Teen Autism

The year that I was six, I was sick on my birthday, it rained when we went to Disneyland, and I didn’t get the Baby Alive doll for Christmas. That was disappointing. The year that I was twenty-six, I didn’t get a big job I applied for, my son was diagnosed with autism, and my then-husband announced that he wanted to be separated. All rather disappointing (at least at the time).

We all have our own ways of dealing with disappointment. Some indulge in retail therapy, some take a hot bath, some tell themselves that something wasn’t meant to be. Some get angry and frustrated, or sad. Some take it out on themselves. Disappointment is another emotion that autistic teens are faced with learning how to manage. Of course, all people must, but for someone who has trouble identifying and dealing with difficult emotions, it’s that much harder.

Nigel’s NT friend Riley was supposed to spend the night last night as a positive reinforcement for Nigel cleaning his room. He earned it, and he was really looking forward to it. Then Riley called to say that he hadn’t fully recovered from an illness yet and couldn’t make it. Nigel seemed okay at first and retained his composure on the phone, which impressed me, but afterward I could tell that he was definitely upset. He yanked his hair in his fists and shut himself in his room, where he proceeded to knock a bunch of stuff on the floor he had worked so hard to clean. “I cleaned my room for nothing,” he sneered.

After a few minutes, I went in and sat with him on his bed. I acknowledged his disappointment. Then I gently reminded him of the exercise he had recently done in his social skills workbook called When Plans Change. In it, he learned to create a visual image of changing the plan in his head by removing the old plan, represented by a Post-It note with “Old Plan” written on it and stuck to his forehead, and applying a new plan (a Post-It note with “New Plan” written on it). The new plan consisted of dinner out at his favorite Mexican restaurant, going out to get ice cream, and renting a movie of his choice. And the assurance that Riley would spend the night on a future weekend.

“New Plan” seemed to be an acceptable consolation prize, even though I could tell he was still having a tough time, still wishing his friend could be here. Last night he kept coming out of his room spouting random movie echolalia, which he usually does when stressed. Later, he started coming out of his room talking about bully revenge plans. I think he was displacing his disappointment about his friend not coming over onto a scapegoat of sorts, which seemed to help him. I was glad he found something that worked. Whatever way it rains on our proverbial parades, we all learn to deal with disappointment, whether it’s by doing something to make ourselves feel better or by visualizing Post-It notes on our foreheads. And sometimes a little note helps more than we realize. It might even help us get what we want for Christmas.

Autism and anger - two A-words that don’t go together well. The combination ain’t pretty.

Last night, Nigel was angry. I had given him an ultimatum: You must clean your room or you can’t have your friend spend the night this weekend as planned. This last resort came after a series of interventions on my part to make the room cleaning as easy as possible. I wrote instructions, broken down into steps, for him to refer to while cleaning. I offered the positive reinforcement of having his friend spend the night this weekend. He called the friend on Monday to invite him to spend Friday night, and as of Wednesday night, he had not lifted a finger to pick up his room. Urging him to get started was met with indifference. I mentioned that he would not receive his allowance until the room was clean. Not motivating enough. I removed the DVD player from his room. No worries. So, faced with letting it slide or hitting him where it hurts, I gave him the ultimatum. And I think the real reason he became angry is because he knows that I’ll follow through with it.

Nigel has two ways of expressing anger - he destroys things in his room or becomes a mad dog. The fact that he chose not to destroy anything in his room last night told me that he didn’t want to make the situation worse because, deep down, he knew that at some point he would have to actually clean his room. So, on some level, he still had control of himself. He just wanted to act like he didn’t.

The first time Mad Dog entered our home, I was quite scared. Nigel, heading into adolescence, was having a lot of trouble filtering the sensations caused by his new hormones. I didn’t know what to expect from him. He was hissing, growling, biting, and making death threats. I don’t even remember how I got him to calm down - I think I just waited it out, holding my breath. Mad Dog has reared his head a few other times in the last couple of years. The death threats have subsided, but the rest of it is no picnic.

