Teen Autism

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.

Most writers love to read. After all, reading was what prompted us to want to be writers - we had read something we enjoyed so much that we decided to try our hand at it. Reading can evoke deep emotion and provide a wonderful escape. One of my favorite quotes (by Virginia Woolf) concerns the love of reading:

“I have sometimes dreamt that when the day of judgment dawns . . . the Almighty will turn to Peter and will say . . . when He sees us coming with our books under our arms, ‘Look, these need no reward. We have nothing to give them. They have loved reading.’”

And so I was understandably ecstatic when my son, diagnosed with autism at age three, began reading six months later. I soon learned that it was called hyperlexia and that supposedly he did not comprehend what he read. But a lot of it he did comprehend. He started off by putting his wooden letter blocks together to form words (”w-o-l-f” when he wanted to watch Disney’s Peter and the Wolf) and “w-a-l-m-a-r-t” when a trip to Wal-Mart was mentioned). He would read the words printed on his PECS cue cards and respond accordingly. Then he progressed to reading words that his teachers, therapists, and I would write for him when PECS was not enough (”First finish work. Then play outside,” and “First dinner. Then more Lion King.”) Soon I noticed him reading Dr. Seuss and Disney books on the couch, and he was reading in his mind because I saw his eyes move across the pages. He was four. By the time he was six years old he was tested to be reading at fifth grade level, yet his speech was still largely echolalic.

I was just glad he was reading. Now, Nigel reads National Geographic issues cover to cover. (I walked into my office one night to find him with several issues spread out all over the floor and asked what he was doing. His response: “I’m just hanging out reading Nat Geos.” I love how he came up with the abbreviation himself.) He reads truckloads of books on science, history, wars, different cultures, natural disasters - many types of non-fiction. Alas, very little fiction, which is my favorite.

The only fiction Nigel will read is a book that’s been turned into a movie (like Jumanji or The Secret of NIMH). He did read The Cricket in Times Square (if there’s a movie of that, he hasn’t seen it), but it had animals in it, and he loves animals. He wishes they could talk. (And clean out their own litter boxes.)

I wrote this post because I had noticed several incoming searches for “reading and autistic teens.”  What do they like to read? The bottom line is that it depends on the teen’s cognitive level and their individual interests. Some still like to read the books they read as young children for the comfort and familiarity they offer. Many autistic teens like books about animals, fiction or non-fiction. Some, like Nigel, love history, geography, and movies. Some might be more inclined towards math and computers. Some might even like to read instruction manuals or the backs of cereal boxes. If they’re reading, it’s all good.

Any kid who loves a movie character will probably want to write a fan letter, and Nigel is no different. After beginning with Tigger (”Dear Tigger, jumps note, Piglet and Pooh”), Nigel progressed in one year to write, at age seven, the following letter:

DEAR   PETER   PARKER

MAY    I    HAVE    THE   SPIDER-MAN    SUIT    PLEASE

YOU    CAN   VISIT   US   IN   OREGON

I   MISS   YOU   IN    NEW   YORK

YOUR   WEB   SHOOTERS   ARE   COOL

WHY   YOU   STOP   GREEN   GOBLIN

LOVE      NIGEL

He typed it on my computer one afternoon. I guess, not realizing that a sequel was in the works, Nigel figured that Peter Parker no longer needed the Spiderman suit now that the movie was filmed. And I guess Nigel thought that Green Goblin was pretty cool, too. Who can really know for sure what an autistic seven-year-old thinks? The number of words contained in this letter is far more than Nigel ever spoke at that age.  I remember being so glad that he had found a way to express himself, even if it was only about movies. At least they motivated him to write, and to communicate.

