Tag Archives: Education

Diagnosis and Discipline

For a student with autism, diagnosis is always a double-edged sword.  On the one hand, an official diagnosis may result in access to services such as ABA (for good or ill), speech therapy, occupational therapy, physical therapy, etc.; and for accommodations at school such as classroom aides, extended time on tests, access to quiet rooms, etc.  It offers some legal protections against suspension or expulsion from school.  At the same time, autism obviously carries a profound stigma in American society.  In school, the child who has an autism diagnosis is often regarded by administrators, teachers and staff as different and potentially dangerous.  Non-verbal autistics are usually assigned to special education classrooms, or even separate schools, where they usually receive only a limited academic education, regardless of their actual intelligence and potential.  And despite privacy rules, autistic children’s diagnoses far too often become known to their fellow students, resulting in bullying.

Many parents are aware of these problems, and struggle with deciding what is best for their child, or sometimes what is best for the parents themselves, or for the rest of the child’s family.  Should they seek a diagnosis or not?  And if they do receive a diagnosis from a doctor or psychologist, should they share it with the school?  Does their child’s need for services, accommodations, and protection outweigh the potential impact of stigma?  But parental anxiety about stigma is only one of many factors affecting whether a child is diagnosed.  Sex, socio-economic status, race/ethnicity, immigrant status, language and cultural differences, and even the place where a child lives, all play a role in determining who will be diagnosed and who will not.

“Four times as many boys as girls have autism.”  This has been repeated so often that it may be treated as a simple fact.[1]  But the correct formulation should actually be that “four times as many boys as girls receive autism diagnoses.”  We simply don’t know how many girls have autism.  What we do know now, though, is that many girls on the spectrum remain undiagnosed because parents, psychologists and pediatricians don’t know what autism looks like in girls.[2]   For example: parents and care-givers are more likely to become concerned and more likely to seek a professional diagnosis when children engage in “externalizing” (aggressive) behaviors.  But because girls are less likely than boys to behave aggressively, parents may not realize the extent to which they are “different” from other children, and as a result, their daughters may not be tested for autism until they reach school age or even beyond.[3]  In addition, most parents and professionals still don’t realize that autistic girls are better at “camouflaging” or “passing” than autistic boys, because they are likely to imitate the behavior of those around them (even if they don’t understand the reasons for that behavior), whereas boys are more likely to simply withdraw from social interactions altogether.[4] The standard diagnostic criteria for autism present additional problems.[5]  Engagement in repetitive behaviors has long been a key criterion.  But autistic girls are less likely to engage in repetitive behaviors than boys—and even when they do, these behaviors may appear at first glance to be normal for young females.  Autistic girls may collect dolls or devote lots of time to coloring pictures.  What parents and the professional responsible for diagnosis often don’t realize is that these girls are not playing with the dolls, but rather lining them up according to the color of their dresses; they are filling their coloring books with intricate patterns that have little to do with what’s going on in the pictures.[6]  As a result of these and other factors, girls are generally diagnosed at a later age than boys, and may remain undiagnosed into adulthood, even when they are quite severely affected by autism.”[7]

Coming from a poor family also makes it less likely that an autistic child will receive a diagnosis.  As one study found:  “ . . . the proportion of children in poverty receiving services or supplementary income because of ASD was lower than the proportion expected on the basis of estimates of the prevalence of ASD in the general population.”[8]  While autism diagnoses have increased rapidly in recent years, the increase has been much lower for the poor than for other income groups.[9]  This is almost certainly because access to health care (and therefore medical sources of diagnosis) is much more limited for the poor in the United States, than for the middle and upper class.  In countries with universal health care, such as Sweden and France, such differences do not exist.[10]

Children of color are less likely than white kids to be diagnosed with autism.  They are also more likely than white kids to be diagnosed late (after they have started school), or simply mis-diagnosed as having emotional or behavioral problems. The time from when parents become concerned to when the child receives an official diagnosis (if they ever do) is significantly longer for children of color than for whites.  Even when socio-economic status and levels of parental education are factored in, these disparities remain.  Among children of color, those most likely to be diagnosed are those with lower (or apparently lower) IQs, while those with the “milder phenotype” of autism (what used to be called Aspergers syndrome) remain under-identified. Fewer children of color receive early intervention services (such as ABA or TEACCH) for autism, and when they do receive services, it is generally for fewer hours a week. Once they reach school age, they are more likely than white kids to be identified as having “behavior problems” and are over-represented in school services targeting behavior (as opposed to social skills or learning techniques). [11]  High levels of poverty in these communities, as well as prejudice, contribute to these disparities.  Racial disparities in diagnosis and services affect all non-white children, but some groups—especially Hispanics and African-Americans—are more seriously affected than others.

Immigrant families may be poor and they may belong to racial or ethnic minorities, but they also face problems in receiving accurate diagnoses for their children simply because they are immigrants.  Language differences can be a significant barrier, because so many of the diagnostic tools for autism are based on instruments originally written in English, and perhaps unavailable in, or poorly translated into, other languages.  (Some immigrants may also be unable to read or write.)  Lack of familiarity with American medical and educational systems may play a role, as do those systems lack of familiarity with other cultures.  For example:  many American practitioners view a child who is unwilling to make eye contact with them as potentially autistic.  However, in many immigrant communities, children are taught that it is rude to look directly into an adult’s eyes.  Some of the testing used to detect autism looks at children’s interactions with toys—but immigrant children may have never seen the toys presented to them, and may have no idea how to play with them “appropriately.”[12]  It is also possible that cultural differences may shape an immigrant family’s decision to seek a diagnosis. One study found that Korean-American families in New York City were often reluctant to seek diagnosis (or even discuss autism with others), because of the shame having a disabled child might bring on their family.[13]  This, and other similar studies, must be treated with caution, however, because they tend to be based on interviews with a very small sample of people, who may not be representative of the group as a whole.  However, it is certainly possible that cultural differences play a role in immigrant families’ decision to seek a diagnosis.

Finally, there is the question of whether families who want a diagnosis and who have enough resources to get one can find someone to provide it.  Other things (wealth, English language competency, etc.) being equal, it is not very difficult to find a doctor or psychologist able to diagnose autism in most of America’s big cities.  However, one recent, if somewhat controversial, study, has identified a multitude of “diagnosis deserts,” especially in rural or thinly populated parts of the United States.  80% of U.S. counties have no autism diagnostic clinics.[14]  Families from these areas have to either travel long distances to find a qualified diagnostician, or wait until their children are old enough to receive diagnoses and services from local school systems.

Disparities in the ability to get an autism diagnosis are significant, and they have significant implications as well.  In my next post I will concentrate on just one issue—the impact of having/not having an autism diagnosis on school discipline.

[1] E.g., “What is Autism Spectrum Disorder,” Center for Disease Control and Prevention website (current):  https://www.cdc.gov/ncbddd/autism/facts.html;  Deane Morrison, “Why Autism Strikes Mostly Boys,” University of Minnesota’s Office of the Vice-President for Research’s website (November 27, 1917): https://research.umn.edu/inquiry/post/why-autism-strikes-mostly-boys;

[2] Sylvie Goldman, “Sex, Gender, and the Diagnosis of Autism—A Biosocial View of the Male Preponderance,” Research in Autism Spectrum Disorders 7 (2013), 675-679; Lauren Little, et al., “Do early caregiver concerns differ for girls with autism spectrum disorders?” Autism: The International Journal of Research and Practice 21 (2017), 728-32;

[3] Jorieke Duvocot, et al., “Factors Influencing the Probability of a Diagnosis of Autism Spectrum Disorder in Girls versus Boys,” Autism: The International Journal of Research and Practice 21 (2017), 646-58.

[4] Rachel Hiller, Robyn Young, and Nathan Weber, “Sex Differences in Pre-Diagnosis Concerns for Children Later Diagnosed with Autism Spectrum Disorder,” Autism: The International Journal of Research and Practice 20 (2016), 75-84.

[5] Although this view remains somewhat controversial.  Compare two recent articles in Spectrum News:  Nicholette Zeliadt, “Diagnostic Tests Miss Autism Features in Girls” (May 13, 2017): https://www.spectrumnews.org/news/diagnostic-tests-miss-autism-features-girls/; and Hannah Furfaro, “Diagnostic tests don’t miss girls with autism, study suggests”: https://www.spectrumnews.org/news/diagnostic-tests-dont-miss-girls-autism-study-suggests/.  It is worth noting, however, that the study described in the second article looked at girls already diagnosed with autism—which undermines its main point.

[6] Rachel Hiller, Robyn Young. and Nathan Weber, “Sex Differences in Autism Spectrum Disorder Based on DSM-5: Evidence from Clinician and Teacher Reporting,” Journal of Abnormal Child Psychology 42 (2014), 1381–1393.

[7] Rachel Hiller, Robyn Young, and Nathan Weber, “Sex Differences in Pre-Diagnosis Concerns for Children Later Diagnosed with Autism Spectrum Disorder,” Autism: The International Journal of Research and Practice 20 (2016), 75-84.

[8] Maureen Durkin, et al., “Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities,” American Journal of Public Health 107:11 (2017), 1818-1826.  See also Pauline Thomas, et al., “The Association of Autism Diagnosis with Socioeconomic Status,” Autism:  The International Journal of Research and Practice 16:2 (March, 2012), 201-13.

[9] C.D. Pulcini, et al., “Poverty and Trends in Three Chronic Disorders,” Pediatrics 139:3 (March, 2017).

[10] Maureen Durkin, et al., “Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities,” American Journal of Public Health 107:11 (2017), 1818-1826.

[11] Amber Angell, et al., “A Review of Diagnosis and Service Disparities Among Children with Autism from Racial or Ethnic Minority Groups in the United States,” International Review of Research in Developmental Disabilities 55 (2018), 145-80.  See also Jason Travers and Michael Krezmien, “Racial Disparities in Autism Identification in the United States During 2014,” Exceptional Children 84 (2018), 403-19.  Travers and Kremien pay special attention to differences between states in racial disparities; these differences can be quite significant.

[12] Emily Sohn, “Why Autism Seems to Cluster in Some Immigrant Groups,” Spectrum News, 11/29/17.

[13] Christina Kang-Yi, et al., “Influence of Community-Level Cultural Beliefs about Autism on Families’ and Professionals’ Care for Children,” Transcultural Psychiatry 55 (2018), 623-47.  But compare the following three studies, each of which comes to a different conclusion about Mexican immigrant mothers’ attitudes towards autism: Elizabeth Ijalba, “Hispanic Immigrant Mothers of Young Children With Autism Spectrum Disorders: How Do They Understand and Cope With Autism?” American Journal of Speech-Language Pathology 25 (2016), 200-13;  Shana Cohen and Jessica Miguel, “ Amor and Social Stigma:  ASD Beliefs Among Immigrant Mexican Parents,” Journal of Autism and Developmental Disorders 48 (2018), 1995-2009; Brenda Barrio, et al., “The Impact of Culture on Parental Perceptions about Autism Spectrum Disorders:  Striving for Culturally Competent Practices,” Multicultural Learning and Teaching 14 (2019), 1-9.

[14] Hannah Furfaro, “New Autism Map Points to Diagnostic Deserts in United States,” Spectrum News, 8/28/19:

Worst Practice

Trigger warning: descriptions of abusive practices.

Annoyance warning: this post is really long–sorry about that . . .

In November 2018, Alex Campbell, 13 years old and autistic, travelled to Washington, D.C., where he spoke to congressional staffers and disability activists about being physically restrained and secluded in his elementary school.  Alex is a seasoned advocate—he started talking to legislators in his home state of Virginia about these abusive practices at the ripe old age of ten, and the trip to Washington in 2018 was his second visit with federal legislators and staffers.  He plans to be a civil rights lawyer when he grows up.

