turner and Stone (2007) found that diagnostic instability was related to earliness of diagnosis: the earlier the diagnosis, the more unstable it was.
The authors go on to discuss what may underlie the diagnostic instability they found while using the best available diagnostic standards. In fact there are many possible explanations. One point they do underline, however, is that given their findings,
...extreme caution must be taken when interpreting intervention findings that suggest ‘cures.’And of course that would include intervention findings that suggest "recovery." This may be all the more so when diagnosis, and therefore intervention, is very early.
Also noteworthy is Dr Fein's use of the term "optimal outcome," a term she prefers to "recovery." Dr Fein and her colleagues have determined the criteria for optimal outcomes in autism, and these criteria assume that autistics who remain autistic are suboptimal. Remaining autistic is an undesired, unsatisfactory, inferior, suboptimal result.
According to Dr Fein, and those enthusiastically promoting her views, we know what an optimal human being is like, and this optimal human being is not autistic. An optimal outcome is not Stephen Wiltshire or Alex Bain or Daniel Tammet or Derek Paravicini or Hugo Lamoureux or Vernon Smith or Richard Bocherds or Danny Melvin or Tony DeBlois or janet norman-bain or Jessica Park or Temple Grandin or the large proportion of autistics found recently to have exceptional skills (Howlin et al., 2009) or me for that matter.
Indeed, Dr Fein's group has proposed loss of exceptional autistic skills as evidence for optimal outcomes. And given the great support Dr Fein's views have received, we should be in little doubt as to the goals of popularly demanded autism interventions, and the consequences for those of us who for whatever reason remain unrecovered. The decision as to which kind of human being is optimal and which kind is not has been made.
References:
Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2009). Savant skills in autism: psychometric approaches and parental reports. Philosophical Transactions of the Royal Society B: Biological Sciences, 364, 1359-1367.
Turner, L., & Stone, W. (2007). Variability in outcome for children with an ASD diagnosis at age 2 Journal of Child Psychology and Psychiatry, 48 (8), 793-802 DOI: 10.1111/j.1469-7610.2007.01744.x
