Teen Autism

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.

Teaching empathy to an autistic child is one of the many issues we parents face. I do so in small ways, such as reminding my son to hold the door open for someone who is coming through the same door behind him. I have him help me carry the groceries into the house. We apologize to the cat who was accidentally stepped on. I also try to get Nigel thinking in big-picture terms of empathy, such as donating stuffed animals, toys, and school supplies to a Hurricane Katrina project three years ago and having discussions about the impact of natural disasters and acts of terrorism on people and families, not just buildings.

And so when my sister had the wonderful idea of Nigel joining her for a Habitat for Humanity walk in her area yesterday, I wholeheartedly encouraged Nigel to do it. I told him about Habitat for Humanity and described other people’s living situations to him and how this organization helps. And he wanted to be a part of it.

Yesterday dawned a bit cloudy in Roseburg, Oregon, but we Pacific Northwesterners aren’t daunted by a 66% chance of rain. Nigel went out with his aunt and her dog and jog-walked the two-mile area with about 30 or 40 other participants, and they got a cool “I support Habitat for Humanity” T-shirt out of the deal. I told him I was proud of him for getting involved with a good cause. That night I asked him if he liked going on the walk.

Nigel: I didn’t mind it.

Me: Sometimes when people say they don’t mind something, it indicates that they don’t really like it.

Nigel: Well, the jogging part was a little tiring, but the walking part was okay for me. I liked that part.

Me: Did you like showing support for Habitat for Humanity?

Nigel: Well, we need to do something for the poor.

That’s my boy.

I’m always looking for fun activities the whole family can enjoy that won’t aggravate my son’s sensory issues. So imagine my shock when it was discovered a few years ago that Nigel could actually handle game arcades. Not just the sounds of video games bleeping, but also louder shooting sounds, rolling skee-balls, flashing lights, and being jostled and bumped by strange people. Of course, this sensory processing ability occurred right around the time that he also became able to sit in restaurants. Something clicked and he was able to filter out the sensory issues that had previously been so agonizing for him. It was a relief for all of us. And it opened a lot of doors for activities in which he could participate.

Going to the local Family Fun Center turned out to be one of them. I was a bit nervous the first time I took him there, since the entrance takes you right through a noisy, bustling arcade, but I think my son’s excitement cancelled out any sensory issues he might have experienced. He also had his form-fitting fleece hooded jacket on, and that helped to muffle the sounds. It amazed me to see him handle all the stimulation. After some time in the arcade, I took him outside to the go-karts. He had previously been a passenger on other amusement-park driving rides, but he was tall enough at age eleven to drive his own car, and very excited to do it. As we approached the go-kart area, I coached him about not crashing into the other cars, and to keep going in the same direction. I had purposely arrived first thing in the morning, hoping that there would be fewer people driving at the same time, and I was glad to see that my plan worked. The attendant let us through the gate and told us to take two cars in the front. As soon as Nigel climbed into his car, he took off! He just pushed the accelerator pedal and off he went! The attendant started yelling after him to stop, but Nigel didn’t respond - he just kept going! I quickly informed the guy about Nigel’s autism and told him that this was Nigel’s first time driving and he didn’t know to wait. The guy seemed to understand. He waited for Nigel to finish the lap and then flagged him over so that he could put on his harness. Then he continued for the remainder of the allotted time with me following in my car. Nigel smiled and laughed the entire time. Not only that, he drove just fine.

That was three years ago. Nigel is practically a pro go-kart driver now. He knows to put on his harness and wait for the attendant to say when to start. He doesn’t crash into anyone. Furthermore, he even knows how to block other cars from passing him! We just went go-kart racing yesterday, and he beat me again! But the best part of all is how much he enjoys driving those go-karts. I loved being right behind him, seeing his huge smile every time we rounded a curve.

• Four people to take one 6-minute go-kart ride: $24
• Everyone, including Nigel, enjoying it: priceless.

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.

We are off to Lassen National Park, getting in one last camping trip before summer’s over! Nigel will be hiking up the 10,457-foot peak with me while Aidan (not into hiking so much) joins Grandma for a canoe ride on Manzanita Lake. My mom works as an interpretive ranger at the park, so it will be fun to see her lead one of her ranger programs. We’ll return Thursday with a full report! 

Last night as I was saying good night to Nigel, I noticed that all of his fingernails were edged in black, as if he had taken a Sharpie and drawn under the nail tips and around the cuticles. “Is that paint on your fingernails?” I asked. He breathed in sharply and froze, alarmed because I had noticed. “It’s from the Magic 8-Ball,” he said.

Then I froze. “You took it apart?”

“I tried to get the fortune thingy out.”

I did not respond because I was wondering what happened to the inky, chemical-filled liquid inside the Magic 8-Ball. I was also remembering other things Nigel has taken apart. Finally I decided that since I didn’t see any stained towels or patches of carpet anywhere, he must have dumped the liquid down the drain and must not have ingested any or else he’d be very sick. So I decided not to stress about it.

Nigel: I wanted to know if it was a simple pyramid or a more complex thing.

Me: So which was it?

Nigel: It was not a pyramid. It was like a prism-pentagon.

So there we have it. I, for one, have always wondered about those things. Mystery solved, and in such a metaphorical way. It had to be a more complex shape. How else could it have answered so many of life’s big questions?

The Christmas that Nigel was two, he found the toy hiding place. Yes, early on that boy was probably skeptical about Santa.

I had been on the couch breast-feeding four-month-old Aidan, and out of the corner of my eye I saw Nigel coming out of my room with an odd look on his face. I somehow knew that he had found the toys in the closet. I stood up with Aidan still on my breast (I got very good at that) and walked down the hall to where Nigel was standing. He walked back into my room and stood in front of the now-open closet and said in a flat but certain voice, “Toys.” Much to my surprise, not only had he had spoken (which he rarely did then), but he had also not taken any of the toys out. They were still neatly stacked in the closet where I had put them.

“Yes, those are toys,” I said. “But those toys are for Christmas, and if you open them now, then you won’t have any toys for Christmas.” It was a shot in the dark. I was expecting a full-blown tantrum, mostly because I figured of course the two-year-old wants the toys! But also because I figured there would be no way that he could comprehend what I had said to him.

After I explained about the toys, I closed the closet door, and much to my shock, he just quietly followed me out of the room. I asked him if he would like to watch a Disney video, and he got on the couch with the utmost compliance. It was as if he understood what I had told him about the toys and accepted it! I was floored!

Toys are rather magical things. They can prompt an autistic two-year-old to talk, and they can motivate his behavior in anticipation of receiving them. For years, they also served as therapy objects, teaching him how to play, how to engage in social behavior, and eventually encouraging spontaneous speech.

I wrote this post today because I had noticed several incoming searches for toys for autistic teens. I think the rule of thumb with what would be appropriate is along the same lines as my advice for books for autistic teens: it depends on their cognitive level and individual interests. The difference with selecting toys is that it also depends on their level of emotional maturity. Nigel, for instance, is fairly high cognitively, however, his emotional maturity is a few years behind his peers. I think this is why, going into eighth grade, he still loves his stuffed animals and toys from his favorite movies (Jurassic Park dinosaurs and Thomas the Tank Engine).  He is really not into video games, but he’s always had an interest in science, so he has a microscope, telescope, chemistry set, and volcano model. He is also entertained by robots and remote controlled cars. And Lego. That has to be his all-time favorite toy. I don’t think he’ll ever outgrow it! He hasn’t outgrown looking in closets for toys, either. I’ve had to get really creative as the years have gone by.

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.