Autistic Poverty, Part 2

Autism, Housing, Human Rights, Poverty, , ,

Throughout the U.S., at least half of autistic adults reside in a family member’s home—even when they would prefer to live on their own.[1]  Sometimes they just don’t have the skills to live independently, but more often they can’t afford to, because they don’t earn enough.   If they come from a financially stable, functional family this may be frustrating, but it is still the best solution.  Unfortunately, though, some impoverished families become even worse off as their autistic child reaches adulthood.  While most autistic adults living with family members do receive SSI, some households receive SSI benefits for their autistic child, but then lose the benefits after the child became an adult.  So there may actually be less money available to pay for an adult child living in the home than there was for the young child living there.[2]  This creates a very stressful situation, both for the family and for the autistic adult.[3]

An even more troubling issue is that of familial abuse.  Sadly, many autistic adults are trapped by poverty into abusive, even fatal situations at home.[4]  The mother of one Wisconsin 21-year old locked him in the basement with only a bucket for a toilet.[5]  In Louisiana, an autistic woman whose parents were dead was “taken in” by her cousins.  They stole her SSI checks, kept her in a cage, beat her, shot her with a B.B. gun, and forced her to consume her dead mother’s ashes, among other horrendous acts.[6]  Some of this is simple sadism, but the cause of abuse can also be a refusal to accept the reality of autism.  One young woman wrote:

my parents do not want a child like me. They want an outgoing, socially normal, confident child, which I am not, and never have been. However, they pretend to themselves that I am all the things they want me to be, and when I am not they berate and punish me for being lazy, selfish, arrogant, heartless, acting stupid etc. They pretend that the only reason I am not what they want me to be is because I am badly behaved, so they punish me and yell at me when I am myself.[7]

Living with family can be a good solution for some adults, but it also can be a tragic one.

[1] The Autism Housing Network estimates that 87% of autistic adults live with their parents, but only 22% actually want to live with them:  “Statistics to Share,” on the Autism Housing Network website:  https://www.autismhousingnetwork.org/education/statistics-to-share/.

[2] Manasi Deshpande, “Does Welfare Inhibit Success?  The Long-Term Effects of Removing Low-Income Youth from the Disability Rolls,” American Economic Review 106:11 (2016), 3300-3330.

[3] One quarter of families with adult autistics living with them had a household income of less than $25,000/year: Anne Roux, et al., National Autism Indicators Report: Family Perspectives on Services and Supports (Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, May 2021), p. 27.

[4] In general, the disabled are much more likely to experience violence than those without disabilities, and that violence is more likely to be perpetrated by relatives:  Erika Harrell, “Crime Against Persons with Disabilities, 2009-2015 – Statistical Tables,” U.S. Department of Justice Bureau of Justice Statistics Report, July, 2017:  https://bjs.ojp.gov/content/pub/pdf/capd0915st.pdf. 

[5] Kristen Zambo, “Racine Woman Accused of Keeping Autistic Son Locked in Basement,” Journal Times (Racine, Wisconsin), July 10, 2013:  https://journaltimes.com/racine-woman-accused-of-keeping-autistic-son-locked-in-basement/article_2e9f5005-8950-5104-b0d1-13fa6e466066.html.

[6] Alisha Brown, “Trapped in Hell’: Family Accused of Keeping Autistic Woman in Cage, Making Her Eat Mom’s Ashes,” The Daily Beast July 27, 2018:  https://www.thedailybeast.com/trapped-in-hell-family-accused-of-keeping-autistic-woman-in-cage-making-her-eat-moms-ashes; Caroline Grueskin, “Alleged ringleaders plead guilty in abuse of autistic woman; was kept in cage, fed mother’s ashes,” The Advocate (Baton Rouge, Louisiana), May 20, 2019:  https://www.theadvocate.com/baton_rouge/news/communities/livingston_tangipahoa/article_9fabde80-7b35-11e9-9fc5-236d748f322e.html;  “Louisiana couple sentenced for abusing caged autistic woman,” KALB television, October 31, 2019:  https://www.kalb.com/content/news/Louisiana-couple-sentenced-for-abusing-caged-autistic-woman-564189941.html.

[7] FandomConnection, in the “Emotional Abuse?” discussion on the Wrong Planet website, July 30, 2017:  https://wrongplanet.net/forums/viewtopic.php?t=351924.

I Just Can’t Stand It

Autism, Bullying, Graduate School, ,

So beloved daughter is now in a Masters program in Social Work. She wants to work with kids–and she’ll be great at it. She already has a lot of experience.

But graduate school has turned out to be such a disaster. Not that she’s doing badly in classes–she’s actually the top student in her cohort. No, it’s the old problem, that I really thought would be gone by now. Bullying.

Yes, you read that right. Graduate students training to be future social workers (helping vulnerable people, right?) are being horrible to her and some other students. They made fun of another student’s clothes. They blocked the one gay guy in the program from taking a seat. But they really, REALLY love tormenting my daughter, mostly because she’s a good student (and maybe because she’s autistic and doesn’t play their games).

She prepares for class in advance. And when she’s in class she asks questions. They don’t like that. They especially don’t like the questions–and guess why? Because if nobody asks questions, then they get out of class early.

That’s their goal–getting out of class early. The future social workers of America.

And so at the start of the semester yesterday she asked a question and most of the other people in the room laughed at her. It startled the professor. And it made her just that much more depressed.

Autistic Poverty, Part 1

Autism, Employment, Neurodiversity, Poverty, , , ,

As noted in a previous post, I am trying to make my book manuscript shorter (and therefore, readable). So I’m putting some of the material here on this blog. This is the first of several posts on autistic poverty and its impact on where people live.

Autism traits that cause employment issues mean we may end up with less earning power, less earning power means we wind up in places that trigger exactly those issues caused by the autism, which in turn makes us more stressed and even more susceptible to our own challenges and it’s harder to cope with them successfully, which leads to employement issues, which leads to less earning power, which leads to living in the sh***y place . . .[1]

Over the past few years, the financial situation for autistic adults has actually improved slightly.  A few companies are realizing the benefits of “hiring autistic” and are changing their practices accordingly.  It looks as though segregated workshops paying sub-minimum wages may soon be phased out.  Those who can find a place in the integrated workforce are earning more and can live a somewhat better life.  But this minor improvement starts from an abysmal base.  It is still a fact that only about 14% of autistic adults hold regular jobs, and many of these work fewer hours and at lower wages than they would like.  Financial independence, the foundation for personal independence as it is understood in our society, remains elusive even for those who work.  For the unemployed majority of autistic adults, the situation is even worse.  Unless their families are well-off and choose to support them, those without jobs end up living in poverty—often desperate, life-threatening poverty.

