Tag Archives: Autism and Human Rights

Suspension and Expulsion: The Experience

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

Removal from School for Disciplinary Reasons: The Law

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

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

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

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

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

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

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

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


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

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

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

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

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

Civil Rights for Nonspeakers — Ido in Autismland

The traditional term for not speaking is ‘dumb.’ That says it all. If someone can’t talk then they are ‘dumb.’ I am dumb, apparently. The thesaurus offers these synonyms for dumb: among them mute, speechless, silent, and then fifty additional synonyms for stupidity, including the colorful pinheaded and dim-witted. The bias equating intelligence with speech…

Civil Rights for Nonspeakers — Ido in Autismland

Worst Practice

Trigger warning: descriptions of abusive practices.

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

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

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

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

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

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

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

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

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

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

There are better ways.


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Unending Nightmare

Trigger warning: discussion of suicide, psychiatric abuse

It’s been five weeks now, and beloved daughter is still locked in a nightmarish “mental health” ward, with a sadistic psychiatrist who refuses to believe that she’s autistic (she was first diagnosed at age 3 and multiple times thereafter) and who punishes her for acting autistic (“you’re just looking for attention”).

Seven months ago she was raped while asleep in her own bed in her own apartment. So the asshole psychiatrist, who knows about this, assigns male techs to watch her shower and use the toilet, and sometimes to “observe” her overnight. On those occasions she forces herself to stay awake all night because she’s afraid of what will happen if she sleeps.

Her only comfort in the ward is a little stuffed dog toy—so they punish her by taking it away from her if she’s not “compliant” enough.

The idiot psychiatrist seems unable to grasp the fact that she is suffering the aftereffects of multiple traumas, and has decided that she must have borderline personality disorder—despite the fact that she doesn’t come close to meeting the DSM-V diagnostic criteria.  So they have started hounding her to admit that she’s “manipulative.”

She wasn’t in very bad shape when she went into this place—she had made a kind of half-hearted suicide attempt.  But now she is in a really terrible state of mind, and I’m afraid she really will kill herself from the trauma of this hospitalization.

We WILL sue the hospital.  Any suggestions about individuals or organizations that would like to join in?

 

 

 

The Impact of Bullying: Internalizing Disorders

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

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

The Impact of Bullying Internalized

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Education of Autistic Children, 1975-1990

The efforts of advocacy groups such as the National Federation of the Blind, the National Society for Crippled Children (later known as Easterseals), and the Association for Retarded Children (today known simply as the ARC) gradually increased public awareness of disabled children and the difficulties they faced during the 1950s, 1960s and early 1970s.  Under pressure from these groups and from their constituents, Congress began investigating the lack of educational opportunities for the disabled, and then experimenting with legislative solutions, such as offering grants to school districts for the development of (segregated) educational programs for the disabled. These early legislative efforts met with only limited success, however.  In 1971-72, it was estimated that only 17 states were educating even half of their identified children with disabilities; many other states were offering education to less than a third.[1]  At the same time, exposés of the horrible conditions under which disabled children lived in many state institutions were further increasing public demand for the placement of these children in real schools.[2]

Changes were occurring in the courts, as well.  After the Supreme Court decision in Brown vs. the Board of Education (1954), which highlighted the evils of segregating schoolchildren by race, advocacy groups and sometimes individual parents began bringing lawsuits against school districts for excluding and segregating children based on disability.  Many of these lawsuits failed, but the courts found in favor of the plaintiffs in several significant cases in the early 1970s, establishing the principles that even children with severe disabilities were entitled to an education, and that local districts could not use the excuse of lack of funds to exclude disabled children from school.[3]

The combination of increased public pressure, legislative precedent, and court decisions eventuallly led to the passage of the landmark Education for All Handicapped Children Act (PL 94-142) in 1975.[4]  The EAHCA mandated that all children, even the most severely disabled, must receive a “free, appropriate,public education”—thereby laying the foundations for our current system of special education.  It required that school districts identify the disabled children within their borders and then develop a plan for them to receive the educational services they needed.  In order to be “appropriate,” their education should come as close as possible to that offered to non-disabled peers (while still being tailored to the needs of the individual child), and should be offered in the “least restrictive environment” possible—ideally in the same classroom, or at least in the same school building as their peers.  The Education for All Handicapped Children Act also laid out processes through which concerned parents could challenge a school’s decisions about their child’s education.  In the decades since 1975, EAHC has been repeatedly reauthorized and refined (and in 1990 re-named, as the Individuals with Disabilities Education Act, or IDEA).

