Teen Autism

The scene: A warm, early fall evening. A party is being held at a residential home. Guests are arriving, hugging, greeting each other warmly. They appear to be extended family and close friends. Over a dozen of them mill around the entry way as the last one arrives, an older woman with short curly brown hair. She appears to be about ninety years old, shrunken a bit by mild osteoporosis. She is carrying bags with food and gifts, and a woman in her thirties greets her with a hug, says, “Hi, Grandma,” and takes the bags from her. As they walk into the kitchen with the other guests, a gangly teenage boy enters the room.

Teenage boy says in loud voice: She looks more and more like a Hobbit.

Those near the boy quietly laugh while the older woman is distracted greeted by someone new. The woman in her thirties stifles a guffaw and briefly wonders how the rest of the evening will go.

At some point in the last couple of years, Nigel, like another skillful boy his age, learned to make toast. He has this routine of pre-slicing the butter so that it has softened by the time the toast pops up, placing the thin pats on the toast, waiting 30 seconds and then spreading them.  Then he actually wraps up the bread and butter and puts them away. It’s one of the things he does perfectly. And until last week, it was the only thing he could cook. Not anymore!

Last week I came home from work (I usually work from home so that I can homeschool him, but I go into the office on Fridays), and I could tell by the smell that something had been cooked. And not just toast. I put my stuff down and called out, “Nigel?” “Hi, Mom,” he answered from the living room. “How was your day?” I calmly asked. “Fine.” Did I really think I would get more than that? “Did you do your schoolwork?” “Yes,” he said, keeping his eyes on the TV.

“What did you cook?” I asked.

“I made grilled cheese.”

I surveyed the kitchen and noticed that my 12-inch risotto pan was out on the stove with a spatula inside of it (and the remnants of browned butter). The cheese, bread, and butter had all been put away. “Wow,” I said supportively. “How did it turn out?”

“Fine.”

“How did you know how to cook it?”

“From watching you.”

Thus my son proves that, once in a while, he does pay attention. And, more importantly, that he can cook on a gas stove without blowing up the house! Without burning anything! I am so proud. Emeril, watch out.

Parties are a bit of a conundrum for the extroverted autistic individual. Of course, I am not extroverted and I am not autistic, so this analysis is based on my (slightly biased) observations as the mother of such. Being extroverted, Nigel craves the fun social interaction of a party, especially when the party-goers include family and friends who know him and love him. But being autistic, he often needs relief from the very social interaction he so craves. And as a verbal autistic, he often finds that the topics he chooses to discuss can cause confusion or amusement (at his expense). Sometimes he unwittingly says something downright inappropriate or resorts to movie echolalia. It’s tough needing to work so hard at something that’s supposed to be fun.

I watch him at a party at our house. Nigel’s working the room, showing each person one by one his self-designed Lego mini-figure of JFK, discussing his theories on the assassination, and even thinking to ask those over the age of 45 if they remembered the day that it happened. He is trying to make connections with people the only way he knows how - talking about his interests and asking for others’ opinions. He would do this all night if he could. But after a while, the din of a party will get to him, and he removes himself for a moment to take a break. If he doesn’t, he will become over-stimulated and could have a meltdown. It’s happened before. He knows this about himself, but sometimes I need to remind him. This time, he does it on his own. And then he’s right back out in the thick of things. Back for more.

I, meanwhile, hang back as much as possible at a party. This is especially difficult to do when it is being held at my house. So, I have devised a method of getting as much ready as possible before the guests arrive, making sure all the refreshments are accessible, and then I sit at the far end of my kitchen counter, visible if anyone needs me for anything and near enough to throw out a comment or two should the spirit move me, but removed a bit from the action. Unlike my son, who is making the rounds with his homemade spear from 10,000 BC and a Peruvian Chullo hat on his head that my father brought back for him as a souvenir from a recent trip. Later, guests will be wowed by his Terminator sunglasses, floating pumice rock, and knowledge of space exploration history. He is in his element, and I am impressed and proud.

