Tag Archives: Human Rights

Civil Rights for Nonspeakers — Ido in Autismland

The traditional term for not speaking is ‘dumb.’ That says it all. If someone can’t talk then they are ‘dumb.’ I am dumb, apparently. The thesaurus offers these synonyms for dumb: among them mute, speechless, silent, and then fifty additional synonyms for stupidity, including the colorful pinheaded and dim-witted. The bias equating intelligence with speech…

Civil Rights for Nonspeakers — Ido in Autismland

Diagnosis and Discipline

For a student with autism, diagnosis is always a double-edged sword.  On the one hand, an official diagnosis may result in access to services such as ABA (for good or ill), speech therapy, occupational therapy, physical therapy, etc.; and for accommodations at school such as classroom aides, extended time on tests, access to quiet rooms, etc.  It offers some legal protections against suspension or expulsion from school.  At the same time, autism obviously carries a profound stigma in American society.  In school, the child who has an autism diagnosis is often regarded by administrators, teachers and staff as different and potentially dangerous.  Non-verbal autistics are usually assigned to special education classrooms, or even separate schools, where they usually receive only a limited academic education, regardless of their actual intelligence and potential.  And despite privacy rules, autistic children’s diagnoses far too often become known to their fellow students, resulting in bullying.

Many parents are aware of these problems, and struggle with deciding what is best for their child, or sometimes what is best for the parents themselves, or for the rest of the child’s family.  Should they seek a diagnosis or not?  And if they do receive a diagnosis from a doctor or psychologist, should they share it with the school?  Does their child’s need for services, accommodations, and protection outweigh the potential impact of stigma?  But parental anxiety about stigma is only one of many factors affecting whether a child is diagnosed.  Sex, socio-economic status, race/ethnicity, immigrant status, language and cultural differences, and even the place where a child lives, all play a role in determining who will be diagnosed and who will not.

“Four times as many boys as girls have autism.”  This has been repeated so often that it may be treated as a simple fact.[1]  But the correct formulation should actually be that “four times as many boys as girls receive autism diagnoses.”  We simply don’t know how many girls have autism.  What we do know now, though, is that many girls on the spectrum remain undiagnosed because parents, psychologists and pediatricians don’t know what autism looks like in girls.[2]   For example: parents and care-givers are more likely to become concerned and more likely to seek a professional diagnosis when children engage in “externalizing” (aggressive) behaviors.  But because girls are less likely than boys to behave aggressively, parents may not realize the extent to which they are “different” from other children, and as a result, their daughters may not be tested for autism until they reach school age or even beyond.[3]  In addition, most parents and professionals still don’t realize that autistic girls are better at “camouflaging” or “passing” than autistic boys, because they are likely to imitate the behavior of those around them (even if they don’t understand the reasons for that behavior), whereas boys are more likely to simply withdraw from social interactions altogether.[4] The standard diagnostic criteria for autism present additional problems.[5]  Engagement in repetitive behaviors has long been a key criterion.  But autistic girls are less likely to engage in repetitive behaviors than boys—and even when they do, these behaviors may appear at first glance to be normal for young females.  Autistic girls may collect dolls or devote lots of time to coloring pictures.  What parents and the professional responsible for diagnosis often don’t realize is that these girls are not playing with the dolls, but rather lining them up according to the color of their dresses; they are filling their coloring books with intricate patterns that have little to do with what’s going on in the pictures.[6]  As a result of these and other factors, girls are generally diagnosed at a later age than boys, and may remain undiagnosed into adulthood, even when they are quite severely affected by autism.”[7]

Coming from a poor family also makes it less likely that an autistic child will receive a diagnosis.  As one study found:  “ . . . the proportion of children in poverty receiving services or supplementary income because of ASD was lower than the proportion expected on the basis of estimates of the prevalence of ASD in the general population.”[8]  While autism diagnoses have increased rapidly in recent years, the increase has been much lower for the poor than for other income groups.[9]  This is almost certainly because access to health care (and therefore medical sources of diagnosis) is much more limited for the poor in the United States, than for the middle and upper class.  In countries with universal health care, such as Sweden and France, such differences do not exist.[10]

Children of color are less likely than white kids to be diagnosed with autism.  They are also more likely than white kids to be diagnosed late (after they have started school), or simply mis-diagnosed as having emotional or behavioral problems. The time from when parents become concerned to when the child receives an official diagnosis (if they ever do) is significantly longer for children of color than for whites.  Even when socio-economic status and levels of parental education are factored in, these disparities remain.  Among children of color, those most likely to be diagnosed are those with lower (or apparently lower) IQs, while those with the “milder phenotype” of autism (what used to be called Aspergers syndrome) remain under-identified. Fewer children of color receive early intervention services (such as ABA or TEACCH) for autism, and when they do receive services, it is generally for fewer hours a week. Once they reach school age, they are more likely than white kids to be identified as having “behavior problems” and are over-represented in school services targeting behavior (as opposed to social skills or learning techniques). [11]  High levels of poverty in these communities, as well as prejudice, contribute to these disparities.  Racial disparities in diagnosis and services affect all non-white children, but some groups—especially Hispanics and African-Americans—are more seriously affected than others.

