Teen Autism

The day starts off as such a beautiful, clear day - sunny and almost warm. I decide to ask Nigel to accompany me to the grocery store to pick out a different cereal in addition to what he usually has every morning. He agrees. We walk in the store, side by side, and head over to the organic produce section. “Where are the coconuts?” he asks. I tell him that they are probably in the regular fruit section and point him in the general direction.

He walks over by himself, and I watch. Not because I think I need to, but because, once again, I marvel at his ability to filter all the sensory input that used to be agonizing for him. The luxury of this - to me - never wears off. The sheer joy of it. It is comforting to see that he is happy, not distressed in the least. His gait is confident, purposeful. I look down and pick out some broccoli. In a moment I look up and see Nigel, fifty feet away from me, across produce stands and people and carts, and he is standing there looking at me, a big smile on his face - eye contact, even. He has found the coconuts. I smile at him, too, for so many reasons. He comes back over to me and asks if he can have a coconut so that he can make a replacement for one of his shell-cloppers from Monty Python and the Holy Grail. He likes to clip-clop his way through the house, acting out scenes from the movie. He made a pair of cloppers about a year ago, and one broke. Of course I will let him get a new coconut, but I ask how much they cost because I want him to be aware of things like that. He briskly walks back over to check. “Two dollars,” he says. “Is that okay?”  Sometimes he is so cute. I assure him that it’s fine, then suggest he go pick out his cereal. He returns a moment later with his completely appropriate, healthy choice (no, I’m not being sarcastic - he has learned not to bother asking for anything with refined sugar, after years of being turned down). He then asks if he can look at toys - not to buy, he assures me, just look. I tell him okay, but be back in five minutes.

He returns as I am unloading my cart at the check stand, exactly five minutes later, brandishing a small Lego kit that he has somehow not yet acquired. He tries to bargain. “I’ll have this instead of the coconut,” he says as he picks up the coconut to return it. I gently remind him that he promised he was only going to look at the toys and not buy any. A blank look crosses his face as he remembers. “But it has a crystal wand,” he says in a small voice. “Maybe some other time,” I say. “We’re not getting toys today.” He reluctantly says okay and goes to put the Lego back. And as I finish unloading my groceries, I marvel yet again at this child who has come so far, who, as a teen, is doing little things on his own. “Look, Ma - no hands” for us translates to “Look, Ma - no sensory issues.”  Or, “Look, Ma - no meltdown.” Of course, he doesn’t say that, but I’m thinking it. And his sensory issues are far from gone; he has just learned to filter them and cope with them. He still needs earplugs in movie theaters and often covers his ears, is a very picky eater, and exhibits some sensitivity to light and touch, but overall he does quite well now. He also knows when he needs to diplomatically settle for a coconut over Lego, and maybe, deep down he appreciates the subtle reminder that that was what he wanted in the first place.

We walk out to the car and the weather has drastically changed in the half hour that we had been in the store. The sky is dark gray and the snow is blowing at us horizontally.  ”It’s snowing!” Nigel exclaims with perfect inflection. We hurry out to the car and he stands by his door, waiting to be let in. I ask him to help me load the groceries and he complies. As I put in the last bag, I hope for a second that he has thought to put the empty cart in the stall without me asking him to, but he is back waiting to get in his door, and the cart is still next to me. There will be other teachable moments, when the sun is shining.

I put the cart away and run back to the car. We get in and Nigel pulls the coconut out from underneath his jacket. “At least I protected the coconut from this climate,” he says. I tell him that it looks like a perfect one for his project. I look at the windshield wipers flicking away the snowflakes as I drive home. I breathe in sharply and feel overwhelmed with gratitude for so many things. That smile, for one thing, when he found the coconuts - it was just for me, and I will treasure it always.

Nigel:  Mom, isn’t it strange? I love pumpkin pie but I don’t like pumpkin.

So often I take for granted my understanding of all the nuances of our culture, including aspects of our spoken communication. I know when someone is making a joke or being sarcastic, I know that sometimes when I make a brief comment or ask a rhetorical question that I usually won’t get a response, and I know that most people with typical hearing only use subtitles when watching foreign films.

My son’s autistic mind usually takes nothing for granted and makes no assumptions. If he makes a statement such as “This mixes my face” while looking into a disco ball, he will repeat the statement until someone acknowledges him. He does not take for granted that I’ve heard him, that I don’t know that he is expecting a response, or that I don’t have one for him. He doesn’t understand why no one is responding to him, so he repeats himself. He doesn’t mind repeating himself five times while I am formulating a response, especially when his statement is something as, um, unusual as “My brain is the size of twenty yellow lemons,” which he said at age eight. I had no idea where that came from.