But back when he was seven years old, Alex attended a private elementary school for children with disabilities.  He remembers being repeatedly dragged from his classroom to the school’s “crisis room,” a converted storage closet with black-painted walls and a tiny window.  The teacher or administrator who took him there would shove a heavy desk against the door to prevent it from opening and then leave him alone, confused and terrified.  “When I asked for help or asked if anyone was still there, nobody would answer,” Alex said. “I felt alone. I felt scared.”[1]  At the time, Virginia had no law requiring such schools to inform parents if their children were restrained or secluded, and the principal of Alex’s school threatened to confine him to the “crisis room” for the rest of the year if he told his parents about what was happening.  However, his mother and father soon noticed that their son had unexplained bruises, and that he was becoming more and more anxious.  Eventually, he broke down and told them what was happening to him at school.

Sadly, Alex Campbell’s history is far from unusual.  Shortly after Alex spoke in Washington for the second time, another autistic thirteen-year-old, Max Benson, was held for a prolonged period in a dangerous “prone restraint” by staff members in the private school for children with disabilities he attended in California.  Max later died in hospital from his injuries.  The use of prone restraints in schools is against the law in California, but the school in question (which has since gone out of business) frequently used them anyway.[2]

The U.S. Department of Education’s Civil Rights Data Collection reports that roughly 124,000 students were restrained or secluded across the country during the latest period for which data is currently available, the 2015-16 school year.[12]  But this is certainly an undercount, and perhaps by a large amount.  Many school districts do not collect the relevant data, or they fail to deliver it to the Department of Education as required.  Even when they do make a report, the information provided may not be accurate.  For example, the internal records of Cedar Rapids Community School District in Iowa showed that there had been 1,400 restraint/seclusion incidents from 2012-14—but none of these was reported to the U.S. Department of Education.  Iowa’s two senators launched an investigation into this underreporting.[13]  Fairfax County Public Schools in Virginia likewise reported zero cases of restraint or seclusion during the 2015-16 school year.  However, following an investigation by a journalist from American University, Fairfax County Schools reported 1,700 cases in 2017-18.[14]  In the CRDC survey, roughly 70% of all school districts nationwide reported zero cases of restraint and seclusion in 2015-16.[15]   If their reports were anything similar to those of Cedar Rapids or Fairfax County, then many, many cases of children being restrained and secluded have probably been kept hidden from the Department of Education’s view.

Children with disabilities (primarily children with autism and ADHD) are much more likely than those without disabilities to face physical restraint and seclusion (isolation), as well as other forms of discipline such as suspension and expulsion.  According to the U.S. Department of Education Civil Rights Data Collection for the 2015-16 school year, while children with disabilities represented only 12% of students nationally, they represented 71% of those suffering restraint and 66% of those facing seclusion.[3]   Children of color are especially likely to face restraint, seclusion, and even arrest, for minor infractions of school discipline.  After eleven-year-old African-American Kayleb Moon-Robinson, who is autistic, kicked a trash can during a meltdown in 2014, his Virginia school’s police officer filed charges of disorderly conduct against him in juvenile court.  The punishment imposed by the school was that he was only allowed to leave the classroom after his classmates had done so.  A few weeks later he broke this rule by leaving with the other kids.  The school principal called the police officer, who grabbed Kayleb and tried to take him to the office; when the child resisted, he was slammed down, handcuffed, and taken instead to juvenile court, where he was charged not only with a second count of disorderly conduct (a misdemeanor) but also with “assault on a police officer” (a felony).  A judge later found him guilty on all charges, and Kayleb faced doing time in a juvenile detention facility, but in the end the case was dropped and he transferred to a different school.[4]  The Department of Education’s Civil Rights Data Collection does not break down data by both race and disability, but it does note that while African-Americans make up only 15% of the student population in the United States, they represent 27% of students restrained and 23% of those secluded.[5]  

Children have few legal protections against these practices. A 2012 resource document from the U.S. Department of Education explicitly states that restraint should not be used “except in situations where the child’s behavior poses imminent danger of serious physical harm to self or others.”[7]  Yet as of December 2016, only 22 states required that a child must pose an immediate physical threat to her/himself or others before restraint can be used.  Elsewhere, restraints could be applied in cases where a child simply disobeys a teacher or acts out in non-threatening ways—as, for example, in the case of Thomas Brown of Denton, TX, who had a meltdown when he couldn’t get his shoes on and disrupted his class by swinging a computer mouse around.  Eventually Thomas hid in his classroom cubby and refused to come out.  At this point—when he actually posed no threat to anyone—his teacher and the school police officer dragged him out of the cubby, down the hall, and into the seclusion room, where he was handcuffed by the police officer.[8]  David Sims, of Conroe, Texas, who is also autistic, was not even having a meltdown when he was restrained.  Instead, he was pretending to point an imaginary rifle at his art teacher.  Nevertheless, he was handcuffed and taken to the local Juvenile Detention Center and held there for several hours.[9]

As of December, 2016, only 24 states forbade the use of mechanical restraints such as handcuffs or leather straps.[10]  Many others continue to permit tying children to their seats with handcuffs, straps, duct tape, and other materials—a significant safety hazard in case of fire or other emergencies.[11]  Only 20 states forbade the use of sedatives (“chemical restraints”) to keep children under control.  17 states continued to allow the use of physical restraints that impede breathing (such as prone restraints).  Only 23 states banned non-emergency seclusion of children with disabilities—elsewhere autistic children can still be locked in “crisis rooms,” storage closets or even bathrooms, sometimes for hours, for minor infractions.  Only 32 states required that disabled children remain under observation while in seclusion, even though lack of observation could and can lead to the injury or even death of an overwhelmed child.  As I write this, there is still no federal law regulating the use of restraint and seclusion in schools (this is what Alex Campbell has been lobbying for). 

Restraint and seclusion are dangerous practices, both for the children subjected to them and for the staff implementing them.  They expose children (and staff) to physical dangers:  bruises, bloody noses, broken limbs, and—in the case of the children—even death.  Still more disturbing, however, are the psychological effects.  Remember that autistic children do not “choose” to have meltdowns.  They are unable to control themselves during a meltdown, and are usually very frightened by what’s already happening to them—even before they are “punished” by an exasperated teacher or an untrained police officer.[16]  When that happens, they usually don’t understand why this is happening to them—they just know that they are being manhandled and locked up, and as a result they fight back even harder.  Hannah Grieco reports that her son needed a year of “intensive therapy” to recover from the restraint he suffered at school.[17]  An autistic blogger remembers being secluded in school for hours at a time as “torture.”[18]  Many children who have been subjected to these practices suffer from PTSD.  They may cry, scream or hide when they even see their school; they may beg their parents not to leave them there.  Some have committed suicide during seclusion (when a school has failed in its duty to keep children under observation) or at home, after repeated incidents of seclusion.

Finally, it is the case that restraint and seclusion are completely ineffective as forms of discipline.  As former Secretary of Education Arne Duncan put it: “there continues to be no evidence that using restraint or seclusion is effective in reducing the occurrence of the problem behaviors that frequently precipitate the use of such techniques.”[19] The techniques may teach children to fear their teachers, aides, or school resource officers, but they do not teach them anything at all about controlling their own behavior—which is out of their conscious control anyway.  If anything, they tend to make autistic students more anxious, more stressed, and therefore more likely to suffer meltdowns, creating a vicious cycle of stress, classroom disturbance, punishment, escalating stress, further disturbance, and so on.  In dealing with meltdowns, immediate resort to restraint and seclusion represent “worst” practice.

There are better ways.


[1] Hannah Rappleye and Liz Brown, “Thirteen-year-old Activist with Autism Wants to Close Seclusion Rooms at Schools,”  NBC news report, November 23, 2018: https://www.nbcnews.com/news/education/thirteen-year-old-activist-autism-wants-close-seclusion-rooms-schools-n935356.

[2]  Sawsan Morrar and Phillip Reese, “School Where Student with Autism Collapsed and Later Died Violated Restraint Rules, California Regulators Find,” The Sacramento Bee, December 8, 2018:  https://www.sacbee.com/latest-news/article222799470.html.

[3] U.S. Department of Education,“2015-16 Civil Rights Data Collection: School Climate And Safety,” p. 12https://www2.ed.gov/about/offices/list/ocr/docs/school-climate-and-safety.pdf.

[4] Susan Ferriss, “Virginia Tops Nation in Sending Students to Cops, Courts:  Where Does Your State Rank?” The Center for Public Integrity website, April 10, 2015; revised February 19, 2016:  https://publicintegrity.org/education/virginia-tops-nation-in-sending-students-to-cops-courts-where-does-your-state-rank/ ; Susan Ferriss, “Virginia drops felony charges against sixth-grade boy with autism,” Reveal (published by the Center for Public Integrity), March 15, 2016:  https://www.revealnews.org/article/virginia-drops-felony-charges-against-sixth-grade-boy-with-autism/.

[5] U.S. Department of Education, “2015-16 Civil Rights Data Collection: School Climate And Safety,” p. 11:  https://www2.ed.gov/about/offices/list/ocr/docs/school-climate-and-safety.pdf.

[6] National Disability Rights Network, “School Is Not Supposed to Hurt:  Investigative Report on Abusive Restraint and Seclusion in Schools”:  https://www.ndrn.org/wp-content/uploads/2019/02/SR-Report2009.pdf.

[7] U.S. Department of Education, “Restraint and Seclusion:  Resource Document,” 2012:   https://www2.ed.gov/policy/seclusion/restraint-and-seclusion-resource-document.html.

[8] “Denton ISD Faces Scrutiny After Officer Seen Handcuffing, Pinning Down Autistic Child,” report on the Dallas-Fort Worth CBS affiliate: https://dfw.cbslocal.com/2018/08/11/denton-isd-officer-seen-handcuffing-pinning-down-autistic-child/;  see also Tom Steele, “Autistic child severely bruised after school officer handcuffed him, Denton parents say,” Dallas News, May 15, 2018:  https://www.dallasnews.com/news/denton/2018/05/15/denton-parents-say-autistic-child-severe-bruises-after-school-officer-handcuffed.

[9] Matthew Martinez, “12-Year-Old with Autism Arrested for Using ‘Imaginary Rifle’ in Art Class, Family Says,” Fort Worth Star-Telegram, May 10, 2018: 

https://www.star-telegram.com/news/state/texas/article210879114.html ;  Maria Perez, “Texas Student with Autism Arrested for Allegedly Firing ‘Imaginary Rifle’,” Newsweek, May 12, 2018:  https://www.newsweek.com/imaginary-rifle-autism-texas-923316.

[10] These and the following numbers come from Jessica Butler, “How Safe is the Schoolhouse?:  An Analysis of State Seclusion and Restraint Laws and Policies,”  published in 2017 for the Autism National Committee:  https://www.autcom.org/pdf/HowSafeSchoolhouse.pdf.

[11] See for example, the cases of a little girl in Indiana: https://www.apnews.com/6c1bf5670c23465c9d48ce4a77634131;

And a little boy in Florida who spent all day strapped to a toilet training chair with his pants down around his ankles:  https://www.jacksonville.com/article/20090320/NEWS/801237594.

[12] Jenny Abamu, “Children Are Routinely Isolated in Some Fairfax County Schools.  The District Didn’t Report It,” on WAMU radio, updated March 13, 2019:

[13] Erin Jordan, “Senators Ask Federal Probe of School Seclusion Reporting,” The [Cedar Rapids] Gazette, June 3, 2018:  https://www.thegazette.com/subject/news/education/senators-ask-federal-probe-of-school-seclusion-reporting-20180603.

