Susan Senator

Here is my latest post for Psychology Today. Enjoy!

Even back in 2005 when Making Peace With Autism came out, I knew that I’d made a terrible mistake with the opening sentence: “The hardest day of the year for me is Nat’s birthday, November 15.”

How could I have thought such a thing, much less published it for everyone to see?

What if Nat saw?

Realistically, he wouldn’t because he doesn’t read books like that. But still. Imagine a child seeing that.

Further on I wrote:

Of course, Ned and I are happy to celebrate Nat’s birthday, going to great lengths to come up with presents that catch his quicksilver attention and baking a cake slathered with frosting because the frosting is the only part he’ll eat. We invite all the family members who can make it. But no friends, because Nat has none. No, as far as we’ve come being Nat’s parents, we cannot say we enjoy his birthday. Ned feels it’s because Nat’s birthday makes no difference to Nat himself.

God damn it. Nat has no friends? Garbage. He’s got friends here that he’s had since he was ten. He’s got friends in his group home. He’s got friends from his teams, from his day program. But that’s how I saw things. Remember, back then I was making peace with autism, it was a gerund, a verb in the active tense, I had not made peace with it.

Oh but that’s why we love your writing; you’re so honest, no sugar-coating, people say, as if that excuses it, this public breast-beating. Poor me.

Poor me, when I’ve got a healthy 30 year old (on the 15th) who has a place in the world, family who loves him, friends all around, healthcare, and two nice homes.

Look: I gave birth to a neurologically atypical son. That means he does not perceive things the way the average person does. That means he understands things differently from normal, or maybe not at all. That means he has to be taught explicitly anything we need him to be certain of. Safety. Self-care. Asking. Answering. Counting. Reading. Public versus private behavior.

We used to even teach him how to play. Kids must play, right? And boys must play with cars, or role play, or play games.

“Put boy in car. Car goes ‘vroom.'”

We were told that if we give him the tools, like the mechanics of play, he would collect them in his experience and begin to expand from there, playing naturally.

Nope, never happened.

I came to understand that typical fun is not how Nat experiences fun. We don’t quite know how he experiences fun, and we still don’t. And yes it makes me sad that I don’t have too many ways to have fun with him. Again, poor me.

Because I do have fun with him. It’s that hanging-out kind of fun. I’m a talker, so I don’t get to do that with him. So instead we’re active. We shop. We cook. We walk. We go to parties together, because his friends are our friends, and their parents are our friends. Ned and I joke that we have a social life because of Nat.

Even back then, when Nat was four or five, it seemed stupid, irrelevant, and sad to spend time showing him how to act like a typical child. Mean, even. What was he, Pinocchio? Not a real boy? His was an ABA school, and I loved the place, because Nat did learn there! But I didn’t like the way it was all ABA or the highway. Never Nat’s way.

And with ABA, at least back then, all the messages were, “you’re not enough the way you are. You have to relearn that, do it this way.” Constantly battle with your own instincts and impulses. All so that you can blend in.

How insane is that? We’re all individuals. Blending in means to some extent losing yourself among the others.

We were teaching Nat to lose himself even before we knew who he was.

Well, now we know. Nat is a (just about) 30 year old man who likes his space. He loves singing in his band. He loves when he knows exactly what to do (who doesn’t?). He loves just about any activity, new or old. He’s flexible (except during his times of great anxiety, which do come every so often. We just finished one when he was smacking his head a lot). He loves being around people as long as he doesn’t have to talk much. But sometimes he even likes talking, if the conversation is clear and focused on him. If the answers aren’t floating around out of reach.

Nat loves attention. Positive attention, like when he sings. Nat does not like to feel lost in the crowd. Nat likes to know what to say and what to do. He loves cues.

He does not like to blend in and we no longer believe he has to.

I guess I still haven’t made my peace with autism — it is hard for him, dammit, it is! — but I sure do know how I feel about Nat. He’s amazing. And his birthday is the celebration of him, blond, bright, and beautiful, smart and sassy, secretive. Devoted to his friends and family and traditions.

A guy who will always be there for you.

A guy who loves with all his heart.

So on his birthday, I celebrate all that is Nat.

And I hope he is happy.