Category Archives: Emotion

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.

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“the principal emotion experienced by autistic people is fear”

 

Autistics live with fear, in a way that most neurotypical people (including myself) find difficult to imagine.  Anxiety impairs quality of life in up to 84% of all autistic individuals.  Roughly 40% suffer from some form of clinically significant anxiety disorder–as compared to 18% of the overall population of the United States.[1]  As Sparrow Rose Jones puts it:  “I have anxiety so bad and have had it for so long that I didn’t even realize how anxious my baseline state is until the first time I smoked marijuana and experienced what it’s like to feel peaceful. My anxiety makes every day a struggle. Even my good days are riddled with anxiety.”[2]  Famous autistics like John Elder Robison and Temple Grandin–people who have written multiple books and appeared often in public– are by no means immune to this problem.  Although he hides it well, Robison confesses that “the fear and anxiety is always with me.”[3]  Grandin goes further.  She believes that “the principal emotion experienced by autistic people is fear.”[4]

 

Many of the behaviors that perplex neurotypicals arise out of fear.  Many–perhaps most–meltdowns, self-harm, aggression against others, eloping, and obsessive stimming can be attributed to a kind of existential terror, a feeling that the one’s very self is dissolving into a world of chaos and unpredictability.  Tito Mukhopadhyay’s memories of his early childhood include this kind of terror.  As a very young child, he became entranced by his shadow, which he understood as part of himself.  But at night, when his shadow disappeared, he would panic:  “I remember my voice screaming when I could not see my shadow anywhere around me.  I wondered whether it had left me here all alone.  I was afraid that I would lose my existence because my shadow had left.”[5]

 

To many autistics, the world is a wildly unpredictable, and therefore deeply frightening place.  Difficulties in reading and responding appropriately to cues from other people make it next to impossible to predict what will happen in social situations.[6]  For those readers who are neurotypical:  imagine how scary it would be if all the people we met wore masks that hid their facial expressions and voice filters that deadened variations in tone.  All the familiar clues that tell us whether the person we are dealing with is friendly or hostile, all the clues that tell us whether the words being spoken to us are meant literally, ironically, or sarcastically would be gone.  We could never be quite sure whether we were being accepted or rejected, praised or ridiculed, told the truth or being lied to.  This is the condition in which autistics must live every day.

 

But social anxiety, while extremely common, is only the tip of the iceberg.  Lack of predictability permeates every aspect of the autistic condition, including even experiences of the physical world and one’s own body.  Sensory issues are as much a source of fear as social interactions.[7]  A person with acute tactile sensitivities constantly worries about coming into contact with something painful;  another with sensitivity to sound may be so terrified by a sudden loud noise that she screams out loud.  A thirsty child may find himself suddenly unable to drink a favorite soda, without understanding that this time the soda was simply too cold for him to tolerate.  A meltdown follows, not only because the child’s desire for a drink has not been not satisfied, but, more importantly, because what had previously been a predictable source of comfort has now inexplicably disappeared.

 

Proprioception is awareness of the body’s location in space, in relationship to other objects.  Many autistics have relatively weak proprioception–they must live with constant worries about bumping into things or falling because they have misjudged distances.  Worse, they may sometimes not be able to feel their bodies at all—they experience an eerie sense of floating, of being ungrounded, that quickly becomes intolerable.  “It’s something I struggle with,” M. Kelter reports.  “My limbs, especially my arms, feel sort of disconnected, strange. It’s like they’re floating next to me, not really attached.”[8] These individuals may frantically seek deep pressure or jump up and down or purposely bang into walls, simply as a means of locating their own bodies.

 

Interoception, on the other hand, is awareness of the body’s internal processes and states–the ability to feel one’s own breathing, tell whether one is cold enough to need a coat, identify a physical sensation as hunger or pain.  “Many autistic people have dampened or muted interoception. We just don’t seem to notice what’s going on in our bodies until it reaches a level that other people would find intolerable. And often when we do notice it, it goes from ‘oh that’s happening’ to intolerable really darn fast,” notes Cynthia Kim.[9]  Poor awareness of bodily states can have dangerous consequences in the real world:  the person with hypointeroception (lack of ability to detect physical states) may forget to eat or sleep or obtain needed medical care.  It is not surprising, then, that mysterious bodily sensations—or the lack of any bodily sensation at all–may cause anxiety. But interoception is also closely tied to self-awareness and emotion.  The inability to sense how one’s own body feels right now or to predict how it will react in the future creates a fearful sense of one’s very self as insubstantial and fragile, easily disrupted or destroyed.  More on this in the next post.

