Category Archives: Education

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

Autism, Bullying, Education, Human Rights, Suicide, , ,

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  And so the school district rescinded their permission for him to transfer, leaving the child “devastated.”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 Newsbreak:  https://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

Autism, Autistic Intelligence, Bullying, Education, Psychiatric hospitalization, , ,

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?”

Autism, Bullying, Education, Human Rights, Police Abuse, School Discipline, Special Education, , ,

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!

Education, Special Education, , ,

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 Experience

Education, Human Rights, School Discipline, Suspension and Expulsion, , , , ,

Many students—not just autistic ones—believe that they have been unfairly suspended or expelled from school.  Many students—not just autistic ones—do not fully understand why they were suspended or expelled (sometimes it is hard for adults to figure that out either).  Suspensions are very often used as a punishment in U.S. schools not only for serious offences, but also for all kinds of minor infractions of the rules.  Crying in school may lead to unofficial suspensions, in which parents are told to pick up their children and take them home.  But students may be officially suspended for not meeting the school dress code (this includes even very young children, whose parents pick out their clothes), for having the “wrong” hairstyle, or even for carrying a backpack with the “wrong” picture on it.[1]  Most school codes of student conduct still include vague terms for misbehavior, such “insubordination” or “willful defiance,” which individual teachers can interpret subjectively.  In recent years, some major school districts have removed this language, but in many other places students can still be suspended for eye-rolling, walking away from a teacher without being dismissed, failing to complete homework, or even tapping their feet on the floor.[2]

Sometimes just needing to use the restroom at an inconvenient time for the teacher or other school staff member will be enough.  In December 2018, an 11-year-old autistic African-American child asked to use the bathroom in his elementary school.  The principal of the school, who was escorting him and another student back to their special education classroom, refused to let him go–even though access to the restroom at any time was the rule for Special Education students.  The child couldn’t get around the principal to reach the nearby bathroom, so he went out the back door of the school to find another restroom.  The principal then ordered school staff to lock all the doors and not let the student back in.  He wasn’t trying to run away—in fact, he spent 15 minutes circling the school, as teachers ignored his appeals for help, walking past him outside without speaking, and even pulling down the window blinds in his face.  Finally, another student took pity and opened a door for him.  The school sent his parents an incident report, but they failed to mention the dangerous and illegal lock-out—and the child received a two-day suspension for leaving the school building without permission.   Only after the school’s security tapes were reviewed did the true story come out.  The principal was then placed on paid administrative leave.[3]

 

Suspension and expulsion are over-used forms of discipline in American schools, for students of all neurotypes.  But autistic children face special challenges.  Sensory, emotional, or other stressors can drive them into meltdowns or shutdowns, during which their “fight or flight” instincts take control, sometimes leading to violent reactions. Meltdowns /shutdowns are clearly “manifestations” of autism, and so theoretically schools should respond to them with behavioral interventions.  Yet in practice, many autistic students face suspension, expulsion, and even arrest for what they do during these episodes. Students cannot control their own actions during meltdowns, so is it reasonable or fair for them to be punished in this way?

Moreover, many teachers don’t acknowledge their own role in triggering these problems.  In New Mexico, for example, a second-grader had a meltdown because his teacher yelled directly into his face, and then took away his Ipad, which was a very important comfort object for him.  She caused the meltdown, during which she was struck in the nose, causing a bruise.  Yet not only was the child—who happens to be black—suspended from school for having a meltdown, but his teacher actually pressed battery charges against an 8-year-old.[4]

In Florida, an autistic fourth-grader who had just gone through a long, stressful day of testing, was bothered by the noise when his teacher put on a movie (presumably as a reward for the other students.)  Seraph put on headphones and sat at a computer to distract himself from the noise, but he could still hear the movie.  So he started tapping computer keys loudly to drown it out.  That’s where the trouble began.  The teacher called in the dean, the assistant principal, and the school resource officer to remove him from his classroom.  He was willing to leave, but, looking for a quiet place to recover from the noise, he entered the school media room.  At this point, another teacher began reading a book to him—yet more noise.  Seraph, with his hands covering his ears, went over to the teacher and knocked at the book, using his elbow.  (The teacher was untouched).  The school resource officer then tackled him to the ground with so much force that Seraph ended up with carpet burns on his face.  He was suspended for several days—not because anyone was injured or even threatened, but simply because he was autistic and overstressed by noise.[5]

 

It is not unusual for autistic students to be get in trouble for leaving their classroom, or even their school without permission.  What is unusual is for schools to acknowledge what autistic students remember–that they often fled to avoid bullying:

