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.

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Wrenching post from We Always Liked Picasso Anyway

This is a hard thing to write. But I don’t think that many people really love me.They claim that they do. They tell me I am great and they love my sense of humor, or my artistic abilities or my way with words.But when it really comes down to it, they don’t really love me.I…

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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).

Disruptive Behaviors: The “Movement Behaviors”

 

“[School] was a nightmare full of loud sounds, bright colors, and noisy children.  The adoration I received for being ‘so smart’ faded with each grade.  I could not understand what was happening.  Instead of praise, I was constantly getting reprimanded.  Nothing made sense.  Even [the school principal] no longer meant what he said.  He said I could come and see him whenever I wanted, but he lied.  When I rose from my seat, walked out of my classroom, and went down the stairs to the main office to see him, I was in trouble.  ‘Young lady, you cannot just walk out of [the teacher’s] class and come down here.’  Tears welled up in my eyes as I tried to make sense of it.”[1]

 

Many autistic students move their bodies in ways other students do not (or at least not as regularly).  They may flap their hands, bounce up and down in their seats, twirl in the aisles, hide under their desks, get up and wander around the classroom, or try to leave the room or even the school.  (They may also behave in more disturbing ways.  Meltdowns, self-injury, and aggression towards others will be the subject of another post–for now, I want to focus on the actions just described:  flapping, bouncing, rocking, and various “out-of-seat behaviors” like hiding, wandering, and running away.)

 

Schools often view these “movement behaviors,” even more than vocalizations, as barriers to the inclusion of autistic students in mainstream classrooms.  Movement behaviors make many teachers uncomfortable because they break the visual pattern of an orderly classroom and appear to undermine discipline.  Some administrators and teachers also attribute disturbing motivations to students who behave in these ways.  They may view certain types of movement as evidence of defiance or disrespect, as acts of wilful disruption.  They fail to realize that autistic students who flap and rock and hide are not generally trying to be disruptive (with a few exceptions, to be described below).

 

In the first place, because autistic students often do not pick up on social cues from their fellow students, they may simply not understand why they can’t just move their bodies the way they want in school.  If they bounce or twirl at home, they assume that they can also bounce or twirl at school.  They may view demands that they stop as nonsensical, or–especially when their movements are related to sensory issues—they may simply be unable to stop.  As researchers and teachers are slowly coming to realize, movement is often a necessity for autistic children.[2]  Rocking may alleviate dizziness, making a student feel less likely to fall out of his or her seat.  Bouncing may help a child locate his or her body in space, diminishing the terrifying feeling of being “disembodied.”  If a fire alarm suddenly goes off, the only choice for some children will be to run away from an intolerably painful noise.  Many students with autism use movement to distract or protect themselves from sensory overload, or–on the other hand–to gain the sensory stimulation they need to remain focused on their schoolwork.

 

If some teachers are beginning to understand the connection between movement behaviors and sensory needs, far fewer understand how other factors are involved.  They may not realize that some autistic students move around because of their very eagerness to learn.  A child with auditory or visual differences may rove through the classroom trying to find a spot where he or she can access the information the teacher is presenting.  A child keenly interested in nature or in the trucks rolling down the street outside the school may run to the windows or even outside the school to pursue those interests.  Students bored with their own “toned-down” curriculum may wander around the classroom to catch a glimpse of what other students are doing.[3]

 

Emotional as well as intellectual issues may play a role.  Jeanne Davide-Rivera, the author of the passage cited above, left her classroom to visit the nice principal she had met her first day of school—the one who had actually told her she could visit him any time she wanted!  She found it intensely confusing when she was told that her behavior was wrong.  In her case, movement was a response to the desire for human connection—a desire autistic students are often assumed not to have.  Movement is even more often a response to anxiety associated with heavy academic or social unease.  In some children, anxiety leads to increased rocking, bouncing, or hiding.  Emotional distress caused by real or perceived academic “failures,” or by cruelty on the part of teachers and classmates often results in “elopement” or bolting out of a classroom or school.[4]

 

It remains the case, however, that most movement behaviors are either well-intentioned (that is, the student is actually trying very hard to be “good”) or unavoidable (he or she simply needs to move).  Only rarely is autistic “acting up” intended disrupt the class—and even then, this is not always for the reasons teachers or administrators imagine.  To give one unexpected example:  children overwhelmed by the visual and auditory stimuli in their classrooms may discover that they can hear and understand their lessons better from a desk in the hallway, which they then learn they can acquire for themselves through some planned infraction of the rules about movement.[5]  For these children, engaging in “undesirable” movement behaviors becomes the key to learning.

