In retrospect, the bullying started at a very young age. Even when my oldest son was in preschool, other students would avoid him, not because he was mean or aggressive but because he was impulsive, unpredictable, and got stuck on topics that didn’t interest them. Luckily, very young children have short memories and one bad day would be quickly forgotten.
By age five, problems started in earnest and a classmate (ironically, a boy named Power) was actively deriding my son, encouraging other children to exclude him and generally making life miserable. It would be several years before Michael would be correctly diagnosed with Asperger’s syndrome (AS). Who knows at what age, or even if, Power would be “diagnosed” as a bully?
In 1999, Asperger’s wasn’t on the radar for most practitioners, so my son was given the incorrect label of attention-deficit hyperactivity disorder (ADHD), which I call the “wastebasket diagnosis” of the 1990s. That fall, I placed Michael in a five-year-old transition program for children who weren’t ready for Kindergarten at a local church-based preschool. It soon became apparent his teachers were at a loss for how to deal with him. They blamed him (and me) for his frustrating behaviors, and when Power was mean they simply viewed it as harmless taunting. One day, Power told Michael he wished he would move to Ohio and live with his grandparents. It upset him, so I went to the teachers for help. They laughed, as did the preschool director. “That Power,” they said, “he’s such a card!” I withdrew Michael from the school when I was told, “Either medicate him, or don’t come back.”
There are many experiences, even some that were very upsetting at the time, I can look back at with a sense of humor, but this isn’t one of them. Bullying is anything but a laughing matter and the short and long term consequences of being a victim are serious—sometimes even life-threatening. Studies show children who are bullied often perceive themselves as victims into adulthood, powerless to change their situation. This results in low self-esteem, problems in relationships and on the job, and tragically, even suicide.
Research tells us that children with disabilities are two to three times more likely to be bullied than their non-disabled peers. Children on the spectrum are even more vulnerable. In a 2009 survey conducted by Massachusetts Advocates for Children, 88 percent of parents of children on the spectrum reported bullying, and in nearly 40 percent of these cases, the child was victimized for more than a year. This statistic is even more sobering when you consider bullying often goes unreported by a child who fears that getting adults involved will only make matters worse (which, sadly, is sometimes the case).
According to a 2009 article in Issues in Comprehensive Pediatric Nursing, 47 percent of parents reported their children with autism had been hit by peers or siblings, 65 percent said their children with AS had been victimized by peers in some way, and 50 percent reported their children were being scared by their peers.
The serious consequences of bullying have become the focus of national attention due to high-profile cases resulting in suicide. In these cases, the victimized students were gay. In response, the White House held a bullying summit in March of last year. At the summit, President Obama underscored the importance of bullying prevention, saying, “If there’s one goal of this conference, it’s to dispel the myth that bullying is just a harmless rite of passage or an inevitable part of growing up. It’s not.”
This was a step in the right direction, but like most White House summits, it consisted mainly of stakeholders gathering to express concern, folks hand-wringing and, at the end of the day, a chorus of kum-ba-yah that does little to change outcomes. The hard work ahead involves changing attitudes in classrooms, playgrounds and soccer fields across America and internationally too. And children’s attitudes are not the only ones that need changing.
It’s important to understand what bullying is to effectively address the problem. Bullying is defined as aggressive or unwanted behavior between individuals characterized by an imbalance of power. A key feature is that victims feel unable to defend themselves.
It can involve physical aggression, but often involves verbal taunting, exclusion, and exploiting children through technology via text or social networking sites. Conditional friendship—where a child sometimes acts like they are a good friend to your child, and other times treats him or her badly—is also common. One mother told me of her sixth-grade son with pervasive developmental disorder-not otherwise specified (PDD-NOS), “He has a friend who will play with him at our home, but the boy makes fun of him at school. It’s heartbreaking and he doesn’t understand it.”
Whatever your perception of what constitutes bullying, it’s important that you read your school district’s Student Code of Conduct for their definition. These are the criteria that will be used when determining whether a situation is considered “bullying” in your particular district. Because bullying a child with a disability can be construed as a civil rights violation (especially when features of their disability are used to exploit them), any paper trail documenting the situation may or may not use the term “bullying.”
Why are children with autism such frequent targets? Even among children with disabilities, research shows they are disproportionately victimized. Experts cite poor frustration tolerance common in children on the spectrum, making it easy to “get a rise” out of them (a favorite outcome for bullies). Also at play are social skills deficits, motor skills impairments that might set them apart from their peers in athletics, and sensory issues that might affect the way they dress or behave. For instance, many children with autism prefer to wear only clothing with elastic waistbands, such as jogging suits. If jogging suits aren’t the social equivalent of a “uniform” at your child’s middle school, it may be enough to make them stand out as different.
How will you know if your child is being bullied? Often, children don’t tell adults they are being bullied. Kids on the spectrum may have limited speech or might not actually realize they are being victimized. As with so many other aspects of autism, it’s up to parents to remain alert so that they can detect problems early (see sidebar, at right, for possible red flags).
Who are the players in the bullying scenario? There’s the bully, the victim, and peers (who in bullying research parlance are referred to as “bystanders.”) Bystanders might be sympathetic with the bully, providing support and an appreciative audience, they might side with the victim, or they might be ambivalent. There are also many adults, including teachers, administrators, counselors, school board trustees, legislators and policy makers who all play a role in preventing—or perpetuating—bullying.
Note that the bully and victim normally number only two, while a host of other individuals can intervene to make a positive difference. Generally, the closer a person is to the situation, the more influence they can have to make matters better, which means the bystanders are vital to any effective anti-bullying strategies.
