Teen Autism

“To live here and now you must train yourself: In the seen there will be just the seen, in the heard just the heard, in the sensed just the sensed, in the thought just the thought. That is the end of sorrow.” –Buddha

As an adolescent I became attracted to Buddhism, but it was nothing that I pursued. Enlightenment sounded peaceful, desirable, but I had other things to do. I thought that someday, if I ever wanted to be affiliated with an organized religion again, it would be Buddhism.

Recently I came across the above quote and have pondered it for several days. “The end of sorrow”? The only way to not experience sorrow is to not be attached to anyone. I can isolate what I see, hear, sense, and think. But no matter how enlightened I am, I will certainly feel sorrow when a loved one dies. I will certainly feel sorrow when a loved one is in pain. I will certainly feel sorrow when my children are 700 miles away for seven weeks.

And so I thought, Buddha must not have had children if he devised this method to not experience sorrow. And when I did some research, I discovered that he did indeed have a wife and a son, whom he left at birth when he went off to do his Enlightenment search. And he was gone for seven years. As a sole parent ten months out of the year, this made me not think too highly of Buddha. All my life I had erroneously thought that Buddha had been some solitary prophet, wandering around learning and teaching. Granted, his wife and son lived in a palace, but the fact remains that he abandoned them for his search for Enlightenment. Okay, it was for the greater good, but I still don’t like it. Seven years is a long time.

But enough of the Buddha-bashing. I’m still attracted to the peaceful, meditative ways of Buddhism. And, if I think about it, I can even rationalize and accept the fact that Buddha left his family to gain some clarity. I feel that way now, with my children away for seven weeks. I climbed a mountain. I’m writing more, talking less. Meditating, reading. But I miss my boys. Enlightened or not, for me the “end of sorrow” will be when they come home.

Here’s a riddle:

What’s both beautiful and exhausting at the same time?

Answer: autism and climbing mountains

I suppose that giving birth could also be a fitting answer to the riddle, running a marathon and stuff like that. But autism is a part of my daily life, and I just climbed a mountain yesterday, so that is what I’m going to write about.

Early Saturday morning, my sister Macrina and I met up with my friend and excellent guide, Tom Prescott (a big shout-out to Tom, without whom we couldn’t have done this), and drove an hour and a half to the trailhead for Mt. Shasta in northern California. We then strapped on our 50-pound frame packs and proceeded to hike five miles to base camp at 10,400 feet. It was brutal! I can hike forever, but I hadn’t thought to train with a heavy pack on, and I wish I had! We got up at 3 AM on Sunday and put on lots of warm layers, crampons, helmets, and smaller day packs with water, our camera, and Power Bars. Then we started up the remaining two miles to the summit. Parts were very scary, like when we were climbing up a crazy-steep (about 60-degree) slope of snow and ice, literally clinging to the mountain with crampons and ice axes. For someone with a fear of falling (me), it required an intense amount of focus and trust. In what do you trust? Your equipment, your technique (I did some mountaineering research last week, but it was my first time trying it out!), and whatever higher power works for you.

At 11:11 AM we reached the summit! Most sources list the elevation as 14,162 feet, but according to Wikipedia, the most current and accurate height per the National Geodetic Survey is 14,179. Here I am with my slightly shorter (but hardier) sister:

As I marveled at our accomplishment, I thought about how often the difficulties we face in life are likened to climbing a mountain (”Climb every mountain . . .” from the Sound of Music, “I have climbed highest mountains . . .” from “I Still Haven’t Found What I’m Looking For” by U2). Raising an autistic child has often been like climbing a mountain for me. I don’t know if a summit even exists, but I will keep climbing, I will focus, and I will trust. Life with autism, though sometimes daunting, is not insurmountable.

Upon returning home, I went to Climbingmtshasta.org to read the Summit Log (unfortunately it had to be disabled due to spam, so I was not able to contribute). I was moved by the number of entries from people who said that climbing it changed their lives, and that the spirit of Mt. Shasta will always be with them. I find myself in that category as well. It is a mystical mountain, majestically standing alone, one that I have loved since first seeing it at age seven. Now, exactly thirty years later, I faced my fear and made it to the top.