That was also the year that he discovered that DVDs were better than VHS tapes because he could choose to watch them with subtitles so that he could keep the volume low and memorize the lines while reading them onscreen. One night, when I started watching a movie (without using subtitles), he asked, “Why you didn’t want it without words?” because he couldn’t imagine how I could deprive myself of this convenience. Growing out of clothing was also a difficult concept that year. When his briefs were getting too tighty-whitey and I had to purchase new ones, I forgot that I should have prepared him. He went to get dressed the next morning and stood there in front of his chest of drawers saying, “What about the 6 underwear?” since I had bought him size 8, and his old ones had been size 6. No assumptions.

Fast forward six years, and he is starting to make little assumptions. He realizes that just because he likes pumpkin pie, it doesn’t mean that he’s going to like pumpkin. (I assure him that many people fall into that category.) And he is learning to recognize sarcasm. A few weeks ago, a friend of the family was visiting on a day that Nigel was supposed to have cleaned his room. Since he hadn’t cleaned it, it looked like a bomb had gone off in there. Nigel was sitting on his bed reading when my friend poked his head in the doorway, surveyed the damage, and said, “It looks good in here.”

Nigel paused for a moment as if considering, and then he said, “I know you’re being sarcastic.”

In spite of the messy room, I was rather proud. And definitely amused.

When Nigel was first diagnosed at age three, and for some time after, he didn’t know how to play with toys. I bought him a kids’ train set; he laid his head to one side and stared at the tracks. He had no interest in pushing the train along, even if I showed him how. I bought him Hot Wheels cars and tried to teach him to “vroom” them around on the floor; he lined them up end-to-end along the back of the couch and cocked his head to one side to stare at them. I feared that his imagination would never develop; eleven years ago my only knowledge of autistic adults was, unfortunately, limited to Rain Man. I didn’t know what to expect for my son’s development.

But, thanks to a successful response to a modified ABA-based program for early intervention, and perhaps his own desire, Nigel learned to play with toys. He skipped over “vrooming” on the floor and went right to faster-paced, battery-operated Hot Wheels tracks. His imagination began developing with his desire to feed his stuffed animals. And then he discovered Lego.

I cannot say enough wonderful things about this toy that I loved in my own childhood. Yes, we’ve all gouged our feet on errant pieces and cursed its existence, but the fact is that no other toy has encouraged Nigel’s imagination to develop as much as Lego has. And for that, I love it.

And we have tubs of it. Literally. We progressed from a medium-sized tub to two of them, and then I just up and bought a huge industrial-sized tub with a hinged lid, which is now full. And still Nigel begs for more, especially since they’ve come out with the Indiana Jones series. Oh, my son. Be still, his heart. Lego and Indiana Jones - two of his favorite things. That’s all he wanted for Christmas. It’s like the Lego people somehow knew that this combination would make an autistic teen very, very happy.

So I bought him the sets that he wanted, as well as this book that he has not let out of his sight. Of course he has re-watched all four of the movies several more times since Christmas, just to make sure that he has all the nuances of every line down pat. And so, when he decided to watch the Troy DVD this afternoon, I was pleasantly surprised. “I’m studying the layout of the outer walls of Troy so that I can take apart the Temple of the Crystal Skull set and build Troy,” he told me.

And that, my friends, is what he did. He constructed the ancient city of Troy out of Lego, completely off the top of his head and of his own design. He built a wall with a ratcheted gate and levers to open it. Yes, he even built a Trojan Horse out of Lego. That is either one hell of a toy or one hell of an imagination. He’s come a long way from lining up Hot Wheels cars along the back of the couch and staring at them. And Rain Man? No offense, but you can keep your cards and toothpicks. Nigel’s got an imagination - and he’s not afraid to use it.

I’ve never seen The Seven Year Itch (although at some point, I’d like to). The phrase, according to Wikipedia, “refers to a disinterest in a monogamous relationship after seven years of marriage, has entered the popular culture, and has even been used by psychologists.” And now it will be used by the mother of an autistic teen, with an entirely different meaning.

As my son entered his second year of teenhood, which was just a couple of months ago, I began noticing something. Over the course of a few weeks’ worth of seemingly isolated incidents, I realized that Nigel, who had always been notorious for the eternally flat tone in his voice (except when angry), was suddenly speaking with inflection. And not just random variations - he actually put appropriate emphasis on the right words. His tone was starting to sound conversational! It took another week or two of me pointedly observing him talk and noting the increase of his inflection before I allowed myself to believe it. This is truly a developmental coup. It’s a milestone for the five-year-old boy who, when a child psychiatrist asked, could not say his own name. It’s a milestone for the boy who, for so many years, could only parrot lines from Disney movies or Scooby-Doo cartoons when he wanted to interact with people. He has worked so hard to achieve this.

