A Clash of Viewpoints: Disability vs. Disease

January 9, 2009 by  
Filed under Blog, Defining Autism

Educators tend to see autism as a disability. Their strategy—as with children who are deaf, blind or learning disabled—is to shore up the child’s strengths and teach strategies to mitigate weaknesses that will likely last a lifetime.

Parents, however, tend to see autism as a disease—with the potential for a cure. This clash of viewpoints leads to all manner of misunderstandings and is at the very heart of the autism wars.

Fueling the fires and confusion is the idea occurring in both the lay and professional literature that children can “recover” from autism. O. Ivar Lovaas made this claim in his seminal 1987 paper in the Journal of Consulting and Clinical Psychology, where he reported that 9 of his 19 young subjects “recovered”, after intensive early treatment with applied behavior analysis, “achieving normal educational and intellectual functioning.” Stanley Greenspan claims his Floortime method can also bring this result. And, in the pop literature, one finds numerous tales of miraculous cures, the latest from actress Jenny McCarthy.

In seems indisputable that some kids do very, very well and may even appear symptom-free, especially with early intervention: but did these kids have full-scale autism to begin with, or something milder? Unfortunately, you can’t travel back in time and run an ADOS test (currently the gold standard for diagnosing the condition). When Lovaas’ associate Tristram Smith attempted to replicate his mentor’s study in 2004, he found that the kids who did the best had PDD-NOS, as opposed to full-spectrum autism.

Language matters. The word “recovery” can distract from the hard work required to help a child with autism. Thinking instead in terms of a disability puts the focus on the here and now instead of the cure around the corner. Amanda Mazin, a Ph.D. candidate at Teachers College who also teaches a methods class on teaching kids with autism, told me this: “Things go better when parents understand the disability and make their peace with dealing with it… They reorient their homes and their lives get easier.” And, she adds, once you get down to the business of addressing the disability, you can be amazed by the progress a child will make. “You don’t know what they are capable of, which is actually very exciting.”

It’s interesting that one of Lovaas’ old associates, Ron Leaf, said much the same thing. The term “recovery”, he noted, was borrowed from the literature on alcoholism. (If that’s true, Lovaas should have said “in recovery”!) “I don’t believe in the cure model,” said Leaf. “The analogy I use is stroke victim: with good occupational therapy, speech therapy and early intervention you can get good recovery. Whether not they “recover,” they can learn an awful lot.”

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