Tag Archives: Autism Acceptance

Interested in My New Book?

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!

Suspension and Expulsion: The Experience

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.

Suspension and Expulsion: The Data

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.

Diagnosis and Discipline

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:

Greta Thunberg’s Speech to Parliament

 

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:

“My name is Greta Thunberg. I am 16 years old. I come from Sweden. And I speak on behalf of future generations.

I know many of you don’t want to listen to us – you say we are just children. But we’re only repeating the message of the united climate science.

Many of you appear concerned that we are wasting valuable lesson time, but I assure you we will go back to school the moment you start listening to science and give us a future. Is that really too much to ask?

In the year 2030 I will be 26 years old. My little sister Beata will be 23. Just like many of your own children or grandchildren. That is a great age, we have been told. When you have all of your life ahead of you. But I am not so sure it will be that great for us.

I was fortunate to be born in a time and place where everyone told us to dream big; I could become whatever I wanted to. I could live wherever I wanted to. People like me had everything we needed and more. Things our grandparents could not even dream of. We had everything we could ever wish for and yet now we may have nothing.

Hard Times in the Midwest

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.

 

 

 

 

Reactive “Aggression”: What Autistic People Have to Say

Scientists who study large populations have uncovered several risk factors for aggressive behavior in autistic children—lack of sleep, poor social and communication skills, irritability, etc. (see my last post).  In contrast, autistic people are less likely to focus on general risk factors than to describe their own personal experiences during childhood:  the specific situations in which they threatened or injured others, and the way they felt at the time.  Nevertheless, there are many commonalities among their experiences, commonalities which do not always correspond with what scientists have described.[1]  For example, while scientists tend to assume that all aggression is intentional, many autistic people report having engaged during childhood in unintentional aggression.  One type of unintentional aggression is what I call reactive “aggression”—and I am using quotation marks because I am not sure that what is described below truly qualifies as aggression at all.

 

Reactive “Aggression”

I have an instinctive fear of snakes.  It’s not a phobia.  If I have time to think about it, I can talk about and look at snakes.  I even petted a snake once, to show my kids that reptiles aren’t dangerous.  But if I am out walking and a harmless little garter snake wiggles across the sidewalk in front of me, I immediately find myself jumping a foot in the air and then running away.  And if—God forbid—a snake were to fall out of a tree onto my shoulder, the poor thing would get whacked hard to get it off me, even though I have no conscious intention of hurting it. My reaction is purely instinctive.

Many autistic people report a similar response to being touched by other people, which they may find intensely painful: “The pain I feel when someone touches me is like feeling needles that sting my flesh.”[2]  Or if touch is not exactly painful, it may still be intolerable in other ways:

I don’t feel pain but I cannot tolerate pressure, which is what I feel physically when touched, to the point where my brain perceives being touched as being crushed, and transmits a threat response. I also feel a complete sense of psychological invasion as others have said, and I get an immediate irresistible sense of nononono that I have to get away from. Can’t abide being touched.[3]

Averse to touch, autistic people may be able to avoid lashing out if they get some advance warning.  But if they are taken by surprise, they respond instinctively, in the same way I would respond to a snake suddenly landing on me:

 

i have often hit people who have touched me without warning, particularly if they touch me from behind, a sharp elbow flies backwards. however this is not advisable as people take offense to it & some hit back! it is a reflex reaction for me, i have no concious control over it.[4]

 

 

It is common for autistic students to hit out wildly when they get touched, and schools often interpret these reactive behaviors as aggressive.  The result is punishment, usually in the form of suspension or (for repeated incidents) expulsion:

 

I got suspended for hitting kids when they got too close (I can feel people’s energy or “chi” when I get close to them or they get close to me and it is physicaly painful) [5]

However, autistic writers often remember these childhood reactions as uncontrollable:

Until about the age of 12 or 13 I’d regularly scream and hit people for touching me. Not so bad these days but I still hate unwanted touch. When I was younger kids at school thought it was hilarious to poke me until I lost my temper. Being poked is extremely painful, I’m very sensitive to touch. I try telling people this and they think I’m exaggerating.[6]

Did any of you have a problem as a kid where if a kid hurt you (even unintentionally), you would hit them without thinking? I used to get suspended multiple times year for punching other kids because they pinched me between a desk or bumped me while playing soccer. It was a reflex I was unable to control until I was older.[7]

As both of the last quotations indicate, some children learn to control their reactions as they grow older.  However, even for adults this may require a tremendous amount of effort:

 

if someone touches my face, my cheek especially, i can barely control myself from hitting that person. being stuck in a slow moving crowd, i feel trapped and want to scream my lungs out. i feel like pushing people aside violently, i don’t do it because it’s wrong, but i slam my fist in an open palm and growl like an animal. i go crazy and no one notices.[8]

 

Children in general have a much more limited ability to maintain control over their reflexes.