And then Nigel gets a little carried away, a little cocky, perhaps. Maybe he’s thinking, “I’m working this party good. Who says I need a social skills class? I’ve got it under control.” He notices Mom sitting a little close to her boyfriend (who was just introduced to all the relatives tonight). Close enough to tease her about it. And then something flies out of his mouth in his loud voice. Something that brings the party to a grinding halt.

Nigel:  Mom, you’re sitting too close to his crotch.

Me: Nigel!

Nigel: That’s okay, because I want to have a baby brother. I want you to have another baby.

Me (about ready to pass out, not sure if I have the strength or wit to manage damage control): Shh! Quiet!

Note to self: Time for a little talk about FILTERS!

When Nigel was about six and seven and using some spontaneous speech, he would tell me when he wasn’t comfortable with a situation. “All done rafting,” he said when I took him rafting on a mild part of a local river. “All done doctor,” “All done wash face,” and “All done vacuum” were heard frequently, or just “All done” between hiccupping sobs when something really upset him. It is in this spirit that I attended his IEP meeting today.

I know they mean well, the IEP team. Of course they do. One of them has known and worked with Nigel for ten years. But when I tell them the poignant story about Nigel doing art therapy in his yearbook, drawing ape faces on all the faces of the kids who had bullied him at that school, and the IEP team tells me that “a lot” of it was Nigel’s “perception” that the kids were bullying him, it makes me want to scream. It makes me want to knock a few skulls, okay? And then they suggest that maybe in a couple of months Nigel might be able to come back part-time (since I am currently homeschooling him). So I try to diplomatically reply, “Nigel really does not want to set foot in this school again. It’ll be all I can do to get him to agree to come to the once-a-week social skills class.”

IEP meetings tend to be the bane of every special needs parent’s existence. Until just a few years ago, I had two kids on IEPs. I thought I was tough. I thought I could do an IEP in my sleep. Seven years ago, my children’s father moved 700 miles away, and so I have attended these IEP meetings alone. And no matter what, no matter how many of these I have attended in the last eleven years, I still feel just as vulnerable. I still feel myself on the verge of tears, trying to hold it together, trying to convey to them No, it WASN’T just Nigel’s PERCEPTION that he was being bullied. How could they say that to me? After all that my child has been through? After all the calls they made to me at work, telling me I had to pick him up because of some behavioral issue they couldn’t handle. Because the constant bullying had driven him to such an agitated state that he could not even function. He could not make it through the day. It was not just his “perception.” That much I knew, as I breathed in sharply and felt my heart rate increase and my blood race through my veins at 8:15 this morning. I just looked at the person who said it. And then I looked away.

After that, we discussed his IEP goals, we talked about the social skills class, they asked how he was doing (much better now that he doesn’t perceive himself to be bullied anymore, thank you!), and they provided some math and writing materials that will be helpful for homeschooling. We discussed the benchmark testing he will need to do in the spring. We touched on options for high school next year.  We signed the papers. Said Thank you for coming. Went through the motions.

But at the end of the hour, as I walked out to my car, I realized that even though I had been upset by someone’s insensitive remark, my mantra pulled me through. “In an hour this will be over, and Nigel’s needs will be met.” This is what I say to myself before every IEP meeting. And somehow, no matter what happens, it works. All done IEP.

Like many families with autism, we start planning for Halloween early. When Nigel was younger, it was to prepare him for the sensory issues that would come up. Eight years ago, the Halloween that he was six, while we carved pumpkins I played a cassette tape of “spooky” sounds: wind blowing, doors creaking, chains dragging, and an occasional howl or scream. Nigel was very disturbed by the tape, so I shut it off so that he could join us with the pumpkin carving. For the next hour, even though the music had remained off, Nigel would say every few minutes, “Music is off. Music is finished. No more music.” We didn’t hear much spontaneous speech from him in those days, but he was really motivated to tell me how he felt about that tape. Every time he said it, I assured him in a calm voice, “That’s right, no more music,” but he continued to make his statements until we were completely finished carving the pumpkins. (I realized that maybe because I left the tape player in the kitchen with us that he was afraid that the music would start again; I should have put it away, out of sight.) The following year, when Nigel was seven, I mentioned getting pumpkins to carve for Halloween, and the first thing out of his mouth was “And we will not play the Halloween music.” (His sentence structure improved greatly that year.) Then he said it a few more times that afternoon, and we hadn’t even bought the pumpkins yet.