[14] Jenny Abamu, “U.S. Schools Underreport How Often Students Are Restrained Or Secluded, Watchdog Says,” All Things Considered, on National Public Radio, haveJune 18, 2019—based on a report from the U.S. Government Accountability Office:  https://www.npr.org/2019/06/18/731703500/u-s-schools-underreport-how-often-students-are-restrained-or-secluded-watchdog-s.

[15] Jenny Abamu, “U.S. Schools Underreport How Often Students Are Restrained Or Secluded, Watchdog Says,” on All Things Considered, on National Public Radio, June 18, 2019—based on a report from the U.S. Government Accountability Office:  https://www.npr.org/2019/06/18/731703500/u-s-schools-underreport-how-often-students-are-restrained-or-secluded-watchdog-s.

[16] Schools general deny that restraint and seclusion are used as punishment, but it is hard to see how aversive actions that do not teach children anything (see below) are anything else.

[17] Hannah Grieco, “Restraining Students with Disabilities is Harmful,” The Baltimore Sun, April 22, 2019: 

[18]  Anonymous, “Seclusion as Punishment,” in the “We Always Liked Picasso Anyway” blog, October 3, 2013:

https://autistictimestwo.blogspot.com/search?q=seclusion

[19] U.S. Department of Education, “Restraint and Seclusion:  Resource Document,” 2012, p. iii: https://www2.ed.gov/policy/seclusion/restraints-and-seclusion-resources.pdf.

THE DREADED MELTDOWN

 

“Autistic meltdowns may be frightening to observers, but at their most intense, they are nothing less than pure psychological torture for the person experiencing them. I feel as if I am caught in a war zone, terrified for my very life. My senses are on fire and I have very little control over myself.”[1]

Schools are overwhelming places for autistic children–full of blinding lights, unexpected loud noises, bullies, and constant social, physical, and intellectual demands.  It is hardly surprising, then, that these children sometimes have meltdowns in school settings.  These may be relatively quiet affairs, in which the child rocks back and forth, covering his or her face or ears to shut out overwhelming sensory stimuli—some autistic people refer to this type of experience as a “shutdown,” as opposed to a “meltdown,” which is generally much more dramatic, involving screaming or uncontrollable crying, kicking, biting, punching, throwing various items, or self-harming.  Other autistic people use the term “meltdown” for both types of reaction, because the internal experience is roughly the same in each.

Despite the fact that they occur frequently in school, many educators do not understand meltdowns or know how to deal with them.  The most common misperception—shared by far too many ill-informed scientists[2] as well as by many school personnel—is that an autistic meltdown is just an extreme form of temper tantrum. Meltdowns and tantrums may look somewhat similar—both involve screaming, crying, kicking, biting, etc.  However, the two phenomena arise from different causes, run very different courses, and can be distinguished through careful observation.  The conflation of meltdowns with tantrums far too often leads educators to characterize autistic children pejoratively, as “cunning” or “manipulative,” with all the negative consequences these labels entail.

Now temper tantrums really are manipulative behaviors, designed to gain attention, avoid unwanted demands, or obtain material rewards.  Neurotypical children acting out in these ways will—even as they scream or kick–keep an eye on the people around them, to see whether the desired outcome is forthcoming, and will often adjust their behavior if one strategy is not effective.  They are careful not to hurt themselves even as they flail around. Once their goal is achieved, the tantrum will stop.  Autistic children seldom have genuine temper tantrums, for the simple reason that they lack the social skills needed to analyze and manipulate those around them.  Most of the time, their disruptive behaviors fall into the meltdown category.[3]

In contrast to a tantrum, a meltdown is an instinctive “fight or flight” reaction to an intolerably stressful situation. Unlike tantrums, meltdowns are unplanned and have no goal. As Geoff Colvin and Martin Sheehan have noted in their excellent book on preventing meltdowns in schools, “One of the defining characteristics of a meltdown is that the student is basically oblivious of anyone and anything in the environment.”[4]  The child suffering a meltdown never keeps an eye on the people around them to see how they react, cannot adjust his or her behavior to achieve a particular purpose, and cannot bring the meltdown to an end until it has run its course.  Older children and adults may eventually learn to recognize the signs of impending meltdowns, and—if they are lucky—they may sometimes be able to head them off.[5]  Most schoolchildren, however, do not have this level of self-perception, and are generally unable to either recognize the signs of an approaching meltdown or take action to prevent it from happening.

It is extremely important to remember that autistic children (and their adult counterparts) do not enjoy having meltdowns—on the contrary, they find the experience frightening and painful.  While autistic children do write about having meltdowns on various online fora, they seldom describe the experience itself, so I have relied here on what autistic adults have to say on the subject.

I couldn’t stop the headache that built until my eyes wouldn’t focus properly; The thudding pressure between my eyes and at my temples.  My thoughts started swirling like a Jackson Pollock, and I kept finding myself stuck in loops of fragments of sentences. I started unconsciously tapping my forehead with the knuckles of my right hand, whilst my left firmly held the back of my neck.  I felt overwhelmed, and ashamed by that feeling. I felt lost and embarrassed. Thoughts were reduced to feelings (despite feelings being thoughts) I found it hard to do anything beyond feel pain. . . .[6] 

“There is a tipping point. A mental red zone. Once I cross into that zone, there’s no going back. . . .  Panic. Helplessness. Fear. . . .  There is emotion at the starting line, but a meltdown is a physical phenomenon: The racing heart. The shivering. The uncontrollable sobs. The urge to curl up and disappear. The headbanging. The need to hide. The craving for deep pressure. The feeling of paralysis in my tongue and throat. The cold sweat. . . . “[7]

 Autistic children experience meltdowns as a complete loss of control over their minds and bodies.  Here are some children describing their experiences:

“We had a fire drill but nobody told me like i was told people where [were] going to do. I freaked out and started crying and pushing my hands against my ears. When we got outside i just sat down and rocked. I couldnt move. I think it was more of a shutdown. . . . The super loud noise is what made me have a meltdown.”[8]

 “When I was a kid my meltdowns were very violent, I would scream and hit things, crying and all sorts, scratch myself, hit my head against the wall, if anyone touched me it got worse. I would blank out and not remember anything, then finally fall asleep after crying so much I got a headache.”[9]

 “i was EXTREMELY passive [in school]. Every few years I would sort of snap and beat the piss out of someone that had been bullying me for too long. The first incident I don’t remember. All I remember is her . . . shoving my face in the dirt…and then I am in the car and my mom is saying “are you ok? why would you do that? are you OK???” over and over and over. The story is that I broke her arm. I did not believe them until I got back from my suspension and saw her in a cast. . . . I still feel really bad knowing I broke her arm. Who knows if it healed up properly, you know? It may still cause her grief.”[10]

When the meltdown is over, autistic children (and adults) often have no memory of what happened.  If they do remember, they usually feel deeply embarrassed about being so “out of control.”

“The reason why I feel so disappointed with myself after meltdowns is firstly because of the misery I cause others, and secondly because I can hardly believe how little control I have over my emotions…”[11]

“I wish AS [autism spectrum] never involved having meltdowns. Why do they involve meltdowns? I feel so embarrassed of them all the time, but when I get in a mood and a panic about something, I can’t always help myself. They just happen on the spur of the moment.”[12]

“It gets to the point that when I know [a meltdown] is coming, I start to feel ashamed preemptively. I’ve been told off for constantly apologizing, partly because I can’t figure out what to say (communication is conking out) and partly because I’m so ashamed.”[13]

 

Despite what some scientists and teachers may think, it is obvious that no one would choose to have such frightening, often physically painful, and embarrassing experiences.  The bottom line is that autistic children who melt down in school need help—not criticism or punishment.

 

 

 

 

 

 

[1] Tambourine-Man, in the “What Not to Do During a Meltdown—From an Autistic Adult” discussion on the Wrong Planet website:

https://wrongplanet.net/forums/viewtopic.php?t=180194.

[2] E.g., The Encyclopedia of Autism, edited by Fred Volkmar of Yale University, incudes an article by Aaron Stabel on “Temper Tantrums” full of the usual negative stereotypes of children who have “tantrums.”  The Encyclopedia contains no article on meltdowns.  See also Rachel Goldin, et al., A Comparison of Tantrum Behavior Profiles in Children with ASD, ADHD, and Comorbid ASD and ADHD,” Research in Developmental Disabilities 34 (2013), 2669-2675; Abigail Issarraras and Johnny Matson, “Treatment Approaches to Aggression and Tantrums in Children with Developmental Disabilities,” in Johnny Matson, ed., Handbook of Child Psychopathology and Developmental Disabilities Treatment (Cham, Switzerland:  Springer, 2017), pp. 257-68.

[3] Dr. Clarissa Kripke, clinical professor of family and community medicine at the University of California San Francisco, “Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices,” on The Thinking Person’s Guide to Autism website:

http://www.thinkingautismguide.com/2016/08/when-autistic-children-are-aggressive.html.

[4] Geoff Colvin and Martin Sheehan, Managing the Cycle of Meltdowns for Students with Autism Spectrum Disorder (Thousand Oaks, CA:  Corwin, 2012), p. 145.

[5] Sofisol612, in the “What Does a Meltdown Look Like in an Adult Woman” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=337317.

[6] Rhi, “Meltdown,” in the “Autism and Expectations” blog: https://autistrhi.com/2018/11/24/meltdown/.

[7] Cynthia Kim, “Anatomy of a Meltdown,” on the “Musings of an Aspie” blog, December 13, 2012:

https://musingsofanaspie.com/?s=meltdown.

[8] Pokelover14, in the “Did You Ever Have a Meltdown at School” discussion on the Wrong Planet website:

https://wrongplanet.net/forums/viewtopic.php?f=3&t=208692&start=30.

[9] Antisocial Butterfly, in the “Meltdowns? Fall Asleep/Tired Or Biting Meltdowns?” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?f=3&t=63131&start=15.

[10] blackcat, in the “Female Aspies Were You Violent As A Child?” discussion on the Wrong Planet website:

http://wrongplanet.net/forums/viewtopic.php?t=185159.

[11] crouton, in the “Anyone Else Feel Embarrassed/ashamed After A Meltdown?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?t=140790.

[12] Joe90, in the “Anyone Else Feel Embarrassed/ashamed After A Meltdown?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?t=140790.

[13] Callista, , in the “Anyone Else Feel Embarrassed/ashamed After A Meltdown?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?t=140790.

 

The Morality of Fighting Back Against Bullies

Some autistic adults openly admit that they were aggressive as children, and even describe the behaviors they used to engage in at school—kicking, biting, punching, etc.—in their postings on social media.[1]  However, these adults view their past behavior very differently than the (normally neurotypical) researchers who study aggression in autistic schoolchildren.  Researchers have identified a number of risk factors for aggressive behavior:  sensory sensitivities, hyperactivity, irritability and sleep deprivation, poor communication, mood issues, etc.[2]  In most cases, however, autistic adults writing about their own childhood behaviors ignore such factors, and instead identify situational cues for aggression.  They generally remember acting aggressively either when they were taken by surprise (being touched or approached without warning),[3] or—much more frequently—when they were being bullied.