Now that it’s summer, our first term of homeschooling is over, and I thought I’d write about how it went. Overall, it was wonderful, and so good to know that Nigel was actually learning something instead of being sent to watch a video in the library as he had at the middle school. Considering the fact that I had to pull him out at the beginning of December and wasn’t able to start homeschooling him until mid-February, he learned a lot. We went quickly through all the science and social science subjects but didn’t get as far as I would have hoped in math and language arts. Next year that is what we will focus on.

I learned a lot about my son’s learning style and how to teach him. He has a semi-photographic memory which helps immensely in fact-memorizing subjects like science and social science, so that’s why we breezed through those. Language arts is challenging because it is difficult for him to organize his mind enough to write an essay, which is what we will spend much of our time on next year. And then there’s math. Nigel, I discovered, is a kinesthetic learner. He learns by doing things, physically taking things apart and putting them back together, climbing, mowing, cooking, sewing, even typing. So I had to figure out a way to teach math kinesthetically.

I realized as we went along that if anyone had tried to teach him division in the past, they did not succeed. I had to start from the beginning. And what I did was this: I got a bag of raw almonds and pulled out 12 of them. Then I said, “Nigel, how many groups of 3 are in 12?” And he looked at the almonds on the kitchen table and he started separating them into groups of 3, and then I saw the light bulb go on in his head. He got it! There was a hint of a smile on his face as he quickly finished separating and then said, “Four!” And then I showed him how that translated on paper with the long division sign, because when we first started going over it, he acted like he had never seen it before. My boy must have just felt so lost at school.

The other thing I did in teaching math which helped tremendously was to write out a list of steps for working with fractions, like changing improper fractions into mixed numbers, which I had written about previously. I was smacking my forehead because I didn’t figure this out until near the end of the school year, but at least I did figure it out, and I will certainly be implementing the “written list of steps” technique next year.

The last two days of homeschool, I had Nigel take a CD-Rom test, State Standards Middle School Edition. The tests were great, but I experienced some aggravating compatibility issues. The tech support guy I spoke to for over half an hour was not sure if it was a Vista issue or my dual-core processor. After uninstalling and reinstalling both Quicktime and the test program, it still takes about fifteen minutes to load the program, but once we get the test up and running, the test itself works fine. It’s easy for Nigel to navigate, and at the end it shows his scores in different categories of each subject so that we know which skills he needs to work on next year and in which areas he’s doing well. I’m very satisfied with how homeschooling went for the past four months, and I’m looking forward to next year. I think we’ll both really hit our stride.

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.

My younger son Aidan graduated from elementary school today! If I feel this much pride and emotion for elementary school, how much more will I feel for the bigger milestones? His Kindergarten teacher got up and said a few words about his class and I felt a little lump in my throat. Because not only did I feel that way about my own child, I did about so many children in his class. I have watched them grow up for the past six years, and they are such a wonderful, cohesive group of kids. Of course, I don’t know all of them, but I am glad to know the ones I do, and their parents.

I am so proud of Aidan! He did very well this year, worked hard and accomplished a lot, including the beginnings of a book! It’s called ETB: Experimental Tested Bomb, sort of a sci-fi novel with a solid main character and intriguing plot. Writer-Mom is thrilled about its potential! He had it with him at the graduation, the printed first chapter rolled up in his lap.

Big brother Nigel was also excited, and enjoyed sitting in the audience with his parents (their dad drove up from LA to be here), watching his younger brother do what he did two years ago, seeing his previous teacher (who also taught Aidan), and some of his friends who came with their younger siblings. In Nigel and Aidan’s classes all through elementary school there were five sets of siblings with the younger ones in Aidan’s class and the older ones in Nigel’s class. They’re a great group of kids, and I’m proud of all of them. I think that’s one of the many novelties of having kids: watching their friends grow up too, and caring for them. There’s so much room in the human heart.   

