Like so many other aspects of growing up, bullying is a “typical” challenge this has unique dimensions for children with autistic spectrum disorders (ASD) and their caregivers. Due to a number of high-profile cases in the news and the expansion of bullying into the realm of social media, bullying is getting a lot of media attention and as a result, is now appropriately recognized as a public health issue.
An explosion of research on bullying has identified far-reaching impacts not only on victims and perpetrators, but bystanders as well. Bullying is no longer considered socially normative or tolerable, as it once was. The consequences are too dire and far reaching. Victims experience the direct effects of fear, embarrassment, and vulnerability that can impact social and emotional development and impede learning. Furthermore, children with limited communication skills are at risk of expressing the associated distress in potentially harmful ways including self-injury, escape behaviors (running away from individual or situations) and aggression directed at caregivers. Children who observe bullying and parents who feel helpless to protect their children can experience an erosion of their sense of safety.
Bullying as defined by the Center for Disease Control (CDC) is “an attack or intimidation with the intention to cause fear, distress or harm. It can consist of physical, verbal or emotional/relational attacks (rumors, social exclusion). “(CDC, NCIPC. 2011) Bullying can result in social isolation, emotional distress, and physical injury. For those who internalize shame or other negative feelings about themselves, bullying can result in death as it may drive some children to act on suicidal thoughts. Research is clear though that even before it gets to the extreme, a high level of distress and impairment results. It makes intuitive sense, and research has demonstrated, that children who are victims of bullying have an increased rate of behavioral, psychiatric (depression and anxiety) and somatic symptoms and have more difficulty adjusting to school. (CDC, NCIPC. 2011)
Bullying and ASD
Parents of children with autism are more acutely aware of bullying than most parents and for good reason. A recent study by the Autism Interactive Network (AIN) found that between 42% and 49% of children with ASD has been bullied in the past month. When asked if they were “ever bullied” the number increases to 63%. While bullying in middles school is very common, this number is quite a bit higher than rates reported for the general population of middle school students, where the highest rates of bullying are seen. A study, looking at rates of bullying in ASD versus unaffected siblings, found that children with ASD are 3 times more likely to experience bullying than their siblings.
While this is unfortunate, it is not hard to imagine. Children with medical and developmental issues are more likely to experience bullying and social exclusion. (Nansel et al. JAMA. 2001. ) Given the “invisible” nature of autism, especially higher-functioning forms (Asperger Syndrome), and the characteristic social deficits that impact the ability to read social situations and recognize malicious intent or exploitation, children with ASD are easy targets. Once they are singled out, a lack of self-efficacy (inability to stand up for themselves, lack of confidence) and low tipping point for frustration make it a situation ripe for exploitation. While “mainstreaming” can provide an opportunity to improve social skills and form protective friendships and alliances, it can also increase social demands and with it, the frequency of vulnerable situations. Certainly the reverse can be true as well depending on the mix of students, as designated special needs classrooms often lump together children with ASD and those with externalizing and anti-social behaviors, metaphorically throwing the sheep in with the wolves.
One commonality across the spectrum is some degree of social marginalization whether due to lack of ability, interest or awareness. Social exclusion is a risk factor for being bullied but can itself be a form of bullying. Children with ASD are understandably more vulnerable to marginalization and struggle with the most mundane interactions. Eating alone, not being picked (or being picked last for teams) or not being invited to birthday parties are not uncommon experiences for children with ASD. These experiences can further erode self-confidence and self-efficacy and signal vulnerability to others. Further increasing the opportunities to be bullied are failed efforts to be included that may lead to a higher tolerance for being treated poorly (in exchange for acceptance) and negative attention.
Among typically developing children, it is not uncommon for bullying to go unreported. Understandably, kids are often reluctant let parent or teachers know what is going on due to embarrassment or fear of retaliation or further social stigmatization. Identifying bullying is challenging without the added complexity of an ASD. Not surprisingly, impaired communication related to ASDs impacts reporting.
Often bullying is recognized through indirect signs of distress or anxiety (school avoidance, physical complaints, aggression or acting out at home, regression, sleep problems) and at other times, more obvious signs (lost or broken possessions, bruises). In addition to the obvious issue of not being able to identify the who, when and what, an inability to attribute motive or understand nuances of social interactions may make kids with ASD more susceptible to situations where they are being “set-up” or groomed (for bullying.)