Within the general school population, bullying often causes or contributes to “externalizing behaviors” (negative actions directed towards others) as well as internalizing problems.[4]  Since school bullying has a disproportionate effect on autistic children, it is hardly surprising that externalizing reactions are fairly common within this group.  However, because their victimization so often goes unnoticed, it is difficult to determine whether autistic kids are any more likely than neurotypical kids to respond aggressively when bullied.  What is striking is how often the morality of aggression is debated within the autistic community. Bullying is one of the most frequent topics of discussion for autistic adults on social media, and often these discussions turn into debates over whether fighting back against bullies is morally justifiable.[5]

 

On the one hand, there are those who consider fighting for any reason morally wrong, and who report having refused to fight back against bullies as children:

My sense of morality has always been strong. Even as a 6 year-old, I found it hard to misbehave like the other kids in the classroom because I couldn’t understand why anyone would want to be “bad” on purpose. I also never hit back kids who hit me since it never occurred to me to hurt anyone. The fact that people hurt each other for pleasure has always been a concept I never understood.[6]

I’m a pacifist. I know this is a very extreme view, but no matter how much someone hurt me I would not view it as being right to fight back, (at least not physically). I have been hit and not hit back.[7]

 

In keeping with this viewpoint, some autistic adults recall being aggressive when they were young, and then emphasize how they have matured since then:

I have anger issues though they have improved over the years. When I was in primary school, not only I got angry easily, I was also very violent. I punched someone in the stomach (I still think she REALLY deserved that), I pushed three of my classmates, kicked two and I attacked a 5th grader in 2nd grade. Fortunately I’m not violent anymore. I sometimes become angrier than I’ve ever been in preschool but I’ve never resolved to violence these past few years.[8]

The implication of posts like this is that fighting back is wrong and should be avoided.  Unfortunately, though, if bullying continues after children grow and learn to control themselves, the anger that is no longer turned against others may be turned inward.

I used to [be aggressive] definatly, when I was young (up until the age of 7) I used to bite people when they annoyed me.  Now I am way more likely to hurt myself than anyone else.  I still get angry a lot but it is more just frustration at myself. [9]

Growing maturity and self-control may have prevented violence against others, but they have also led to depression and self-harm (“I am way more likely to hurt myself than anyone else”).

 

On the other hand, there are autistic adults who consider hitting back an appropriate response to bullying.  They may remember choosing violence as the only option available to them, after their schools failed to stop other children from bullying them:

I think part of the reason I hit other kids was because I felt they weren’t respecting me. Sometimes they would ignore what I was trying to say, and I got mad and wanted their attention, so I hit them. It also might’ve been because I wanted to get even with the kids who picked on me, and hurting them seemed like the only way to do that; whenever I told an adult, they usually said something like “I’ll keep an eye on him.” and wouldn’t actually do anything. Sometimes they would take action, but it was rare for that to happen.[10]

They may recall with pleasure that the bullying stopped after they retaliated: “I’ve hit bullies out of anger.  Oddly enough, getting the crap beaten out of them made them not want to bully me anymore.  Shocking![11]  They may defend and even extol violence as the only practical solution to the problems faced in school:

In elementary school, I was bullied pretty horrifically by a couple people at whichever school I was attending, from pretty creative insulting/verbal abuse, to outright attempts at fighting me. I just reacted as violently as I felt was appropriate, and sometimes I got in a lot of trouble. When I look back on it, I think I did the right thing, because by the time high school rolled around, I didn’t really catch any flack from anyone, except for one guy who called me a “fag” but is now a gay porn star. Irony at it’s best. I say, this is how you deal with bullies: beat the ever-loving **** out of them. If they get the better of you, spit blood in their eyes, and while they can’t see, go for the nose. That works as a metaphor for life, as well.[12]

 

Assuming that autistic adults correctly remember their childhood reactions, it would seem, then, that many did not automatically react violently to bullying.  Many simply “took” the abuse, either out of a keen sense of morality or perhaps because they were unable to react fast enough.  Others chose to fight back.  The saddest cases, however, are those who remained non-violent until the cumulative impact of the abuse completely overwhelmed them, and they “snapped.”  This last group will be the subject of the next post.

 

 

[1] Other autistic adults report that they refused to act aggressively in school—see the statements cited below.

[2] “Aggression Against Self and Others.”

[3] See earlier post on “Reactive Aggression.”

[4] For a recent summary of research on this issue, see A. Reijntjes, et al., “Prospective Linkages between Peer Victimization and Externalizing Problems in Childhood:  A Meta-Analysis,” Aggressive Behavior 37 (2011), 215-22.

[5] See, among many possible examples, the following discussions on the Wrong Planet website:

“Why Not Fight Back?” http://wrongplanet.net/forums/viewtopic.php?f=22&t=6907&start=15

“Why Are So Many With AS So Passive And Unwilling To Fight Back?”  http://wrongplanet.net/forums/viewtopic.php?t=53145

“When And How Should I Fight Back?”  http://wrongplanet.net/forums/viewtopic.php?t=344927.

[6] nirrti_rachelle, in the “Autism and Morality” discussion: http://wrongplanet.net/forums/viewtopic.php?t=260199.

[7] sarahstilletos, in the “Why Are So Many With AS So Passive And Unwilling To Fight Back?” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=53145.

[8] Mushroom, in the “Anybody Here Have Serious Anger Issues?” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=33451.

[9] Grim, in the “Anybody Here Have Serious Anger Issues?” discussion: https://wrongplanet.net/forums/viewtopic.php?t=33451.

[10] coalminer, in the “the Did You Struggle in Elementary School More Than in Later Years?” discussion on WrongPlanet:  https://wrongplanet.net/forums/viewtopic.php?t=357368.

[11] pat2rome, in the “Bullying Survey:  Most Teens Have Hit Someone Out of An[ger]” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=141399&p=3156818

[12] JCPHN, in the “Bullying” discussion on the AspiesCentral website:  https://www.autismforums.com/threads/bullying.5414/page-4.

The Impact of Bullying: Internalizing Disorders

Trigger warning:  bullying, anxiety, depression, PTSD, suicidal ideation, and suicide attempts

Many autistic adults have written about the long horrors of their school days.  They remember (unfortunately, they sometimes can’t STOP remembering) being poked and prodded, scratched and kicked, punched, doused with noxious liquids, and pushed down stairs.  They remember being choked unconscious, set on fire, waterboarded, stabbed with knives.  They remember being the one not invited to the birthday party, not picked for the sports team, not wanted as partner for a class project.  They remember sitting alone on the bus, sitting alone at lunch, standing alone on the playground.  More than anything, they remember the mockery and humiliation, the insults and cruel imitations, the echoes of savage laughter.  And this is why there was such a visceral reaction when speech pathologist Karen Kabaki-Sisto published a piece called “10 Perks Kids with Autism Get From Bullying” on the Autism Daily News, in October, 2015.[1]  Kabaki-Sisto presumably meant well (something along the line of “when life gives you lemons, make lemonade”), but her piece was jarringly tone deaf to actual autistic experience.  Most autistic adults (and many neurotypicals, including myself) who read “10 Perks” were outraged that anyone would suggest that their traumatic experiences and those of their children had any “positive” side at all.

The Impact of Bullying Internalized

Bullying causes such severe distress in schoolchildren that it may cause or exacerbate psychological disorders, especially what psychologists call “internalizing” disorders (ones that are not easily seen by others because emotional distress is directed inwards).  These include loneliness, anxiety, poor self-image, depression, suicidal ideation and suicide attempts.  Prolonged bullying (the type most autistic kids endure) erodes trust in other people, leaving the victims feeling alone and helpless.  By-standers fail to help, friends drop away, school staff refuse to believe reports of bullying, or give useless advice.  Responding to Kabaki-Sisto, Jennifer reports that her bullying experiences left her with

A complete inability to trust others: This is due to never knowing who is actually your friend or who is setting you up to be the butt of a joke and/or using you for their own personal gain. You also realize your peers don’t give a damn about you enough to stand up for you, when they see you being harassed, made fun of, and physically abused by others.[2]

Kabaki-Sisto had suggested that bullying might lead to increased independence for autistic children, but Purpleaspie did not view that as a positive thing:

In a twisted way bullying did increase my independence, as it taught me that I couldn’t rely on anyone to help me, certainly not the school principal or vice-principal or any of the teachers or counsellors, so I had to depend only on myself.[3]

Lack of trust often leads to increased social withdrawal: “to avoid exposing yourself to betrayal in the first place, or because you lose the confidence and self-esteem you might have had before.”[4]  Kabaki-Sisto had suggested that being bullied might lead to new friendships, but this is not what autistic adults remember:

A bullied child will feel isolated from his or her peers, not drawn to new peers. When social interactions – already a situation that makes those with autism nervous – becomes associated with all of the negatives of bullying, a child with autism is more likely to withdraw within himself or herself and not try to make new friends.[5]

Social withdrawal, however, only worsens the situation, as it removes even the tiny amount of social support that might be have been there before, making bullying even easier.

Lack of trust can result in intense anxiety.[6]  When Kabaki-Sisto suggested that bullying might make autistic children more aware of the people around them, one autistic adult described the kind of awareness that might result:

. . . she will grow to be afraid of everyone around her. She will be constantly afraid the next person walking down the street will take umbrage with her behavior. She will be afraid of doing anything that isn’t “normal,” and will question her own behaviors and thoughts to the point of near nervous breakdown.[7]

School rapidly becomes a place of terror for children who are bullied.  School refusal is a common outcome:  Alex Forshaw is not alone in having bolted when being told it was time to go to school.[8]  Others, as we have already seen, may act up in school on purpose, to get suspended and thus avoid being there.  Even those who can bring themselves to go to school suffer from debilitating fear.  In ninth and tenth grade, my own autistic daughter used to vomit every single morning before going off to face the bullies.  By the second part of tenth grade, she could only go at all if she took along a tiny stuffed animal, hidden in her pocket, to “be her friend” at school, and her arms were raw from anxiety-induced scratching.[9]  IndieSoul used to “shake and sweat from anxiety in school and hide in the bathrooms during recess.”[10]  Another victim reports fainting “just out of fear.”[11]  Anxiety is already high in most autistic individuals, but years of bullying in childhood ups the ante, laying the foundations for anxiety disorders continuing into adulthood. IndieSoul continues: “I honestly don’t know if I’ll ever be completely rid of the anxiety.”[12]

Social anxiety and panic disorders linked to bullying during childhood are very common among autistic adults, but particularly severe or long-lasting bullying may also result in post-traumatic stress disorder.[13]  To my knowledge, no researcher has examined how many autistic adults suffer from PTSD as a result of school bullying, but many individuals report having been professionally diagnosed with the disorder, and some describe their symptoms online.  Flashbacks, or moments when remembered trauma seems to be happening in the present, are common: “Lately I’ve been having flashbacks of the days when I got bullied in school. They range from the typical teasing, to having things thrown at me, gossiped about, falsely accused of vandalism, being called mentally challenged, ‘roasted’ by the entire classroom when I had done nothing wrong or didn’t say anything at all, and eventually ignore by adults when I complained and after that, beaten up.”[14]  PTSD produces many other symptoms beyond flashbacks.  Jellybean reports: “I suffer from panic attacks, palpitations, hallucinations, nightmares, physical sickness (rare) and have an overactive responce to potential dangers, even if the ‘danger’ doesn’t really exist. It is absolutely horrific to suffer like this.[15]  Individuals suffering from such debilitating symptoms find it difficult, if not impossible to achieve a decent quality of life.