 

 

The reflexive childhood “aggressor” usually does not intend to hurt anyone, knows perfectly well that hitting others is wrong, and after the fact often feels very badly about the way they have behaved:

When I was a kid-I was at a friends house when a friend of his . . . came up from behind and grabbed me-now I do not like to be touched or grabbed from behind-now I know its because of AS-I did not know it was him and I turned around and punched who ever it was in the mouth and it was him-he ran crying and I felt so bad that I hurt this boy who was just playing and meant no harm but I thought I was being attacked and hit this poor kid-I felt really bad,so bad I pledged I would never hurt anyone for any reason ever again and I still live up to that to this day.It still upsets me to think about the incident and the thought of hurting an innocent,harmless person.[9]

Should reactions which are instinctive, difficult to control, engaged in with no intent to harm, and often deeply regretted afterwards be consider “aggression”?  I would have to say “No.”  Certainly there will be a need for behavior interventions, to help these kids learn not to react so strongly to unexpected touch, but punishment seems inappropriate in such cases.

 

 

 

[1] In what follows, I will be drawing primarily on posts from the Wrong Planet website, which has thousands of autistic subscribers.  Like other quick posts on social media sites, these may contain errors of spelling and grammar.  This is simply the nature of such posts, which are usually composed in a hurry.

[2] Kairi96, in in the “I Feel Pain When Other People Touch Me” discussion:

http://wrongplanet.net/forums/viewtopic.php?t=219950.

[3] C2V, in the “I Feel Pain When Other People Touch Me” discussion:

http://wrongplanet.net/forums/viewtopic.php?t=219950.

[4] Sally, in the “About Hating Touch..” discussion: http://wrongplanet.net/forums/viewtopic.php?t=48437.

[5] PunkyKat, in the “Aspies—Ever Get Suspended/Expeled” discussion:

http://wrongplanet.net/forums/viewtopic.php?f=14&t=83101.

[6] Squirsh, in the “Do You Get Irritated When People Touch You?” discussion: http://wrongplanet.net/forums/viewtopic.php?t=169499.

[7] bluecurry, in the “What Were You Like in Elementary School” discussion:  https://wrongplanet.net/forums/viewtopic.php?t=226220.

[8] Felinesaresuperior, in the “Odd Things That Make You Feel Irrationally Angry” discussion:

https://wrongplanet.net/forums/viewtopic.php?t=189358.

[9] Radiofixr, in the “Did Anyone Else LIKE Being Bullied?” discussion: http://wrongplanet.net/forums/viewtopic.php?t=129369.

Aggression Against Self and Others: What the Scientists Have to Say

Autistic students have, in the past, broken their teacher’s arms, knocked out their teeth, and even given them concussions.  There have been incidents in which students have banged their own heads against walls, scratched their arms until they bled, and bitten their fingers.  There have also been incidents in which their classmates have been injured.  So schools are rightly concerned about autistic kids engaging in behaviors—self-injury, punching, biting, and kicking—that are potentially dangerous to themselves or others.

Nevertheless, schools cannot treat every autistic child as a time-bomb, ready to explode at any moment.  There are certainly some students on the autism spectrum who must be treated with great care, but there are also many who have outbursts only under extreme circumstances, and still others who pose no threat at all.  Unfortunately, the research on the prevalence of aggression in this population remains limited, and what exists has various weaknesses.  Nevertheless, it is worth reviewing, because it shows that “the violent autistic child” is not nearly as common as the general public, as well as many teachers and school administrators, assume.