A quick internet search will reveal many anti-bullying programs, many of which, for a fee, your school district can implement. Before your school district invests time and money in a program, parents should ask questions to ensure the strategies have proven effective. The New Jersey Coalition for Bullying Awareness and Prevention cites zero tolerance policies, isolated efforts such as special assemblies, focusing only on physical aggression, accepting the bullying as a normal rite of passage, and individual counseling for the bullying or victim, as ineffective.
Effective strategies involve a more fundamental climate change to create a culture of respect for all differences. Creating safe ways to confidentially report bullying, involving bystanders, using peer support networks and active parent involvement are key to successful intervention. Often overlooked, but common sense, is the responsibility of adults in the situation to model positive supportive relationships rather than using intimidation, power or fear.
Creating a culture of respect in schools (or other environments for that matter) doesn’t happen overnight. Some schools have been successful in decreasing bullying referrals by implementing Social Emotional Learning (SEL) curricula which include teaching critical skills such as understanding others’ perspectives, accepting differences, resolving conflicts and analyzing self-behavior, to see how it affects others. Rather than relying on an annual anti-bullying assembly and a few posters strategically hung in the hallways, SELs ensure issues of character and relationship development take on the same importance as reading, writing and arithmetic. It’s not just an awareness campaign; it’s a fundamental paradigm shift.
Make It Personal
Unfortunately, statistics indicate it is highly likely your child on the spectrum will encounter some problems with bullying, so it’s important to be aware of strategies you can use to help avoid that scenario.
Bring up any bullying concerns in your child’s individualized education plan (IEP) meeting, especially if he or she is entering middle school, when bullying problems peak, or if bullying has been a problem in the past. Let the team know you want to avoid your child being victimized.
Schedule a trip to the campus a week or two in advance, and document it in your child’s Individualized Education Plan (IEP). It’s also a good idea to develop a student introduction portfolio for anyone who will be working with your child. A good portfolio is short (it should take no more than 10 minutes to read), includes photos of your child doing things he or she enjoys outside of school, contains important information such as triggers that affect behavior; and, most of all, includes a statement of vision for your child’s future. The purpose of the portfolio is to “make it personal.” The inch-thick stack of papers comprising your child’s IEP contains goals that translate into work, but IEPs are written in impersonal “special education-ese,” and therefore don’t convey your child’s gifts and challenges in an inspiring way. It’s true that IDEA legislation drives your child’s rights to supports and services, but it helps to remind educators that your child is a person first, not an educational label.
Bullying is more likely to occur in unstructured situations, such as in the cafeteria or during PE, so be sure to include lunchroom monitors, campus security guards, coaches and anyone else who will interact with your child when you distribute your student portfolio.
As soon as your child is old enough (possibly beginning in middle school but use your judgment), have them attend an IEP meeting, if only for a few minutes, to introduce them to the team. This reminds everyone to maintain a child-centered approach and to leave petty conflicts at the door.
As already stated, any accommodations your child will need should be documented in the IEP. Peer supports (whether you’re requesting that a student accompany your child between classes or a peer buddy on the playground) are no exception. Inform administrators who hesitate to involve other children that peer support is crucial and don’t accept “we can’t do that” as a response. It’s not cool for a child to have an adult do all the intervening, and you want your child to learn to deal with peers with as little adult support as necessary. Social skills and self-advocacy goals should be included in the IEP. Be sure that goals are measurable, and that data is collected to determine if skills are being mastered.
Monitor the Situation
Visit your child’s school and observe how they interact, particularly in unstructured situations (this might be most easily accomplished in the cafeteria). It’s a good idea to be involved as a volunteer so that you have a reason to be on campus. Some schools restrict visits, but persist in finding a way that is acceptable to both parties so that you can see for yourself what is happening. Talk to your child often and ask questions such as, “Do your friends have special names for you?”, “Who do you sit with at lunch?”, “Which friends do you talk to during the day?”, “What’s your least favorite class and why?”
Keep communication lines open with teachers. Most teachers in our school district prefer email to phone calls, which is preferable because then you have a paper trail of your correspondence. You can ask for data on how your child is progressing on IEP goals related to social skills and self advocacy, which can open the door to conversations about how your child is doing relative to any bullying.
If possible, ask other students about your child and if they have observed any problems. I recently spoke with a 14-year old friend of my middle son, who said she had observed a boy with PDD-NOS eating alone at lunch every day while students around him taunted him and sometimes threw food at him. When I asked her why she didn’t tell an adult, I got a blank stare. As adults, we don’t realize that some kids just aren’t thinking things through and don’t realize the gravity of the situation or how they can help. There are many nurturing young souls out there, but they still need guidance.
When Things aren’t Working
If bullying is a problem, use the same complaint process that guides you for other situations. If your child is receiving services through special education or Section 504, read your procedural safeguards. Generally speaking, try informal resolutions first with case managers, teachers and counselors. Document all communication in writing or email. If you end up suing your school district, you’ll need to prove deliberate indifference on their part which will require supporting evidence that you’ve tried repeatedly in good faith to inform them of the problem.
If matters don’t resolve, you can call for an IEP meeting or if needed, use your formal resolution process which might involve filing a grievance or complaint, or pursuing due process. Avoid becoming overly emotional but be persistent. Emphasize that your child cannot make educational progress if they are being bullied. You may want to contact the Office of Civil Rights for guidance on whether the situation constitutes harassment, which can carry stiffer penalties and motivate school districts who’ve been slow to act.
A parent or caregiver holds the unenviable position of balancing the urge to place their child in a “soft cotton box” protecting them from any negative experiences, with the need to protect them from undue exploitation and harm. Remember, bullying is common among all kids, so this isn’t just a disability issue. But just because something is common doesn’t make it right. Your efforts to create safe learning environments for your child will likely benefit many others and your child will forever remember the efforts you make on his behalf.