Tag Archives: Anxiety

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 Normalization Agenda, Part 2

Please note:  this is the second part of a talk I will be giving this Friday to a clinical psychology program.  I would be very grateful for comments, corrections, etc.

(Continuing from Part 1)

From here on, there will be a lot of quotations from the writings of these autistic adults, because I want them to be able to speak for themselves about their situation.  Perhaps I should mention that their language often draws on several pre-existing discourses, including those of the civil rights, LGBT rights and broader disability rights movements.  As Cynthia Kim, author of a well-known blog called Musings of an Aspie, notes:

“The concept of passing originates in racial identity. In societies where being classified as a certain racial group leads to discrimination (or worse), some members of that group may present as members of a different racial group. For example, some people with African ancestry passed as Arab or Native American to avoid segregation in the US. Some people of Jewish ancestry passed as Aryan in Nazi Germany to save their lives.  Today, people with hidden disabilities are said to pass when they present in a way that conceals visible signs of their disability. Many autistic people make a conscious effort to pass. Not stimming visibly is a way of passing. Giving the “right” answers to the social communication questions on a job screening test is a way of passing. Going out for a beer with workmates when you’d rather go home and curl up in front of the TV is a way of passing.”

In the writings of autistic adults, both activists and non-activists, “passing” is shorthand for “still autistic, but able to appear “indistinguishable” from neurotypical.  Autistics also often describe “being in the closet,” and sometimes “coming out” to a few close friends (or more rarely, to an employer).[1]  In other words, they use the language of other groups who have historically suffered from discrimination, to distinguish what they see as their “real” identity from the learned identity they must assume in order to survive in the world.

These adults clearly recognize how essential the skill of “passing” is to success in life.  Passing opens the doors to education, employment, housing, independence.  Judy Endow, an educational consultant and well-known speaker on autism, writes a blog called Aspects of Autism Translated.  She is an older woman, who did not have early intervention available to her when she was young—instead her family committed her to a psychiatric institution.  Judy—who is very, very bright—taught herself social skills to escape institutionalization, to escape from poverty and homelessness in her early adulthood, to learn to raise her own autistic kids, to obtain college and graduate degrees, and finally to establish a satisfying career.  She learned to “pass” as normal because she had to, and she points out in her blog the many ways in which passing has been useful to her and to other autistics.  But like most other autistic writers—and unlike most scientists and professionals–she also recognizes that passing has a high cost for those whose neurology remains autistic:  “I know in the field of autism we have made it our goal to get autistics to look neurotypical . . . Many people congratulate themselves when it happens. I am here to tell you . . .  that this may NOT wind up to be a good thing for autistic people.”[2]

But why not?  What’s wrong with learning to act “normal”?   Well, to begin with, when very young children (pre-schoolers, children as young as 2 or 3) are taught–through 40 hours a week of intervention, in the case of classical ABA, or perhaps 20 hours a week in many contemporary interventions—to repress their instincts and act in socially acceptable ways, they simultaneously learn that their natural instincts and behaviors are wrong.  Why else would adults spend so much time extinguishing those behaviors?   “. . . intensive ABA therapy, “writes Sparrow Rose Jones, “will . . . teach a child that there is something fundamentally wrong and unacceptable about who they are. Not only is that child trained to look normal, they are trained to hate who they are inside. They are trained to hate who they are and hide who they are. . . .  All those years of ABA therapy will have taught them that they are fundamentally wrong and broken.”[3]

This is the unspoken message of the intervention itself, which the autistic child will learn alongside facial recognition and social skills, unless the therapist and the parents involved take great care to counteract it.  Sadly, however, far too many parents, desperate for their child to become “normal,” actually reinforce it.  Here is Larkin Taylor-Parker, now a young adult, describing  her fairly recent experiences:  “Learning to pass took me years of practice with a special method: every time my family went out in public when I was a child, the ride home was a lecture on my failings. I was upbraided for gait, demeanor, eye contact, manner and content of speech. The reward for perfect success was a moment of rare parental affection.”[4]  Similarly, Amethyst Schaber, who produces the fantastic Ask an Autistic videos on Youtube, writes:  “Imagine being told every day of your life that who you are is bad, shameful, and broken. Imagine that the people who love you the most and who are supposed to support you, your family, insist that you have to pretend to be someone else every day for the rest of your life.”[5]

