Thursday, May 14, 2009

Au Revior, Autism: Can Autism Be Cured?

A cure for autism? Should I have paid more attention to Jenny McCarthy when she told Oprah she'd cured her son's autism?

Can we really cure this often profound disorder?

University of Connecticut psychology professor Deborah Fein believes it. She presented a study at an autism conference showing 20 children recovered from autism - most who'd undergone many hours of rigorous therapy, some 30 -40 hours a week since age 5. The kids, aged 9 to 18, no longer displayed the typical autistic tendencies. She figured 10% of autistic children could overcome it. She does admit that some of the kids are still quirky and socially odd if not verifiably autistic. BTW, the study has not been published in a peer-reviewed journal.


The rub? All the kids were diagnosed earlier with the mildest form of autism, had high-IQs and were in the normal range of physical behavior (e.g., walking, holding pencil). Not the classical, pre-autistic spectrum autism. And they received lots of therapy. The 'cured' sample included a mere 20 children. And I don't know if there were any statistical tests involved nor did I read about any control groups. Meaning, how many (similar, high-functioning) kids didn't improve? Given the prevalence of autism I would expect a larger sample of children with mild autism. If it wasn't a large sample (comprised of many who did not recover) - than I'd be suspicious of the reliability of the small sample. If there was a large sample, than obviously only a small percentage recovered.

The question comes up. Were these children "autistic" in the first place? Fein verified their earlier diagnoses through medical records - which makes me wonder if they all received a proper diagnosis. But let's assume they did.

It's true, we've changed our notion of autism over the decades. The DSM, the bible of mental health practitioners (and insurance companies) has expanded the autistic spectrum, adding new symptoms and disorders (e.g., Asperger's Syndrome and Pervasive Developmental Disorder). So it seems likely these high-functioning kids probably would not have been labelled some 15 to 20 years ago.

So, given that the children in the study improved other experts have asked if the kids should have been labelled in the first place.

Would the kids have overcome the developmental lags? It's not clear from this study. Perhaps another would address this issue. But I assume it would be difficult to find a bunch of kids who are labelled but not receiving therapy. And of course, it sounds unethical. But that would be the perfect experiment. To compare groups of similar kids (in terms of autistic symptoms), one group that received intense therapy, and one that didn't.

A "cure" brings up another issue.

What distinguishes an assortment of developmental delays from a true disorder? Is there a difference? Does it matter? If therapy improves lives, than should we care if we're treating a full-blown disorder or merely a group of symptoms? If no one else, the insurance companies certainly do care - they only pay for DSM diagnoses.

What about the children who can never recover? Is it a disservice to them to classify the "temporarily" autistic on the autistic spectrum?

Read the comment on Parentdish from a mother whose son was "cured"- she suggests all this talk about a cure gives "false hope" to families dealing with severe autism.

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