But in recent years, the reason we start planning for Halloween early is because we love it so much, especially Nigel. We have many decorations to put up - both inside and outside, costumes to piece together, a party to plan (Nigel’s birthday is October 27), and movies to watch. Our all-time favorite is Disney’s The Legend of Sleepy Hollow, and we try to watch it only in October. Nigel couldn’t wait any longer and had it on the other day. I walked past him as he watched it in the living room, and he commented, “Brom Bones is a bully. He is an angry DNA strand.”

 I told him that was a good way to put it.

Then a few minutes later, after the scene in which Brom Bones sings his spooky song at the end of the party, Nigel said, “I remember when those kinds of sounds scared me. They really gave me the heebie-jeebies - when I was a little kid. But I’m not afraid anymore. You know that music you played while we used to carve pumpkins? I don’t mind it now. Because I’m a little older.”

Halloween? Scary? What scares me is Nigel’s memory.

The following uncensored conversation took place in our dining room tonight:

Nigel (seated at table): I don’t want hot dogs tonight. I want to choose what I want for dinner.

Aidan (seated at table): What’s with the whole wheat buns? You know I hate these.

Me (a few feet away in the kitchen): I have work to do tonight, so I made something quick for dinner. [I start grating cheese on the nachos I am throwing together making for myself. The boys are silent for a few minutes as they eat.]

Aidan: Stop staring at me!

Nigel (matter-of-factly): I’m going to say something to you. I’m making eye contact.

Aidan: Well you don’t have to look at me!

Nigel: I’m going to build a time machine and go back in time to stop JFK from being assassinated.

Aidan: Time machines don’t exist.

Nigel: I’m going to invent one.

Aidan: It won’t work.

Nigel: I’ll go back to November 22, 1963 . . .

Aidan: I don’t even care, Nigel.

Nigel:  . . . and I will save him.

Aidan: Stop staring at me!

Nigel: I’m making eye contact because I’m talking to you. It’s a social skill.

Me: Aidan, if he’s talking to you, it’s okay for him to look at you.

Aidan: Well, it’s rude! [He stands up and walks over to the kitchen counter where he deposits his dinner plate with the untouched wheat buns still on it and goes to his room. Nigel, meanwhile, continues laying out his plans for thwarting the JFK assassination.]

I take my nachos out of the oven and sit down next to Nigel, who has eaten his whole wheat buns. He tells me his ideas, like suggesting to JFK that he use a “decoy” in the car. I suggest having him re-route the motorcade. “That would make the assassins suspicious, Mom.” I suggest that an inflatable President in the car would as well. “It could be mechanized so it would wave.” All this time he is making perfectly appropriate eye contact with me. He is conversing. And I’m trying not to dwell on the fact that my other son stormed out of the room (thanks, puberty) yelling about the very thing that Nigel has so diligently been trying to accomplish.

Someday, we will all sit around this table at the same time, all with the same food, and we will converse, and we will not have accusations of staring and rudeness flying around. We will have mastered eye contact. And dinner. It will probably happen right around the time that Nigel invents his time machine.

The calendar is sacrosanct to Nigel. It helps him to organize the vague concept of time, helps him to mentally prepare for upcoming events, and it even helps him to decide what to wear. He takes the concept of seasons very seriously and dresses according to the calendar, not the weather. Spring means short-sleeved shirts, even if it’s still snowing. If we’re having a really hot day in May and I suggest to him to wear shorts, he maintains, “It’s not summer yet.” Summer means shorts, no matter what the forecast. But no shorts before it’s officially summer. And by God, no pants before fall.