After I told Nigel that he would have to cancel his sleepover unless he cleaned his room, Mad Dog came bounding out. He leaped around the living room, growling and hissing, jumping on the back of the couch where my boyfriend Rick and I were trying to watch a movie. I was not pleased. I tried herding him back to his room, at which point he threw himself on the floor and began biting my legs. My patience wearing thin, I left him there in the hallway and went to the bathroom to regroup.

I came out a moment later to the sound of laughter. Apparently, Mad Dog had gone back out to the living room to jump on the back of the couch, and Rick deftly infused some humor into the situation. He grabbed Nigel and gave him a wedgie. That startled Mad Dog right out of him! Nigel went back to his room for a few minutes, and then he came out with a plan. He knew that shoving everything into the closet wouldn’t fly, so he offered to bundle it in an old sheet and drag it into the storage room. I came up with a plan of my own. I told him that first he should put away all the clothing that was on the floor, and then we’d consider using his sheet method. He said okay. After he’d put away all the clothing, I went in and surveyed his room and said, “Why don’t you just put all the stuffed animals back on your bed?” By the time he had done that, the piles on the floor looked much more manageable. I suggested he pick up all the DVDs. “Just the DVDs,” I said. Then, since it was bedtime, I suggested that he could do his sheet plan tomorrow, after he had picked up the books. He said okay.

And so we managed to learn a few important things here at Teen Autism:

1. Humor is a significant tool for diffusing anger.

2. Allowing Nigel to come up with his own plan is an effective motivator.

3. Compromise might actually be possible.

4. Bargaining is very productive.

5. Mad Dog is vulnerable to surprise wedgie attacks.

So often with ASD in the house (and especially away from the house), we focus on damage control and looking for signs of anger, frustration, and sensory overload, trying to cut them off at the pass before they mushroom into a complete meltdown. We instinctively watch for signs of escalation in our children and have learned their triggers, how to avoid them if possible and how to manage them if not. We are attuned to their body language, their sounds, their facial cues. We’ve got it down to a science.

Last night I heard Nigel’s laughter while he watched a funny movie, his hearty, sincere belly laugh.  And I smiled, enjoying his happiness. He also hums when he’s happy, a soothing little six- or seven-note tune that he repeats over and over again. Often I will walk by his bedroom as he is working on his computer, building Lego, or reading, and I hear his happy humming. And I remember when he was a baby how I used to hum while rocking him in the rocking chair, my humming reverberating near his head as we both rested. His current hum is not the same tune, but when I hear it I get the same feeling, the same serenity, as I did with my humming from his babyhood - ethereal, calming, and restorative.

The signs of contentment are just as important as the signs of distress. We may not need to attend to them, but we appreciate them, fleeting as they may be. Sometimes I think we need to pay as much attention to those moments as we do to the others.

Happy humming, everyone.

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?

It’s so quiet that it feels like the house is holding its breath. Today marks the half-way point of my sons’ summer visit with their father for seven weeks.  They return on August 1, and I am longing to hear their voices and footsteps fill the house again.

I remember when I was growing up in the seventies I would read books and see movies from the fifties and sixties about kids going away to camp for the summer. It was for much longer than one or two weeks; it was like, two months. Remember the original Parent Trap? They were gone for so long they were able to fool their parents when they got back! It just seems like that was the thing to do then - go to camp for the summer. I never did as a child. And although I wondered about it, I was glad that I didn’t have to go. I like the outdoors, but I would miss home. And what about the parents? Did they want to send their kids to camp, or did they do it because it was the socially acceptable thing to do? I try to imagine what that was like.

So I pretend that my boys are away at camp. They’re at Beach Camp. I just talked to them last night, and it sounds like that’s what they’re doing the most, what they enjoy - going to the beach. They both like to boogie-board, which is amazing to watch. I saw them do it when I visited them in LA three and four summers ago.  It is wonderful to watch your autistic child excel at something. It’s wonderful to watch any child excel at something, autistic or not, but there’s more gratitude concerning the autistic child. Because not too many years ago I wondered if mine would enjoy doing things like that, would enjoy anything other than watching Disney videos and lining up Hot Wheels cars end to end along the back of the couch and leaning his head to one side to stare at them. Yes, I am grateful that my autistic child has learned to boogie-board, and he likes it.