 

 

[1]  See also Francisca van Steesel, Susan Bögels and Sean Perrin, “Anxiety Disorders in Children and Adolescents with Autism Spectrum Disorders:  A Meta-Analysis,” Clinical Child and Family Psychology Review 14: 3 (2011), 302-17.

[2] Rose Sparrow Jones, “Anxiety and Mental Health Accessibility,” from the Unstrange Mind blog, :  https://unstrangemind.wordpress.com/2016/05/05/anxiety-and-mental-health-accessibility/.

[3] by John Elder Robison, “Autism and Fear,” Psychology Today 2/8/2011:  https://www.psychologytoday.com/blog/my-life-aspergers/201102/autism-and-fear.

[4] Cited by Robison (see note 3) and by Liz Becker, “Fear and Autism,” on the Autism Support Network blog:  http://www.autismsupportnetwork.com/news/fear-and-autism-2478922.

[5] Tito Mukhopadhyay, How Can I Talk If My Lips Don’t Move?  Inside My Autistic Mind (New York, 2008),

[6] An eloquent expression of this anxiety can be found in the poem “Terrified of People,” by autistic teenager Iain Kohn:

https://themighty.com/2016/01/why-i-am-terrified-of-people-as-an-autistic-teen/

 

[7] Judy Endow, “Fear, Anxiety, and Autistic ‘Behavior’,“ on the Aspects of Autism Translated blog:  http://www.judyendow.com/advocacy/fear-anxiety-and-autistic-behavior/.  Endow notes:  “Because we do not have a way to predict if, when or how our bodies will serve us (or not!) it is quite common for autistic people to have some level of ongoing fear and/or anxiety.”

[8] M. Kelter, “The indefinite, luminous curve,” on the Invisible Strings blog:  http://theinvisiblestrings.com/the-indefinite-luminous-curve/#more-1225.

[9]   Cynthia Kim, “Interoception:  How Do I Feel?” on the Musings of an Aspie blog:  https://musingsofanaspie.com/2013/07/03/interoception-how-do-i-feel/

Addiction–or Necessity?

There appears to be a serpent in the paradise of stimming.  The activity can be so delightful that it becomes addictive—distracting autistic people not only from what other people want done (schoolwork, hygiene, ABA therapy), but even from they themselves want and need (food, sleep, communication, a meaningful life).  Many autism “experts” and parents worry about the potentially addictive nature of stimming, but most autistic people who write for an online audience unabashedly celebrate their stims, viewing them as wholly positive.  Many of them believe stimming actually helps them function better in the world, by allowing them to concentrate on what they need to do.  For these people, the stim is an effective tool, as well as a source of joy.[1]

There are, however, a few autistics who do view stimming as potentially problematic.  Ido Kedar, for example, writes:

It may start small but it can take over your life- not so much life, but all you do is less important than the stim itself if it is compelling. So, it is an escapist drug and it is addictive. I used to stim a lot as a young boy, especially before I could communicate. Now I stim less because I am engaged in life at a normal level, so I stay in the world as much as I can. I am thrilled about that because I don’t want to live in Autismland flapping, tensing, and twirling my life away.[2]

But to describe stimming as “addictive” certainly does not justify attempts to separate autistic individuals from their stims–especially if the goal is simply to make them “look normal.”  If the stim is a source of pleasure, it should obviously be tolerated at least some of the time.  Why should autistic people not be allowed to experience their own pleasures?  And if a stim actually helps the stimmer achieve his or her goals (in other words, if it helps them focus better)–as many autistics claim–it should obviously be tolerated all of the time.

