I finally have a full draft of my book, What Today Withholds: Autism and Human Rights in America!
Still need to do some copy editing and formatting, but I hope the book will be out this summer.
If you want to keep up with the process, check out my other wordpress site, meganmclaughlinwriting.com, and sign up for my newsletter (which I must admit has been pretty pitiful so far, since I’ve been so focused on the book itself).
“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).
If you haven’t had a chance to read it yet, I highly recommend Eric Garcia’s new Book, We’re Not Broken: Changing the Autism Conversation. As the title suggests, it is devoted to changing the conversation about autism by debunking myths and describing lived experience. Very well researched and written, by a professional (autistic) journalist.
That said, this is kind of bad news for me. I’ve spent the last 8 years writing a book about autism and human rights in the U.S., and Garcia has really scooped me. I’m not giving up on my book–it does some things his doesn’t. But I had hoped to be the first on the market with many of the points he makes. Oh well. His book is great and deserves to make a big impact.
Information gathered by the government… most especially the police or Justice Department… always ends up being used for punitive purposes…
📰🚨🔥🗞️Opinion: Accept Autism. Don’t Register it. — #AutisticAF.me
Good words from JohnnyProfane. Check out his blog at https://autisticaf.me
Hi. As many of you know, a lot of the posts on this blog are part of a book on autism and human rights in the United States that I am close to finishing.
Now I’m starting to spread the word about it (before they even consider your book, publishers want you to have a group of people who are interested in buying or reviewing it already in place . . .)
If you are interested, please go to my author’s website at http:/meganmclaughlinwriting.com and sign up for email updates (I promise there won’t be too many, because that’s annoying, right?)
Thanks!
Many students—not just autistic ones—believe that they have been unfairly suspended or expelled from school. Many students—not just autistic ones—do not fully understand why they were suspended or expelled (sometimes it is hard for adults to figure that out either). Suspensions are very often used as a punishment in U.S. schools not only for serious offences, but also for all kinds of minor infractions of the rules. Crying in school may lead to unofficial suspensions, in which parents are told to pick up their children and take them home. But students may be officially suspended for not meeting the school dress code (this includes even very young children, whose parents pick out their clothes), for having the “wrong” hairstyle, or even for carrying a backpack with the “wrong” picture on it.[1] Most school codes of student conduct still include vague terms for misbehavior, such “insubordination” or “willful defiance,” which individual teachers can interpret subjectively. In recent years, some major school districts have removed this language, but in many other places students can still be suspended for eye-rolling, walking away from a teacher without being dismissed, failing to complete homework, or even tapping their feet on the floor.[2]
Sometimes just needing to use the restroom at an inconvenient time for the teacher or other school staff member will be enough. In December 2018, an 11-year-old autistic African-American child asked to use the bathroom in his elementary school. The principal of the school, who was escorting him and another student back to their special education classroom, refused to let him go–even though access to the restroom at any time was the rule for Special Education students. The child couldn’t get around the principal to reach the nearby bathroom, so he went out the back door of the school to find another restroom. The principal then ordered school staff to lock all the doors and not let the student back in. He wasn’t trying to run away—in fact, he spent 15 minutes circling the school, as teachers ignored his appeals for help, walking past him outside without speaking, and even pulling down the window blinds in his face. Finally, another student took pity and opened a door for him. The school sent his parents an incident report, but they failed to mention the dangerous and illegal lock-out—and the child received a two-day suspension for leaving the school building without permission. Only after the school’s security tapes were reviewed did the true story come out. The principal was then placed on paid administrative leave.[3]
Suspension and expulsion are over-used forms of discipline in American schools, for students of all neurotypes. But autistic children face special challenges. Sensory, emotional, or other stressors can drive them into meltdowns or shutdowns, during which their “fight or flight” instincts take control, sometimes leading to violent reactions. Meltdowns /shutdowns are clearly “manifestations” of autism, and so theoretically schools should respond to them with behavioral interventions. Yet in practice, many autistic students face suspension, expulsion, and even arrest for what they do during these episodes. Students cannot control their own actions during meltdowns, so is it reasonable or fair for them to be punished in this way?
