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Optimal Outcomes for Autism

Posted Jan 24 2013 12:41am

A recent study discussed people who were given autism diagnoses but later did not qualify for the diagnosis.  The study is Optimal outcome in individuals with a history of autism (full text online) and Emily Willingham has a discussion of it as Can People Really Grow Out of Autism? Since she’s discussed the study, I’ll focus on “optimal outcome”. At least my take on it.

The authors of the study refer to Optimal Outcome as

we require that the individual be without any significant autism symptoms and function within the normal intellectual range; however, other difficulties, such as weaknesses in executive functioning or vulnerability to anxiety and depression may still exist.

Other authors have considered individuals who “lose” autism diagnoses but remain intellectually disabled.

There is an additional group of children who lose the diagnosis, but still have significant intellectual or language disability (see for example Turner & Stone, 2007, and Sutera et al., 2007) and this is certainly another kind of good outcome for these children.

I have a different definition of “optimal outcome”. Happiness. Most parents want to see their kids happy. I don’t know why I should change my definition just because I have an autistic kid. And, yes, one can be autistic and happy. And, no, being non autistic is not the same thing as being happy.

It’s not a good definition for research. My guess is that there are reasonable “happiness” measures researchers can use, but it will likely be more difficult to reliably quantify than “not autistic”. But for this discussion I’m not a researcher.

I’ll take happy and autistic over non-autistic and unhappy as an optimal outcome for my kid any day.

Which is a good place to segue into the cure debate. I don’t spend a lot of time on the cure discussion. Partly this is because like optimal outcome, different people have different definitions of “cure”. Is a cessation of self injurious behaviors a cure of autism? Is the ability to mask one’s autism behaviors for long periods of time a “cure”? Is a complete change in the way in which one thinks a cure? The answer is yes–each of these is a definition some people chose. And there are more.

Where the cure discussion goes really wrong, in my opinion, is when people assert that “not autistic” is better than “autistic”. Often to the point of basically trashing autistics in the process by using terms like “train wrecks”, “tsunamis”, “burdens” or worse (yes, it gets worse). A lot of harmful language is used in promoting the idea of a cure.

When told that I am against an autism cure (strangely, I am rarely asked my opinion, I am told it) I sometimes respond, “which cure is that, exactly?” Makes people pause. If the conversation continues, I ask, “tell me the exact steps I need to take which you can guarantee will cure my child of autism”. The cure debate is a hypothetical topic. One which I wish more people would really engage in, but hypothetical. I wish people would engage in it to get to the point of at least accepting as valid the idea of “let’s make a world where if a person is offered a cure, she will be equally accepted either way, and will be offered the support she needs either way.” I guess that’s my idea for an “optimal outcome” for society.

By Matt Carey

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