Tag Archives: Education

“Autistics Aren’t Welcome Here”: The Bullying of Autistic Students in America’s Schools

His final social media post said he was “tired of being bullied.”  According to his mother, he had been hounded at school for years—at one point coming home with a broken nose and a concussion.  The school administration knew that other students were preying on him but took no action.  At one point, he even visited the school nurse and told her he wanted to kill himself, but the school never followed up. 

And then, suddenly, a ray of hope.  The district STEM school admitted him to their program.  This meant, his mother said, that he would finally be able to “leave a school where he was tormented by students and neglected or ostracized by the administration.”  The STEM academy was aware that he was autistic but was willing to take him anyway.  But then it turned out that the STEM school didn’t offer a “base class that was required for the boy’s autism.”  And so the school district rescinded their permission for him to transfer, leaving the child “devastated.”  So he did kill himself.  He was eleven years old.[1]

Suicide attempts and successful suicides are far more common among autistic than more neurologically typical children.[2]  Bullies, especially cyberbullies, encourage suicide with messages like “you should die” and “dig a hole and bury yourself.”[3]  But autistic children don’t need such messages to realize that their lives in school are unbearable, or to 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.[4] 

The fact is, if you are a school bully looking for an easy target, the nearest kid with autism fits your needs perfectly. Generally naïve about social customs and interactions, such children are easily manipulated or tricked into dangerous situations.  Because of their unusual behaviors (and sometimes by personal preference), they tend to be socially isolated, lacking any protective support network of peers. They may also be mistrusted or even disliked by teachers and other authority figures, who will fail to back them up when they report being bullied.[5]   And even when parents report bullying to the schools, too often nothing is done.

What We Know About the Bullying of Autistic Children in Our Schools

So here’s the thing. I just started high school. And up until today, I have been really liking it. But today when I went into my binder, I found a note. It said, “Autistics aren’t welcome here go find a new school.”[6]

If students with autism are especially likely to be suicidal, it is mostly because they are so disproportionately affected by bullying. Some researchers have found that autistic children are four times more likely to be targeted by bullies than non-autistic ones. 40% of autistic kids are bullied every single day, compared with only 15% of neurotypical kids.  Children with autism are also more likely to be targeted than children with other special needs—with the possible exception of those with ADHD.[7]  In any given year, researchers estimate that between 57% and 94% of all autistic kids are bullied.[8] 

In general, bullied children receive little support from American schools.  “I feel like the public school system failed me,” writes one disillusioned adult.[9] This is true of all children, sadly, but autistic kids have special difficulties.  Most of these kids believe that their teachers and school administrators are indifferent to their suffering. It is possible, of course, that busy teachers genuinely don’t see the cruelty perpetrated in their classrooms.  However, victims often find it hard to imagine that their teachers can’t see what’s happening, since the situation is so painfully obvious to them (and since they often report it).  So they conclude that the teachers just don’t care: “They did absolutely nothing.  Ignoring it was their best policy.”[10]  This perceived (and to often real) indifference adds an additional layer of trauma to the experience.  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.[11] 

Even when bullying is formally reported to school authorities, it is remarkable how often the autistic victim’s testimony is not believed. Taylor Ibarra, an autistic fourteen-year-old in Aynor, South Carolina, killed himself in December 2017, after years of bullying. A classmate who had also been bullied at the same school stated, “It’s not fair how they treat the kids and how the administration does nothing about it. I never really fought back physically, but I went to the counselors the principals the teachers, nothing was done. This kid actually lost his life to it when it could have been prevented, and they did nothing.”[12]

Given two different accounts of what happened, schools may refuse to choose a side: “[The teachers’] favorite mantra was always ‘it’s their word against yours’.”[13]   Remarkably often, though, they take the bully’s account more seriously than their autistic victim’s.  Bullies almost always have a stronger support network than their autistic victims, so they easily find corroboration for their claims of innocence.  When it is supported by his or her friends, schools have no trouble accepted a bully’s version of events:  “. . . when I reported it to the teachers, “sorry we have to go with majority on this.”[14]  And after reporting fails, the situation commonly gets worse. Seeing that they can get away with it, bullies increase their attacks.  Indeed, teachers and administrators may actually punish the victim, while the bully gets off scot-free.[15]  In Arkansas, one autistic child who reported being bullied was called a “tattle-tale,” and forced to sit in the “time-out” chair.[16]  Eventually, victims simply stop looking to their schools for support: “I got tired of teachers never doing anything about the bullying so I quit telling my teachers about the bullying.[17] 

To make things worse, the adults in charge of schools may be bullies themselves.  Most school personnel don’t fall into this category, of course, but across the country many individual teachers, aides, coaches, and administrators have done horrible things to the autistic kids in their charge.  In Georgia, one teacher was forced to resign after the school determined she had repeatedly sprayed Lysol into her student’s face.[18]  In an Indiana school, at the end-of-the-year awards ceremony, a special education teacher gave her student a “Most Annoying” award.[19]  In Washington State, another special education teacher responded to a mother’s request for a “quiet space” for her son to work by placing his desk over a toilet in the staff bathroom.[20]  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.[21]  In California, a teacher forced her autistic student to clean her shoes in front of the class.[22]  How can students turn to their teachers for help, when the teachers themselves are so cruel?

The Long-Term Effects of School Bullying

The long horrors of their school days haunt many autistic adults. They remember (sometimes they can’t stop remembering . . .) being poked and prodded, scratched and kicked, punched, doused with noxious liquids, and pushed downstairs.  They remember being choked unconscious, set on fire, waterboarded (literally), 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 being alone on the bus, alone at lunch, alone on the playground. More than anything, they remember the mockery and humiliation, the insults and cruel imitations, the echoes of savage laughter. And maybe 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.[23]  Presumably Kabaki-Sisto meant well, but her piece was jarringly tone deaf to actual autistic experience.  

