Tag Archives: Human Rights

Bullying In Schools

Trigger warning:  descriptions of bullying

 

I feel like the public school system failed me.”[1]

 

If you are a school bully looking for an easy target, you will soon discover that the nearest kid with autism fits your needs perfectly. Being generally naïve about social customs and interactions, children with autism are easily manipulated or tricked into dangerous situations.  Because of their unusual behaviors (and sometimes by personal preference), they tend to be socially isolated, leaving them with no protective support network of peers.  Teachers and other authority figures may mistrust or even dislike them, and so often fail to back them up when they report being bullied (see below).[2]

Scholars who have researched this subject all agree that students with autism spectrum conditions are disproportionately affected by bullying.  Depending on their definitions of bullying, the samples of children they study, and their methodology, their estimates of how many autistic kids have experienced bullying within a single year range from a low of 57% to a high of 94%.[3]  Some have concluded that children with autism are four times more likely to be targeted than neurotypical kids, and that 40% of autistic kids are bullied daily, compared with only 15% of neurotypical kids. Children with autism are also more likely to be targeted than other children with special needs (except perhaps for those with ADHD—another “unpopular” group at school) or obese children (also common targets for bullies).[4]  Having been bullied, some children with autism then go on to become bullies themselves, but only at about the same rate as neurotypical kids who have been bullied.  However, if they have both autism and ADHD, the likelihood of their becoming bullies in response to bullying increases. [5] 

Most U.S. schools now have anti-bullying programs, but few of these programs are effective.  (One exception is a program, developed in Finland but now being adopted in the United States, that targets by-standers[6].)  Overall, autistic students who have been bullied report receiving little support from their schools.  It is possible that busy teachers genuinely don’t see the cruelty perpetrated in their classrooms.  However, victims—to whom the situation is painfully obvious—often find it hard to imagine that their teachers don’t see what’s happening, so they conclude that the teachers simply don’t care: “They did absolutely nothing. Ignoring it was their best policy.”[7]  This perceived (and sometimes real) indifference adds an additional layer to the trauma the victims of bullying are already suffering.

Even when bullying is formally reported to the school authorities, the victim’s testimony may not be believed.  (My own family had to deal with this problem several times.)  If there are two different accounts of what happened, the school will often refuse to take a side: “I swear on my grave I never lied about anything. But when it came to authority, I’d report a kid, the principal or vice principal would do nothing. They would tell me how they talked to the other kid and listened to my story and didn’t know who was lying.[8][9] “[The teachers’] favorite mantra was always ‘it’s their word against yours.’”[10]  However, since those who bully generally have a stronger support network than their autistic victims, they may actually find it easier to get their accounts corroborated.  This is especially the case with the “popular” kids, whom adults may perceive as “good people,” who “would never engage in bullying.”  And so, in far too many cases, the school actually accepts what the bullies have to say: “when I told a co-ordinator that 2 girls in my class were bullying me, her ‘solution’ was to call the girls up to her office and ask them in front of me if they were bullying me. Of course they told lies and the situation got worse after that . . .[11]  “ . . . .  when I reported it to the teachers, ‘sorry we have to go with majority on this’.[12] In cases like these, the situation either fails to improve or more commonly gets worse.  Sometimes the person who has been bullied gets punished (most often for retaliating, but sometimes even for reporting) and the bully gets off scot free.[13]  In Arkansas, for example, a student who reported being bullied to his teacher was called a “tattle-tale,” and forced to sit in the “time-out” chair.[14]  At this point, a victim will simply stops looking to the school for support: “I got tired of teachers never doing anything about the bullying so I quit telling my teachers about the bullying.”[15]

To make matters worse, the adults in charge of schools are sometimes bullies themselves.  Leaving aside the sometimes abusive use of physical restraint and seclusion, and other institutional forms of control and discipline (which will be the subject of a later post), individual teachers, aides, coaches, and school administrators sometimes victimize their students in appalling ways.  In Georgia, one teacher resigned, after a school determined she had repeatedly  sprayed Lysol into her student’s face.[16]  In Texas, a group of teachers gave a student awards for being “Most Gullible” and a “Drama King” at the end-of-year awards ceremony.[17]  In Michigan, a teacher recorded and distributed a video of herself and the school principal taunting a child who had gotten stuck in a chair.[18]  I come from a family of public school teachers, and I am very sympathetic to the difficulties teachers today face in the classroom, but there is no excuse for this kind of behavior.  Never.  Any.  Excuse.

