This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Thursday, July 30, 2009

My Response to "Don't Mourn for Us" by Jim Sinclair

Recently someone posted an excerpt from "Don't Mourn For Us" by Jim Sinclair on a message board that I'm on. Here is the excerpt:

"This is important, so take a moment to consider it: Autism is a way of
being. It is not possible to separate the person from the autism.  Therefore, when parents say, I wish my child did not have autism,  what they're really saying is, I wish the autistic child I have did not
exist, and I had a different (non-autistic) child instead.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us:
that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces."

Those are strong words, that my greatest wish is for my son to cease to be. While Jim Sinclair is entitled to his perspective, I am entitled to mine.

Here’s my response:

My son was a complete person as a baby, with a personality all his own. When he regressed he lost many skills and his personality was overshadowed by the outward signs of brain inflammation. Why is this state his "real" state- with ASD- when his original state as a baby was different? Why is his "way of being" with ASD the right way for him? Wasn't the way he was as a baby his "real self" if it even makes sense to talk like that at all?   He was very happy before his regression- very social, easy-going, slept well, had no food allergies, was an early talker. He's had two "ways of being" in his life, so why would the Neurodiversity proponents argue that the ASD version is the one he should keep?
I completely agree that people with ASD need to be respected for who they are right now, period. Everyone deserves to be loved by his/her parents unconditionally. None of the ASD parents I know, no matter what interventions they choose for their kids, doesn't love their child in a very immediate, fierce way. None of them wishes they had a different child. All they want is for the child they have to reach his or her potential, which is just what we want for all of our kids anyway. I am teaching my NT son to read- not because I can't love him as a non-reading child- but because reading is a skill that will serve him well in life. It's that same with my ASD son- we are working hard to help him learn to talk, not because we can't love him as a child with delayed speech- but because speech is a skill that will serve him well.

Even if autism is a "way of being", which is a vague idea, it doesn't follow logically that recovering a child from autism would make that child a stranger. There's no reason that one person couldn't have more than one "way of being" or that we are nothing more than one state of being. Imagine placing a piece of yellow transparent plastic over a photo of your child to represent a "way of being"- now imagine removing the plastic sheet. Are they completely different, or the same just not yellow anymore?

Now that my son is close to recovery his original personality, the one we were getting to know when he regressed, is back and just as beautiful as I remembered. He's not suddenly a stranger or suddenly a different person. He was the same fabulous, wonderful, incredible child every moment of his life. It's just that for much of his life he has struggled and suffered and now the barriers that have kept him from thriving are almost gone.
--> We haven't changed his personality, we have freed it from the disorder that was obscuring it. He reads better than ever, is just as creative, inventive, and brilliant as ever, he's just lost the things that made him struggle, that's all.
Helping our son is about giving him choices, self-determination, about giving him the power over his life that is his birthright. It's about giving him the ability to communicate his thoughts, feelings, ideas to the rest of us, not so that we can force him to change his interests or force our ideas on him. It's about giving him the ability to have as much of a say in the decisions that shape his life as anyone else. I don't care if he flaps hi hands and someone thinks that's "weird". We aren't trying to "make" him be normal. We're trying to let him express himself. As he loses the traits that have held him back, it is clear that his strengths are his to keep. They were never part of the ASD, they were just shaped by it. Now they are his to use as he wishes, not as a neurological injury would dictate.