Moreover, many teachers don’t acknowledge their own role in triggering these problems. In New Mexico, for example, a second-grader had a meltdown because his teacher yelled directly into his face, and then took away his Ipad, which was a very important comfort object for him. She caused the meltdown, during which she was struck in the nose, causing a bruise. Yet not only was the child—who happens to be black—suspended from school for having a meltdown, but his teacher actually pressed battery charges against an 8-year-old.[4]
In Florida, an autistic fourth-grader who had just gone through a long, stressful day of testing, was bothered by the noise when his teacher put on a movie (presumably as a reward for the other students.) Seraph put on headphones and sat at a computer to distract himself from the noise, but he could still hear the movie. So he started tapping computer keys loudly to drown it out. That’s where the trouble began. The teacher called in the dean, the assistant principal, and the school resource officer to remove him from his classroom. He was willing to leave, but, looking for a quiet place to recover from the noise, he entered the school media room. At this point, another teacher began reading a book to him—yet more noise. Seraph, with his hands covering his ears, went over to the teacher and knocked at the book, using his elbow. (The teacher was untouched). The school resource officer then tackled him to the ground with so much force that Seraph ended up with carpet burns on his face. He was suspended for several days—not because anyone was injured or even threatened, but simply because he was autistic and overstressed by noise.[5]
It is not unusual for autistic students to be get in trouble for leaving their classroom, or even their school without permission. What is unusual is for schools to acknowledge what autistic students remember–that they often fled to avoid bullying:
I received three suspensions from my school during my time there, two for leaving the room to seek sanctuary in the library when the entire class (teachers included) united in mocking me, and one for deliberate non attendance over a period of days (truanting).[6]
Autistic students are disproportionately bullied at school. And within a few years of being in school, they realize that the advice they are given—”speak to a member of the school staff”—is almost always ineffective. School staff rarely stop the bullying. They may fail to see what happened (and bullies are very adept at flying under the radar). They may believe the bullies rather than the victim—because a highly verbal neurotypical bully can be more convincing than an autistic victim, or because there may be multiple bullies whose united testimony outweighs that of the victim. (This is what happened to my own daughter.) School staffers may simply not care.
one time a boy way bigger than me punched me in the face and made my nose bleed, and a teacher caught me inside trying to clean myself up, and I got yelled at for being inside during recess even though I was dripping with blood; nothing was done about the boy who hit me . . .[7]
People beat me up and they’d go free and I’d be in detention.[8]
Teachers may even dislike the autistic student and want him or her to suffer. One autistic student listed reasons why she hated school:
Being bullied and being told it was my fault.
Being my teacher’s punching bag.[9]
The only solutions for these students are either to endure the suffering (the trauma this causes was described in an earlier post), to run away (and thus be suspended), or to retaliate—and retaliation often ends in their being suspended or expelled as well. Here is “Aristophanes’s” description of his experience at school:
Attempting to avoid a fight, getting flat out sucker punched instead, and going to the principal who gave me as much detention as the aggressor, reasoning ‘you’re going to be an adult soon, you need to learn to solve your own problems, that’s the lesson here.’
Going back literally a week later, getting punched again, and retaliating by stomping my heel on the kid’s ankle, fracturing his tibia and earning me a suspension that go around.[10]
Other autistic students remember fighting with their bullies, and then being punished for it—while the bullies got off scot free:
Once [a privileged person] tried to stab me and he got off without a punishment simply because [his] family was rich. I got a suspension and was threatened with expulsion because i kicked him in the stomach and dropped him to the ground.[11]
An increasing number of parents are filing lawsuits against school districts that allow things like this to happen. For example, a Staten Island teenager was suspended for three days because he allegedly pushed to the ground bullies who had been physically assaulting him for years—including breaking his arm at one point. His parents sued the school district, “claiming he was wrongfully punished for something his school should’ve done — and that’s stop his bullying.”[12] A lawsuit pending in Cinncinnati, Ohio, charges a local school district with denying a student’s right to FAPE, both by refusing to recognize his disabilities and provide appropriate accommodations, and by failing to address the constant bullying he was subjected to. The suit alleges that the school district suspended this young man multiple times, when he fought back or even just shouted at the students bullying him. Even when he didn’t fight back, the school sometimes disciplined him. In one of the incidents reported in the lawsuit, a bully spit on him, and called him names on the school bus. It was the victim, not the bully, who was suspended for this incident.[13]
Perhaps the most significant problem with the use of suspension and expulsion as forms of discipline is that many autistic students hate school, and therefore prefer being removed from it. This is the attitude of “Agent Smirnoff”:
I thoroughly enjoyed my time in suspension, as it granted me peace from the incessant bullying and allowed me to play on my computer all day.[14]
“deog” felt the same was about expulsion:
The highschool years are very difficult. . . . My misery and depression was profound. I got expelled by my sophmore year. i was ditching certain classes almost every single day… I was so happy when I got expelled and I have no regrets about that because I was just done . . .[15]
It is fairly common for autistic and other students to misbehave on purpose in order to get some relief from their sufferings at school. Sebastian, a student in New Mexico “relished being sent to in-school suspension, which he came to see as a haven from the stress of the classroom. Once, his mom says, he randomly punched a classmate in the parking lot in an effort to get sent back to the peace and quiet of in-school suspension.”[16]
When I was in grade school, I would purposely act up in order TO GET suspended. Sure my mom wouldn’t let me watch TV and stuff and would sometimes make me work on store bought workbooks, but I didn’t care. I just didn’t want to be at school. Suspension was a reward to me. The school was starting to catch on that I was acting up on purpose and tried something called an “in school suspension”. I was in a classroom with a “babysitter” and with the exception of the “babysitter”, I was all alone. I was allowed to draw and color all day long. The classroom I was in was even quieter than my own house. I perfered quiet. Some punishment.[17]
The problem with students seeking out suspension and even expulsion for relief from stress is that they don’t realize the implications for their future. Having a “record” is not helpful when applying to college or looking for a job, but many autistic students find school so painful that they don’t care.
