Want to know what kills me?
Perseveration kills me.
Perseveration is verbal repetition. You might call it “harping on one subject” or “just not letting it go.”
Let’s start with a relatable situation: The C train inexplicably makes a 20-minute sojourn in Midtown—“Attention, passengers! We are being held momentarily by the train’s dispatcher. We expect to be moving shortly”—and you end up late to a lunch date. Then, even though you have a million things to discuss, the friend you are meeting wants to talk about your tardiness only. You might have a conversation like this:
“It’s not just today. You’re always late.”
“I know. I’m so sorry. Like I said, I did a great job getting out of the apartment today. Too bad the train got stuck. How is it going at work with your new boss?”
“The trains get stuck every day. You should build that expectation into your plans.”
“You’re so right. I have got to start doing that. Is the new boss a jerk like you thought?”
“They almost didn’t hold the table for us. They have a ten-minute policy on reservations at lunch.”
“I’m so glad they ended up holding it. This place is great. I ate here with my aunt last month. Oh my gosh, did I tell you what my aunt said on Sunday?”
“I looked like an idiot, sitting here alone. I kept saying, yeah, my friend is coming. It felt like forever.”
“I know how you hate sitting alone! Can’t believe I caused that. Did you at least get to do some people watching? I’ve heard a lot of actors eat here.”
“Next time you’re late I’m just going to leave. I swear.”
“I would totally understand if you did that. You look fabulous today, by the way. Is that the blouse you said you were going to splurge on?”
“You’re an old friend. That’s why I put up with you being late all the time.”
“Old friends are always the troublesome ones, aren’t they? It’s funny, isn’t it?: Remember how we used to get in trouble together?”
“Can you please just not be late next time?”
That would be a frustrating lunch, right? By this point you might want to yell, “Shut up! Shut up! I was late! You’ve got to move on!”
Now let’s consider autism perseveration. From the above example, remove (1) provocation (i.e., the late arrival); (2) verbal variation (i.e., the friend’s many different ways of saying the same thing); and (3) any hope of changing the subject (i.e., the reason you brought up the new boss, the blouse, and your aunt). Also, assume that the same topic will arise several times daily, and will last for hours. You might end up with something like the conversation Martin and I just had, which is also the conversation we had a few minutes ago, which is also the conversation we had dozens of times yesterday:
“Mommy, what’s your first name?”
“You know my first name, Martin. I don’t want to talk about names.”
“It’s Maria! Mommy, what’s your middle name?”
“You know my middle name, Martin.”
“And what’s your last name?”
“It’s the same as your last name. Let’s talk about something different.”
“Most people have a first name, a middle name, and a last name, Mommy.”
“That is true, Martin.”
“Mommy, what’s my first name?”
“Martin, look! There’s Uncle Rudy. Can you say hi?”
“What’s his middle name?”
“Hi, Rudy. Martin and I were just heading to the playground.”
[My brother Rudy:] “Hi, Martin! How are you doing?”
“What’s your first name? Mommy, what’s his first name?”
[Me:] “Martin, I think you need to say hi.”
“Hi! What’s your last name?”
Currently, names are Martin’s favorite topic of perseveration. It doesn’t matter whether the object in question actually has a name. (“Mommy, what’s the name of this chair? What is Curious George’s last name? Mommy, that car doesn’t have a middle name?”) Other perseveration topics include bedtime (“Mommy, who am I doing sleepy-time with tonight? Who am I doing sleepy-time with tomorrow? Who am I doing sleepy-time with on Wednesday?”); residences (“Mommy, where do you live? Mommy, I live in New York. Mommy, where does that dog live? Mommy, he lives in New Jersey.”); and, especially, spelling. Martin is clever with the spelling. He draws me in by (I believe) intentionally substituting a different first letter:
“Martin, do you remember when we flew to California?”
“California starts with a K!”
“No. It starts with a C. You know that.”
“And what’s the next letter, Mommy?”
“A.”
“And what’s the next letter?”
You can imagine where that goes.
There is a bright side, of course. There always is. Before perseveration, Martin’s verbal tic was echolalia. He repeated the last word(s) he heard, regardless of whether it (they) made sense in context: “Martin, are you almost ready?” “Are you almost ready?” “It’s time to go.” “Time to go.” The echolalia is gone now. It’s in the “so far gone” category, even. In that sense, perseveration is progress. Martin’s babysitter reminded me of that a couple weeks ago. She and Martin had just returned from a play date with Harry, a nearly nonverbal classmate of Martin’s. Martin was perseverating on sleepy-time when his babysitter said, almost absentmindedly, “I bet Harry’s parents wish he could go on like this.”
More than two years into our recovery journey, Martin still engages in many frustrating behaviors. He loses attention, dawdles, wanders. His low muscle tone causes him to fall out of chairs and also to sit down anywhere—in a crowded grocery check-out lane, on the floor in the Starbucks bathroom, astride the playground rope ladder so other children cannot pass. When his mind works faster than his words, which happens often, he whines.
Of all the behaviors, perseveration is the worst for me. Martin repeats constantly. He talks when no one is listening. He chats merrily regardless of others trying to speak.
I admit this: There are times when I fantasize of yelling, “Shut up! Shut up! No one cares about middle names! You’ve got to move on!”
It’s only a fantasy, of course. If I go to lunch with a friend who can’t let tardiness go, I listen patiently until the discussion finally runs its course. When Martin carries on about nothing, I indulge him, or I say, “I don’t want to talk about that,” or I bite my tongue.
And then I kiss him, over and over and over again.
That’s my own game of repetition, to remind us both that Martin is my everything.