Consider the housing situation.  Solid data is hard to find because so many adult autistics fly under the radar.  But a 2017 report from the Drexel University Autism Center found that about 10% of autistic adults lived independently, 49% lived with parents or other relatives, 27% were in group homes, another 8% were in institutions, and the last 5% were in “other” living situations.[2]  These figures resemble those found in other studies, so we can consider them as relatively reliable. [3]

Many autistic people aspire to living somewhere on their own.  Perhaps this is because they wish to maintain their own standards of cleanliness.[4]  Or they may not feel safe living with others because of earlier experiences:

. . . my mindset from an early age is that there was no other way of living but independently, because that represented safety to me, and I made my own way because my trust in people was very much absent as a result of experience.[5]

Others may prefer to have a space where they don’t have to interact with other people:

I have been on my own since I was a teen. I will be honest not having supports resulted in a lot of abuse. With that said, for the last few years or so I have been on my own again (without a roommate or anything), and it is a wonderful experience. I pay all my bills, have my own car, make my own schedule. My parents are both dead, and I have no family for thousands of miles. I am alone and have been for a while now besides my two kids. More and more I appreciate the aloneness and look forward to being an empty nester one day.[6]

Still others see living on their own as a meaningful symbol of independence.

We should bear in mind, though, that some autistics live alone because their families have rejected them:

I was threatened with abandonment even before school age, so I got ready ASAP. I was almost 18 before I got kicked out. I’ve been homeless a few times, but never missed any meals.[7]

I have been on and off homeless since my mom kicked me out when I turned 18 . . . [8]

So “living independently” is not always a matter of choice.

[1] BirdInFlight, in the “Poverty is Harder with Aspergers” discussion on the Wrong Planet website, October 13, 2017:  https://wrongplanet.net/forums/viewtopic.php?t=355217.

[2] Anne Roux, et al., National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood (Philadelphia, PA:  Drexel University Autism Institute, 2017).

[3] Cindy Skinner, et al., “Autistic Disorder: A 20 Year Chronicle,” Journal of Autism and Developmental Disorders 51 (2021), 677-84.

[4] dragonfire42, in the “What’s on your mind right now?” discussion on the AutismForums website, July 29, 2020:  https://www.autismforums.com/threads/whats-on-your-mind-right-now.28399/page-20#post-706937.

[5] B19, in the “Anybody Live Independently?” discussion on the Wrong Planet website, October 26, 2017:  https://wrongplanet.net/forums/viewtopic.php?t=355663.

[6] browneyedgirlslowingdown, in the “Can Autistic Adults Live Independently?” discussion on the Wrong Planet website, June 10, 2021:  https://wrongplanet.net/forums/viewtopic.php?f=23&t=397524&start=0.

[7] Dear_one, in the “Anybody Live Independently?” discussion on the Wrong Planet website, October 28, 2017:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=355663&start=32.

[8] 100skerls, in the “Near the end of my efforts, about to just give up” discussion on the AutismForums website, June 11, 2019:  https://www.autismforums.com/threads/near-the-end-of-my-efforts-about-to-just-give-up.30202/page-2#post-621643.

Hi. I still exist

Autism, Human Rights, Myths about Autism, Neurodiversity, ,

Been a rough few months. Personal injuries. Family crises. The world in flames. You know the drill . . .

Anyway, just to let you know that I’ve started on the final chapter of my book (yay!!) So it should be out in 1923. Look for What Today Withholds: Autism and Human Rights in the United States. Available soon (well, in a few months) on Amazon.

“Autistics Aren’t Welcome Here”: The Bullying of Autistic Students in America’s Schools

Autism, Bullying, Education, Human Rights, Suicide, , ,

His final social media post said he was “tired of being bullied.”  According to his mother, he had been hounded at school for years—at one point coming home with a broken nose and a concussion.  The school administration knew that other students were preying on him but took no action.  At one point, he even visited the school nurse and told her he wanted to kill himself, but the school never followed up. 

And then, suddenly, a ray of hope.  The district STEM school admitted him to their program.  This meant, his mother said, that he would finally be able to “leave a school where he was tormented by students and neglected or ostracized by the administration.”  The STEM academy was aware that he was autistic but was willing to take him anyway.  But then it turned out that the STEM school didn’t offer a “base class that was required for the boy’s autism.”  And so the school district rescinded their permission for him to transfer, leaving the child “devastated.”  So he did kill himself.  He was eleven years old.[1]

Suicide attempts and successful suicides are far more common among autistic than more neurologically typical children.[2]  Bullies, especially cyberbullies, encourage suicide with messages like “you should die” and “dig a hole and bury yourself.”[3]  But autistic children don’t need such messages to realize that their lives in school are unbearable, or to 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.”[4] 

The fact is, if you are a school bully looking for an easy target, the nearest kid with autism fits your needs perfectly. Generally naïve about social customs and interactions, such children are easily manipulated or tricked into dangerous situations.  Because of their unusual behaviors (and sometimes by personal preference), they tend to be socially isolated, lacking any protective support network of peers. They may also be mistrusted or even disliked by teachers and other authority figures, who will fail to back them up when they report being bullied.[5]   And even when parents report bullying to the schools, too often nothing is done.

What We Know About the Bullying of Autistic Children in Our Schools

So here’s the thing. I just started high school. And up until today, I have been really liking it. But today when I went into my binder, I found a note. It said, “Autistics aren’t welcome here go find a new school.”[6]

If students with autism are especially likely to be suicidal, it is mostly because they are so disproportionately affected by bullying. Some researchers have found that autistic children are four times more likely to be targeted by bullies than non-autistic ones. 40% of autistic kids are bullied every single day, compared with only 15% of neurotypical kids.  Children with autism are also more likely to be targeted than children with other special needs—with the possible exception of those with ADHD.[7]  In any given year, researchers estimate that between 57% and 94% of all autistic kids are bullied.[8] 

In general, bullied children receive little support from American schools.  “I feel like the public school system failed me,” writes one disillusioned adult.[9] This is true of all children, sadly, but autistic kids have special difficulties.  Most of these kids believe that their teachers and school administrators are indifferent to their suffering. It is possible, of course, that busy teachers genuinely don’t see the cruelty perpetrated in their classrooms.  However, victims often find it hard to imagine that their teachers can’t see what’s happening, since the situation is so painfully obvious to them (and since they often report it).  So they conclude that the teachers just don’t care: “They did absolutely nothing.  Ignoring it was their best policy.”[10]  This perceived (and to often real) indifference adds an additional layer of trauma to the experience.  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.[11] 

