Teen Autism

Nigel has begun his social skills class at the local middle school where he had been mainstreamed until last December. The class meets once a week and has a total of three students and a teacher. He was not looking forward to it.

“It burns! It burns!” he wailed as he writhed on the floor shielding himself, like Gollum. I had just walked him into the classroom and didn’t feel comfortable leaving him in such an agitated state, but I also thought that my presence was encouraging him to act out. I suggested he remember his “cool-down techniques” we had talked about, but he wasn’t responding. He had built things up in his mind to be more than he could handle. While waiting out in the hall a few minutes earlier, he had gasped and turned his head to the wall every time another student walked by, not wanting them to notice him, not wanting to be there at all.  

Nigel: What if it’s one of my bullies and they see me?

Me: You’re with me, honey. They can’t say anything mean to you now.

Nigel: What do the bullies live off of if they can’t get me?

Me: They find someone else.

Nigel: There should be a school just for bullies to go to so they can bully each other.

Yeah. They can call it Bully U.

Those of us who have ever had some type of counseling or psychotherapy know how beneficial it is to be able to talk with a professional about what’s going on in our lives and how we’re handling it (or not). Therapy is also helpful for discussing past events, especially traumatic ones, how they affected us, and how we can work through them. But what if talking is difficult for you? Or impossible? What if you don’t process events and emotions verbally? ASD people encounter just as much, if not more, stress and difficulty while trying to function in an NT world, and many of them have past issues they need to work through as well.

Enter art therapy for autism. When thoughts and feelings cannot be discussed verbally, art therapy works wonders. It helps to stimulate imagination, regulate sensory issues, encourage hand-eye coordination, and express emotions (including stress). Other long-term benefits include developmental growth, recreation, and self-expression. But there can even be profound benefits from just a single session of art therapy. I witnessed this last night with my autistic son.

Ten months ago, I removed Nigel from the middle school where he had been mainstreamed. He had endured daily bullying, both physical and verbal (and, of course, emotional). This put him in a constant state of anxiety and agitation, making him unable to focus and learn, unable even to function. Soon after removing him from that environment, he became much calmer and was able to focus while being homeschooled. On a weekly basis, even though months have gone by since he attended that school, he mentions how much bullying angers him or mentions something in general about bullies. I’ve always assured him that he wouldn’t have to deal with that anymore. But what I didn’t realize was that Nigel had not yet worked through the trauma of his ordeal. He couldn’t really talk about it, other than his occasional comments, and that wasn’t enough. The memories were still painful for him.

Then last night Nigel brought out his yearbook. He showed my boyfriend a picture of a girl he liked, and my boyfriend joked about how he used to draw moustaches on yearbook photos. Nigel laughed and went back to his room. He came out an hour or so later with a Calvin and Hobbes book and showed us a series of cartoons about Calvin’s bully, Moe. In one cartoon, Calvin mimics an ape as he quietly walks behind Moe. Nigel couldn’t stop laughing at the cartoon. He went back to his room and came out a few minutes later with his yearbook, showing us how he had used a ballpoint pen to make the face of his worst bully into an ape face. He laughed some more and went back to his room, where he proceeded to laugh non-stop for over an hour. Finally, his laughter subsided, and I went to him to suggest that he get some sleep. He proudly showed me his yearbook. Each page of every grade level had several ape faces drawn over the bullies, both boys and girls, who had tormented him. I fought back tears and didn’t want to count how many faces he had drawn on; there were many. I couldn’t bear to think of how horrible it really had been for my son, day after day. I’ve always known that the decision to homeschool him was the right one, but now I had validation. And it sickened and angered me.

But Nigel had found a way to work through his anger. He devised his own art therapy. He scribbled out his anger while eliminating the bullies’ facial features, and then he laughed while adding humiliating details like hairy necks and stupid grins. And he felt better. As I said good night to him, he told me, “Now I can sleep without thinking about the bullies.”

I’ll try to do the same.

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.   

Even before fifth grade had ended, when we had Nigel’s IEP meeting prior to the start of middle school, I had serious doubts. He would go from having had a full-time educational assistant in one classroom to navigating six classes without an assistant. How could he possibly have any hope of success?

I actually had very few concerns about Nigel being able to make it to his classes - he loved schedules and could easily follow maps. Getting used to a locker would be no problem - he loved mechanical stuff like that. What I worried about was how all the kids who didn’t know him would respond to him. I worried about how there would be no assistant to model positive interaction with peers, and to intervene when things went negative.

Nigel was never late to class, which astounds me considering what he had to endure, day after day. With no educational assistant around, the bullies had a field day. The worst of it was in math class, which was difficult enough for him without having kids make faces at him and hiss his name, which they discovered produced the response they obviously wanted. The hissing was hard on Nigel’s ears, distracting, and demoralizing. The faces enraged him, and he could not control his reactions. Of course, the kids only did this when the teacher’s back was turned, so there was no evidence against them. Only against Nigel, who was trying to get them to stop. But they would continue their attack as he walked to his next class, walking close behind him, hissing in his ear, calling him a “freak,” and I don’t know what else, since that’s all Nigel would tell me. Some of the boys were also in his Language Arts class, and they tormented him there, too. How much fun they must have had riling up the autistic kid, making him lash out so that he would then get in trouble.