Passing such a law was a challenge in 1975, but implementing it has proved even more difficult.  To begin with, there have always been funding shortfalls.  In the EAHC, the federal government promised to cover 40% of the costs of educating children with disabilities, but in reality the highest percentage of costs ever covered was around 17% and more often it has been around 11-12%.[5]   Even when the states fulfilled their own financial obligations (which has not always been the case), there has never really been enough money for schools to work with.  One result is that the essential infrastructure for educating disabled children—ramps, accessible bathrooms, signs in braille, etc.—were missing from almost all schools in 1975 and remains substandard in many places even today.  (Fans of the new television show “Speechless” will remember the scene in which the mother of a child in a wheelchair, who has been asked to use the same inadequate ramp used to move the school’s trash bins, sarcastically challenges the school principal to distinguish between people and trash.)

In 1975 most school administrators knew little about disabled children, and even less about the supports they needed to thrive in school; most teachers had no training at all in working with them.  This situation has improved greatly over the decades, although there still remain many opportunities for improvement.  In 1975, however, dealing with kids who were deaf or blind, or those who had motor challenges was considered a major challenge.  The struggle to provide a “free, appropriate, public education” for a psychotic or mentally retarded child, let alone one with the still rare diagnosis of autism, was overwhelming.[6]  The fact is, when the Education for All Handicapped Children Act was passed, most educators had never even heard of autism.  (Hence the appearance in education journals during the late 1970s of various articles designed to explain the condition to them.[7])

What, then, were teachers to do when they were assigned to teach some of the few children diagnosed with autism?  At first, far too many settled for simply “killing time.”  The author of a 1980 paper took a very dim view of the schedule in use in one autism classroom she had visited:

Following such a schedule, it seems assured that, after 11,340 hours of educational opportunity over 12 years of schooling, the students would realize 1,800 hours of bathroom; 2,340 hours of snack, choices, circles, and goodbye’s; 2,880 hours of playground; and assuming that ‘centers’ equals ‘instruction,’ 2,520 hours or 2-2/3 years of instruction.  Unfortunately, approximations of such a schedule can be found in too many classrooms for students with autism and other severely handicapping conditions.[8] 

She proposed a much tougher schedule, focused on teaching speech and other “functional” skills to these children.  “Functional” became a buzzword in the field of special education over the course of the next decade, a way of identifying useful life skills ranging from toileting to meal preparation to riding the bus.  The adjective seldom referred to academic skills, because, as we shall see, these were increasingly viewed as inappropriate, or “non-functional” for those with autism.

In early state efforts at implementing the Education for All Handicapped Children Act, when autism was mentioned at all, it was typically listed among the emotional disorders, along with schizophrenia.[9]  This was in keeping with the traditional understanding of autism that had prevailed in the United States since Leo Kanner first wrote about the condition in the 1940s.  When teachers and administrators in the late 1970s encountered a child who had actually been diagnosed as “autistic,” they were usually told that the child’s problems were psychogenic, caused by cold, withdrawn parents (more specifically “refrigerator mothers”).  As late as 1985, a handbook written for teachers in mainstream classrooms in Minnesota listed autism as an emotional disorder, although the author noted that “the classification of autism as an emotional disturbance is currently being questioned.”[10]

Its classification was being questioned by educators in the 1980s, because scientists’ views of autism had changed dramatically during the 1970s.  Researchers like Michael Rutter in England and Bernard Rimland in the United States had come to see the condition as a developmental rather than an emotional disorder—as “biogenic,” rather than “psychogenic” in origin.  References to the work of these researchers began to appear in educational journals in the late 1970s,[11] but the new understanding of autism took at least another decade to achieve mainstream status.  Nevertheless, as educators gradually began to accept the idea that autism was a developmental disorder, they also began to adopt scientists’ faulty assumptions about autism and intelligence.[12]  By the late 1980s, children with a diagnosis of autism were automatically assumed to be intellectually disabled (“mentally retarded” in the terminology of the day).  What had been two separate diagnostic categories in earlier decades—the rare “autistic” and the much more common “mentally retarded”—began to flow together to form one.  In educational circles autism came to mean simply mental retardation accompanied by what were usually called “bizarre” behaviors.