 

 

 

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

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

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

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

[5] Jessica Schroeder, et al., “Shedding Light on a Pervasive Problem:  A Review of Research on Bullying Experiences Among Children with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 44 (2014), 1522.  Cynthia Kim offers an autobiographical account of how she went from victim to bully:  Nerdy, Shy, and Socially Inappropriate:  A User Guide to an Asperger Life (London:  Jessica Kingsley, 2015), p. 14-15.

[6] A. Karna, M. Voeten, et al., “A Large-Scale Evaluation of the KiVa Antibullying Program, Grades 4-6,” Child Development 82 (2011), 311-30.

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

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

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

[10] Verdandi, in the “How Did Your Teacher’s Deal with Bullies?” discussion on the Wrong Planet website:

http://wrongplanet.net/forums/viewtopic.php?t=146798.

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

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

[13] Some examples of the negative consequences of reporting:  MightyMorphin, in the “If You Were Bullied At School . . . “ discussion on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=204456&start=45;

JoeDaBro, in the “My School Hates Autism” discussion on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?t=231793; Sparrow Rose Jones, No You Don’t: Essays from an Unstrange Mind (Self-published, 2013), p. 94.

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

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

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

[17] Kristie Smith, “Educators Should Never Set Students Up to Be Bullied,” Dallas News, June, 2014:  https://www.dallasnews.com/news/special-needs/2014/06/09/educators-should-never-set-students-up-to-be-bullied.

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

[19] Tharja, in the “Bullied By Teachers???” discussion on the Wrong Planet website:  http://wrongplanet.net/forums/viewtopic.php?f=14&t=98154&start=75

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

 

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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)

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.

Henny Kupferstein’s Research Study

Henny K. is a doctoral student working on sensory integration.  She also offers piano lessons via Skype to students on the spectrum (both speaking and non-speaking, including those with dyspraxia).  Henny  is currently conducting a research study on childhood behavioral interventions, from the point of view of both autistic adults and caregivers.  To participate, go to this site:

https://hennyk.com/2016/07/16/research-study-on-autism-childhood-interventions-online-survey/

I think the results should be extremely interesting.

 

 

The Education of Autistic Children, 1950-1975

This post will focus on the education of autistic children in the period between 1950 (shortly after Leo Kanner’s original articles on autism were published) and 1975, the year in which the groundbreaking Education for All Handicapped Children Act was passed.

 

This is a complicated topic to unpack, because the vast majority of adults considered autistic today did not have that label when they were children, back in the 1950s, 1960s and early 1970s.  Most adults now diagnosed with “high functioning autism” or with “Aspergers Syndrome,”[1] would never have been considered autistic in childhood because they did not meet Kanner’s strict diagnostic criteria (the only criteria then recognized in the United States).  They might have been considered “weird” or “eccentric” by those around them, but they usually had no formal diagnosis.  (An exception was Temple Grandin, famous today for her work in animal science and her advocacy on behalf of people with autism.  Her diagnosis in childhood was “brain-damaged”—only much later was it recognized that she was autistic. [2])  On the other hand, most adults who are today described as “low-functioning” autistics were incorrectly diagnosed in childhood as either psychotic, or intellectually disabled (“mentally retarded” in the language of the period), or both.  Only a tiny number of children who happened to come to the attention of the small number of researchers interested in the subject, and who met Kanner’s criteria, were ever actually diagnosed as “autistic.”  What this means is that we will need to distinguish in what follows between the ways in which these three groups—those who could pass as more or less “normal,” those who were considered either mentally retarded or mentally ill, and the tiny number actually diagnosed as “autistic”—were educated in the past.