Instead of suspending autistic students at such high rates, school districts should be looking for ways to make school more tolerable for them, ways to prevent them from having meltdowns, ways to seriously address the problem of bullying.
[1] Morgan Craven et al., “Suspended Childhood: An Analysis of Exclusionary Discipline of Texas’ Pre-K and Elementary School Students, Updated with 2015-16 Data,” for the Texas Appleseed organization, November, 2015; updated March, 2017: http://stories.texasappleseed.org/suspended-childhood-updated.
[2] Nina Agrawal, “California expands ban on ‘willful defiance’ suspensions in schools,” Los Angeles Times September 10, 2019: https://www.latimes.com/california/story/2019-09-10/school-suspension-willful-defiance-california.
[3] Jessica Oh, “Child with autism locked out of school,” report on Kiro 7 television in Seattle, January 23, 2019: https://www.kiro7.com/news/local/child-with-autism-locked-out-of-school/908564250/. This incident was widely reported elsewhere.
[4] “Teacher files charges against 8-year-old student who hit her”, report on KQRE TV, April 14, 2018: https://abc13.com/education/teacher-files-charges-against-8-year-old-student-who-hit-her/3344462/. The incident was also widely reported.
[5] David M. Perry, “America Keeps Criminalizing Autistic Children,” Pacific Standard June 12, 2017: https://psmag.com/education/america-keeps-criminalizing-autistic-children.
[6] Agent Smirnoff, in the “Is Suspension Really a Punishment?” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=194004.
[7] dragoncat, in the “Things You Hated About School” discussion on the Autism Forums website (October 28, 2017): https://www.autismforums.com/threads/things-you-hated-about-school.22361/#post-443119. It is worth noting that this topic elicited four pages of responses.
[8] tlc, in the “Things You Hated About School” discussion on the Autism Forums website (March 30, 2018): https://www.autismforums.com/threads/things-you-hated-about-school.22361/#post-443119.
[9] SchrodingersMeerkat, in the “Things You Hated About School” discussion on the Autism Forums website (October 27, 2017): https://www.autismforums.com/threads/things-you-hated-about-school.22361/#post-443119.
[10] Aristophanes, in the “Why School Sucked” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?f=3&t=357585&start=60.
[11] The Musings of the Lost, in the “Why School Sucked” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?f=3&t=357585&start=60.
[12] Elizabeth Rosner and Chris Perez, “Autistic student suspended for standing up to bullies, $5M suit claims,” New York Post August 17, 2018: https://nypost.com/2018/08/17/autistic-student-suspended-for-standing-up-to-bullies-5m-suit-claims/.
[13] Max Londberg, “Suit: Winton Woods Officials Allowed Bullying of Student with ‘Significant Autism’ for Years,” Cincinnati Enquirer August 19, 2019: https://www.cincinnati.com/story/news/2019/08/19/suit-winton-woods-officials-allowed-bullying-student-autism/2054763001/.
[14] Agent Smirnoff, in the “Is Suspension Really a Punishment?” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=194004.
[15] deog, in the “I’m So Done!!!! discussion on the Autism Forums website: https://www.autismforums.com/threads/im-so-done.27361/#post-552380.
[16] Ed Williams, “Criminalizing Disability,” Searchlight New Mexico, May 7, 2019:
[17] MagicMeerkat, in the “Is Suspension Really a Punishment?” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=194004.
