Sunday, January 31, 2010

Recovery from autism 40% - two sources agree?

If you asked an expert today whether it is possible to recover from autism all you are going to get is a big fat question mark. To date we have not been able to accurately determine exactly how many children and adults have autism let alone how many might have once had autism and recovered from it.

But maybe recovery from autism is more common that we thought.

If you remember, there was a big deal made out of what last summer's National Survey of Children's Health (NSCH) had to say about autism. According to that survey, autism was much more common that previously believed AND there were a significant number of children who once had a label of autism but no longer did.

The NSCH data was formalized in a paper in Pediatrics that said "nearly 40% of those ever diagnosed with ASD did not currently have the condition".

Results from a survey can be misleading and the report in Pediatrics didn't draw any conclusions from the figure. There was widespread talk on autism sites of what this figure meant with some people claiming that it showed recovery from autism while others were using it to show how flaky diagnosis could be. I didn't really know what to make of it at the time.

But then a funny thing happened when I was looking at the data in the study I wrote about yesterday. This was a prevalence study done in the UK on a group of children that were born in 1990 and 1991 whose main point was that autism was much more common than previously thought. As part of this study the researchers examined 112 children that had a diagnosis of autism and yet, after looking at their medical records and test results (ADOS, ADI-R, and others), 44 of the children had their label removed (this result was not stated directly but if you look at the data in the study you can arrive at the figure).

In other words, 40% of the children in this second study had a confirmed medical diagnosis of autism but, years later, when the children were evaluated again, they no longer had a diagnosis.

This study, published the year before the NSCH results, shows the same "recovery" rate (40%) and at the same time avoids the problems with the NSCH data. The existing diagnosis for these children was confirmed and a new evaluation of the children was done by qualified professionals - this wasn't just a parent saying it was so like the NSCH survey.

The same result appearing in two different sets of children from two different countries using two different methods of discernment makes me wonder.  This result is also similar to the "recover rate" that has been demonstrated by ABA.

I am starting to think that this figure is real and means something - I just don't know what.

It is completely possible that all this means is that a diagnosis of autism isn't reliable, that a huge number of children are given the label "just in case", or that the children receive the label just to access services (which don't exist in many areas). Or it could just mean that I am misinterpreting the data from the second study.

Or, just maybe, this result shows that it is possible for a child to recover from autism.

Just food for thought.

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