How could anyone suggest, wrote many autistic adults, that their horrific sufferings at school had a positive side?  And they are right.  Bullying induces such severe distress in schoolchildren that it may exacerbate or actually create psychological disorders— especially what psychologists call “internalizing” disorders (in which emotional distress is directed inwards.)  Loneliness, anxiety, poor self-image, depression, suicidal ideation and suicide attempts appear or intensify after bullying.  Prolonged bullying (the type most autistic kids endure) erodes trust in other people, leaving the victims feeling alone and helpless.  Responding to Kabaki-Sisto, “Jennifer” reports that her own experiences with bullying 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.[24]

Intense anxiety can follow.[25]  While Kabaki-Sisto suggested that bullying might make autistic children more aware of the people around them, one autistic adult described just what kind of awareness 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.[26]  

Kabaki-Sisto had suggested that bullying might lead to increased independence, 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.[27]

Such lack of trust increases 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.”[28]  But this only worsens the situation. Withdrawal destroys even the tiny bit of social support a child might have once enjoyed, making bullying easier than ever.

For bullied autistic students, school is a place of terror.  School refusal is a very common outcome:  many of these kids bolt when told it is time to go to school.[29]  Others may act up in school on purpose, eager to get suspended.

After I had been suspended the first time and got to stay home from school, I CONSTANTLY was trying to get in trouble in order to get suspended again. My parents never let me watch TV or anything like that on the day I was suspended, but it didn’t matter I was happy to be home, away from bullies.[31]

Even those who can force 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 her tormentors.  (We home-schooled her for her junior and senior year because we just couldn’t stand to watch her suffer any more.)  “IndieSoul” used to “shake and sweat from anxiety in school and hide in the bathrooms during recess.”[32]  Another victim reports fainting “just out of fear.”[33]  Autistic individuals already experience high anxiety, but years of bullying lay the foundation for chronic anxiety disorders: “I honestly don’t know if I’ll ever be completely rid of the anxiety.”[34] 

Particularly severe or long-lasting bullying may actually produce post-traumatic stress disorder (PTSD).[35]  To my knowledge, no researcher has examined the numbers of autistic adults suffering from PTSD due to school bullying, but many individuals report having PTSD for that reason.  Some describe their symptoms in online fora for autistics:  

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[d] by adults when I complained and after that, beaten up.[36] 

PTSD produces many other symptoms:

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.[37] 

Such debilitating symptoms make a decent quality of life nearly impossible.

The most dangerous lesson bullying teaches autistic (and other) children, though, 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 less than other people, inherently flawed, unworthy of decent treatment, and deserving of the “punishment” they are constantly receiving.

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.[38] 

I even had a school counselor tell me that it was my fault that people treated me the way I did because of the way I acted. I didn’t know what I was doing wrong, she didn’t tell me, and I didn’t know any other way to act.[39]

. . . 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.[40] 

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.[41]

Children who have absorbed these lessons often develop clinically significant depression. “I got bullied at school and was depressed all of middle school/high school.”[42]  “I got a major clinical depression because of bullying.  I’m on meds now.”[43]  Depression hinders both social and academic achievement, but it also frequently leads to thoughts of suicide—one study has found that such thoughts are 28 times more common among autistic than among neurotypical children.  Suicidal ideation is not something inherent in autism; it arises from being bullied. The same study found that bullying multiplies by three the likelihood that children with autism will think about or actually attempt suicide.[44] 

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.[45]

However happy, engaged, and enthusiastic they may have been at an early age, autistic children—like other bullied children—ultimately lose their early sense of self.  Izzy Tichenor was “a happy child. She was a happy little girl, she did well in school …”[46]  But early in November, 2021, ten-year-old Izzy killed herself.  News stories about her suicide have focused on the racist bullying she endured at school—because her death came soon after the U.S. Department of Justice had issued a scathing report about racism in Salt Lake City’s Davis School District, where she was a student.[47]  Racism was certainly a factor in her death. Izzy told her parents that her classmates had repeatedly called her n*****, and used other racial slurs.  They told her she was ugly so often that she asked her mother to remove a birthmark on her face with a razorblade.[48]  Izzy took a bottle of Febreze to school one day; asked why, she said it was because the other kids had told her she smelled bad.[49]  And other African-American students in the school district reported similar problems.  Their classmates had criticized their skin color and their smell, called them “apes” and “slaves,” and talked about lynchings.

But Izzy was not only African American; she was also autistic—an extremely dangerous combination in American society.[50]  Although most news reports have focused on the racism at her school, Izzy’s “autism and learning disability were also allegedly targeted” in the bullying, according to her family’s lawyer.[51]  And not only by students.  Izzy told her parents that her teacher didn’t like her: “She doesn’t say ‘hi’ to me. She says ‘hi’ to all the other kids.”[52]  When Izzy asked her teacher for help, she was told to sit down, that she [the teacher] didn’t want to deal with her.[53]  Sadly, American teachers often dislike their autistic students, and this teacher’s negative reactions to Izzy may have had as much to do with her autism as with her race. 

Most U.S. schools already have anti-bullying programs in place, but these programs don’t work very well.[54]  Bullying is a complex issue, with social, emotional, intellectual, and institutional components.  Much more research and many more trials will need to be done to find interventions that work.  But funding for such efforts must be found.  It is clearly long past time for American schools to face up to their bullying problem:  year after year our kids are killing themselves because of it.  More specifically, we need programs that help children with autism—those most vulnerable to both bullying and suicidality.  Unless our schools can find and implement programs that actually work, more children will die.  Like Izzy Tichenor.   Taylor Ibarra.  Kennedy LeRoy.[55] Too many.


[1] “Mother Sues Burleson ISD [Independent School District] After Son’s Suicide, Alleging School Took No Action in Bullying,” NBC Dallas-Fort Worth Channel 5 News, updated July 31, 2020:  https://www.google.com/search?client=firefox-b-1-d&q=burleson+texas+suicide.

[2] 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, January 19, 2011:  http://wrongplanet.net/forums/viewtopic.php?t=149165; redrobin62, in the “Is Suicide Common In People With Aspergers?” discussion on the same website, April 23, 2015: http://wrongplanet.net/forums/viewtopic.php?t=280538.

[3] Kayla Epstein, “A teen with autism attempted suicide after bullies told her to ‘die.’ Her family is suing the school,” The Washington Post ,May 30, 2019.  Compare the “Why Are People Telling Me to Kill Myself?” (2017) and “I Was Jus Bullied, Called a Retard & Told To Go Kill Myself” (2015) discussions on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=341134, and http://wrongplanet.net/forums/viewtopic.php?t=299688.

