Tag Archives: Autism

Meltdowns in School: Much Better Practices

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Greta Thunberg’s Speech to Parliament

 

I have been admiring this young woman’s work to stop climate change for several months now.  Only yesterday did I learn that she was autistic.  Here are her words of wisdom to the British Parliament:

“My name is Greta Thunberg. I am 16 years old. I come from Sweden. And I speak on behalf of future generations.

I know many of you don’t want to listen to us – you say we are just children. But we’re only repeating the message of the united climate science.

Many of you appear concerned that we are wasting valuable lesson time, but I assure you we will go back to school the moment you start listening to science and give us a future. Is that really too much to ask?

In the year 2030 I will be 26 years old. My little sister Beata will be 23. Just like many of your own children or grandchildren. That is a great age, we have been told. When you have all of your life ahead of you. But I am not so sure it will be that great for us.

I was fortunate to be born in a time and place where everyone told us to dream big; I could become whatever I wanted to. I could live wherever I wanted to. People like me had everything we needed and more. Things our grandparents could not even dream of. We had everything we could ever wish for and yet now we may have nothing.

An Autistic Adult and the Horrors of the American Psychiatric System

My darling, sweet, smart, kind daughter has been imprisoned (her word) in the psychiatric system for three months now.   She has lost weight (and she didn’t weigh much to begin with), energy, her sense of identity, and virtually all hope.  We see little chance of her getting out, because the system—with its constant accumulation of small (and sometimes large) cruelties—appears specifically designed to make an autistic adult crazy.

Leaving aside the constant loud noises, the lack of privacy, the fluorescent lights burning into her brain, and the dreadful food, there are an endless number of other problems that increase her anxiety and depression.

For example, she hasnt seen the light of day for three solid months, and that alone was driving her insane, since being outside has always helped relieve her stress. Well, yesterday her cold and uncaring psychiatrist finally announced that she would be allowed outside on their little patio.  Sadly, however, she is still on one-to-one supervision, and must be accompanied by a tech everywhere.  And the techs simply dont feel like going out, so—despite being promised the “privilege” of a tiny bit of fresh air—she remains stuck inside.

She is anxious all the time, and one of the few ways she has of relieving that anxiety is pacing the halls  but the staff dont feel like walking with her.  They would rather sit and talk to their boyfriends or girlfriends, or play games on their phones  so they tell her to sit down and dont move, until she becomes so overwhelmed that she scratches her skin (again).

Another patient has been extorting possessions from her for weeks—threatening to hurt my daughter if she doesnt hand over her toiletries, art supplies, and the extra food we have brought in to keep her weight from dropping so fast.  The staff are perfectly well aware that she is being threatened (after all, someone has to be within ten feet of her at all times), but they just look the other way.  The social worker on the unit tells her that she has to be more assertive, but its hard to be assertive if you have no hope.

Today was the biggest blow, though.  My daughter has had a private room for all these months for reasons that are not clear to us.  Today, with no warning at all (so helpful for someone on the spectrum—*sarcasm*), she was moved to a room with another woman who has already made life miserable for two other patients.  (For one thing, she likes to sleep in the daytime and stay up all night with the lights on.)

But the move was not the worst of it.  The staff decided that it had to happen IMMEDIATELY, so they wouldn’t allow my daughter to carefully take down all the decorations she has taped to her walls over the months to make herself feel better.  Instead, within a matter of minutes, the staff had ripped down all the photos of her dog, the pictures of flowers she has colored in, the cards from her friends, and the collage we made her of “people who love me.”  Within five minutes the collage was shredded, the pictures and cards were torn, and one of her last layers of security was gone.

I’m done being circumspect about this.  I’m going to start naming the names of the institutions and individuals who are torturing my child and me.  The place where all this is happening is Andrew McFarland State “Mental Health” Center in Springfield, Illinois.  (The quotation marks are because whatever else is going on in this place, it’s certainly not mental health).  Supposedly this is the best of the state hospitals in Illinois, but not if you are autistic. And the psychiatrist in charge, who is quite skilled at prescribing medications (credit where it’s due), but who is otherwise rigid, cold, and unfeeling, is one Dr. Eberhardt, whom I very much hope burns in hell for all eternity.

 

 

 

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?

 

 

 

Hard Times in the Midwest

Trigger warning:  discussion of suicide.

 

Once again, I haven’t posted for a while.  This is because Deeply Beloved Daughter is doing badly.

She’s in her senior year of university now, and very successful academically, but the last six months have been a total disaster emotionally.

She was sexually assaulted (to her credit, she pressed charges and the guy is now in jail, but it was super hard).  Her sister developed a life-threatening illness, which really scared her.  Her grandmother, whom she felt very close to, died.  And one of her best friends from high school committed suicide.  One trauma after another.  And all through this, she maintained her mask of being “normal”/neurotypical (her choice, not her parents) and worked hard at school  But the additional pressure of final exams did her in.  She began self-harming and talked about suicide.

So here she is, in her third week on a psychiatric unit where no one understands anything about autism (we had to explain meltdowns to them), where she can’t escape the fluorescent lights or the noise, where the staff are constantly criticizing her, and where she’s being heavily drugged with useless and potentially very harmful stuff.  Two days after Christmas she goes before a judge who will probably commit her to a state hospital.  (Yes we have lawyers and expert opinions, etc., but we are not very hopeful).

Those of you who pray, please pray for us.  Everyone else:  fight like hell for better psychiatric care for autistic people.

 

 

 

 

The Morality of Fighting Back Against Bullies

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

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

 

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

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

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

 

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

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

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

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

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

 

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

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

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

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

 

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

 

 

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

[2] “Aggression Against Self and Others.”

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

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

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

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

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

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

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

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

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

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

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

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

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

The Impact of Bullying: Internalizing Disorders

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

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

The Impact of Bullying Internalized

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bullying In Schools

Trigger warning:  descriptions of bullying

 

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

 

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

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

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

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

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

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Reactive “Aggression”: What Autistic People Have to Say

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

 

Reactive “Aggression”

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

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

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

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

 

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

 

 

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

 

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

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

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

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

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

 

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

 

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

 

 

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

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

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

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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