Outcomes

I wasn't surprised when the NYU Child Study Center's online forum on Tuesday turned out to be a heavily moderated propaganda fest that blocked almost all comments from self-advocates and made only the slightest pretense of responding to the concerns of the thousands of people who objected to the Ransom Notes advertisements. Still, there was one exchange that provided some useful insight into the mindset underlying the ads:


Kristina Chew, Ph.D.: It would be good, perhaps, to teach children about conditions like bulimia, depression, autism, in ways that state simply what they are, without overly emphasizing that it is "terrible" to have them. That's not to say that a person with (for instance) depression does not suffer or have difficulties. It's important to emphasize hope and help, rather than fear.

Dr. Harold S. Koplewicz: I agree with you. However, if we don't educate the public about outcomes of untreated psychiatric disorders, they tend to minimize the disorders; "she is just sad, snap out of it, he is a quirky kid, why give him accommodations, she is just a dizzy blonde, not a child with ADD."


This statement by Koplewicz is very similar to the excuse trotted out by Autism Speaks in trying to justify its admitted manipulation of the images shown in the Autism Every Day film to get the maximum negative effect. According to this argument, it's vital to raise awareness by drawing attention to bad outcomes so that parents will be motivated to get prompt treatment for young children and avoid these bad outcomes. People shouldn't be so thin-skinned, they declare, as to complain about a little collateral damage in this noble war to save children from preventable suffering.

Quite apart from the profound moral deficit shown by those who see nothing wrong with intentionally creating stigma and stereotypes to promote an agenda, they don't even have any factual data to support their claim that they are preventing bad outcomes. Where are the long-term studies following large numbers of children as they grow into adulthood and identifying specific factors that contribute to various outcomes? Nonexistent, that's where. In the case of Asperger syndrome, a diagnostic category that came into use less than 15 years ago, there hasn't been enough time to do a meaningful long-term study of outcomes even if someone had bothered to try. Which they haven't.

No professional can truthfully say that a particular medication, therapy, or what-have-you will prevent a negative long-term outcome. The most they can honestly claim is that some people in similar situations have felt that the medication, etc., was helpful. (And we don't even have a culturally unbiased consensus definition of what a successful outcome might be—that's a whole 'nother can of worms.)

There are a few things we do know, though, with regard to outcomes. We know that widespread negative images can damage a child's self-concept. We know that there is such a thing as a self-fulfilling prophecy. We know that when children are placed in segregated school environments and not expected to learn, it's quite likely they won't learn. We know that separate but equal is inherently unequal. We know that when employers think of certain groups of people as a detriment to society, there will inevitably be serious problems with employment discrimination. And we know that human rights must be vigilantly guarded, even in the twenty-first century, as they can all too easily disappear.