Even after early intervention comes to an end, the view that autism is a shameful defect is constantly reinforced by public messages.  The infamous Autism Speaks campaign from 2009, called “I am Autism,” reminded older autistics that they were to blame for publicly humiliating their relatives, and bankrupting their families—not to mention breaking up their parents’ marriages.  The video is no longer on Autism Speaks’ website, but the messages that well-known organization, let alone some of the other, even crazier organzations, purvey have not improved.  Their publicity campaigns and public events all focus on “preventing” and “curing” autism—that is, at making autistic people disappear from our society—rather than on helping people with autism live successful and happy lives. As Jocelyn Eastman, who writes the Art of Autism blog, puts it:  “We are portrayed as broken and as needing to be cured. We have had people tell us to our faces that they would rather have a child die of a preventable disease than to have their child become autistic. We have had people tell us that they can’t wait for prenatal testing so that people like us can be aborted, and that we won’t have to be burdens anymore. All the while, we are expected to accept that others feelings about autistic people are acceptable and understandable. . .”[6]  As a result, even adults who have learned to behave normally often suffer from internalized shame, simply for being autistic.

That shame is accompanied by constant anxiety about being exposed as autistic.  And such anxiety sets in at a very early age:  “Being aware of the dissimilarities between me and my peers didn’t make things any easier,” writes Nicole Wildhood, in an article written for The Atlantic magazine.  “ . . .  the awareness made me hyper-vigilant about appearing ‘normal,’ and so all the more anxious. By age 5, I had begun a high-level construction project, creating a new outward-facing version of myself to fit with the social norms I perceived. . . .”[7]   Anxiety is a very significant problem for people with autism, for a variety of reasons.  But social anxiety, resulting from pressure to “maintain the act,” is a major stressor for adults.  This is what Joseph Galbraith has to say about this anxiety:  “For the majority of my life, I was so concerned with, and so preoccupied with passing, so terrified of saying or doing the ‘wrong thing’ and being ‘discovered’ as neuro-divergent that this neuroses took up almost all of my mental energy.  The majority of the time was spent second guessing everything I said, and everything that I did.  My entire mental energy was consumed with ‘putting up a false image’ one that would be accepted by those around me.”[8]

And this brings me to the most important “cost” autistic people pay for passing as “normal”:  simple exhaustion—exhaustion to the point of incapacity, of complete burnout.  In the absence of a “normal” neurology, it actually takes a tremendous amount of mental and physical energy to maintain the façade of normalcy. And the energy taken up by that process is not available for work, for play, even for self-care.  Here is a particularly rich discussion of this issue, written by Kassiane Sibley, in a piece that has often been cross-posted and referenced by members of the autism community, called “The Tyranny of Indistinguishability.”  It’s a long quote, but I want to read the whole thing because the language is so evocative.  I should explain that it begins with a word often used by the online autistic community:  “allistic”—meaning someone who is not “autistic.  So here is what Kassiane has to say:

“The Allistic Emulator software we run on our Autistic operating system needs constant attention. Have you ever run an emulator program? Like all of them, mine is slow, it is buggy, and it takes up processor power that’d be better off being devoted to another task. And it constantly needs upgrading to perform anywhere close to spec. . . .  When I gave a shit about my safety & about the people who taught me this–which was everyone in my life in my youth, as that’s how these things tend to work–I was constantly upgrading my emulator. Constantly relearned more in depth performances. It made me tired, anxious, cranky, and it failed frequently. The failures were distinguishable in the worst kind of way.  Failures were marked in tears. In full on meltdowns. In self loathing and self injury. Inability to do anything–eat, sleep, move–because of exhaustion and inertia. Did I mention self loathing? Severe anxiety. Self isolation (if I do it first they can’t!). Intimately detailed, ritualized recitations of all the ways I failed at being a human being. Because keeping up the act of humanity is what is required to be thought of as human. How very Lovaas.  So much energy was put into being a real person that I didn’t have the cognitive capacity to do as well as I could at any of a number of things. Between the day to day facade and flat denial of my visual support needs, all my learning bandwidth was diverted into running my shitty, self defeating emulator”.[9]

In childhood, all of Kassiane’s “learning bandwidth” was taken up by the effort to act “normal,” so she didn’t have the cognitive capacity to engage as well as she could in other activities.  But this effort does not, cannot stop with childhood.  The “emulator software” requires constant maintenance and upgrading throughout adult life, sucking away energy that might be devoted to other, more productive activities.