 

More commonly, however, deliberate misbehavior is a planned reaction to intolerable stress.  It is an undeniable fact that autistic students seldom enjoy school.  Much more often they experience school as “a nightmare” or as “hell.”[6]  Few administrators or teachers understand how painful school is for these students.  Day after day they must endure constant bombardment by sensory stimuli, the terror of (often unsuccessful) social interactions, and—most serious of all—the attentions of sadistic bullies.  (More on bullying in another post.)  After they have suffered for months or even years, some of these students consciously decide to behave in ways they know are wrong, in the hopes of being suspended and allowed to stay home.  The Wrong Planet website (an online forum for those with autism) has had several discussion threads about school suspension, and a common theme is seeking out suspension as a way to avoid bullies.[7]  What is most striking about these posts, however, is how often the authors used this approach only as a last, desperate resort.

 

So when teachers or school administrators are faced with autistic students who bounce, rock, twirl, and elope, they would do well to consider all the other possible reasons for these movement behaviors, before assuming that their students are simply being disrespectful.

 

 

 

 

 

 

[1] Jeanne Davide-Rivera,  Twirling Naked in the Streets and No One Noticed:  Growing Up with Undiagnosed Autism ([Location Unclear]:  David and Goliath Publishing, 2013), p. 34.

[2] Sadly, there remain so-called “experts” who assume that these children are deliberately misbehaving:  e.g., Deborah Napolitano and David McAdam, “Problem Behavior,” in Tristram Smith, ed., Making Inclusion Work for Students with Autism Spectrum Disorders:  An Evidence-Based Guide (New York:  Guilford Press, 2012), p. 304:  “Throughout the day, students continually have a choice [emphasis added] of whether to display the problem behavior . . .”

[3] Consider the case of Laura, described by Paula Kluth, You’re Going to Love This Kid:  Teaching Students with Autism in the Inclusive Classroom, 2nd ed. (Baltimore:  Paul H. Brookes Publishing, 2010), p. 202.

[4] See the post by WAautistic guy on a thread about “What Are Your Worst Experiences at School” on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=14&t=166310&start=30.

[5] Davide-Rivera, Twirling Naked in the Streets, p. 36.

[6] See the thread entitled “Public Education is HELL for Aspie Children:  http://wrongplanet.net/forums/viewtopic.php?p=1100890;  skimming through the “School” forum as a whole makes clear why school is so often found intolerable by those with autism.

[7] E.g., the following:“Anyone Ever Threatened with Suspension?” (http://wrongplanet.net/forums/viewtopic.php?f=14&t=148672) and “Is Suspension Really a Punishment?”(http://wrongplanet.net/forums/viewtopic.php?t=194004)

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.

 

 

 

 

PLACEMENT: WHERE DO AUTISTIC STUDENTS LEARN BEST?

 

By law, students with autism are entitled to a free, appropriate, public education in the “least restrictive environment” that is “appropriate” for them.  But exactly what environment that should be is an extremely tricky question.  The educational placement of autistic students has given rise to explosive debates in newspapers, on twitter feeds, and during legislative sessions, as well as in EIP meetings, law courts, and even family gatherings.  One reason for this is that every single autistic student is different, and what works for one, will almost by definition not work for others.  But all too often, other factors—which should legally be irrelevant—come into play.  One recent study, for example, has shown that individual state policies and finances may make as much difference as a student’s abilities in determining his or her placement.[1]

 

The inclusion of autistic students in mainstream classes, alongside their neurotypical peers throughout the day, is theoretically the gold standard, the “least restrictive” of all educational environments.  However, full inclusion is also the most contentious form of placement, and not usually for the right reasons.   Emotion, ideology, and prejudice shape the arguments of both opponents and proponents of inclusion. [2]

 

On the one hand, it seems clear that full inclusion offers autistic children their best chance for a good education that can lead to college, employment, and independence.  In every other setting (except, under some circumstances, the homeschool), educational offerings are much more limited and future opportunities restricted.  Segregated special education classes and separate “autism schools” usually offer little in the way of real academics, even though they may be excellent at teaching functional living and social skills.  As a result, parents who believe that their kids are capable of academic achievement are often prepared to fight like grizzly bears to keep their kids in the mainstream classroom for all or most of the day.[3]

 

Grizzliness is necessary because while many teachers and school administrators support inclusion whenever possible, other educators—along with some public figures and some parents of neurotypical students—are vehemently opposed to it.  The reasons given for this vary, but the central claim is that autistic students (usually all lumped together in these arguments, despite the huge differences among them) behave in ways that are disruptive to their classmates and the school.