The most dangerous lesson autistic (and other) children learn from bullying, however, is that they deserve it.  This is what the bullies tell them, this is what parents and school staff may inadvertently reinforce, this is what they eventually internalize—that they are somehow less than other people, unworthy of decent treatment, inherently flawed and deserving of punishment.  “The assistant principal at my old school told me it was my fault I was being bullied and that I should change what ever it was I was being bullied about.”[16]  “. . . when I was made fun of pushed around etc in school I always thought I deserved it because I ‘asked’ for it, not being normal etc.”[17]  By high school, Kirsten reports, “my self-esteem had been damaged to the point that I couldn’t even conceive of the notion of self-love. In the back of my mind, I thought I was slow, stupid, ugly, a loser, and any other unwanted adjective I could think of.”[18]

Children who have absorbed these lessons often develop clinical depression: “I got bullied at school and was depressed all of middle school/high school.”[19]  “I got a major clinical depression because of bullying.  I’m on meds now.”[20]  Depression itself is severely debilitating, hindering both social and academic achievement, but it also often leads to thoughts of suicide—one study has found that suicidal ideation is 28 times more common among autistic than among neurotypical children. The problem appears to be not autism itself, but the experience of being bullied:  the same study found that children with autism spectrum conditions who have been bullied are approximately three times more likely to think about or actually attempt suicide than children with autism who have not been bullied.[21]  A fourteen-year-old with autism who had already made two suicide attempts reported that the bullying “made me feel sad, depressed. It made me feel like people don’t care anymore because when I got bullied I felt like well if they cared about me they would have done something.”[22]  Bullies, and especially cyberbullies often encourage suicide with messages such as “you should just go kill yourself” and “everyone would be happier if you were dead,”[23] but some autistic children simply find their lives in school unbearable and look to death as a relief. “I would have killed myself if my parents didn’t take me out of public school.  The bullying was that bad.[24] Not only suicidal thoughts, but also suicide attempts and successful suicides are more common among autistic than neurotypical children.[25]If I had not been bullied at school I would have had a refuge.  Not having that?  I tried to kill myself a few times and failed.  I didn’t get found or helped, I just didn’t do it right.  I am glad of that but telling me that I am stronger because of this [as Kabaki-Sisto did] is an insult to my intelligence, common sense, and every autist on the planet.”[26]

Ultimately, after years of bullying, autistic children—like other bullied children—may simply lose their sense of self.  However happy, engaged, and enthusiastic they may have been as young children, their experiences at school have turned them into angry, fearful, depressed and bitter adults.  As the author of one response to “10 Perks” asks

Am I a better person for [the bullying]?  How would I know . . . the girl you are talking about died thirty years ago and again and again yet she never gets to rest.[27]

 

 

 

[1] It was later pulled from the Autism Daily News website because of the outcry against it.

[2] Jennifer, “A Response to the Ten Perks Children with Autism Get From Bullying,” on the Autistic Giraffe Party Facebook page: https://www.facebook.com/autisticpartygiraffe/posts/429266380617441.

[3] “There Are No Perks to Being Bullied,” on the Purpleaspie blog:  https://purpleaspie.wordpress.com/2015/10/16/there-are-no-perks-to-being-bullied/.  See also Ian Nicholson, “Ten Things THIS Autistic Kid Learned from Being Bullied,” on the Digital Hyperlexic blog:  https://thedigitalhyperlexic.wordpress.com/2015/10/15/ten-things-this-autistic-kid-learned-from-being-bullied/.

[4] S.M. Neumeier, “Bullying is abuse, and abuse has no perks,” on the Silence Breaking Sound website: https://silencebreakingsound.wordpress.com/2015/10/15/bullying-is-abuse-and-abuse-has-no-perks/.

[5] TechyDad, “Perks From Being Bullied?  I Don’t Think So!” on the TechyDad blog:  http://www.techydad.com/2015/10/perks-from-being-bullied-i-dont-think-so/.

[6] On the high levels of anxiety among autistic children and adolescents overall, see J. Wood, and K. Gadow, “Exploring the Nature and Function of Anxiety in Youth with Autism Spectrum Disorders,” Clinical Psychology: Science and Practice 17 (2010), 281-292.

[7] J.T. Dabaggian, “Why Karen Kabaki-Sisto’s 10 “Perks” for bullied autistic kids is bull.” Medium magazine, 10/16/15:   https://medium.com/@jtdabbagian/why-karen-kabaki-sisto-s-10-perks-for-bullied-autistic-kids-is-bull-7f14d97aabf4.

[8] Alex Forshaw, “Bullying:  Resurrecting Buried Trauma,” on the My Autistic Dance blog:  https://myautisticdance.blog/2015/10/18/bullying-resurrecting-buried-trauma/.

[9] We home-schooled her for her junior and senior years, because we just couldn’t watch her suffering anymore.

[10] IndieSoul, in the “Aspergers and Social Anxiety Disorder,” on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=202798.

[11] Iknewyouweretrouble, in the “Were You Bullied in School?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?f=32&t=231102&start=15; see also franknfurter’s contribution to the “What Were You Like in Elementary School?” discussion:  “i also had panic attacks a lot, and was bullied, it was not a time i care to remember, only emotions about elementary/primary school i remember feeling was anxiety” (https://wrongplanet.net/forums/viewtopic.php?t=226220).

[12] IndieSoul, in the “Aspergers and Social Anxiety Disorder,” on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?t=202798; see also Oten’s contribution to the “Were You Bullied in School?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?t=231102; NerdyKid’s contribution to the “People with Aspergers Don’t Care About Being Bullied” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=149165; Feminist Aspie, “10 Downsides Kids With Autism Get From Bullying (because apparently it isn’t obvious),” on the Feminist Aspie blog:  https://feministaspie.wordpress.com/2015/10/15/10-downsides-kids-with-autism-get-from-bullying-because-apparently-it-isnt-obvious/.  See also NerdyKid’s contribution to the “People with Aspergers Don’t Care About Being Bullied” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=149165.

[13] School bullying has been identified as one potential cause of PTSD in the general population:  T. Idsoe, A. Dyregrov, and E. Idsoe, “Bullying and PTSD Symptoms,” Journal of Abnormal Child Psychology 40 (2012), 901-11; T. Gumpel, “Prolonged Stress, PTSD, and Depression Among School Aggressors and Victims,” Journal of Aggression, Maltreatment, and Trauma 25 (2016), 180-96.  Little research has been done on school bullying and PTSD among autistic individuals; see only C. Kerns, C. Newschaffer, and S. Berkowitz (2015). “Traumatic Childhood Events and Autism Spectrum Disorder,” Journal of Autism and Developmental Disorders 45(2015), 3475-3486.  The authors include bullying as one of the potential sources of traumatic stress.

[14] Ameriblush, in the “Remembering years of bullying” discussion on the Aspies Central website:

https://www.autismforums.com/threads/remembering-years-of-bullying.22944/#post-456806.

[15] Jellybean, in the “Complex PTSD As Result of Severe Bullying” discussion on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=47533&start=45.

[16] This_Amoeba, in the “People Normalizing Bullying You Got As A Child” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=336587.

[17] Daedal, in the “People with Aspergers Don’t Care About Being Bullied” discussion on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?t=149165.  See also J.T. Dabaggian, “Why Karen Kabaki-Sisto’s 10 “Perks” for bullied autistic kids is bull.” Medium magazine, 10/16/15: https://medium.com/@jtdabbagian/why-karen-kabaki-sisto-s-10-perks-for-bullied-autistic-kids-is-bull-7f14d97aabf4.

[18] Kirsten, “Bullying . . . The Real Problem . . . An Aspergian Woman’s Perspective”:  http://wrongplanet.net/bullying-the-real-problem-an-aspergian-womans-perspective/.

[19] IHaveAspergers,” in the “Is Suicide Common In People with Aspergers?” discussion on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?t=280538.

[20] hello07, in the “People with Apergers Don’t Care About Being Bullied” discussion on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?t=149165.

[21] S. Mayes, A. Gorman, J. Hillwig-Garcia, and E. Syed, “Suicide Ideation and Attempts in Children with Autism,” Research in Autism Spectrum Disorders, 7 (2013),109–119, 2013.

[22] Cyberbullying Research Center, “Helping Kids with Autism Spectrum Disorder When Bullied or Cyberbullied”:  https://cyberbullying.org/helping-kids-autism-spectrum-disorder-bullied-cyberbullied.

[23] Autistic students are often targeted with such messages: see the “Why Are People Telling Me to Kill Myself?” and “I Was Jus Bullied, Called a Retard & Told To Go Kill Myself” discussions on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=341134, and http://wrongplanet.net/forums/viewtopic.php?t=299688.

[24] PunkyKat, in the “People With Aspergers Don’t Care About Being Bullied” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=149165 .

[25] O. Shtayermann, “Peer Victimization in Adolescents and Young Adults Diagnosed with Asperger’s Syndrome:  A Link to Depressive Symptomatology, Anxiety Symptomatology, and Suicidal Ideation,” Issues in Comprehensive Pediatric Nursing 30 (2007), 87-197; Benjamin Zablotsky, Catherine Bradshaw, Connie Anderson, and Paul Law, “The Association between Bullying and the Psychological Functioning of Children with Autism Spectrum Disorders,” Journal of Developmental and Behavioral Pediatrics 34 (2013), 1-8; S. Mayes, A. Gorman, J. Hillwig-Garcia, and E. Syed, “Suicide Ideation and Attempts in Children with Autism,” Research in Autism Spectrum Disorders, 7 (2013),109–119, 2013; Danielle Ung, et al., “The Relationship between Peer Victimization and the Psychological Characteristics of Youth with Autism Spectrum Disorder,” Research in Autism Spectrum Disorders 32 (2016), 70-79.  See also the personal accounts of Hello07, in the “People With Aspergers Don’t Care About Being Bullied” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=149165; IHaveAspergers, in the “Is Suicide Common In People With Aspergers?” discussion on the same website:  http://wrongplanet.net/forums/viewtopic.php?t=280538.

[26] Kateryna Fury, “Why Bullying Isn’t Healthy for ANYONE,” on the Textual Fury blog: http://snip.ly/oLlW#https://textualfury.wordpress.com/2015/10/15/why-bullying-isnt-healthy-for-anyone-a-post-intended-for-karen-kabaki-sisto-trigger-warning-for-everyone-else-also-i-cussed-a-bit/.

[27] “On the ‘perks’ of bullying . . . ,” on the Antigenic Self blog: http://theantigenicself.tumblr.com/post/131203829795/on-the-perks-of-bullying.

Bullying In Schools

Trigger warning:  descriptions of bullying

 

I feel like the public school system failed me.”[1]

 

If you are a school bully looking for an easy target, you will soon discover that the nearest kid with autism fits your needs perfectly. Being generally naïve about social customs and interactions, children with autism are easily manipulated or tricked into dangerous situations.  Because of their unusual behaviors (and sometimes by personal preference), they tend to be socially isolated, leaving them with no protective support network of peers.  Teachers and other authority figures may mistrust or even dislike them, and so often fail to back them up when they report being bullied (see below).[2]

Scholars who have researched this subject all agree that students with autism spectrum conditions are disproportionately affected by bullying.  Depending on their definitions of bullying, the samples of children they study, and their methodology, their estimates of how many autistic kids have experienced bullying within a single year range from a low of 57% to a high of 94%.[3]  Some have concluded that children with autism are four times more likely to be targeted than neurotypical kids, and that 40% of autistic kids are bullied daily, compared with only 15% of neurotypical kids. Children with autism are also more likely to be targeted than other children with special needs (except perhaps for those with ADHD—another “unpopular” group at school) or obese children (also common targets for bullies).[4]  Having been bullied, some children with autism then go on to become bullies themselves, but only at about the same rate as neurotypical kids who have been bullied.  However, if they have both autism and ADHD, the likelihood of their becoming bullies in response to bullying increases. [5] 

Most U.S. schools now have anti-bullying programs, but few of these programs are effective.  (One exception is a program, developed in Finland but now being adopted in the United States, that targets by-standers[6].)  Overall, autistic students who have been bullied report receiving little support from their schools.  It is possible that busy teachers genuinely don’t see the cruelty perpetrated in their classrooms.  However, victims—to whom the situation is painfully obvious—often find it hard to imagine that their teachers don’t see what’s happening, so they conclude that the teachers simply don’t care: “They did absolutely nothing. Ignoring it was their best policy.”[7]  This perceived (and sometimes real) indifference adds an additional layer to the trauma the victims of bullying are already suffering.