And this meant that even those autistic children who appeared quite bright came to be viewed as cognitively impaired—in other words, their apparent abilities were deceptive.  It might look like an autistic child could read, but he was by definition unable to comprehend what he was reading;  it might look like an autistic child could multiply, but she was merely performing rote actions, without understanding what those actions meant.[13]  Attempting to provide further academic instruction beyond what was needed to count change in a store or read a street sign was futile at best.  And so the main subjects taught in classes specifically designed for autistic children were speech and language learning, and “functional” life skills—as evidenced by the frequent appearance of articles on techniques for teaching these subjects in educational journals during the 1980s, and the almost complete absence of articles on ways to teach autistic students academic skills such as reading, writing, or math.

The passage of the Education for All Handicapped Children Act in 1975 meant, then, that more autistic children than ever before were served by public schools.  However, they were not served well by those schools, partly because of the faulty expectations mentioned above, and partly because of faulty diagnoses.   Few doctors knew much about autism in the 1980s, and they very often misdiagnosed autistic children.  In 2013, there was a brief discussion on “What were you diagnosed with in the 80s?” on the Wrong Planet website. [14]  It turns out, as we might expect, that although many of the participants had been taken to multiple specialists in their childhood, almost none had been diagnosed with autism.  Instead, they received a variety of labels.  Some—those who had good verbal skills and the ability to disguise their autistic characteristics—were declared “normal” (if a little “weird”).  They were often able to remain in general educational classrooms.  A subset of this group was diagnosed with learning disabilities (especially attention-deficit/hyperactivity disorder) and received some supports from their schools.  Most, however, still struggled to learn without supports, suffered from severe bullying, and far too often dropped out.  As one contributor put it:  “Many people with AS back in the 1980s just struggled or coped as best they could without any diagnosis. Unless you had a ‘breakdown’, or were caught trying to commit suicide, or were in trouble with the police (‘delinquent’ or ‘troubled’) you were usually left to sink or swim.” Another reports:  “I was just considered weird, strange, outcast, bullied and generally rejected by my peers. I just learned to function and survive by myself, for myself, with myself.” [15]

Many other autistic children were labelled mentally ill (obsessive-compulsive, schizophrenic, severely depressed, bipolar, socially anxious, borderline-personality).[16]  In theory, the public schools were expected to serve the “emotionally disturbed,” but few were equipped to do so effectively, so most of these children had their educations interrupted by visits to psychiatric institutions.  Still others were labelled “mentally retarded.”  One highly articulate participant in the Wrong Planet discussion describes how she was originally thought to be autistic when she was examined back in 1986; however, her doctor eventually “settled on the diagnosis of Mental Retardation because I did not fit all the requirements for Classic Autism.”[17]  She spent years bouncing back and forth between special education and mainstream classes.

And finally there were the few who were actually diagnosed as autistic.  They, too, were considered “mentally retarded” (usually “profoundly mentally retarded”) because intellectual disabiity had become an integral part of the educational establishment’s understanding of autism.  The new educational outreach to disabled children had little impact on them.  In many states, the autistic and the “profoundly mentally retarded” were still considered “ineducable,” and relegated to institutions where they received only a nominal education.  As Mel Baggs, a non-speaking, multiply-handicapped autistic puts it:  “I spent the majority of my teen years in either no school, institution schools, or special ed. And I knew that to the rest of the world none of us were real.”[19]  In other states, members of these groups were educated either in segregated schools or in separate special education classrooms within regular schools, that focused on communication and “functional” skills.[20]  This meant that many children who were actually quite bright—capable of learning and even excelling at academic subjects—were denied the opportunity to do so by the simple fact of their diagnosis and educational placement.  The educational goal had become simply to have them exhibit fewer “bizarre autistic behaviors,” and perhaps learn a few self-care skills.  And sadly, this remained the goal in many places well beyond 1990.

[1] Cited by Ruth Colker, Disabled Education:  A Critical Analysis of the Individuals with Disabilities Education Act (New York:  New York University Press, 2013), pp. 25-26.

[2] E.g., Burton Blatt and Fred Kaplan’s Christmas in Purgatory:  A Photographic Essay on Mental Retardation (privately distributed, 1966; republished 1974 by Human Policy Press in Syracuse, NY); Bill Baldini’s television reporting on Pennhurst State School and Hospital in East Vincent, PA, 1968; Geraldo Rivera’s television reporting on Willow State School for the developmentally disabled on Staten Island, NY, in 1972.