I know that much of the increase in voice inflection has to do with the weekly social skills class that he is enrolled in at the local middle school this year. It’s a very small class, with only two other students, but I know that the two instructors have been specifically working with Nigel on his conversational skills. Whatever they’re doing - it’s effective. And he’s responding to it, which tells me that he’s ready. It’s time.

What do I mean by that? That’s where my seven-year-itch theory comes into play. Over the years, I have noticed that every seven years Nigel seems to make a huge leap in various areas of his development. It’s like he has this really significant itch every seven years, and when he scratches it, he hits a milestone. For example, when he was two, his sensory issues were so severe that he had to wear a fitted hooded jacket whenever we left the house to muffle sounds and help him feel secure. When he was nine, he had a wonderful regular ed teacher (he was mainstreamed that year with an aide) who not only taught him a lot academically, he patiently encouraged Nigel to remove his hood for the first time. That was also the year that I could take Nigel into grocery stores and the occasional restaurant. Another example of his seven-year-itch is in the cognitive area. When he was three, he taught himself to read, but I was told that it was common for young children with hyperlexia to not comprehend most of what they read. Seven years later, when Nigel was ten and reading at a high school level, his comprehension was tested. It was estimated that he understood about 95% of what he was reading.

When Nigel was seven, seven years ago, he really started talking. He had some speech prior to that year, but it was mostly echolalia and scripting (a term which wasn’t used much then). He would occasionally string up to four words together to communicate, but he had trouble with syntax and pronouns, verb tenses, etc. When he was seven, something clicked. He got an itch. He started stringing together more than four words spontaneously, his syntax and verb tenses began improving, and his echolalia decreased. It was remarkable. Of course, his tone was characteristically flat and downright stoic, but that was okay. It was definitely okay with me.  I figured he would always talk that way, and that was fine.

And now, seven years later, the inflection surfaces. On appropriate words, even. I am so loving this - this unexpected gift. Some seven-year-itches can be good.

I feel like whispering this.

Last night, as I was getting ready to post what I wrote yesterday about Nigel not being able to understand someone else’s viewpoint, he came into my office. He had a pencil drawing of himself with one arm outstretched, reaching upwards to a star that emanated beams of light. Here is what he said:

“This is a poster idea for a movie that I’m going to be in. It’s called The Movie Traveler. I am live-action, and I go into the land of Disney animated movies to be their guardian, because they’ve been searching for one for 40 years. And I help them. In the end I realize that other people are just as important as me. That without them, I am nothing. In order to save myself, I have to save both dimensions.”

I had him repeat those last few sentences so that I could get it all down. Maybe I’m reaching here. Maybe I’m reading too much into what he said. Maybe some lines are from a movie he recently watched. But I can’t help thinking that the fact that he said it is a step in the right direction. And “both dimensions”? To me that’s like the autistic mind and the non-autistic mind. He wants to “save” both. Affirm the importance of both. Maybe even try to understand both. Am I grasping?

It reminds me of the first few years after his diagnosis, when I grasped at therapies, books, treatments, supplements - anything I thought would help. And some of it did, immensely. Now, years later, when he takes these steps, I grasp at them. Because it seems like he’s reaching when he says these things. And if he is, I want to make sure I’m there, meeting him half-way. And if he’s not, I’ll be there anyway.

Someone found this website yesterday by searching “autism + stuffed animals,” and I am not surprised. I’m sure I’ve previously made several references to Nigel having stuffed animals (yes, I just checked - mentioned in general on three posts), but I’ve never written about how attached he really is to them. And, I would venture to guess, he’s not alone in that.

I bought him his first stuffed animal when he was in utero. It was a 15-inchTigger, and he still has it, fourteen years later. A good portion of the stuffed animals he has amassed over the years are specific characters, including Kermit, Simba, ET, Gizmo, Mrs. Brisby from The Secret of Nimh (made with love by Grandma), Otis from Milo & Otis, Harry Potter (yes, a stuffed Harry Potter), and Kuzco in llama form (from The Emperor’s New Groove). Nigel also has a plethora of non-specific stuffed wild animals, including two bald eagles (one 18 inches, one 6), a fox, a wolf, a squirrel, an otter, a capuchin monkey, a mountain lion, a coyote, a bison, a tiger, a mammoth, and at least a dozen bears. The boy loves bears. In fact, he loves all of his stuffed animals. He loves them so much that every year when we attempt to purge his room of things that he has “outgrown,” he refuses to give up any of them.

And so we keep adding to the collection. After all, the Tigger prompted him to do the first imaginative thing he’d ever done. I still remember the shock and joy I felt as he held Tigger at the kitchen table with him and put Tigger’s face in his bowl of frozen corn niblets, pretending to feed him. He even said, “Eat,” in his little voice. He was four years old. I’ll never get rid of Tigger. He has earned a place of honor in our home.

