As I painstakingly read through the horrible history of autism in Steve Silberman's new book, Neurotribes (love the book, hate the history), my heart aches for all the children who came before my Ryan. Children who were subjected to atrocities by the Nazis, "treatments" by the "experts" and abandonment by parents. Parents who had no understanding of the concept, "different, not less".
And even though it was the children and adults living with autism who suffered so horribly, I believe the mothers who came before me suffered too. The mothers who did not have Google, support groups, understanding, or even a voice like we mothers have today.
Neurotribes sheds light onto the dark history of autism. There have been moments while reading this book where I have felt enraged, sickened, devastated and at a loss for words. I want nothing more than to grab these mothers who came before me by the shoulders and shake them. I want 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. I am as helpless for their children today, as they were back then. Voices silenced by time and timing.
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 judgement. Because I believe that if the mothers who came before me had listened to the voice inside their head and not the voice of experts, the lives of their children would have looked very different.
It would be easy to cast blame, to say to these mothers who came before me, "Why did you listen to the experts and not your heart?", but, we all know that times were different then. Today, I would never consent to some aniquated medical treatment such as a little "bloodletting" for the flu, but, if 100 years ago, an expert would have assured me that bloodletting would make the body aches and fever of the flu subside, I probably would have asked, "Which arm?". It's easy to look back in time and think, "those people were crazy!", but, "those people" were living in an era when bloodletting was a medically acceptable form of treatment for sickness and disease as was routine institutionalization, shock therapy and "putting him to sleep" for children who were "different".
So, to the mothers who came before me, the mothers who had no voice, I want to say this:
I am sorry.
I am sorry that your child was born in a time when differences of any kind were viewed as something wrong, something diseased, something 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 that those "experts" often believed that locking your child away in an institution and performing awful treatments that no child, regardless of differences, should have ever endured was considered "best" for him or her. Treatments that ranged from abandonment, starving, shocking, experimental medication and tragically, sometimes even death.
I am sorry that as a woman and a mother, your gut, your intinct was dismissed and you were not taken seriously by those holding your child's future in their hands. I am sorry that 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 that not only did you carry the weight of guilt, but, often of blame as well.
I am sorry that deep inside you knew that although your child was different, you saw progress, you saw joy, you saw strengths, you saw love, yet 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 that you did not have access to the information mothers who came after you do.
I am sorry that you lived every day wondering if you made the right choice, the right decision and that the guilt of not knowing, of doubting, ate at your soul.
I am sorry that your child failed to understand that your decision was based on what you were told "was best" by everyone, everyone except the voice deep inside your heart.
I am sorry that children and adults who were different like your child were not heard or seen beyond their differences.
I am sorry that my apologies, my sympathy, my voice has come decades too late...for you and your child.
I am sorry that your child, and you, suffered so my child could thrive.
I am sorry.
For the mothers who are with me and who come after me. We must continue to advocate, educate, and be heard for the mothers who are beside us today, for the mothers who will come after us, and especially for the mothers who came before us. We are the voices of the past, the present and the future so make yourselves heard.
As for you Steve Silberman, at first I wanted to hit you with your big, wordy book, because the truth, the history, the "legacy" of autism was just too damn hard to read. However, as I near the end of the book, I realize that we have to learn from the ugly history to make way for a beautiful future, and that many legacies are born out of heartbreak, devastation, and loss. That learning from the past is the only way to move forward to a future where the mistakes of the experts and the mothers before us are not committed again. So, even though your words hurt Mr. Silberman, I am grateful for every single one of them. If I ever run into you, no need to duck, I promise I won't throw your book at you, I am, however a hugger, a hugger with a big, loud, shouty voice. You have been warned.
And even though it was the children and adults living with autism who suffered so horribly, I believe the mothers who came before me suffered too. The mothers who did not have Google, support groups, understanding, or even a voice like we mothers have today.
Neurotribes sheds light onto the dark history of autism. There have been moments while reading this book where I have felt enraged, sickened, devastated and at a loss for words. I want nothing more than to grab these mothers who came before me by the shoulders and shake them. I want 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. I am as helpless for their children today, as they were back then. Voices silenced by time and timing.
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 judgement. Because I believe that if the mothers who came before me had listened to the voice inside their head and not the voice of experts, the lives of their children would have looked very different.
It would be easy to cast blame, to say to these mothers who came before me, "Why did you listen to the experts and not your heart?", but, we all know that times were different then. Today, I would never consent to some aniquated medical treatment such as a little "bloodletting" for the flu, but, if 100 years ago, an expert would have assured me that bloodletting would make the body aches and fever of the flu subside, I probably would have asked, "Which arm?". It's easy to look back in time and think, "those people were crazy!", but, "those people" were living in an era when bloodletting was a medically acceptable form of treatment for sickness and disease as was routine institutionalization, shock therapy and "putting him to sleep" for children who were "different".
So, to the mothers who came before me, the mothers who had no voice, I want to say this:
I am sorry.
I am sorry that your child was born in a time when differences of any kind were viewed as something wrong, something diseased, something 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 that those "experts" often believed that locking your child away in an institution and performing awful treatments that no child, regardless of differences, should have ever endured was considered "best" for him or her. Treatments that ranged from abandonment, starving, shocking, experimental medication and tragically, sometimes even death.
I am sorry that as a woman and a mother, your gut, your intinct was dismissed and you were not taken seriously by those holding your child's future in their hands. I am sorry that 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 that not only did you carry the weight of guilt, but, often of blame as well.
I am sorry that deep inside you knew that although your child was different, you saw progress, you saw joy, you saw strengths, you saw love, yet 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 that you did not have access to the information mothers who came after you do.
I am sorry that you lived every day wondering if you made the right choice, the right decision and that the guilt of not knowing, of doubting, ate at your soul.
I am sorry that your child failed to understand that your decision was based on what you were told "was best" by everyone, everyone except the voice deep inside your heart.
I am sorry that children and adults who were different like your child were not heard or seen beyond their differences.
I am sorry that my apologies, my sympathy, my voice has come decades too late...for you and your child.
I am sorry that your child, and you, suffered so my child could thrive.
I am sorry.
For the mothers who are with me and who come after me. We must continue to advocate, educate, and be heard for the mothers who are beside us today, for the mothers who will come after us, and especially for the mothers who came before us. We are the voices of the past, the present and the future so make yourselves heard.
As for you Steve Silberman, at first I wanted to hit you with your big, wordy book, because the truth, the history, the "legacy" of autism was just too damn hard to read. However, as I near the end of the book, I realize that we have to learn from the ugly history to make way for a beautiful future, and that many legacies are born out of heartbreak, devastation, and loss. That learning from the past is the only way to move forward to a future where the mistakes of the experts and the mothers before us are not committed again. So, even though your words hurt Mr. Silberman, I am grateful for every single one of them. If I ever run into you, no need to duck, I promise I won't throw your book at you, I am, however a hugger, a hugger with a big, loud, shouty voice. You have been warned.
I am sorry and so very, very grateful.
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