Immigrant families may be poor and they may belong to racial or ethnic minorities, but they also face problems in receiving accurate diagnoses for their children simply because they are immigrants.  Language differences can be a significant barrier, because so many of the diagnostic tools for autism are based on instruments originally written in English, and perhaps unavailable in, or poorly translated into, other languages.  (Some immigrants may also be unable to read or write.)  Lack of familiarity with American medical and educational systems may play a role, as do those systems lack of familiarity with other cultures.  For example:  many American practitioners view a child who is unwilling to make eye contact with them as potentially autistic.  However, in many immigrant communities, children are taught that it is rude to look directly into an adult’s eyes.  Some of the testing used to detect autism looks at children’s interactions with toys—but immigrant children may have never seen the toys presented to them, and may have no idea how to play with them “appropriately.”[12]  It is also possible that cultural differences may shape an immigrant family’s decision to seek a diagnosis. One study found that Korean-American families in New York City were often reluctant to seek diagnosis (or even discuss autism with others), because of the shame having a disabled child might bring on their family.[13]  This, and other similar studies, must be treated with caution, however, because they tend to be based on interviews with a very small sample of people, who may not be representative of the group as a whole.  However, it is certainly possible that cultural differences play a role in immigrant families’ decision to seek a diagnosis.

Finally, there is the question of whether families who want a diagnosis and who have enough resources to get one can find someone to provide it.  Other things (wealth, English language competency, etc.) being equal, it is not very difficult to find a doctor or psychologist able to diagnose autism in most of America’s big cities.  However, one recent, if somewhat controversial, study, has identified a multitude of “diagnosis deserts,” especially in rural or thinly populated parts of the United States.  80% of U.S. counties have no autism diagnostic clinics.[14]  Families from these areas have to either travel long distances to find a qualified diagnostician, or wait until their children are old enough to receive diagnoses and services from local school systems.

Disparities in the ability to get an autism diagnosis are significant, and they have significant implications as well.  In my next post I will concentrate on just one issue—the impact of having/not having an autism diagnosis on school discipline.

[1] E.g., “What is Autism Spectrum Disorder,” Center for Disease Control and Prevention website (current):  https://www.cdc.gov/ncbddd/autism/facts.html;  Deane Morrison, “Why Autism Strikes Mostly Boys,” University of Minnesota’s Office of the Vice-President for Research’s website (November 27, 1917): https://research.umn.edu/inquiry/post/why-autism-strikes-mostly-boys;

[2] Sylvie Goldman, “Sex, Gender, and the Diagnosis of Autism—A Biosocial View of the Male Preponderance,” Research in Autism Spectrum Disorders 7 (2013), 675-679; Lauren Little, et al., “Do early caregiver concerns differ for girls with autism spectrum disorders?” Autism: The International Journal of Research and Practice 21 (2017), 728-32;

[3] Jorieke Duvocot, et al., “Factors Influencing the Probability of a Diagnosis of Autism Spectrum Disorder in Girls versus Boys,” Autism: The International Journal of Research and Practice 21 (2017), 646-58.

[4] Rachel Hiller, Robyn Young, and Nathan Weber, “Sex Differences in Pre-Diagnosis Concerns for Children Later Diagnosed with Autism Spectrum Disorder,” Autism: The International Journal of Research and Practice 20 (2016), 75-84.

[5] Although this view remains somewhat controversial.  Compare two recent articles in Spectrum News:  Nicholette Zeliadt, “Diagnostic Tests Miss Autism Features in Girls” (May 13, 2017): https://www.spectrumnews.org/news/diagnostic-tests-miss-autism-features-girls/; and Hannah Furfaro, “Diagnostic tests don’t miss girls with autism, study suggests”: https://www.spectrumnews.org/news/diagnostic-tests-dont-miss-girls-autism-study-suggests/.  It is worth noting, however, that the study described in the second article looked at girls already diagnosed with autism—which undermines its main point.

[6] Rachel Hiller, Robyn Young. and Nathan Weber, “Sex Differences in Autism Spectrum Disorder Based on DSM-5: Evidence from Clinician and Teacher Reporting,” Journal of Abnormal Child Psychology 42 (2014), 1381–1393.

[7] Rachel Hiller, Robyn Young, and Nathan Weber, “Sex Differences in Pre-Diagnosis Concerns for Children Later Diagnosed with Autism Spectrum Disorder,” Autism: The International Journal of Research and Practice 20 (2016), 75-84.

[8] Maureen Durkin, et al., “Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities,” American Journal of Public Health 107:11 (2017), 1818-1826.  See also Pauline Thomas, et al., “The Association of Autism Diagnosis with Socioeconomic Status,” Autism:  The International Journal of Research and Practice 16:2 (March, 2012), 201-13.