[4] PunkyKat, in the “People With Aspergers Don’t Care About Being Bullied” discussion on the Wrong Planet website, January 19, 2011: http://wrongplanet.net/forums/viewtopic.php?t=149165 .

[5] 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.

[6] Horsegirl, in the “Not Sure What I Should Do About This…” discussion on the AutismForums website, September 25, 2018:  https://www.autismforums.com/threads/not-sure-what-i-should-do-about-this.27179/#post-549051.

[7] 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.

[8] 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.

[9] Victim of bullying, IdahoRose, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website, December 24, 2010: http://wrongplanet.net/forums/viewtopic.php?t=146798.

[10] LeeAnderson, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website, December 24, 2010: http://wrongplanet.net/forums/viewtopic.php?t=146798.

[11] Cyberbullying Research Center, “Helping Kids with Autism Spectrum Disorder When Bullied or Cyberbullied,” September 14, 2016:  https://cyberbullying.org/helping-kids-autism-spectrum-disorder-bullied-cyberbullied.

[12] Amy Kawata, “Vigil held for 14- year old Taylor Ibarra in hopes to prevent teenage bullying and suicide,” WMBF News (Myrtle Beach), January 21, 2018: https://www.wmbfnews.com/story/37312824/vigil-held-for-14-year-old-taylor-ibarra-in-hopes-to-prevent-teenage-bullying-and-suicide/.

[13] Verdandi, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website, December 24, 2010:  http://wrongplanet.net/forums/viewtopic.php?t=146798.  See also Pandora_Box, in the same discussion, December 24, 2010.

[14] Pandora_Box, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website, December 24, 2010: http://wrongplanet.net/forums/viewtopic.php?t=146798.  See also CreativeInfluenza, in the same discussion, December 24, 2010.

[15] Some examples of the negative consequences of reporting:  Sparrow Rose Jones, No You Don’t: Essays from an Unstrange Mind (Self-published, 2013), p. 94; MightyMorphin, in the “If You Were Bullied At School . . . “ discussion on the Wrong Planet website, July 22, 2012:  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, May 27, 2013:  http://wrongplanet.net/forums/viewtopic.php?t=231793.

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

[17] ladyelaine, in the “Why School Sucked” discussion on the Wrong Planet website, December 29, 2017:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=357585&start=45.

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

[19] Liz Weber, “A special education teacher gave her autistic student a year-end award: ‘Most annoying’,” The Washington Post, June 4, 2019:  https://www.washingtonpost.com/education/2019/06/04/indiana-teacher-bailly-preparatory-academy-gives-autistic-student-most-annoying-award/.

[20] Emily Rueb, “A School Put an Autistic Boy’s Desk in a Bathroom, Setting Off a Debate on Stigmas,” The New York Times, September 24, 2019:  https://www.nytimes.com/2019/09/24/us/autistic-boy-bathroom-toilet-desk.html.

[21] 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.

[22] Kayla Dimick, “Lawsuit claims SPS [Southfield Public Schools] teacher humiliated student with autism,” The Southfield Sun March 8, 2017:  https://www.candgnews.com/news/lawsuit-claims-sps-teacher-humiliated-student-autism-99915.

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

[24] Jennifer, “A Response to the Ten Perks Children with Autism Get From Bullying,” on the Autistic Giraffe Party  (now simply known as Giraffe Party) Facebook page, October 14, 2015: https://www.facebook.com/autisticpartygiraffe/posts/429266380617441.

[25] 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.

[26] J.T. Dabaggian, “Why Karen Kabaki-Sisto’s 10 ‘Perks’ for bullied autistic kids is bull,” Medium magazine, October 16, 2015:   https://medium.com/@jtdabbagian/why-karen-kabaki-sisto-s-10-perks-for-bullied-autistic-kids-is-bull-7f14d97aabf4.

[27] “There Are No Perks to Being Bullied,” on the Purpleaspie blog, October 16, 2015:  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, October 15, 2015:  https://thedigitalhyperlexic.wordpress.com/2015/10/15/ten-things-this-autistic-kid-learned-from-being-bullied/.

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

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

[30]

[31] SchrodingersMeerkat, in the “Is Suspension Really a Punishment” discussion on the AutismForums website, November 29, 2017:  https://www.autismforums.com/threads/is-suspension-really-a-punishment.22893/#post-455520.

[32] IndieSoul, in the “Aspergers and Social Anxiety Disorder?” on the Wrong Planet website, July 3, 2012:  http://wrongplanet.net/forums/viewtopic.php?t=202798.

[33] Iknewyouweretrouble, in the “Were You Bullied in School?” discussion on the Wrong Planet website, June 27, 2013:  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, again on the Wrong Planet website:  “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).

[34] IndieSoul, in the “Aspergers and Social Anxiety Disorder?” on the Wrong Planet website, July 3, 2012:   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, May 24, 2013:  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, January 19, 2011: http://wrongplanet.net/forums/viewtopic.php?t=149165; xxautisticfoolxx’s contribution to the “Unable to deal with the cruelty of life” discussion on the Wrong Planet website, March 1, 2018:  https://wrongplanet.net/forums/viewtopic.php?t=360970.

[35] 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.

[36] Ameriblush, in the “Remembering years of bullying” discussion on the AutismForums website, December 3, 2017:  https://www.autismforums.com/threads/remembering-years-of-bullying.22944/#post-456806.

[37] Jellybean, in the “Complex PTSD As Result of Severe Bullying” discussion on the Wrong Planet website, July 24, 2009:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=47533&start=45.

[38] This_Amoeba, in the “People Normalizing Bullying You Got As A Child” discussion on the Wrong Planet website, February 4, 2017: https://wrongplanet.net/forums/viewtopic.php?t=336587.

[39] Hanyo, in the “If You Were Bullied at School, Did It . . .” discussion on the Wrong Planet website, July 1, 2013:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=234399.

[40] Daedal, in the “People with Aspergers Don’t Care About Being Bullied” discussion on the Wrong Planet website, January 19, 2011:  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, October 16, 2015:  https://medium.com/@jtdabbagian/why-karen-kabaki-sisto-s-10-perks-for-bullied-autistic-kids-is-bull-7f14d97aabf4.

[41] Kirsten, “Bullying . . . The Real Problem . . . An Aspergian Woman’s Perspective,” on the Wrong Planet website, 2017:  http://wrongplanet.net/bullying-the-real-problem-an-aspergian-womans-perspective/.

