Teen Autism

I’ve reached four summits this summer: Shasta, Thielsen, Wizard Island, and Lassen. I definitely felt a need to stretch my legs for various reasons. But my handy desk dictionary lists another definition for summit: “a meeting among heads of state.” These meetings are often referred to as summit talks, and I just had one a few days ago. Except in our family they’re now called “sleeping bag talks.”

I think of my sons as heads of states. They are the heads of themselves, and so I need to check in with them every now and then, to regroup, and to just talk. I used to have lofty ideas of holding monthly “family meetings” about what was going on in our lives, what we need to work on, what we’d like to do, etc. Of course, nothing that structured could actually materialize. If I were to walk into their rooms on a Sunday afternoon (which my delusional self always thought would be a good time for a talk) and say, “Hey, guys, let’s have a family meeting!” they would be all, Are you serious? That’s so Brady Bunch, Mom. No, they’d be much too busy building Lego/playing Halo/Googling Everything. And so, I have to sneak in my family summit talks. I’ve learned to strategize.

Take our recent camping trip, for example. What else do you do in an 8 x 9 tent with your sons on either side of you and one of them can’t sleep because you forgot to give him his medication until late in the afternoon and it’s keeping him up? That’s right, you talk. When autistic/ND kids want to talk, you go with it. Carpe diem.

I can’t remember when I’ve had more fun talking with my boys! Nigel started off with a discussion about time travel, influenced by having watched Back to the Future for probably the fifty-eighth time. But, unlike his usual one-sided talk about how he was going to make his own time machine and what he would do with it, he wanted to converse. He asked both Aidan and me what we would do if we had a time machine. After talking about famous people we wanted to meet (Abraham Lincoln and Charles Dickens), and then talking about all the presidents who were assassinated and possible reasons why, I came up with the suggestion of going back a hundred years and buying stock in Coca Cola.  The boys yelled “Genius!” and high-fived me in the dark. Then we talked about what we would do with the money. I must admit that, aside from saying we’d use some of the money to help out friends and family, we’re not the most altruistic bunch. Aidan wanted to start his own company (now it was my turn to high-five him), Nigel wanted a room full of Lego (which, in my opinion, he already has), and I wanted to travel more and be able to take the boys with me.

And after a while, Aidan fell asleep, and then Nigel turned to me, as if he had been waiting, and asked, “When did you first see signs that I had autism?” And I told him that when he was about two and a half I realized that he wasn’t trying to talk or interact, and that by the time he was three, after some evaluations by doctors and therapists, it was determined that he had autism. I couldn’t discuss - yet - the complexities of his sensory issues, the way he screamed and writhed on the floor of grocery stores and restaurants, not because he was having a tantrum, but because someone had turned on an electric coffee grinder. I couldn’t tell him - yet - about how he lined up his toy cars along the back of the couch and laid his head to one side and stared at them while he sucked his fingers instead of driving them around on the floor making engine noises. I don’t know if he’s ready to hear about all that yet. But I knew that he could understand the not-talking part. As soon as I mentioned it, he said, “Probably I was just taking my time.”

And since it was dark, I did not wipe away the tears streaming down the sides of my head. I said, “Yes, Nigel, I’m sure you were. And I’m glad that you learned to talk. But if you didn’t, that would be okay, too.”

And then he said, “Mom? With that money we get from time traveling, how about if we give some of it to other kids who have autism so they can have speech therapy to learn to talk?”

I hugged him and told him we could certainly do that.

Next time we go camping, I better bring a whole box of tissues.

Nigel: I was in the barrel today . . .

I spoke to Nigel a few days ago, and it was one of the best phone conversations I’ve ever had with him.  As I’ve written previously, phone conversations with Nigel are usually one-sided, compounded by the fact that there is often a movie or TV show on in the background that is distracting him. But this time, on his own, he took the phone outside so that he wouldn’t be distracted while talking to me. I was so impressed that he did that on his own! I guess he really wanted to talk to me! Most of the time I have to drag information out of him, but this time he volunteered stories about his exciting time at the beach, even though his voice was characteristically stoic.

Nigel: The wave was all around me.

Me: Were you boogie-boarding?

Nigel: I was body-surfing.

Me: How long were you in the barrel?