Estimates of “self-injurious behavior” (SIB), for example, have been skewed by the populations sampled.  One group of researchers looked at 250 children and teens with autism who were enrolled in genetic studies at the Hospital for Sick Children in Toronto, Canada.  They found that 52.3% had engaged in SIB at some point in their life.[1]  This study was often cited in the years after its publication in 2012, and the idea that more than half of autistic kids injured themselves became widely accepted.  In 2016, however, a different group of scholars published the results of their research on more than 8,000 autistic children tracked by the Autism and Developmental Disabilities Monitoring Network in the United States.  They pointed out that the 2012 study, conducted in a hospital, had “over-sampled” kids with challenging behaviors and major impairments.  The 2016 study placed the percentage of autistic kids who self-injured at around 27.7%.  This is still a significant number, but it is only about half that of the earlier, widely-cited study.[2]

Research on aggression against other people has been complicated by disagreements about terminology (the authors of one study noted that other researchers were reluctant even to use the term “aggression”[3]) and weakened by failure to distinguish clearly between the prevalence and persistence of different forms of aggression.  One study, based on a fairly large sample of children, concluded that 68% had at one time or another demonstrated aggression against their care-givers, and 49% had at one time or another been aggressive towards non-caregivers.[4]  It should be noted, however, that these figures covered the children’s entire lifetime, including the period when they were toddlers (who generally tend to do a fair amount of hitting and kicking, even if they are neurotypical.)  When the researchers examined behavior at the time of the study, they found that 56% of the autistic children sampled were “currently” aggressive towards their caregivers, while 32% were aggressive towards non-caregivers.

The authors of this study focused on these general numbers, which they claimed showed that the prevalence of aggression among autistic children was “high.”  However, when they broke down their figures still further, to look at the prevalence of different kinds of violence, it turns out that a much smaller number (35.4% of all the kids in the study) were currently engaged in what the researchers called “definite aggression”—hitting, kicking, punching, etc.  The other children in the “aggressive” category (roughly 25% of the total) were currently practicing only “mild aggression,” defined as playing roughly, verbally threatening other people, or lashing out after being provoked.  Most importantly, 39.8% of the sample showed no aggressive behavior at all.   lt turns out, then, that of the autistic kids in this study, more were currently avoiding all aggressive behaviors than were involved in “definite aggression.”  If we combine the non-aggressive and mildly aggressive categories, it turns out that 65% of the sample studied actually seem pretty similar to “normal” kids.  However, in practice it is quite difficult to know how autistic aggression compares with neurotypical aggression, since studies on aggression in autism generally involve no control group of non-autistic children.[5]

A number of researchers have examined the “risk factors” for self-injurious and aggressive behaviors.  In terms of SIB, one study found that abnormal sensory processing was the most important predictor of self-injury[6]  Other researchers conclude that SIB is particularly common not only in those with abnormal sensory processing, but also those with regressive forms of autism, irritability, hyper-activity, mood issues, sleep issues, and severe communication limitations.[7]  There are some indications that SIB may decline as communication improves over time.[8]  Factors associated with aggression against others include youth (aggressive behavior declines with age among autistic as well as neurotypical children), social and communication problems, higher levels of “repetitive behaviors” (stimming), and—oddly enough—higher family income.[9]  A very high percentage of autistic children and adolescents (50-80%) suffer from sleep problems.  One recent study found a particularly significant correlation between lack of sleep and various problem behaviors, including hyperactivity, irritability, and physical aggression in autistic youth.[10]

The scientific evidence, then, suggests that a significant minority of young people with autism will engage in self-injurious behaviors (27.7%) and significant aggression against others (35.4%).  (A further area of concern is “meltdown” behavior, which I will address in another post.)  According to scientists, the individuals who engage in these behaviors tend to be younger children, those who have gone through early regression, those who are irritable and hyperactive due to poor sleep, those unable to communicate in other ways, and those with the kinds of sensory processing that make the world unpredictable and often painful.  Teachers and administrators would do well to consider and try to mitigate these factors before they condemn autistic children who “act out.”

 

 

 

[1] Emma Duerden, Hannah Oatley, Kathleen Mak-Fan, et al., “Risk Factors Associated with Self-Injurious Behaviors in Children and Adolescents with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 42 (2012), 2460-70.

[2] Gnakub Soke, Steven Rosenberg, Richard Hamman, et al., “Brief Report:  Prevalence of Self-Injurious Behaviors among Children with Autism Spectrum Disorder:  A Population-Based Study,” Journal of Autism and Developmental Disorders 46 (2016), 3607-14.

[3] Cristan Farmer and Michael Aman, “Aggressive Behavior in a Sample of Children with Autism Spectrum Disorders,” Research in Autism Spectrum Disorders 5 (2011), 317-23.

[4] Stephen Kanne and Micah Mazurek, “Aggression in Children and Adolescents with ASD:  Prevalence and Risk Factors,” Journal of Autism and Developmental Disorders 41 (2011), 926-37.  The sample was made up of children enrolled in a multi-university research study on autism, which—like the hospital study mentioned above—probably “oversampled” those with challenging behaviors.