Even when bullying is formally reported to school authorities, it is remarkable how often the autistic victim’s testimony is not believed. Taylor Ibarra, an autistic fourteen-year-old in Aynor, South Carolina, killed himself in December 2017, after years of bullying. A classmate who had also been bullied at the same school stated, “It’s not fair how they treat the kids and how the administration does nothing about it. I never really fought back physically, but I went to the counselors the principals the teachers, nothing was done. This kid actually lost his life to it when it could have been prevented, and they did nothing.”[12]

Given two different accounts of what happened, schools may refuse to choose a side: “[The teachers’] favorite mantra was always ‘it’s their word against yours’.”[13]   Remarkably often, though, they take the bully’s account more seriously than their autistic victim’s.  Bullies almost always have a stronger support network than their autistic victims, so they easily find corroboration for their claims of innocence.  When it is supported by his or her friends, schools have no trouble accepted a bully’s version of events:  “. . . when I reported it to the teachers, “sorry we have to go with majority on this.”[14]  And after reporting fails, the situation commonly gets worse. Seeing that they can get away with it, bullies increase their attacks.  Indeed, teachers and administrators may actually punish the victim, while the bully gets off scot-free.[15]  In Arkansas, one autistic child who reported being bullied was called a “tattle-tale,” and forced to sit in the “time-out” chair.[16]  Eventually, victims simply stop looking to their schools for support: “I got tired of teachers never doing anything about the bullying so I quit telling my teachers about the bullying.”[17] 

To make things worse, the adults in charge of schools may be bullies themselves.  Most school personnel don’t fall into this category, of course, but across the country many individual teachers, aides, coaches, and administrators have done horrible things to the autistic kids in their charge.  In Georgia, one teacher was forced to resign after the school determined she had repeatedly sprayed Lysol into her student’s face.[18]  In an Indiana school, at the end-of-the-year awards ceremony, a special education teacher gave her student a “Most Annoying” award.[19]  In Washington State, another special education teacher responded to a mother’s request for a “quiet space” for her son to work by placing his desk over a toilet in the staff bathroom.[20]  In Michigan, a teacher recorded and distributed a video of herself and the school principal taunting a child who had gotten stuck in a chair.[21]  In California, a teacher forced her autistic student to clean her shoes in front of the class.[22]  How can students turn to their teachers for help, when the teachers themselves are so cruel?

The Long-Term Effects of School Bullying

The long horrors of their school days haunt many autistic adults. They remember (sometimes they can’t stop remembering . . .) being poked and prodded, scratched and kicked, punched, doused with noxious liquids, and pushed downstairs.  They remember being choked unconscious, set on fire, waterboarded (literally), 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 being alone on the bus, alone at lunch, alone on the playground. More than anything, they remember the mockery and humiliation, the insults and cruel imitations, the echoes of savage laughter. And maybe 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.[23]  Presumably Kabaki-Sisto meant well, but her piece was jarringly tone deaf to actual autistic experience.  

How could anyone suggest, wrote many autistic adults, that their horrific sufferings at school had a positive side?  And they are right.  Bullying induces such severe distress in schoolchildren that it may exacerbate or actually create psychological disorders— especially what psychologists call “internalizing” disorders (in which emotional distress is directed inwards.)  Loneliness, anxiety, poor self-image, depression, suicidal ideation and suicide attempts appear or intensify after bullying.  Prolonged bullying (the type most autistic kids endure) erodes trust in other people, leaving the victims feeling alone and helpless.  Responding to Kabaki-Sisto, “Jennifer” reports that her own experiences with bullying 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.[24]

Intense anxiety can follow.[25]  While Kabaki-Sisto suggested that bullying might make autistic children more aware of the people around them, one autistic adult described just what kind of awareness 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.[26]  

Kabaki-Sisto had suggested that bullying might lead to increased independence, 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.[27]

Such lack of trust increases 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.”[28]  But this only worsens the situation. Withdrawal destroys even the tiny bit of social support a child might have once enjoyed, making bullying easier than ever.

For bullied autistic students, school is a place of terror.  School refusal is a very common outcome:  many of these kids bolt when told it is time to go to school.[29]  Others may act up in school on purpose, eager to get suspended.

After I had been suspended the first time and got to stay home from school, I CONSTANTLY was trying to get in trouble in order to get suspended again. My parents never let me watch TV or anything like that on the day I was suspended, but it didn’t matter I was happy to be home, away from bullies.[31]

Even those who can force 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 her tormentors.  (We home-schooled her for her junior and senior year because we just couldn’t stand to watch her suffer any more.)  “IndieSoul” used to “shake and sweat from anxiety in school and hide in the bathrooms during recess.”[32]  Another victim reports fainting “just out of fear.”[33]  Autistic individuals already experience high anxiety, but years of bullying lay the foundation for chronic anxiety disorders: “I honestly don’t know if I’ll ever be completely rid of the anxiety.”[34] 

Particularly severe or long-lasting bullying may actually produce post-traumatic stress disorder (PTSD).[35]  To my knowledge, no researcher has examined the numbers of autistic adults suffering from PTSD due to school bullying, but many individuals report having PTSD for that reason.  Some describe their symptoms in online fora for autistics:  

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[d] by adults when I complained and after that, beaten up.[36] 

PTSD produces many other symptoms:

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.[37] 

Such debilitating symptoms make a decent quality of life nearly impossible.

The most dangerous lesson bullying teaches autistic (and other) children, though, 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 less than other people, inherently flawed, unworthy of decent treatment, and deserving of the “punishment” they are constantly receiving.

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.[38] 

I even had a school counselor tell me that it was my fault that people treated me the way I did because of the way I acted. I didn’t know what I was doing wrong, she didn’t tell me, and I didn’t know any other way to act.[39]

. . . 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.[40] 

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.[41]

Children who have absorbed these lessons often develop clinically significant depression. “I got bullied at school and was depressed all of middle school/high school.”[42]  “I got a major clinical depression because of bullying.  I’m on meds now.”[43]  Depression hinders both social and academic achievement, but it also frequently leads to thoughts of suicide—one study has found that such thoughts are 28 times more common among autistic than among neurotypical children.  Suicidal ideation is not something inherent in autism; it arises from being bullied. The same study found that bullying multiplies by three the likelihood that children with autism will think about or actually attempt suicide.[44] 

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.[45]

However happy, engaged, and enthusiastic they may have been at an early age, autistic children—like other bullied children—ultimately lose their early sense of self.  Izzy Tichenor was “a happy child. She was a happy little girl, she did well in school …”[46]  But early in November, 2021, ten-year-old Izzy killed herself.  News stories about her suicide have focused on the racist bullying she endured at school—because her death came soon after the U.S. Department of Justice had issued a scathing report about racism in Salt Lake City’s Davis School District, where she was a student.[47]  Racism was certainly a factor in her death. Izzy told her parents that her classmates had repeatedly called her n*****, and used other racial slurs.  They told her she was ugly so often that she asked her mother to remove a birthmark on her face with a razorblade.[48]  Izzy took a bottle of Febreze to school one day; asked why, she said it was because the other kids had told her she smelled bad.[49]  And other African-American students in the school district reported similar problems.  Their classmates had criticized their skin color and their smell, called them “apes” and “slaves,” and talked about lynchings.