The reality of school discipline is more complicated than the law would suggest. To begin with, students with disabilities, as a group, are much more likely to be suspended from school than students without disabilities. A 2018 report, “School Climate and Safety Report” published by the Department of Education’s Office for Civil Rights found that even though only 12% of all students in the U.S. have disabilities, 26% of those subject to out-of-school suspension and 24% of those expelled have disabilities. In other words, students with disabilities are being suspended and expelled at roughly twice the rate of other students.[1] Students of color, especially African Americans, face even higher rates of disciplinary removal from school. Among students with identified disabilities, roughly 9% of whites and Hispanics were suspended in any given year, while 21% of Native Americans and 23% of black students were suspended.[2]
If we look specifically at autistic students, we should remember, first of all, that there are still many autistic students who have not been formally diagnosed. Unless they happen to have another, recognized, disability, they are not protected under IDEA and may be suspended or expelled because of behavior that would be considered a “manifestation” of autism in a diagnosed student. Since girls and minority students are much less likely than white male students to be diagnosed with autism, they are also more likely to lack IDEA protections against excessive suspensions and expulsions.[3]
Relatively little research has focused on children with an actual autism diagnosis, but a 2018 report from the Center for American Progress states that pre-school children diagnosed with autism are ten times more likely to be suspended or expelled than their “typically developing” peers.[4] A 2017 research study analyzes data for older children in the state of Maryland, from 2004 to 2015. The authors found that about 3.3% of both white and African American students with autism were suspended during this period. White autistic students were much more likely that non-disabled white students to be suspended, while autistic African American students were less likely to be suspended than non-disabled African American students.[5]
The fact that both groups of autistic students this study were suspended at the same rate suggests that both groups were treated equally. But bear in mind that African Americans are much less likely than whites to be diagnosed with autism and may instead be diagnosed with intellectual or emotional disabilities. In the same study, 10.5% of African American students with intellectual disability had been suspended at least once, compared to only 7.3% of white students with ID. If we assume that at least some of those diagnosed with ID also have autism, or have been misdiagnosed with ID instead of autism, then it looks like the rate of suspension for African American students with autism probably is higher than it is for whites.[6] The authors provided no data comparing students with autism and students with “emotional disturbance,” but African-American children with autism are very frequently misdiagnosed with ED, and students with ED are the most likely of all disability groups to be suspended or expelled. It seems plausible, then, to assume that African Americans and members of other minority groups with autism are at higher risk of being removed from school than white students with autism.
There is also the question of how often autistic students are suspended. Sometimes schools suspend children “unofficially,” by saying they are having a “bad day” and would be better off at home. They call the parents to pick the child up, but do not register this event as a suspension.[7] This allows the school to get around federal regulations that limit the number of suspensions that can be imposed on students with disabilities. As a result, suspensions from school can occur with stunning frequency. A report on television news in Washington state looked at statewide rates of suspension and expulsion for students with disabilities, with results similar to those described above. The main focus of the report, a young autistic man named Austin, was suspended for more than 100 days during his time in middle school (far, far beyond the 10 days a year allowed under IDEA and federal regulations). Another young autistic man in Washington state was officially suspended for 24 days, and unofficially for 45 days, for a total of 69 days out of the classroom during a single school year.[8] While these are extreme cases, it is not at all unusual for schools to use unofficial removals to evade the limits set on suspensions by law.
Repeated removals from school obviously limit children’s educational opportunities, leading them to fall farther and farther behind other students academically. But beyond that, repeated suspensions and expulsion from school have devastating emotional effects on children. As Austin, the young man mentioned in the last paragraph, put it: “I felt like I was one of the worst kids that ever was because they were just constantly sending me home.” [9] Disciplinary removal may alienate children from schools which they see as simply not wanting them. And so, children repeatedly suspended and expelled are much more likely to drop out of school altogether.[10] “As a teen, I was expelled from the entire county school system and my parents had to find a private school willing to take me. At sixteen, I dropped out of school altogether,” recalls one autistic adult.[11]
Finally, repeated suspensions and expulsion promote entry into the “school-to-prison pipeline,” especially, but certainly not exclusively, for young African American males.[12] School “resource officers” (i.e., armed police officers) often intervene in disturbances at school, all too often in inappropriate ways. They may end up handcuffing and even bringing to jail autistic students seen as “disruptive”—setting up a vicious cycle in which these students see authorities as the enemy and act out accordingly. In addition, many suspended and expelled students spend their days unsupervised at home or on the streets, where they may engage in a variety of criminal activities, eventually leading to arrest and imprisonment.
