October 21, 2009

The A-Word

This is the second time someone has said in Jeff's presence, "My son is autistic, too." Although I am the last one to get sniffy about "labeling"--I will do anything to get social services for the boys--this comment is so jarring. My attitude has always been, "I know my kids, so it doesn't really matter what words are used to described them." I confess that I have used the A-word myself on occasion, but usually as shorthand, in the case of frustration or immediacy. On two occasions long ago, adults (once at a playground, once in a bookstore) have tried to grab Jeff and, knowing that this was not going to have the result they intended, I yelled, "Don't touch him. He is autistic."

However, that term is not anywhere in the boys' medical or educational records. It's just as well; it would be much too simplistic. There is no doubt that they are somewhere on the continuum of autistic spectrum disorders, but it's a small piece of a constellation of issues.

As Jeff has gotten older, many of his "autistic" behaviors have diminished. He is somewhat immature for his age and socially clumsy, but that word suggests many traits which Jeff doesn't have. I have overheard Jeff and his respite worker chatting, teasing and joking, like young men anywhere, and I think, "Who is that regular person?" Eye contact is not an issue. Explosive tantrums--nope. Sensivity to noise and texture--not really. It's still hard for Jeff to follow adult conversation, but with a prompt or two, he can participate, and more significantly, he wants to. Autism suggests a lifetime of social isolation--the confusion and bewildering morass of nuanced human behaviors--but Jeff is eager to interact and make friends.

So I'm going back to my own diagnostic description which I employed for many years while waiting for the doctors to come up with something better: autism-lite.

1 comment:

JFS in IL said...

It is a useful label, though, when out in public. I find it easier to get Joe some slack from folks who otherwise might get angry with him if I can mutter the "A" word - it is far easier than explaining what LKSV and PDD mean.

More often than not - folks respond that they either have a relative on the spectrum or have a neighbor with a kid on the spectrum. Like homeschooling, it is being more , well, not mainstream, but common. :-)