But Izzy was not only African American; she was also autistic—an extremely dangerous combination in American society.[50]  Although most news reports have focused on the racism at her school, Izzy’s “autism and learning disability were also allegedly targeted” in the bullying, according to her family’s lawyer.[51]  And not only by students.  Izzy told her parents that her teacher didn’t like her: “She doesn’t say ‘hi’ to me. She says ‘hi’ to all the other kids.”[52]  When Izzy asked her teacher for help, she was told to sit down, that she [the teacher] didn’t want to deal with her.[53]  Sadly, American teachers often dislike their autistic students, and this teacher’s negative reactions to Izzy may have had as much to do with her autism as with her race. 

Most U.S. schools already have anti-bullying programs in place, but these programs don’t work very well.[54]  Bullying is a complex issue, with social, emotional, intellectual, and institutional components.  Much more research and many more trials will need to be done to find interventions that work.  But funding for such efforts must be found.  It is clearly long past time for American schools to face up to their bullying problem:  year after year our kids are killing themselves because of it.  More specifically, we need programs that help children with autism—those most vulnerable to both bullying and suicidality.  Unless our schools can find and implement programs that actually work, more children will die.  Like Izzy Tichenor.   Taylor Ibarra.  Kennedy LeRoy.[55] Too many.

[1] “Mother Sues Burleson ISD [Independent School District] After Son’s Suicide, Alleging School Took No Action in Bullying,” NBC Dallas-Fort Worth Channel 5 News, updated July 31, 2020:  https://www.google.com/search?client=firefox-b-1-d&q=burleson+texas+suicide.

[2] 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, January 19, 2011:  http://wrongplanet.net/forums/viewtopic.php?t=149165; redrobin62, in the “Is Suicide Common In People With Aspergers?” discussion on the same website, April 23, 2015: http://wrongplanet.net/forums/viewtopic.php?t=280538.

[3] Kayla Epstein, “A teen with autism attempted suicide after bullies told her to ‘die.’ Her family is suing the school,” The Washington Post ,May 30, 2019.  Compare the “Why Are People Telling Me to Kill Myself?” (2017) and “I Was Jus Bullied, Called a Retard & Told To Go Kill Myself” (2015) discussions on the Wrong Planet website: http://wrongplanet.net/forums/viewtopic.php?t=341134, and http://wrongplanet.net/forums/viewtopic.php?t=299688.

[4] PunkyKat, in the “People With Aspergers Don’t Care About Being Bullied” discussion on the Wrong Planet website, January 19, 2011: http://wrongplanet.net/forums/viewtopic.php?t=149165 .

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

[6] Horsegirl, in the “Not Sure What I Should Do About This…” discussion on the AutismForums website, September 25, 2018:  https://www.autismforums.com/threads/not-sure-what-i-should-do-about-this.27179/#post-549051.

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

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

[9] Victim of bullying, IdahoRose, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website, December 24, 2010: http://wrongplanet.net/forums/viewtopic.php?t=146798.

[10] LeeAnderson, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website, December 24, 2010: http://wrongplanet.net/forums/viewtopic.php?t=146798.

[11] Cyberbullying Research Center, “Helping Kids with Autism Spectrum Disorder When Bullied or Cyberbullied,” September 14, 2016:  https://cyberbullying.org/helping-kids-autism-spectrum-disorder-bullied-cyberbullied.

[12] Amy Kawata, “Vigil held for 14- year old Taylor Ibarra in hopes to prevent teenage bullying and suicide,” WMBF News (Myrtle Beach), January 21, 2018: https://www.wmbfnews.com/story/37312824/vigil-held-for-14-year-old-taylor-ibarra-in-hopes-to-prevent-teenage-bullying-and-suicide/.

[13] Verdandi, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website, December 24, 2010:  http://wrongplanet.net/forums/viewtopic.php?t=146798.  See also Pandora_Box, in the same discussion, December 24, 2010.

[14] Pandora_Box, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website, December 24, 2010: http://wrongplanet.net/forums/viewtopic.php?t=146798.  See also CreativeInfluenza, in the same discussion, December 24, 2010.

[15] Some examples of the negative consequences of reporting:  Sparrow Rose Jones, No You Don’t: Essays from an Unstrange Mind (Self-published, 2013), p. 94; MightyMorphin, in the “If You Were Bullied At School . . . “ discussion on the Wrong Planet website, July 22, 2012:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=204456&start=45; JoeDaBro, in the “My School Hates Autism” discussion on the Wrong Planet website, May 27, 2013:  http://wrongplanet.net/forums/viewtopic.php?t=231793.

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

[17] ladyelaine, in the “Why School Sucked” discussion on the Wrong Planet website, December 29, 2017:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=357585&start=45.

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

[19] Liz Weber, “A special education teacher gave her autistic student a year-end award: ‘Most annoying’,” The Washington Post, June 4, 2019:  https://www.washingtonpost.com/education/2019/06/04/indiana-teacher-bailly-preparatory-academy-gives-autistic-student-most-annoying-award/.

[20] Emily Rueb, “A School Put an Autistic Boy’s Desk in a Bathroom, Setting Off a Debate on Stigmas,” The New York Times, September 24, 2019:  https://www.nytimes.com/2019/09/24/us/autistic-boy-bathroom-toilet-desk.html.

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

[22] Kayla Dimick, “Lawsuit claims SPS [Southfield Public Schools] teacher humiliated student with autism,” The Southfield Sun March 8, 2017:  https://www.candgnews.com/news/lawsuit-claims-sps-teacher-humiliated-student-autism-99915.

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

[24] Jennifer, “A Response to the Ten Perks Children with Autism Get From Bullying,” on the Autistic Giraffe Party  (now simply known as Giraffe Party) Facebook page, October 14, 2015: https://www.facebook.com/autisticpartygiraffe/posts/429266380617441.

[25] 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.