[5] There are many studies of aggressive behavior among children who have suffered trauma, who have been raised in poverty, etc.  I have found it difficult to find estimates for aggression among neurotypical children as a whole.  And in any case, different measures are used in studies on autistic and studies on non-autistic children, which makes comparisons virtually impossible.

[6] Emma Duerden, Hannah Oatley, Kathleen Mak-Fan, et al., “Risk Factors Associated with Self-Injurious Behaviors in Children and Adolescents with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 42 (2012), 2460-70

[7] G. Soke, S. Rosenberg, R. Hamman, et al., “Factors Associated with Self-Injurious Behaviors in Children with Autism Spectrum Disorders:  Findings from Two Large National Samples,” Journal of Autism and Developmental Disorders 47 (2017), 285-96;

[8] Jeffrey Danforth, “Self-Injurious Behavior (SIB),” in Fred Volkmar, Encyclopedia of Autism Spectrum Disorders (New York:  Springer, 2013), 110-39.

[9]  Stephen Kanne and Micah Mazurek, “Aggression in Children and Adolescents with ASD:  Prevalence and Risk Factors,” Journal of Autism and Developmental Disorders 41 (2011), 926-37.  One might speculate that aggressive behaviors are attributed to factors other than autism in children with lower family incomes.

[10] Micah Mazurek and Kristin Sohl, “Sleep and Behavioral Problems in Children with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 46 (2016), 1906-15.

FBAs and BIPs

Teachers often want to move autistic students whose behavior they find disruptive out of their ordinary classrooms and into special education classrooms, or classrooms just for students with autism in the same school, or even into separate schools.  These segregated environments do offer smaller class size and more adult supervision.   However, they almost never provide the same academic opportunities as mainstream classrooms—separate is far from equal.  This is why the Individuals with Disabilities Education Act (IDEA) requires that students with autism be taught in the least restrictive environment possible for them.  And this is why teachers and administrators must take certain steps before changing a student’s placement from a less restrictive to a more restrictive environment.

 

The 1997 and 2004 re-authorizations of IDEA require schools to at least attempt to resolve the problem, by working to change the disruptive behavior, before a student can be removed from the mainstream classroom.  Schools must conduct a Functional Behavioral Assessment (FBA) of the student, to get a better idea of the reasons for the unwanted behaviors, and then use that information to develop and implement a Behavior Intervention Plan (BIP), designed to minimize or eliminate those behaviors.[1]

 

In FBA, data is collected on when and where the target behavior occurs, what its “antecedents” were and what its “consequences” are.  Various instruments are used to track behaviors and what happened just before and after in a systematic way; interviews are also conducted with the teacher, the parents, other adults familiar with the student, and ideally (but, in the case of autistic students, not very often) the student himself or herself.  The person doing the assessment then analyzes all this data in order to determine what function the behavior serves for the student.  (Does it help to attract attention?  Provide sensory stimulation?  Allow the student to escape from difficult tasks?)[2]  Once the function or functions are identified, then the school team (teachers, aides, administrators, psychologists, etc.) can develop a Behavior Intervention Plan.  They can decide how the student’s environment and interactions with others might be modified in order to discourage the disruptive behavior and how the student can be encouraged to engage in more positive behavior.  For example:  if a student tends to scream every time the bells ring for class change or for a fire alarm, then the environment might be modified by covering up nearby alarm bells to dampen the sound.  The teacher could let the student know when regular alarms are about to sound, and the student could be encouraged to put on noise-cancelling headphones when those regular alarms are about to go off.  A student who runs away during transitions from one classroom to another can be given positive attention for learning each of the steps required for a safer transition (stop and wait by the classroom door, hold the teacher’s hand in the hall, etc.).[3]

 

The FBA/BIP combination is the best means we currently have for helping autistic students with “disruptive” behaviors remain in mainstream classes.  However, it is far from being a perfect solution.  One serious problem is that the law only vaguely defines the conditions under which a FBA/BIP is necessary.  The re-authorized IDEA requires them ONLY if the disruptive behavior is considered a “manifestation of the student’s disability”—whatever that means.  State laws and regulations are not much clearer.[4]  In practice, this vagueness allows students to be removed from mainstream classrooms and even removed from ordinary public schools without any attempt to modify their behavior, if that behavior is not obviously a “manifestation” of their disability.  Autistic students engage in many behaviors that can be, and all too often have been, incorrectly understood as “willful” or “manipulative,” rather than arising from their autism.  As a result, many have been moved to more restrictive environments without any effort at all being made to help them.