 

Before 1975, most undiagnosed “high-functioning” autistics attended the same schools as their siblings, and usually without any support services, unless they had additional disabilities, or unless some thoughtful teacher came to their assistance.  A few of them flourished.  Others report that they struggled painfully through the system, wrestling with learning problems that neither they nor their teachers understood.  Stephen Shore, who now has a Ph.D. in Special Education and holds a faculty position at Adelphi University, remembers that in public school he was usually behind the other children in math and reading.  Indeed, Shore’s first grade teacher told his parents that he would never be able to do math.  (In college, however, he successfully completed calculus and statistics, and earned a degree in accounting).[3]  It is surprising, in fact, how many autistic adults report struggling with math in childhood, given the widespread assumption today that autistics are somehow more attuned to math than to studies that require sophisticated use of language.  Dawn Prince-Hughes (who later earned a Ph.D. in Anthropology, became an expert in primate behavior, and wrote a number of books on that subject) recalls the horrible year in third grade when she both developed severe asthma and encountered a particularly unsympathetic teacher.  This teacher punished her for her unexplained failings in math by refusing to let her engage in the reading and writing assignments at which she excelled.  The teacher also announced to the entire third-grade class Prince’s failing math grades, as well as the fact that she was being tested for mental retardation.[4]

In addition to their academic struggles, these undiagnosed children almost always suffered from horrendous bullying from both teachers and classmates.[5]   Real and threatened beatings, tripping, pushing, being shut in lockers, suffering “swirlies” in the toilet and other forms of humiliation, and every kind of insult were commonplace.[6]  For some, this was simply the way things were:  “It never occurred to me at that time to talk to my parents about the problem of bullying in school and the teachers never told them either.  I accepted it as a fact of life.”[7]  Others were driven to retaliate.  After years in elite private schools for girls, Temple Grandin finally got tired of being called names.  When one of her seventh-grade classmates called out, “Retard!  You’re nothing but a retard!”, Grandin threw a book at her, hitting her in the face.  She was expelled from the school as a result.[8]  A few of the children became bullies themselves. [9]  Still others, like John Elder Robison, simply found it too difficult to cope with the sensory and social stresses of school, and dropped or failed out.[10]

 

But what about the other two groups, the tiny few with an actual autism diagnosis, and the much larger number considered mentally retarded or psychotic?  Before 1975, these children seldom received much schooling at all.  Some parents attempted to place their diagnosed child in the public schools, but the experiment seldom lasted more than a few months before the child was either withdrawn or expelled.[11]   A few well-informed or well-connected families managed to get their child into one of a handful of educational establishments designed specifically for the “severely damaged” or “profoundly disabled.”[12]  These establishments tended to focus on teaching functional living skills (toileting, dressing, speaking), but they sometimes offered the basics of reading, writing and arithmetic for the children who who it was believed could manage those subjects.[14]  Charles Martel Hale, Jr., for example, who was non-verbal and labelled at the time “severely to profoundly mentally retarded,” attended an apparently high quality programs in Queens, New York in the early to mid 1970s. He was taught some living skills, but no academics.  However, long before he finally learned to communicate on the computer and typewriter in the 1990s, he had already taught himself to add, subtract and multiply by listening to conversations and television programs.[13]

However, most “autistic,” “psychotic” or “mentally retarded” children were—on the advice of doctors and other professionals—swiftly shunted into psychiatric institutions or homes for the “feeble-minded,” and left to fend for themselves.[15]  Tom McKean, who had attended general education classrooms in his neighborhood school from kindergarten through third grade, before being transferred to classes for the Learning Disabled, was finally diagnosed as autistic in seventh grade and promptly transferred to a psychiatric institution.[16]  Many of the institutions in which these children were confined called themselves “schools,” but few offered much in the way of an education.  They might provide various forms of vocational training, so that residents could help “earn their keep.”  Most, though, were simply warehouses, where autistic children (along with many others) lived in ignorance and squalor, exposed to hunger, cold, and disease, and subject to abuse by older children and adult inmates and staff.[18]

 

 

[1] The labels “high-functioning” and “low-functioning,” although very widely used today, bear very little relationship to reality and should probably be avoided—although that is the subject for another post.  The latest edition of the Diagnostic and Statistical Manual (DSM) of the American Psychological Association no longer recognizes Aspergers Syndrome as a diagnostic category.  However, the phrase is still common in everyday usage.