Intervention may be warranted if stimming seriously detracts from quality of life, or if it is self-injurious.  However, even here, great caution is warranted.  Stimming often serves as an essential coping mechanism (a response to physical or mental distress).  Determining whether this is the case is no simple task, not only because the source of distress may not be obvious to neurotypicals, but also because autistic people (especially children) often have trouble identifying the source of their troubles, let alone communicating them to others.   An autistic child may not realize that the unending buzz of the fluorescent lights in her classroom is setting her nerves on edge, and so she cannot ask her teacher to turn them off.  She may not be aware that she dreads the bullying coming up during recess time, and is stimming to relieve anxiety.  But if it can be determined that physical or mental distress is the cause of the stim, then the next step should be to see whether that distress can be alleviated in some way.  ONLY if the cause of distress can be eliminated or greatly reduced should other activities such as schoolwork, hygiene or therapy be gently promoted.  And it may well be the case even then, that stimming will help the autistic individual focus better on what needs to be done.

But what if the stim is self-injurious—that is, what if the autistic person is desperately trying to smother pain they cannot control with a different kind of pain (head-banging, arm-biting, etc.) that they can control?  Extreme stims often (perhaps always) are a response to extreme distress that cannot be expressed in other ways.  A non-verbal teenager may not be able to tell his doctor that impacted wisdom teeth are causing him constant suffering, and that he is banging his head against the wall in an attempt to distract himself.  In that case, the only humane solution is to try gently to replace the harmful stim with a less destructive one—for example, head-banging and biting can often be replaced by deep pressure.[3]  Under no circumstances, however, should aversives—bitter tastes, sudden loud noises, disgusting smells,  or the application of new pain, such as electric shocks (and yes, these aversives are all still in use today, even though there is no scientific justification for them)—be used to eliminate self-injury.  There are few things crueler than punishing a child (or adult, for that matter) for stimming, if the stim is all that stands between them and despair.

 

 

 

 

[1] Cynthia Kim, “A Cognitive Defense of Stimming,” from her Musings of an Apsie blog: https://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/

[2] “The Lure of Stims,” from Ido Kedar’s Ido in Autismland blog:  http://idoinautismland.com/?p=117

[3] Some useful tips may be found on http://fuckyeahstimming.tumblr.com/tagged/Replacement-Stim-Requests-and-Suggestions

Joy and Autism 1

 

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

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

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

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

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

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

It is beautiful. It is perfect.

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

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

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

 

Faces

Beginning in the late 1960s, psychologist Paul Ekman began arguing that certain facial expressions were universal.  He and his colleagues developed cross-cultural experiments that showed how people in very different societies both used their own faces and “read” other people’s faces in the same way.  No matter what their background, people expressed six basic emotions (happiness, sadness, disgust, fear, surprise, and anger) using the same facial muscles; when they saw those muscles come into play on someone else’s face, they were generally able to interpret correctly the emotion the other person was feeling.[1]   Ekman and his colleagues developed and refined FACS, a system for systematically coding the movements of facial muscles, and then EMFACS, a system for interpreting spontaneous displays of emotion, using the movement of facial muscles.[2]  Both systems have been widely used in psychological research, as well as in other contexts. Other coding systems have been developed by other researchers, based on their own theories of emotion and its physical expression.[3]  One of these other systems was used at Cambridge University in the development of Mindreading™, a computer program intended to help children with autism learn to read neurotypical faces in the same way neurotypicals do.  Mindreading™ is the gold standard for this effort, but many other computer programs and phone apps have similar goals.[4]

There is a market for such products because one of the hallmarks of autism is difficulty in interpreting neurotypical people’s emotions.  While Ekman claimed that the ability to read the six basic emotions was universal, most autistic people cannot instinctively do this.  However, many autistic adults have learned– through study and practice–to interpret facial expressions quite well.  In fact, a fascinating series of mystery novels by British author Estelle Ryan is based on this learned ability.  Her autistic protagonist, Genevieve Lenard, has studied psychology (and presumably something like the EMFACS system) and has become so adept at reading the fine details of facial movement and body language that she is employed by an art insurance company to detect people lying in videotaped conversations.  Lenard is the fictional exception, however.  While many autistics can learn to detect the basic emotions in people’s faces, more complex emotions, such as embarrassment, generally elude them.[5]

Autistic struggles with facial recognition have attracted a great deal of attention from psychologists, neurologists and other researchers.  A huge body of scientific literature exists on this phenomenon and its neurological causes.  However, a closely related problem has received no scientific attention at all, despite its inherent interest.  And because this problem has not been studied, we do not know whether the failure of neurotypicals to read autistic faces is because autistic people express emotion using different facial muscles (in which case, Ekman’s claims for “universality” fall apart), or because neurotypicals have a deficit of some sort in the ability to read faces different from their own.