Nigel’s stuffed animals have also been his friends. He has acted out stories with them, talked about emotions with them, and generally been comforted by them. They have helped him to sleep and helped him to feel less lonely. So imagine my surprise when I walked into his room a few weeks ago and discovered that several of the non-specific stuffed wild animals had been gutted. He had removed their stuffing and left all the carcasses strewn across the floor of his room. I noticed that he had put all the stuffing in a soft, knit bag and pulled the drawstring closed. Curious, I asked, “Why did you do that?”

“So I could make something bigger, and it would have the good stuffing of animals I already loved.”

In case you’re wondering, he hasn’t made anything yet. But he keeps the knit bag of stuffing on his bed, waiting.

The reasonable man adapts himself to the world: the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.              -George Bernard Shaw

Yesterday we went to our local Family Fun Center, where Nigel loves to drive the go-karts. As we were en route, the sky clouded up quickly, and it started raining before we even got there. When we pulled up, I looked over at the go-kart area and could tell that they were not running. “Well, guys, the go-karts are closed,” I announced. “That’s okay,” Nigel said. “We can go in the arcade.” Adaptability score: 1

I don’t know how Nigel filters out all the sounds, lights, and people in a busy arcade, but he does. I think it’s because it’s something that he really wants to do, so he’s motivated. Or, it could be because there’s so much going on that even his brain can’t isolate all the sights and sounds, and so it’s just one big bombardment to tune out. But somehow he’s learned to deal with it. Adaptability score: 2

Nigel, having a lower emotional age than other 14-year-olds, has always enjoyed climbing and sliding on play structures. You know, the indoor ones that usually have a height limit of 48 inches, which Nigel surpassed a few years ago. He sometimes rationalizes: “I can go on it because it’s not crowded.” But he is now at an age and size which makes it inappropriate for him to continue playing on the indoor play structures, and doing so could even get him in trouble with people who don’t realize that he’s an 8- or 9-year-old in a 14-year-old’s body. He could be seen as a threat. So, I figured it was time to break him of this habit. He asked, as he usually does at the Family Fun Center, if he could go in Cactus Jack’s Playhouse. I non-confrontationally posed that he might be too big for it, and I suggested that he ask if there was a height or age limit. He came back a moment later and said, “Twelve and up. And since I’m fourteen, I can go in.” “I think it’s twelve and under,” I said gently.  ”But I really like it,” he said in a quiet, forlorn voice. “I know, honey, but you have to realize it’s not built for kids your age.” He looked down and said, “Okay.” Then he looked up and asked, “Will you play air hockey with me?” Adaptability score: Bonus 10 points!

Such a “reasonable man” my son is becoming. And a good air hockey player, too!

Continuing the series on information from the Autism and Puberty seminar I attended . . .

How does emotional age affect adolescence? It’s what makes adolescence come later for ASD teens. And if their social-emotional gap is large, they don’t reach adolescence until well into adulthood; in some cases, not at all. For ASD parents, puberty and adolescence is a long ride that can last into their child’s twenties or later; it’s not over after twelfth grade! Parents are constantly teaching, and ASD teens are constantly learning. It’s a time for reaching out to peers and being more aware of the media. They get information from many sources, and it needs to be filtered. Even though at the onset of adolescence ASD teens tend to want more peer interaction, they are still not connected to what their behaviors look like to others. They will need constant communication about what’s appropriate and inappropriate, and it’s up to parents to provide it. ASD teens don’t ask the questions that NTs ask. It’s up to parents to anticipate what they need to know and guide them.

Typically, adolescence - the time of emotional and social maturation - begins at around age 11 for girls and 12 for boys. In the previous post, I estimated my son’s emotional age to be around 8 or 9. Therefore, I can guess that he should begin adolescence in 3-4 years. He will be 17 or 18. Before I attended this seminar, I thought that because he recently started indicating a budding interest in dating that he was entering adolescence. This is not the case. He is merely reacting to what he sees with his typically developing peers and the teens he sees in the media. About a month ago he asked me what “flirting” meant. I explained it to him in simple terms, and then he printed out a Wikipedia definition and proceeded to notify me whenever he witnessed what he thought was flirting, based on the Wikipedia description. Even 8- and 9-year-olds have crushes and can indicate an interest in the opposite sex. It doesn’t mean they’re entering adolescence yet, and neither is my son.

When he does get there, the presenters at the seminar recommended teaching the following:

• How relationships grow
• How sexual feelings happen and how they can be handled
• Differences between love and sex
• Laws and consequences of inappropriate sexual touching of self and others; importance of impulse control
• How pregnancy can be prevented - abstinence and birth control
• Sexually transmitted diseases
• Homosexuality
• Responsibilities of marriage and parenting

That’s quite a list! I know I’ll need help with that, and I’m sure other parents will, too. Stay tuned for a list of resources, which will be posted in the next installment.

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.