Growing Up on the Spectrum

by Lynn Kern Koegel

  Lurk Around

  If your child doesn’t have the communicative ability or desire to confide in you, and you have a feeling something isn’t right, it’s time to do some lurking. You can usually find excuses to quietly stand nearby during any afterschool activities, and you can enlist someone already at the school to lurk during school hours. Special education staff at the school are trained to observe and can do so discreetly. We have even gotten more staff placed near our students during specific times that tended to be a problem, such as phys ed classes or lunchtime. You may want to request that your child’s school counselor, a teacher, or a special education staff member regularly and periodically spend a few minutes with your child to ask her how she’s being treated by her peers. And if you put it in the IEP and get regular reports, you won’t have to worry about busy and overworked school staff forgetting to check. This doesn’t have to be a negative thing—they can start by talking about kids and activities your child enjoys then move on to any “challenges.” This regular checking in could make a difference for your child.

  Help Your Child Find an Adult at School to Confide In

  You want your child to be comfortable confiding in someone if any kind of aggression occurs at any time or place during his day. Teachers can be a great resource when it comes to bullying or harassment. Have a talk with your child about which teachers he feels he can trust and would be willing to confide in if something’s worrying him. His first choice may not be his current homeroom teacher or adviser, which is fine. You might want to schedule a parent-teacher conference for yourself if you have concerns. Sometimes confiding in a popular or vigilant teacher can be more productive than trying to handle it all yourself (more on this below).

  Many teachers are great about trying to solve social problems, but often the problems need to be brought to their attention. When my oldest daughter was in middle school, she told me she needed a new binder. Then the next week she said the same thing. Finally, on the third binder I started asking questions. Turned out that a boy in one of her classes was ripping up her binders. Unbeknownst to my daughter, I called the teacher and let him know that I was getting tired of buying new binders every week. He was really smart and helpful: he told me that although he was glad that I had brought the matter to his attention, middle schoolers don’t like parents talking to their teachers about peer issues. He also said that this particular boy seemed to be smitten with my daughter and the teacher assumed that he was doing it to get her attention (although she wasn’t taking it that way at all). So he said that he would let the student know that he had observed him bothering her and he wanted it to stop. Sure enough, the binders always came home in great shape after that, and thanks to that teacher, I didn’t have to get involved, which would have been even more embarrassing for my daughter.

  Teach Your Child How to Stand Up to Bullies

  Research tells us that the kids who stand up to bullies get bullied less in the future. If possible, teach your child to stand up for himself. It may not be a good idea in situations where the kids are physical—we don’t want our kids fighting—but they should know how to say, “That’s mean. Cut it out!” To get your child comfortable with this response, you may have to prime him. Have him practice ways of responding that are firm and assertive. Remind him that the bully is trying to be secretive and if your child’s loud enough, it will draw attention. If your child lets you know that he’s being bullied, you can have him practice at home. Prime him as to how to respond, then remind him right before you drop him off at school.

  Insist on Accommodations for Your Child

  If you discover that your child is being bullied in any way, insist that the school make accommodations. If the bullying is occurring between classes, have the school assign a child to accompany her from one class to the next. If it’s happening at lunch, the school should assign an extra adult to yard duty, with the sole goal of watching for bullies. If it’s happening during class, make sure the teacher provides preferential seating for your child and keeps an eye out for bullying. If you can be specific about when and where it’s happening, it will be much easier for the school to make accommodations. If you need to, call an emergency IEP and get it written in. The school staff will usually make this a top priority, since no one wants your child to be hurt in any way.

  Find Safety in Numbers

  If you can figure out when the bully is getting a chance to harass your child, you can have the school arrange for extra support at that particular time. I worked with one middle school boy who was being bullied in the boys’ locker room. The school arranged to have a support person there to make sure he wasn’t a victim any longer. Another girl I worked with was being teased while she walked home from school, so her parents hired a local high school student to walk her home. The schools can also take responsibility for getting a peer to walk with your child to the lunchroom, between classes, and to the bus stop, and you can even put it in your child’s IEP. (See below for more on recruiting peers to help.) We’ve also had situations when an aide was assigned to ride the bus with a child because of bullying on the bus. So take advantage of the power of numbers if that will help your child stay safe and happy.

  Insist That the School Increase Its Monitoring

  Kids don’t bully when adults are around. Most kids bully to fit in and be “cool,” so they’ll do it in front of peers who they think will approve, but not with disapproving adults around. So schools that have a lot of adults cruising the halls and walking around at lunch tend to have fewer problems with bullying. And parents can be a big help here. Since school staff time is limited, you and your friends can volunteer at lunch or between classes to simply walk around. Just your presence will reduce many problems. And you’ll get to know a whole lot of really nice kids.

  Recruit a Peer Buddy

  I have never been to a middle school, high school, or college where I couldn’t easily recruit peers to help a child. Sometimes the students are a little reluctant to volunteer in front of a big group, but if you have interested volunteers write their names on a piece of paper, or if you give them an opportunity to meet with you after the group situation, you’ll find plenty of eager recruits to help in the halls. In middle and high school, I always suggest that the peer buddy be given a hall pass to get to her own class a little late, if necessary. If you’re trying to recruit peers for lunchtime, make sure to get a peer clique. This technique has been more effective than recruiting just one peer.

