Category Archives: Myths about Autism

Making Noise

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

 

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

 

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

 

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

 

 

 

 

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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.

The Education of Autistic Children, 1975-1990

The efforts of advocacy groups such as the National Federation of the Blind, the National Society for Crippled Children (later known as Easterseals), and the Association for Retarded Children (today known simply as the ARC) gradually increased public awareness of disabled children and the difficulties they faced during the 1950s, 1960s and early 1970s.  Under pressure from these groups and from their constituents, Congress began investigating the lack of educational opportunities for the disabled, and then experimenting with legislative solutions, such as offering grants to school districts for the development of (segregated) educational programs for the disabled. These early legislative efforts met with only limited success, however.  In 1971-72, it was estimated that only 17 states were educating even half of their identified children with disabilities; many other states were offering education to less than a third.[1]  At the same time, exposés of the horrible conditions under which disabled children lived in many state institutions were further increasing public demand for the placement of these children in real schools.[2]

Changes were occurring in the courts, as well.  After the Supreme Court decision in Brown vs. the Board of Education (1954), which highlighted the evils of segregating schoolchildren by race, advocacy groups and sometimes individual parents began bringing lawsuits against school districts for excluding and segregating children based on disability.  Many of these lawsuits failed, but the courts found in favor of the plaintiffs in several significant cases in the early 1970s, establishing the principles that even children with severe disabilities were entitled to an education, and that local districts could not use the excuse of lack of funds to exclude disabled children from school.[3]

The combination of increased public pressure, legislative precedent, and court decisions eventuallly led to the passage of the landmark Education for All Handicapped Children Act (PL 94-142) in 1975.[4]  The EAHCA mandated that all children, even the most severely disabled, must receive a “free, appropriate,public education”—thereby laying the foundations for our current system of special education.  It required that school districts identify the disabled children within their borders and then develop a plan for them to receive the educational services they needed.  In order to be “appropriate,” their education should come as close as possible to that offered to non-disabled peers (while still being tailored to the needs of the individual child), and should be offered in the “least restrictive environment” possible—ideally in the same classroom, or at least in the same school building as their peers.  The Education for All Handicapped Children Act also laid out processes through which concerned parents could challenge a school’s decisions about their child’s education.  In the decades since 1975, EAHC has been repeatedly reauthorized and refined (and in 1990 re-named, as the Individuals with Disabilities Education Act, or IDEA).

Passing such a law was a challenge in 1975, but implementing it has proved even more difficult.  To begin with, there have always been funding shortfalls.  In the EAHC, the federal government promised to cover 40% of the costs of educating children with disabilities, but in reality the highest percentage of costs ever covered was around 17% and more often it has been around 11-12%.[5]   Even when the states fulfilled their own financial obligations (which has not always been the case), there has never really been enough money for schools to work with.  One result is that the essential infrastructure for educating disabled children—ramps, accessible bathrooms, signs in braille, etc.—were missing from almost all schools in 1975 and remains substandard in many places even today.  (Fans of the new television show “Speechless” will remember the scene in which the mother of a child in a wheelchair, who has been asked to use the same inadequate ramp used to move the school’s trash bins, sarcastically challenges the school principal to distinguish between people and trash.)

In 1975 most school administrators knew little about disabled children, and even less about the supports they needed to thrive in school; most teachers had no training at all in working with them.  This situation has improved greatly over the decades, although there still remain many opportunities for improvement.  In 1975, however, dealing with kids who were deaf or blind, or those who had motor challenges was considered a major challenge.  The struggle to provide a “free, appropriate, public education” for a psychotic or mentally retarded child, let alone one with the still rare diagnosis of autism, was overwhelming.[6]  The fact is, when the Education for All Handicapped Children Act was passed, most educators had never even heard of autism.  (Hence the appearance in education journals during the late 1970s of various articles designed to explain the condition to them.[7])

What, then, were teachers to do when they were assigned to teach some of the few children diagnosed with autism?  At first, far too many settled for simply “killing time.”  The author of a 1980 paper took a very dim view of the schedule in use in one autism classroom she had visited:

Following such a schedule, it seems assured that, after 11,340 hours of educational opportunity over 12 years of schooling, the students would realize 1,800 hours of bathroom; 2,340 hours of snack, choices, circles, and goodbye’s; 2,880 hours of playground; and assuming that ‘centers’ equals ‘instruction,’ 2,520 hours or 2-2/3 years of instruction.  Unfortunately, approximations of such a schedule can be found in too many classrooms for students with autism and other severely handicapping conditions.[8] 

She proposed a much tougher schedule, focused on teaching speech and other “functional” skills to these children.  “Functional” became a buzzword in the field of special education over the course of the next decade, a way of identifying useful life skills ranging from toileting to meal preparation to riding the bus.  The adjective seldom referred to academic skills, because, as we shall see, these were increasingly viewed as inappropriate, or “non-functional” for those with autism.