As I had written in a previous post, I believed that once Nigel learned to write, that would “liberate him to no end.” Last night I came across a description I wrote seven years ago about Nigel learning to write:

Near the end of the year, Nigel began printing his name. Just a month before, he refused to hold any writing utensil, as he had been doing since age three when we first tried to get him to scribble; he seemed to have an aversion to holding pens, pencils, crayons, and markers. But now, at six, he has begun. Being a bit of a perfectionist, he gets very frustrated with himself because he has trouble making the letter G, both big and small. But he perseveres, and now, just three months later, he writes full sentences, short “letters,” even. (”Dear mom, Mom get string cheese, Love mom” - I’ve tried to tell him that he needs to say “Love, Nigel” on his letters so that the people know they’re from him, but I guess he thinks, Why wouldn’t you know who it was from? I just handed this to you, so you must know it’s from ME.)

He has also started drawing for the first time, which is fabulous. The first things he drew were little cars with smiley faces. I will always remember how happy I was when he started writing and drawing. The first night he did, he came to me and asked me to “write a letter to Tigger.” I told him I was washing dishes and I would do it as soon as I was finished. A few minutes later, I turned around and there he was at the kitchen table, hunched over a piece of paper, writing diligently, struggling with the Gs in Tigger. I looked over his shoulder just as he was finishing, and saw that he had written, “Dear Tigger, jumps note, Piglet and Pooh.” He put it in an envelope because he wanted to mail it to him.

Since then, Nigel has been writing and drawing every day. He went through a sign-making phase. He put up signs all over the house saying things like, “Warning: Do not let mom out of the house” on the back door, “No children allowed” inside the front door of Aaron’s [his father's] house, “No smoking,” on Aaron’s closet door, “Reward: Do not let dogs out of the cage” on his and Aidan’s bedroom door, and several “Missing: Stuart Little” signs all over the living room when he couldn’t find his Stuart Little video. Currently, he has been drawing traffic lights and houses. He also recently drew an adult male lion and a lion cub, and when I asked him who it was, he said, “Simba and his dad.” I initially thought that Nigel’s writing and drawing would be a way to communicate his needs, but it has revealed more about his emotions and priorities than I ever would have imagined.

More from “Nigel At Six:”

We moved into a new house a few months ago. It’s on almost half an acre, with lots of trees and even a playhouse in the backyard. The boys really seem to like it; for the most part they’ve adjusted well to the change. The only difficulty Nigel’s had since we moved in happened about two months after we moved in when the landlord, without notifying us, had bark chips put in areas of the front yard as a landscaping element. I knew Nigel would initially have a problem with it, because it was new. I had just gotten home with the boys on a Saturday afternoon after they had spent the night at their father’s house. Nigel got out of the car and immediately began trampling the bark, shuffling and dragging his feet through it, sending it flying. Brian [my then-boyfriend] immediately started lecturing Nigel, not realizing that it was Nigel’s way of adjusting to something new. I tried to tell Brian that this was Nigel’s way of learning about something foreign (What is it? What is it doing there, when it wasn’t there the last time he was in the front yard?). I explained to Brian that Nigel’s anxiety level goes up when he doesn’t recognize something, especially in his own home. “Well, that doesn’t make it right for him to destroy something that somebody worked on all day,” Brian said, totally missing my point. Nigel could not understand that someone had spent time arranging the bark. He was just trying to assimilate it into his world the only way he knew how. I told Brian that probably tomorrow Nigel wouldn’t even touch the bark; it would no longer be foreign to him. (I was right.) The one thing Nigel could understand was that in dragging his feet through the bark, he had made a mess, and when I pointed that out to him, we got a broom and he helped sweep it up.

[Next I wrote about our experience with trying the GF/CF diet.]  . . . There may be supplements he can take to alleviate some of the symptoms (of autism), which of course I intend to look into as soon as I can. Sometimes I berate myself, thinking, why wait? Why not now, instead of writing this? Why not do everything I can to fight this? I don’t think I have an acceptable answer. There are many components of my answer. One part is because I’m so tired; I don’t want autism to run our lives (but if I just let it be, then it is running our lives, isn’t it? It might seem that way to some. But to me, when we’re at home, we function as a family at a near-normal level. Or at least, it feels nearly normal, and that’s good. It’s only in public that problems arise. So it’s almost easy to be comfortable with it in our daily lives). But mostly I don’t fight it because I seem to innately know that Nigel’s autism cannot be “cured,” at least not by current methods which seem to cure some types of autism. I know that Nigel will learn academically, and he will eventually learn about autism and how it affects him. In his daily life, he’ll work with it, and he will succeed on his own terms.