Luke Jackson, the thirteen-year-old author of this book, says he wrote it because “so many books are written about us, but none are written directly to adolescents with Asperger Syndrome. I thought I would write one in the hope that we could all learn together.” And he does an amazing job of appealing to his peers in a colloquial manner.

I bought this book because I thought that Nigel, as a mid- to high-functioning autistic teen, would understand it and benefit from it. We read it together, so that we could discuss it as we went along. Jackson is English, so I occasionally had to “translate” a few words and phrases for Nigel, such as “fancy” for liking something. As we read, many times Nigel’s attention wandered, I think because he found Jackson’s writing style a little hard to follow. But then, Nigel does not have Asperger’s. I have often read that many people view Asperger’s as high-functioning autism, but there are many differences, which I will discuss in a future post.

Back to the well-written and enlightening book. Jackson’s style is almost precocious at times, but effective. He begins by introducing his close-knit family of seven children and their mother. (There is no mention of his father, that I recall, and I felt dizzy at the thought of parenting seven children alone.) It was interesting to read about their background and personalities. Jackson moves on to a description of Asperger’s and discusses the pros and cons of telling others about it. He relates that when people don’t know he has AS, they refer to him as a freak, but when they know about it, they are tolerant.

Next is a discussion of obsessions, which he calls “specialist subjects,” and compulsions. (Nigel was only vaguely interested in this section, which tells me that he does not think of himself as having obsessions.) For the compulsions, Jackson speaks to any parent readers by suggesting that they try to control their child’s compulsions with rewards.

The following three chapters concern sensory perception, physiology, and sleep, and Nigel managed to extract some helpful tips for himself. In the area of sensory perception, he agreed that looking at someone while they are talking is often difficult, and he liked Jackson’s suggestion to look at people’s mouths when they’re talking, which is close enough to making eye contact. Of the many suggestions that Jackson made in the sleep chapter, Nigel liked the following metaphor: “My room and my things are familiar, my security. The dark creeps in and steals that familiarity and security away.” Nigel also agreed that listening to relaxing CDs and music, something that Jackson mentioned, helps him to sleep. The section on physiology discussed, among other things, the GF/CF diet, which was not helpful to us, but certainly has been for others.

Next Jackson writes about language difficulties, dealing with slang and idioms, and suggests to parents that they write out steps to complete a task (which I also find immensely helpful) and give clear and specific instructions. The next chapters deal with school problems and bullying. In the school problems chapter, Nigel identified with the fact that writing with a utensil actually hurts his hand, and this was the first time that the problem registered in my mind. The bullying chapter had some tips for dealing with bullies and stressed that it was important to tell someone. Jackson then mentions Taekwondo for self-defense, as well as the many other benefits it provides.

The next three chapters dealt with friendships, dating, and morals and principles. Nigel is just getting interested in the topic of dating and has been asking questions, so this book helped a lot in that area. The “morals and principles” chapter also was beneficial in that it stressed not to let people entice you to do something that is wrong, that you don’t need friends like that. It reinforced what I tried to teach Nigel at the end of the last school year.

The end of the book has a nice positive note about AS people being amazing in their own ways, even if not savants (after a discussion about the movie Rainman). It is certainly amazing for a thirteen-year-old to write such an organized, insightful book. We found it very helpful, including the appendices on idioms (with definitions of being “on cloud nine” and “don’t cry over spilled milk”) and references for further information (books, websites, and organizations). All in all, a worthwhile book for parents and kids alike.

This is the first post in a new category called Tips from the Trenches. I’ll try making lists like these of various topics on a regular basis to contribute to that category.

1. Communicate with your child. Often kids will not elect to tell parents about bullying, for whatever reason. Nigel said he didn’t want me to worry, so he didn’t tell me until I started noticing his classic stress symptoms: bald spots from pulling out his own hair and badly chapped lips and mouth area. Pick up on any non-verbal cues your child has to indicate stress and then ask them if someone has been bothering them. Sometimes you have to drag it out of them, as I did with Nigel.