I received three suspensions from my school during my time there, two for leaving the room to seek sanctuary in the library when the entire class (teachers included) united in mocking me, and one for deliberate non attendance over a period of days (truanting).[6]

Autistic students are disproportionately bullied at school.  And within a few years of being in school, they realize that the advice they are given—”speak to a member of the school staff”—is almost always ineffective.  School staff rarely stop the bullying.  They may fail to see what happened (and bullies are very adept at flying under the radar).  They may believe the bullies rather than the victim—because a highly verbal neurotypical bully can be more convincing than an autistic victim, or because there may be multiple bullies whose united testimony outweighs that of the victim.  (This is what happened to my own daughter.)  School staffers may simply not care.

one time a boy way bigger than me punched me in the face and made my nose bleed, and a teacher caught me inside trying to clean myself up, and I got yelled at for being inside during recess even though I was dripping with blood; nothing was done about the boy who hit me . . .[7]

People beat me up and they’d go free and I’d be in detention.[8]

Teachers may even dislike the autistic student and want him or her to suffer.  One autistic student listed reasons why she hated school:

Being bullied and being told it was my fault.

Being my teacher’s punching bag.[9]

 

The only solutions for these students are either to endure the suffering (the trauma this causes was described in an earlier post), to run away (and thus be suspended), or to retaliate—and retaliation often ends in their being suspended or expelled as well.  Here is “Aristophanes’s” description of his experience at school:

Attempting to avoid a fight, getting flat out sucker punched instead, and going to the principal who gave me as much detention as the aggressor, reasoning ‘you’re going to be an adult soon, you need to learn to solve your own problems, that’s the lesson here.’

Going back literally a week later, getting punched again, and retaliating by stomping my heel on the kid’s ankle, fracturing his tibia and earning me a suspension that go around.[10]

Other autistic students remember fighting with their bullies, and then being punished for it—while the bullies got off scot free:

Once [a privileged person] tried to stab me and he got off without a punishment simply because [his] family was rich.  I got a suspension and was threatened with expulsion because i kicked him in the stomach and dropped him to the ground.[11]

An increasing number of parents are filing lawsuits against school districts that allow things like this to happen.  For example, a Staten Island teenager was suspended for three days because he allegedly pushed to the ground bullies who had been physically assaulting him for years—including breaking his arm at one point.  His parents sued the school district, “claiming he was wrongfully punished for something his school should’ve done — and that’s stop his bullying.”[12]  A lawsuit pending in Cinncinnati, Ohio, charges a local school district with denying a student’s right to FAPE, both by refusing to recognize his disabilities and provide appropriate accommodations, and by failing to address the constant bullying he was subjected to.  The suit alleges that the school district suspended this young man multiple times, when he fought back or even just shouted at the students bullying him.  Even when he didn’t fight back, the school sometimes disciplined him.  In one of the incidents reported in the lawsuit, a bully spit on him, and called him names on the school bus.  It was the victim, not the bully, who was suspended for this incident.[13]

Perhaps the most significant problem with the use of suspension and expulsion as forms of discipline is that many autistic students hate school, and therefore prefer being removed from it.  This is the attitude of “Agent Smirnoff”:

I thoroughly enjoyed my time in suspension, as it granted me peace from the incessant bullying and allowed me to play on my computer all day.[14]

“deog” felt the same was about expulsion:

The highschool years are very difficult. . . . My misery and depression was profound. I got expelled by my sophmore year. i was ditching certain classes almost every single day…    I was so happy when I got expelled and I have no regrets about that because I was just done . . .[15]

It is fairly common for autistic and other students to misbehave on purpose in order to get some relief from their sufferings at school.  Sebastian, a student in New Mexico “relished being sent to in-school suspension, which he came to see as a haven from the stress of the classroom. Once, his mom says, he randomly punched a classmate in the parking lot in an effort to get sent back to the peace and quiet of in-school suspension.”[16]

When I was in grade school, I would purposely act up in order TO GET suspended. Sure my mom wouldn’t let me watch TV and stuff and would sometimes make me work on store bought workbooks, but I didn’t care. I just didn’t want to be at school. Suspension was a reward to me. The school was starting to catch on that I was acting up on purpose and tried something called an “in school suspension”. I was in a classroom with a “babysitter” and with the exception of the “babysitter”, I was all alone. I was allowed to draw and color all day long. The classroom I was in was even quieter than my own house. I perfered quiet. Some punishment.[17]

 

The problem with students seeking out suspension and even expulsion for relief from stress is that they don’t realize the implications for their future.  Having a “record” is not helpful when applying to college or looking for a job, but many autistic students find school so painful that they don’t care.