  Ask the School to Set Up Safe Places

  You’ve heard the expression “Idle hands are the devil’s playground.” Bullying doesn’t happen when there is supervision or when the kids are engaged. It happens between classes, at lunch, during breaks, after school, and other times when you’ve got a group of kids with nothing to do and very little supervision.

  Many middle and high schools have clubs at lunchtime, and encouraging your child to participate in these clubs will help keep him busy and safe. A middle school I consulted with in Los Angeles had a game room with dozens of different games and plenty of adult supervision. That room was a great safe haven for kids who preferred some structure at lunch. Another middle school child I worked with helped out as a teacher’s aide every lunch period. That kept him safe and gave him some responsibility that also made him feel good about himself. One other high school girl I worked with helped in the library at lunchtime. This gave her an opportunity to be around books—which she loved—and at the same time learn some library work skills. Again, keeping the kids busy limits the amount of time they have to drum up some type of mean or obnoxious behaviors to pull on unsuspecting classmates and can engage them all in fun activities.

  Make Sure the Entire School Is Aware of What’s Going On, from Top to Bottom

  If bullying is occurring, it needs to be brought to the administration’s attention, no matter how small or insignificant it may seem. Big problems usually start out as little problems and build up gradually, so you want to end the behavior early on
. Usually we start with our child’s teacher, but if that isn’t helping, it’s time to meet with the principal.

  There are schools that have fewer incidents of bullying, and that isn’t an accident. They generally have active programs to decrease bullying and these programs usually are put in place by the principal. If the principal isn’t taking effective action, go to the school board. You’ll be helping out a lot of innocent kids.

  Sometimes the problem is simply that kids don’t really understand how hurtful bullying can be and other times the kids bully just to try to fit in, so a school-sanctioned group discussion of the repercussions of bullying can be helpful. Some schools will address the issue in a school assembly. Sometimes a popular teacher will address the issue with her students in class.

  Bullying by “Friends”

  Recently I got a call from a mom whose high schooler was the victim of a different kind of bullying. It wasn’t aggression or theft; instead, the child’s classmates were encouraging him to do inappropriate things. One particular child was the instigator, but a whole group of kids would watch the young man on the spectrum engage in these inappropriate things for some sort of immature entertainment. For example, they told him that a girl was wearing a new perfume and wanted him to smell it. Unknowingly, he innocently went up to the girl and sniffed behind her ear. Another time they told him that one of the girls just washed her hair and wanted him to feel how soft it was. Again, he approached her and touched her hair. He didn’t fully understand that not only was what he was doing inappropriate, but he was also the butt of a childish joke.

  The best way to take care of a situation like this is to first try to make sure that your child has his own sense of what’s right or wrong and can therefore resist bad suggestions. You should have daily conversations with your child about personal space, how to distinguish between appropriate and inappropriate behaviors, and the difference between laughing with people and having them laugh at you.

  It’s also important to take a comprehensive approach and talk to the peers about their own behavior. I recently had a child’s mom call Anjie, the parent of a young man with autism. This parent of the typical high schooler told Anjie that her own son was deeply disturbed that one of their peers had been getting Anjie’s son to engage in inappropriate behaviors, like stealing food from the cafeteria and starting food fights. Since Anjie’s son liked the peer attention, and didn’t fully understand that what he was doing was inappropriate, he just kept doing it. The young man who had observed all this didn’t have the courage to stand up for him at school but was bothered enough to tell his mother, who was willing to step forward. With this information, Anjie was able to approach the school, and the school then took actions to decrease this problem. They had some discussions in class with the kids who were misbehaving, and they provided more staff at the problematic times. They also regularly discussed the rules and how to treat others as a reminder of what was expected. Things quickly improved.

  CLAIRE

  Make sure when you discuss bullying with your child that she understands that a bully doesn’t always wear a scowl and stomp around looking mean. One sweet kid I know was being menaced on a regular basis by a couple of kids in his class—actually being led every recess to a secluded corner of the schoolyard where he was forcibly restrained and repeatedly hit and choked. But they always said to him it was a game and that as their “ friend” he should be willing to go along with the “fun.” He was so confused—and of course scared—that he never told anyone what was happening. The truth only came out when a little girl in the class saw one of the classmates strangling him and threatened to tell.

  A lot of factors contributed to this bullying going on much longer than it should have—the lack of supervision in the yard, the fact that the teacher missed the signs (our friend came in from recess crying one day but made up some excuse, and the teacher didn’t pursue it), the fact that he felt outnumbered—but the main thing that struck me in this case was that in the past he had been friends with one of the boys, and that earlier friendship made it difficult for him to recognize that this was a bullying situation he needed to tell adults about.

