Tuesday, August 11, 2009

on Autism

Okay, I've been away for a while. I have, as my spiritual director often says, all the good excuses. In this case the good excuses are that my two-year old was just diagnosed with autism, and that I am a total Luddite and haven't been able to figure out how log into my blog (my husband logs in for me, so if I sit down at the computer, and I'm not already logged in, and he is not around to do it for me, then I can't blog. He's taught me how to do it several times, but so far it's not sticking.) Obviously the former is the more interesting of the two, so I'm going to blog briefly about that, and then I'll try to get back on track with the conversion/reflection on how I came to be where I am.
A diagnosis of autism sounds like something terrible. The general picture is of a totally withdrawn child, rocking to himself, occasionally uttering pitiable sounds, who will one day grow up into a weird, silent adult who can recite the phone book and do jigsaw puzzles with amazing alacrity. Now I'm not going to deny that this, or something like this, is part of the reality for some people with autism, but the fact is that autism (or, rather, the autism spectrum conditions) extend to cover a lot of people who are much "higher functioning" than the child in that picture. (I actually dislike the turn "high functioning," just like I dislike the term "developing world," and the term "persons of aboriginal descent" because it falls into that category of weird terms that are going out of their way to be political correct -- to such a degree that they necessarily embody a wealth of self-important condescension. However, it is, to the best of my knowledge, the only term going, and coining an even more self-important neologism so that I can be better than the self-important politically-correct faction would only compound the problem...) So, my little Ulysses is two, and he has a number of strange repetitive behaviours, and he is very ritualistic (we went to the forest to go hiking; it was his second time out -- the first time he was very upset about being there and it took him a long time to get his bearings because it was a new situation. This time, it was familiar, so it was okay. But when we got to the washrooms, and I walked past them, he got confused and he kept trying to pull me back -- he wouldn't go the rest of the way down the path. Until we had gone into the washrooms, he wouldn't go on, because the first time that we came we went into the washrooms, so that's part of the routine. After we went into the washrooms, he followed me down to the river and threw stones in, no problem.) Also, he does not talk. Occasionally, single words, like this morning he pressed my nose and said "beep," and every so often he points to his little sister and says "baby," but he's not so much one for verbalization. He's a funny little guy, but I can't really fall in step with all of the mothers who feel that they have "lost" their child when they get an autism diagnosis. I can understand why they feel that way -- what is lost is the desire to have a particular kind of child, and the dream that one's own particular son or daughter will turn out to be everything that one has hoped for. It is difficult, and I imagine that it is much more difficult for people who intend only to have one or two children (especially if the vasectomy has already been plied by the time that the diagnosis is made.) For me, well, I'm not going for one perfect little girl and one perfect little boy. I can afford to broaden the field and have one perfect little Valkyrie, and one perfect little Princess, and one perfect little Magus, and one perfect little autistic boy, and so on. (I can't give Barbara an archetype yet, because she's only two months.) It's not just that having five children means that I can spread out all my hopes and dreams for my kids across the five of them, it's that seeing how different they all are, and how unique and unrepeatable, makes me realize how silly and shallow all of my hopes and dreams were in the first place. It makes me realize that God has a character concept for each of these little people, and that His ideas are much better than mine would have been. So I'm not inclined to go about grooming them into my ideal. Better to try to figure out what God intended with this particular person, and then help that to emerge and take shape. Education and formation instead of programming.
So Ulysses is not going to be a "normal" little boy. Now I just have to go about figuring out which beautiful variation of the human theme God intends to play through this particular instrument.


  1. Just love the stuffin's out of him, and take advantage of whatever early intervention therapies are available to you. God will fill in the rest....

  2. I am a father of three daughters and I know that I love them very much. I think we parents know our kids better than "science". God certainly knows better than science and he gives us what he thinks we can handle.
    I am sure your son is a great normal child and God meant for you to love him as you do.


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