“Do you have a HUSBAND?” Jack barked at the woman who was cutting his hair. She looked uncomfortable, and quietly murmured that no, she was no longer married. “Where did your husband GO?” By the time I made my way over to him, he was asking, “Well, if he’s GONE then what kind of car does he drive? How many people does it fit?”
It was the first time Jack had met her, and he was performing his usual reconnaissance for information; a line of questioning that typically begins with marital status and covers topics like cars and birthdays and shampoo. If left unchecked, he’ll ask the person when they think they will die.
Sitting in the overheated hair salon, I wished for the millionth time that there was a universal sign for autism. Some sort of hand signal or gesture to let people know that Jack can’t read social cues or facial expressions; that the unseen barriers in his brain prevent him from understanding when he’s making someone uncomfortable.
It’s pretty easy to spot a blind person and people with physical handicaps. But Jack’s disability is buried deep inside his mind; instead of struggling to walk or see or hear, he struggles to communicate. He struggles with concepts like empathy and cognitive flexibility. Sometimes it seems like no matter how much we work with him to consider other people’s feelings before he opens his mouth and lets the questions fly, he’ll still wander up and ask a stranger if their mother is dead yet.
In a perfect world, I would make the sign, and everyone around us would nod their head and smile in agreement. Ah! Autism. Yes, now we understand. We understand why he gets up to stim at a restaurant, galloping between the tables with his fingers in his mouth, and claps his hands over his ears at the movies.
For now, I can get away with quietly mouthing the word autism above his head while I run my fingers through his soft brown hair. You know, like the last time we ate at a Mexican restaurant, and Jack approached a large man and brayed, “Why ARE you so BIG? Did you just EAT too much?” But a universal sign would be so much simpler.
A sign would really come in handy for those times when the fine line between sees the world differently and bad behavior becomes blurred; when people are taken aback by his candor and honesty.
I brought up the idea to nine-year old Joey and he said, “That would be awesome! I could use it when kids at school say he’s weird or when the bus driver gets mad because Jack doesn’t always stay in his seat. But what would the sign be?” I admitted that I didn’t know.
It would be helpful at family gatherings, when Jack shouts out things like, “What the HELL! That chair is so STUPID!” after he stubs his toe. We could remind our loved ones how hard he’s working to express himself, how frustrated he gets when he’s anxious or hurt. We could remind them not to judge our blue-eyed boy for the words he chooses, but to honor his feelings instead.
With this sign, I could dismantle the outer layer Jack’s built to protect himself from our confusing world—like a turtle in a shell, he hides behind his bossy and controlling behavior. People could see the sweet, funny, vulnerable boy underneath. The boy who loves bowling and Katy Perry, who wants nothing more in the world than to be with his three brothers and one sister.
It would also come in handy when Jack uses his middle finger to point at things, a habit of his we just can’t seem to change.
Joe and I could use this to signal each other in moments when we’re both stretched thin by his demands, his needs, his obsessions. When we’re both faltering under the emotional weight of an autistic child who talks endlessly about license plates. It would prompt us both to remember that Jack is more than the tantrums, more than the obsessive behavior, more than I can’t do math and oh no I am not taking a shower.
He’s the boy who makes me smile every single time he walks in the room.
With that in mind, I thought of the perfect sign. Take your hand and hold it up with the fingers extended. Then use your pointer finger and thumb to form a circle: okay. Because autism really is okay.
In fact, sometimes it’s even better than okay.