More development, more nostalgia:

Nigel turned six a month ago. Not an hour goes by that I don’t think about his disability. There are moments, yes, that I can just enjoy the life we do have, the accomplishments he has made, and for a moment convince myself that our lives are not defined by autism. I can usually find some time at home each day when I realize that we have all been functioning at our own version of normal, and everything is good. Even just for ten minutes.

But Nigel is learning and growing as I thought and hoped he would. I hope one day to converse with him on a level higher than “Would you like a sandwich or scrambled eggs for dinner?” But for now, the fact that he can answer me is wonderful. He rarely screams at home anymore.

This year Brian [my then-boyfriend] and I took the boys on their first camping trip. We went to the coast and got rained out, so we just drove until it stopped raining and ended up at a park/campground in Grants Pass. As we were unpacking the car, every minute or less we would hear the roar of some type of vehicle pass nearby. First I thought it might be low-flying planes, then I thought the campground was next to a freeway and that the noise was caused by trucks roaring by. But it was louder than that. The sound was invasive, jolting. Each time one would pass, Nigel would nearly go into convulsions of fear and sensory overload. This went on for about ten minutes, and I knew we would have to leave if it didn’t stop soon. I ran down a path through some thick bushes and came out on the banks of the Rogue River. About ten seconds later a speedboat roared by, followed by another. I went back and told Brian what was making the noise, and we figured it would be over soon. Apparently there was a race going on, called Boatnik. Brian thought the boys would like to go down to the river to see the boats, but I thought that would make it worse for them to be so close. I was wrong. As soon as Nigel saw what was making the noise, his fear was gone and he enjoyed watching the boats while covering his ears. He even joined Brian in cheering them on! His capacity to adjust to his disability truly amazes me.

Development sometimes seems so elusive and immeasurable. When you’re with your child every day, it is often difficult to see any development. For me, it becomes more apparent when Nigel returns after visiting his father for seven weeks every summer. It is then that I notice changes in development. Some are subtle, such as a slight increase in speech, and some are more obvious, such as being two inches taller. Every year Nigel progresses, whether it is obvious or not.

I keep a file (several, actually) of his school records, IEP reports, and my own writing describing his development over the years. I have been looking through the files this week and am enjoying reading about his development, marveling at how far he has come. This is an excerpt from ‘Nigel at Six:’

I had intended to start writing this sooner. Pictures are not enough to remember these early years. Videos help immensely, but they do not capture thoughts and dreams, concerns and hopes.

All people change and grow, but I think I will spend my entire life learning about Nigel. Who is this little boy? Part genius, part tough, all loving. He has been with Child Development Center for two years now, and I can communicate with him levels above how I did when he started. He is a wondrous person, a gentle soul. Trusting, yet fearful of new situations. I can’t explain to him why he needs to sit at the table in restaurants and stay near me in the grocery store. Of course, I must remind myself that it has gotten better. He understands more of what I tell him, but too often I don’t  think of what to tell him until it is too late. Last time we tried to eat in a restaurant, he went up to some other patrons at their table, got right in their faces and proclaimed, “Balto!” because he had watched that video earlier in the day.

He is starting to use pronouns now, usually at home where he is comfortable, although he confuses which one to use when, “I” for “you” and vice versa. We are still hearing nonsensical words, words he uses when he’s trying to imitate a line from a video and he doesn’t know what was actually said. For example, in The Lion King when Simba tells Zazu “Hurry!” in an urgent voice, because he needed help. Nigel thought it was said in an angry voice, so whenever he’s angry, he yells, “Urr-reee!” and has for about two years now. Or he would say, also in anger, “It’s my gun, you’ve got no right to take it!” from the Swiss Family Robinson. Fortunately that was short-lived. Another good one was from the Scooby-Doo video. When Aidan split his chin open, we had to go to the doctor for stitches, and the regular doctor had just moved to a new location. So we got to the new office and were just about to walk in the front door when Nigel stopped and said, “I don’t like it,” as Shaggy had said when they were about to go into a haunted house. Nigel had used the phrase in perfect context as a way to indicate his fear about a new situation.