[42] IHaveAspergers,” in the “Is Suicide Common In People with Aspergers?” discussion on the Wrong Planet website, April 20, 2015:  http://wrongplanet.net/forums/viewtopic.php?t=280538.

[43] hello07, in the “People with Apergers Don’t Care About Being Bullied” discussion on the Wrong Planet website, January 18, 2011:  http://wrongplanet.net/forums/viewtopic.php?t=149165.

[44] 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.  A more recent study suggests that bullying multiplies the risk by two:  Rachel Holden, et al., “Investigating Bullying as a Predictor of Suicidality in a Clinical Sample of Adolescents with Autism Spectrum Disorder,” Autism Research 13 (2020), 988-997.

[45] Kateryna Fury, “Why Bullying Isn’t Healthy for ANYONE,” on her Textual Fury blog, October 15, 2015: 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/.  T

[46] The Tichernor family’s lawyer, quoted in Elizabeth Joseph, “10-year-old Utah autistic student dies by suicide weeks after scathing DOJ report on school district,” CNN News, November 13, 2020:  https://www.cnn.com/2021/11/12/us/isabella-izzy-tichenor-utah-bullying-claims-suicide/index.html.

[47] Elizabeth Joseph, “10-year-old Utah autistic student dies by suicide weeks after scathing DOJ report on school district,” CNN News, November 13, 2020:  https://www.cnn.com/2021/11/12/us/isabella-izzy-tichenor-utah-bullying-claims-suicide/index.html;  “Justice Department Reaches Settlement to Remedy Severe Racial Harassment of Black and Asian-American Students in Utah School District,” U.S. Department of Justice, Justice News, October 21, 2021:  https://www.justice.gov/opa/pr/justice-department-reaches-settlement-remedy-severe-racial-harassment-black-and-asian.

[48] Austin Facer, “‘It strikes a lot of chords’: Izzy Tichenor’s family’s lawyer speaks on her case, plans to take it to federal court,” on ABC4, Salt Lake City, Utah, December 9, 2021: https://www.abc4.com/news/digital-exclusives/it-strikes-a-lot-of-chords-izzy-tichenors-familys-lawyer-speaks-on-her-case-plans-to-take-it-to-federal-court/.

[49] Elizabeth Joseph, “10-year-old Utah Black and autistic student dies by suicide weeks after scathing DOJ report on school district,” CNN News, November 13, 2020:  https://www.cnn.com/2021/11/12/us/isabella-izzy-tichenor-utah-bullying-claims-suicide/index.html.

[50] Leonard Pitts, “When Should We Teach Kids About Race? Must Be Nice to Have a Choice,”
 The Miami Herald, November 12, 2021 (behind paywall);  reprinted on Newsbreakhttps://www.newsbreak.com/news/2432400515601/when-should-we-teach-kids-about-race-must-be-nice-to-have-a-choice-opinion.

[51] Austin Facer, “‘It strikes a lot of chords’: Izzy Tichenor’s family’s lawyer speaks on her case, plans to take it to federal court,” ABC4 News, Salt Lake City, December 9, 2021:  https://www.abc4.com/news/digital-exclusives/it-strikes-a-lot-of-chords-izzy-tichenors-familys-lawyer-speaks-on-her-case-plans-to-take-it-to-federal-court/.

[52] Lauren Sue, “’I Let Them Work It Out”:  Vile Teacher Allegedly Tells Mom When Black Student Told Her [the teacher] Skin Stinks,” The Daily Kos, November 11, 2021:  https://www.dailykos.com/stories/2021/11/11/2063667/-DOJ-declares-Utah-district-a-safe-haven-for-racists-weeks-before-Black-10-year-old-commits-suicide; Elizabeth Joseph, “10-year-old Utah autistic student dies by suicide weeks after scathing DOJ report on school district,” CNN News, November 13, 2020:  https://www.cnn.com/2021/11/12/us/isabella-izzy-tichenor-utah-bullying-claims-suicide/index.html.

[53] Keith Reed, “Black Fifth Grader’s Suicide Blamed on Bullying,” The Root, November 10, 2021:  https://www.theroot.com/black-fifth-grader-s-suicide-blamed-on-bullying-1848034647.  This part of the article is a quotation from an article in the Salt Lake City Tribune, which I have not been able to reach because of their paywall.

[54] “Overall, the existing educational interventions had very small to small effect sizes on traditional bullying and cyberbullying perpetration”:  Esperanza Ng, et al., “The Effectiveness of Educational Interventions on Traditional Bullying and Cyberbullying Among Adolescents: A Systematic Review and Meta-Analysis,” Trauma, Violence & Abuse 23:1 (2022), 132-51.  See also H. Gaffney, et al., “What works in anti-bullying programs? Analysis of effective intervention components,” Journal of School Psychology, 85 (2021), 37– 56.

[55] Los Angeles one.

Revised: Educating Autistic Children, 1950-1975

As I mentioned a few weeks back, I’m pulling material out of my overly long book in order to make it shorter. And then I’m posting that material here. This is an extended version of a post I made in February 2017, but with extra material I added for the book. Hope you find it interesting.

The vast majority of adults recognized as autistic today did not have that label when they were children.  Certainly, most adults with what we today call “level 1 autism”[1] would never have been considered autistic in childhood, first because they did not meet the very strict diagnostic criteria laid out by Leo Kanner in the 1940s, and also because so few people had even heard of autism. They might only have been considered “weird” or “eccentric.”  An exception was Temple Grandin, famous today for her work in animal science and her advocacy on behalf of people with autism.  As a child, she was diagnosed as “brain-damaged”—only much later was she recognized as autistic.[2] 

On the other hand, most adults today described as “level 3” autistics[3] were incorrectly diagnosed in their childhoods.  They were almost always labelled “psychotic” or “intellectually disabled” or both.[4]  Before the 1990s, only a tiny number of children who happened to come to the attention of the small number of researchers interested in the subject, and who met Kanner’s strict criteria, were ever actually labelled “autistic.”  As a result, we will need to distinguish between the ways in which these three groups were educated in the past—those who were “eccentric” but “normal,” those who were considered intellectually disabled/mentally ill, and the tiny number actually diagnosed as “autistic.” 