Instead of suspending autistic students at such high rates, school districts should be looking for ways to make school more tolerable for them, ways to prevent them from having meltdowns, ways to seriously address the problem of bullying.

 

[1] Morgan Craven et al., “Suspended Childhood: An Analysis of Exclusionary Discipline of Texas’ Pre-K and Elementary School Students, Updated with 2015-16 Data,” for the Texas Appleseed organization, November, 2015; updated March, 2017: http://stories.texasappleseed.org/suspended-childhood-updated.

[2] Nina Agrawal, “California expands ban on ‘willful defiance’ suspensions in schools,” Los Angeles Times September 10, 2019:  https://www.latimes.com/california/story/2019-09-10/school-suspension-willful-defiance-california.

[3] Jessica Oh, “Child with autism locked out of school,” report on Kiro 7 television in Seattle, January 23, 2019:  https://www.kiro7.com/news/local/child-with-autism-locked-out-of-school/908564250/.  This incident was widely reported elsewhere.

[4] “Teacher files charges against 8-year-old student who hit her”, report on KQRE TV, April 14, 2018:  https://abc13.com/education/teacher-files-charges-against-8-year-old-student-who-hit-her/3344462/.  The incident was also widely reported.

[5] David M. Perry, “America Keeps Criminalizing Autistic Children,” Pacific Standard June 12, 2017:  https://psmag.com/education/america-keeps-criminalizing-autistic-children.

[6] Agent Smirnoff, in the “Is Suspension Really a Punishment?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?t=194004.

[7] dragoncat, in the “Things You Hated About School” discussion on the Autism Forums website (October 28, 2017):  https://www.autismforums.com/threads/things-you-hated-about-school.22361/#post-443119.  It is worth noting that this topic elicited four pages of responses.

[8] tlc, in the “Things You Hated About School” discussion on the Autism Forums website (March 30, 2018):  https://www.autismforums.com/threads/things-you-hated-about-school.22361/#post-443119.

[9] SchrodingersMeerkat, in the “Things You Hated About School” discussion on the Autism Forums website (October 27, 2017):  https://www.autismforums.com/threads/things-you-hated-about-school.22361/#post-443119.

[10] Aristophanes, in the “Why School Sucked” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?f=3&t=357585&start=60.

[11] The Musings of the Lost, in the “Why School Sucked” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=357585&start=60.

[12] Elizabeth Rosner and Chris Perez, “Autistic student suspended for standing up to bullies, $5M suit claims,” New York Post August 17, 2018:  https://nypost.com/2018/08/17/autistic-student-suspended-for-standing-up-to-bullies-5m-suit-claims/.

[13] Max Londberg, “Suit: Winton Woods Officials Allowed Bullying of Student with ‘Significant Autism’ for Years,” Cincinnati Enquirer August 19, 2019:  https://www.cincinnati.com/story/news/2019/08/19/suit-winton-woods-officials-allowed-bullying-student-autism/2054763001/.

[14] Agent Smirnoff, in the “Is Suspension Really a Punishment?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?t=194004.

[15] deog, in the “I’m So Done!!!! discussion on the Autism Forums website: https://www.autismforums.com/threads/im-so-done.27361/#post-552380.

[16] Ed Williams, “Criminalizing Disability,” Searchlight New Mexico, May 7, 2019:

[17] MagicMeerkat, in the “Is Suspension Really a Punishment?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?t=194004.

Suspension and Expulsion: The Data

Education, Human Rights, School Discipline, , , , ,

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

Education, Human Rights, School Discipl, School Discipline, ,

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

Autism Diagnosis, Education, , , , ,

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:

Meltdowns in School: Much Better Practices

Anxiety, Education, Human Rights, Myths about Autism, Restraint and Seclusion, , ,

It is perfectly possible to reduce both the frequency and violence of student meltdowns, which will, in turn, reduce the need for restraint and seclusion in schools.[1] However, this requires a change in attitude on the part of educators, towards seeing autistic children not as willfully naughty or manipulative, but as overwhelmed and frightened.  Teachers, aides and other educators also need to be willing to observe these children’s behavior carefully and make “meltdown plans” in advance.  Given the already heavy burden carried by educators today, this may seem like a lot to ask, but dealing effectively with meltdowns will certainly reduce educators’ stress in the long run.

