CEG is very excited to share, here, one of the chapters from a book Kate is editing, Tales out of School: Students, parents, and professionals speak about why students with Autism Spectrum Disorder are leaving public schools in Florida. This chapter is written by Kim Rust. It is thought-provoking and very well-written. The book will be published later this year, and is a compilation of essays. Please feel free to share this essay as you see fit, making sure to credit it as copyright: Kim Rust (2016), from Tales out of School: Students, parents, and professionals speak about why students with Autism Spectrum Disorder are leaving public schools in Florida, edited by Kate Cumiskey, MFA. Here’s a brief quote we love:
“One problem I perceive in the literature surrounding this topic is a type of victim-blaming. The researchers turn it around and explore why children with ASD have a difficult time succeeding socially. After all, “persistent deficits in social communication and social interaction” is one of the diagnostic criteria of ASD (American Psychiatric Association, 2013, p.50). So, it’s their fault, right? If they could just learn to socialize correctly, the other children would like them better, wouldn’t they? The commonly accepted view that people with ASD lack Theory-of-Mind (ToM) skills fuels this type of dialogue.”
My son, who has a diagnosis of high-functioning autism spectrum disorder (ASD), is about to make the life-altering transition from private preschool to kindergarten. The prospect of this move fills me with intense anxiety, teetering one step away from a cliff of terror. We are currently on our third preschool, and we have finally found a place where Cptn is thriving, and the teachers and staff truly seem to love him. And now we need to take our son’s tiny hand and leap off into…nothingness, the unknown. Simply put: terror.
We have not yet decided which school we will send Cptn to, whether the public school we are zoned for, a different public school for the gifted program (if he qualifies – testing prior to age three got him close to the cut-off, but he started making the blocks into trains and didn’t finish the IQ test), or a local private school. While the academics at the private school are said to be merely adequate and on par with a public education (in the small town where we live, private schools are more of religious-race-class enclaves than halls of intense academic rigor), the primary appeal of that private school is the rumored culture: kids there are supposed to be taught to be really nice.
In fact, the primary reason we have known friends with children with high-functioning ASD to leave the public schools is this social piece: in public school their children were being neglected or worse, or were simply not making friends. In discussing this topic, Temple Grandin (2012) observes that parents of children with high-functioning ASD often leave the public schools for private schools, including schools specializing in ASD, “to get away from being bullied or to keep from becoming lost in the crowd of a huge school.” Of course, I don’t want Cptn to be bullied or lost in the crowd. I want to explore what it could be about the school culture of public schools that leads to bullying and/or neglect of kids with ASD (and doubtless children with other visible and invisible disabilities). Following that, I would like to discuss possible solutions.
Amy Mackin (2013) poignantly describes the experience of her son, Henry. She explains how he suffered an emotional breakdown because he had been bullied on his daily bus ride. For months. How could this happen with no one knowing? As she explains, “No one was paying attention during the most difficult parts of Henry’s day – the unsupervised social settings” (Mackin, 2013). Public schools are larger than private schools and have less staff. Teachers and staff cannot be everywhere at once. And the focus of public schools has to be on academics, due to the way funding works. (Get those test scores, or bust!) However, for most kids with high-functioning ASD, academics are not their biggest problem at school – it is the social side of things. As Mackin writes, “When typical middle school boys are showing interest in girls and competitive sports, their Asperger’s counterparts are often still playing with toys and building with Legos” (Mackin, 2013). These differences can be enough to make kids with ASD stand out, and not in a good way.
Indeed, the subtle differences, the ones that make one appear just slightly odd or different, can make a child with high-functioning ASD most especially vulnerable to bullying or teasing by peers. Most children likely realize that it would be just plain cruel to openly mock the severely autistic child who is nowhere near grade level verbally or socially. However, mocking a preadolescent peer who still plays with trains or Legos is likely seen as fair game. Those of us who were ever teased growing up can remember how amazingly astute children are in picking up minute social differences and just running with them. Rowley, et al., conducted a study on 10 to 12 year-old higher- and lower-functioning youth in different types of school placements. Rowley et al., found that “[c]hildren with an ASD who were less socially impaired in mainstream school experienced higher levels of victimization; whereas for more socially impaired children victimization did not vary by school placement” (2012, p.1126, emphasis theirs). In other words, the less socially impaired children (i.e., children with higher-functioning ASD) who were in mainstream placements were victimized more than similar children placed in specialized schools. These findings mirror the anecdotal information I have gathered from friends and client families about why many parents of children with high-functioning ASD end up leaving the public schools, particularly in the later elementary and middle school years. They want to get their child away from the bullying.
