Sometimes I get asked to speak to people about autism, which is sort of funny because I don’t have autism. You do.
Before I have to speak, I prepare in the same exact way.
I go online and look up the latest statistics and I learn the same exact thing: more and more boys and girls and men are women are diagnosed with Autism Spectrum Disorder every year. At one point it was 1 in 100 people, then it was 1 in 88, and now the numbers seem to hover around 1 in 55.
Then I poke around on different websites to see if science has figured out where it’s all coming from or what’s causing it. They haven’t.
Lastly, I pull up a bunch of articles about special diets and hyperbaric chambers and therapy dogs and vaccines and allergies.
When I’m finished with my research, I look it all over and tried to write my talk, but I realize I don’t really care about any of this stuff all that much.
I care about you.
One night you were scooping the last of your ice cream out of your bowl and I said, “Hey, guess what, Jack! I’m going to talk to a group of dentists tomorrow—a roomful of people like Daddy!”
You hesitated for just a second, and then you said, “I think that for you will be hard.”
I asked you why and you looked out of the corner of your eye and said, “For you are not a DENTIST. You are for just a MOTHER.”
Then the next morning I went back to my desk and I did what I always did: I deleted all the statistics and the research and the notes and the stuff about gluten-free pretzels. See Jack, I don’t need to stand up in front of people and tell them all about things like that. They can learn about it on their own, if they want.
And so I sat down and began to write the exact same thing I always write. I wrote you a letter.
I always write you a letter because I think it helps people see you and hear you and know you, as if you’re standing right next to me on the podium. I add a lot of new stuff each time I write one, but there are also a few parts I keep the same, because some stories are just best told in person.
Someone once asked me what it was like to have a son who is diagnosed with autism. And I shrugged my shoulders and said something like, “Oh, it’s fine, I guess.”
For the rest of that I day I thought about the question. I tried to come up with the words to describe what it’s like to be your mother.
I think it’s as if, your whole entire life, you’ve told yourself you don’t like pickles. Pickles are weird. You hope you never, ever have to deal with a pickle.
Then one day the guy at the deli makes your sandwich and he forgets and puts pickles on it. You’re really hungry, and you have no other choice so you bite into the sandwich with the pickles.
You’re surprised to find they are crunchy and tart and tasty. In their own way, pickles actually add flavor to the rest of the sandwich. They make it better. From that point forward, you cannot live without pickles.
Pickles have changed your life.
Sometimes, they make you bite your tongue, and they can bring stinging tears to your eyes. They surprise you, but you love them all the same.
Jack, I want people to know that you’ve been going to doctor after doctor since you were about six months old. At first, it was because you had really terrible ear infections and an awful, barking cough that never went away. You had something called reflux, and eventually we had to have tubes put in your ears and your adenoids removed.
Then when you were about a year old we started to see specialist after specialist, because you didn’t seem quite right. I know that’s an odd way of saying it, but it’s the best way I can describe it. You seemed faraway and withdrawn, as though you lived inside of your head all the time instead out in the world with us.
So, they tested everything. They tested your hearing, and the way you stacked blocks, and asked you to point to pictures of puppies and umbrellas and the sun and the moon.
Time after time, we watched through a window as they guided your chubby hand around a puzzle piece or helped you grip a crayon.
I don’t know if you remember this, but several different therapists did exactly the same thing. They would bring out this fake birthday cake and a grubby, balding baby doll with the kinds of eyelids that moved on their own. And whoever was testing you at the time would start to clap cheerfully and sing, “Happy Birthday Baby! Jack, can you sing to Baby?” and you just sat there staring off into space.
I hated that doll. In fact, and I know this isn’t a nice thing to say, but there were times when I wanted to punch that doll in it’s rubbery face.
But all the early testing and stress was worth it, because we learned you were speech delayed. We learned you had something called sensory issues, and social play—singing to dolls on their weird fake pretend birthday—made no sense to you.
We learned that you have autism.
In first grade we went to more doctors because all of a sudden you started to talk to yourself. You stopped sleeping altogether, and you were too scared to walk outside in the cold. You were crushed under the weight of anxiety, and we tried a bajillion ways to ease your distress. Eventually, the doctor suggested a small white pill before bed, and that worked.