Even when bullying is formally reported to the school authorities, the victim’s testimony may not be believed.  (My own family had to deal with this problem several times.)  If there are two different accounts of what happened, the school will often refuse to take a side: “I swear on my grave I never lied about anything. But when it came to authority, I’d report a kid, the principal or vice principal would do nothing. They would tell me how they talked to the other kid and listened to my story and didn’t know who was lying.[8][9] “[The teachers’] favorite mantra was always ‘it’s their word against yours.’”[10]  However, since those who bully generally have a stronger support network than their autistic victims, they may actually find it easier to get their accounts corroborated.  This is especially the case with the “popular” kids, whom adults may perceive as “good people,” who “would never engage in bullying.”  And so, in far too many cases, the school actually accepts what the bullies have to say: “when I told a co-ordinator that 2 girls in my class were bullying me, her ‘solution’ was to call the girls up to her office and ask them in front of me if they were bullying me. Of course they told lies and the situation got worse after that . . .[11]  “ . . . .  when I reported it to the teachers, ‘sorry we have to go with majority on this’.[12] In cases like these, the situation either fails to improve or more commonly gets worse.  Sometimes the person who has been bullied gets punished (most often for retaliating, but sometimes even for reporting) and the bully gets off scot free.[13]  In Arkansas, for example, a student who reported being bullied to his teacher was called a “tattle-tale,” and forced to sit in the “time-out” chair.[14]  At this point, a victim will simply stops looking to the school for support: “I got tired of teachers never doing anything about the bullying so I quit telling my teachers about the bullying.”[15]

To make matters worse, the adults in charge of schools are sometimes bullies themselves.  Leaving aside the sometimes abusive use of physical restraint and seclusion, and other institutional forms of control and discipline (which will be the subject of a later post), individual teachers, aides, coaches, and school administrators sometimes victimize their students in appalling ways.  In Georgia, one teacher resigned, after a school determined she had repeatedly  sprayed Lysol into her student’s face.[16]  In Texas, a group of teachers gave a student awards for being “Most Gullible” and a “Drama King” at the end-of-year awards ceremony.[17]  In Michigan, a teacher recorded and distributed a video of herself and the school principal taunting a child who had gotten stuck in a chair.[18]  I come from a family of public school teachers, and I am very sympathetic to the difficulties teachers today face in the classroom, but there is no excuse for this kind of behavior.  Never.  Any.  Excuse.

 

 

 

[1] IdahoRose, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=146798.

[2] On the reasons behind bullying autistics, see Rebekah Heinrichs, Perfect Targets:  Asperger Syndrome and Bullying (Shawnee Mission, KS:  Autism Asperger Publishing, 2003), as well as the articles cited below.

[3] M. C. Cappadocia, et al., “Bullying Experiences Among Children and Youth with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 42 (2012), 267 and 271; Neil Humphrey and Judith Hebron, “Bullying of Children and Adolescents with Autism Spectrum Conditions:  A ‘State of the Field’ Review,” International Journal of Inclusive Education 19 (2015), 849.

[4] For comparison with neurotypical children and children with other special needs, see Jessica Schroeder, et al., “Shedding Light on a Pervasive Problem:  A Review of Research on Bullying Experiences Among Children with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 44 (2014), 1522-26; Neil Humphrey and Judith Hebron, “Bullying of Children and Adolescents with Autism Spectrum Conditions:  A ‘State of the Field’ Review,” International Journal of Inclusive Education 19 (2015), 849.  For comparison with obese children, see Ryan Adams, Somer Bishop, and Julie Taylor, “Negative Peer Experiences in Adolescents with Autism Spectrum Disorders,” International Review of Research in Developmental Disabilities 52 (2017), 75-107.

[5] Jessica Schroeder, et al., “Shedding Light on a Pervasive Problem:  A Review of Research on Bullying Experiences Among Children with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 44 (2014), 1522.  Cynthia Kim offers an autobiographical account of how she went from victim to bully:  Nerdy, Shy, and Socially Inappropriate:  A User Guide to an Asperger Life (London:  Jessica Kingsley, 2015), p. 14-15.

[6] A. Karna, M. Voeten, et al., “A Large-Scale Evaluation of the KiVa Antibullying Program, Grades 4-6,” Child Development 82 (2011), 311-30.

[7] LeeAnderson, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=146798.

[8] Pandora_Box, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=146798.

[9] Pandora_Box, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=146798.

[10] Verdandi, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website:

http://wrongplanet.net/forums/viewtopic.php?t=146798.

[11] CreativeInfluenza, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=146798.

[12] Pandora_Box, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=146798.

[13] Some examples of the negative consequences of reporting:  MightyMorphin, in the “If You Were Bullied At School . . . “ discussion on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=204456&start=45;

JoeDaBro, in the “My School Hates Autism” discussion on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?t=231793; Sparrow Rose Jones, No You Don’t: Essays from an Unstrange Mind (Self-published, 2013), p. 94.

[14] “Parents of Child with Autism File Bullying Lawsuit Against Omaha, Ark. School District,”  KY3 TV, December 12, 2017:  http://www.ky3.com/content/news/Parents-of-child-with-autism-file-bullying-lawsuit-against-Omaha-AR-School-District–463754753.html.

[15] ladyelaine, in the “Why School Sucked” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=357585&start=45.

[16] Carl Willis, “Mother Says Son Was Sprayed with Lysol by Teacher,” WSBTV, November 14, 2017: http://www.whio.com/news/national/mother-says-son-with-autism-was-sprayed-with-lysol-teacher/MoQdOQjYHI7i4NA35prrLJ/.

[17] Kristie Smith, “Educators Should Never Set Students Up to Be Bullied,” Dallas News, June, 2014:  https://www.dallasnews.com/news/special-needs/2014/06/09/educators-should-never-set-students-up-to-be-bullied.

[18] Lee Moran, “See It:  Teacher Films Herself, Principal Teasing Autistic Boy Stuck in Chair,” New York Daily News, February 26, 2014:  http://www.nydailynews.com/news/national/teacher-films-principal-teasing-autistic-boy-article-1.1702106.

[19] Tharja, in the “Bullied By Teachers???” discussion on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?f=14&t=98154&start=75

[20] thechadmaster, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=146798.

 

Reactive “Aggression”: What Autistic People Have to Say

Scientists who study large populations have uncovered several risk factors for aggressive behavior in autistic children—lack of sleep, poor social and communication skills, irritability, etc. (see my last post).  In contrast, autistic people are less likely to focus on general risk factors than to describe their own personal experiences during childhood:  the specific situations in which they threatened or injured others, and the way they felt at the time.  Nevertheless, there are many commonalities among their experiences, commonalities which do not always correspond with what scientists have described.[1]  For example, while scientists tend to assume that all aggression is intentional, many autistic people report having engaged during childhood in unintentional aggression.  One type of unintentional aggression is what I call reactive “aggression”—and I am using quotation marks because I am not sure that what is described below truly qualifies as aggression at all.

 

Reactive “Aggression”

I have an instinctive fear of snakes.  It’s not a phobia.  If I have time to think about it, I can talk about and look at snakes.  I even petted a snake once, to show my kids that reptiles aren’t dangerous.  But if I am out walking and a harmless little garter snake wiggles across the sidewalk in front of me, I immediately find myself jumping a foot in the air and then running away.  And if—God forbid—a snake were to fall out of a tree onto my shoulder, the poor thing would get whacked hard to get it off me, even though I have no conscious intention of hurting it. My reaction is purely instinctive.

Many autistic people report a similar response to being touched by other people, which they may find intensely painful: “The pain I feel when someone touches me is like feeling needles that sting my flesh.”[2]  Or if touch is not exactly painful, it may still be intolerable in other ways:

I don’t feel pain but I cannot tolerate pressure, which is what I feel physically when touched, to the point where my brain perceives being touched as being crushed, and transmits a threat response. I also feel a complete sense of psychological invasion as others have said, and I get an immediate irresistible sense of nononono that I have to get away from. Can’t abide being touched.[3]

Averse to touch, autistic people may be able to avoid lashing out if they get some advance warning.  But if they are taken by surprise, they respond instinctively, in the same way I would respond to a snake suddenly landing on me:

 

i have often hit people who have touched me without warning, particularly if they touch me from behind, a sharp elbow flies backwards. however this is not advisable as people take offense to it & some hit back! it is a reflex reaction for me, i have no concious control over it.[4]

 

 

It is common for autistic students to hit out wildly when they get touched, and schools often interpret these reactive behaviors as aggressive.  The result is punishment, usually in the form of suspension or (for repeated incidents) expulsion:

 

I got suspended for hitting kids when they got too close (I can feel people’s energy or “chi” when I get close to them or they get close to me and it is physicaly painful) [5]

However, autistic writers often remember these childhood reactions as uncontrollable:

Until about the age of 12 or 13 I’d regularly scream and hit people for touching me. Not so bad these days but I still hate unwanted touch. When I was younger kids at school thought it was hilarious to poke me until I lost my temper. Being poked is extremely painful, I’m very sensitive to touch. I try telling people this and they think I’m exaggerating.[6]

Did any of you have a problem as a kid where if a kid hurt you (even unintentionally), you would hit them without thinking? I used to get suspended multiple times year for punching other kids because they pinched me between a desk or bumped me while playing soccer. It was a reflex I was unable to control until I was older.[7]

As both of the last quotations indicate, some children learn to control their reactions as they grow older.  However, even for adults this may require a tremendous amount of effort:

 

if someone touches my face, my cheek especially, i can barely control myself from hitting that person. being stuck in a slow moving crowd, i feel trapped and want to scream my lungs out. i feel like pushing people aside violently, i don’t do it because it’s wrong, but i slam my fist in an open palm and growl like an animal. i go crazy and no one notices.[8]

 

Children in general have a much more limited ability to maintain control over their reflexes.

 

 

The reflexive childhood “aggressor” usually does not intend to hurt anyone, knows perfectly well that hitting others is wrong, and after the fact often feels very badly about the way they have behaved:

When I was a kid-I was at a friends house when a friend of his . . . came up from behind and grabbed me-now I do not like to be touched or grabbed from behind-now I know its because of AS-I did not know it was him and I turned around and punched who ever it was in the mouth and it was him-he ran crying and I felt so bad that I hurt this boy who was just playing and meant no harm but I thought I was being attacked and hit this poor kid-I felt really bad,so bad I pledged I would never hurt anyone for any reason ever again and I still live up to that to this day.It still upsets me to think about the incident and the thought of hurting an innocent,harmless person.[9]

Should reactions which are instinctive, difficult to control, engaged in with no intent to harm, and often deeply regretted afterwards be consider “aggression”?  I would have to say “No.”  Certainly there will be a need for behavior interventions, to help these kids learn not to react so strongly to unexpected touch, but punishment seems inappropriate in such cases.

 

 

 

[1] In what follows, I will be drawing primarily on posts from the Wrong Planet website, which has thousands of autistic subscribers.  Like other quick posts on social media sites, these may contain errors of spelling and grammar.  This is simply the nature of such posts, which are usually composed in a hurry.

[2] Kairi96, in in the “I Feel Pain When Other People Touch Me” discussion:

http://wrongplanet.net/forums/viewtopic.php?t=219950.

[3] C2V, in the “I Feel Pain When Other People Touch Me” discussion:

http://wrongplanet.net/forums/viewtopic.php?t=219950.

[4] Sally, in the “About Hating Touch..” discussion: http://wrongplanet.net/forums/viewtopic.php?t=48437.

[5] PunkyKat, in the “Aspies—Ever Get Suspended/Expeled” discussion:

http://wrongplanet.net/forums/viewtopic.php?f=14&t=83101.

[6] Squirsh, in the “Do You Get Irritated When People Touch You?” discussion: http://wrongplanet.net/forums/viewtopic.php?t=169499.

