Dear Katie, daughter of Autism Speaks co-founders Bob and Suzanne Wright,
I have two young sons who are both autistic. I’m actually autistic myself, but I’m writing to you as the fellow mom of an autistic child.
When my oldest son was little, there was a behavior he exhibited that worried me. It continued as he grew older and the thought that he would never overcome it scared me to death.
In trying to get therapists to understand both my distress and the urgency of his need for help in this area, I would comment that I was afraid he would still be doing this in college and, because of that, wouldn’t be able to live with a roommate. He was usually not in earshot or, if he was, seemed not to be paying attention to the conversation. It never occurred to me that he heard, let alone understood, what I was saying. It was before I censored my words in his presence.
Not that I lie to him or keep things from him, just that I try not to burden him with my own fears. Shielding him from my fears is part of my job as a parent. I’m the grown up; I need to deal with my own issues. I believe it’s good for him to see that I struggle with some of the same things he struggles with, but I can do that without burdening him with problems outside his realm.
Not long ago, I heard him repeat my exact words to a therapist; relating them as a fear of his own. He said he was afraid he wouldn’t be able to go to college and have a roommate because he would never be able to overcome this obstacle. This time he was the one who didn’t realize I was listening. It had been well over a year since I had spoken them myself, but the words still hung around him like a noose. My words coming from his mouth ripped my heart in two. They had affected him in a way I never intended. Or anticipated. They had increased his anxiety and chipped away at his self-esteem, essentially making it more difficult to overcome his challenge when it’s my job to make it easier. I would never hurt him, yet here was proof that I had done just that.
There was a beautiful post over at A Diary of a Mom this week called A Love Letter. It’s about the damage done to an autistic person when he, in this case, is subjected to poor treatment by members of his extended family. Treatment in the form of words suggesting that he is less than valuable as a person. The post includes a moving letter by Morénike to the child. I was particularly struck by the editorial note from Jess at the end: “The overwhelming consensus from my adult Autistic friends was this: It is a parent’s responsibility to protect our children from people like this until (if ever) they’re ready to accept them. There is far, far more damage done to a child’s psyche from those who refuse to understand than could ever be caused by a lack of contact with the same.”
I’d like to add that good intentions of the person making the comments don’t lessen the pain for the autistic person. Even if Uncle Joe is trying to help or understand, it’s the parent’s responsibility to step in and stop it, not to defend Uncle Joe’s intentions. That’s a hard lesson to learn, even for parents who are autistic themselves.
It was hard for me to learn and I will forever regret that I learned it at the expense of my child.
Autism Speaks hurts autistic people with its rhetoric that frames them as less than human. Much of that rhetoric comes to the public through the voice of your mother, your son’s grandmother, Suzanne Wright.
When Grandma Suzanne steps up to the microphone and claims that autistic people are essentially missing from their own minds and bodies, it hurts autistic people.
When Grandma Suzanne tells the world that the existence of autistic people prevents their families from living, it hurts autistic people.
When Grandma Suzanne tells us that autistic children are breaking their parents, it hurts autistic people.
Those autistic people she’s hurting include her grandson; your son. She is saying that your son’s existence keeps you from living your life. Even if you are not telling him directly that he has broken you, his grandmother is saying exactly that.
You may choose not to see it, but your parents are hurting your son. If you choose to stand with them, you’re hurting him, too. I promise he hears you and he will remember, whether he speaks it or not.
Very powerful and true.
In my admittedly limited experience as a regular-ed classroom teacher who has worked with a few students on the spectrum, I have found without exception that those who exhibited autistic tendencies also invariably suffered from being more sensitive to others, more empathetic and thus more hurt when they thought others were hurting. Consequently, I learned to guard my words and never allow another student to use blaming language with reference to an autistic student. Children at my grade level are often quick to say, “Someone stole my crayons!” or “It was her fault!” when the logic of the situation clearly shows that someone bumped the desk and a crayon fell off of it. But blaming language of that sort has generated a powerful response of sadness and shame and regret when targeting an autistic child. I’ve learned to be more careful. We must all learn to be more careful.
Where is the like/love/Oh hell, I’ve done that too/I need a hug button?!? Thank you for adding your honest, eloquent, and moving voice to the cause. I continue to be shocked by how much the Autism Speaks sound bytes have invaded my perception of my own child and our friends.