Adult autistics trying to pass have to focus intensely on all kinds of things most of us never even consider.[10]  If they are lucky enough to have a paying job, for example, they need to get their work done, while also keeping the “allistic emulator” going without respite.  They have to work while dealing with the demands of their autistic neurology, without ever revealing that they are autistic—because “coming out” as autistic is likely to cost them their job.  Simply getting to work can be overwhelming:  riding a bus, for example, requires not only dealing with unpleasant sounds and smells, but also keeping track of somewhat unpredictable multi-step procedures—a struggle for people with executive functioning issues.  You have to find the right bus stop, get on the right bus, pay the fare, move through the crowd on the bus to look for an available seat, watch for the right stop, move through the crowd again to get off, get from the bus stop to the work site, etc.  Once you get there, there will be multiple sensory challenges.  Flashing lights on computer screens and overly-bright fluorescent lights (which also, by the way, make a low level buzzing noise many autistics find intolerable) create headaches and dizziness.  The constant “background” noise as people in the room talk on the telephone or to each other, is never actually in the background for an autistic person, and it makes it difficult to distinguish what your boss is trying to say to you.  Intense smells in the bathroom and lunch room make you feel sick to your stomach.  You can never ignore the uncomfortable tightness or scratchiness of work clothes.  Just maintaining the correct physical appearance can be a significant problem.  Scott Monje, who writes the Shaping Clay blog, talks about how he has to “artificially hold” his face, for hours, to hide the fact that his eyes are not symmetrical and that his mouth naturally twists so that one side is open.[11]

Employment also involves a multitude of supposedly simple social interactions–involving eye contact, small talk, and constant snap judgments about appropriate responses, all of which can provoke intense anxiety.  “I am exhausted at the end of a work day,” writes Judy Endow, “because it takes a great deal of effort for me to continually stifle my reactions to sounds, sights, smells and movements that others do not typically notice. I have to particularly pay attention to conventional social mannerisms such as remembering to look at people during conversation, track which words are “work words” and which words are “social fluff words” and respond accordingly. I work at this because I like to be able to fit in and in many respects my continued employment depends on it.”[12]

Autistics trying to “pass” as neurotypical  at work cannot use their best coping mechanisms—they can’t use stimming to release tension, or have a complete meltdown on the bus–because this will break through the neurotypical disguise and reveal the autistic beneath.  (The meltdown on the bus may also lead to a police call and involuntary hospitalization.)  So these adults suck it up and keep trying to pass.  But, as one autistic blogger puts it:  “What [the people around me] don’t see is my suffering. They don’t know that sometimes I am panicking on the inside or going through sensory overload right in front of them. How could they? . . .  I learned to hide these things years ago. Nobody sees me freaking out, knows when I am having stomach issues, or my head is pounding from the florescent lighting of the office I work in two to three days a week.  I don’t complain. I smile, push forward, pull up my big girl panties and do what I have to do to make sure that I am able to provide the best possible life for myself.”[13]  The coping comes at home, like this:  “For every hour that we manage to pass, we spend two or three or five recovering. We pull off a great passing act at work and pay for it by needing the whole weekend to recharge. We juggle a full class load like our typical peers and end up overwhelmed to the point of illness by midterms.”[14]  Or like this “Every day when I came home, I would just fall asleep on the couch or on the floor. I didn’t write. I didn’t play video games, even. I just came home and… stopped…”[15]

The harder these autistic adults work at passing, the more exhausted they get; and the more exhausted they get, the weaker their ability to keep up the act.  Scott Monje, whom I mentioned before, is a successful writer and a university lecturer.  But he has trouble keeping his face looking “normal,” and he also has trouble continuing to speak “normally,” as fatigue sets in:

“I can talk for extended periods, but the more tired I get, the more my speech impediment slips out. It starts as a stutter, then I go tonally flat, and eventually I lose control over my enunciation and start to sound like the stereotypical autistic. Usually I also get frustrated and have a hard time keeping myself from shouting when this happens, because I stop being able to say the words I intend to say, and instead I insert similar-sounding but incorrect words, like saying “speak” when I mean “steep”. When it gets really bad, I will be able to see the word in my mind’s eye, as if I was silently reading, but I will not know how to say it out loud.” [16]

In other words, this intelligent, accomplished man who is sometimes able to be “indistinguishable from his peers,” will revert to his natural, non-verbal autistic state when he becomes too tired to keep up the act any more.