 

Another problem is lack of expertise.  Ideally, a skilled school psychologist or other experienced specialist would be in charge of the FBA/BIP process.  In practice—especially in impoverished rural or inner city school districts—the burden often falls on teachers, who may have had no training at all in behavior analysis and intervention. [5] However well meaning these teachers may be, they are basically operating on the fly, and their attempts to modify complex student behavior are often ineffective.  And if their efforts fail, the autistic student is generally moved out of the mainstream classroom.

 

A final issue is the very nature of FBA/BIP.  Like ABA, the FBA/BIP process has its roots in the behaviorist school of psychology.  The focus is on observable behaviors rather than on the mental processes that lead to those behaviors.  And in interpreting those behaviors, the emphasis is always on observable antecedents and consequences, which provide some clues to the target behavior’s function for the person engaging in it.  Skilled behavior analysts can often learn why a particular behavior is happening, and can then develop a plan for modifying it.  But the reasons for other behaviors elude them, because the people they are studying actually have complex mental processes, in which long-term memory and reasoning, as well as simple reactions to the environment play a role.

 

No matter how finely honed the instruments used for tracking behavior may be, they are not meant capture the internal experience of the autistic student.  Invisible stressors go unnoticed, especially if the student is never interviewed during the FBA process, but also when an interview has taken place, unless the student is unusually self-aware.  The behavior analyst may not understand the extent of the student’s sleep deprivation, or the impact of chronic stomach pain.  They may not realize that a student who has been systematically bullied for many years has come to see apparently innocuous remarks by teachers and other students as insulting and infuriating.  They may not recognize that a particular smell arouses memories of a traumatic experience many years earlier.

 

Behavior analysts also often miss the cumulative impact of multiple stressors, especially when the earlier stressors are not easily observable.  When a student keeps getting up and using the pencil sharpener in math class immediately after lunch, for example, the behavior team will usually, and quite reasonably, assume that the chaos in the school cafeteria is creating so much stress that the student cannot deal with the demands of math problems immediately afterwards and is trying to escape from them.  They may try to modify the student’s lunchtime experience, by letting him or her eat in another setting.  However, this won’t solve the problem if the demands of math class represent the breaking point in a day that has involved not only the chaos of the lunch room, but also (unobserved) teasing from a sibling during breakfast, (unobserved) bullying on the bus, (unobserved) failure to understand a reading in English class, and (unobserved) feelings of humiliation in gym class.  If the lunchtime experience has been improved, and yet the student keeps on going to the pencil sharpener during math, this may actually represent the student doing his or her best to avoid a complete meltdown, rather than a student trying to “escape task demands.”  Under the circumstances, there are more humane responses than declaring the BIP a failure and taking the student out a math class altogether.

 

I am not trying to suggest that the FBA/BIP process is useless—far from it.  The schools that make use of it are at least trying to keep autistic students in mainstream classrooms, at a time when many other schools are not.  And often Behavior Intervention Plans do actually work, and unwanted behaviors are diminished or eliminated.  But sometimes BIPs don’t work, so teachers, aides and administrators might want to think more broadly and more creatively about ways to help students remain in their classrooms even when “disruptive” behaviors (so long as they are not actually harmful to people or property) continue.

 

I will return to the issue of the more harmful behaviors in the next post.

 

 

 

[1] Cynthia Dieterich, Nicole Snyder and Christine Villani, “Functional Behavior Assessment and Behavior Intervention Plans:  Review of ther Law and Recent Cases,” Brigham Young University Education and Law Journal (2017), 195-217.

[2] On functional assessment of behavior in a clinical setting, see Pamela Neidert, Griffin Rookes, Makenzie Bayles, Jonathan Miller, “Functional Analysis of Problem Behavior,” in Derek Reed, Florence Di Gennaro Reed, and James Luiselli, eds., Handbook of Crisis Intervention and Developmental Disabilities (New York:  Springer, 2013), pp. 147-67.  On FBA as actually practiced in schools, see George Noell and Kristin Gansle, “Introduction to Functional Behavior Assessment,” in Angeleque Akin-Little, Steven Little, Melissa Bray and Thomas Kehle, eds., Behavioral Interventions in Schools:  Evidence-based Positive Strategies (Washington, DC:  American Psychological Association, 2009), pp. 43-58; Alison Bruhn, et al., “Assessing and Treating Stereotypical Behaviors in Classrooms Using a Functional Approach,” Behavioral Disorders 41 (2015), 21-37.