[26] J.T. Dabaggian, “Why Karen Kabaki-Sisto’s 10 ‘Perks’ for bullied autistic kids is bull,” Medium magazine, October 16, 2015:   https://medium.com/@jtdabbagian/why-karen-kabaki-sisto-s-10-perks-for-bullied-autistic-kids-is-bull-7f14d97aabf4.

[27] “There Are No Perks to Being Bullied,” on the Purpleaspie blog, October 16, 2015:  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, October 15, 2015:  https://thedigitalhyperlexic.wordpress.com/2015/10/15/ten-things-this-autistic-kid-learned-from-being-bullied/.

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

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

[30]

[31] SchrodingersMeerkat, in the “Is Suspension Really a Punishment” discussion on the AutismForums website, November 29, 2017:  https://www.autismforums.com/threads/is-suspension-really-a-punishment.22893/#post-455520.

[32] IndieSoul, in the “Aspergers and Social Anxiety Disorder?” on the Wrong Planet website, July 3, 2012:  http://wrongplanet.net/forums/viewtopic.php?t=202798.

[33] Iknewyouweretrouble, in the “Were You Bullied in School?” discussion on the Wrong Planet website, June 27, 2013:  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, again on the Wrong Planet website:  “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).

[34] IndieSoul, in the “Aspergers and Social Anxiety Disorder?” on the Wrong Planet website, July 3, 2012:   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, May 24, 2013:  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, January 19, 2011: http://wrongplanet.net/forums/viewtopic.php?t=149165; xxautisticfoolxx’s contribution to the “Unable to deal with the cruelty of life” discussion on the Wrong Planet website, March 1, 2018:  https://wrongplanet.net/forums/viewtopic.php?t=360970.

[35] 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.

[36] Ameriblush, in the “Remembering years of bullying” discussion on the AutismForums website, December 3, 2017:  https://www.autismforums.com/threads/remembering-years-of-bullying.22944/#post-456806.

[37] Jellybean, in the “Complex PTSD As Result of Severe Bullying” discussion on the Wrong Planet website, July 24, 2009:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=47533&start=45.

[38] This_Amoeba, in the “People Normalizing Bullying You Got As A Child” discussion on the Wrong Planet website, February 4, 2017: https://wrongplanet.net/forums/viewtopic.php?t=336587.

[39] Hanyo, in the “If You Were Bullied at School, Did It . . .” discussion on the Wrong Planet website, July 1, 2013:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=234399.

[40] Daedal, in the “People with Aspergers Don’t Care About Being Bullied” discussion on the Wrong Planet website, January 19, 2011:  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, October 16, 2015:  https://medium.com/@jtdabbagian/why-karen-kabaki-sisto-s-10-perks-for-bullied-autistic-kids-is-bull-7f14d97aabf4.

[41] Kirsten, “Bullying . . . The Real Problem . . . An Aspergian Woman’s Perspective,” on the Wrong Planet website, 2017:  http://wrongplanet.net/bullying-the-real-problem-an-aspergian-womans-perspective/.

[42] IHaveAspergers,” in the “Is Suicide Common In People with Aspergers?” discussion on the Wrong Planet website, April 20, 2015:  http://wrongplanet.net/forums/viewtopic.php?t=280538.

[43] hello07, in the “People with Apergers Don’t Care About Being Bullied” discussion on the Wrong Planet website, January 18, 2011:  http://wrongplanet.net/forums/viewtopic.php?t=149165.

[44] 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.  A more recent study suggests that bullying multiplies the risk by two:  Rachel Holden, et al., “Investigating Bullying as a Predictor of Suicidality in a Clinical Sample of Adolescents with Autism Spectrum Disorder,” Autism Research 13 (2020), 988-997.

[45] Kateryna Fury, “Why Bullying Isn’t Healthy for ANYONE,” on her Textual Fury blog, October 15, 2015: 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/.  T

[46] The Tichernor family’s lawyer, quoted in Elizabeth Joseph, “10-year-old Utah autistic student dies by suicide weeks after scathing DOJ report on school district,” CNN News, November 13, 2020:  https://www.cnn.com/2021/11/12/us/isabella-izzy-tichenor-utah-bullying-claims-suicide/index.html.

[47] Elizabeth Joseph, “10-year-old Utah autistic student dies by suicide weeks after scathing DOJ report on school district,” CNN News, November 13, 2020:  https://www.cnn.com/2021/11/12/us/isabella-izzy-tichenor-utah-bullying-claims-suicide/index.html;  “Justice Department Reaches Settlement to Remedy Severe Racial Harassment of Black and Asian-American Students in Utah School District,” U.S. Department of Justice, Justice News, October 21, 2021:  https://www.justice.gov/opa/pr/justice-department-reaches-settlement-remedy-severe-racial-harassment-black-and-asian.

[48] Austin Facer, “‘It strikes a lot of chords’: Izzy Tichenor’s family’s lawyer speaks on her case, plans to take it to federal court,” on ABC4, Salt Lake City, Utah, December 9, 2021: https://www.abc4.com/news/digital-exclusives/it-strikes-a-lot-of-chords-izzy-tichenors-familys-lawyer-speaks-on-her-case-plans-to-take-it-to-federal-court/.

[49] Elizabeth Joseph, “10-year-old Utah Black and autistic student dies by suicide weeks after scathing DOJ report on school district,” CNN News, November 13, 2020:  https://www.cnn.com/2021/11/12/us/isabella-izzy-tichenor-utah-bullying-claims-suicide/index.html.

[50] Leonard Pitts, “When Should We Teach Kids About Race? Must Be Nice to Have a Choice,”
 The Miami Herald, November 12, 2021 (behind paywall);  reprinted on Newsbreak:  https://www.newsbreak.com/news/2432400515601/when-should-we-teach-kids-about-race-must-be-nice-to-have-a-choice-opinion.

[51] Austin Facer, “‘It strikes a lot of chords’: Izzy Tichenor’s family’s lawyer speaks on her case, plans to take it to federal court,” ABC4 News, Salt Lake City, December 9, 2021:  https://www.abc4.com/news/digital-exclusives/it-strikes-a-lot-of-chords-izzy-tichenors-familys-lawyer-speaks-on-her-case-plans-to-take-it-to-federal-court/.

[52] Lauren Sue, “’I Let Them Work It Out”:  Vile Teacher Allegedly Tells Mom When Black Student Told Her [the teacher] Skin Stinks,” The Daily Kos, November 11, 2021:  https://www.dailykos.com/stories/2021/11/11/2063667/-DOJ-declares-Utah-district-a-safe-haven-for-racists-weeks-before-Black-10-year-old-commits-suicide; Elizabeth Joseph, “10-year-old Utah autistic student dies by suicide weeks after scathing DOJ report on school district,” CNN News, November 13, 2020:  https://www.cnn.com/2021/11/12/us/isabella-izzy-tichenor-utah-bullying-claims-suicide/index.html.