Which brings me to the final cost of “passing”: “autistic burnout.”  If you search the PsychInfo database for “autistic burnout,” you will find quite a number of articles concerning burnout as a problem for parents of autistic kids, for special education teachers, even for ABA therapists.  Nothing at all about burnout among autistic adults—except for a single short piece, by an engineer, discussing ways to make the engineering workplace, specifically, more accommodating for autistic engineers.  Psychologists have apparently not considered the possibility that autistic adults might burn out, but it is a very real phenomenon, with serious consequences.  Within the autistic community, “burnout” refers to what happens when maintaining the act of being “normal” simply becomes too exhausting, and someone is therefore forced to abandon work or school or whatever else they were engaged in—sometimes for a few weeks or months, sometimes forever.

Some people refer to burnout as “autistic regression”—because when an autistic person burns out, he or she generally loses the skills learned in those early childhood interventions—the ability to act “indistinguishable” from peers–and reverts to his or her original autistic self.  One person describes what happened when her life became too stressful this way:  “There goes my job and my relationship. I had to move back in with a friend. Now, a year and a half later, I have no other friends aside from the two I’ve limited to online-only contact, barely speak to my family, and panic at the thought of leaving my house. I stim openly in public, wear headphones wherever I go, don’t force myself to do anything that is too overwhelmingly stressful, and… overall just feel ‘more autistic’ than ever.”[17]

Amethyst Schaber, who has experienced burnout and recovery herself, defines autistic burnout as “something that happens to autistic people who have been in a sustained state of anxiety or exhaustion, or to autistic people who have been passing as non-autistic without enough time to be themselves and recover. It is awful. It’s like a mental breakdown, with skill loss and what professionals call ‘regression’ thrown in there too. Many autistics in burnout are depressed and many experience suicidal ideation.”[18]  Or, to put it another way: when autistics “finally crumble from years of hiding their sensory pain and years of performing their social scripts and blaming themselves every time a script doesn’t carry them successfully through a social situation, they will be angry at themselves and blame themselves for their nervous breakdown and autistic burn-out.”[19]  I want you to notice the references here to “anger” directed inward, to depression and suicidal ideation—because these are the most dangerous of burnout’s consequences.

Earlier this year the British Journal of Psychiatry published a Swedish study that looked at the life expectancy of more than 27,000 people with autism.  It contains a lot of troubling food for thought.  The overall finding was that autistic life expectancy is, on average, 16 years less than that of the general population.  The majority of autistics I mentioned earlier—the majority who CANNOT learn to be “indistinguishable” from their peers—account for most of this difference.  The people in this group tend to have co-morbid physical conditions–respiratory problems, heart disease, diabetes, and especially epilepsy—that kill them at an early age.  This group is also more prone to fatal accidents than the people we have been looking at, the ones who have the capacity to act “normally.”  One finding, however, was particularly disturbing.  It is already well known that somewhere between 30 and 66% of all those on the autism spectrum have considered suicide.  What the Swedish study showed is that among those with “milder” forms of autism—that is, among the kind of people I have been talking about today, the ones who can sometimes “pass” as neurotypical—the rate of completed suicide is NINE times higher than it is in the general population.[20]

These folks are killing themselves at appalling rates—and there are things we could be doing about that.  Better diagnosis (especially for girls and women, whose autism is underdiagnosed), better treatments (anti-depressants often have peculiar effects on those with unusual neurologies), better access to health services, in settings that don’t create sensory or social stress.  Greater efforts to curb bullying of autistic children in schools would help, as would greater efforts to get employers to hire, accommodate and promote autistic adults.  Most importantly, however, it is time we as a society stopped telling autistic people, young and old, that they are only worthwhile as long as they can appear normal.  Because as long as their neurology remains autistic, this is simply setting them up for exhaustion, failure, and possible suicide.

Dani Alexis, the brilliant young woman who writes the Autistic Academic blog, was punished as a child for any behavior that varied from the norm.  She quickly absorbed the fact that her needs were not important to the adults around her, and was, as a result, suicidal for a very long time.  I think I will let her have the last word on what I’ve been calling the “normalization agenda.”  This is what she says:

“I’m one of the handful of autistic people who, for a few brief moments, achieved indistinguishability from peers.  What you are seeing now is the result of thirty years of constant work toward that goal.

It was not worth it.”[21]

 

 

 

 

[1] See Lydia Brown, “The Politics of Coming Out,” on the Autistic Hoya blog:

http://www.autistichoya.com/2012/10/the-politics-of-coming-out.html.

[2] Judy Endow, “Autistic Burnout,” on the Aspects of Autism Translated blog:

http://www.judyendow.com/advocacy/autistic-burnout/.