He’s even come up with some phrases on his own, emerging spontaneous, non-echolalic speech, which is wonderful. When I got back from a three-day trip to Paris, he emptied my backpack and filled it with his own shoes and clothes, put it on and walked around the room saying, “Nigel go to Paris. Nigel is tripping [meaning, going on a trip].” He has learned in school to comment whenever someone participates by saying, “Good catching,” “Good throwing,” “Good drawing,” “Good sitting down,” and when he can’t describe something specifically, he says, “Good job in doing,” which I love.

And the boy who taught himself to read at three and a half is sounding out words he doesn’t even know. Yes, it’s hyperlexia, but at least he shows cognitive strength in that. Unfortunately, he seems to have difficulty with holding pens - even fat ones - and trying to write. He is very resistant. He loves to watch other people write, but he freaks out if I try to put my hand over his to get him to do it. It’s a shame, because I think that once he learns to write, that will liberate him to no end.   

I suppose this is what it means to be the parent of an autistic teen. I start thinking Wow, he’s been doing really well lately, functioning, talking, responding well to the medication, being more independent. This is great! And then Blam! The phone rings, or I go to pick him up from somewhere, and someone starts to tell me that it’s really not great, that there have been problems. And then I get that brick in my gut and go into apology mode and why me? mode and I just wonder how much more I can take of this.

I went to pick Nigel up yesterday afternoon after the Scout camping trip he had been on. It was Friday night, Saturday all day, Saturday night, and they came home Sunday morning. He’s done so much with his troop that I figured he’d be fine for two nights and one full day. It had been hot there, and he didn’t just withdraw, he got mean. He complained endlessly, he told his patient Scoutmaster that he wouldn’t help clean or do any of his duties unless he would be taken home. He made everyone miserable and acted inappropriately.

I think the problem is that he just doesn’t realize when his behavior is inappropriate. He can’t regulate himself very well. The autism makes him think of himself and so he doesn’t sensor his reaction to things. He doesn’t care what anyone thinks of his whining and complaining, or care that a 13-year-old shouldn’t act that way.

And so I try to tell him. Again. And again. But I think what will do me the most good is to realize that this is how it is. Just because he’s doing well for a few weeks unfortunately does not mean that we’re in the clear. I need to accept that there will always be setbacks. I try not to think of my apprehension about his behavior as he gets older. He wants to attend the local public high school in a little over a year. He wants to go to college. All I can do is hope that he will continue to mature, to develop. We’ll cross those bridges when we come to them.

In his quest for friendship, Nigel regularly requests sleep-overs. It took a while for him to accept the fact that he could only invite friends to spend the night at our house, as opposed to inviting himself to spend the night at friends’ houses. I think he now understands the way that works, after about three dozen reminders. So last weekend, he invited two brothers from one of the Scout families we know to spend the night, and I made some mental notes as I watched Nigel’s social development in action.

He spent most of the evening in echolalic mode, which worried me. He used echolalia as a tool to be social before he was functionally verbal, but we don’t usually see much of it these days. The exception to that is when he is stressed, which sometimes happens when he’s trying to make peers think that he’s just like them. What he was doing Friday night was not what I call stage 1 echolalia, which is parroting (repeating back what is said to him). He started off with that between the ages of 3 and 6, and moved on to what I call stage 2 echolalia, which is repeating random lines from videos he has watched. Stage 3 echolalia is repeating certain lines from videos and trying to fit them within the context of the situation. Stage 4 is taking those strategically used lines from videos and customizing them by inserting correct names and other details relevant to the situation. Nigel now mixes stage 4 with his own spontaneous speech on a daily basis. But occasionally, when stressed or unsure of himself socially, he reverts to stage 3 and even stage 2.