“Flat affect” (or the less severe “blunted” and “restricted affect”) is common among autistic people.  Their faces simply move less than those of neurotypicals; they may talk with stiff lips, without using other parts of the face—in other words, without facial expressions recognizable to neurotypicals.  The latter, however, have a genetic predisposition to expect particular facial expressions during certain kinds of social interactions.   This is true across cultures, at least for the basic emotions. [6]  Someone who does not produce the “right” expression at the right time, or whose face simply remains immobile, is experienced by neurotypicals as somehow “off”—as “weird” or downright “creepy.”  Consider, for example, this interaction between autistic blogger Cynthia Kim and a little boy visiting her house.  The two played together enjoyably in the morning, and the boy wanted to sit next to her at lunch.  But after lunch he told Kim: “you scare me.”  Kim pondered the child’s reaction for several months, and finally concluded that it was the lack of expression on her face that he had found so frightening:  “The technical term for this is flat affect, which means that a person displays reduced emotional expressiveness. It takes a five-year-old to put it in plain English though: you scare me.”[7]

Neurotypicals often see autistic people’s relative facial immobility as reflective of either a sinister masking of emotion, or more commonly as an “unnatural” lack of emotion.  The assumption that autistics don’t feel emotions (or even pain) remains, sadly, commonplace in today’s American society.  Interestingly, this assumption seems particularly common and unquestioned among younger neurotypicals.  A student Prezi presentation on Asperger’s syndrome from April 2016 states unequivocally that “Someone with Asperger’s feels no emotion and does not really care about a lot of anything.”[8]  “Imagine a world where you feel no emotion,” writes another student reviewing Mark Haddon’s The Curious Incident of the Dog in the Nighttime, a novel written from the perspective of an autistic teen (whose emotions are actually described in the novel!).[9]  But the stereotype of autistics as emotionless is also promoted by many adults—including some who really should know better.  Guillermo Sapiro is an engineering professor at Duke University, who recently worked with a professor of Child Psychology to develop a phone app designed to detect warning signs of autism in young children.  In talking to reporters about the app, Sapiro stated that, “Lack of emotion and social sharing are possible characteristics of childhood autism.”[10]  Presumably Sapiro had learned something about autism from his colleague in psychology, and he may have intended to say “lack of emotional expression.”  Nevertheless, his claim that autistic children “lack” emotion was widely repeated in the press, and it feeds the broader cultural stereotype of the emotionless autistic.

Not all autistics display “flat affect,” however.  Some of them “make faces”—that is, they produce facial expressions commonly considered inappropriate (except when produced by young children, playing with other children).  Autistic adults, as well as children, may purse their lips, scrunch up their noses, frown deeply, stick out their tongues, etc., often while making non-verbal noises of one kind or another.  Sometimes, they are doing this on purpose, to express anger or disgust, or (in the case of children) just to be annoying.  In other cases, however, such facial movements may be unplanned and even unnoticed by the person making them.  One little boy got into trouble for “making faces” at his “respite person.”  When his mother asked him why he was doing that, he replied, “Mommy, sometimes I just make faces for no reason. I didn’t know I was making faces at Miss X. I was just making them. Sometimes it just happens and I don’t know why it’s happening. I don’t make them for any reason.”[11]  “Inappropriate” faces are not necessarily intentional or expressive of any particular emotion.  Nevertheless, they often offend others, such as the respite person in this story.