Before 1975, when the Education for All Handicapped Children Act was passed, most “eccentrics” attended the same schools as their siblings.  They usually did so without any support services unless they had additional disabilities, or some thoughtful teacher came to their assistance.  A few of them flourished.  Others report a painful struggle at school, being punished for behaviors that were beyond their control and wrestling with learning problems that neither they nor their teachers understood.  Dawn Prince-Hughes (who later earned a Ph.D. in Anthropology) recalls the horrible year in third grade when she both developed severe asthma and encountered a particularly nasty teacher.  This teacher punished her for her unexplained failings in math by refusing to let her engage in the reading and writing assignments at which she excelled.  She also announced Prince’s failing math grades, plus the fact that she was being tested for “mental retardation,” to the entire third-grade class.[5] 

These undiagnosed children almost always endured horrendous bullying from both teachers and classmates.[6]   Insults, real and threatened beatings, tripping, pushing, being shut in lockers, suffering “swirlies” in the toilet and other forms of humiliation were commonplace.[7]  For some, this was simply the way things were: 

It never occurred to me at that time to talk to my parents about the problem of bullying in school and the teachers never told them either.  I accepted it as a fact of life.[8] 

Others were driven to retaliate.  After years in elite private schools for girls, Temple Grandin finally got tired of being called names.  When one of her seventh-grade classmates called out, “Retard!  You’re nothing but a retard!”, Grandin threw a book at her, hitting her in the face.  She was expelled from the school as a result.[9]  A few of these kids became bullies themselves. [10]  Still others, like John Elder Robison, finding it too difficult to cope with the stresses of school, either dropped or failed out.[11] 

But what about the other two groups, the tiny few with an actual autism diagnosis, and the much larger number considered “mentally retarded” or “psychotic”?  Before 1975, these children seldom received much schooling at all.  Most public school systems refused to allow them in their classrooms.[12]   A few parents managed to get a diagnosed child into a school, but the experiment seldom lasted more than a few months before the child was either withdrawn or expelled.[13]  No services existed to help such a child survive, let alone thrive, in the public school environment.  A few well-informed or well-connected families managed place their children in one of a handful of establishments designed specifically for the “severely damaged” or “profoundly disabled.”[14]  These establishments tended to focus on teaching functional living skills (toileting, dressing, speaking).  But sometimes they offered the basics of reading, writing and arithmetic to children who were considered able to manage those subjects.[15]  Judgments about ability were seldom correct, however.  Charles Martel Hale, Jr., for example, who was non-speaking and labelled “severely to profoundly mentally retarded,” attended a supposedly high-quality program in Queens, New York in the early to mid-1970s.  He learned living skills, but not academics.  But when he finally learned to communicate on the typewriter and computer in the 1990s, he explained that he had taught himself to add, subtract and multiply by listening to conversations and television programs.[16]

Most “autistic,” “psychotic” or “mentally retarded” children were (on the advice of doctors and other professionals) swiftly shunted into psychiatric institutions or homes for the “feeble-minded,” and left to fend for themselves.[17]  Tom McKean, who had attended his neighborhood school from kindergarten through third grade, before being transferred to classes for the Learning Disabled, was finally diagnosed as autistic in seventh grade and promptly removed to a psychiatric institution.[18]  Some of the institutions in which these children were confined called themselves “schools,” but few offered much in the way of an education.  They might provide various forms of vocational training, so that residents could help “earn their keep.”  Most, though, were simply warehouses.  There, autistic residents lived in ignorance and squalor, exposed to hunger, cold, and disease, and subject to abuse by older children and adult residents and staff.  Jerry Alter entered the first of a series of psychiatric institutions at the tender age of five.  When they visited, his parents found him with bruises and black eyes, and so heavily medicated that he spent most of his time sleeping; later his sister expressed gratitude that he “only” acquired tuberculosis, and not—like so many other residents—a venereal disease at the state hospital where he was living.[19]  This was the kind of brutal environment in which most obviously autistic children found themselves before 1975.

  • – – – – – – – – – – –

[1] Still commonly called “high functioning” autism, even though functioning labels have little real meaning, as we shall see below.

[2] Temple Grandin and Richard Panek, “The Autistic Brain:  The origins of the diagnosis of autism—and the parental guilt-tripping that went along with it,” Slate Magazine (May, 2013): http://www.slate.com/articles/health_and_science/medical_examiner/2013/05/temple_grandin_s_the_autistic_brain_an_excerpt_on_the_history_of_the_autism.htm NOTE: I have no idea why this note came out with different formatting, but I don’t seem to be able to change it. Oh well . . .

[3] Commonly called “low functioning,” although, again, these labels are largely meaningless. 

[4] Autism, as defined by Kanner, was considered a form of childhood schizophrenia until the 1970s.

[5] Dawn Prince-Hughes, Songs of the Gorilla Nation:  My Journey through Autism (New York:  Random House, 2004), pp. 41-44.   Given the popular association of autism with special math skills, it is worth noting how many autistic adults, undiagnosed as children, remember struggling with the subject in their childhood.  Liane Holliday Willey reports that she “hated and was terrible in math”:  Pretending to Be Normal:  Living with Aspergers Syndrome (London:  Jessica Kingsley Publishers, 1999; expanded ed., 2014), p. 47.  Stephen Shore’s first grade teacher told his parents that he would never be able to do math.  In college, however, he successfully completed calculus and statistics, and earned a degree in accounting, before going on to earn a Ph.D. in Special Education: Beyond the Wall:  Personal Experiences with Autism and Asperger Syndrome (Shawnee Mission, KS:  Autism Asperger Publishing Co., 2002;  2nd ed. 2003), p. 53

[6] Sparrow Rose Jones, “Autistic Pride Day 2015—Letter to Myself as a Child,” on the Unstrange Mind blog:  https://unstrangemind.wordpress.com/2015/06/18/autistic-pride-day-2015-letter-to-myself-as-a-child/ .

[7] There will be more on this topic below.

[8] Stephen Shore, Beyond the Wall:  Personal Experiences with Autism and Asperger Syndrome (Shawnee Mission, KS:  Autism Asperger Publishing Co., 2002;  2nd ed. 2003), p. 56.

[9] Temple Grandin, with Margaret Scariano, Emergence:  Labeled Autistic  (Novato, CA:  Arena Press, 1986; reissued with additional material:  New York:  Grand Central Press, 2005), pg. 68.