[53] Keith Reed, “Black Fifth Grader’s Suicide Blamed on Bullying,” The Root, November 10, 2021:  https://www.theroot.com/black-fifth-grader-s-suicide-blamed-on-bullying-1848034647.  This part of the article is a quotation from an article in the Salt Lake City Tribune, which I have not been able to reach because of their paywall.

[54] “Overall, the existing educational interventions had very small to small effect sizes on traditional bullying and cyberbullying perpetration”:  Esperanza Ng, et al., “The Effectiveness of Educational Interventions on Traditional Bullying and Cyberbullying Among Adolescents: A Systematic Review and Meta-Analysis,” Trauma, Violence & Abuse 23:1 (2022), 132-51.  See also H. Gaffney, et al., “What works in anti-bullying programs? Analysis of effective intervention components,” Journal of School Psychology, 85 (2021), 37– 56.

[55] Los Angeles one.

Revised: Educating Autistic Children, 1950-1975

Autism, Autistic Intelligence, Bullying, Education, Psychiatric hospitalization, , ,

As I mentioned a few weeks back, I’m pulling material out of my overly long book in order to make it shorter. And then I’m posting that material here. This is an extended version of a post I made in February 2017, but with extra material I added for the book. Hope you find it interesting.

The vast majority of adults recognized as autistic today did not have that label when they were children.  Certainly, most adults with what we today call “level 1 autism”[1] would never have been considered autistic in childhood, first because they did not meet the very strict diagnostic criteria laid out by Leo Kanner in the 1940s, and also because so few people had even heard of autism. They might only have been considered “weird” or “eccentric.”  An exception was Temple Grandin, famous today for her work in animal science and her advocacy on behalf of people with autism.  As a child, she was diagnosed as “brain-damaged”—only much later was she recognized as autistic.[2] 

On the other hand, most adults today described as “level 3” autistics[3] were incorrectly diagnosed in their childhoods.  They were almost always labelled “psychotic” or “intellectually disabled” or both.[4]  Before the 1990s, only a tiny number of children who happened to come to the attention of the small number of researchers interested in the subject, and who met Kanner’s strict criteria, were ever actually labelled “autistic.”  As a result, we will need to distinguish between the ways in which these three groups were educated in the past—those who were “eccentric” but “normal,” those who were considered intellectually disabled/mentally ill, and the tiny number actually diagnosed as “autistic.” 

Before 1975, when the Education for All Handicapped Children Act was passed, most “eccentrics” attended the same schools as their siblings.  They usually did so without any support services unless they had additional disabilities, or some thoughtful teacher came to their assistance.  A few of them flourished.  Others report a painful struggle at school, being punished for behaviors that were beyond their control and wrestling with learning problems that neither they nor their teachers understood.  Dawn Prince-Hughes (who later earned a Ph.D. in Anthropology) recalls the horrible year in third grade when she both developed severe asthma and encountered a particularly nasty teacher.  This teacher punished her for her unexplained failings in math by refusing to let her engage in the reading and writing assignments at which she excelled.  She also announced Prince’s failing math grades, plus the fact that she was being tested for “mental retardation,” to the entire third-grade class.[5] 

These undiagnosed children almost always endured horrendous bullying from both teachers and classmates.[6]   Insults, real and threatened beatings, tripping, pushing, being shut in lockers, suffering “swirlies” in the toilet and other forms of humiliation were commonplace.[7]  For some, this was simply the way things were: 

It never occurred to me at that time to talk to my parents about the problem of bullying in school and the teachers never told them either.  I accepted it as a fact of life.[8] 

Others were driven to retaliate.  After years in elite private schools for girls, Temple Grandin finally got tired of being called names.  When one of her seventh-grade classmates called out, “Retard!  You’re nothing but a retard!”, Grandin threw a book at her, hitting her in the face.  She was expelled from the school as a result.[9]  A few of these kids became bullies themselves. [10]  Still others, like John Elder Robison, finding it too difficult to cope with the stresses of school, either dropped or failed out.[11] 

But what about the other two groups, the tiny few with an actual autism diagnosis, and the much larger number considered “mentally retarded” or “psychotic”?  Before 1975, these children seldom received much schooling at all.  Most public school systems refused to allow them in their classrooms.[12]   A few parents managed to get a diagnosed child into a school, but the experiment seldom lasted more than a few months before the child was either withdrawn or expelled.[13]  No services existed to help such a child survive, let alone thrive, in the public school environment.  A few well-informed or well-connected families managed place their children in one of a handful of establishments designed specifically for the “severely damaged” or “profoundly disabled.”[14]  These establishments tended to focus on teaching functional living skills (toileting, dressing, speaking).  But sometimes they offered the basics of reading, writing and arithmetic to children who were considered able to manage those subjects.[15]  Judgments about ability were seldom correct, however.  Charles Martel Hale, Jr., for example, who was non-speaking and labelled “severely to profoundly mentally retarded,” attended a supposedly high-quality program in Queens, New York in the early to mid-1970s.  He learned living skills, but not academics.  But when he finally learned to communicate on the typewriter and computer in the 1990s, he explained that he had taught himself to add, subtract and multiply by listening to conversations and television programs.[16]

Most “autistic,” “psychotic” or “mentally retarded” children were (on the advice of doctors and other professionals) swiftly shunted into psychiatric institutions or homes for the “feeble-minded,” and left to fend for themselves.[17]  Tom McKean, who had attended his neighborhood school from kindergarten through third grade, before being transferred to classes for the Learning Disabled, was finally diagnosed as autistic in seventh grade and promptly removed to a psychiatric institution.[18]  Some of the institutions in which these children were confined called themselves “schools,” but few offered much in the way of an education.  They might provide various forms of vocational training, so that residents could help “earn their keep.”  Most, though, were simply warehouses.  There, autistic residents lived in ignorance and squalor, exposed to hunger, cold, and disease, and subject to abuse by older children and adult residents and staff.  Jerry Alter entered the first of a series of psychiatric institutions at the tender age of five.  When they visited, his parents found him with bruises and black eyes, and so heavily medicated that he spent most of his time sleeping; later his sister expressed gratitude that he “only” acquired tuberculosis, and not—like so many other residents—a venereal disease at the state hospital where he was living.[19]  This was the kind of brutal environment in which most obviously autistic children found themselves before 1975.