The best practical advice for teachers on this subject that I have found comes from three books. Deborah Lipsky and Will Richards’ Managing Meltdowns:  Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism focuses on interventions that can be used during a meltdown.  Deborah Lipsky’s From Anxiety to Meltdown:  How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively, and Geoff Colvin and Martin Sheehan’s Managing the Cycle of Meltdowns also offer guidance on ways to prevent (or at least limit the number of) meltdowns in the first place.[2]  Lipsky is herself autistic, has experience working as and for first responders (EMTs, firefighters, police officers), and writes from the perspective of her own personal experiences and those of other autistic people she has worked with.  Her collaborator for the first book, Will Richards, is a clinical psychologist, with extensive experience treating autistic clients.  Colvin and Sheehan are professional educators who have spent decades working with autistic children in schools. Despite their very different backgrounds, their conclusions are remarkably similar. 

All these writers clearly distinguish meltdowns from temper tantrums.[3] And all of them describe melting down as a process, which can be interrupted by an observant and skilled teacher or first responder.  Colvin and Sheehan propose a six-phase model of the “meltdown cycle,” in which a student who had been in a state of calm is subject to one or more triggering events, which then lead to increasing agitation until the point of no return is reached and he or she melts down.  Once the meltdown has played itself out, there is a period of re-grouping during which the student is beginning to recover but may easily melt down again if pushed too hard.  Finally, the student becomes calm enough to start over, although with some lingering anxiety, uncertainty, and irritation.[4] Lipsky does not present her observations in quite the same way, but a careful reading of her book shows that she holds a very similar view of the meltdown as a process.[5] 

“Avoiding it in the first place is the most effective way of preventing a meltdown.”[6]  Both Lipsky and Colvin and Sheehan offer extensive advice on how to maintain a student with autism in the calm phase, which essentially comes down to using best practices for teachers of autistic students:  providing sensory diets as needed, using visual supports, having clear rules (systematically taught to the whole class), planning ahead, and adjusting the curriculum as needed.  The three authors also encourage teachers and aides to identify and limit as much as possible triggers that may disrupt a student’s calm participation in class—whether these are sensory issues, unexpected breaks in routine, or something else.[7]

Teachers must also learn how to recognize the signs of increasing agitation, and how to intervene to de-escalate the situation with reassurance, comfort, and support.  According to Colvin and Sheehan, agitation is “normally an observable manifestation that something is wrong with the student.”[8]  While some students move very quickly through the agitation phase to a full-blown meltdown, offering little time for intervention, much more often there is a period of agitation during which an observant teacher will notice increased stimming, wriggling, pacing and noise-making, or decreased interaction with others, including partial or total loss of the ability to communicate, non-compliance with directions, covering eyes or staring into space, hiding hands or even seeking isolation.[9]  Training teachers to recognize these signs can have a huge impact on the frequency and violence of meltdowns in their classrooms.  When an autistic student is becoming agitated, the teacher or classroom aide can step in to provide reassurance and empathy, offer opportunities for breaks or for movement to quiet spaces, and encourage self-management (if the student already has some skills in this area).  Reducing an autistic student’s agitation is the key to preventing meltdowns.  It is essential that school personnel not become agitated themselves during this phase, as this will simply increase the student’s agitation and make a meltdown more likely.[10] 

If a teacher misses or ignores the signs, the student’s agitation will continue to increase until they reach a “point of no return,” after which a meltdown is going to occur no matter what.[11]   And once the meltdown begins, it will need to run its course, which typically ends when the child is too exhausted to continue.  School personnel and school police officers must recognize that at this point the student cannot control her or his behavior, and neither can they.  Shouting commands at a frightened child in the middle of an instinctual fight-or-flight reaction can only make the situation worse. Instead, the school should already have decided on an action plan and included it in the student’s IEP.  (Obviously, if a child is having meltdowns in school, he or she should have an IEP).  Staff should be trained in advance in ways of providing support for the melting-down student, by limiting additional sensory input, remaining calm, staying nearby (but not too close), and saying encouraging things in a low-pitched, slow voice.[12]  According to Lipsky, the calm and sympathetic use of the student’s name during a meltdown can be especially helpful.[13]  Educators should know how to calmly and quietly guide the student to a safe place and the meltdown plan should always ensure that someone observes the child while he or she is there.  If there is an immediate threat of injury to the student or those nearby, strategies should be in place for using (and later reporting) safe forms of restraint as a last (not first) resort.  Under some circumstances it may be better to clear the classroom of other students, until the meltdown is over. [14]

