Raun Kaufman: Completely Recovered or Success Story?
Posted Sep 22 2008 10:59am
I've come across some information which leads me to put Raun Kaufman on the spot. Apparently he was diagnosed at the age of 18 months. That was over 30 years ago. Isn't that rather early a diagnosis for the time? By the age of 5 he's said to have "emerged" from autism. We're in 2007 now; early diagnoses are quite common and have been studied. It turns out that it's not that unusual for children to lose age 2 diagnoses, and there's little data regarding what predicts this. Anywhere from 12% to 19% of children diagnosed at age 2 will be found to not meet ASD criteria some years later ( Turner et al., 2006; Kleinman et al., 2007 ). Sorry Raun, but those are the facts.
But maybe he didn't lose his label at 5. He simply "emerged." Still, Raun Kaufman is unusual and generates interest because he's the only adult (that I know of) who inequivocally states he's completely recovered from autism. I've encountered adults who say they might be slightly off the spectrum now, but they tend to be ambiguous about it.
How does Raun Kaufman differ from any of Kanner's "success stories" as described in Kanner et al. (1972)? It can't be that they didn't graduate from college or didn't have jobs.
Does it matter whether we call it "complete recovery" or "success story"? I think it matters a little. Losing membership in a group is different to being a successful member of the group. For example, it will probably be quite unusual if a woman becomes president of the US. But I don't think Hilary Clinton will stop being a woman if she achieves this.
Don't get me wrong. I think it is important for science to study what might have helped Raun have a successful outcome. Some clues are already there.
Although advised to institutionalize Raun, his parents, authors/teachers Samahria and Barry Neil Kaufman, instead created an innovative home-based, child-centered program in an effort to reach their son.
I'm convinced this sort of recommendation Raun's parents got is a major cause of poor adult outcomes reported in the literature. It's a self-fulfilling prophecy if you will. I'd like to see stronger warnings against early institutionalization. I believe this is more important than saying "give me money to recover your child."
I don't doubt the parallel play, joint attention, presuming competence, and acceptance (even fake acceptance) helped somewhat.
However, I don't like a lot of the discourse used by the Autism Treatment Centers of America. It's medicalized. It claims to give "hope" but instead misleads with erroneous information, such as suggesting that poor outcomes in autism are basically a given under normal circumstances.