Nigel: Just a few seconds. Then the wave collapsed.

Me: Was it cool inside the barrel?

Nigel: Yeah. I liked it.

My sons, who have been visiting their father in LA for several weeks, will return in a week, and I plan on taking them camping soon. We’ve camped a lot over the years, as a family and with Nigel’s Scout troop, and Nigel’s favorite part of camping, like most kids’, is eating s’mores.

A few years ago we camped at Yosemite, and a month or so before the trip, I started to show Nigel pictures of Yosemite and told him that we’d be camping there that summer. At the mention of camping, he asked, “Can we have s’mores?” And I said, “That’s a great idea! You’ll have to remind me before we go to Yosemite.” Nigel, after a few seconds, got a blank look on his face and said, “But I just did.”

I forgot that his mind interprets things so literally. He wouldn’t know the implication that the reminding should take place a day or two before the trip, so that I could buy and pack the ingredients. All I had said was “remind me before we go to Yosemite,” but I didn’t say when exactly.

It makes me wonder if he just accepts that the gooey treats are called s’mores in the same way that cake is called cake and candy is called candy. That’s just what they’re all called. I think he was about ten years old when he went through a why phase, similar to preschoolers asking why the sky is blue. Only, with Nigel, he would ask why the color blue was called blue. Why is cereal called cereal? Why is that a tiger? After many of these nomenclature origin-type of questions, I would reply (slightly exasperated), “We don’t ask why; that’s just what they’re called.” I often wonder if he really wanted to know the meaning of the word, or if he wanted to know the origin of the word, or if he was just asking his “why” questions because he discovered that if he asked a question, the other person would respond to him. It was the next step on his quest to connect with people. He just didn’t know how to structure the questions. Except for “Can we have s’mores?” He mastered that question for sure.

Being a movie lover, Nigel considers himself lucky to have a father and stepmother who work in the movie industry. Through his father, he met Nicolas Cage (Raising Arizona and National Treasure get played a lot in our house) and watched him do an impromptu puppet show.  Nigel said he was very funny and nice.

Nigel has also been a long-time fan of Robin Williams. In fact, it was Mr. Williams’ performance as Genie in Aladdin that encouraged Nigel’s beginning communication through echolalia. Nigel went on to enjoy other Robin Williams movies, such as Popeye, Flubber, Hook, Toys, Mrs. Doubtfire, Robots, and Night at the Museum, which he has a poster of in his room. His all-time favorite, however, is Jumanji. So when his stepmother came home from work last week and announced that she was working on a film starring Robin Williams, Nigel, eyes wide, said, “Tell him I’m his biggest fan.” She did, and Mr. Williams, who has probably heard that a few times before, quipped, “Oh, did he take a poll?” and proceeded to personally autograph Nigel’s Jumanji DVD. When his stepmother brought it home for him, his dad said that Nigel’s eyes actually watered, and when I spoke to him about it on the phone today and asked Nigel how he felt to receive the autograph, he immediately said, “Ecstatic!” To me, that’s the best part about movies: helping autistic kids to try to communicate, and later, to identify their emotions. How great is that?

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.

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.   

Yesterday I wrote about non-verbal communication and Nigel’s development in that area. I ended that post with an anecdote about his emerging ability to read others’ non-verbal communication so that he would not say inappropriate things. On the flip-side of that, I also want to discuss the appropriate things that need to be said, because he often has just as much trouble with those.

“I’m sorry.” Nigel has just recently begun to comprehend the importance of this phrase. I’m sure there were many times that I tried to get him to say it, to parrot it, when he was younger, but the time that I remember the most was when he was 6 and we had some friends’ children visiting at our home for a barbeque, and he was running around chasing them. In retrospect, I should have known that he was too ‘escalated,’ too wound-up to register anything that I said to him. But I was still learning about autism and how it affected him. So he was being chased by a 3-year-old, laughing, probably enjoying the interaction because he always craved it, and Nigel ran into his bedroom and shut the door quickly, not realizing that the 3-year-old’s fingers were already in the door frame. I immediately took the little boy into the kitchen to have someone soak his hand in cold water, and then I went to tell Nigel that he needed to say he was sorry. Again, I was still learning about how autism affected him and I didn’t realize that he couldn’t say sorry because he could not comprehend the word. So when I told him to say it, he just said, “No sorry, no sorry.” I demanded that he say it or he would have to stay in his room the rest of the day. He repeated his “No sorry” mantra and then began screaming.