During dinner Friday night, he was so worked up that he was quoting random lines from the live-action Scooby-Doo movie. I think he was trying to make the kids laugh, because he could hear the movie in his head and it was making him laugh, and he was trying to share that with them. But by merely spouting the lines randomly, he only caused confusion for the boys. They were polite and accepting, but they didn’t know how to respond, and I could tell they were uncomfortable. So I had to poke my head in the room and try to steer the conversation to a different topic.

I aurally checked in a few minutes later, and Nigel was doing a little better. He had moved on to stage 3, and I overheard him say a line from Jurassic Park: “In 48 hours I’ll be accepting your apologies,” when his friend accidentally bumped him. By the time dinner was over, he was back to mostly employing his own speech, which I think occurred because the boys started talking about James Bond movies, which is Nigel’s Obsession of the Week. Aidan and the two guests were discussing the story about the painted girl in Goldfinger dying because her skin couldn’t breathe, and the fact that Mythbusters disproved it. (I smirked back in the kitchen and refrained from telling them about my college days, when a friend of mine did a photography project using models painted in all one color, and I was yellow. Suffocation was not a concern at that point.)

But the good part was that Nigel had calmed down enough to interact appropriately with his peers. How he was acting earlier made me think that he was probably like that at the middle school, and there was no adult around to moderate the conversation, so things just escalated to the point where an intolerant NT kid punched him in the face or told him to run laps around the field and laughed at him. It’s easy to see how he reverts to the stages of echolalia when he is over-socialized because it’s comfort behavior. It’s something that he knows. When some random kid at school is talking to him, he doesn’t know what to expect. So he starts playing a movie in his mind and starts verbalizing the lines that he’s hearing because he knows what comes next. And that is one of the reasons why mainstreaming won’t work right now. He still has a lot to figure out in the social realm. I certainly prompt him when I can, when I’m there, but most of it he’ll have to do on his own.

By nature, or by definition, most autistic people tend to be introverts. It just goes with the territory. But what happens when that is not the case? Is it even possible that a person can be autistic but also be extroverted? How? And wouldn’t that be the ultimate cruel irony? Someone who desperately wants to be social having a developmental issue that makes the very thing he wants be nearly insurmountable to achieve.

I truly believe that Nigel has struggled with this since toddlerhood, possibly even infancy. Long before he was verbal he would try, always unsuccessfully, to interact with his peers. He couldn’t talk, so he went up to them and laughed, only to be misinterpreted with disastrous results. He would try to interact with adults by going up to them and saying their license plate number. He wanted so badly to connect with people, but they were people in a world from which he so desperately needed relief. He couldn’t go into public places because he did not know how to filter all the sounds that bombarded him and caused him such agony. His sensory issues were so extreme that they - and his social issues - prevented him from being true to his social nature and his desire to be a social person.

So, Nigel evolved. He had to if he wanted to interact with people. Various therapies had a lot to do with his success, but I firmly believe that his drive to be social in the first place is what motivated him to keep trying to connect and caused him to respond to the therapy as well as he did. He somehow, over several years’ time, learned to filter out the sounds that prevented him from going into stores, restaurants, public restrooms, etc. He stretched his cognitive skills to not only repeat lines from videos he’d seen, but then he used certain lines and fit them within the context of a situation in order to express himself verbally. He wanted to communicate. It just took him several years to learn how.

I am an introvert. Had I been autistic, I probably would not have talked. I don’t think I would have cared. I enjoy being in my own head so much as it is that, were I autistic, I would most likely love to stay there. I certainly don’t mean to simplify the complexities of autism and the reasons why some autistic individuals learn to talk and some don’t. Nor do I mean to propose that some autistic people just choose not to talk because they are introverts.  But I can’t help but think that the way we are socially wired - introvert or extrovert - has to affect autistic individuals as well. I don’t think that autism would cancel out a person’s natural inclination to be social, if that’s in his or her personality. I see it every day with my son. He just has to try a lot harder than most people.