  In movies and books, the bully’s a big, tough kid with clenched fists who spouts four-letter words while his equally large cohorts egg him on. In real life, a bully can be the kid sitting next to you quietly all day long in the classroom who came to your birthday party that year and invited you to his, but who mocks you savagely when no adults are around and encourages other kids to make fun of you. Kids on the spectrum who tend to see things very literally may only picture the classic figure when you talk about bullies, so make sure they know that someone who seems friendly can still be abusive and need to be stopped.

  DR. KOEGEL

  What If Your Child Is the One Behaving Badly?

  Peers have more influence as they get older, and many children with social difficulties will do anything to fit in, including taking dares and risks just for attention. You may not feel you have as much control as you once did, but there are still things you can do to help and support your child.

  If you’re concerned about your child’s susceptibility to bad influences, try as hard as you can to permit him to hang out only with peers who will be good influences. If that means you are too “busy” to drive your child to a troublemaker’s house on the weekend, so be it. Make every effort to encourage your child to get together with kids you trust and stay away from the ones whose behavior worries you.

  If your child has behavior problems, you must do a functional analysis (see Section I, Chapter 2 for a detailed description of functional analysis), even in middle school, high school, college, or beyond. You will need to figure out what’s happening before the problem behavior to identify any likely triggers, and what’s happening afterward to identify any inadvertent reinforcers, and then hypothesize as to why it’s occurring. As with a younger child, you will probably need to replace the problem behaviors with appropriate ones.

  The complicating factor at this age is that the peers may be reinforcing the behaviors. In fact, you may well find that your child is getting attention from his peers by breaking the school rules—it’s a classic problem for our kids in middle and high school. If that’s the case, it’s time to talk with the school staff to have them help you figure out ways your child might be able to get peer attention in a positive way. Can he make morning announcements over the PA system? Can he take roll in a class? Can he tutor? Can he be the president of a club developed around his interests? Your job is to figure out how to replace those problematic attention-seeking behaviors with appropriate ones.

  A step further is to recruit peers to actively help reduce the bullying. Constantly reminding kids of positive behaviors and what’s expected of them before there is a problem reduces future problems. It’s best to have teachers work this into their daily routines. Before each nutrition break, the teachers can spend just a minute or so talking about how to treat other people. Just before lunch period, they can talk to their classes about appropriate lunch behavior and how to treat others on the playground. Schools can work good citizenship into their award systems and announce that they will be looking for acts of kindness. Again, it needs to be a schoolwide movement to keep kids safe and content.

  One teenager we knew was getting into trouble at school for starting food fights. Myles loved attention—any type of attention—especially if it came from his peers, and he had discovered that throwing food, which usually got other kids to throw food too, would lead to cheers and lots of attention. So he did that a lot. After just about every incident, Myles got sent to the principal. Unfortunately, a functional analysis revealed that the immediate consequence for throwing food was all positive: first he got peer attention and then he got special attention from the principal! (The adults viewed sending him to the office as punishment, but since Myles liked any attention, the visits to the principal were actually reinforcing the bad behavior.) We went to talk to the principal and she agreed not
to give him any attention when he came to her office. All he could do was sit there, and that alone greatly decreased his desire to throw food. At the same time, we had to teach him appropriate ways of getting peer attention. Bringing games, like cards, out to the lunch table helped to get him engaged in a positive way. Myles’s mom packed extra snacks and put some interesting and cool little things in his lunch bag to share or prompt him to start a conversation. We also worked on having him chat with his friends rather than engaging in disruptive behaviors: we taught him to comment and ask questions. And seating him closer to the lunch monitor was also helpful. In short, we approached the problem from all angles at once, which quickly reduced his desire to get attention in a negative way.

  ANDREW

  I don’t remember really being bullied a lot of the time, however, I have definitely been teased when I was in middle school and in high school. Kids would tease me about how they thought I was “retarded,” short, or how I seemed a lot like a younger kid. Most times, whenever kids were mean, I would just try to ignore them. Sometimes, it has been hard for me to ignore them, so instead I would talk back to them. When I talked back to other kids, they just started making fun of me even more and the situation only got worse. Other times, I was smart and went and told a school counselor about it. Not only have I been made fun of by other kids at my school, but other kids in public.

  I remember a lot of the incidents really well. There was one time, at the beginning of my ninth grade year, when I was with a friend eating at a Japanese restaurant. There were two older boys next to us who just suddenly started laughing at me. I accidentally said a curse word out loud in that restaurant when talking to my friend, but just did not know any better, so they said they thought that I was “mentally retarded” and started pointing and laughing at me for it. I did not know them at all. There was an incident, another time in ninth grade, when I was playing a game in my Spanish class. It was my turn to roll the dice. Other kids in my class acted like I did not know how to roll dice, so they started making fun of me. They were lecturing me on how to do it, but rudely. That incident made me feel really bad about myself. Also, back when I was in middle school, when I was really thirteen or fourteen, the other kids thought that I looked like I was ten. So every day in eighth grade, they called me “little kid,” and whenever I told them I actually developed a mustache (when I really did), they did not believe me.