This morning as we were beginning homeschool, it was a bit chilly in the house, so I put on jeans and a sweatshirt. I suggested to Nigel that he might be more comfortable in pants rather than the shorts he had slept in. His reply was automatic. “It’s not fall yet.” I jumped up and ran to the calendar.

“But it IS fall!” I said, gesturing wildly to the calendar. “Today is the first day of fall! It’s printed right on the calendar!” The thought occurred to me that I was enjoying this just a little too much.

Nigel got up off the couch and came over to check. His eyes got a little wide when he looked at the calendar, then quickly narrowed. “Well, I’m fine,” he said, not looking at me. “I’m warm enough. I don’t need pants. I’m keeping the shorts,” and he marched back over to the couch and sat down.

I don’t know which shocked me more - his nonchalant, rebellious response or the fact that it really was the first day of fall, and it just so happened that I could point it out to him on a day that I suggested that he wear pants. I admit I had a little fun with that. But I’m glad that his effort to rebel against my suggestion has made him less rigid about adhering to his self-imposed seasonal dress code. This is definitely a step in the right direction, an openness to change. Never mind the emerging need for rebellion! We’ll just ignore that issue for now. After all, a little flexibility goes a long way - for both of us.

I have often said that I have a gray hair on my head for each time the school called me about some behavioral issue, each IEP meeting, and each public debacle we have survived. But I have more gray hairs that were caused by my son getting lost than by everything else combined.

Nigel is a wanderer. Up until he was about seven I had to have a lock high up on the front door or he would just run out and take off down the street. I wondered how I would handle it when he got older and could reach the lock. Implant one of those tracking devices? He was a runner, and it worried me. But something happened when he started to talk. He seemed to have less of an inclination to want to escape, and saying, “Stay in the house” was something he could understand. I felt like I could breathe a little bit more.

But the wandering nature is inherent. Whenever we are away from home, his exploratory urge kicks in, and he takes off if I’m not constantly watching him. Sometimes, in recent years, he tells me where he is going, but the odds are that he will not still be there when I come to collect him. Something else will have caught his attention, and he will have moved on. And I will spend the next half an hour running around looking for him, wringing my hands, imagining someone taking him, considering notifying the police, and basically driving myself into near-hysteria.  And it just happened yesterday. Again.

We had gone to a large park in a nearby city where an international fair was being held with lots of booths, exhibits, musicians, dancers, and food and craft purveyors. Nigel informed me that he wanted to go to the playground. I said okay, later wishing I had added, “and wait there for me.” After about ten minutes, we made our way toward the playground, and as we neared it, I glanced around for Nigel. I saw him scaling a mini climbing wall and started walking in that direction, briefly looking at some traditional Mexican dancers off to the side.  A moment later I reached the climbing wall, and there was no sign of Nigel. I went around the back of it. Not there. I looked at every playground feature. No Nigel.  Not again! I wanted to yell. How does he continue to do this to me?! He was just here!

I looked at the surrounding area, up in trees, around bushes (in case he had followed a bird or squirrel), all around. No sign of him. I informed the rest of our party (Aidan and my boyfriend) that Nigel had taken off, and they joined in the search. We walked through all the booths, went beyond the playground where there was an inflatable jumping/ball-pit thing attracting lots of kids, and even checked the belly dancing show going on. No Nigel. Then I retraced our steps back to the band we watched when we first arrived. Then I went back to the playground. I ran into my boyfriend and he suggested notifying the police. I said I wanted to make one more sweep first. I went beyond the playground, past the inflatable jumping/ball pit thing, past the belly dancing, and there, there, around the other side of all of that, was a fire engine. I saw Nigel’s head in the side window of the fire engine. He was seated with a bunch of little kids less than half his age, smiling and excited to be sitting in a fire engine. Oh, my son.

So many times have I felt this emotion without a name. It is a combination of intense relief, but also frustration, a little anger, and exasperation. The relief, of course, overpowers everything else. But how many times must we go through this? How many times must Aidan help look for his older brother? How many times must our plans be disrupted? How many times must I fear that he’s been taken? It is still so hard to bear, that sense of dread. The hysterical fear that he has been taken.

