What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

 
 

My Letter to the Editor

I read with great interest an article in the local paper about a trial screening for autism, which was administered to local one-year-olds. According to the article, of the children identified as potentially having a developmental problem, 75% were indeed so diagnosed by age three.

The first question that came to my mind concerned whether it is known if problems were later found in any of the kids who checked out as being OK in the screenings. However, the percentage raising flags seems roughly consistent with other statistics, so this sounds like a very worthwhile thing to be doing.

My next question is based on the fact that I have a 26-year-old son who had major developmental issues from the very beginning. When he was one year old, his mother and I wanted testing to establish whether he was at risk of being autistic. The doctors were unanimous in telling us that it was far too early to worry about that sort of thing. They were so unhelpful that we became alienated and sought medical care from alternative providers. A memoir I wrote about what we could and could not accomplish via that route is being published this year. At any rate, why is it that pediatricians have needed a quarter-century to get around to checking one-year-olds for warning signs, and only on the trial basis described in this article?

I’m very glad they’re doing it. But it doesn’t say much for progress that the idea is still novel enough to be written up in the Journal of Pediatrics.

UPDATE, June 14, 2011

Apparently, before lamenting the fact that it has taken this long even to do a pilot study of screening babies for developmental issues, I should take into account voices that still say screening is a bad idea.

I have a very hard time understanding how supposed experts can take such a stand. The above article in Reuters does not offer justifiable rationale. Yes, many screening tests can give erroneous results. They nevertheless have merit when the information is used intelligently. And the existence of wait lists for treatment hardly justifies further delays in getting on such lists. Just the opposite! If there must be a wait list, get on it now. If you find that you don’t need it, you can always get off.

When asked to list the various pitfalls families should try to avoid in seeking help for their kids, I sometimes mention the irresponsible things lay people post on the Internet. I must remember to mention as well the nutty contributions of professionals.