Last week my son Jack brought the mail in, and on the top of the pile was a brochure with a picture of a man. Underneath his smiling face was the title Autism Expert.
Jack had some questions.
We both did.
We looked at the picture and we looked at each other and then we looked down at the brochure again.
We were confused, is what I am trying to tell you here.
Do these people exist? Autism Experts?
Where have they been hiding all this time?
What do they know that we don’t know?
Jack was diagnosed with autism fifteen years ago. It was 2005, and I assure you there were no experts back then.
There were kindly doctors and helpful therapists, but not one confessed they had the answers to this tricky, slippery disorder.
There was a whole lot of we’ll-have-to-wait-and-see head tilts, and a few tentative shrugs, but not a whole lot of direction.
I could have used an expert when Jack was two, and I brought him to the zoo. He refused to stand on line to see the lions, or the gorillas, or the llamas. He ran away from me like he was possessed. He stole pretzels off other family’s lunch trays.
And for the first time, I told people around me who were gaping and staring that he has autism, we just found out he has autism.
I have repeated it thousands of times since, like a finger tracing a bruise.
My son has autism. I tell everyone I know.
Jack is sixteen now. And we could still use an expert, if I’m being honest.
Mom. Can the expert take away. My fear?
I call it anxiety, he calls it his fear.
No matter the name we say, it dominates his life. It steals his smile.
Maybe an expert could help him ease his distressed spirit.
Every morning I open my eyes to the sound of his waking. I turn over on my side, and watch the sun break brilliant color across the sky. I think about the day ahead—how to keep him busy and engaged and maybe teach him something new and also get through the repetitiveness without losing my mind.
I badly need an Autism Expert.
I need one as I try to describe jealousy and equity to my other children, and how it is impossible to love two people exactly the same.
I need an expert now, because many days I am sad. I am alone. I am failing.
This is my raw, ordinary truth.
Can he make my body. For stillness.
Could an expert remove the invisible ants that travel along my son’s limbs, making him jump and hop? That would be good. It would be nice if he could relax for one single second.
I need an expert to tell me what to do when we drive through town and we see all the election signs and Jack asks every time if I have ever met them in person.
What would this expert suggest I do?
I have a feeling an Autism Expert would not advise shouting that one may light one’s own hair on fire if she is forced to answer another question about a candidate.
I need an expert to counsel me about patience.
And also to remind me not to shout.
I especially need an expert to read through the IEP paper work. Because that stuff is crazy hard to understand.
It is an endless uphill climb. Are we taking the right steps? I don’t know. I may never know.
Autism is too big. You cannot contain it with words, or hold it in the palm of your hand.
I guess the question is, when it comes to autism, who has the most experience?
Or the father who sits beside his trembling son, the floor littered with shattered dishes?
Maybe it’s the teachers, bus drivers, paraprofessionals, cafeteria workers, occupational therapists, or speech pathologists.
Or the people who have understood the depth of fear and sadness as their own—who have sat across a long table in an airless room, and watched a family fall apart.
It might be the siblings with eyes of steel, and hearts of glass.
The sister who feels the barometric pressure drop before anyone else in the room—who knows when the tantrum is coming, when the rage will descend, and when the quiet is possible.
Or the teenager who cancels on his friends to take his complicated brother out for pizza. Who knows when to hug, and when to listen, and when to explain.
I don’t know. Maybe there is no expert when it come to autism.
Maybe there is family, and science, and heartache, and discovery.
Or could it be him?
This dream-chaser, this sky-finder, this answer-seeker.
Mom. No one is the expert. Of me.