All posts by Megan McLaughlin

About Megan McLaughlin

Historian, gardener, writer, activist, animal lover, autism mom (the kind that supports autistic people...)

Six Days in the ICU

I mostly write about my older daughter–the one with autism–in this blog.  But younger daughter has her problems too, and last week they became acute.  She had been feeling off for about two months, with a persistent cough and fatigue.  But then about ten days ago she called up and asked me to take her to the E.R.  She was extremely pale and her tongue had a green (!) tinge.  I got her there, they took one look and started the process of admitting her to the hospital.  She was extremely anemic, and had a startling low number of platelets in her blood.  Two days later, she was transferred to the Intensive Care Unit at Barnes Jewish Hospital in St. Louis (where, I have to say, they have been absolutely fantastic with her care).

The immediate problem was an extremely rare (2 cases in every million people–lucky us!) blood disorder called Atypical Hemolytic Uremic Syndrome, in which the immune system attacks the blood.  She had to have repeated transfusions of blood and platelets, as well as an extremely scary drug that is the best treatment for AHUS, but increases the risk of contracting Meningitis by 1,000%.

After six days of intensive testing, during which she got sicker and sicker, they determined that the underlying cause was Lupus.  Once they started treatment for that, there was an immediate improvement.  She didn’t have to have lots of pain medicine and she could eat without vomiting.  Last night she was visited in the ICU by a therapy dog.  She was able to get out of bed and hug him, which made her (and us) burst into tears.

In short, the chaos continues here in the Midwest.  But what a relief to have her feeling better.

 

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The Bloody Cat in Exile

Alas, the poor cat.  Older daughter was recently hospitalized, so we took her dog into our house to care for until she was well enough to deal with him again.  The dog is a huge beast, of uncertain genetic heritage, and a total sweetheart.  Unfortunately, though, his idea of showing affection involves a lot of leaping around, barking, and wrestling, and our little feline is terrified of him.  So in the end we had to place her in a boarding kennel, for her own peace of mind.  Hoping to bring her home today, but Hobbes (the huge beast) is still with us, so we will have to find a way to keep her calm and the two of them apart for a little bit longer.

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.

What is Autism Acceptance?: The “You Keep Using That Word. I Do Not Think It Means What You Think It Means” Edition — We Always Liked Picasso Anyway

I have talked before about the differences between “autism awareness” and “autism acceptance” but I will give you the (somewhat) shorter version real quick: “Awareness” is lazy. It requires no action. It is rooted in ableism and done for non autistic people at our expense. “Awareness” is self narrating zoo exhibits and violations of privacy…

via What is Autism Acceptance?: The “You Keep Using That Word. I Do Not Think It Means What You Think It Means” Edition — We Always Liked Picasso Anyway

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.

 

Autism: When Awards Can Be A Negative Thing… — Inside The Rainbow

There was recently a thread on Twitter started by Claire Ryan who tweeted: “When is giving a child an award at school, not an award at all?” – along with this excerpt about an autistic boy called Jack. Jack reported being anxious recently in assembly as school were giving out awards. He would sit thinking […]

via Autism: When Awards Can Be A Negative Thing… — Inside The Rainbow

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.