As research has repeatedly shown, disciplinary removal from school has no positive impact at all on student behavior. On the contrary, it is more likely to worsen that behavior.[13] As a result, the official policy of many school districts is that suspension and expulsion should only be used when necessary to protect other students and staff, or when guns or drugs are involved. In practice, however, these disciplinary techniques are often used to “punish” students who skip classes, fail to complete their homework, or talk back to their teachers. As we’ll see in the next post, autistic students who receive these punishments often view them as senseless, and even malicious (a way for “mean teachers” to get back at them).
[1] Office of Civil Rights, Department of Education, “School Climate and Safety,” 2018 report based on the 2015-16 Civil Rights Data Collection: https://www2.ed.gov/about/offices/list/ocr/docs/school-climate-and-safety.pdf. The disparity begins in preschool: Cristina Novoa and Rasheed Malik, “Suspensions Are Not Support: The Disciplining of Preschoolers With Disabilities” (Report from the Center for American Progress, January17, 2018: https://www.americanprogress.org/issues/early-childhood/reports/2018/01/17/445041/suspensions-not-support/. See also [No author], “Washington special needs students disciplined more than twice as often as general education peers,” report on King5 television news: https://www.king5.com/article/news/local/washington-special-needs-students-disciplined-more-than-twice-as-often-as-general-education-peers/281-608161669.
[2] Nicholas Gage, et al., “National Analysis of the Disciplinary Exclusion of Black Students with and without Disabilities,” Journal of Child and Family Studies 28:7 (2019), 1754-64.
[3] Office of Special Education and Rehabilitative Services, “Racial and Ethnic Disparities in Special Education: A Multi-Year Disproportionality Analysis by State, Analysis Category, and Race/Ethnicity” (2016), pp. 23-24: https://www2.ed.gov/programs/osepidea/618-data/LEA-racial-ethnic-disparities-tables/index.html.
[4] Cristina Novoa and Rasheed Malik, “Suspensions Are Not Support: The Disciplining of Preschoolers With Disabilities” (Report from the Center for American Progress, January17, 2018: https://www.americanprogress.org/issues/early-childhood/reports/2018/01/17/445041/suspensions-not-support/.
[5] M. Krezmien, et al., “Suspension Rates of Students with Autism or Intellectual Disabilities in Maryland from 2004 to 2015,” Journal of Intellectual Disability 61:11 (November, 2017), 1011-1020
[6] M. Krezmien, et al., “Suspension Rates of Students with Autism or Intellectual Disabilities in Maryland from 2004 to 2015,” Journal of Intellectual Disability 61:11 (November, 2017), 1011-1020.
[7] Robert Tudisco, “Can the School Give my Child With an IEP ‘Unofficial” Suspensions?’”, on the Understood.org website: https://www.understood.org/en/school-learning/your-childs-rights/basics-about-childs-rights/can-the-school-give-my-child-with-an-iep-unofficial-suspensions; see also Cristina Novoa and Rasheed Malik, “Suspensions Are Not Support: The Disciplining of Preschoolers With Disabilities” (Report from the Center for American Progress, January17, 2018: https://www.americanprogress.org/issues/early-childhood/reports/2018/01/17/445041/suspensions-not-support/.
[8] Report from the Washington State ACLU, “Pushed out; kicked out: Stories from families with special education students in Washington”: https://www.aclu-wa.org/pages/pushed-out-kicked-out-stories-families-special-education-students-washington.
[9] [No author], “Washington special needs students disciplined more than twice as often as general education peers,” report on King5 television news: https://www.king5.com/article/news/local/washington-special-needs-students-disciplined-more-than-twice-as-often-as-general-education-peers/281-608161669.
[10] Amity Noltemeyer, Rose Marie Ward, and Caven Mcloughlin, “Relationship Between School Suspension and Student Outcomes: A Meta-Analysis,” School Psychology Review 44 (2015), 224-40; Susan Faircloth, “Factors Impacting the Graduation and Dropout Rates of American Indian Males with Disabilities,” in Susan Faircloth, Ivory Toldson, and Robert Lucio, eds., Decreasing Dropout Rates for Minority Male Youth with Disabilities from Culturally and Ethnically Diverse Backgrounds (Clemson, SC: National Dropout Prevention Center for Students with Disabilities, 2014), pp. 8-9.