I have much to be grateful for. I think that is the key to getting through the next three and a half weeks of missing my sons. I’ll keep in mind all the things I appreciate about them, what makes them special as individuals. Just like the twins in The Parent Trap. Their parents were happy when they came home from camp, too. But at least I’m able to tell my kids apart!

Most of us have a part of our life that we detest. For some it is a job, or traffic, or a person. What I detest about my life started almost seven years ago, when my children’s father moved seven hundred miles away. I don’t detest him. Or even being a full-time single parent, especially with autism in the picture. What I detest is having my boys gone for several weeks every summer when they visit him. And they just left this morning. I cried in my empty house, missing them already.

I can tell myself, I need this break, I can enjoy the seven weeks of not stepping on Legos or Nigel’s rocks or sticks or tools left out in the middle of the floor, seven weeks of having a clean house and only myself to cook for, and seven weeks of coming and going as I please. I can remind myself that they need to spend some time with their dad, who loves them and cares for them, whom they miss so much.

And I can distract myself with my household projects that pile up during the year, adventurous activities that I wouldn’t be able to do with my sons (one summer I went skydiving, this year I plan to climb a 14,179-foot mountain), spontaneous weekend trips with only myself to pack up and feed, lengthier trips that I can only afford to do on my own (China three summers ago, Slovakia and Greece last summer). I have also been asked to come back to my job part-time this summer, which will get me out of the empty house and help out my bank account as well.

And so I will make it through these seven weeks, as I do every summer. In earlier years, I couldn’t make it that long without seeing the boys, embracing them, smelling the tops of their heads. About half-way through the summer I would go down to visit them, which I think they needed as much as I did. Now that they are adolescents, I force myself to trust and take a step back. Last summer I did not visit them and will not this summer either (mostly for financial reasons, truth be told). This is hard on us, but it’s making us stronger as individuals, and stronger as a family. It enriches our lives with new experiences (they get to do a lot of fun stuff in LA that they can’t do in southern Oregon) and learning how to work through difficult emotions. But even with the positive aspects I can find in this situation, I miss my sons more than anything.

After they drove off this morning, I walked through the house and saw a pair of Nigel’s socks left out on the living room couch. Two nights ago he had taken them off and lay down on the floor with his feet hanging over the arm of the couch, facing me where I was sitting. He waved at me with his feet, which are now bigger than mine. And I thought of Aidan’s feet, and how he borrowed my water sandals the other day because he’d grown out of his. I wonder how tall they will both be when they return. But mostly I just think of how good it will be to have them home. And even though I love not stepping on errant Lego pieces, I love to see them strategically littered throughout the house, reminding me of my sons, that they will be back before too long, and I will hear their laughter (and occasional bickering) and embrace them and smell the tops of their heads again.

Writing this week about my son’s experiences being bullied has been evocative for me, and a bit difficult. I relived a lot of the feelings of anger and desperation I felt, wanting to make it stop, wanting to shout out to the world that this shouldn’t be happening. It shouldn’t happen to anyone. But it does. And it probably will continue to, even with widespread awareness.

Why is this so? What causes kids to bully other kids? I struggled to understand it as a young child, when I witnessed developmentally disabled kids at my elementary school being verbally bullied. I knew that I would never do that to anyone. And as I got older, when I was Nigel’s current age, I suffered emotional bullying at the hands of some girls at my junior high. The scars are still with me. Maybe that’s why I became so angry about what was happening to my son. But wouldn’t any parent feel that way?

I still wonder why some kids are bullies. Perhaps there will never be a definitive answer. Most likely the reasons are different in different situations. I wonder if the kids do it because they themselves have low self-esteem, or are bullied at home in a vicious cycle that perpetuates itself. Or maybe it’s hormones. My mother used to tell me that the girls were mean to me because they were jealous of me. Of what, I could never fathom. I was quiet, introverted, and sensitive. I was a good target, a sure thing. And they got to me every time.

Autistic kids are good targets. They have odd ways, and some of them get frustrated easily. They are trusting. And some of them will do anything for acceptance, even if they are laughed at. And unfortunately there are NT kids who will exploit all of that. They don’t care about making someone feel bad. Maybe they weren’t taught to care. Who knows?