[9] C.D. Pulcini, et al., “Poverty and Trends in Three Chronic Disorders,” Pediatrics 139:3 (March, 2017).

[10] Maureen Durkin, et al., “Autism Spectrum Disorder Among US Children (2002–2010): Socioeconomic, Racial, and Ethnic Disparities,” American Journal of Public Health 107:11 (2017), 1818-1826.

[11] Amber Angell, et al., “A Review of Diagnosis and Service Disparities Among Children with Autism from Racial or Ethnic Minority Groups in the United States,” International Review of Research in Developmental Disabilities 55 (2018), 145-80.  See also Jason Travers and Michael Krezmien, “Racial Disparities in Autism Identification in the United States During 2014,” Exceptional Children 84 (2018), 403-19.  Travers and Kremien pay special attention to differences between states in racial disparities; these differences can be quite significant.

[12] Emily Sohn, “Why Autism Seems to Cluster in Some Immigrant Groups,” Spectrum News, 11/29/17.

[13] Christina Kang-Yi, et al., “Influence of Community-Level Cultural Beliefs about Autism on Families’ and Professionals’ Care for Children,” Transcultural Psychiatry 55 (2018), 623-47.  But compare the following three studies, each of which comes to a different conclusion about Mexican immigrant mothers’ attitudes towards autism: Elizabeth Ijalba, “Hispanic Immigrant Mothers of Young Children With Autism Spectrum Disorders: How Do They Understand and Cope With Autism?” American Journal of Speech-Language Pathology 25 (2016), 200-13;  Shana Cohen and Jessica Miguel, “ Amor and Social Stigma:  ASD Beliefs Among Immigrant Mexican Parents,” Journal of Autism and Developmental Disorders 48 (2018), 1995-2009; Brenda Barrio, et al., “The Impact of Culture on Parental Perceptions about Autism Spectrum Disorders:  Striving for Culturally Competent Practices,” Multicultural Learning and Teaching 14 (2019), 1-9.

[14] Hannah Furfaro, “New Autism Map Points to Diagnostic Deserts in United States,” Spectrum News, 8/28/19:

The Unending Nightmare

Trigger warning: discussion of suicide, psychiatric abuse

It’s been five weeks now, and beloved daughter is still locked in a nightmarish “mental health” ward, with a sadistic psychiatrist who refuses to believe that she’s autistic (she was first diagnosed at age 3 and multiple times thereafter) and who punishes her for acting autistic (“you’re just looking for attention”).

Seven months ago she was raped while asleep in her own bed in her own apartment. So the asshole psychiatrist, who knows about this, assigns male techs to watch her shower and use the toilet, and sometimes to “observe” her overnight. On those occasions she forces herself to stay awake all night because she’s afraid of what will happen if she sleeps.

Her only comfort in the ward is a little stuffed dog toy—so they punish her by taking it away from her if she’s not “compliant” enough.

The idiot psychiatrist seems unable to grasp the fact that she is suffering the aftereffects of multiple traumas, and has decided that she must have borderline personality disorder—despite the fact that she doesn’t come close to meeting the DSM-V diagnostic criteria.  So they have started hounding her to admit that she’s “manipulative.”

She wasn’t in very bad shape when she went into this place—she had made a kind of half-hearted suicide attempt.  But now she is in a really terrible state of mind, and I’m afraid she really will kill herself from the trauma of this hospitalization.

We WILL sue the hospital.  Any suggestions about individuals or organizations that would like to join in?

 

 

 

Hard Times in the Midwest

Trigger warning:  discussion of suicide.

 

Once again, I haven’t posted for a while.  This is because Deeply Beloved Daughter is doing badly.

She’s in her senior year of university now, and very successful academically, but the last six months have been a total disaster emotionally.

She was sexually assaulted (to her credit, she pressed charges and the guy is now in jail, but it was super hard).  Her sister developed a life-threatening illness, which really scared her.  Her grandmother, whom she felt very close to, died.  And one of her best friends from high school committed suicide.  One trauma after another.  And all through this, she maintained her mask of being “normal”/neurotypical (her choice, not her parents) and worked hard at school  But the additional pressure of final exams did her in.  She began self-harming and talked about suicide.

So here she is, in her third week on a psychiatric unit where no one understands anything about autism (we had to explain meltdowns to them), where she can’t escape the fluorescent lights or the noise, where the staff are constantly criticizing her, and where she’s being heavily drugged with useless and potentially very harmful stuff.  Two days after Christmas she goes before a judge who will probably commit her to a state hospital.  (Yes we have lawyers and expert opinions, etc., but we are not very hopeful).

Those of you who pray, please pray for us.  Everyone else:  fight like hell for better psychiatric care for autistic people.

 

 

 

 

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.

 

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.