[7] bluecurry, in the “What Were You Like in Elementary School” discussion:  https://wrongplanet.net/forums/viewtopic.php?t=226220.

[8] Felinesaresuperior, in the “Odd Things That Make You Feel Irrationally Angry” discussion:

https://wrongplanet.net/forums/viewtopic.php?t=189358.

[9] Radiofixr, in the “Did Anyone Else LIKE Being Bullied?” discussion: http://wrongplanet.net/forums/viewtopic.php?t=129369.

Aggression Against Self and Others: What the Scientists Have to Say

Autistic students have, in the past, broken their teacher’s arms, knocked out their teeth, and even given them concussions.  There have been incidents in which students have banged their own heads against walls, scratched their arms until they bled, and bitten their fingers.  There have also been incidents in which their classmates have been injured.  So schools are rightly concerned about autistic kids engaging in behaviors—self-injury, punching, biting, and kicking—that are potentially dangerous to themselves or others.

Nevertheless, schools cannot treat every autistic child as a time-bomb, ready to explode at any moment.  There are certainly some students on the autism spectrum who must be treated with great care, but there are also many who have outbursts only under extreme circumstances, and still others who pose no threat at all.  Unfortunately, the research on the prevalence of aggression in this population remains limited, and what exists has various weaknesses.  Nevertheless, it is worth reviewing, because it shows that “the violent autistic child” is not nearly as common as the general public, as well as many teachers and school administrators, assume.

Estimates of “self-injurious behavior” (SIB), for example, have been skewed by the populations sampled.  One group of researchers looked at 250 children and teens with autism who were enrolled in genetic studies at the Hospital for Sick Children in Toronto, Canada.  They found that 52.3% had engaged in SIB at some point in their life.[1]  This study was often cited in the years after its publication in 2012, and the idea that more than half of autistic kids injured themselves became widely accepted.  In 2016, however, a different group of scholars published the results of their research on more than 8,000 autistic children tracked by the Autism and Developmental Disabilities Monitoring Network in the United States.  They pointed out that the 2012 study, conducted in a hospital, had “over-sampled” kids with challenging behaviors and major impairments.  The 2016 study placed the percentage of autistic kids who self-injured at around 27.7%.  This is still a significant number, but it is only about half that of the earlier, widely-cited study.[2]

Research on aggression against other people has been complicated by disagreements about terminology (the authors of one study noted that other researchers were reluctant even to use the term “aggression”[3]) and weakened by failure to distinguish clearly between the prevalence and persistence of different forms of aggression.  One study, based on a fairly large sample of children, concluded that 68% had at one time or another demonstrated aggression against their care-givers, and 49% had at one time or another been aggressive towards non-caregivers.[4]  It should be noted, however, that these figures covered the children’s entire lifetime, including the period when they were toddlers (who generally tend to do a fair amount of hitting and kicking, even if they are neurotypical.)  When the researchers examined behavior at the time of the study, they found that 56% of the autistic children sampled were “currently” aggressive towards their caregivers, while 32% were aggressive towards non-caregivers.

The authors of this study focused on these general numbers, which they claimed showed that the prevalence of aggression among autistic children was “high.”  However, when they broke down their figures still further, to look at the prevalence of different kinds of violence, it turns out that a much smaller number (35.4% of all the kids in the study) were currently engaged in what the researchers called “definite aggression”—hitting, kicking, punching, etc.  The other children in the “aggressive” category (roughly 25% of the total) were currently practicing only “mild aggression,” defined as playing roughly, verbally threatening other people, or lashing out after being provoked.  Most importantly, 39.8% of the sample showed no aggressive behavior at all.   lt turns out, then, that of the autistic kids in this study, more were currently avoiding all aggressive behaviors than were involved in “definite aggression.”  If we combine the non-aggressive and mildly aggressive categories, it turns out that 65% of the sample studied actually seem pretty similar to “normal” kids.  However, in practice it is quite difficult to know how autistic aggression compares with neurotypical aggression, since studies on aggression in autism generally involve no control group of non-autistic children.[5]

A number of researchers have examined the “risk factors” for self-injurious and aggressive behaviors.  In terms of SIB, one study found that abnormal sensory processing was the most important predictor of self-injury[6]  Other researchers conclude that SIB is particularly common not only in those with abnormal sensory processing, but also those with regressive forms of autism, irritability, hyper-activity, mood issues, sleep issues, and severe communication limitations.[7]  There are some indications that SIB may decline as communication improves over time.[8]  Factors associated with aggression against others include youth (aggressive behavior declines with age among autistic as well as neurotypical children), social and communication problems, higher levels of “repetitive behaviors” (stimming), and—oddly enough—higher family income.[9]  A very high percentage of autistic children and adolescents (50-80%) suffer from sleep problems.  One recent study found a particularly significant correlation between lack of sleep and various problem behaviors, including hyperactivity, irritability, and physical aggression in autistic youth.[10]

The scientific evidence, then, suggests that a significant minority of young people with autism will engage in self-injurious behaviors (27.7%) and significant aggression against others (35.4%).  (A further area of concern is “meltdown” behavior, which I will address in another post.)  According to scientists, the individuals who engage in these behaviors tend to be younger children, those who have gone through early regression, those who are irritable and hyperactive due to poor sleep, those unable to communicate in other ways, and those with the kinds of sensory processing that make the world unpredictable and often painful.  Teachers and administrators would do well to consider and try to mitigate these factors before they condemn autistic children who “act out.”

 

 

 

[1] Emma Duerden, Hannah Oatley, Kathleen Mak-Fan, et al., “Risk Factors Associated with Self-Injurious Behaviors in Children and Adolescents with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 42 (2012), 2460-70.

[2] Gnakub Soke, Steven Rosenberg, Richard Hamman, et al., “Brief Report:  Prevalence of Self-Injurious Behaviors among Children with Autism Spectrum Disorder:  A Population-Based Study,” Journal of Autism and Developmental Disorders 46 (2016), 3607-14.

[3] Cristan Farmer and Michael Aman, “Aggressive Behavior in a Sample of Children with Autism Spectrum Disorders,” Research in Autism Spectrum Disorders 5 (2011), 317-23.

[4] Stephen Kanne and Micah Mazurek, “Aggression in Children and Adolescents with ASD:  Prevalence and Risk Factors,” Journal of Autism and Developmental Disorders 41 (2011), 926-37.  The sample was made up of children enrolled in a multi-university research study on autism, which—like the hospital study mentioned above—probably “oversampled” those with challenging behaviors.

[5] There are many studies of aggressive behavior among children who have suffered trauma, who have been raised in poverty, etc.  I have found it difficult to find estimates for aggression among neurotypical children as a whole.  And in any case, different measures are used in studies on autistic and studies on non-autistic children, which makes comparisons virtually impossible.

[6] Emma Duerden, Hannah Oatley, Kathleen Mak-Fan, et al., “Risk Factors Associated with Self-Injurious Behaviors in Children and Adolescents with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 42 (2012), 2460-70

[7] G. Soke, S. Rosenberg, R. Hamman, et al., “Factors Associated with Self-Injurious Behaviors in Children with Autism Spectrum Disorders:  Findings from Two Large National Samples,” Journal of Autism and Developmental Disorders 47 (2017), 285-96;

[8] Jeffrey Danforth, “Self-Injurious Behavior (SIB),” in Fred Volkmar, Encyclopedia of Autism Spectrum Disorders (New York:  Springer, 2013), 110-39.

[9]  Stephen Kanne and Micah Mazurek, “Aggression in Children and Adolescents with ASD:  Prevalence and Risk Factors,” Journal of Autism and Developmental Disorders 41 (2011), 926-37.  One might speculate that aggressive behaviors are attributed to factors other than autism in children with lower family incomes.

[10] Micah Mazurek and Kristin Sohl, “Sleep and Behavioral Problems in Children with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 46 (2016), 1906-15.

FBAs and BIPs

Teachers often want to move autistic students whose behavior they find disruptive out of their ordinary classrooms and into special education classrooms, or classrooms just for students with autism in the same school, or even into separate schools.  These segregated environments do offer smaller class size and more adult supervision.   However, they almost never provide the same academic opportunities as mainstream classrooms—separate is far from equal.  This is why the Individuals with Disabilities Education Act (IDEA) requires that students with autism be taught in the least restrictive environment possible for them.  And this is why teachers and administrators must take certain steps before changing a student’s placement from a less restrictive to a more restrictive environment.

 

The 1997 and 2004 re-authorizations of IDEA require schools to at least attempt to resolve the problem, by working to change the disruptive behavior, before a student can be removed from the mainstream classroom.  Schools must conduct a Functional Behavioral Assessment (FBA) of the student, to get a better idea of the reasons for the unwanted behaviors, and then use that information to develop and implement a Behavior Intervention Plan (BIP), designed to minimize or eliminate those behaviors.[1]

 

In FBA, data is collected on when and where the target behavior occurs, what its “antecedents” were and what its “consequences” are.  Various instruments are used to track behaviors and what happened just before and after in a systematic way; interviews are also conducted with the teacher, the parents, other adults familiar with the student, and ideally (but, in the case of autistic students, not very often) the student himself or herself.  The person doing the assessment then analyzes all this data in order to determine what function the behavior serves for the student.  (Does it help to attract attention?  Provide sensory stimulation?  Allow the student to escape from difficult tasks?)[2]  Once the function or functions are identified, then the school team (teachers, aides, administrators, psychologists, etc.) can develop a Behavior Intervention Plan.  They can decide how the student’s environment and interactions with others might be modified in order to discourage the disruptive behavior and how the student can be encouraged to engage in more positive behavior.  For example:  if a student tends to scream every time the bells ring for class change or for a fire alarm, then the environment might be modified by covering up nearby alarm bells to dampen the sound.  The teacher could let the student know when regular alarms are about to sound, and the student could be encouraged to put on noise-cancelling headphones when those regular alarms are about to go off.  A student who runs away during transitions from one classroom to another can be given positive attention for learning each of the steps required for a safer transition (stop and wait by the classroom door, hold the teacher’s hand in the hall, etc.).[3]

 

The FBA/BIP combination is the best means we currently have for helping autistic students with “disruptive” behaviors remain in mainstream classes.  However, it is far from being a perfect solution.  One serious problem is that the law only vaguely defines the conditions under which a FBA/BIP is necessary.  The re-authorized IDEA requires them ONLY if the disruptive behavior is considered a “manifestation of the student’s disability”—whatever that means.  State laws and regulations are not much clearer.[4]  In practice, this vagueness allows students to be removed from mainstream classrooms and even removed from ordinary public schools without any attempt to modify their behavior, if that behavior is not obviously a “manifestation” of their disability.  Autistic students engage in many behaviors that can be, and all too often have been, incorrectly understood as “willful” or “manipulative,” rather than arising from their autism.  As a result, many have been moved to more restrictive environments without any effort at all being made to help them.

 

Another problem is lack of expertise.  Ideally, a skilled school psychologist or other experienced specialist would be in charge of the FBA/BIP process.  In practice—especially in impoverished rural or inner city school districts—the burden often falls on teachers, who may have had no training at all in behavior analysis and intervention. [5] However well meaning these teachers may be, they are basically operating on the fly, and their attempts to modify complex student behavior are often ineffective.  And if their efforts fail, the autistic student is generally moved out of the mainstream classroom.

 

A final issue is the very nature of FBA/BIP.  Like ABA, the FBA/BIP process has its roots in the behaviorist school of psychology.  The focus is on observable behaviors rather than on the mental processes that lead to those behaviors.  And in interpreting those behaviors, the emphasis is always on observable antecedents and consequences, which provide some clues to the target behavior’s function for the person engaging in it.  Skilled behavior analysts can often learn why a particular behavior is happening, and can then develop a plan for modifying it.  But the reasons for other behaviors elude them, because the people they are studying actually have complex mental processes, in which long-term memory and reasoning, as well as simple reactions to the environment play a role.