[3] Pete Wright, “The History of Special Education Law,” on the Wrightslaw website:  http://www.wrightslaw.com/law/art/history.spec.ed.law.htm.

[4] Ruth Colker, Disabled Education:  A Critical Analysis of the Individuals with Disabilities Education Act (New York:  New York University Press, 2013): see pp. 17-43 on the EAHCA.

[5] Marjorie Coeyman, “Leaving No Child Behind is Expensive,” Christian Science Monitor 12/26/2001, p. 19; Christina Samuels, “Special Ed. Law Wrought Complex Changes,” Education Week 35:12 (November 11, 2015).

[6] The statistics commonly used in the 1970s (based on research from the 1960s) placed the prevalence of autism at somewhere between 2 and 4.5 out of every 10,000 people.  Compare this with today’s prevalence statistics, which identify roughly 1.5 out of 100 people as autistic:  https://spectrumnews.org/news/algorithm-automates-efforts-estimate-autism-prevalence/.

[7] E.g., James McDonald and George Sheperd, “The Autistic Child:  A Challenge for Educators,” Psychology in the Schools 13 (1976), 248-56; Glen Dunlap,Robert Koegel, and Andrew Egel, “Autistic Children in School,” Exceptional Children 45 (1979), 552-58.

[8] 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.58.

[9] Jean Mack, “An Analysis of State Definitions of Severely Emotionally Disturbed” (pamphlet), (Reston, VA: Council for Exceptional Children, 1980), p. 10; J. Gregory Olley, “Organization of Educational Services for Autistic Children and Youth,” in Barbara Wilson and Anneke Thompson, eds., Critical Issues in Educating Autistic Children and Youth (Washington, DC:  United States Department of Education, 1980), pg. 13.

[10] Joan Schoepke, “Autism,” in Resource Manual on Disabilities, ed. Polly Edmund, Sue Peterson, et al., (Minneapolis:  Pacer Center, 1985), p. 89.  Oddly, in 1982 Hawaii shifted autism from the “emotionally disturbed” category to “other health impaired:”  Memo from Donnis H. Thompson (State Superintendant of Education) to District Superintendants, Principals, Special Services Teams and Special Education Teachers, “Addendum to “Programs and Services for the Orthopedically Handicapped and Other Health Impaired” Section of “Program Standards and Guidelines for Special Education and Special Services in Hawaii” (September, 1982).  The argument was that autism was distinct from mental retardation, emotional disorder, or learning disorder, and the only remaining category was “other health impairment.”

[11] Glen Dunlap,Robert Koegel, and Andrew Egel, “Autistic Children in School,” Exceptional Children 45 (1979), 552.

[12] See my earlier posts on “Autism and Intelligence.”

[13] Sam B. Morgan, “Understanding the Diagnosis of Autism:  Initial Counseling of Parents and Other Family Members,”, Meeting Their Needs: Provision of Services to the Severely Emotionally Disturbed and Autistic:  Conference Proceedings (Memphis, TN, 1984), pp. 48-49.

[14] “What Were You Diagnosed with in the 80s?” on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=243365

[15] Posts by One A-N and TalusJumper to the “What Were You Diagnosed with in the 1980s?” discussion on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=243365.

[16] “What Were You Diagnosed with in the 1980s?” discussion on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=243365.

[17] MusicIsLife2Me, “My Possible Wrong Diagnosis of Mental Retardation” on Wrong Planet:

http://wrongplanet.net/forums/viewtopic.php?t=217277.

[18] Charles Martel Hale, Jr.  “I Had No Means to Shout” (Bloomington, IN:  1st Books, 1999), p. 25.

[19] Mel Baggs, “Empty Mirrors and Redwoods,” published May 12, 2014 on the Ballastexistenz blog:

https://ballastexistenz.wordpress.com/2014/05/12/empty-mirrors-and-redwoods/.

[20] See the data provided by Douglas Biklen, “The Myth of Clinical Judgment,” Journal of Social Issues 44 (1988), pp. 132-33.