[10] Cynthia Kim, Nerdy, Shy and Socially Inappropriate:  A User Guide to an Asperger Life (London and Philadelphia:  Jessica Kingsley, 2015), pp. 12-17.

[11] John Elder Robison, Look Me in the Eye:  My Life with Aspergers (New York:  Broadway Books, 2007), pp. 85-94.

[12] On the exclusion from school of children with an autism diagnosis before 1975, see Anne Donnellan, “An Educational Perspective on Autism: Implications for Curriculum Development and Personnel Development,” in Barbara Wilson and Anneke Thompson, eds., Critical Issues in Educating Autistic Children and Youth (Washington, DC:  United States Department of Education, 1980), p. 53. 

[13] For an example of a diagnosed child who spent a short while in the public schools, see Jules Bemporad, “Adults Recollections of a Formerly Autistic Child,” Journal of Autism and Developmental Disorders 9 (1979), p. 184.  Incidentally, the word “formerly” in the article title does not refer to any form of “recovery” from autism.  Instead, the child whose life is recounted has turned into an adult and Bemporad seems unwilling to describe an adult as “autistic.”

[14] E.g., Rud Turnbull, The Exceptional Life of Jay Turnbull:  Disability and Dignity in America, 1967-2009 (Amherst, MA:  White Poppy Press, 2011), Chapter 2.

[15] The individual interviewed by Jules Bemporad (note 11 above), learned to multiply in such a school—this skill later provided him with great satisfaction. But his school was exceptional.

[16] Charles Martel Hale, Jr., “I Had No Means to Shout” (Bloomington, IN:  1stBooks Library, 1999).

[17] Wendlyn Alter, “You’ve Come a Long Way Baby:  An Interview with Jerry Alter,” Chalice (April-May, 2014), pp. 11-15, describes how her brother Jerry was hospitalized at the age of 5.

[18] Thomas McKean, Soon Will Come the Light:  A View from Inside the Autism Puzzle (Arlington, TX:  Future Horizons, 1994; 2nd ed. 2001), pp. 3-5.

[19] Wendlyn Alter, “You’ve Come a Long Way Baby:  An Interview with Jerry Alter,” Chalice (April-May, 2014), pp. 11-15.

“You Ever Been Charged with a Crime Before?”

According to a recently filed law suit, “L.G.” was handcuffed by a police officer, slammed to the floor, and pinned there for more thanhalf an hour, as he cried and yelled that he was in pain. The officer in question asked him “You ever been charged with a crime before? Well, you’re fixing to be.”

The crime in question? Spitting. Nothing more. Just spitting. In the end there was no arrest, but L.G. was severely traumatized. This event took place in September, 2018, in Statesville, North Carolina.

Oh, and did I mention that L.G. was an autistic 7-year-old? And that he was targeted in his special needs classroom, as two teachers looked on without intervening to help their student?

Hooo Boy!

I volunteer as an advocate for parents who need help at IEP meetings. Just sat through a doozy.

First, the district had to exclude the special ed teacher and program director from the meeting because they had been actively harassing the mother.

Then, there was the fact that the mother had never been sent a copy of her son’s latest evaluation, on which this meeting was supposed to be based.

But the final straw was that the school district wanted to place her kid in a separate special ed class, based solely on the fact that he had an IEP. He wasn’t having or making trouble in the regular classroom, and he was learning stuff there. But he had an IEP so he had to go. For those who aren’t familiar with this stuff: that is NOT an adequate reason for moving him. The mom is now getting a lawyer.

Sometimes I just can’t believe the stuff that goes on in our schools.

Suspension and Expulsion: The Data

The reality of school discipline is more complicated than the law would suggest.  To begin with, students with disabilities, as a group, are much more likely to be suspended from school than students without disabilities.  A 2018 report, “School Climate and Safety Report” published by the Department of Education’s Office for Civil Rights found that even though only 12% of all students in the U.S. have disabilities, 26% of those subject to out-of-school suspension and 24% of those expelled have disabilities.  In other words, students with disabilities are being suspended and expelled at roughly twice the rate of other students.[1]  Students of color, especially African Americans, face even higher rates of disciplinary removal from school.  Among students with identified disabilities, roughly 9% of whites and Hispanics were suspended in any given year, while 21% of Native Americans and 23% of black students were suspended.[2]

If we look specifically at autistic students, we should remember, first of all, that there are still many autistic students who have not been formally diagnosed. Unless they happen to have another, recognized, disability, they are not protected under IDEA and may be suspended or expelled because of behavior that would be considered a “manifestation” of autism in a diagnosed student.  Since girls and minority students are much less likely than white male students to be diagnosed with autism, they are also more likely to lack IDEA protections against excessive suspensions and expulsions.[3]

Relatively little research has focused on children with an actual autism diagnosis, but a 2018 report from the Center for American Progress states that pre-school children diagnosed with autism are ten times more likely to be suspended or expelled than their “typically developing” peers.[4]  A 2017 research study analyzes data for older children in the state of Maryland, from 2004 to 2015.  The authors found that about 3.3% of both white and African American students with autism were suspended during this period.  White autistic students were much more likely that non-disabled white students to be suspended, while autistic African American students were less likely to be suspended than non-disabled African American students.[5]

The fact that both groups of autistic students this study were suspended at the same rate suggests that both groups were treated equally.  But bear in mind that African Americans are much less likely than whites to be diagnosed with autism and may instead be diagnosed with intellectual or emotional disabilities.  In the same study, 10.5% of African American students with intellectual disability had been suspended at least once, compared to only 7.3% of white students with ID.  If we assume that at least some of those diagnosed with ID also have autism, or have been misdiagnosed with ID instead of autism, then it looks like the rate of suspension for African American students with autism probably is higher than it is for whites.[6]  The authors provided no data comparing students with autism and students with “emotional disturbance,” but African-American children with autism are very frequently misdiagnosed with ED, and students with ED are the most likely of all disability groups to be suspended or expelled.  It seems plausible, then, to assume that African Americans and members of other minority groups with autism are at higher risk of being removed from school than white students with autism.