And yet, somehow I bear it. I must and I do. I say to myself when I find him, He’s okay, and that’s all that matters. And I admonish him for not staying where he said he’d be, and he apologizes, and we go on our not-as-merry way. And I think some more about implanting a tracking device in him. Or getting walkie-talkies. That is, if his could be strapped on to him somehow. Otherwise, I’d have a lost son and a lost walkie-talkie. Not to mention more gray hair.

This astounding book was written by Tito Rajarshi Mukhopadhyay, a non-verbal autistic boy whose mother taught him to write at the age of five. He wrote The Mind Tree between the ages of eight and eleven, and it is nothing short of amazing.

The first half of the book is a detailed autobiographical account from age two to eleven. Tito writes in the first person point of view, but uses the third person when referring to his younger self (for instance, “It was a worse show when he was three and a half years old.”) He also describes the thoughts and feelings of his parents in many situations, exhibiting a surprisingly advanced theory of mind. One of the delights of this book is Tito’s insight and his ability to explain some of his autistic behavior, such as analyzing why he spins. He says that his body felt “scattered and it was difficult to collect it together. He saw himself as a hand or as a leg and would turn himself around to assemble his parts to a whole.” And “He got the idea of spinning from the fan as he saw that its blades were otherwise separate joined together to a complete circle, when they turned in speed.” Tito also describes the “distorted . . . meaningless babblings” that he made, and suggests to “guardians” of other autistics that they discourage those sounds, claiming, “Being mute is better than distortion.” Later, he tells about how his mother helped him to “find” his voice by physically forcing it out of him via pushing on his back as he attempted to verbalize sounds. I found all of Tito’s detailed descriptions of his childhood to be intensely fascinating.

Equally wonderful are the remaining parts of the book, including a section of essays written about his interpretations of color and how they manifest themselves in his autistic mind. Tito also writes beautifully crafted, evocative poetry, such as “All the world was a busy place, And I was an idle kind, Disqualified in the human race, A different form of mind.” We readers are also treated to the lovely imagery of his short story called “The Mind Tree,” which is a touching tale told from the point of view of a tree.  Tito is truly a gifted writer.

This book is quite a find. I stumbled upon it in a bookstore a few years ago, and I am drawn in each time I read it. Tito’s message of hope is evident in every word he writes, but especially in the ending to his first biographical section, which he wrote at age eight: “One day I dream that we can grow in a matured society where nobody would be ‘normal or abnormal’ but just human beings, accepting any other human being - ready to grow together.” His words certainly prove the maxim that not being able to talk does not mean the same as not having anything to say.

 Nigel: Can eighth-graders have dates?

Me: What did you have in mind?

Nigel: Stephanie.

Me: No; what did you have in mind for what you wanted to do for the date?

Nigel: A movie date. But I have to decide what movie.

Me: Maybe you should let your date decide.

Nigel, eyes wide, smiling, high-fives me: Genius! I can learn about dating from you!

Me: I think that’s an excellent idea. Many parents don’t feel comfortable with their kids dating until high school, so you can spend the next year learning about dating, and then you’ll be ready.

Nigel: Well, I have another idea. [Leaves my office, runs down the hall to his room, returns in a moment brandishing a 2 x 3 school photo from last year, which was taken without my knowledge that it was Picture Day, and he had left the house that morning in a dirty old T-shirt that said "Baseball" across the front.]Next time I talk to Stephanie on the sidewalk, I can give this to her to show her parents so that they can have a visualization of me.  

Me: Well, they’d probably want to meet you first, anyway. And me [the mother who lets her son have school pictures taken in a ratty T-shirt]. But let’s wait until high school, okay? I’m sure Stephanie’s parents would feel better about that, too.

Nigel: But what if they don’t?

Me: We’ll cross that bridge when we come to it.

Nigel: You mean like in The Emperor’s New Groove?

Me: Yes. With sharp rocks at the bottom.

Nigel: Uh, Mom, the scene with that line was when they were going over the waterfall, not the bridge.

Me: Oh. Right.