[2] Temple Grandin and Richard Panek, “The Autistic Brain:  The origins of the diagnosis of autism—and the parental guilt-tripping that went along with it,” Slate Magazine (May, 2013):

http://www.slate.com/articles/health_and_science/medical_examiner/2013/05/temple_grandin_s_the_autistic_brain_an_excerpt_on_the_history_of_the_autism.htm.

[3] Stephen Shore, Beyond the Wall:  Personal Experiences with Autism and Asperger Syndrome (Shawnee Mission, KS:  Autism Asperger Publishing Co., 2002;  2nd ed. 2003), p. 53.

[4] Dawn Prince-Hughes, Songs of the Gorilla Nation:  My Journey through Autism (New York:  Random House, 2004), pp. 41-44.   Liane Holliday Willey also reports that she “hated and was terrible in math:”  Pretending to Be Normal:  Living with Aspergers Syndrome (London:  Jessica Kingsley Publishers, 1999; expanded ed., 2014), p. 47.

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

[6] There will be more on this topic in another post.

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

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

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

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

[11] On the exclusion from school of children with an autism diagnosis before 1975, see Anne Donnellan, “An Educational Perspective on Autism: Implications for Curriculum Development and Personnel Development,” in Barbara Wilson and Anneke Thompson, eds., Critical Issues in Educating Autistic Children and Youth (Washington, DC:  United States Department of Education, 1980), p. 53.  For an example of a diagnosed child who spent a short while in the public schools, see Jules Bemporad, “Adults Recollections of a Formerly Autistic Child,” Journal of Autism and Developmental Disorders 9 (1979), p. 184.  Incidentally, the word “formerly” in the article title does not refer to any form of “recovery” from autism.  Instead, the child whose life is recounted has turned into an adult and Bemporad seems unwilling to describe an adult as “autistic.”

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

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

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

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

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

[18] More on these institutions in a later post.

Back Again

I’ve been silent for a few months–the result of a cancer scare (thank goodness, it turned out to be benign), dear husband’s pneumonia, and various crises among the teens.

At some point I’ll get back to the posts I was doing about the nature of autism (when this turns into a book, those will be part of the introduction).  For now, though, I’m going to start writing about autistic people’s right to an education–specifically, here in the United States, a “free, appropriate, public education” (FAPE).  (There will be a separate chapter in the book on educational rights.)

I would be EXTREMELY grateful to any autistic adults/adults with autism who would be willing to share with me their educational experiences over the last few decades and their thoughts about education today.  When you were in school, were you taught academic material, or merely life skills?  How effectively were you taught?  How were you treated in school–by administrators, teachers, and fellow students?  How do you think children on the autism spectrum can best be taught?

Autistic Intelligence, Part 1

Less than a week into the 2015 school year, six-year-old Xavier Gresham was threatened with suspension from his elementary school in rural Louisiana for “disrupting class” by “speaking out of turn.” The boy’s mother argued that his doctor had diagnosed him as autistic and that consequently he needed help from the school district in order to get his behavior under control. But that help could not be provided unless the district itself evaluated him. Xavier’s mother claims that her request for a district evaluation had been refused on the grounds that her son was “too smart” to be autistic. If her statement is accurate, the school administration, and perhaps even the district’s special education staff, associated autism with intellectual disability and could not accept the possibility that someone who, like young Xavier, who was actually at the top of his class academically, might also have autism.