However, overt bullying isn’t the only negative social experience these children have in public schools. There is also the very real possibility of children being socially invisible, or what I think of as benign neglect. Only a few children in each school are bullies, but there are many other children who simply fail to include or befriend the children on the fringes, which is where many children with high-functioning ASD find themselves. A 2011 study by Rotheram-Fuller et al., showed that children with ASD have fewer friendships than more typical peers across all grade levels, and even fewer proportionately in later grades (this intuitively makes sense, as younger children can be more accepting of social differences than adolescents) (2011, p. 1233). Second, children with ASD tend to misperceive their friendships, as they often include peers in their list of friends who do not include them in their list (Rotheram-Fuller et al., 2011, p.1233). Third, and perhaps most interesting, kids with ASD are less central to the social life in the classroom than their peers (Rotheram-Fuller et al., 2011, p.1232). As the article explains,
Only 55.0% and 57.9% of children with ASD were considered nuclear or secondary in classroom social networks at the early and middle grades, respectively, while only 23.8% of children with ASD were in that category in the later grades. These are incredibly low rates of inclusion relative to their typical peers, who were considered to be nuclear or secondary within the classroom rates at 95.0%, 92.1%, and 85.7% respectively across the grade levels (Rotheram-Fuller et al., 2011, p.1232).
Those are huge differences, statistically speaking, revealing that children with ASD were seen as not part of the social life of the school as compared to their more typical peers. The effects of such alienation on a child’s self-esteem and social development is devastating. I still remember one extremely intelligent, but socially awkward boy who had no friends at my grade school. Knowing what I know now, I realize that he was likely undiagnosed high-functioning ASD. When I ran into him near the end of high school he made the heartbreaking statement, “I was so alienated in grade school that I didn’t even realize that I wanted friends.” This young man may not have been bullied, but he was harmed nonetheless.
One problem I perceive in the literature surrounding this topic is a type of victim-blaming. The researchers turn it around and explore why children with ASD have a difficult time succeeding socially. After all, “persistent deficits in social communication and social interaction” is one of the diagnostic criteria of ASD (American Psychiatric Association, 2013, p.50). So, it’s their fault, right? If they could just learn to socialize correctly, the other children would like them better, wouldn’t they? The commonly accepted view that people with ASD lack Theory-of-Mind (ToM) skills fuels this type of dialogue. Theory of mind can be defined as “the ability to attribute mental states — beliefs, intents, desires, pretending, knowledge, etc. — to oneself and others and to understand that others have beliefs, desires, intentions, and perspectives that are different from one’s own” (Premack and Woodruff, 1978, p.515). The idea, then, is that children with ASD do not understand how others are thinking, and this leads them to be inept at engaging in social interactions and making friends. In the late 1980’s and 1990’s many studies were set up, with puppets, stories, and faces showing different emotions to illustrate that people with ASD lack ToM or aren’t as good at ToM compared to other people. More recent studies reflect advances in technology, with a search for the brain structures causing these ToM issues, using PET Scans and other technology.
Looking at this research, I accept the idea that we have a neurobiological capacity to develop ToM, and that this capacity may not develop, or may not develop as fully, in some individuals with ASD. However, I am interested in the question of how ToM develops, in anyone? I do not believe that ToM is an inborn trait that neurotypicals just get for free as part of “typical” development. Rather, I would suggest that ToM is something that develops due to the social interactions that neurotypicals get in a complex give-and-take with the other people.
My belief is that ToM develops through social interactions, and that is where the deficit of ToM may originate for children with ASD. I would contend that if you spent your early years lining up train cars, spinning wheels, playing video games, or otherwise isolated from your peers and caregivers, you would not develop ToM either. In analogy to this idea of a ToM deficit in individuals with ASD, it is commonly thought that young children with ASD largely “do not” develop symbolic, imaginative play; in fact, “difficulties in sharing imaginative play” is listed as one of the criteria for ASD in the DSM V (American Psychiatric Association, 2013, p.50). However, in my experience as a PLAY Autism Intervention consultant, children with ASD can absolutely be led to develop symbolic, imaginative play, including taking the feelings of other players into account. Granted, these developments might be on a later timeline than their more typical peers, but children with ASD can develop these skills. They just need to be given the opportunity through social interactions with caregivers and peers. Just as many children with ASD can be led to develop shared symbolic, imaginative play, I believe ToM can also be culti
vated in individuals with ASD. “Do not”does not equate with “Cannot.”