[11] Max [formerly known as Sparrow Rose] Jones, No You Don’t: Essays from an Unstrange Mind (Self-published, 2013), p. 51
[12] Abigail Novak, “The association between experiences of exclusionary discipline and justice system contact: A systematic review,” Aggression and Violent Behavior 40 (2018), 73-82; Amity L. Noltemeyer, Rose Marie Ward, and Caven Mcloughlin, “Relationship Between School Suspension and Student Outcomes: A Meta-Analysis,” School Psychology Review 44: 2, (June, 2015): 224-24; A.E. Cuellar and S. Markowitz, “School Suspension and the School-to-Prison Pipeline,” International Review of Law and Economics 43 (2015), 98-106.
[13] Ambra Green, Deanna Maynard, and Sondra Stegenga, “Common misconceptions of suspension: Ideas and alternatives for school leaders,” Psychology in the Schools 55:4 (April, 2018), 419-28.
For a student with autism, diagnosis is always a double-edged sword. On the one hand, an official diagnosis may result in access to services such as ABA (for good or ill), speech therapy, occupational therapy, physical therapy, etc.; and for accommodations at school such as classroom aides, extended time on tests, access to quiet rooms, etc. It offers some legal protections against suspension or expulsion from school. At the same time, autism obviously carries a profound stigma in American society. In school, the child who has an autism diagnosis is often regarded by administrators, teachers and staff as different and potentially dangerous. Non-verbal autistics are usually assigned to special education classrooms, or even separate schools, where they usually receive only a limited academic education, regardless of their actual intelligence and potential. And despite privacy rules, autistic children’s diagnoses far too often become known to their fellow students, resulting in bullying.
Many parents are aware of these problems, and struggle with deciding what is best for their child, or sometimes what is best for the parents themselves, or for the rest of the child’s family. Should they seek a diagnosis or not? And if they do receive a diagnosis from a doctor or psychologist, should they share it with the school? Does their child’s need for services, accommodations, and protection outweigh the potential impact of stigma? But parental anxiety about stigma is only one of many factors affecting whether a child is diagnosed. Sex, socio-economic status, race/ethnicity, immigrant status, language and cultural differences, and even the place where a child lives, all play a role in determining who will be diagnosed and who will not.
“Four times as many boys as girls have autism.” This has been repeated so often that it may be treated as a simple fact.[1] But the correct formulation should actually be that “four times as many boys as girls receive autism diagnoses.” We simply don’t know how many girls have autism. What we do know now, though, is that many girls on the spectrum remain undiagnosed because parents, psychologists and pediatricians don’t know what autism looks like in girls.[2] For example: parents and care-givers are more likely to become concerned and more likely to seek a professional diagnosis when children engage in “externalizing” (aggressive) behaviors. But because girls are less likely than boys to behave aggressively, parents may not realize the extent to which they are “different” from other children, and as a result, their daughters may not be tested for autism until they reach school age or even beyond.[3] In addition, most parents and professionals still don’t realize that autistic girls are better at “camouflaging” or “passing” than autistic boys, because they are likely to imitate the behavior of those around them (even if they don’t understand the reasons for that behavior), whereas boys are more likely to simply withdraw from social interactions altogether.[4] The standard diagnostic criteria for autism present additional problems.[5] Engagement in repetitive behaviors has long been a key criterion. But autistic girls are less likely to engage in repetitive behaviors than boys—and even when they do, these behaviors may appear at first glance to be normal for young females. Autistic girls may collect dolls or devote lots of time to coloring pictures. What parents and the professional responsible for diagnosis often don’t realize is that these girls are not playing with the dolls, but rather lining them up according to the color of their dresses; they are filling their coloring books with intricate patterns that have little to do with what’s going on in the pictures.[6] As a result of these and other factors, girls are generally diagnosed at a later age than boys, and may remain undiagnosed into adulthood, even when they are quite severely affected by autism.”[7]
Coming from a poor family also makes it less likely that an autistic child will receive a diagnosis. As one study found: “ . . . the proportion of children in poverty receiving services or supplementary income because of ASD was lower than the proportion expected on the basis of estimates of the prevalence of ASD in the general population.”[8] While autism diagnoses have increased rapidly in recent years, the increase has been much lower for the poor than for other income groups.[9] This is almost certainly because access to health care (and therefore medical sources of diagnosis) is much more limited for the poor in the United States, than for the middle and upper class. In countries with universal health care, such as Sweden and France, such differences do not exist.[10]
Children of color are less likely than white kids to be diagnosed with autism. They are also more likely than white kids to be diagnosed late (after they have started school), or simply mis-diagnosed as having emotional or behavioral problems. The time from when parents become concerned to when the child receives an official diagnosis (if they ever do) is significantly longer for children of color than for whites. Even when socio-economic status and levels of parental education are factored in, these disparities remain. Among children of color, those most likely to be diagnosed are those with lower (or apparently lower) IQs, while those with the “milder phenotype” of autism (what used to be called Aspergers syndrome) remain under-identified. Fewer children of color receive early intervention services (such as ABA or TEACCH) for autism, and when they do receive services, it is generally for fewer hours a week. Once they reach school age, they are more likely than white kids to be identified as having “behavior problems” and are over-represented in school services targeting behavior (as opposed to social skills or learning techniques). [11] High levels of poverty in these communities, as well as prejudice, contribute to these disparities. Racial disparities in diagnosis and services affect all non-white children, but some groups—especially Hispanics and African-Americans—are more seriously affected than others.