2. Remind your child how smart he/she is and how much you love him/her. Bolster his/her self-esteem as much as you can. Assure your child that you’ll do everything you can to get the bullying to stop.

3. Contact your child’s teacher(s). Diplomatically state what is happening and offer any suggestions you may have for stopping it.

4. Within a week check in with your child to see if there are any changes in the situation. Check in with the teacher(s) to see what has been done and report to them what your child has indicated about the situation now.

5. If the situation has not improved within two weeks, contact the dean or principal. It is a good idea to be familiar with them anyway, because they need to know all of their special needs kids, and they like to be aware of how involved you are as a parent.

6. Keep tabs on the situation. Keep checking in with your child. I made the mistake of assuming that things were okay and not asking. We must be vigilant advocates. If we don’t advocate for our children, who will?

7. Be the squeaky wheel. If necessary, have the dean or principal schedule a meeting with the bully’s parents (with the dean or principal in attendance). Do not accept bullying. Unfortunately we can’t all homeschool our children. But what we can do is send a very strong message to the schools that we parents of autistic kids will not tolerate bullying or any form of harassment. Don’t accept “Kids will be kids” or “This is a difficult age group” as excuses for bullying. It’s discrimination against someone with a disability. And it needs to stop.

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.

It was seventh grade that really kicked our collective butts. The proverbial straw that broke my camel’s back. It started off with Nigel getting punched in the face on the third day of school and only got worse from there.

It was during lunch when three boys verbally ganged up on him, riling him up, probably trying to make him lash out so that he would get in trouble. He was getting very agitated, verbally defending himself, and stepped in really close to the lead boy to try to make his point. Apparently Nigel “touched” the other boy on the arm. That made it okay for the boy to sock Nigel’s cheekbone, because Nigel had “touched” him. The other boy was exempt from reproof. The school’s dean called to tell me what had happened, adding in a condescending voice that he explained to Nigel that he shouldn’t “touch” anyone. He might as well have said that Nigel asked for it. I was livid. Let’s blame the autistic kid! Yeah! He started it! I wanted to wring all of their necks, especially the dean’s.

During the second week I noticed that Nigel was having problems at the bus stop, just two houses over from our house. The bus would pick them up just before I left for work in the morning, and often I would be walking out to my car and hear what was going on. Usually it was an argument: Nigel wanted to talk about Leonardo da Vinci and some girl would tell him to shut up because she didn’t want to hear about it. I didn’t intervene in those situations; I thought it best that Nigel learn that he can’t expect everyone to be interested in what he’s interested in. But one morning as I walked out to the car, I heard laughter. I heard Nigel’s angry tone. I looked and saw seven kids (one from his Boy Scout troop!) standing in a semi-circle with their arms crossed, laughing at Nigel. That was unacceptable to me. As I walked over there, one of the kids started walking behind Nigel, mimicking prancing movements, to the other kids’ laughter. I told them how disrespectful and wrong it is to laugh at someone who has autism and communicates differently. I told them I was disappointed in them, especially the Scout. I wondered how many times this had happened before.

From that day on I drove Nigel to school in the mornings. He didn’t want me to (”Mom, I want to be just like everybody else”), but I could not subject him to that treatment. The bus company, when they’d heard of what happened, called me to suggest that they send a sped (special education) bus to pick him up in the mornings. I almost guffawed at that! Did they actually think that picking Nigel up in a sped bus, in front of his peers, would help his situation? That would make everything worse! I told them No, thank you. On top of the bus stop issue, the hallway jeers still occurred on a regular basis, and during lunch Nigel was “accidentally” hit in the forehead by a rock.

