by Sharon daVanport
Words, words, words.
Words express. Words set tone. Words reveal.
Compare two different examples in how parents of newly diagnosed children are first introduced to autism, and how these introductions serve to stage the way parents approach their child’s neurology.
“We’re sorry to tell you that your child has autism. Tragically, there is no cure. Unfortunately, your life will never be the same. Your marriage will never be the same. Expect your marriage to fail. We are sorry that your child has been stolen, but we are happy to put you in touch with organizations that will help you to become more aware of autism statistics and scientific research. In turn, these organizations will be happy to provide you with the tools for you to raise money for them so they can continue their search for the causes and cure of autism.”
“Your child is Autistic. Their neurology allows them to uniquely perceive their environment and communications. The world has yet to catch up with neurological diversities like autism, and unfortunately this creates the challenges your child will encounter. We are happy to put you in touch with organizations who can guide you toward understanding your child by hearing from Autistic people themselves. Their firsthand knowledge of what it’s like to be a person on the spectrum, as well as professional resources advocating for the importance of accepting your child’s differences, will help ensure your child’s all around success and happiness.”
Words, words, words.
Words evoke. Words lay bare. Words define.
As an Autistic woman, I find April and all the awareness hype in the autism community to be exhausting, painful and redundant. As a parent to a young adult with multiple disabilities, I challenge the destructive messages that cure-based awareness campaigns promote. These types of campaigns play upon the worst possible fears of parents. In turn, parents leap desperately towards tragedy-based medical-models of disability. And I understand this all too well, as I too was one of those parents after my child was diagnosed 15 years ago.
“It’s time for social skills. It’s time to learn how to blend in with your peers at school. It’s time…”
Those were my words, to my child, every week, for too many years.
Yet, no matter how many times I repeated those weekly words to my child, something felt awkward; something felt wrong – wrong in more ways than I have words to explain.
“I want to be a good parent, a responsible parent. I want the best for my child. And don’t the professionals know what’s best?”
Then, one day it happened. After too many words, for too many years, my child spoke up: “I’m not going to social skills anymore, mom. I hate it. I don’t want to be like everyone else.”
I froze. I smiled. Something felt right.
I still don’t know why or where the following words came from, but without hesitation, I turned to my child and asked, “What do you think about cures? Do you want to be cured?”
“Cured? No, mom. Why do people try to cure what they don’t understand? I don’t want to be cured; I want to be accepted for who I am.”
Words divulge. Words acknowledge. Words can heal.
And so began the unbridled acceptance of my child, and the acceptance of myself.