 

According to a 1994 memorandum from the federal Office of Special Education, excessively disruptive behavior can be used as a rationale to remove a child from an inclusive educational setting:

 

If a student with a disability has behavioral problems that are so disruptive in a regular classroom that the education of other students is significantly impaired, the needs of the disabled student cannot be met in that environment.

However, before making such a determination, school districts must ensure that consideration has been given to the full range of supplementary aids and services that could be provided to the student in the regular educational environment to accommodate the unique needs of the disabled student. If the placement team determines that even with the provision of supplementary aids and services, that student’s IEP could not be implemented satisfactorily in the regular educational environment, that placement would not be the LRE placement for that student at the particular time, because her or his unique educational needs could not be met in that setting. [4]

But precisely what behaviors reach the “so disruptive” threshold?  And what proportion of autistic students actually do disrupt classes any more than their neurotypical classmates?  These questions will be the subject of the next few posts.

 

 

 

 

[1] Jennifer Kurth, “Educational Placement of Students with Autism,” Focus on Autism and Other Developmental Disabilities 30 (2015), pp. 249-56.

[2] Note, for example, the over-the-top language found on journalist Richard Moore’s Autism page:  http://www.rmmoore1.com/autism.  He describes autism as an “epidemic” and compares it to a natural disaster:  “Now, in the United States and around the globe, a powerful earthquake of arguable origin has set off yet another health tsunami, which at this very moment is racing across the ocean of our lives, already affecting millions and millions, with millions more still in its path. This time it is a neurological disorder called autism, or Autism Spectrum Disorder…”  In writing about education, Moore insists that autistic students (all lumped together) simply “learn differently” than neurotypical or even other special needs students do.   He describes demands for inclusion as largely driven by ideology (while ignoring the “different and less” ideology that drives his own writing).

[3] E.g., the post “Autism and IEPs and Grizzly Mommas . . . Oh My!!”  on the Autism Sparkles blog:  https://autismsparkles.wordpress.com/2013/02/22/autism-and-ieps-and-grizzly-mommas-oh-my/.  Bear in mind (pun intended), that these ferocious parents are not always right—sometimes the mainstream classroom is simply intolerable for their children, who would be better served as home (if possible), or in a special education classroom with additional academic programming to suit their needs.  More on this below.

[4] Office of Special Education and Rehabilitative Services, “Questions and Answers on Least Restrictive Environment (LRE) Requirements of the Idea,” November 23, 1994.

Teaching Autistic Children: Perceptual Issues

Another significant, but seldom-recognized problem has to do with perceptual issues.[1]  A student cannot learn if she cannot see or hear what is being presented to her.[2] Very, very few public school teachers understand how perceptual systems—which directly affect learning—work in autistic students.  For example:  many (not all—remember: each autistic individual is different) have difficulties with auditory processing.[3]  It may take them a fraction of a second longer that neurotypical students to turn spoken sounds into intelligible speech, and this is just long enough to cause significant problems, as they constantly try to play “catch-up” with the rest of the class  They may also find it difficult to separate the significant sounds they are supposed to be hearing from background noise.  As a result, these students are often unable to follow a lecture or video, or comply with their teacher’s spoken demands.  Group work is even worse, as the autistic student struggles to separate what his or her own group is saying from what is going on in other groups around the classroom.  There are work-arounds for auditory processing issues, such as special seating near the front of the classroom, close-captioning for videos, the provision of both spoken and written instructions, exemption from group work, etc.  But the teacher must first be aware of the problem before solutions can be found.  Many a well-meaning and thoughtful teacher has caused frustration, withdrawal, even “meltdowns,” by insisting on a phonics-based approach to reading for a student with poor auditory processing skills. For such a student, a “whole-word” approach might work better. [4]

 