I believe that what applies at home also applies at school. Solving the problem of the social lives of children with ASD in public schools is like tracing your fingers around a Mobius strip. You start in one place and end up right where you started: with the question of how to develop healthy social interactions between children with ASD and their more typical peers, and how to do this in large, resource-drained public schools. One idea is changing the school culture, starting with the children themselves. Peer-mediated approaches, where socially adept peers (the social leaders of the school, in a sense) are trained in school settings to engage children with ASD (the children with ASD are not identified to their peers to protect their confidentiality), have shown promise for increasing the centrality of kids with ASD in the social life of their classroom. A 2012 study by Kasari et al., compared improvements in social centrality and number of friendship nominations for children with ASD who received peer-mediated interventions, child-centered interventions (i.e., the child with ASD was given social skills training with an adult), or both. Improvements were seen in all cases, with the greatest gains being seen in the children who received both interventions (Kasari et al., 2012, p.431). The researchers rightly suggest, in my opinion that the evidence points to interventions in schools being the most effective approach (Kasari et al., 2012, p.439). After all, these kids are around each other seven hours per day, making school the most likely place for children to develop sustainable, robust friendships.
I am excited about the possibility of peer-mediated interventions in which the trickle-down effects of understanding and kindness can have massive benefits for our children with ASD. Creating public school environments that are truly socially inclusive is not impossible. The public outreach campaign themed “Just say ‘Hi’” reminds us that sometimes change and connection can begin with something incredibly simple. In this advertisement, Apple CEO Tim Cook asks Siri, “How do you start a conversation with someone with a disability?” Siri answers, “It’s easy. Just say ‘Hi’” (Cerebral Palsy Foundation, 2015). Children need to be taught compassion and kindness, especially towards other children who don’t easily fit in with their peers. Whether through something as simple as teaching children to connect by saying “Hi” or disseminating broad-based education and peer-mediated interventions in our public schools, change needs to happen to make our public schools an environment that is welcoming and nurturing to all children, and especially to our children with ASD. If I can be part of making this happen, then I will feel less terrified giving my son that little push into his kindergarten class come next fall.
 Here, I will call my son “Cptn,” as I do in my blog, “Crashing the Spectrum.” Cptn Lafaargh is my son’s self-identified “pirate name” and taken from a children’s book. Cptn was diagnosed with high-functioning autism spectrum disorder in December of 2013, two months before he turned three years old.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders
(5th ed.). Washington, DC: Author.
Cerebral Palsy Foundation. [Tim Cook]. (2015, December 8). Tim Cook [Video File]. Retrieved
Grandin, T. (2012, May/June). Which school is best for my child with ASD. Autism Asperger’s
Digest. Retrieved from http://autismdigest.com/best-asd-school/
Kasari, C., Rotheram-Fuller, E., & Gulsrud, A. (2012). Making the connection: randomized
controlled trial of social skills at school for children with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 53(4), 431-439.doi: 10.1111/j.1469-7610.2011.02493.x.
Mackin, A. (2013, Jan. 3). How my autistic son got lost in the public school system. The
Premack, D., & Woodruff, G. (1978). Does the chimpanzee have a theory of mind? Behavioral
and Brain Sciences, 1, 515-526. doi:10.1017/S0140525X00076512
Rotheram-Fuller, E., Kasari, C., Chamberlain, B., & Locke, J. (2011). Social Involvement of
Children with Autism Spectrum Disorder in Elementary School Classrooms. Journal of Child Psychology and Psychiatry, 51(11), 1227-1234. doi: 10.1111/j.1469-7610.2010.02289.x.
Rowley, E., Chandler, S., Baird, G., Simonoff, E., Pickles, A., Loucas, T., & Charman, T.
(2012). The experience of friendship, victimization and bullying in children with an autism spectrum disorder: Associations with child characteristics and school placement. Research in Autism Spectrum Disorders, 6, 1126-1134.