There is also the question of how often autistic students are suspended.  Sometimes schools suspend children “unofficially,” by saying they are having a “bad day” and would be better off at home.  They call the parents to pick the child up, but do not register this event as a suspension.[7]  This allows the school to get around federal regulations that limit the number of suspensions that can be imposed on students with disabilities.  As a result, suspensions from school can occur with stunning frequency.  A report on television news in Washington state looked at statewide rates of suspension and expulsion for students with disabilities, with results similar to those described above.  The main focus of the report, a young autistic man named Austin, was suspended for more than 100 days during his time in middle school (far, far beyond the 10 days a year allowed under IDEA and federal regulations).  Another young autistic man in Washington state was officially suspended for 24 days, and unofficially for 45 days, for a total of 69 days out of the classroom during a single school year.[8]  While these are extreme cases, it is not at all unusual for schools to use unofficial removals to evade the limits set on suspensions by law.

Repeated removals from school obviously limit children’s educational opportunities, leading them to fall farther and farther behind other students academically.  But beyond that, repeated suspensions and expulsion from school have devastating emotional effects on children.  As Austin, the young man mentioned in the last paragraph, put it: “I felt like I was one of the worst kids that ever was because they were just constantly sending me home.” [9]  Disciplinary removal may alienate children from schools which they see as simply not wanting them.  And so, children repeatedly suspended and expelled are much more likely to drop out of school altogether.[10]  “As a teen, I was expelled from the entire county school system and my parents had to find a private school willing to take me.  At sixteen, I dropped out of school altogether,” recalls one autistic adult.[11]

Finally, repeated suspensions and expulsion promote entry into the “school-to-prison pipeline,” especially, but certainly not exclusively, for young African American males.[12] School “resource officers” (i.e., armed police officers) often intervene in disturbances at school, all too often in inappropriate ways.  They may end up handcuffing and even bringing to jail autistic students seen as “disruptive”—setting up a vicious cycle in which these students see authorities as the enemy and act out accordingly.  In addition, many suspended and expelled students spend their days unsupervised at home or on the streets, where they may engage in a variety of criminal activities, eventually leading to arrest and imprisonment.

As research has repeatedly shown, disciplinary removal from school has no positive impact at all on student behavior.  On the contrary, it is more likely to worsen that behavior.[13]  As a result, the official policy of many school districts is that suspension and expulsion should only be used when necessary to protect other students and staff, or when guns or drugs are involved.  In practice, however, these disciplinary techniques are often used to “punish” students who skip classes, fail to complete their homework, or talk back to their teachers.  As we’ll see in the next post, autistic students who receive these punishments often view them as senseless, and even malicious (a way for “mean teachers” to get back at them).

 

 

 

 

 

 

 

 

 

 

[1] Office of Civil Rights, Department of Education, “School Climate and Safety,” 2018 report based on the 2015-16 Civil Rights Data Collection:  https://www2.ed.gov/about/offices/list/ocr/docs/school-climate-and-safety.pdf.   The disparity begins in preschool:  Cristina Novoa and Rasheed Malik, “Suspensions Are Not Support:  The Disciplining of Preschoolers With Disabilities” (Report from the Center for American Progress, January17, 2018:  https://www.americanprogress.org/issues/early-childhood/reports/2018/01/17/445041/suspensions-not-support/.  See also [No author], “Washington special needs students disciplined more than twice as often as general education peers,” report on King5 television news:  https://www.king5.com/article/news/local/washington-special-needs-students-disciplined-more-than-twice-as-often-as-general-education-peers/281-608161669.

[2] Nicholas Gage, et al., “National Analysis of the Disciplinary Exclusion of Black Students with and without Disabilities,” Journal of Child and Family Studies 28:7 (2019), 1754-64.

[3] Office of Special Education and Rehabilitative Services, “Racial and Ethnic Disparities in Special Education:  A Multi-Year Disproportionality Analysis by State, Analysis Category, and Race/Ethnicity” (2016), pp. 23-24:  https://www2.ed.gov/programs/osepidea/618-data/LEA-racial-ethnic-disparities-tables/index.html.

[4] Cristina Novoa and Rasheed Malik, “Suspensions Are Not Support:  The Disciplining of Preschoolers With Disabilities” (Report from the Center for American Progress, January17, 2018:  https://www.americanprogress.org/issues/early-childhood/reports/2018/01/17/445041/suspensions-not-support/.

[5] M. Krezmien, et al., “Suspension Rates of Students with Autism or Intellectual Disabilities in Maryland from 2004 to 2015,” Journal of Intellectual Disability 61:11 (November, 2017), 1011-1020

[6] M. Krezmien, et al., “Suspension Rates of Students with Autism or Intellectual Disabilities in Maryland from 2004 to 2015,” Journal of Intellectual Disability 61:11 (November, 2017), 1011-1020.

[7] Robert Tudisco, “Can the School Give my Child With an IEP ‘Unofficial” Suspensions?’”, on the Understood.org website:  https://www.understood.org/en/school-learning/your-childs-rights/basics-about-childs-rights/can-the-school-give-my-child-with-an-iep-unofficial-suspensions; see also Cristina Novoa and Rasheed Malik, “Suspensions Are Not Support:  The Disciplining of Preschoolers With Disabilities” (Report from the Center for American Progress, January17, 2018:  https://www.americanprogress.org/issues/early-childhood/reports/2018/01/17/445041/suspensions-not-support/.

[8] Report from the Washington State ACLU, “Pushed out; kicked out: Stories from families with special education students in Washington”:  https://www.aclu-wa.org/pages/pushed-out-kicked-out-stories-families-special-education-students-washington.

[9] [No author], “Washington special needs students disciplined more than twice as often as general education peers,” report on King5 television news:  https://www.king5.com/article/news/local/washington-special-needs-students-disciplined-more-than-twice-as-often-as-general-education-peers/281-608161669.

[10] Amity Noltemeyer, Rose Marie Ward, and Caven Mcloughlin, “Relationship Between School Suspension and Student Outcomes: A Meta-Analysis,” School Psychology Review 44 (2015), 224-40; Susan Faircloth, “Factors Impacting the Graduation and Dropout Rates of American Indian Males with Disabilities,” in Susan Faircloth, Ivory Toldson, and Robert Lucio, eds., Decreasing Dropout Rates for Minority Male Youth with Disabilities from Culturally and Ethnically Diverse Backgrounds (Clemson, SC:  National Dropout Prevention Center for Students with Disabilities, 2014), pp. 8-9.