It was at that point that I seriously began to consider homeschooling my son, as I have written before. When I had discovered some options to make that happen, it was late October, and I wouldn’t be able to make the change until January, so I planned on pulling Nigel out of the middle school at Christmas break. He didn’t make it that far. By the end of November, he had been suspended for being disrespectful to a teacher after having a girl verbally bully him in the hallway before class. When he walked in, he was so agitated that he couldn’t sit down, so the teacher ordered him to, and he just couldn’t take any more. “You need to sit down!” he said, and was suspended for it. The suspension was just a day, but it angered me that an autistic student was being targeted for behavior that was out of his control, after he’d been verbally assaulted by another student, who went unreprimanded because no one had witnessed it.

The first week of December I got a call from another dean at the school. Nigel had made an inappropriate, sexually explicit comment to a girl. I almost had a panic attack. This was one of the things I had feared. I’d read stories about parents being taken to court over things their autistic children had said or done, and I begged the dean to explain to the girl’s parents, who were understandably upset, that Nigel is autistic and did not understand what he was saying. I knew before I even talked to Nigel what had happened. A group of boys had encouraged him to do it. They were all standing around laughing, talking about “Wouldn’t it be funny if you walked up to a girl and said such-and-such,” and got Nigel to think it was funny. Nigel, at 13, has the emotional maturity of a nine year old, if that, and probably didn’t even understand it to be a sexual comment. I tried explaining this to the dean, but they still suspended Nigel again. I told him that Nigel wouldn’t be back.

And that was the end of the bullying.

Because of Nigel’s social, extroverted nature and his desire for kids to like him, he would do anything to have what he thought were friends. I suppose I should consider myself lucky that he wasn’t coerced into doing anything illegal, but after what happened last year, I could see that things could easily get to that point.

As I described in yesterday’s post, the hallway torment resumed, and now it included more kids, even girls. They knew better than to try anything in class, since the teachers were now aware of what had been going on, but it was open season in the hallways. Nigel became so anxious in class just anticipating being harassed after class that he couldn’t focus and would become disruptive and get in trouble. I didn’t know what to do for him, so I thought I’d discuss options with his teachers and the special education coordinator at his upcoming IEP.

It was there that I learned of something else that made my blood boil, something I had been completely in the dark about. Apparently Nigel’s teachers in the classes he had after lunch had been wondering why he would come in the classroom hot, sweaty, and complaining of being tired. It was spring, but not yet hot. He would lay his head on his desk and not be able to get any work done, or refused to do any, claiming that he was “too tired.” Not one teacher had contacted me to discuss this. Finally, after a few weeks, one of the aids witnessed him running laps around the field at lunch. When asked why, he said, “My friends told me to do it. I have to prove to them that I’m strong enough.” These “friends” turned out to be a group of kids who would tell Nigel to run laps or perform various tricks and then laugh at his expense. But what was even worse was that when the adults at the meeting told me about it, they were laughing. They were jovial, as if my son was there for everyone’s amusement. As if it was funny that Nigel wanted to do these things. When they saw my face and realized that I did not find it to be the least bit humorous, they immediately became serious and assured me that they explained to Nigel that he doesn’t have to run laps and do tricks just because the kids told him to. That’s when I lowered my voice and said, “That’s not what is upsetting to me. Those kids need to be told that it’s NOT okay to get the autistic kid to do something and then laugh about it. They’re taking advantage of someone with a disability.” Why do educators only focus on “fixing” the autistic kids? Yes, the autistic kids need to work on inappropriate behavior. But so do a lot of the NT kids. What they were doing to Nigel was highly inappropriate, to say the least.

That’s when I remembered stories about autistic kids who’d had drugs or weapons planted on them by “friends” just to get them in trouble. I talked to Nigel that night, tried to gently explain to him that real friends don’t tell you to do anything. “But I wanted to do it. It’s okay because I’m strong enough.” “I know you’re strong enough. You’re stronger than anyone realizes. But if someone wants to be your friend, it will be because they like you for who you are, not because you can run laps or do tricks.” I saw the realization dawn on his trusting face. “Okay,” he said quietly. I hugged him tight and hoped that things would be better for him in seventh grade.