Joy and Autism 1

 

The most widely disseminated public narratives about autism outline the “tragedy” of the condition—the despair and misery it supposedly creates, especially among the parents of children with autism.  These narratives were brought to special prominence in the controversy surrounding Autism Speaks’s notorious 2009 ad campaign “I Am Autism,” but they are also extremely common in the titles of books and articles, as well as in everyday conversation.  The fact is, however, that many parents of autistic children find their family life far from “tragic.”  And more importantly, many autistic people describe their own lives in very positive terms, while still acknowledging the difficulties they face.

I wanted to start this series of posts on autism and emotion with a discussion of joy, because—although the word seldom appears in media accounts of autism, and although the emotion itself has seldom been studied by researchers on autism—autistic people themselves often write about joy, about the delight and deep pleasure they find in their special interests, in the sensory world around them, and especially in the practice of “stimming.”

Here is the incomparable Julia Bascom, in a blog post that has circulated widely within the neurodiversity community, entitled “The Obsessive Joy of Autism”:

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. . . .

It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.[1]

The very intensity of the autistic experience—the heightened sensory experience, the deep focus on special interests, the broad awareness of multiple stimuli—can cause considerable distress when beyond the individual’s control, but it can also give rise to astonishing experiences of beauty, delight, sensual pleasure, and joy when the individual can make use of that experience for her or his own ends.

Such moments of delight are achieved primarily through what scientists often describe dismissively as “stereotypic” or “repetitive” behaviors—hand flapping, rocking, spinning, bouncing, etc.  For many years, autism therapists tried to eliminate these behaviors, in an attempt to “normalize” autistic people.  The mantra “quiet hands” was regularly chanted in special education classrooms.  More recently, scientists and autism professionals have begun to recognize the importance of “self-stimulatory behaviors” (another scientific term for these actions) as a calming response to stressful situations.  It has therefore become less common for therapists to try to eliminate them completely, although it is still usually recommended that they encourage their clients to self-soothe in more “socially acceptable” ways (by playing with fidget toys, sitting in special chairs, etc.), rather than by the means of their own choosing.  However, I have never seen a scientist, teacher, or therapist recognize the importance of self-stimulation as a source of positive, indeed deeply positive, emotional experience.

The value of “stimming” is, however, a frequent theme of autistic writing (which scientists and other professionals who wish to understand autistic experience would do well to consult).[2]   Rocking, hand-flapping, and spinning are not only responses to distress, but also, and much more importantly, forms of play.  They provide intense satisfaction, mental stimulation, and sensory delight to autistic adults as well as children:

“When I flap I get a feeling of overwhelming joy and creative thoughts and images come from no where. My brain functioning becomes super fast and I can create perfect images or beautiful sentences in my mind.”[3] 

“I have difficulty regulating many of my body functions such as heat and cold or being overwhelmed by too much motion, light, sounds, etc. but I have access to a deep, deep, deep joy by manipulating movement, light, sounds, etc. on my own.[4]

“In the past year I have rediscovered the joy of stimming. I have unearthed a playfulness within me that I thought was lost.”[5]    

This “obsessive joy” is a wonderfully positive thing—that should be encouraged in autistic children and celebrated in autistic adults.  It can, however, also have an addictive quality, which I will discuss in my next post.

 

 

 

[1] Julia Bascom, “The Obsessive Joy of Autism,” Just Stimming blog (https://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/

[2] http://what-is-stimming.org/links/

[3] October 7, 2010 comment by “NothingsWrongWithMe” on “Understanding Hand-Flapping and What to Do (Or Not Do) About It,” on the Aspiring Dad blog (https://aspiringdad.wordpress.com/2008/01/30/understanding-hand-flapping-and-what-to-do-or-not-do-about-it/)

[4] “I is for Identity-first Language” April 10, 2015, on the Unstrange Mind blog (https://unstrangemind.wordpress.com/2015/04/10/i-is-for-identity-first-language/)

[5] “At the Intersection of Gender and Autism—Part 3” December 4, 2014, Musings of an Aspie blog (https://musingsofanaspie.com/tag/girlhood/)

 

Dear Neurotypicals: What if you use your words? — Yes, That Too

 

WOW!

 

If we don’t use our words, we won’t be indistinguishable. (What’s wrong with saying, “use your words”? Many, many things, including the part where it’s ignoring communication that you actually did understand because you didn’t like how it was phrased. Thanks, Neurodivergent K.)But it’s not just about words, is it? Once we’re using words, you want…

via Dear Neurotypicals: What if you use your words? — Yes, That Too