Yesterday, MSNBC and other news organizations reported on preliminary findings of a study showing that some children with autism can “recover”. The study was presented at the 8th Annual International Meeting for Autism Research. This NIH-funded ongoing study is led by Dr. Deborah Fein at the University of Connecticut, one of the most prominent researchers of autism recovery. I recommend that you read the MSNBC piece for additional details on this study.
Last November I posted a review of a peer reviewed article written by Dr. Fein’s group, which analyzed the literature that provides evidence for autism recovery. My post was divided into two parts. In the first post I discussed the concept of autism recovery and the factors that contribute or hamper recovery. In the second section I summarized their proposal for the mechanisms that can lead to autism recovery.
As I mentioned in my previous article, it’s important to note that Dr. Fain is not talking about “cure” – as this is a loaded word with very specific scientific meaning and significance. Instead, this research examines “recovery” which involves several components:
The authors first provided a specific working definition of “recovery” before embarking on an exploration of the available literature. The authors argued that to be considered “recovered” a person:
1. has a clear history of autism
2. must be learning and applying skills at a developmental level that is within the range expected in typically developing persons of the same age.
3. must not meet DSM-IV symptom criteria for ASDs
Based on their current research program, they further expanded this definition to include a more detailed set of criteria, namely, a “recovered” person:
1. must not meet ASD cutoff on social or communication domain on the ADOS
2. must not receive special education services targeted to remediate key features of autism (if any special education services are received they must target non-autism features such as attention, learning disabilities, etc)
3. must be functioning within a regular education classroom WITHOUT individualized assistance
4. IQ must be 80 or greater
5. Vineland communication and socialization scales must be within the normal range (78 or above)
A critical component of this definition of recovery is that it is not limited to DSM-IV based symptoms of autism, but it also addresses key areas of functioning. This is critical, because it prevents using the label of ‘recovered’ in cases when the effects of the treatment are limited to reducing symptoms, with little change in the functional limitations of the condition.
So why not use the word cure? After all, it seems that the definition presented above is very conservative and children who meet this definition would function just a typically developing children.
Although this is a complex issue that goes beyond a discussion of semantics, one of the problems with the word cure is that it implies the absence of the underlying mechanism that led to, maintained, or represent the condition. The issue with autism, and other similar conditions, is that we can not be certain that the underlying mechanisms are absent- mostly because we don’t fully understand such mechanisms. So in the case of a person that meets the “recovered” criteria, the person may be showing normative functioning through the use of learned (and now maybe even automatic/unconscious) compensatory mechanisms but the underlying mechanisms may still exist. A simplistic example would be a person with attention problems who learns strategies that minimize or completely eliminate the impact of such attention problems on her daily life. Is this person cured or recovered?
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