When Should I Be Concerned?

Those who have sent comments to the Interagency Autism Coordinating Committee (IACC) on its draft strategic plan will recognize the title of this post as the heading of the first section of the draft plan. (If you have not yet written a comment, they're due today. Follow this link to find a quick submission form with suggested talking points for last-minute responses.)

In the draft plan, the question "When should I be concerned?" refers to the identification of autism spectrum conditions. Although the main issue seems to be early childhood screening and when a child should be evaluated, there is also some discussion of identifying autism in older children and diverse populations.

Given the lack of clear definitions and the subjectivity of the current diagnostic criteria, this is indeed an area where more research would be useful. However, I believe that the IACC has not gone nearly far enough in questioning how our society identifies autistic people and that we need to reframe the issue from a much broader perspective.

What is actually being asked here, when we strip away all of the medical terminology, is a sociological question: At what point does our culture determine that a child (or adult) is not part of the dominant "normal" caste and should instead be classified as belonging to a subgroup (to which the autism label has been applied in recent years) of the stigmatized "abnormal" minority?

I'm reminded of the debates that took place in South Africa shortly before the apartheid system collapsed. At that time, the South African population was divided by law into whites, blacks, Asians, and people of mixed race. There was quite a lot of discussion about how to determine who belonged to what category, in the small percentage of cases where it wasn't immediately clear. As with autism in today's world, the resulting classifications affected what schools a child might attend, what sort of education (or lack thereof) he would get, and what his career prospects were likely to be.

Given the profound negative consequences of being identified as autistic (or any other neurological minority) in a society that sacrifices more of its children every year on the altar of normality, it is no wonder that so many parents are "concerned" when they notice that their children may have autistic traits. From that point of view, the IACC's question reasonably reflects the actual experience of many parents. It is also not surprising to find such a strong focus on teaching children how to pass as non-autistic, through behavioral programs or other means.

While it is only to be expected under the circumstances, this is not where our concern should be placed. Rather, we should have been concerned, a long time ago, about the social fiction of the "normal" brain and how it affects a human population that is—and always has been—extremely diverse in its cognitive and behavioral patterns. At a time when an increasingly complex economy needs large numbers of workers with highly specialized minds and abilities, our society perversely insists that there can be only one acceptable type of brain, thus forcing millions of people to hide their differences or suffer a lifetime of exclusion. It's past time to end our own apartheid system.


Edit: Here's a link to a powerful video about segregation of autistic students in American public schools.