Then in third grade we went to a bunch of eye doctors to figure out why you angled your head to the side and only read out of one eye, and we found out that your left eye would rather sit on the couch and eat potato chips all day while your right eye does all the work. There’s a big fancy name for this, but most people call it having a lazy eye.
Whether we’re going to see the eye doctor or the occupational therapist or the dentist, we do what we call social stories to prepare you for the visit. This way you know what to expect.
“The hygienist is going to clean your teeth.”
“Jack, the doctor is going to look in your eyes.”
“The lady is going to ask you some questions.”
We encourage you to sit up, to sit still, to answer politely. We tell you how long we should be there, and come up with something fun to do afterwards as a reward.
And as the appointment approaches I always call the office to remind them that you are diagnosed with autism spectrum disorder, that you may have trouble sitting still or following directions.
“He has autism, so it might seem like he doesn’t hear you. If you speak slowly, that helps.”
A few months ago we had to go to see a doctor—I don’t even remember for what or where—and as the nurse led us back to the exam room, I noticed something written across your chart in big, bold letters. It was as though someone had used a black Sharpie marker, like the kind you got ahold of when you were three and used to draw all over the walls. Do you remember that? Daddy had to repaint the entire living room and it took two gallons of paint to cover it.
Sitting in the exam room and seeing those letters on the paper, I felt uneasy. I felt umoored; like a sailboat drifting on a wide, open sea.
I looked over at you to see if you saw the word, because you are eleven and can read and everything, but you were absorbed in explaining why the Ronettes make the best music ever to the nurse.
I was grateful, because there are some cracks not even a gallon of paint can cover.
You know the population of Zimbabwe, but the other day you asked me what brave meant.
You hate math.
You bite your nails when you’re nervous.
You start a load of laundry as soon as you get up on Saturday morning. I have no idea why.
About a year ago we were all snuggled on the couch for movie night. You like to be the boss for movie night, and you were adamant that we watch the Wizard of Oz—again. Everyone agreed to see it one more time, and we settled into the story of Dorothy and the Tin Man, the Lion and the Scarecrow.
When the movie was over you said, “The Lion. He has autism.” Right away I sat up on the couch and asked you why you thought that.
You waited for a second and looked off over my shoulder. “Because. He is afraid. All the time.”
When you said this, my heart squeezed shut and it felt like something big and lumpy was in my throat, kind of like the time you took a really big bite of your cheeseburger and it was hard to swallow.
You live in fear every day, Jack, I know. You are afraid of everything from fire drills to fireworks, the wind chill factor and trying something new to eat.
Anxiety beats within you like a caged bird without a voice, and all day long you work hard to keep this bird from taking flight into the wide-open sky. You cover your ears when you see fire trucks and you screw up your face to take the smallest bite of Daddy’s quesadilla. You zip your coat up against the cold.
You do not give in to anxiety ceaseless beckoning. I think this is what it means to be brave.
You wake up every morning by 5:45.
Music is the very air you breathe; the rhythm of you heart and the song of your soul.
Your nickname is Jack-a-boo.
Jack, tonight people might ask me my advice about autism—how to make their patients on the spectrum more comfortable and more at ease when they need cavities filled or teeth extracted.
They’ll wonder if they should keep the lights low, or play classical music. They are curious about how to get you and others like you to sit for cleanings and x-rays and exams.
I think they will be disappointed with my answer and I feel a little bad about that, but I can only tell them what I know. I can only share our own truth.
I am sure online there are lots of articles about the right color paint for the walls and how to dim the lights and play soft, soothing songs on the loudspeaker. There’s probably a ton of websites dedicated to telling dentists how to create a welcoming, inviting environment for people like you, people with special needs and sensory issues and expressive language delays.
All of this is very helpful and good.
Mostly, though, I think it helps if people can remember you are more than a label or a diagnosis, more than A-U-T-I-S-M in spelled out in big, bold letters across the chart.
You are hope and mystery and courage and fear.
You are an 11-year old boy whose favorite ice cream is Breyer’s mint with chocolate chips.
And last week, while we were out for lunch, you took your very first bite of a dill pickle and said, “It is. For better than I think.”