IAN Research Report: Bullying and Children with ASD
It has been suggested that children with autism spectrum disorders (ASDs) are especially vulnerable to bullying. The Interactive Autism Network (IAN) is now sharing initial results of a national survey on the bullying experiences of children on the autism spectrum. Our findings show that children with ASD are bullied at a very high rate, and are also often intentionally “triggered” into meltdowns or aggressive outbursts by ill-intentioned peers. (The final IAN study was published in the journal Autism in May 2014).
Bullying and its consequences
One of the first researchers to study bullying, Dan Olweus, defined bullying as “aggressive behavior or intentional ‘harmdoing’ which is carried out ‘repeatedly and overtime’ in an interpersonal relationship characterized by an imbalance of power.” He went on to note that victims rarely do anything to provoke the behavior, and that bullying is a form of abuse.1
Olweus conducted his groundbreaking studies on bullying in the 1990s. Since that time, the way bullying is viewed has changed. Bullying is no longer seen as a normal, yet unavoidable part of childhood that can safely be ignored. Instead, it has been recognized as a major social problem with consequences for victims, perpetrators, and bystanders alike. There is evidence that both victims and bullies are at increased risk of health complaints like headaches and stomach aches,2,3 as well as mental health issues like depression and anxiety,4,5,6 and suicide.7,8,9 Meanwhile, a new form of bullying has added to these concerns: cyberbullying. This is bullying carried out through new technologies such as texting or social networking sites like Facebook. It is especially pernicious because it allows bullies to reach victims even when they are supposedly safe inside their own homes.9,10,11 However, what may have raised awareness of bullying and its consequences most was an investigation by the U.S. Secret Service and Department of Education into the circumstances behind school attacks, like that at Columbine. Nearly three-quarters of school attackers were victims of bullying or abuse at the hands of their peers before they took extreme retaliatory action.12
The Bullying and School Experiences of Children with ASD Survey
Are children with ASD, who have major deficits in social understanding, especially at risk of bullying? Several studies provide some evidence that this is the case.13,14,15 In the fall of 2011, concern over the issue led the IAN team to develop a survey on the bullying experiences of children with ASD in partnership with Benjamin Zablotsky, a doctoral candidate at Johns Hopkins Bloomberg School of Public Health, and Dr. Catherine Bradshaw the Deputy Director of the Center for the Prevention of Youth Violence, Co-Director of the Johns Hopkins Center for Prevention and Early Intervention, and an expert on bullying.
The IAN survey examined several aspects of bullying, including whether the child had ever been bullied; had been bullied in the past month; or had ever behaved as a bully. Due to reports from families about children with ASD being provoked into outbursts by peers who knew how to "push their buttons," it also asked whether the child had ever been triggered into a meltdown or aggressive behavior on purpose. In addition, the survey covered what type of school the child attended, what behaviors the child displayed (e.g., rocking, hand flapping, talking endlessly about a favorite topic), and whether the child had any co-occurring conditions, such as anxiety or attention deficit hyperactivity disorder (ADHD).
We are currently preparing a number of scientific papers that address multiple, complex questions about bullying and children with ASD. At present, however, we are pleased to share with families a first look at the findings from the study.
Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted via the Internet by parents of children with autism spectrum disorders living in the United States who choose to participate. They may not generalize to the larger population of families affected by ASD. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field – or yet published in a scientific journal. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.
How many children were bullied?
First of all, we asked parents if their child had ever been bullied. A total of 63% of 1,167 children with ASD, ages 6 to 15, had been bullied at some point in their lives (Figure 1).
The rate was nearly the same for the 6% of children whose parents were homeschooling their children at the time of the survey. Based on some of the parents' comments, it is likely some children were being homeschooled because of past bullying. Said one mother, "After a horrible year in 3rd grade where he was clinically diagnosed as depressed (he has always been anxious), I pulled my son out of public school and am homeschooling him this year. He is doing much, much better without the constant name calling and being singled out for his 'weird' behaviors!"
Of 1,079 children between the ages of 6 and 15 who were attending some sort of school outside the home, 39% had been bullied in the past month. To get a sense of how the experience of these children might compare with that of peers who do not have ASD, we asked about the bullying experiences of their unaffected siblings. Of 795 typically-developing siblings, also age 6 through 15, 12% had been bullied in the past month. In other words, children with ASD were bullied at a rate more than three times higher than that of their unaffected siblings (Figure 2).