[3]  Sparrow Rose Jones, “ABA,” from the Unstrange Mind blog:

https://unstrangemind.wordpress.com/2014/10/07/aba/.

[4] Larkin Taylor-Parker, “Passing:  How to Play Normal,” from the Think Inclusive blog:

http://www.thinkinclusive.us/passing-how-to-play-normal/.

[5] Amethyst Schaber, Response to a question form lesmis5, on the Neurowonderful blog:

http://neurowonderful.tumblr.com/post/104511295106/lesmis5-so-my-sister-just-threw-the-biggest.

[6] Jocelyn Eastman, “Looking Autistic:  The Positives and Pitfalls of Passing,” from the Art of Autism blog:

http://the-art-of-autism.com/looking-autistic-the-positives-and-pitfalls-of-passing/.

[7] Nicole Wildhood, “What Does It Mean to ‘Look Autistic’?” The Atlantic March 24, 2016:

http://www.theatlantic.com/health/archive/2016/03/what-does-it-mean-to-look-autistic/475287/.

[8] Joseph Galbraith, “Passing in the Neurotypical World,” from the A Boy with a Whole in His Head blog:

http://www.aboywithawholeinhishead.info/2016/03/passing-in-neurotypical-world.html.

[9] “The Tyranny of Indistinguishability:  Performance,” on the Radical Neurodivergence Speaking blog:

http://timetolisten.blogspot.com/2013/11/the-tyranny-of-indistinguishability.html.

[10] FIX REF  Kate, “Passing,” on The Thinking Person’s Guide to Autism blog.

[11] Michael Scott Monje, “Not That Autistic,” originally published on his blog, Shaping Clay (http://www.mmonjejr.com/2013/01/not-that-autistic.html), but updated (among other things, to add the information about his facial muscles) for publication in The Real Experts:  Readings for Parents of Autistic Children, ed. Michelle Sutton (Autonomous Press, 2015).

[12] Judy Endow, “Losing an Autism Diagnosis,” on the Aspects of Autism Translated blog:

http://www.judyendow.com/autistic-behavior/losing-an-autism-diagnosis/.

[13] “Anna,” “Off the Spectrum:  How Autistic Are You?” from the Anonymously Autistic blog:

https://anonymouslyautistic.net/2016/08/09/off-the-spectrum-how-autistic-are-you/.

[14] Kassiane Sibley, “The Tyranny of Indistinguishability:  Performance,” on the Radical Neurodivergence Speaking blog:

http://timetolisten.blogspot.com/2013/11/the-tyranny-of-indistinguishability.html.

[15] Michael Scott Monje. “In Passing:  On Not Passing, Failing to Pass, and Social Skills,” on the Shaping Clay blog:

http://www.mmonjejr.com/2012/07/in-passing-on-not-passing-failing-to.html.

[16] Michael Scott Monje, “Not That Autistic,” originally published on his blog, Shaping Clay (http://www.mmonjejr.com/2013/01/not-that-autistic.html), but updated (among other things, to add the information about his facial muscles) for publication in The Real Experts:  Readings for Parents of Autistic Children, ed. Michelle Sutton (Autonomous Press, 2015).

[17] “AinsleyHarte”  http://wrongplanet.net/forums/viewtopic.php?f=3&t=153352&sid=fd8394a8ef412b3562390350ea16c5fb&start=45

[18]  Amethyst Schaber, response to question on the Neurowonderful Tumblr site:

http://neurowonderful.tumblr.com/post/104511295106/lesmis5-so-my-sister-just-threw-the-biggest.

[19] Sparrow Rose Jones, “ABA,” from the Unstrange Mind blog:

https://unstrangemind.wordpress.com/2014/10/07/aba/.

[20] Tatja Hirvikoski, Ellenor Mittendorfer-Rutz, Marcus Boman, Henrik Larsson,

Paul Lichtenstein and Sven Bölte, “Premature Mortality in Autism Spectrum Disorder,” British Journal of Psychiatry 208: 3 (2016), 232-38.  See also the report by the British organization Autistica, “Personal Tragedies, Public Crisis,” p. 5:

https://www.autistica.org.uk/wp-content/uploads/2016/03/Personal-tragedies-public-crisis.pdf.

[21] Dani Alexis, “On Functioning and ‘Functioning’,” on the Autistic Academic blog:

https://autisticacademic.com/tag/indistinguishable-from-peers/.