Two years later, a neighborhood girl verbally provoked him beyong his level of coping, and he allegedly “punched” her. The girl ran to tell me what Nigel had supposedly done, so I took him inside and told him that if someone is bothering him or making him mad, he should come and tell me instead of doing something to them that would get him in trouble. Later, he said he wanted to say he was sorry to her, so I walked him to the driveway and he went up to her and did it on his own. Then, while walking back home, he asked me, “Why do we say ’sorry’?” He knew what he was supposed to do socially, but he still didn’t understand why. I think that now, at 13, he understands why, because he says it readily and remembers to do it on his own.

“Thank you,” however, he often forgets to say. Often, as in on a daily basis. I know that he understands the reason for saying it, but he just doesn’t do it unless prompted, much to my dismay. I could understand having to prompt him when he was younger, but he’s now a highly verbal 13-year-old! I guess I have to just keep doing what I’m doing, keep up with the repetition, and hope that one of these years he’ll get it.

Greetings are another gray area for him, and always have been. He often greets a household guest by walking up to them and showing them his latest Lego creation. I have to remind him, “Say ‘Hi, Grandma’ and give her a hug!” and then he does. He has to be coached on the phone as well.

I think the reason why these words and phrases are hard for him is because they are vague. They’re not nouns or adjectives or verbs (with the exception of thanking). There’s nothing to visualize. And for someone who is a visual learner, that makes it difficult. For someone who’s also trying to learn, at the same time, how to be socially appropriate, it’s a lot to absorb and apply. He’s mastered sorry, finally. I still have hope for thank you and hello.

Language acquisition is, of course, not just about learning to talk. Non-verbal communication is another confusing realm that autistic people must enter if they wish to interact appropriately.

Initially, Nigel’s non-verbal communication skills were limited to how he could make his needs known non-verbally, since he was not functionally verbal until about age 7. He could talk prior to that age, but most of the words that he spoke were echolalic. If he wanted me to get him something out of the refrigerator, he would take hold of my hand and lead me to the refrigerator and put my hand on the door handle. I would have to guess what he wanted, and a wrong guess would be met with a scream. This was the extent of his non-verbal communication at the time.

He progressed to using PECS, both for his expressive and receptive communication, which was a blessing for both of us, reducing the screaming at least while at home (in public, with his extreme sensory issues, the screaming continued). Once he started uttering one-word need-based requests, his use of PECS at home decreased, and then he moved on to two- and three-word combinations. At that point, the concept of non-verbal communication changed from expressive to receptive.

He started making eye contact. It was fleeting, of course, at first, and only reserved for family members and the most familiar of therapists, but it was there. He started to notice and interpret facial expressions, mostly limited to smiles, but gradually he could interpret the more obvious manifestations of sadness and anger. His favorite one to interpret, still to this day, is tiredness with its unmistakable yawn. “Go sleep?” he would say at age 6. Now, at 13, we hear the beautifully correct and appropriate, “Are you tired?” and even “Why are you putting your head on the desk?”

Nigel’s greatest accomplishment with interpreting non-verbal communication still astounds me, and always will. It happened about six months ago, when his NT friend Riley was at our house for a sleepover. Earlier that week, Nigel had seen me taking my daily birth control pill and asked what it was. I told him in simple terms that it prevented babies from forming in my uterus. Riley’s mother had had a baby a year and a half ago, and now Riley was telling us that his mother was going to have another baby. My sixth sense kicked in, or mother’s intuition, and I knew that the wheels were quickly turning in Nigel’s head. I was seated at the other end of the dinner table from him, and I looked at him fiercely, willing him to look at my wide eyes telling him Don’t say it! Don’t say what you’re going to say! And he started to say, “She should’ve –” and abruptly stopped as soon as he saw my face. It was the first time he caught himself before making an inappropriate comment because he had successfully interpreted non-verbal communication! I was so relieved, and equally amazed. Later I talked with him about the fact that I was glad he stopped himself from saying, “She should’ve taken birth control pills!” I told him that would not have been a polite thing to say. “But I don’t like polite,” he said, which is what he says when he doesn’t understand something’s purpose. At least if he can continue to interpret non-verbal communication (and not just his mother’s), he stands a chance of learning what’s not polite, and avoiding it.