Some may argue that siblings of children with ASD are not exactly "typical," and might be vulnerable to bullying because they have a brother or sister on the autism spectrum. It's easy to imagine a situation where a bully taunts, "Your brother is weird – why does he flap his hands around like that?" leading to a variety of negative consequences. Unfortunately, we don't have information from completely typical children in families where no ASD is present so that we can compare both the children with ASD and their siblings to that group. Parents were able to choose "all that apply" from a list of possible types of bullying their child had suffered. The types of bullying most often reported were "being teased, picked on, or made fun of" (73%); "being ignored or left out of things on purpose" (51%), and "being called bad names" (47%). Nearly 30% of children who had been bullied had been pushed, shoved, hit, slapped, or kicked. In addition, 53% had been provoked into fighting back or having a meltdown. (See the section on Bullies and Bully-Victims, below.)
Potential risk factors
Bullying occurred at every grade level, although the worst time of all appeared to be from 5th to 8th grade (Figure 3). Between 42% and 49% of children with ASD in those grades had been bullied in the past month. Considering that the middle school years are notorious for social difficulties and bullying in general, this is not a surprise.16 Also interesting are the peaks in 5th and 8th grade, both of which are "rule the school" years before a transition to a new school level. Is this when bullies are boldest or jockeying most desperately for social position?
The data show that children attending regular public schools are bullied more frequently than children in other school settings. The percentage of children with ASD currently bullied in regular public schools was 43% while it was 28% for regular private schools, 30% for special education public schools, and 18% for special education private schools (Figure 4). This makes sense, as it is likely that the smaller and more sheltered the setting, the less frequently bullying may occur.
We also examined if there were differences in current bullying rates by type of ASD diagnosis. We put the diagnoses into three categories: autism, Asperger's syndrome, and "Other ASD," which consisted of pervasive developmental disorder not otherwise specified (PDD-NOS), and generic pervasive developmental disorder (PDD) or autism spectrum disorder (ASD). We found that 61% of children with Asperger's were currently being bullied, compared with 28% of those with autism and 37% of those with Other ASDs (Figure 5).
It will take a more detailed analysis to tell what is behind this difference. Is it that more children with Asperger's are in typical classrooms in regular public schools (which we have already seen are settings associated with more bullying), or is it because of other factors associated with Asperger's? It has been noted that children with Asperger's, who have normal to high IQs, but share the same problems with social understanding as others on the autism spectrum, are "perfect targets." 17 Susan Carter, whose 2009 study of 34 adolescents with Asperger's found 65% were bullied, noted:
"Children and adolescents with Asperger syndrome have a myriad of challenges confronting them in the schools they attend. Many will never have the opportunity to express their talents because they are misunderstood, and often they are denied services because they are articulate, do well academically, and appear too bright. In actuality, many children with Asperger syndrome have significant social deficits, severe sensory sensitivities, and are teased, isolated, and socially excluded by their peers."14
Another factor that may increase the risk of bullying for all children on the autism spectrum is co-occurring mental health problems. We found that children who, by their parent's report, suffered from ADHD, depression, anxiety, or oppositional defiant disorder (ODD) were all more likely to be bullied than children who did not have these conditions. This is in line with other studies that have found that attention deficit or mental health issues increase the risk of bullying for children on the autism spectrum.13,18
One important question is whether children with ASD develop mental health issues as a result of bullying, or are more likely to be victimized because they have these conditions. One study of 1,118 typical children in the Netherlands found victims of bullying developing both mental health issues and physical complaints like headaches, but also found anxious and depressed children were more likely to be bullied in the first place.19 We do not yet know if the same is true for children with ASD. It will take studies collecting data on the same children at different points in time to determine this.
We asked parents about behaviors common in individuals with ASD to see if any of these behaviors was strongly associated with becoming a victim of bullying. Children with more repetitive behaviors, like flapping or spinning, were less likely to be bullied. We do not know whether this was because they were more likely to have more severe autism and therefore to be in more sheltered school situations, or if this outward sign of a disabling condition made other children less likely to victimize them. Behaviors and traits that were associated with an increased likelihood of being bullied included:
- Poor hygiene
- Rigid rule keeping (enforcing adults' rules when other children would not)
- Continuing to talk about a favorite topic even when others are bored or annoyed
- Frequent meltdowns
- Inflexibility or rigidity
Sadly, one group that was frequently bullied was children with ASD who wanted to interact with other children, but had a hard time making friends. Of these, 57% were bullied, compared to only 25% of children who prefer to play alone and 34% of children who will play, but only if approached. The one slightly bright spot was that children who had learned to make friends successfully were bullied at a lower rate: 34%.
Bullies and “bully-victims”
Children with ASD may also behave as bullies, or at least be viewed as such. In fact, 20% of parents told us their child with ASD had bullied others, a rate that compares to only 8% for typical siblings.