Again, as in elementary school, I contacted the teacher (this time two). They said that they were unaware that it was going on, so they would have to bring in an aid or student teacher to watch the kids who were doing it and catch them. Wasn’t Nigel’s word enough? Wasn’t my word as a parent enough? Nigel’s rights as a student and a person were being violated, but it wouldn’t be “fair” to confront his attackers without an adult witness? I tried to suppress my anger and just work with the flawed system that protects the wrong kids.

Within days the aid had witnessed the bullying behavior while the teacher’s back was turned. That teacher notified the math teacher, and the bullies were lectured and told to write letters of apology to Nigel. And the hallway attacks abated, for a time. But they resumed within a few weeks, along with other issues.

That’s part of Nigel’s statement when he tells people that he’s being homeschooled. “I’m doing homeschool because of bully problems.”

When he was seven, I witnessed a neighbor boy call Nigel a “retard,” as I have written about previously. It’s possible that there may have been some of that going on at school as well, but to the best of my knowledge, and from what I was able to extract from him at the time, most of the bullying started in fourth grade. I don’t remember how it came up, but we were sitting around the dinner table, that hallowed place of family meetings, and he mentioned something about a kid spitting on his jacket. He didn’t want to tell me about it, he said, because he didn’t want me to worry. But I was able to drag out of him that two kids in his class had been cornering him at lunch and spitting on him. And Mama Bear was pissed.

I called his teacher and told her about it, and she assured me that she would have an aid watch them at lunch. Six weeks later, I noticed that Nigel had been pulling out his hair, so I asked him if the kids were still bothering him. He said yes. I immediately contacted the teacher, this time mentioning that I would call the boys’ parents if this wasn’t resolved quickly. The teacher told me that she would personally make sure it wouldn’t happen again. About two months went by, with me blithely assuming that surely now everything would be okay. Then I noticed another one of Nigel’s old stress indicators: severely chapped lips and mouth. He confirmed that he was still being bullied.

At that point I was so angry I was ready to take the school to court. This is discrimination against someone with a disability. My blood was boiling. I asked the teacher to set up a meeting with the principal and both of those boys’ parents. This ends now, I said. The teacher convinced me that she should have a meeting with the boys’ parents first, since they had not yet been notified, and after I calmed down, I conceded. I must have finally gotten my point across, because two weeks later when I asked Nigel if the boys were still bullying him, he said no. He said that the boys had apologized to him and that they were now “friends.”

Well, I guess a state of forced “friends” is better than ritual bullying. It just burned me to know that I had to throw my “Mama Bear” weight around to have them take me seriously. I shouldn’t have had to resort to threatening with litigation. Aside from the bullying issue, both of my kids did really well at that elementary school, and most of the teachers really cared about them. But I would have done whatever was necessary to get that situation resolved. I think they realized that, and that’s why, as far as I know, there were no more bullying issues the remainder of the time (one year) that Nigel attended that school.

Unfortunately, middle school was much worse.

Every few years I undergo a relatively drastic hairstyle change. Sometimes it is circumstantial: I am experiencing major changes in some other area of my life, and my hairstyle change is symbolic of that. At other times it’s because my hair is down to my lower back, and it’s just too much work at that length! Off with it!

Last week my hair was reaching beyond the middle of my back, the sun was out, and I had it cut. I think this time it was as much because it was too long as it was a metaphor for the changes going on in my life. I came to the realization a few months ago that Nigel can no longer be mainstreamed, as he was (with an extensive support system) for four years. I radically altered my life, my schedule, my finances, and my ideas so that I could wrap my mind around the concept of homeschooling him, and found ways to make it happen. (I plan to write about that subject in detail for a future post.) And now I am doing it. I drastically cut back on my hours in the office at my job, I found some work I can do from home, and I am now my son’s teacher.

It was a huge change, and I am still reeling from it, even though it is positive. It is scary financially, since I am a single parent. And it comes with so many other adjustments that must be made: emotional, physical, social. So when I’m at the hair salon, and the other patrons and stylists who witness my middle-of-the-back hair being cut into a chin-length shattered bob comment on how brave I am to do that, I say It’s only hair.

Getting my hair cut short doesn’t make me brave. Being a single parent? Sometimes brave. Raising a child with autism? Usually. Homeschooling my autistic son while being a single parent? Reducing my work hours from 30 hours a week to 6, thus reducing my income?

And then I think of Nigel, trying to navigate middle school without any support system in place (how could I have let the IEP ‘team’ convince me that he would be fine with that?!) and dealing with the constant harassment and bullying he experienced, just trying to get through his day, pulling out his hair because of the eternal state of anxiety he was in, and I know. He is the brave one. He was brave to make that first leap to try to learn to talk by repeating lines from videos, trying to fit the lines within the context of the real situation. He was brave to learn how to filter all the mechanical sounds that were agonizing to him. He was brave to want to take the regular school bus, because he wanted “to be like everybody else.” That’s all he wanted, and they treated him so terribly. Yet he went back, every day, and he always tried so hard. Finally, he reached his limit, and he begged me to homeschool him. That was brave too.

Maybe the little things like getting my hair cut short are brave. But when you live with autism, it puts a different perspective on things. And it makes you define bravery in a whole new way.