Nigel’s language development has always intrigued me. I have written previously about his use of echolalia to communicate and how it progressed through different stages over the years (stages that I identified and labeled on my own: please note that they are not “official”). The teachers and therapists who have worked with him at various times, especially in the early years, but even now, have often commented on his ability to take lines from videos and use them within the context of a situation.

Nigel has always loved the Disney movies, especially the animated ones, but at the age of five he began watching some of the live-action films. He loved The Swiss Family Robinson, and still does. One day, his behavioral therapist, unaware that he had been watching that movie at home, told me that when Nigel got angry at her he had said, “It’s my gun, you’ve got no right to take it!” Imagine the awkwardness as I tried to explain to her that he had taken that line from a movie. I wonder if she was thinking that I routinely left guns laying around the house and reprimanded my children when they picked one up. The movie scene in question was when the older brother took the younger brother’s gun away from him, and the younger brother was angry about it. Nigel said the line as a way to indicate that he was angry about being told to do something he didn’t want to do. When I explained the movie scene to Nigel’s therapist, I could see the relief wash over her face. Then she said, ”I understand now! That’s part of why we call him ‘Mr. Association,’ because he’s so good at associating things like that.” 

Quoting lines from videos is no longer Nigel’s primary means of communication, although he still likes to do it occasionally. He also likes to take words or phrases that he remembers from movies, TV shows, or something he picks up online, and try to use them appropriately. Sometimes he is successful with this, other times not. Today during homeschool, while working on subtracting mixed numbers, he did it seamlessly.

Nigel: I don’t want to do subtraction. It’s not really my bag.

Me: Cleaning cat vomit off the carpet is not really my bag, but it still needs to be done.

I think he got the picture.

There has been so much research done on music as autism therapy that I couldn’t possibly address the multitude of positive effects from it in one post. What I will do here is discuss the effects that I have seen with Nigel, including increased verbal skills, better sensory integration, and calming influences.

According to the Autism Research Institute, “Autistic children have also made enormous strides in eliminating their monotonic speech by singing songs composed to match the rhythm, stress, flow and inflection of the sentence followed by a gradual fading of the musical cues.” In his early years, Nigel watched a ton of Disney videos from which he learned to use echolalia as a means to communicate. These Disney videos also had songs that he would memorize that taught him rhythm and voice inflection, and from them he gradually gained the verbal skill of using his own words.

As he got older, Nigel began to pay more attention to the music I listen to, which is a mix of classic rock, alternative, techno/dance, world, celtic, and more. I noticed that the categories that feature harder, faster beats (some rock and techno) seemed to help with his sensory integration. He learned how to filter sounds that previously had caused him to go into sensory overload, like air hand driers in public restrooms and other loud, mechanical sounds. And now, he likes the music for its own sake; he rotates his favorite CDs on his own stereo (mostly movie soundtracks like Twister, Back to the Future, and Cars) and sings along.

When he wants to unwind and relax, he turns to some more of my music. I am happily employed by a company called New Earth Records, a spiritually conscious music label specializing in New Age, world, trance, healing music, and Osho meditations. Nigel enjoys the beat and different instruments (sitar and sarangi) of James Asher’s Tigers of the Raj, the relaxing trance rhythms of Cybertribe’s Immortality (Nigel says: “It relaxes away the stress of the day”), and the beautiful melody of Lisa Lynne’s harp on Love & Peace. When I put on Deuter’s Sun Spirit, Nigel commented how much he liked the cover (Van Gogh’s “Olive Trees”) and said that the music made him feel “like you’re in the Renaissance.” Another title of Deuter’s that I play is Earth Blue, which makes Nigel say, “I feel like I want to sleep.” For someone with occasional insomnia, that’s invaluable, as are all the benefits of listening to music.

I highly recommend playing music for an autistic child (and every child), not only as an effective therapeutic device, but also for the soothing value of it. Music adds to the quality of one’s environment and life in so many ways.