  • – – – – – – – – – – –

[1] Still commonly called “high functioning” autism, even though functioning labels have little real meaning, as we shall see below.

[2] Temple Grandin and Richard Panek, “The Autistic Brain:  The origins of the diagnosis of autism—and the parental guilt-tripping that went along with it,” Slate Magazine (May, 2013): http://www.slate.com/articles/health_and_science/medical_examiner/2013/05/temple_grandin_s_the_autistic_brain_an_excerpt_on_the_history_of_the_autism.htm NOTE: I have no idea why this note came out with different formatting, but I don’t seem to be able to change it. Oh well . . .

[3] Commonly called “low functioning,” although, again, these labels are largely meaningless. 

[4] Autism, as defined by Kanner, was considered a form of childhood schizophrenia until the 1970s.

[5] Dawn Prince-Hughes, Songs of the Gorilla Nation:  My Journey through Autism (New York:  Random House, 2004), pp. 41-44.   Given the popular association of autism with special math skills, it is worth noting how many autistic adults, undiagnosed as children, remember struggling with the subject in their childhood.  Liane Holliday Willey reports that she “hated and was terrible in math”:  Pretending to Be Normal:  Living with Aspergers Syndrome (London:  Jessica Kingsley Publishers, 1999; expanded ed., 2014), p. 47.  Stephen Shore’s first grade teacher told his parents that he would never be able to do math.  In college, however, he successfully completed calculus and statistics, and earned a degree in accounting, before going on to earn a Ph.D. in Special Education: Beyond the Wall:  Personal Experiences with Autism and Asperger Syndrome (Shawnee Mission, KS:  Autism Asperger Publishing Co., 2002;  2nd ed. 2003), p. 53

[6] Sparrow Rose Jones, “Autistic Pride Day 2015—Letter to Myself as a Child,” on the Unstrange Mind blog:  https://unstrangemind.wordpress.com/2015/06/18/autistic-pride-day-2015-letter-to-myself-as-a-child/ .

[7] There will be more on this topic below.

[8] Stephen Shore, Beyond the Wall:  Personal Experiences with Autism and Asperger Syndrome (Shawnee Mission, KS:  Autism Asperger Publishing Co., 2002;  2nd ed. 2003), p. 56.

[9] Temple Grandin, with Margaret Scariano, Emergence:  Labeled Autistic  (Novato, CA:  Arena Press, 1986; reissued with additional material:  New York:  Grand Central Press, 2005), pg. 68.

[10] Cynthia Kim, Nerdy, Shy and Socially Inappropriate:  A User Guide to an Asperger Life (London and Philadelphia:  Jessica Kingsley, 2015), pp. 12-17.

[11] John Elder Robison, Look Me in the Eye:  My Life with Aspergers (New York:  Broadway Books, 2007), pp. 85-94.

[12] On the exclusion from school of children with an autism diagnosis before 1975, see Anne Donnellan, “An Educational Perspective on Autism: Implications for Curriculum Development and Personnel Development,” in Barbara Wilson and Anneke Thompson, eds., Critical Issues in Educating Autistic Children and Youth (Washington, DC:  United States Department of Education, 1980), p. 53. 

[13] For an example of a diagnosed child who spent a short while in the public schools, see Jules Bemporad, “Adults Recollections of a Formerly Autistic Child,” Journal of Autism and Developmental Disorders 9 (1979), p. 184.  Incidentally, the word “formerly” in the article title does not refer to any form of “recovery” from autism.  Instead, the child whose life is recounted has turned into an adult and Bemporad seems unwilling to describe an adult as “autistic.”

[14] E.g., Rud Turnbull, The Exceptional Life of Jay Turnbull:  Disability and Dignity in America, 1967-2009 (Amherst, MA:  White Poppy Press, 2011), Chapter 2.

[15] The individual interviewed by Jules Bemporad (note 11 above), learned to multiply in such a school—this skill later provided him with great satisfaction. But his school was exceptional.

[16] Charles Martel Hale, Jr., “I Had No Means to Shout” (Bloomington, IN:  1stBooks Library, 1999).

[17] Wendlyn Alter, “You’ve Come a Long Way Baby:  An Interview with Jerry Alter,” Chalice (April-May, 2014), pp. 11-15, describes how her brother Jerry was hospitalized at the age of 5.

[18] Thomas McKean, Soon Will Come the Light:  A View from Inside the Autism Puzzle (Arlington, TX:  Future Horizons, 1994; 2nd ed. 2001), pp. 3-5.

[19] Wendlyn Alter, “You’ve Come a Long Way Baby:  An Interview with Jerry Alter,” Chalice (April-May, 2014), pp. 11-15.

Fa la la la la . . . Racism

Uncategorized, ,

Yesterday, during this festive season, my adult, autistic daughter went to a local Walgreens to get her Covid booster shot. She had an appointment and she had her vaccination card with her. Luckily she had a few other things stored on her phone.

For those of you who don’t know her, my daughter is Chinese by birth, adopted as a baby, and a naturalized U.S. citizen. The people behind the counter at Walgreens said she couldn’t get the shot because she was Chinese and China “caused Covid.” They said she couldn’t get the shot because she was an illegal immigrant (their phrase, not mine). She showed them a copy of her American passport on her phone–they claimed she had photoshopped it.

They said she wasn’t old enough to get the shot without parental permission, so she showed them her driver’s license. You guessed it–they said she had photoshopped it.

They said she didn’t have an appointment. She showed them the appointment code on her phone. They said they couldn’t give her the shot because she didn’t have health insurance (Covid shots don’t require health insurance). When she showed them her insurance card anyway, they claimed (I swear I am not making this up) that Aetna was not a real insurance company!

They said she needed to have a college degree to get the shot (??!!??). She showed them a picture of herself at her college graduation.

They said they didn’t have any shots left (even though other people were there waiting for shots). A minute later, they actually offered a shot to my daughter’s friend, who is white.

At this point my daughter and her friend began walking around the store, readings statistics about the Omicron variant off of their phones, and lamenting very loudly that she would be involuntarily spreading the variant because she hadn’t been allowed to get her shot.

Finally, the other people waiting for their shots began yelling at the staff. One man, bless his heart, threatened to call the police on them. When the nurse heard the noise, she came out of her little room and asked what was going on. Then she immediately called my daughter back and gave her the shot. The whole process had lasted about 3 hours.

I know other people have gone through racists shit like this, and much worse. But I am SO very proud of my daughter for sticking to her guns. She had a meltdown (understandably) afterwards, but by golly she got her shot!