When the meltdown is past, it is cruel and counterproductive to criticize the student—who is physically and emotionally exhausted, and probably already deeply embarrassed about/ashamed of what happened.[15]  It should be unnecessary to say that police involvement after the meltdown is ended can only be counterproductive.  Neither is it useful to interrogate the student about why the meltdown happened.  (Discussion of the meltdown can occur sometime later—perhaps even the following day.)  Autistic children are still emotionally labile during the “regrouping” phase and may escalate into a second meltdown if pushed too hard.  Rather, the teacher or an aide should continue to offer quiet support and can encourage the student to use a stim toy or pursue their special interest as a way of bringing them back from the fight for survival into the ordinary world.[16]

Eventually, the student will return to a non-agitated, relatively normal state during the “starting over” phase, and can return to the classroom (if they left it during the meltdown).  Nevertheless, they may still be feeling some anxiety, irritability, or uncertainty, and should not be pushed too quickly to engage in normal learning activities.  Concrete tasks, which the student has already shown he or she can perform, are the best activities for this period; engaging in such tasks can help the student gain confidence and eventually return to their original state of calm.[17]

Good teachers here and there throughout the United States have already learned how to manage meltdowns successfully, using these or similar techniques.  It is time for such techniques to become standard practice in all of our schools.  But it all starts with changing the attitudes of the adults involved towards the autistic students they serve.

[1] Grafton Integrated Health Care, a for-profit behavioral health organization, has claimed that its proprietary “Ukeru model” has reduced incidents of restraint by 99% and incidents of seclusion by 100% over the course of 14 years (2003-2016), in community as well as institutional settings.  They claim that staff injuries from restraint have declined by 100% in community settings, and 97% in institutions:  Jason Craig and Kimberly Sanders, “Evaluation of a Program Model for Minimizing Restraint and Seclusion,” Advances in Neurodevelopmental Disorders 2 (2018), 344-352.  The authors of this paper are affiliated with Grafton, and I have not been able to discover any corroborating analyses conducted by unaffiliated scientists. 

[2] Deborah Lipsky and Will Richards, Managing Meltdowns:  Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism (London:  Jessica Kingsley, 2009); Deborah Lipsky, From Anxiety to Meltdown: How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively (London:  Jessica Kingsley, 2011) and Geoff Colvin and Martin Sheehan, Managing the Cycle of Meltdowns for Students with Autism Spectrum Disorder (Thousand Oaks, CA:  Corwin, 2012).  Another excellent book on this subject is Judy Endow’s Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (Shawnee Mission, Kansas: Autism Publishing Company, 2009).

[3] Lipsky and Richards, Managing Meltdowns, section entitled “Are Meltdowns and Temper Tantrums the Same Thing?” (I am using the Kindle edition of the book, which has no page numbers); Lipsky, From Anxiety to Meltdown, p. 108, 135-42, and especially 149-52 (on determining whether behavior is a tantrum or a meltdown).  Incidentally, Lipsky also offers some very useful suggestions for dealing with tantrums, even though her main focus is on meltdowns:  see pp. 142-49Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 22-25.

[4] Colvin and Sheehan, Managing the Cycle, pp. 29-30.

[5] Lipsky, From Anxiety to Meltdown, see especially, p. 127.  Judy Endow has a similar model: Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (Shawnee Mission, Kansas: Autism Publishing Company, 2009), pp. 11-46.

[6]    Lipsky, From Anxiety to Meltdown, p. 229.

[7] Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 63-108; discussion of potential triggers is a particular strength of Lipsky’s book, From Anxiety to Meltdown, pp. 161-214.

[8] Colvin and Sheehan, Managing the Cycle of Meltdowns, p. 39.

[9] Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 40-43; Lipsky and Richards, Managing Meltdowns, section on “What Are Some of the Warning Signs of a Potential Meltdown?”

[10] Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 109-22.

[11] The phrase “point of no return” is used by Judy Endow, Outsmarting Explosive Behavior, pp. 35-40.  She uses it to emphasize that once a child has reached this point they are no longer in control of their behavior; making a meltdown inevitable.

[12] Lipsky and Richards, Managing Meltdowns; Lipsky, From Anxiety to Meltdowns, pp. 216-22; Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 135-36

[13] Lipsky, From Anxiety to Meltdown, p. 221.

[14] Colvin and Sheehan, Managing the Cycle of Meltdowns, p. 123-41; compare Lipsky, From Anxiety to Meltdown, p. 221.

[15] Lipsky, From Anxiety to Meltdown, pp. 110, 126, 141.

[16] Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 142-53.

[17] Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 49-51, 154-68.