Immigrant families may be poor and they may belong to racial or ethnic minorities, but they also face problems in receiving accurate diagnoses for their children simply because they are immigrants. Language differences can be a significant barrier, because so many of the diagnostic tools for autism are based on instruments originally written in English, and perhaps unavailable in, or poorly translated into, other languages. (Some immigrants may also be unable to read or write.) Lack of familiarity with American medical and educational systems may play a role, as do those systems lack of familiarity with other cultures. For example: many American practitioners view a child who is unwilling to make eye contact with them as potentially autistic. However, in many immigrant communities, children are taught that it is rude to look directly into an adult’s eyes. Some of the testing used to detect autism looks at children’s interactions with toys—but immigrant children may have never seen the toys presented to them, and may have no idea how to play with them “appropriately.”[12] It is also possible that cultural differences may shape an immigrant family’s decision to seek a diagnosis. One study found that Korean-American families in New York City were often reluctant to seek diagnosis (or even discuss autism with others), because of the shame having a disabled child might bring on their family.[13] This, and other similar studies, must be treated with caution, however, because they tend to be based on interviews with a very small sample of people, who may not be representative of the group as a whole. However, it is certainly possible that cultural differences play a role in immigrant families’ decision to seek a diagnosis.
Finally, there is the question of whether families who want a diagnosis and who have enough resources to get one can find someone to provide it. Other things (wealth, English language competency, etc.) being equal, it is not very difficult to find a doctor or psychologist able to diagnose autism in most of America’s big cities. However, one recent, if somewhat controversial, study, has identified a multitude of “diagnosis deserts,” especially in rural or thinly populated parts of the United States. 80% of U.S. counties have no autism diagnostic clinics.[14] Families from these areas have to either travel long distances to find a qualified diagnostician, or wait until their children are old enough to receive diagnoses and services from local school systems.
Disparities in the ability to get an autism diagnosis are significant, and they have significant implications as well. In my next post I will concentrate on just one issue—the impact of having/not having an autism diagnosis on school discipline.
[1] E.g., “What is Autism Spectrum Disorder,” Center for Disease Control and Prevention website (current): https://www.cdc.gov/ncbddd/autism/facts.html; Deane Morrison, “Why Autism Strikes Mostly Boys,” University of Minnesota’s Office of the Vice-President for Research’s website (November 27, 1917): https://research.umn.edu/inquiry/post/why-autism-strikes-mostly-boys;
[2] Sylvie Goldman, “Sex, Gender, and the Diagnosis of Autism—A Biosocial View of the Male Preponderance,” Research in Autism Spectrum Disorders 7 (2013), 675-679; Lauren Little, et al., “Do early caregiver concerns differ for girls with autism spectrum disorders?” Autism: The International Journal of Research and Practice 21 (2017), 728-32;
[3] Jorieke Duvocot, et al., “Factors Influencing the Probability of a Diagnosis of Autism Spectrum Disorder in Girls versus Boys,” Autism: The International Journal of Research and Practice 21 (2017), 646-58.
[4] Rachel Hiller, Robyn Young, and Nathan Weber, “Sex Differences in Pre-Diagnosis Concerns for Children Later Diagnosed with Autism Spectrum Disorder,” Autism: The International Journal of Research and Practice 20 (2016), 75-84.