[11] Max [formerly known as Sparrow Rose] Jones, No You Don’t:  Essays from an Unstrange Mind (Self-published, 2013), p. 51

[12] Abigail Novak, “The association between experiences of exclusionary discipline and justice system contact: A systematic review,” Aggression and Violent Behavior 40 (2018), 73-82; Amity L. Noltemeyer, Rose Marie Ward, and Caven Mcloughlin, “Relationship Between School  Suspension and Student Outcomes:  A Meta-Analysis,”  School Psychology Review  44: 2,  (June,  2015):  224-24; A.E. Cuellar and S. Markowitz, “School Suspension and the School-to-Prison Pipeline,” International Review of Law and Economics 43 (2015), 98-106.

[13] Ambra Green, Deanna Maynard, and Sondra Stegenga, “Common misconceptions of suspension: Ideas and alternatives for school leaders,” Psychology in the Schools 55:4 (April, 2018), 419-28.

Removal from School for Disciplinary Reasons: The Law

My apologies for all the legal stuff that follows.  Understanding how suspension and expulsion can legally be imposed on autistic children requires understanding the complicated provisions concerning student discipline laid out in the Individuals with Disabilities Education Act (IDEA), as amended in 1997 and 2004.

In the United States, under the current, amended form of IDEA, not only are children with autism and other disabilities entitled to FAPE (a free, appropriate, public education, in the least restrictive environment possible), but school actions that might deny them FAPE by removing them from the classroom are subject to legal limitations.[1]  The school must be very careful about removing a child temporarily (suspension) or permanently (expulsion), if the child’s behavior is a “manifestation” of her or his disability—that is, the behavior is caused either by the disability itself, or by the school’s failure to carry out the child’s IEP plan.  For example, if a child gets into trouble for not doing what the teacher says, and if it turns out that the child has an auditory processing disorder which makes it difficult or impossible to hear what the teacher is saying, and if the accommodations for auditory processing disorder written into her or his IEP have not been fully implemented, then the school cannot suspend or expel the child.

The school also cannot use removals from the classroom in ways that turns them into an unofficial “change of placement” to a more restrictive environment.[2]  If the school does want a change of placement, it is supposed to follow a formal review process, showing that the school has done all that it can to offer the student accommodations and teach him or her “better” behaviors, without success.  But because these actions present a major obstacle to their child receiving FAPE, parents who know their child’s rights can and do appeal school decisions through the state education system and possibly in court.

Schools use both in-school suspensions, in which a child is removed from the classroom but remains in the building, and out-of-school suspensions, in which a child is normally sent home, to punish unwanted behaviors.  According to federal regulations, a disabled child cannot be suspended in either setting for more than ten consecutive school days in response to a particular incident.  If the school wants to suspend a child for a longer period of time, it must provide appropriate educational and additional IEP services, at the school or at home, so that the child can continue to receive an education.  The school must also hold a “manifestation determination review” to decide whether the child’s unwanted behavior or behaviors is a “manifestation” of their disability. If they conclude that it is, additional efforts must be made to modify the child’s behavior.  The school is required to review his or her Individualized Education Program (IEP) to ensure that it is being fully implemented, possibly conduct a first or a new Functional Behavior Analysis (FBA) to determine why the child is “misbehaving” in the first place, and then find ways to teach the student “better” behaviors, while keeping her or him in the classroom.[3] 

Even for students whose behavior is determined to be a “manifestation” of their disability, there are exceptions to the “ten day” rule.  Under certain circumstances—involving guns, drugs, or serious violence against another person—a student may be removed from the school for up to 45 days, as long as educational services continue to be provided in an “interim alternative educational setting.”[4]  The law does not specify what this term refers to—it simply says that the child should continue to receive educational services while in this setting.  Under some circumstances and in some places, children may be sent to special programs run by the school district, but located away from the school itself.  Under other circumstances, children may be sent to juvenile detention centers, residential treatment centers, or even psychiatric hospitals.  There are educational opportunities at these places, but they are—to say the least—extremely limited.

Even without guns or drugs or violence being involved, schools can legally suspend autistic students more than once a year, so long as educational services continue to be provided.  But if a school repeatedly suspends a child, as punishment for the same or similar behaviors, then it is moving into dangerous legal territory.  Repeated suspensions (even if each one is no more than ten days in length), create a “pattern” of administrative behavior that begins to look like an unstated change of placement (a denial of FAPE).  Federal regulations warn schools not to suspend a student with disabilities for the same or similar behaviors for more than 10 days over the course of a single school year, because this begins to look like a change of placement. [5]  If there are more than ten days of suspension during the year, the school district determines whether the suspensions constitute a change of placement, on a case-by-case basis– but parents have the right to appeal to the courts on the grounds that their child is not receiving FAPE.

If a school decides it wants to expel an autistic child, the IEP team must hold a manifestation determination review within 10 days after the decision is made.  If the child’s behavior is found to be a manifestation of autism, then the child cannot be expelled.  If the behavior is not found to be a manifestation of disability, parents have the right to call for a due process hearing, in which the IEP team’s decision will be reviewed by a hearing officer.  Depending on the state, there may be a one- or a two-tiered system—in the former, the case is heard by a state hearing officer, in the latter, the case is heard first by an officer from the school district, and then (if the parents decide to appeal) by a hearing officer from the state.  If the parents are still not satisfied, they can bring a civil law case against the school district.

This is the law as laid out in the amended text of IDEA and in federal regulations.  Disabled students’ rights to a free, appropriate, public education must be protected.  Unfortunately, though, far too many school districts do actually find ways of removing “troublesome” students without considering whether the “troublesome” behaviors are manifestations of the students’ disabilities, and without following the procedures required by law.  I will discuss some of these practices in my next post.


[1]  IDEA, part B, subpart E, sections 300.530-300.536: https://sites.ed.gov/idea/regs/b/e.

[2]  IDEA, part B, subpart E, section 300.536

[3] IDEA, part B, subpart E, section 300.530.

[4] IDEA, part B, subpart E, section 300.530.

[5] Code of Federal Regulations, 2005.  Title 34:  Education.  Section 300.536, “Change of Placement Because of Disciplinary Removals.”  This regulation was added to the Code in 2005, to clarify the 2004 amendment of IDEA.

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.