Whose Planet Is It Anyway?

Wednesday, August 09, 2006

Don't Mourn, Get Attitude

I barbecue sacred cows quite often in this blog, but before I start deconstructing the widely admired essay Don't Mourn for Us, I want to make it clear that I do not intend any disrespect toward the author, Jim Sinclair. That essay was written at a time when many people considered it a radical statement just to suggest that an autistic child might understand and be upset if his parents were mourning his existence. Since then, it has become mainstream advice to tell parents that they should mourn for the non-autistic child they expected to have, work through their grief, and then move on to the task of caring for the child they actually have.

But that's wrong.

A grief response to the death of a family member may be hard-wired in the human brain (although there is obviously a great deal of cultural and neurological variability in how such feelings are expressed). When parents respond to a child's autism diagnosis with grief, however, this is not a natural and innate response, but a culturally scripted activity.

A child who has just been diagnosed as autistic is the same cute little toddler that he was a few hours ago. Before his parents heard the word "autism," they weren't wishing that they had a different child. They didn't have a mental picture of some other imaginary child they would have preferred. So just what are they being advised to mourn?

We don't have to look very far to find that answer—it's all over the propaganda of hate groups such as Autism Speaks. Parents are told that autism is a devastating disability, that their child is a tragic sufferer who will never have friends or play sports or get married or have a job, and that their child will be a burden to them and to society for the rest of his life.

In other words, the grief that many parents experience has nothing to do with the difference between their child and some imaginary, more perfect child. What they are actually mourning is the difference between a truckload of ugly autism stereotypes and their child as he really is—a worthwhile, lovable young person who will grow, and learn, and quite possibly have friends, play sports, marry, and/or work. No one can accurately predict what a small child, whether autistic or not, will grow up to do.

This is my advice for parents: Don't mourn, period. Instead, get some attitude. Fight back against the stereotypes and the prejudice. When someone proclaims that they want to wipe out autism, they are envisioning a world that has been eugenically cleansed of a significant percentage of your own genes. Don't let them lure you into the self-hatred trap. Fight back. It's up to you to make this world a decent place for your child to grow up in.

I recently read a wonderful post by MOM-NOS, who described taking her son for an early childhood assessment when he was still nonverbal. She told the assessment team what a happy and affectionate child he was. When she was asked what she would like to change about her son, she couldn't think of much to say, except that it would be good if he could talk. Then her husband gave this response:

"See, the thing is," he said, "We just think Bud is perfect. You know, even if he's behind, he's perfect. He's the perfect Bud. And that's all we really want him to be."

That's awesome attitude.



  • I could not agree more with your post today. When our son was diagnosed we told the Dr, thank you, and we were grateful because we could now get services he needs. She was shocked at our response, said she had never had parents respond like that. We told her he was our son, we love him who he is right now, and we like some of his oddities! We embrace it, it's hard for us to try to change him to conform to the world, because I feel sometimes that is all that the therapy does. My son is perfect, not broken, or damaged, he is ours and we try to change to understand him.

    By Anonymous Meg, at 3:31 PM  

  • I'm sure many autistics can relate to disbelieving in sacred cows, questioning authority, demistifying taboos, and rethinking "common sense". I'm sure Jim Sinclair wouldn't mind.

    I agree that much of the mourning due to an autism diagnosis is cultural and enhanced by negative propaganda. But there is probably some mourning that is due simply to difference. I know of kids who were likely autistic, but not diagnosed, and the parents did worry the kid might be mute. They were not ready to kill themselves or any of that, though. Different times too.

    By Blogger Joseph, at 3:51 PM  

  • Yes, yes, yes! Absolutely! We knew Patrick was autistic in December and only went for the official diagnosis so he could get services if we wanted them. As a matter of fact he was diagnosed at such an old age (4) because we liked him just the way he was. A label doesn't change that.

    When they gave us the "results" they treated us with kid gloves and acted as though they were ruining our lives.

    My first thoughts after coming out of that room was "he's still our Patrick" and "I feel so bad for all the parents who come out of the hospital knowing their child might die".

    By Blogger mumkeepingsane, at 4:21 PM  

  • That's always been my problem with "Don't Mourn For Us" -- it assumes that mourning is a natural, understandable, and defensible reaction to having an autistic child, and that it had to be done one way or another. Sort of like people assume there has to be a mourning period when you become disabled. And it encourages never getting past the culture of today where these things are considered normal responses.

    This may have been as extreme a view as could have been gotten across at the time when it was written, but that's still something that's always bugged me about that essay.

    By Blogger ballastexistenz, at 7:12 PM  

  • Thank you!!! My hope is that my AS daughter grows to be a strong and confident person. Your views are refreshing and empowering.

    By Anonymous Anonymous, at 12:15 AM  

  • Jim Sinclair's essay is a necessasry brick in the face to people who can't tell where they, as parents, end and their children begin.

    Autism Speaks doesn't speak for all of us and we owe it to keep our voices heard.

    This was a great blog. I'm passing it on!

    By Anonymous Jennifer, at 4:26 PM  

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