[note: This is in response to the recent statement issued by Autism Speaks.]
Dear Autism Speaks:
My child is not missing. He is right here. I just put him to bed a few minutes ago.
Nighttime is one of our most precious times together. I sing his favorite songs and say our ‘nighttime words’. Some may call it a script; I call it a holy liturgy.
When I am done, he gives me a quick kiss. Maybe he will go to sleep soon after; maybe he won’t. But I am there, and he is there with me. And neither of us are lost.
One of the songs I sing to him is Amazing Grace. These familiar words within its first verse became so clear to me upon reading your press release.
“I once was lost, but now I’m found.”
You see, before our J-Man came into our lives, I was adrift. I didn’t know what the purpose of my life was. I just did my work and often muddled through my days.
But then he came to us as the gift he is, and so much sharpened into focus. I never knew I could love another person like that. I never knew that the purpose of my life could become so clear and so wonderful.
When he was diagnosed with autism, sure I was upset for a time. Diagnosis Day was so very hard. But in time I began to understand that this was my life’s mission now. And I accept it gladly because it means I get to spend it with him.
To make it absolutely clear, I’m not merely existing. Rather, being an autism parent has taught me how to become fully alive. I even wrote an entire book called I Am An Autism Parent as a celebration of that journey of how he transformed me.
My son is not lost at all. He is wonderfully made. Everyone who meets him loves him. He has taught me through his perseverance and courage how to overcome obstacles. Not only is he not missing or lost, he has taught me to find myself too.
You are right at least about one thing. My life is lived moment-to-moment. There is no other way to live life. But you make it sound like a tragedy. I have come to see it as a gift about which to rejoice.
Our J-Man is aware of many minute details, objects, time, and space. Through his life, I have come to see them too, to slow down and become aware of the present moment and all that is contained within it.
You describe many challenges we do face. There is no denying these. However, you imply something that I find to be a horrible misunderstanding of a fundamental truth.
We are not facing these challenges alone.
We are not three million parents isolated from each other. We are a family. Like any family, we disagree about things and often don’t get along. But mess with one of our kids, and we will be the calvary for each other.
The problem is that you have cast a pall of fear over autism so that new autism parents and many who have been at this a while have bought the stories of fear and hopelessness. They see the darkness you have enshrouded autism in.
But we are here to tell a new and different story. We are here to shine a light on autism, to bring it out into the warm sunshine of day.
Ours is a story of hope. Ours is a story where we have each other’s backs. Ours is a story where we reach out for help and a hundred hands are there to greet us. I know this is our story because I am living it.
I have gone through a hellish year this year because of my personal health. But everywhere I turn, other parents, friends, and family have been there to help us. I have faced enormous challenges, but never alone.
This is the real story of autism. And your old story of fear and hopelessness is now finished.
My son is slowly each day developing his own voice. He may be years ‘behind’ in typical development, but slowly, surely, inexorably, he is developing his voice. He has things to say, edging their way out like a seedling toward the sun. And as time passes he will say more and more, and we will continue to rejoice.
And you will never speak for him. Our role is to help him learn to speak for himself, to proclaim his own truth, to direct his own life in the way he chooses. And I will teach him the same stories of hope, determination, and perseverance that my foremothers and forefathers passed through the generations to me.
One major crisis is that the general public doesn’t understand how awesome our children and loved ones, younger or older, are. You think they are lost and broken. And society has bought your lies. They treat those we love as second-class citizens.
No more. We are rising up as one to tell a new story.
You have wrapped this horrible story in half-truths. These are the worst kinds of lies. You were entrusted to be an advocacy organization, and you have betrayed us.
You call for a military-level response to issues of autism, and you will get one. We are the calvary, and we will tell our new story.
We will proclaim a new hope. We will proclaim the value and integrity of each and every person. We will respect each other in our diversity and welcome all persons to the table. Whether each person expresses themselves through their own voice, an assistive device, sign language, handwriting, or any of countless other means, their voice shall be heard.
You want a national response? You got one. Here we are. We are autistic and neurotypical and everything in between. We are parents, children, and adults and each of us loved, younger and older and every age in between, autism families, educators, and caregivers. We may disagree about many things, but we are one in our belief in those we love.
Whether it is my son, my friends’ children, or autistic persons of all ages – many of whom are adults you seem to deny even exist – we will fight for them with every ounce of strength we have. They will be valued and respected. They will have the supports they need to achieve the fullest expressions of themselves. When people put them down, we will have their backs.
We will carry our mission into every conversation we have, every school and office building, every legislature and branch of government. We are not in despair; we are relentless in our determination and hope.
We are not foolish. We know the challenges are enormous. But as I put my son to bed each night, I know that somehow I will be strong enough. He has shown me how to be strong, to meet challenges and overcome them, to persevere and never give up.
“Through many dangers, toils, and snares I have already come.
‘Tis grace that’s brought me safe thus far, and grace shall lead me home.”
Because of this I know this is not a crisis; it is pure grace. I reflect on all the other parents putting their children to bed, and I feel our solidarity, our oneness in love for our beloved children. I think of all my autistic adult friends who inspire me every day with their courage and rallying voices. We may have a long way to go, but together, I know we are going to find our way home.
We have come a long way in spite of you, and we will join together now to lead this movement forward without you. Let us go forth in respect, grace, courage, perseverance, and hope.
Allow me to close with the words I vowed to my son starting on his Diagnosis Day. It encapsulates everything I believe I should be. He was never lost or taken from me. He was right where I dreamed he would be. And I chose him, the day he was born and every day since.
I pledge to love you and be right there with you every step of our way together.
No matter what comes, no matter what challenges we face, no matter how frustrated you get or how afraid or overwhelmed you become or how much or how little you say now or ever, I’ll do everything I can to see you through.
And together we will discover what you love most and what you most love to do, and we will help you share every gift you have with the world.
I chose you. I chose you the day Mama and I formed you and forever before that. I chose to walk all of the days since I was born to find the path to you, to find you right where I’d hoped you would be.
I chose you the day you were born. I’ve chosen you every day since. And I will choose you every day for the rest of my life.
You are our gift. You are the world’s gift. And there is not anything that could ever change that.
I am so happy that you are you.
Yours in celebration of the awesomeness of all,