What Autism Used to Look Like
Posted on February 9, 2015 by Carrie Cariello
Dear Christopher,
I’m not sure if you remember me, but we were in the same class in third grade. I was tall for my age, and I had long, blonde hair that I usually wore in messy braids. You had very dark hair and brown eyes. You were a little chubby, and I remember you wore a white t-shirt and jeans a lot. Sometimes your jeans slid down and your underwear showed. You talked all the time about the sizes and shapes and colors of different matchbox cars. Sometimes you got really, really angry and started bellowing and screaming and jumping. One time you threw a chair. We thought you were a bad boy. We thought you were weird and scary and out of control, and we tried to stay out of your way. Another time you flew out of your seat with your pencil in your hand and in the blink of an eye, you stabbed a girl in the arm with the tip. Both of you looked stunned. She started to cry, and the teacher brought you out of the classroom. That was the last time I remember seeing you.
Now we have words to describe the way you felt and behaved.
Sensory processing; Perseverative behavior; Overstimulated; Maybe—just maybe—autism spectrum disorder.
See, Christopher, my son has autism. His name is Jack, and he is ten. Jack doesn’t like a lot of noise. He covers his ears if I am using the blender or vacuuming. When he gets home from school, he likes to go upstairs and lie in my bathtub with all of his clothes on. He isn’t taking a bath, he’s just lying there. He says it’s quiet for him after a busy day at school.
"Everyone. They talk-ded so much to me."
He loves music and street maps and baking cakes.
I am learning how to listen to someone who needs to talk a lot about cars and license plates and maps and street signs. I am learning how to make my voice quieter, and my sentences shorter, and to vacuum really, really fast. Some days he drives me crazy, but most days he makes me smile. Every day, I am learning to live alongside of autism. And I know. I know the wild look in a small boy’s eyes when everything has all of a sudden become too much.
If I could, I would time-travel my 40-year old mother-self back to third grade and hold you. I would smooth your damp hair back from your face and rock you and whisper quiet body quiet body quiet body until you relaxed. You see, I’ve done this many, many times. Now I write about autism. I write to try and understand
this puzzling phenomenon a little better, so I might unlock the secrets of my son’s mysterious mind a little more. I write so people can see how incredible and hard and complicated it is. And people write back to me all the time. They write about their sons and daughters and grandchildren and neighbors.
My daughter was literally diagnosed with autism yesterday.
My 3-year old grandson has autism. I am trying so hard to understand him and to know him.
Some days, it’s as if the world is too much for her.
People write me long, beautiful messages describing the poetic beauty they witness every day.
The sky is simply a different color in his universe.
I love her lens to the world.
It feels like we are a scrambled egg in a fried world.
They tell me how much they ache to connect with the enigmatic person in their lives.
I want to hear my daughter say "I love you," if only once.
Why can’t I hug my son?
You can absolutely love your child as he is and break your heart over him at the same time.
They write to tell me the many ways in which they celebrate unusual, extraordinary, different.
Your boy says Wednesday is orange? Well mine thinks that Wednesday is purple. And we’re ok with that.
He’s an expert on all the varieties of M&Ms ever invented.
The world needs more people like him.
They help me understand their own condition.
Autism does not have to stop you from doing wonderful things in your life. For that matter, sometimes, autism is a super power. It lets me see sides of life that normal people cannot see. I’ve had days I love being alternatively wired, and days I wish it would go bother someone else for a change.
My Asperger’s is, has been, and probably will be both a blessing and a challenge, and I’m slowly learning to be grateful for it.
If someone were to ask me if "I could be cured I would," or if "I could go back and change it I would," the ultimate answer is no.
I’ve come a very long way, yes. I believe in progress, yes.
And then, Christopher, there is my own divided heart; my commitment to telling our story, while at the same time balancing a young boy’s tender struggle to come to terms with his own diagnosis.
Mom. People will read it. They will know for my autism.
But I am starting to realize that some stories need to be told, or the shame and rage and fear will overflow his heart like a laundry basket full of too many dirty clothes and he will forever feel alone.
The world can feel lonely sometimes, but we’re never alone.
We are not alone. You are not alone. He is not alone.
And in spite of the long days and nights without sleep and tantrums in the grocery store, we dearly love this boy. In spite of the debates over vaccines and pesticides, heredity and genetics, we know he is right where he should be.
I wouldn’t change him. I would never change her.
He is who he is as God made him, and God doesn’t make mistakes.
This week, one comment in particular really caught my eye. It was an e-mail from a teacher, and it made me think of you, Christopher.
Every child needs a champion. Because of you, Jack has many champions. He has something called a paraprofessional; the kindest, gentlest young man who helps him navigate his fifth-grade day. I can tell when things are getting to be too much for him, and so we take a walk. He has a soft-spoken teacher who researches special little projects that might appeal to Jack’ interest in baking and help him master fractions at the same time. I found a cake recipe, where he could use math to double the amounts. I think this would really help him understand the concept better. He has a speech therapist and sensory breaks and something called an Individualized Education Plan.
All of these things help Jack talk and listen and learn. And when he’s had enough, he can listen to music in the bathtub.
Because of you, people who are unusual and quirky and extraordinary have better days. Tolerance has replaced judgment, and we are beginning to understand that
there is more than one way to make an egg. Autism is not a condition to be mastered. There are no experts. But together, we are getting closer and closer to understanding this tricky thing called spectrum disorder. We are moving towards a sky that is bursting with many brilliant colors.
Thank you, Christopher. Because there were kids like you, now there can be kids like Jack.
I don’t know where you are now—whether you are married or single or have a family or live alone—but I hope you found a place in this world that’s a little kinder.
I hope you found a champion.
Best, Carrie