The National Middle School Association Journal provides some additional findings from studies: bullies need to feel in control over someone else, bullies tend to have lower academic achievements, bullies tend to be depressed, and bullying is most common in seventh grade. Most disturbing of all is the overwhelming belief that victims of bullying actually brought on the bullying. This was from a school-wide survey taken at several different schools!  How can we even hope to work against widespread beliefs like that?

We will probably never really know the individualized, complex reasons why bullies do what they do. But one slightly reassuring fact (per my internet research) is that bullying is much more common in middle school than in high school. That means that things might be better for Nigel when (and if) he attends the local high school in a little over a year. I’m holding out for that.

Nigel had a pet mouse for six months. It was the cutest little beige-colored furry thing. It was his own responsibility to feed him and change his bedding and water, which he faithfully did. Nigel named him Jonathan after Jonathan Brisby in The Secret of NIMH, one of his favorite movies and books. He told me that he held Jonathan every night for five minutes before going to sleep. One morning last week I noticed that Jonathan was curled up in a ball on the floor of his cage and not visibly breathing.

It has been interesting to me over the years to see the progression of Nigel’s acceptance of death. His first experience was at the age of nine, when our first cat, whom we all loved, was hit by a car a mere 50 feet from our house and instantly killed. Our neighbors called to let me know, and I brought the cat into our backyard. I went inside to tell Nigel and Aidan, who had very different reactions. Aidan began sobbing, and as I consoled him, Nigel became very angry and stormed out to the backyard. I hated to leave Aidan as he was, but I had an even worse feeling about Nigel’s state. I found him pulling his bike out of the shed, buckling his helmet (odd that he had remembered), and about ready to ride off, saying, “I’m going to find whoever killed Max and kill them for revenge!” After my initial shock over the length and complexity of his sentence, rare at that age, I somehow was able to diffuse his anger and help him let go of his need for revenge.

About a year later, Nigel and Aidan’s great-grandfather died. He lived a few hundred miles away, and they had only seen him twice, but they sure loved that man. I think Nigel internalized his sadness because he didn’t know how to deal with it. Sometimes now, three years later, he’ll come up to me an hour after his bedtime to say, “I keep thinking about my great-grandfather.” That’s good, I tell him. That way you’ll always remember him. But I’m sure that right now he would want you to get some sleep.

About two months ago, we had another cat die. He was a day-time roamer, but he always came home every evening. I think someone in the neighborhood got tired of him coming in their yard, trapped him, and dumped him on the other side of the highway that runs through town. I found him three weeks later, but he appeared to have been dead for just a week or so. He had been hit on the highway on his way back home to us, loyal cat that he was. So I brought him home to bury him, and Nigel calmly helped me. 

He tells me all the time that he misses that cat, but he has never indicated a desire for revenge, which I am glad to see. And even though I haven’t seen him cry about the death, I know he is dealing with the emotions surrounding it. Last month my father had surgery to remove a tumor, and when I told Nigel about it, he said, “Well, if he dies, just don’t tell me.” At first it sounded like he was being calloused, but I knew what he meant. He didn’t want to know about it because he didn’t want to feel the sadness again. And he knew it would be worse this time.

I am happy to report that my father came through surgery and is recovering very well. Jonathan the mouse, however, didn’t make it. And so, I tried to think of the best way to tell Nigel. I thought of saying, “Have you checked on Jonathan today?” or “I think something’s wrong with Jonathan,” but I settled on the more direct, “Nigel, I’m sorry to tell you this, but Jonathan died in his cage.” When I said it, Nigel stiffened; I could tell that it shocked him. But then he said, “Well, rodents have a short life span.” He went to go look at the mouse, and I asked him if he wanted to help bury him. “No. That would cause too much sadness.” So I did it myself, reflecting on his ability to identify his emotions and knowing what his limits are with how much he can handle. I think that’s pretty amazing. I wish I could have that outlook on my whole life.

Man, what a day. Just when I think things are going pretty well, thinking I can breathe a little easier, the phone rings. As an introvert, I don’t get too excited when the phone rings anyway. But when Nigel’s not home and the phone rings, I get nervous.