Most of these children were bully-victims – children who had been bullied and had also bullied others (Figure 6). Bullying researchers have noticed before that children with behavioral, emotional, or developmental issues may behave as both bully and victim.20 Unlike victims who are more passive, bully-victims insult their tormentors or otherwise try to fight back in a way that only makes the situation worse. They are often "disruptive and impulsive, with poor social and problem-solving skills."21
Considering the deficits in social understanding that children with ASD have, it may be that their "bullying" is different than that displayed by typical children who, according to research, generally use aggression to increase and maintain social status in the peer group.22 Some parents whose children had "bullied" noted that the motivation behind the behavior had nothing to do with becoming top dog:
- "My son doesn't realize he is bullying. He is trying to get other kids to pay attention to him so he does it by grabbing their ball away from them or getting 'in their face' when they say to stop."
- "He has very set rules of behavior that he expects all to follow. He doesn't see how his reaction to perceived slights or rule-breaking is sometimes bullying."
- "Our boy wants what he wants when he wants it. He may take an object from another child or scream when unhappy but any purposeful cruelty, he would never do."
Individuals with ASD usually do not have the social awareness to stay quiet or even lie when called for in social situations. Unfortunately, their complete honesty was viewed as bullying in some cases. (Imagine a very honest child saying, "You're really fat," or "I don't like you and I don't want to sit by you.") Another problem parents reported was social misunderstanding. For example, a child with ASD might believe a peer who had bumped into her by accident had done so on purpose, and then lash out. In addition, some parents noted that children would begin to bully only after having been bullied.
One central issue was the aggressive behaviors or meltdowns which many children with ASD have,23 and which are all too easy to induce. Parents were asked if another child, who knows what bothers or upsets the child with ASD, had ever used that knowledge to trigger a meltdown or aggressive outburst on purpose. Fifty-two percent of parents said "yes." In some cases, bullies got the child to fall apart emotionally. "Often kids try to upset her because they find it funny when she gets upset and cries. She is overly emotional, and they seem to get a kick out of this," one mother shared. In some cases, bullies provoked much more aggressive meltdowns, with immediate consequences for the child originally bullied. Said one parent, "I'm so glad you asked about other children knowing how to press buttons. That has happened with my son with ASD… Being in a class of gifted children has costs and benefits--kids are more intuitive, which means they can excuse a lot of unusual behavior, but it also means they know exactly how to elicit behaviors when they feel like it. It's never OK for my son to hit, but what happens is kids pick at him until he pops, and often times his target is the teacher! His stress builds up as the kids mess with him, then, if the teacher reprimands him, he loses control, scratching, pulling clothing and hair and trying to bite the teacher."
Bullying and children with ASD: An urgent problem
Bullying is extremely common in the lives of children with ASD, and occurs at a much higher rate for them than it does for their typically developing siblings. It is crucial that educators, providers, advocates, and families be aware of this, and be prepared to intervene. Children with ASD are already vulnerable in multiple ways. To have to face teasing, taunts, ostracism, or other forms of spite may make a child who is already struggling to cope completely unable to function. If a child was anxious, or dealing with issues of self-control, or unable to focus before there was any bullying, imagine how impossible those issues must seem when bullying is added to the mix. Cruelest of all is the fact that bullying may further impair the ability of a child with ASD, who is already socially disabled, to engage with the social world. "The bully made life a complete hell for my son," said one mother who withdrew her child from school. "He came home from school crying every day and begging to never have to go back." Said another, "This has had a significant influence on my daughter's ability to trust her peers and develop new relationships."
There is clearly an urgent need to increase awareness, influence school policies, and provide families and children with effective strategies for dealing with bullying, whether a child is a bully, victim, or bully-victim. It is our hope that this research will contribute to these efforts.
- An abstract of the IAN research article, Risk factors for bullying among children with autism spectrum disorders, in the journal, Autism.
- Special Needs Anti-Bullying Toolkit - developed by Autism Speaks, the National Center for Learning Disabilities, PACER’s National Bullying Center, and Ability Path in partnership with the new documentary film BULLY.
- National Public Radio report on the IAN Bullying survey.
- Bullying and ASD – an article on IAN Community with additional background information on bullying and children on the autism spectrum.
- National Autism Association Safety Initiative: Bullying – information plus “5 things parents can do."
- The Bullying and Cyberbullying Prevention & Advocacy Collaborative (BACPAC) is a bullying-focused initiative at Children's Hospital Boston. A multidisciplinary group acts as an information resource to colleagues, patients, and schools regarding bullying/cyberbullying prevention, detection and intervention. Team members are also involved in bullying research.
- New Research on Children with ASD and Aggression – an article on the latest research.
- Interview with Dr. Connie Anderson on Bullying Survey results.
- Autism research webinar on aggression and autism.
- Olweus, D. (1994). Bullying at school: Basic facts and effects of a school based intervention program. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 35(7), 1171-1190.