 
Such attitudes are, sadly, still fairly common in the United States today. They persist for historical reasons–because the majority of special education teachers, administrators, assessment specialists and educational consultants now in practice received their training in a period when the link between autism and intellectual disability was virtually unquestioned. It might surprise many of these professionals to learn that the scholar who first introduced the term “autism” to the United States in the 1940s and 1950s assumed that all—or virtually all–autistic people were of average or above-average intelligence. Leo Kanner, a child psychiatrist at Johns Hopkins University, carefully distinguished autism (which he considered a very rare phenomenon) from what he called “feeble-mindedness.” Indeed, he insisted that the children he studied were actually quite intelligent, even though they refused to submit to standard IQ testing. The proof of this, according to Kanner, lay in the remarkable mental skills they demonstrated:
The astounding vocabulary of the speaking children, the excellent memory for events of several years before, the phenomenal rote memory for poems and names, and the precise recollection of complex patterns and sequences, bespeak good intelligence in the sense in which this word is commonly used.
Kanner and his immediate successors considered autism a form of mental illness, and indeed, as more likely to affect smart and sensitive children than those of lesser intelligence. Through the 1950s and well into the 1960s, therefore, the intelligence of autistic children (adults were almost never discussed) was generally taken as a given. One scholar actually acknowledged that autistic children often behaved “almost as idiots,” yet insisted that their behavior could be explained by “withdrawal and emotional block.” “Intelligence is normal,” he stated, “and often better than normal.”

 
Over the course of the 1960s and 1970s, however, more and more researchers began to question this assessment. The increasing tendency was to view autism as a developmental disability rather than a mental illness. Its etiology was “biogenic” rather than “psychogenic”—it was caused by physical differences in the brain and nervous system rather than by psychological trauma. Thus, the premier scientific journal in the field, the Journal of Autism and Childhood Schizophrenia (many scholars, including Kanner, had identified autism as a form of early-onset schizophrenia) was eventually re-named the Journal of Autism and Developmental Disorders. Unfortunately this move towards a biogenic explanation was almost always coupled with the assumption that autism was a form of mental retardation. In one of the earliest studies to suggest a “biogenic” element in autism, the English psychiatrist Michael Rutter proclaimed that nearly half of the children he studied had IQs below 50.  Investigators at Indiana University reported that a full 94% of the children they had tested, using a variety of instruments, scored in the “retarded” range. An overwhelming consensus was emerging: autism entailed cognitive deficits. Unfortunately, as we shall see, this consensus was based on faulty research.
As the new view of autism took hold, the “peculiar” behaviors associated with the condition were emphasized, while the accomplishments that Kanner and other early scholars had used to claim intelligence for autistics (large vocabularies, unusual skill at pattern recognition, prodigious memories, early reading ability) were explained away. For example: at a 1984 conference devoted specifically to teaching issues associated with autism, one American educator warned his colleagues that hopeful parents might mistake their child’s ability to read and write as evidence of intelligence. It was essential, he said, to make them realize that what appeared to be literacy was actually nothing more than “rote” memorization, involving no real comprehension. Parents, he said, should be encouraged to give up any hope that their children could move beyond basic living skills.

 
Before the turn of the new millennium, the hypothesis of mental retardation remained largely unquestioned. In 1996, a group of distinguished scientists reported to the National Institutes of Health on the state of autism research at the time. One point the scientists made was that “most, if not all persons with [autism] also have some degree of mental retardation.” The most respected researchers were convinced that autism entailed intellectual disability, and this meant that clinicians, teachers, and school administrators held similar views. In the last two decades of the twentieth century autism was discussed more frequently in newspapers and on television, and was even represented in films such as Rain Man; many ordinary Americans first learned about the existence of autism at this time. However, intellectual disability remained a consistent feature of media reports. A study of autism coverage in The New York Times, for example, reveals that “mental retardation” remained a major theme in articles on the subject throughout the 1980s and 1990s. As a result, the emerging public image of people with autism involved peculiar behaviors and occasional savant skills, but also general intellectual disability.

 

In Part 2 of this post, I will look at the ways in which ideas about autism and intelligence began to change–if only slightly–in England during the 1970s and 1980s.