Category Archives: Emotion

Anger

Autism, Emotion, Human Rights, Neurodiversity, , , ,

Some on you may remember that as I’m editing my book for publication, parts of the material edited out is being posted here. This is from the first chapter, in a section on autistic experiences of emotion–an attempt to counter the “emotionless autistic” stereotype. So, here is “Anger . . .“

“What triggers your rage attacks?” someone asked on the Wrong Planet website.  The answers were many and varied.  “Severe bullying.” “When I felt powerless to control something.” “Cruelty.” “Feeling as if my integrity has been questioned.” “Being called ‘crazy’.” “People hurting my friends.” “When somebody tries to take my parking space” (This individual lives in New York City.) “Noise pollution.” “When people yell at me.” “Parents who abuse their children.” “Obnoxiously loud people. Obnoxiously arrogant people. Obnoxious people in general.” “Frustration from not being able to get a job.” “Lack of ability to communicate verbally.”[1]   

Their lives full of frustrations, disappointments, and infuriating experiences of cruelty and dismissal, people with autism are frequently angry.  And often this anger is very intense:

Emotions, we feel them more intensely than others and sometimes it’s too much handle. Especially emotions such as anger and frustration. In my case, I do have quite the temper, however, I JUST about manage to contain and internalise it. I fear the day I finally lose grasp and actually express anger.[2]

Young autistic children, in particular, have tremendous difficulty controlling their anger.  It tends to explode in the form of meltdowns.  The warning signs may be very subtle, hard for neurotypical adults to detect.  Then the meltdown appears to come out of nowhere, even when it has actually been building for some time.  Here an adult recalls her childhood emotions:

On the surface everything looked calm, right up to the point where the pressure became too much and I exploded with violent fury. I was never able to talk about it: the feelings were so intense that I couldn’t contain them and all I could vocalise were screams of anguished rage.  It was an anger born as much of frustration at my inability to identify and turn my emotions into words as it was of my distress and discomfort.[3]

Most children on the autism spectrum do gradually learn to contain their anger, in a process that may go unnoticed by neurotypical adults.  Here an eleven-year-old autistic student tries to control his meltdown after being severely bullied all day at school:

He stepped out [of the school] to see his papers being blown away, the girl who was being suspended for hitting him all day having apparently dumped out his things. And that’s when the meltdown occurred. He began picking up desks and throwing them. Keep in mind that he’s eleven. All of the desks and chairs ended up in a pile in the middle of the room. It was a slow-motion rage — oddly controlled, as he went out of his way to make sure he never threw a chair or desk in such a way that I would be hit by one.[4]

This angry child “went out of his way” to make sure that no one would be hurt by his actions.  Fortunately, the writer, an autistic teacher, noticed this.  A neurotypical teacher might have just focused on his throwing furniture and punished accordingly.

By the time autistic children grow into adults, they are usually able to avoid meltdowns and aggression, even when they are angry.  Of course, some adult autistics, just like some neurotypicals, never master this skill and continue to have short fuses and violent outbursts throughout their lives.  But the majority will at most allow themselves to yell at someone, or they will have a quiet “shutdown” (which usually involves seeking isolation and then sobbing).  

The real problem is that, even when they control their behavior, the anger does not go away.  Many autistics experience anger on a regular basis.  They lead very difficult and frustrating lives, and, though they may not act out aggressively, they are still prone to “angry rumination,” constantly dwelling on the things that have made them angry, going over and over events in their minds.  Autistics are prone to perseverating on particular thoughts anyway, and upsetting events can easily preoccupy them for long periods of time.  In the general population, such “angry rumination” is associated with a variety of negative psychological outcomes.  While little research has been done on the phenomenon in autistic adults, two studies have shown an association between their angry rumination and problems with anxiety and depression.[5]   More research on ways to block rumination in autistics and to lessen stress in autistic lives seems long overdue.

[1] “What Triggers Your Rage Attacks” on the Wrong Planet website, December, 2017:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=357406&start=0.

[2] DestinedToBeAPotato, in the “do you have trouble controlling ur anger?” discussion on the Wrong Planet website, February 15, 2016:  https://wrongplanet.net/forums/viewtopic.php?t=306240.

[3] Alexandra Forshaw, “The Arrogance of Sanity,” on her blog My Autistic Dance, October 28, 2018:  https://myautisticdance.blog/2018/10/28/the-arrogance-of-sanity/.

[4] Troy Camplin, “Autism in the Schools — A Personal Narrative,” on his An Intense World blog, November 21, 2017:  https://anintenseworld.com/2017/11/21/autism-in-the-schools-a-personal-narrative/.

[5] Lake-Hui Quek, et al., “Co-Occurring Anger in Young People With Asperger’s Syndrome,” Journal of Clinical Psychology 68:10 (October, 2012), 1142-48; Shivani Patel, “Association between anger rumination and autism symptom severity, depression symptoms, aggression, and general dysregulation in adolescents with autism spectrum disorder,” Autism 21:2 (February, 2017), 181-89.

The Impact of Bullying: Internalizing Disorders

Autism Acceptance Month, Bullying, Education, Emotion, , , , , , ,

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

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

The Impact of Bullying Internalized

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“the principal emotion experienced by autistic people is fear”

Anxiety, Emotion, Stimming, Uncategorized, ,

 

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?

Anxiety, Emotion, Joy, Stimming, Uncategorized, , ,

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