This afternoon, Nigel wanted to ride his bike to a neighborhood kid’s house a couple of blocks away, so I said sure, just be careful and be home by five. Less than 45 minutes later, the phone rang and it was the elementary school about half a mile away. Apparently the kid he went to visit wanted to hang out at the school, so Nigel went with him, and then he proceeded to get into an argument with the kids in the after-school club there. One of the girls said something that upset Nigel, and things escalated to the point where Nigel was so agitated that he threatened her by saying he would tear her arms and legs off, after she had called him a second-grader. I told the school I’d be there in five minutes.

If I had a dollar for every time all the schools over the years called me about Nigel’s disruptive behavior, I could certainly pay for a much-needed massage for myself. You would think after all these years that I would be used to it, that it wouldn’t rattle me the way that it does. But every time it happens I feel like I have a brick in my gut and a sense of hopelessness floods my veins. I’m so tired of it. I’m so tired of having to apologize and explain my son’s behavior to someone and wondering if it will ever change.

But this time was different. This time Nigel apologized, and without prompting. To the adult moderator of the club he said, “I’m sorry, I have autism and sometimes I can’t control my anger.” And then, on his own, he went and apologized to the girl, told her that what she said had upset him, and she apologized to him. It was like something out of a movie. Something I wouldn’t have dared to dream of.

And the brick was gone and I thought, Wow, he’s actually starting to get it. Then we went home and I talked with him about what had happened, and how proud I was of him that he had apologized. He still needs to do a lot of work in the area of letting go of an argument and the feeling that he has to “get back at someone” when they upset him, and remembering that it’s never okay to threaten people. And I know I have to prepare myself for many more confrontations and ensuing phone calls. But we made progress today. Development is always slow, but it’s there. And so is my faith in him.

For many years I could not say that Nigel was autistic. I could not say, “My son is autistic.” I would readily tell people “My son has autism,” because to me that was different than calling him autistic. The autism, I accepted. To me, saying someone “has autism” puts the focus on the person rather than the disability. Saying my son “is autistic” makes it sound like the autism is his identity.

But it is. It’s part of his identity.

It took me so long to realize that and accept it. I used to tell friends and family, “We say that Nigel HAS autism rather than he IS autistic, just like you say that someone HAS Down syndrome rather than someone is ‘Down syndromic.’” I’m sure I sounded like I was stuck in some level of denial. I was willing to admit that my son had a disability, but not acknowledge that it was actually part of his personality. 

I’m not sure what changed. Maybe it was a subconscious need to fully process the way autism affected our family. About two years ago, I started saying, “My son is autistic” when mentioning him to strangers or acquaintances. And I was surprised to find that I actually felt comfortable saying it. Sometimes I would say it by myself, quietly, in my room. I would hear the words coming out of my mouth, and with them came a sense of something that resembled peace. Autism didn’t feel as much like this formidable disability when I used that different terminology, the one I had resisted for many years. The word I had told other people not to use: autistic. It was almost a relief that now I could actually say it: My son is autistic! I realized that I had finally truly accepted the autism present in our lives because I embraced it as part of my son’s identity, not just something that he “has.”

My realization was further supported by an interview I recently came across at Natural Learning Concepts, featuring Daniel Hawthorne, a high-functioning autistic adult who was non-verbal until the age of seven. Here is his response to the issue of having autism vs. being autistic:

Do you get upset if you’re called “autistic” rather than “a person with autism?”

“Actually, I prefer to think of myself as being autistic rather than having autism. Autism is pervasive; it affects every facet of my life.  It is not just something I have in the sense that one may have diabetes or epilepsy.  Autism affects the way I think, my personality, my abilities and much more, and I accept it.”

I have come to feel the same way about Nigel. I never thought of autism as a disease (like diabetes or epilepsy mentioned above), but I seemed to think I could refer to it as such, in saying it was something Nigel “had.” I have finally come to terms with the fact that it’s part of who he is. And whether he is able to achieve the high level of functioning that Daniel Hawthorne has, or if he stays the same, or even if he regresses, Nigel will always be the amazing person that he is - my autistic son.