Concerned about this possibility, neurotypical parents often try to make their autistic children at least aware of what they’re doing.  The mother just mentioned tried to explain gently to her son why people might “think he is trying to tell them something with just his face,” even though he didn’t mean to.  She would stop him whenever he moved his face in ways she considered potentially problematic, and ask him whether he was trying to tell her something with his face.  Self-awareness of “making faces” seems like a useful skill for a parent to teach his or her child.  Many other neurotypical parents, however, are more interested in policing their autistic children’s faces, striving to make them appear “normal.”  An online support group for parents of autistic children discussed how to train the kids (with cookies) not to produce the “ugly” faces, but only the ones the parents considered “cute,” or “appropriate.”[12]  Some scientists also want to “normalize” autistic faces:  a professor at Virginia Tech, for example, has developed a computer to teach children with autism not only how to recognize other people’s facial expressions, but also to “reciprocate” them.[13]  I will have more to say about the “normalization agenda” in a future post.

For the moment, however, I would simply note that neurotypicals appear to have just as much trouble reading autistic faces, as autistics do reading neurotypical faces.[14]  They may interpret the expressions on autistic faces incorrectly, as evidence of anger, lack of interest, disgust, mischievous intent, or even insanity.  And they may interpret “restricted,” “blunted” or “flat affect” as evidence that the autistic person feels no emotion at all.  Very little research has been done on this phenomenon, even though it is not only inherently interesting, but also has powerful practical implications for the well-being of autistics living in society.

 

 

[1] Paul Ekman, “Universals and Cultural Differences in Facial Expressions of Emotion,” Nebraska Symposium on Motivation, 19 (1971), pp. 207-82; Paul Ekman, Wallace Friesen, et al., “Universals and Cultural Differences in the Judgments of Facial Expressions of Emotion,” Journal of Personality and Social Psychology 53 (1987), 712-17.

[2] Paul Ekman and Erika Rosenberg, What the Face Reveals:  Basic and Applied Studies of Spontaneous Expression Using the Facial Action Coding System (FACS), 2nd ed. (Oxford, 2005), describes the development and use of these systems.

[3] Karsten Wolf, “Measuring Facial Expression of Emotion,” Dialogues in Clinical Neuroscience 17 (2015), 457-62.

[4] The program is distributed by Jessica Kingsley, a publisher who specializes in works on autism:  http://www.jkp.com/mindreading.

[5] Ofer Golan, Jacqueline Hill and Simon Baron-Cohen, “The Cambridge Mindreading (CAM) Face-Voice Battery: Testing Complex Emotion Recognition in Adults with and without Asperger Syndrome,” Journal of Autism and Developmental Disorders 36 (2006), 169-83; see also Ofer Golan,Yana Sinai-Gavrilov, and Simon Baron Cohen, “The Cambridge Mindreading Face-Voice Battery for Children (CAM-C): complex emotion recognition in children with and without autism spectrum conditions,” Molecular Autism 6 (2015), 22.

[6] Karen Schmitt and Jeffrey Cohn, “Human Facial Expressions as Adaptations:  Evolutionary Questions in Facial Expression Research,” American Journal of Physical Anthropology 44 (2001), Supplement:  Yearbook of Physical Anthropology, 3-24—see especially pg. 15 on the social difficulties of those who display flat affect.

[7] “You Scare Me,” on the Musings of an Aspie blog:

https://musingsofanaspie.com/?s=you+scare+me

[8] https://prezi.com/7nmzsborbhrl/aspergers-syndrome/

[9] http://www.notrequiredreading.com/books/curiousincident.php

[10] https://ssri.duke.edu/news/now-app-could-help-diagnose-autism-children

[11] http://www.modernmom.com/ee91278c-3b3d-11e3-be8a-bc764e04a41e.html

[12] http://www.mdjunction.com/forums/autism-discussions/general-support/1596632-does-any-ones-child-make-faces

[13] https://www.ece.vt.edu/news/ar16/making-faces.php

[14] Rebecca Brewer, Federica Biotti, et al., (“Can Neurotypical Individuals Read Autistic Facial Expressions?  Atypical Production of Emotional Facial Expression in Autism Spectrum Disorders,” accepted for publication in Autism Research ) have shown that autistic individuals produce such idiosyncratic facial expressions that neither neurotypicals nor other people with autism can read them reliably.