 

No matter how finely honed the instruments used for tracking behavior may be, they are not meant capture the internal experience of the autistic student.  Invisible stressors go unnoticed, especially if the student is never interviewed during the FBA process, but also when an interview has taken place, unless the student is unusually self-aware.  The behavior analyst may not understand the extent of the student’s sleep deprivation, or the impact of chronic stomach pain.  They may not realize that a student who has been systematically bullied for many years has come to see apparently innocuous remarks by teachers and other students as insulting and infuriating.  They may not recognize that a particular smell arouses memories of a traumatic experience many years earlier.

 

Behavior analysts also often miss the cumulative impact of multiple stressors, especially when the earlier stressors are not easily observable.  When a student keeps getting up and using the pencil sharpener in math class immediately after lunch, for example, the behavior team will usually, and quite reasonably, assume that the chaos in the school cafeteria is creating so much stress that the student cannot deal with the demands of math problems immediately afterwards and is trying to escape from them.  They may try to modify the student’s lunchtime experience, by letting him or her eat in another setting.  However, this won’t solve the problem if the demands of math class represent the breaking point in a day that has involved not only the chaos of the lunch room, but also (unobserved) teasing from a sibling during breakfast, (unobserved) bullying on the bus, (unobserved) failure to understand a reading in English class, and (unobserved) feelings of humiliation in gym class.  If the lunchtime experience has been improved, and yet the student keeps on going to the pencil sharpener during math, this may actually represent the student doing his or her best to avoid a complete meltdown, rather than a student trying to “escape task demands.”  Under the circumstances, there are more humane responses than declaring the BIP a failure and taking the student out a math class altogether.

 

I am not trying to suggest that the FBA/BIP process is useless—far from it.  The schools that make use of it are at least trying to keep autistic students in mainstream classrooms, at a time when many other schools are not.  And often Behavior Intervention Plans do actually work, and unwanted behaviors are diminished or eliminated.  But sometimes BIPs don’t work, so teachers, aides and administrators might want to think more broadly and more creatively about ways to help students remain in their classrooms even when “disruptive” behaviors (so long as they are not actually harmful to people or property) continue.

 

I will return to the issue of the more harmful behaviors in the next post.

 

 

 

[1] Cynthia Dieterich, Nicole Snyder and Christine Villani, “Functional Behavior Assessment and Behavior Intervention Plans:  Review of ther Law and Recent Cases,” Brigham Young University Education and Law Journal (2017), 195-217.

[2] On functional assessment of behavior in a clinical setting, see Pamela Neidert, Griffin Rookes, Makenzie Bayles, Jonathan Miller, “Functional Analysis of Problem Behavior,” in Derek Reed, Florence Di Gennaro Reed, and James Luiselli, eds., Handbook of Crisis Intervention and Developmental Disabilities (New York:  Springer, 2013), pp. 147-67.  On FBA as actually practiced in schools, see George Noell and Kristin Gansle, “Introduction to Functional Behavior Assessment,” in Angeleque Akin-Little, Steven Little, Melissa Bray and Thomas Kehle, eds., Behavioral Interventions in Schools:  Evidence-based Positive Strategies (Washington, DC:  American Psychological Association, 2009), pp. 43-58; Alison Bruhn, et al., “Assessing and Treating Stereotypical Behaviors in Classrooms Using a Functional Approach,” Behavioral Disorders 41 (2015), 21-37.

[3] Nancy Stockall and Lindsay Dennis, “Stop the Running:  Addressing Elopement in Young Children with Disabilities,” Young Exceptional Children 19 (2016), 3-13.

[4] Lauren Collins and Perry Zirkel, “Functional Behavior Assessments and Behavior Intervention Plans:  Legal Requirements and Professional Recommendations,” Journal of Positive Behavior Interventions 19 (2017), 180-90.

[5] Michael Couvillon, Lyndal Bullock and Robert Gable, “Tracking Behavior Assessment Methodology and Support Strategies:  A National Survey of How Schools Utilize Functional Behavioral Assessments and Behavior Intervention Plans,” Emotional and Behavioural Difficulties 14 (2009), 215-28; Lindsay Oram, Sarah Owens and Melissa Maras, “Functional Behavior Assessment and Behavior Intervention Plans in Rural Schools:  An Exploration of the Need, Barriers and Recommendations,” Preventing School Failure 60 (2016), 305-10.  Many schools have no trained psychologist available to conduct FBAs.  In 2014-15, there was only one school psychologist for every 1,381 students in the United States:  National Association of School Psychologists,  Shortages in School Psychology: Challenges to Meeting the Growing Needs of U.S. Students and Schools, Research Summaries (Bethesda, MD:  National Association of School Psychologists, 2017).

Disruptive Behaviors: The “Movement Behaviors”

 

“[School] was a nightmare full of loud sounds, bright colors, and noisy children.  The adoration I received for being ‘so smart’ faded with each grade.  I could not understand what was happening.  Instead of praise, I was constantly getting reprimanded.  Nothing made sense.  Even [the school principal] no longer meant what he said.  He said I could come and see him whenever I wanted, but he lied.  When I rose from my seat, walked out of my classroom, and went down the stairs to the main office to see him, I was in trouble.  ‘Young lady, you cannot just walk out of [the teacher’s] class and come down here.’  Tears welled up in my eyes as I tried to make sense of it.”[1]

 

Many autistic students move their bodies in ways other students do not (or at least not as regularly).  They may flap their hands, bounce up and down in their seats, twirl in the aisles, hide under their desks, get up and wander around the classroom, or try to leave the room or even the school.  (They may also behave in more disturbing ways.  Meltdowns, self-injury, and aggression towards others will be the subject of another post–for now, I want to focus on the actions just described:  flapping, bouncing, rocking, and various “out-of-seat behaviors” like hiding, wandering, and running away.)

 

Schools often view these “movement behaviors,” even more than vocalizations, as barriers to the inclusion of autistic students in mainstream classrooms.  Movement behaviors make many teachers uncomfortable because they break the visual pattern of an orderly classroom and appear to undermine discipline.  Some administrators and teachers also attribute disturbing motivations to students who behave in these ways.  They may view certain types of movement as evidence of defiance or disrespect, as acts of wilful disruption.  They fail to realize that autistic students who flap and rock and hide are not generally trying to be disruptive (with a few exceptions, to be described below).

 

In the first place, because autistic students often do not pick up on social cues from their fellow students, they may simply not understand why they can’t just move their bodies the way they want in school.  If they bounce or twirl at home, they assume that they can also bounce or twirl at school.  They may view demands that they stop as nonsensical, or–especially when their movements are related to sensory issues—they may simply be unable to stop.  As researchers and teachers are slowly coming to realize, movement is often a necessity for autistic children.[2]  Rocking may alleviate dizziness, making a student feel less likely to fall out of his or her seat.  Bouncing may help a child locate his or her body in space, diminishing the terrifying feeling of being “disembodied.”  If a fire alarm suddenly goes off, the only choice for some children will be to run away from an intolerably painful noise.  Many students with autism use movement to distract or protect themselves from sensory overload, or–on the other hand–to gain the sensory stimulation they need to remain focused on their schoolwork.

 

If some teachers are beginning to understand the connection between movement behaviors and sensory needs, far fewer understand how other factors are involved.  They may not realize that some autistic students move around because of their very eagerness to learn.  A child with auditory or visual differences may rove through the classroom trying to find a spot where he or she can access the information the teacher is presenting.  A child keenly interested in nature or in the trucks rolling down the street outside the school may run to the windows or even outside the school to pursue those interests.  Students bored with their own “toned-down” curriculum may wander around the classroom to catch a glimpse of what other students are doing.[3]

 

Emotional as well as intellectual issues may play a role.  Jeanne Davide-Rivera, the author of the passage cited above, left her classroom to visit the nice principal she had met her first day of school—the one who had actually told her she could visit him any time she wanted!  She found it intensely confusing when she was told that her behavior was wrong.  In her case, movement was a response to the desire for human connection—a desire autistic students are often assumed not to have.  Movement is even more often a response to anxiety associated with heavy academic or social unease.  In some children, anxiety leads to increased rocking, bouncing, or hiding.  Emotional distress caused by real or perceived academic “failures,” or by cruelty on the part of teachers and classmates often results in “elopement” or bolting out of a classroom or school.[4]

 

It remains the case, however, that most movement behaviors are either well-intentioned (that is, the student is actually trying very hard to be “good”) or unavoidable (he or she simply needs to move).  Only rarely is autistic “acting up” intended disrupt the class—and even then, this is not always for the reasons teachers or administrators imagine.  To give one unexpected example:  children overwhelmed by the visual and auditory stimuli in their classrooms may discover that they can hear and understand their lessons better from a desk in the hallway, which they then learn they can acquire for themselves through some planned infraction of the rules about movement.[5]  For these children, engaging in “undesirable” movement behaviors becomes the key to learning.

 

More commonly, however, deliberate misbehavior is a planned reaction to intolerable stress.  It is an undeniable fact that autistic students seldom enjoy school.  Much more often they experience school as “a nightmare” or as “hell.”[6]  Few administrators or teachers understand how painful school is for these students.  Day after day they must endure constant bombardment by sensory stimuli, the terror of (often unsuccessful) social interactions, and—most serious of all—the attentions of sadistic bullies.  (More on bullying in another post.)  After they have suffered for months or even years, some of these students consciously decide to behave in ways they know are wrong, in the hopes of being suspended and allowed to stay home.  The Wrong Planet website (an online forum for those with autism) has had several discussion threads about school suspension, and a common theme is seeking out suspension as a way to avoid bullies.[7]  What is most striking about these posts, however, is how often the authors used this approach only as a last, desperate resort.

 

So when teachers or school administrators are faced with autistic students who bounce, rock, twirl, and elope, they would do well to consider all the other possible reasons for these movement behaviors, before assuming that their students are simply being disrespectful.

 

 

 

 

 

 

[1] Jeanne Davide-Rivera,  Twirling Naked in the Streets and No One Noticed:  Growing Up with Undiagnosed Autism ([Location Unclear]:  David and Goliath Publishing, 2013), p. 34.

[2] Sadly, there remain so-called “experts” who assume that these children are deliberately misbehaving:  e.g., Deborah Napolitano and David McAdam, “Problem Behavior,” in Tristram Smith, ed., Making Inclusion Work for Students with Autism Spectrum Disorders:  An Evidence-Based Guide (New York:  Guilford Press, 2012), p. 304:  “Throughout the day, students continually have a choice [emphasis added] of whether to display the problem behavior . . .”

[3] Consider the case of Laura, described by Paula Kluth, You’re Going to Love This Kid:  Teaching Students with Autism in the Inclusive Classroom, 2nd ed. (Baltimore:  Paul H. Brookes Publishing, 2010), p. 202.

[4] See the post by WAautistic guy on a thread about “What Are Your Worst Experiences at School” on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=14&t=166310&start=30.

[5] Davide-Rivera, Twirling Naked in the Streets, p. 36.

[6] See the thread entitled “Public Education is HELL for Aspie Children:  http://wrongplanet.net/forums/viewtopic.php?p=1100890;  skimming through the “School” forum as a whole makes clear why school is so often found intolerable by those with autism.

[7] E.g., the following:“Anyone Ever Threatened with Suspension?” (http://wrongplanet.net/forums/viewtopic.php?f=14&t=148672) and “Is Suspension Really a Punishment?”(http://wrongplanet.net/forums/viewtopic.php?t=194004)