What Will We Remember?

Friends visited us recently with their son Robert, who is younger than Martin and less far along the autism recovery journey. Robert kept his mother busy, as she had to pull him repeatedly away from his fixations—trains, colors—to get him to eat or otherwise join the group.

After our guests left, Adrian said, “Robert can be a handful!”

I replied, “Reminds me of Martin a few years ago.”

“No, Martin never had obsessions like that.”

“Excuse me?” I asked.

“I remember when we always had to take the Brooklyn Bridge home, and how he liked certain train lines, but he wasn’t so challenging as Robert.”

“Are you talking about our son, Martin?”


“So you’ve forgotten when I had to buy placemats in different colors so he could practice using something other than yellow without having a meltdown?”

“That’s right. I did forget that.”

“And the panic if he boarded a subway and no yellow seat was available?”

“I guess he did that, yeah.”

“Then there were the times when he and I had to wait for the No. 2 subway, because if a No. 3 came instead, he’d scream with fright, even though he knew it went to exactly the same place.”

“You did used to tell me about that.”

“How about when he couldn’t go to school unless he had that pink stuffed bear from Chicago in his backpack? When he had to approach and open every mailbox we passed on City streets? When he refused to enter the wine bar if ‘our table’ was occupied? When he—”

“Okay, fine. He did have all those obsessions. It’s easy to forget what those days were like.”

This conversation made me reconsider the previous posts “So Far Gone” and “Manifesto.” One day, when someone says, “Maybe Martin never had autism,” will I respond, “Maybe not,” because I too have forgotten? How will we bear witness to recovery as more and more symptoms become so far gone that we forget they ever existed?

I have his earliest developmental neurology reports, the ones that describe a child unresponsive to his own parents, unaware of his own name, echolalic, in the first and third percentile of expressive and receptive language. Those tell the early story.

And I have this blog.

The Way He Talks Now—It’s Just Really Cute

Yesterday in the car, during a Bon Jovi song on the ’80s on 8 station—

Martin: “Apparently we’re going to hear some Phil Collins soon.”


Me: “How do you know that?”

Martin: “The announcer just said it, on the radio.”

I’d heard, vaguely, the announcer say something before Bon Jovi.

Me: “Oh, really? I guess you were listening better than I was.”

Martin: “I guess I was.”

I once had a child whose only language was echolalia, who could not independently string two or three words together. Can you imagine the joy in a moment like this?

Two songs later: Phil Collins.

Perseveration. Perseveration. Perseveration. Perseveration.

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?”


“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.

I Don’t Know

“Mommy, I don’t know.”

Martin said that this week, in a response to a question about a stuffed panda bear’s nose. The conversation ran like this:

“Martin, what color is Panda’s nose?”


“Silly! It doesn’t seem yellow to me. Look again?”

Martin hesitated, studying the panda’s nose, which had once been black but faded to some flecked gray that apparently defied description, at least for Martin. At last he said, “Mommy, I don’t know.”

Until now, when Martin didn’t have the answer to a question, he would resort to echolalia and repeat the question: “Martin, what are you doing?” “What are you doing?” “Martin, where are we going?” “Where are we going?” For weeks I’ve been trying to get him to say instead, “I don’t know.”

It’s advanced, when you think about it. To say, “I don’t know,” is to (1) comprehend what the question seeks; (2) realize that it is capable of being answered (e.g., the question is not, “What time is that tree?”); (3) understand that, although an answer exists, you do not possess it; and (4) roll those concepts into a response. Saying, “I don’t know,” is a manner of implying absence: Knowledge of this matter exists; it is absent from my body of knowledge.

This week, Martin made that implication. Just once, I’m afraid. Later the same day, he answered a question with, “I don’t know,” when prompted: “Martin, where are your shoes?” “Where are your shoes?” “It’s okay to say if you don’t know, buddy.” “I don’t know.” He has not again admitted unprompted that he doesn’t know an answer.

But he will. That’s the way these new skills come, sometimes. Once, not again, a few times, an avalanche. So he will.

When? Oh, I don’t know.

Hard Truths

Where have I been, these two months?

Let’s talk hard truths.

I’ve been dealing with Martin, who’s been nowhere near where I’ve wanted him.

Over this summer, something went awry, and his progress hit a plateau. I did not see significant improvement.

Honestly, I don’t really recall seeing any improvement. We had some firsts, like supermarket walking and approaching a stranger. At the end of July, a friend sent me an email stating that her husband, upon interacting with Martin for the first time in several months, “thought he seemed great—real improvement since last time!” But the jagged ascent to which I’ve become accustomed—progress, little setback, progress, little setback—evaporated. At times the summer felt more like uneven descent: no progress, little setback, no progress, little setback.

Finding My Kid is “a parent’s real-time blog of autism recovery.” It’s hard to post reports when no recovery is evident. It really is. It’s even harder when the author descends into hopelessness, into questioning whether she’s abandoned her career, her church work and activism, and large chunks of her social life in pursuit of a goal that never will be reached.

Then, two weeks ago, Martin tanked. I mean, tanked. One day I felt like, though progress had leveled off, at least I had a child without perceptible autism, and the next day I had a child with myriad classic signs of the disorder. In our apartment Martin ran compulsively to and fro, chanting “d-d-d-d-d-dah, d-d-d-d-d-dah.” He lost eye contact and name responsiveness. He threw tantrums when not allowed to watch one video repeatedly. Echolalia resurfaced. It was as if a year of progress disappeared overnight.

I consulted with his doctors and therapists. The prognosis was unanimous: stress. Adrenal stress, systemic stress from doing too much. Martin’s delicate system cannot keep up with the amount of detoxification we’re imposing.

We pulled back immediately. I took him off almost every agent meant for detoxification, whether heavy metals, parasites, viruses, or otherwise, and I kept him on only supplements and agents meant to support his adrenals.

With those changes, Martin shows signs of improving again. The repetitive behaviors, though still present, are diminishing. He’s making eye contact, albeit unsustained. Adrian and I are subjected to near-constant whining (hey, Martin is a four-year-old, after all) but fewer tantrums. I’m not going to say Martin’s recovery is back on track. I’m not even going to say we are where we were a month ago, when I already was unhappy with his progress.

I will say that, I hope, the ship is turning again.

So why recommence blogging now?

Because I have no excuse not to. Finding My Kid comes with an honesty pledge. Posting reports only when recovery is proceeding apace—well, that’s just not honest.

See you soon.

[Addendum: If you’re taking the time to read Finding My Kid, you probably already saw the piece in this morning’s New York Times about the the links between autism and immune disorders. I’m always happy when the mainstream press edges toward acknowledging that autism is medical and should be treated as such.]