- Fekkes, M., Pijpers, F. I., & Verloove-Vanhorick, S. P. (2004). Bullying behavior and associations with psychosomatic complaints and depression in victims. The Journal of Pediatrics, 144(1), 17-22. View Abstract
- Nishina, A., Juvonen, J., & Witkow, M. R. (2005). Sticks and stones may break my bones, but names will make me feel sick: The psychosocial, somatic, and scholastic consequences of peer harassment. Journal of Clinical Child and Adolescent Psychology : the Official Journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53, 34(1), 37-48. View Abstract
- Bond, L., Carlin, J. B., Thomas, L., Rubin, K., & Patton, G. (2001). Does bullying cause emotional problems? A prospective study of young teenagers. BMJ (Clinical research ed.), 323(7311), 480-484. View Abstract
- Kumpulainen, K. (2008). Psychiatric conditions associated with bullying. International Journal of Adolescent Medicine and Health, 20(2), 121-132. View Abstract
- Gladstone, G. L., Parker, G. B., & Malhi, G. S. (2006). Do bullied children become anxious and depressed adults?: A cross-sectional investigation of the correlates of bullying and anxious depression. The Journal of Nervous and Mental Disease, 194(3), 201-208. View Abstract
- Klomek, A. B., Marracco, F., Kleinman, M., Schonfeld, I. S., & Gould, M. S. (2007). Bullying, depression, and suicidality in adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 46(1), 40-40-49.
- Kim, Y. S., & Leventhal, B. (2008). Bullying and suicide. A review. International Journal of Adolescent Medicine and Health, 20(2), 133-154. View Abstract
- Hinduja, S., & Patchin, J. W. (2010). Bullying, cyberbullying, and suicide. Archives of Suicide Research : Official Journal of the International Academy for Suicide Research, 14(3), 206-221. View Abstract
- Kessel Schneider, S., O'Donnell, L., Stueve, A., & Coulter, R. W. (2011). Cyberbullying, school bullying, and psychological distress: A regional census of high school students. American Journal of Public Health, 102(1), 171-177. View Abstract
- Sontag, L. M., Clemans, K. H., Graber, J. A., & Lyndon, S. T. (2011). Traditional and cyber aggressors and victims: A comparison of psychosocial characteristics. Journal of Youth and Adolescence, 40(4), 392-404. View Abstract
- Vossekuil, B., Fein, R. A., Reddy, M., Borum, R., & Modzeleski, W. (2002). The final report and findings of the safe school initiative: Implications for the prevention of school attacks in the United States. Washington DC: United States Secret Service and United States Department of Education. View Report
- Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(2), 266-277. View Abstract
- Carter, S. (2009). Bullying of students with asperger syndrome. Issues in Comprehensive Pediatric Nursing, 32(3), 145-154.
- Little, L. (2002). Middle-class mothers' perceptions of peer and sibling victimization among children with Asperger's syndrome and nonverbal learning disorders. Issues in Comprehensive Pediatric Nursing, 25(1), 43-57. View Abstract
- Nansel, T.R., Overpeck, M., Pilla, R.S., Ruan, W.J., Simons-Morton, B., & Scheidt, P. (2001). Bullying behaviors among U.S. youth: Prevalence and association with psychosocial adjustment. Journal of the American Medical Association, 285(16), 2094-2100. View Abstract
- Heinrichs, R. (2003). Perfect targets: Asperger syndrome and bullying - practical solutions for surviving the social world. Shawnee Mission, Kansas: Autism Asperger Publishing Company.
- Montes, G., & Halterman, J. S. (2007). Bullying among children with autism and the influence of comorbidity with ADHD: A population-based study. Ambulatory Pediatrics : the Official Journal of the Ambulatory Pediatric Association, 7(3), 253-257. View Abstract
- Fekkes, M., Pijpers, F. I., Fredriks, A. M., Vogels, T., & Verloove-Vanhorick, S. P. (2006). Do bullied children get ill, or do ill children get bullied? A prospective cohort study on the relationship between bullying and health-related symptoms. Pediatrics, 117(5), 1568-1574. View Abstract
- Van Cleave, J., & Davis, M. M. (2006). Bullying and peer victimization among children with special health care needs. Pediatrics, 118(4), e1212-9. View Abstract
- Berger, K. S. (2007). Update on bullying at school: Science forgotten? Developmental Review, 27, 90-126.
- Faris, R., & Felmlee, D. (2011). Status struggles: Network centrality and gender segregation in same- and cross-gender aggression. American Sociological Review, 76(1), 48-48-73.
- Kanne, S. M., & Mazurek, M. O. (2011). Aggression in children and adolescents with ASD: Prevalence and risk factors. Journal of Autism and Developmental Disorders, 41(7), 926-937. View Abstract