[3] Nancy Stockall and Lindsay Dennis, “Stop the Running:  Addressing Elopement in Young Children with Disabilities,” Young Exceptional Children 19 (2016), 3-13.

[4] Lauren Collins and Perry Zirkel, “Functional Behavior Assessments and Behavior Intervention Plans:  Legal Requirements and Professional Recommendations,” Journal of Positive Behavior Interventions 19 (2017), 180-90.

[5] Michael Couvillon, Lyndal Bullock and Robert Gable, “Tracking Behavior Assessment Methodology and Support Strategies:  A National Survey of How Schools Utilize Functional Behavioral Assessments and Behavior Intervention Plans,” Emotional and Behavioural Difficulties 14 (2009), 215-28; Lindsay Oram, Sarah Owens and Melissa Maras, “Functional Behavior Assessment and Behavior Intervention Plans in Rural Schools:  An Exploration of the Need, Barriers and Recommendations,” Preventing School Failure 60 (2016), 305-10.  Many schools have no trained psychologist available to conduct FBAs.  In 2014-15, there was only one school psychologist for every 1,381 students in the United States:  National Association of School Psychologists,  Shortages in School Psychology: Challenges to Meeting the Growing Needs of U.S. Students and Schools, Research Summaries (Bethesda, MD:  National Association of School Psychologists, 2017).

Making Noise

The “disruptive” behaviors of autistic students, commonly adduced in arguments against inclusive education, actually fall into several different categories.  There are the “noisy” behaviors, the “movement” behaviors, and then—much more problematic and harder to defend—the “injurious” behaviors.  I would like to address each in turn.  First:  the “noisy” behaviors.

 

I have what’s called “cough-variant” asthma—instead of wheezing when I have an asthma attack, I cough.  I’ve had this all my life, but when I was a child it went un-diagnosed and untreated, and I lived with two  chain-smoking parents.  As a result, I did a LOT of coughing.  Sometimes it was just intermittent mild barking, but when I got sick—as I did at least three or four times a year–it became an almost constant, deep-chested, disgustingly gooey, hacking that usually went on for several weeks.  At these times, I coughed all day at school, seldom stopping except to gasp for breath.  Once, in middle school, Suzie H. indignantly informed me that my coughing had made her fail a test.   And in retrospect, I suspect that my coughing distracted and annoyed other students on a regular basis.  But no one ever complained to the teacher or the school administration about it, no teacher ever even mentioned it to me, and I never got in trouble for all the noise I was making.  Presumably, if they thought about it at all, they assumed, correctly, that it was beyond my control.

 

Students with autism who make noise in the classroom seldom enjoy the same tolerance.  A significant proportion of autistic children engage in regular vocalizations—making random sounds, or repeating words or phrases to themselves—often without even thinking about it.  It’s just something they do.  Others “stim” by tapping on their desks with pencils or their fingers—again, without even thinking about it.   These activities are usually beyond their control, just as my coughing was.  Yet unlike my coughing, this autistic noise-making tends to be seen as extremely problematic, as “disruptive” to the classroom.  Other students, teachers, and administrators get angry, assuming that the autistic kids are doing it “on purpose,” and could “stop if they wanted to.”  In reality, however, the kids don’t usually realize that they are making noise.  If confronted, they either stop for a while and then unconsciously start up again, or they become agitated and do whatever they have been told to stop doing even more.  And then the presumption becomes that they are “defiant.”

 

The fact is, however, that classrooms are almost never quiet, peaceful places in which everyone listens attentively to the teacher.  Classes are constantly being disrupted by noises outside the school (construction, garbage trucks, sirens, kids laughing and yelling on the playground, etc.),  within the school (squeaky shoes in the hallway, announcements on the public address system, fire alarms, etc.), and within the classroom itself (class pets squeaking and rustling, kids dropping books, coughing, sneezing, and whispering to each other).  If the noises made by autistic students could be accepted as just one among a number of similar distractions, if the noise could be explained to the other students in those terms, and then compensated for by strategic seating, the use of padded cubicles, and the substitution of other forms of self-soothing for autistic students whenever possible, then one of the main obstacles to inclusion could be overcome.  But this would require both teachers and students to look at these behaviors in a different and more tolerant way.