Now, if you’ll excuse me, I’m going to go raise hell at the pharmacy myself.

What Will It Take?

Uncategorized

Just heard that the circuit court in Washington, DC, has ruled in favor of the despicable Judge Rotenberg Center in Massachusetts. The Center will be allowed to continue using electric shocks, not as therapy, but simply to keep its autistic patients under control. This is a sad day. Torture is alive and well in the United States.

Passing and Exhaustion

"Passing", Anxiety, Autism, Disclosure, Employment, Human Rights, Masking, Normalization, , , , , , ,

“I identify as tired.” [1] –Emily Ballou

Autistic people who can appear “indistinguishable from their peers” pay a huge price for that achievement.  The cost is exhaustion—exhaustion to the point of incapacity, of burnout, of despair.  In the absence of a “typical” neurology, it 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.  In a blog post often cross-posted and referenced by other members of the autism community, Kassiane Sibley offered a particularly rich discussion of this issue.  The passage is very long, but I want to include it in full because the language is so evocative.  It opens with a word often used by the online autistic community: “allistic”—meaning someone who is not autistic.

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.[2]

This desperate effort does not, cannot stop with childhood.  “High-functioning” autistic people’s “emulator software” requires constant maintenance and upgrading throughout adult life, sucking away energy that might be devoted to more productive activities.[3] 

Adult autistics trying to pass have to focus intensely on all kinds of things most of rest of us never even consider.[4]  If they are lucky enough to have a paying job, for example, they must still keep 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.  For instance, riding a bus, 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.—all while looking as “normal” as possible.[5]  Once you get to work, you face 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), cause headaches and dizziness.  The constant noise as people move around the room, talking on the telephone or to each other, is not just “background noise” if you are one of the many autistic people who can’t distinguish between different layers of sound.  The overwhelming office wall of sound makes it difficult to understand what your boss or the person on the phone is trying to tell you, and embarrassing when you make a mistake.[6]  Intense smells in the bathroom and lunch room make you nauseous.  You are constantly aware of the uncomfortable tightness or scratchiness of work clothes.  You may even have to struggle to maintain the correct physical appearance.  Michael Scott Monje (the pen name of Athena Michaels-Dillon) describes what it’s like to “artificially hold” her face, for hours, to hide the fact that her eyes are not symmetrical and that her mouth naturally twists so that one side is open.[7] 

Employment also consists of a multitude of supposedly simple social interactions—involving eye contact, small talk, and constant snap judgments about appropriate responses.  All of this 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.[8]

Autistics trying to “pass” as neurotypical at work cannot use their best coping mechanisms—they can’t use stimming to release tension, they can’t hide in a dark, quiet room, or have a complete meltdown on the bus–because this will break through the neurotypical disguise and expose the autistic beneath.  (The meltdown on the bus may also lead to a police call and involuntary hospitalization.)  All you can do is suck it up.  Yet 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.[9]  

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.”[10]  Or:  “That me sitting here having a conversation in a way that reads as baseline normal to you is so high-energy that I’m going to start to break down from it in about half the time as you and have to go home and collapse.”

The harder these autistic adults work at passing, the higher the price they pay in exhaustion; the more exhausted they get, the weaker their ability to keep up the act.  Michael Scott Monje is a successful writer and a university lecturer.  But she has trouble keeping her face looking “normal,” and she 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. [11]

In other words, this intelligent, accomplished person who is sometimes able to be “indistinguishable from her peers,” will eventually collapse into her natural, non-speaking autistic state when she becomes just too tired to keep up the act anymore.

[1] Emily Paige Ballou, “I Identify as Tired,” on The Thinking Person’s Guide to Autism website, December 31, 2019:  http://www.thinkingautismguide.com/2019/12/i-identify-as-tired.html.  Ballou is using a phrase taken from a famous routine by autistic comedian Hannah Gadsby.

[2] Kassiane Sibley, “The Tyranny of Indistinguishability:  Performance,” on the Radical Neurodivergence Speaking blog, November 7, 2013, now moved to her Time to Listen blog:

http://timetolisten.blogspot.com/2013/11/the-tyranny-of-indistinguishability.html.  Compare Trogluddite, in the “Is Camouflaging Bad?” discussion on the Wrong Planet website, July 9, 2018:  https://wrongplanet.net/forums/viewtopic.php?t=366036&p=7954962.

[3] Emily Paige Ballou, “I Identify as Tired,” on The Thinking Person’s Guide to Autism website, December 31, 2019:  http://www.thinkingautismguide.com/2019/12/i-identify-as-tired.html.

[4] Kate, “Passing,” on The Thinking Person’s Guide to Autism website, September 14, 2012:  http://www.thinkingautismguide.com/2012/09/passing.html..

[5] See the “How common are public transport issues in people with ASD?” discussion on the Wrong Planet website, November, 2011:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=179933&start=16.

[6] See, for example, youngeezer, in the “Cannot Stand the New Office” discussion on the Wrong Planet website, November 27, 2013:  https://wrongplanet.net/forums/viewtopic.php?t=245949;  and the “The Negative Impacts of Open Offices” discussion on the same website, October, 2017:  https://wrongplanet.net/forums/viewtopic.php?t=355333.

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

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

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

[9] “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/.  On the long-term costs of passing, see also Emily Paige Ballou, “The Unrecovered,” on the Thinking Person’s Guide to Autism blog, January 11, 2020:  http://www.thinkingautismguide.com/2020/01/the-unrecovered.html.

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

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

[11] Michael Scott Monje (Athena Michaels-Dillon), “Not That Autistic,” originally published on her blog, Shaping Clay, in 2013, but updated for publication in The Real Experts:  Readings for Parents of Autistic Children, ed. Michelle Sutton (Autonomous Press, 2015).

Uh Oh. Here comes data…

Autism, Human Rights, Neurodiversity, , ,

Dear Folks. As you know, I’ve been working for years now on a book on autism and human rights. I’ve recently been looking for publishers, and one of them, on their submission portal, asked how long the book was. So I went back and counted words.

Whoops! It’s way, WAY longer than anyone is going to publish or most normal (autistic or neurotypical) people would want to read. Being who I am, I need to provide data to back up the points I make. But the data is making the book far too long. So–change of plan.

I’m going to take most of the data and detailed arguments about the data out of the book and put it here on my blog. So if anyone wants to know why I say certain things in the book, the back-up information will be here.

Of course, dear readers, that means YOU get stuck with all that data. I will do my best to feed it to you in small and fairly palatable chunks, and to intersperse it with other things. I hope you will stick with me, because this information is important and should be widely known.

Thanks for your patience.