Saying Autism Out Loud

We took a family trip to Boston over the holidays. While walking my son through the hotel lobby, my wife passed a bellhop who said to Lucas:

Hey there, buddy.

When he failed to get a response, the bellhop jokingly took it personally.

Oh. You don’t want to say hi to me?

To this, she replied.

He doesn’t speak. He has Autism.

Then they walked on. No long discussions. No educational seminar. Not every mention of Lucas’s Autism has to turn into a learning experience for someone. It just is what is. Sometimes that’s all that matters.

windowYears ago, a response like that would have been unheard of for us. After all, it would have been easy to just smile at the bellhop in a way that says, “Yup. He totally hates you, dippy” and continue walking. What difference would it make? Who is this guy anyway?

I think that’s the main differentiation that needs to be made here. In his younger days, we didn’t withhold our son’s Autism out of misplaced shame or sadness. It was more of a, “What business is it of theirs?” type of thing. Why bother telling a bellhop we’ll never see again?

It was different then, though. Up until that time, Autism had been silent thoughts that turned to quiet whispers around our home. It was a private matter that we saw as something we were privately handling. Today, it’s a part of our lives and my son is part of the world.

I had seen Autism as a serious and secret word in my mind. It brought up stress and sadness and loss and fear and a million other heart-wrenching emotions that weren’t based on anything concrete. It wasn’t until I began to tell others outside of our inner circle that the word lost some of that mystique. Soon it was just another aspect of our lives and categorized along with all of the other quirks in our family.

I actually remember the first time I joked about it. It was when Lucas was around three and we were preparing to go to a party. I said we should tell people that he’s very politically active and the reason he doesn’t speak is because he’s vowed to keep silent in protest until those being oppressed around the world were given their chance to speak. It lightened the mood at the time and I still laugh about that one in my head.

Lucas shares jokes with me too that center around his behavior. In fact, humor seems to help us get ahead of some difficult times. If I’m able to predict an upcoming tantrum, say at bedtime, I will do it myself before he can. With an outstretched hand, I will call out, “Time for bed!” Then I will suddenly drop to the floor with my arms outstretched and let out a loud cry. It’s identical to what he was planning on doing and, seeing me do it first, will cause him to stop short and laugh his little head off. It gets him every time.

His personal favorite (but not really mine) is my head hit game. When Lucas doesn’t want to do something like cut his hair or hear a certain song, he will make eye contact and tap his head. If you continue to do it, he will hit his head even harder. That’s usually when I immediately spring into a panic and try to comfort him. I always hated it and, while I was happy that he was trying to communicate, I was unhappy with how hard he was hitting himself in order to make his point. So, like bedtime tantrums, I got ahead of it by taking away the serious nature of it all.

loud.jpgOne song that always brings on a tap is Raffi’s Little Red Wagon. He doesn’t want me singing it for some reason. Knowing this, I turned to him one day in his room and began belting it out with the familiar opening of, “Bopping up and down in my little red wagon…”. However, just as the sentence ended, I loudly slapped myself in the head exactly as he does and fell to the floor like Ric Flair taking a chop to the throat. As I stumbled back to my feet, I kept singing, and did it again. He loved it. To this day, the hard head slap has become more of a funny thing that Daddy does rather than a scary thing that Lucas does.

Without taking away the heavy-handed tone of Autism, that wouldn’t have been possible. I would be too tied up in knots over the fact that he’s his hitting his head than trying to change it in a funny way. It’s the ability to speak freely about this behavior that we once categorized as heart-wrenching that took away its power. At least in my house, being open about Autism is how we really break through.

Being able to do that comes with familiarity. It comes from being open to strangers like that bellhop and not holding back even when it makes for awkward moments…kind of like that time I had to call Verizon because my cable box wasn’t working.

Lucas was in the living room, watching his favorite Raffi concert and screeching like it was his job. His high pitched shrieks, which everyone living in my house has become accustomed to, filled the air. We could hear him in the background of my customer service call.

OK, Mr. Guttman, we’re going to get our tech team looking into that cable box for you now. Just doing a few tests. How are you today?

I’m doing well. Thank you.

Yeah. Say, do you have birds?

Birds? No. I don’t have birds.

Really? Are you sure? I, uh, think I hear some birds back there.

Oh that? No. That’s my son. He has Autism and he’s screaming while watching a show he likes.

Oh.

Long pause.

 Yup. So…Any word on those cable box tests?

To this day, it still surprises me that he asked if I was sure I didn’t have birds. I don’t know how he thinks that could have slipped my mind. Either way, the moment might have been awkward, but not for me. I’m good. The more open you are about something, whether to yourself or others, the less awkward it can be for you.

My son has Autism. He’s non-verbal. He might speak one day. He might not. I say those things out loud now. They’re not fears. They’re facts. I love both of my children for who they are. If Autism is part of who he is, then it’s one of the many reasons why I love him.

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