Blog Post

What is the optimal outcome?

About a week and a half ago, I attended the 2015 Consortium on Autism and Sign Language, at the American Academy of Arts and Sciences. One theme of the conference was meant to be questioning our assumptions. One assumption I didn't see questioned much, though, was that of the optimal outcome for autism. The idea of unique developmental trajectories was discussed, but the idea that a different trajectory would lead somewhere different in adulthood less so. The definition of optimal outcome was essentially taken as a given.

That supposedly optimal outcome has been defined a few different ways, but the consistent thread is an equating of "less autistic" with "better" and "more human." The pioneer of Applied Behavioral Analysis, which is frequently touted as the gold standard for autism treatment, stated:

You see, you start pretty much from scratch when you work with an Autistic child. You have a person in the physical sense -- they have hair, a nose, and a mouth -- but they are not people in the psychological sense. One way to look at the lob of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person. (Lovaas, qtd. in Chance, 1974, p 76)

His standard of "optimal outcome" depended upon placement in a mainstream kindergarten class, where the teacher (who presumably didn't know anything about autism) would not immediately recognize the child as autistic, and eventually upon the student being promoted to higher grades with their age peers. This was typically given as evidence that the child was "indistinguishable from one's peers," the stated goal. 

The "optimal outcome" today is similar in nature, but more stringent -- loss of diagnosis. That is, we are considered optimal outcomes if we can consistently act in ways that convince psychologists we aren't autistic anymore. It turned out that MRIs of "optimal outcome" brains looked neither like neurotypical brains nor quite like the brains of those who remained identifiably autistic. Dr. Morton Gernsbacher noted similarities in the brain pictures between "optimal outcomes" for autism and those for "converted" lefties. 

Then there are Autistic adults writing about the cost of indistinguishability, and about trauma from being expected to perform constantly... with the "reward" for success being insistance that it is not a performance at all, and that we are no longer disabled.

So I have to ask: why do we choose this mark as our optimal outcome? What else could we use? Should we even be talking about optimal outcomes like there is one mark we should all seek to meet? We don't speak so explicitly about optimal outcomes for children without disabilities. (Though to be fair, the focus on productivity and obediance, as measured by the numbers, looks similar in intent, if not in explicitness. The best thing you can be is normal /sarcasm.)

 

Chance, P. (1974, January.) A Conversation with Ivar Lovaas. Psychology Today, 7(8), 76-80, 82-84.

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