Grief and the automatic messenger

It’s a regular part of my life to work with families who have just learned that their child has autism. Sometimes they are given this diagnosis gently, sometimes not.

Used to be an uncommon diagnosis. Not any more. Used to be people didn’t know anyone with autism. Not any more.

When I was 19 or so, I was floundering around making uninformed decisions, trying to figure out how to live my life without a plan. I worked for awhile with a family as an au pair (completely untrained). They had four children and another on the way. I have no idea how I got that job.

Their 10-year-old had autism. He said “lugadabugadoo lugadabugadoo” repeatedly. He rocked on his heels. He knew the names of every radio staion in the Los Angeles area. He liked to run water over his hands in the bathroom while reciting the names of the radio stations.

He and I were pretty good friends. He followed me everywhere; I taught him how to jump rope. Not very well, but still, I felt that we had made a happy and mutual connection.

That was a long time ago, and since then his family will have made decisions about his life as an adult. He was not a kid who was likely to grow up and live independently, but he was fortunate to have a family with the resources and the emotional stability to work hard on his behalf.

Used to be, people didn’t have a picture of what autism can look like. Now they do. They’ve seen the specials on TV, they’ve looked at the websites. They’ve got neighbors and cousins. And the possibility that their child with autism might be rocking, head banging and utterly dependent on them for life is understandably frightening. And is one possibility.

When I had cancer as a kid, my parents were told that I would probably die, and that was probably for the best, because if I lived I would be brain damaged from radiation and hideously disfigured. Which made me, for some time, the official family tragedy.

So unnecessary, so wrong. But while experts don’t want to hand out false hope to young famlies, we can unintentionally be damned generous in handing out despair.

When I hear from my families that their kid just got a life sentence of autism, I know the news was delivered by the fact doctor and not from the heart. Makes me want to smack my colleagues in the head, remind them not to be automatic, not to crank out that diagnosis like we’re working in a fast-food line.

I will probably not use this blog to talk much about my profession. But there is this overlap for me and my personal history, as I try to guide these moms and dads back to their own child, the one whose future has not been nailed down by a stranger with a simple, reductionary label.

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5 Responses to “Grief and the automatic messenger”

  1. So what’s the best thing to do, mention the diagnosis as a possibility and then talk about the range of possible futures a little, giving examples, so people get a sense of what might be out there?

  2. bosquechica Says:

    It’s a tricky one — yes, and that’s exactly what I try to do. I’ve been around autism long enough to have stories that show that a child can have autism and still have a happy future, which is what they want to know. Sometimes I wish I was still in diagnostics, where I could buffer the parents from the sledgehammer style so commonly used here (there is only one diagnostic center in the entire state). But in some ways being out in clinical practice I am better able to talk them through those first reactions . . . Time is a valuable asset, the diagnostic teams really don’t have that luxury. Damn, might have to cut them some slack.

  3. Trees, I think it’s great that you have separated your fiction (on Cuentos) and your personal thoughts (Can’t See The Forest For). However I am thinking you need a third blog for your professional endeavors? Or do you have that up and I just need to find it? Something incorporating “TalkAbout”?

  4. I’ve got one. It has lain fallow for months. My goal for that site is to provide information and resources for my patients, clients and families. I would need to keep my personal feelings out of that, though. So I guess it’s either here or start another blog. And another.

    Scuse me, I believe I’d better go for more caffeine.

  5. Hi bosquechica. I, too, am glad to see that you separated the two blogs, plus I love that you are posting regularly. I’m so thrilled to realize I have three or four posts to read and comment on!

    I often have a hard time writing about work. There’s the matter of confidentiality, and sometimes it feels like a rant. Or maybe I don’t want to think about work when I’m not at work. But what I wanted to say was, I hope you can write about work on this blog. It’s a part of who you are. Just like geese are a part of who you are. Of course, if you want the blog to be aimed toward your patients and their families, then it makes sense to start another blog.

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