[5] Although this view remains somewhat controversial. Compare two recent articles in Spectrum News: Nicholette Zeliadt, “Diagnostic Tests Miss Autism Features in Girls” (May 13, 2017): https://www.spectrumnews.org/news/diagnostic-tests-miss-autism-features-girls/; and Hannah Furfaro, “Diagnostic tests don’t miss girls with autism, study suggests”: https://www.spectrumnews.org/news/diagnostic-tests-dont-miss-girls-autism-study-suggests/. It is worth noting, however, that the study described in the second article looked at girls already diagnosed with autism—which undermines its main point.
[6] Rachel Hiller, Robyn Young. and Nathan Weber, “Sex Differences in Autism Spectrum Disorder Based on DSM-5: Evidence from Clinician and Teacher Reporting,” Journal of Abnormal Child Psychology 42 (2014), 1381–1393.
[7] Rachel Hiller, Robyn Young, and Nathan Weber, “Sex Differences in Pre-Diagnosis Concerns for Children Later Diagnosed with Autism Spectrum Disorder,” Autism: The International Journal of Research and Practice 20 (2016), 75-84.
[8] Maureen Durkin, et al., “Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities,” American Journal of Public Health 107:11 (2017), 1818-1826. See also Pauline Thomas, et al., “The Association of Autism Diagnosis with Socioeconomic Status,” Autism: The International Journal of Research and Practice 16:2 (March, 2012), 201-13.
[9] C.D. Pulcini, et al., “Poverty and Trends in Three Chronic Disorders,” Pediatrics 139:3 (March, 2017).
[10] Maureen Durkin, et al., “Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities,” American Journal of Public Health 107:11 (2017), 1818-1826.
[11] Amber Angell, et al., “A Review of Diagnosis and Service Disparities Among Children with Autism from Racial or Ethnic Minority Groups in the United States,” International Review of Research in Developmental Disabilities 55 (2018), 145-80. See also Jason Travers and Michael Krezmien, “Racial Disparities in Autism Identification in the United States During 2014,” Exceptional Children 84 (2018), 403-19. Travers and Kremien pay special attention to differences between states in racial disparities; these differences can be quite significant.
[12] Emily Sohn, “Why Autism Seems to Cluster in Some Immigrant Groups,” Spectrum News, 11/29/17.
[13] Christina Kang-Yi, et al., “Influence of Community-Level Cultural Beliefs about Autism on Families’ and Professionals’ Care for Children,” Transcultural Psychiatry 55 (2018), 623-47. But compare the following three studies, each of which comes to a different conclusion about Mexican immigrant mothers’ attitudes towards autism: Elizabeth Ijalba, “Hispanic Immigrant Mothers of Young Children With Autism Spectrum Disorders: How Do They Understand and Cope With Autism?” American Journal of Speech-Language Pathology 25 (2016), 200-13; Shana Cohen and Jessica Miguel, “ Amor and Social Stigma: ASD Beliefs Among Immigrant Mexican Parents,” Journal of Autism and Developmental Disorders 48 (2018), 1995-2009; Brenda Barrio, et al., “The Impact of Culture on Parental Perceptions about Autism Spectrum Disorders: Striving for Culturally Competent Practices,” Multicultural Learning and Teaching 14 (2019), 1-9.
[14] Hannah Furfaro, “New Autism Map Points to Diagnostic Deserts in United States,” Spectrum News, 8/28/19:
I have been admiring this young woman’s work to stop climate change for several months now. Only yesterday did I learn that she was autistic. Here are her words of wisdom to the British Parliament:
Trigger warning: discussion of suicide.
Once again, I haven’t posted for a while. This is because Deeply Beloved Daughter is doing badly.
She’s in her senior year of university now, and very successful academically, but the last six months have been a total disaster emotionally.
She was sexually assaulted (to her credit, she pressed charges and the guy is now in jail, but it was super hard). Her sister developed a life-threatening illness, which really scared her. Her grandmother, whom she felt very close to, died. And one of her best friends from high school committed suicide. One trauma after another. And all through this, she maintained her mask of being “normal”/neurotypical (her choice, not her parents) and worked hard at school But the additional pressure of final exams did her in. She began self-harming and talked about suicide.
So here she is, in her third week on a psychiatric unit where no one understands anything about autism (we had to explain meltdowns to them), where she can’t escape the fluorescent lights or the noise, where the staff are constantly criticizing her, and where she’s being heavily drugged with useless and potentially very harmful stuff. Two days after Christmas she goes before a judge who will probably commit her to a state hospital. (Yes we have lawyers and expert opinions, etc., but we are not very hopeful).
Those of you who pray, please pray for us. Everyone else: fight like hell for better psychiatric care for autistic people.
that Bloody Cat 