Don’t Mourn For Us. Even as a phase.

In 1993, Jim Sinclair wrote what has become a key foundational writing of the autism movement – Don’t Mourn for Us.  It is time to move past this as a community however.

In 1993, Jim’s words were revolutionary – you may need to mourn for the imaginary child you didn’t have on the path to accepting the child you actually have. That the child you mourn for never existed.  That you need to go through that phase and move on. That you may need to mourn for the loss of your dreams and expectations, the realization that you never had what you thought you had (a neurotypical child).

That’s powerful and I won’t detract from Jim’s words here.

But it’s time to move past that. It’s time to move past the expectation that it is normal and okay to be upset when you find out your child is autistic. Even if that normal and okay upset isn’t directed at the autistic child, but directed at this mythical non-existent child you thought you had.

The gay community has went through this. 25 years ago, a child telling their parent, “I’m gay” would cause grief, denial, anger, etc. If the parent was a good parent, they would move past this phase and embrace their child. That was considered a great thing – that the child only had to watch mom and dad mourn for a bit, and that mom and dad got past it.

Today, we see story after story of a different reality – that of mom and dad saying, “That’s awesome, let’s celebrate!” There is now, in many families, joy that their child is living their life in a way that makes the child happy and complete.  Not sadness for loss of expectations or an imagined child, but joy.

Near the end of Don’t Mourn for Us, Jim says:

After you’ve started that letting go, come back and look at your autistic child again, and say to yourself: “This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it.”

I say parent’s can do this without letting go.  And where they can’t, we’ve failed as advocates to express what it means to be autistic.  Just as it took the LGB community years to get to the point where many parents no longer have to go through a -1-2morning process, it can take us years to get there.  But make no mistake – that is where we need to go.

We need to go to a world that finding out your child is autistic is no more tramatic or horrible or scary than finding out your child is gay (yes, I realize some people don’t have parents that can accept LGBT people – but that’s changing and the next generation will have an easier time, until one day no child is rejected on the basis of LGBT identity). Yes, your child may be disabled. Yes, your child may need to be raised differently than non-autistic children. Yes, your child may not be able to do some things (what child can do all things?). But I’m waiting and looking forward to the day when we don’t talk about how you need to love the child you have, this new-to-you creature, but rather that you just keep loving the child you’ve always known. Sure, you have a new label, but you knew your child before and you will still know your child.

THAT is what I want to see for the autistic community. Maybe that’s radical, but I don’t think it is. I think it is possible, even today, and should be the expectation. Sure, we should recognize the reality that some parents will have to grieve over the child they never had. But that doesn’t mean we should normalize this process or assume that everyone has to go through it. They don’t. It’s okay to not mourn. It’s okay to not mourn for any child, imaginary or real. And that should be the expectation for normalcy of parenting, with compassion (but not normalization) extended to parents that might not quite be here yet.

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One Response to Don’t Mourn For Us. Even as a phase.

  1. Xenia Grant says:

    When I read the article, I loved it! Classic back then, classic today. Maybe an updated 2014 version is due.