Other autistic kids have trouble with visual processing.[5]  They may be able to see clearly only with peripheral vision, in which case a teacher who insists that they “look at me” is actually ensuring that they will not see what the teacher is doing.  Meares-Irlen, “Scotopic Sensitivity” or “visual stress” syndrome is also often present in autistic kids.  Letters, words and numbers will appear to move around on the pages of a book or on a classroom whiteboard, making it almost impossible to follow what is being taught.  Some students affected by this syndrome may be helped with colored overlays or tinted glasses.[6]  When these don’t work, there are other work-arounds.  My own daughter, for example, struggles with math problems because of “floating” numbers.  She has developed her own (admittedly, rather time-consuming) system of writing out the problems using different colored pencils for different rows or columns.  The colors helped her keep numbers in their proper places.  Reading on an Ipad, with a font size large enough so that only a single line of text appears on the screen can help those with this syndrome with reading.  Teachers can help students find ways to deal with visual processing issues, but—again—only if they are aware of these issues in the first place.

 

If students can’t make sense of what they hear or see in the classroom, they will inevitably fail in school.  It is up to trained specialists to diagnose their auditory or visual problems, and it is then up to their teachers to find ways to help them overcome these perceptual issues.

 

 

 

 

[1] On sensory perception issues in autistic schoolchildren, see Olga Bogdashina’s excellent Sensory Perceptual Issues in Autism and Aspergers Syndrome (London:  Jessica Kingsley, 2003).  On sensory experience in autism more generally, see J. Horder, C. Wilson, M. Mendez and D. Murphy, “Autistic Traits and Abnormal Sensory Experiences in Adults,” Journal of Autism and Developmental Disorders 44 (2014), 1461-69.

[2] There are work-arounds, of course, used in schools for the deaf or blind, but most autistic students are not actually deaf or blind, so these techniques may not work for them, even in the unlikely case that they are offered them.

[3] P. Dawes, D. Bishop, T. Sirimanna, et al.  [“Profile and Aetiology of Children Diagnosed with Auditory Processing Disorder (APD),” International Journal of Pediatric Otorhinolaryngology, 72 (2008), 483–89], found that about 9% of children referred to a clinic specializing in auditory processing disorders also had a diagnosis of autism; this suggests that autistic children are much more likely to have an APD than neurotypical children.

[4] Leslie Broun, “Teaching Students with Autistic Spectrum Disorders to Read,” Teaching Exceptional Children 36 (2004), 36-40.  See also: Kate Nation, Paula Clarke, Barry White, and Christine Williams, “Patterns of Reading Ability in Children with Autism Spectrum Disorder,” Journal of Autism and Developmental Disorders 36 (2006), 911-19;  Kelly Whalon, Stephanie al Otaiba, and Monica Delano, “Evidence-Based Reading Instruction for Individuals with Autism Spectrum Disorders,” Focus on Autism and Other Developmental Disabilities 24 (2009), 3-16; Janet Spector, “Sight Word Instruction for Children with Autism:  An Evaluation of the Evidence Base,” Journal of Autism and Developmental Disorders 41 (2011), 1411-22.

[5] Unfortunately, the scientific study of visual processing issues in autism is still in its infancy.  Even the quite recent articles often fail to look beyond the most basic issues of face and pattern recognition:  e.g., Marlene Behrman, “Visual Processing,” in the Encyclopedia of Autism Spectrum Disorders, ed. F. Volker, P. Pelphrey, and D. Powers (New York:  Springer, 2013), pp. 3290-99.  Experienced teachers may offer more reliable information on how visual issues affect schoolwork:  e.g., Bogdashina, Sensory Perceptual Issues in Autism.

[6] The Irlen method of using colored overlays and glasses to treat these individuals remains highly controversial, but has proved life-changing for some autistic individuals.  A famous example is that of the late Donna Williams, the Australian writer and autism activist.

What Does This Say About ABA?

Brilliant older daughter recently attended the Association for Behavior Analysis International’s annual conference.  This is an odd convention, because about more than half of the participants are ABA practicioners, who work with autistic childfen, while many of the rest are people who study animal behavior.

A. was presenting the results of her research on dog behavior, and the response was tremendous!  People were so impresssed that they asked whether she was a graduate student, a post-doc, even a professor–whereas in reality she is only a sophomore in college.

However, things changed after her well-meaning mentor disclosed to all her acquaintances at the conference that A. is on the autism spectrum.  At that point, people began to walk up to A. and ask if she was that “sophomore with autism” they had been hearing about.  She found this very embarrassing.  But what really infuriated her was the difference in reaction between the animal researchers and the ABA practicioners.  The former asked if she was “that sophomore with autism,” but then they continued to discuss her research and pose challenging questions (which she enjoyed answering).  The latter, on the other hand, started talking down to her, and even ignoring her completely, directing their questions instead to her mentor.  What does this say about their attitude towards autistic people–can they not even imagine the possibility of a smart, articulate autistic who might be able to teach them something?

