As I painstakingly read through the dark history of autism in Steve Silberman’s book, “NeuroTribes” (love the book, hate the history), my heart aches for all the children who came before my son, Ryan. Children were subjected to atrocities by the Nazis, treated by “experts” or abandoned by their parents. Back then, parents had no understanding of the concept of “different, not less.”
And even though it was the children and adults living with autism who suffered, I believe the mothers who came before me suffered, too. Those mothers didn’t have Google, support groups or even a voice like mothers do today.
There were moments while reading the book where I felt enraged, sickened, devastated and at a loss for words. I wanted to grab the mothers who came before me by the shoulders and shake them. I wanted to shout, “Stand up for you child! Protect him! Make the experts hear you and see him.” But, of course, I can’t. Many of those mothers are long gone, as are their children.
If those mothers were able to hear my voice today, it would be a voice filled with sympathy and forgiveness. Of compassion and understanding. Of love and not judgment. Because I believe if the mothers who came before me had listened to the voice inside their heads and not the experts, the lives of their children would have looked very different.
So to the mothers who came before me, I want to say this:
I am sorry.
I am sorry your child was born in a time when differences of any kind were viewed as something wrong that needed to be fixed, hidden away or, worse, eliminated.
I am sorry that “fixing” your child often required you to go against your innate instinct to protect and love your child. That “experts” told you they knew what was “best” for your child and you did not.
I am sorry those “experts” often believed that locking your child away in an institution and performing awful treatments on them was considered “best” for him or her.
I am sorry your mother’s instinct was dismissed and you weren’t taken seriously by those holding your child’s future in their hands.
I am sorry you were often disregarded when it came to choices about your child, the child you loved, nurtured and protected since the moment you knew they were a part of you.
I am sorry you not only carried the weight of guilt but often the blame as well.
I am sorry you saw progress, joy, strength and love, but no one believed you. Rather than seeing less, you saw more, but your voice and your instinct was silenced.
I am sorry that once “treatment” began, you saw your child regress and were told, “That is to be expected,” and you felt powerless to intervene.
I am sorry you didn’t have access to the information mothers who came after you do.
I am sorry you lived every day wondering if you made the right choice, and the guilt of not knowing, of doubting, ate at your soul.
I am sorry your child failed to understand your decision was based on what you were told “was best” by everyone, everyone except the voice deep inside your heart.
I am sorry children and adults who were different like your child weren’t heard or seen beyond their differences.
I am sorry my apologies, my sympathy and my voice have come decades too late for you and your child.
I am sorry.
For the mothers with me now and for those who come after me, we must continue to advocate, educate and be heard, especially for the mothers who came before us. We are the voices of the past, the present and the future, so make yourselves heard.
Follow this journey on The AWEnesty of Autism.