Conversely, children with ASD may misunderstand normal teasing and misattribute malicious intent. The latter can lead to strong reactions or meltdowns when no bullying was occurring. This can lead to further social isolation as other kids become wary of trying to include reactive classmates in typical activities that can provide feelings of inclusion and belonging. Finally, in some children who have the social awareness but lack confidence or success, they may simply accept their role as “target” and prefer it to isolation. This can contribute to emotional and psychological issues down the road.
What to look for
For children with ASD, parental suspicion and astuteness around behavioral or functional changes are crucial to identifying bullying. Regression in the form of resistance to bedtime on school nights or the typical morning routine may represent apprehension or fear now associated with previously non-problematic situations. Obviously any marks, bruises or physical signs that suggest rough behavior out of the norm should be explored. Even for those who are verbal or able to communicate by other means, just as with children without ASD, victims are often ashamed and will not bring it up until things get pretty bad. Bullying behaviors can be normalized to a pretty remarkable degree both within an individual and within a clique, so you may need to remind kids that what they are experiencing as their norm, is not normal or okay. Observable changes in behavior that should prompt you to consider bullying include less participation in preferred/pleasurable activities, more withdrawn or isolating behavior, aggression directed at others or inanimate objects, an increase in “stimming” or self-soothing behaviors and sleep changes.
What to expect from school
At the school level, prevention is the best treatment and as a result, most school-based programs focus on stopping bullying before it starts. Promoting awareness and information about what is and isn’t okay is a big part of prevention. Fortunately or unfortunately, several high profile cases in the media have brought bullying out into the open. Avoidance of the issue and the secrecy that this enables, fan the bullies’ flames. Talking about it, naming it, and not shying away from it is the first step in diffusing the fear that powers intimidation.
In addition to prevention, the more effective school based programs (Positive Behavioral Intervention and Support, KiVa and Olweus Bullying Prevention Program) include elements of supervision, information, accountability, and collaboration. Supervision is often targeted to high risk times and areas (“hang-outs,” bus stops, before/after school time on campus). Information about expectations, rules, and consequences needs to reach both kids and school staff and should be readily provided to parents seeking information.
Successful anti-bullying programs have in common the understanding that a child’s environments can impact bullying either way – encouraging or discouraging bullying behaviors. Because any effective response must address a variety factors in a child’s environment, treatment is multi-disciplinary and requires collaboration. Parents need to be part of that collaboration and fortunately ,advocacy comes easy to many parents of children with ASDs. While there is consensus that both bullying and victimization are the results of modifiable skills deficits; for children with ASD, impacting the social and communication deficits can be challenging at best and not at all realistic in more severely affected individuals. If you suspect bullying, exploring all the possible sources is crucial. Bullying can and does happen everywhere. Thinking about your child’s schedule and daily contacts will give you an idea of who you need to talk to. Asking your child’s school to increase supervision in situations where that may not be the norm, may provide useful information while at the same time decreasing the opportunity for bullying to occur.
All schools in Washington State that receive federal funding are required by federal law to address discrimination based on physical characteristics which specifically includes those with “mental, physical or sensory handicap”. School districts are required to have procedures for students, families and school personnel to report incidents of bullying anonymously and with protection from retaliation. Designated school personnel should be able to articulate the policy (and response) and provide information to parents in a timely manner. Asking schools about their anti-bullying policy and clarifying what you can expect is a good reminder to schools of their responsibility to not shy away from the issue.
What can you do?
Learn what you can from you child in whatever way they communicate. Explore the “who, what, where, and when” so you have a starting point with school. If feasible, ask your child about how they would like you to help. Often parent’s first instincts can increase fear of reprisal and exacerbate anxiety and school resistance in children who are already feeling unsure about school. Learn what school knows about the situation and share anything you have learned from your child. Schools need to be aware before they can be expected to deal with the situation. Start with a trusted staff member or primary teacher. Remember that most bullying occurs outside of the classroom and therefore teachers often have only partial information. If you feel you are not being heard or your concerns are being dismissed, talk with a school administrator. Educate yourself about your child’s rights and his/her school’s anti-bullying policy.
Some links are below to help you with this. Get involved by participating in school or community based anti-bullying initiatives. Advocate for your child’s right to an appropriate education free from the fear of intimidation and mistreatment. There may be a role for helping schools understand how children with ASDs experience or react to bullying. Offer your experience and expertise. If your child acts out as a consequence of bullying, make sure the response is appropriate and takes into account your child’s disability. Finally, promoting social awareness and confidence through role playing with your child can enhance your child’s ability to respond to bullying and support development of social skills. Don’t Pick on Me by Susan Green has a number of exercises for children and parents who wish to enhance their skills.