The Challenges Facing Autistic Children in America’s Schools

After 1990, the number of young people with autism diagnoses educated in public schools in the United States rose rapidly;  the legal mandates of IDEA ensured that still others were educated in private institutions paid for with public funds.  Overall, then, access to educational institutions has improved dramatically for autistic children within recent decades.  It is doubtful, though, whether many of these children have reached their full educational potential.  Despite greatly improved access to schools, huge challenges continue to face autistic children seeking an education.  Few teachers are adequately trained to meet their learning needs, and indeed, those needs are still poorly understood even by “experts.”  The educational environment remains hostile, from both a sensory and a social perspective.  School buildings and classrooms are full of often unnecessary sensory stressors and distractions, not to mention intimidating bullies.  Moreover, autistic students continue to be disproportionately subject to severe and even life-threatening discipline, often for fairly minor infractions of the rules. These challenges will be the subject of the next few posts on this blog.

The most serious problem by far facing autistic students in American schools, however, is the presumption of stupidity, which leads to appallingly low academic expectations.  In one recent research project, only 56% of the autistic students studied had any academic skills at all listed in their IEP goals.  Their teachers simply did not expect them to reach grade-level academic content standards.[1]  This is because far too many teachers continue to associate autism with intellectual disability, even though, as we have already seen, current scientific research indicates that autistic people have the same range of intellectual abilities as everyone else.  The ability to speak (expressive language), depending as it does on physical capabilities, is certainly not a good indicator of intelligence.  Nevertheless, far too many (indeed, most) schools continue to assign empty labels like “high-functioning” or “low-functioning” to their autistic students, based on speaking ability and extremely problematic I.Q. testing.  Those labelled “low-functioning” are generally considered intellectually disabled.  They tend to be be shunted off into special education classrooms, which provide some life-skill and social-skill training, but often almost nothing in the way of academics.

 

One such individual, Michael Weinstein, describes his school experience in this way:

The school officials tested me and said I had an IQ of less than 70 and would never get a high school diploma, so I spent a lot of time learning how to wipe off cafeteria tables, sort utensils, and make little arts and crafts projects. Although I understood everything that was said to me, I could not indicate in any way, verbally or non-verbally, that I understood them.[2]

Eventually Mr. Weinstein learned to type, enabling him to demonstrate his genius-level I.Q. and his exceptional skills in mathematics.  Similarly, Philip Reyes reports that his teachers “were well meaning but believed I could not understand much of anything because I could not talk or write to communicate that I was smart and understood everything going on around me.”  Instead, Philip says, he was trained like an animal in school, “as everyone tried to make me act normally with candy rewards.”[3]

There is no inherent reason why special education classrooms cannot be intellectually challenging, but in practice they seldom are.  Bright young people may spend years in these classes hearing basic arithmetic facts or the names of colors repeated over and over again, but learning nothing that might later help them as either workers or citizens.  Ido Kedar, another non-speaking autistic, fiercely criticizes the thinking behind these practices:  “The assumption that people with severe autism all have impaired thinking has resulted in the underestimating of the true abilities of thousands of individuals, lack of adequate educational opportunities, isolation, loneliness, boredom, frustration, hopelessness, and a life of entrapment within one’s own body. This price is too high.”[4]

 

[1] Sara Witmer, and Summer Ferreri, “Alignment of Instruction, Expectations and Accountability Testing for Students with Autism Spectrum Disorder,” Focus on Autism and Other Developmental Disabilities 29: 3 (2014), 136-38.

[2] Michael Weinstein, “Life with Autism” on the Golden Hat Foundation blog:  http://www.goldenhatfoundation.org/about-us/blog/125-golden-hat-foundation-blog-70211

[3] “Communication Device Opens Up the World to Nonverbal Autistic Boy, Buffalo Evening News 12/3/15:  http://buffalonews.com/2015/12/02/communication-device-opens-up-the-world-to-nonverbal-autistic-boy/.

[4] Ido Kedar, “Motor Difficulties in Severe Autism,” on the Ido in Autismland blog:  http://idoinautismland.com/?p=376.