In early state efforts at implementing the Education for All Handicapped Children Act, when autism was mentioned at all, it was typically listed among the emotional disorders, along with schizophrenia.[9]  This was in keeping with the traditional understanding of autism that had prevailed in the United States since Leo Kanner first wrote about the condition in the 1940s.  When teachers and administrators in the late 1970s encountered a child who had actually been diagnosed as “autistic,” they were usually told that the child’s problems were psychogenic, caused by cold, withdrawn parents (more specifically “refrigerator mothers”).  As late as 1985, a handbook written for teachers in mainstream classrooms in Minnesota listed autism as an emotional disorder, although the author noted that “the classification of autism as an emotional disturbance is currently being questioned.”[10]

Its classification was being questioned by educators in the 1980s, because scientists’ views of autism had changed dramatically during the 1970s.  Researchers like Michael Rutter in England and Bernard Rimland in the United States had come to see the condition as a developmental rather than an emotional disorder—as “biogenic,” rather than “psychogenic” in origin.  References to the work of these researchers began to appear in educational journals in the late 1970s,[11] but the new understanding of autism took at least another decade to achieve mainstream status.  Nevertheless, as educators gradually began to accept the idea that autism was a developmental disorder, they also began to adopt scientists’ faulty assumptions about autism and intelligence.[12]  By the late 1980s, children with a diagnosis of autism were automatically assumed to be intellectually disabled (“mentally retarded” in the terminology of the day).  What had been two separate diagnostic categories in earlier decades—the rare “autistic” and the much more common “mentally retarded”—began to flow together to form one.  In educational circles autism came to mean simply mental retardation accompanied by what were usually called “bizarre” behaviors.

And this meant that even those autistic children who appeared quite bright came to be viewed as cognitively impaired—in other words, their apparent abilities were deceptive.  It might look like an autistic child could read, but he was by definition unable to comprehend what he was reading;  it might look like an autistic child could multiply, but she was merely performing rote actions, without understanding what those actions meant.[13]  Attempting to provide further academic instruction beyond what was needed to count change in a store or read a street sign was futile at best.  And so the main subjects taught in classes specifically designed for autistic children were speech and language learning, and “functional” life skills—as evidenced by the frequent appearance of articles on techniques for teaching these subjects in educational journals during the 1980s, and the almost complete absence of articles on ways to teach autistic students academic skills such as reading, writing, or math.

The passage of the Education for All Handicapped Children Act in 1975 meant, then, that more autistic children than ever before were served by public schools.  However, they were not served well by those schools, partly because of the faulty expectations mentioned above, and partly because of faulty diagnoses.   Few doctors knew much about autism in the 1980s, and they very often misdiagnosed autistic children.  In 2013, there was a brief discussion on “What were you diagnosed with in the 80s?” on the Wrong Planet website. [14]  It turns out, as we might expect, that although many of the participants had been taken to multiple specialists in their childhood, almost none had been diagnosed with autism.  Instead, they received a variety of labels.  Some—those who had good verbal skills and the ability to disguise their autistic characteristics—were declared “normal” (if a little “weird”).  They were often able to remain in general educational classrooms.  A subset of this group was diagnosed with learning disabilities (especially attention-deficit/hyperactivity disorder) and received some supports from their schools.  Most, however, still struggled to learn without supports, suffered from severe bullying, and far too often dropped out.  As one contributor put it:  “Many people with AS back in the 1980s just struggled or coped as best they could without any diagnosis. Unless you had a ‘breakdown’, or were caught trying to commit suicide, or were in trouble with the police (‘delinquent’ or ‘troubled’) you were usually left to sink or swim.” Another reports:  “I was just considered weird, strange, outcast, bullied and generally rejected by my peers. I just learned to function and survive by myself, for myself, with myself.” [15]

Many other autistic children were labelled mentally ill (obsessive-compulsive, schizophrenic, severely depressed, bipolar, socially anxious, borderline-personality).[16]  In theory, the public schools were expected to serve the “emotionally disturbed,” but few were equipped to do so effectively, so most of these children had their educations interrupted by visits to psychiatric institutions.  Still others were labelled “mentally retarded.”  One highly articulate participant in the Wrong Planet discussion describes how she was originally thought to be autistic when she was examined back in 1986; however, her doctor eventually “settled on the diagnosis of Mental Retardation because I did not fit all the requirements for Classic Autism.”[17]  She spent years bouncing back and forth between special education and mainstream classes.

And finally there were the few who were actually diagnosed as autistic.  They, too, were considered “mentally retarded” (usually “profoundly mentally retarded”) because intellectual disabiity had become an integral part of the educational establishment’s understanding of autism.  The new educational outreach to disabled children had little impact on them.  In many states, the autistic and the “profoundly mentally retarded” were still considered “ineducable,” and relegated to institutions where they received only a nominal education.  As Mel Baggs, a non-speaking, multiply-handicapped autistic puts it:  “I spent the majority of my teen years in either no school, institution schools, or special ed. And I knew that to the rest of the world none of us were real.”[19]  In other states, members of these groups were educated either in segregated schools or in separate special education classrooms within regular schools, that focused on communication and “functional” skills.[20]  This meant that many children who were actually quite bright—capable of learning and even excelling at academic subjects—were denied the opportunity to do so by the simple fact of their diagnosis and educational placement.  The educational goal had become simply to have them exhibit fewer “bizarre autistic behaviors,” and perhaps learn a few self-care skills.  And sadly, this remained the goal in many places well beyond 1990.

[1] Cited by Ruth Colker, Disabled Education:  A Critical Analysis of the Individuals with Disabilities Education Act (New York:  New York University Press, 2013), pp. 25-26.

[2] E.g., Burton Blatt and Fred Kaplan’s Christmas in Purgatory:  A Photographic Essay on Mental Retardation (privately distributed, 1966; republished 1974 by Human Policy Press in Syracuse, NY); Bill Baldini’s television reporting on Pennhurst State School and Hospital in East Vincent, PA, 1968; Geraldo Rivera’s television reporting on Willow State School for the developmentally disabled on Staten Island, NY, in 1972.

[3] Pete Wright, “The History of Special Education Law,” on the Wrightslaw website:  http://www.wrightslaw.com/law/art/history.spec.ed.law.htm.

[4] Ruth Colker, Disabled Education:  A Critical Analysis of the Individuals with Disabilities Education Act (New York:  New York University Press, 2013): see pp. 17-43 on the EAHCA.

[5] Marjorie Coeyman, “Leaving No Child Behind is Expensive,” Christian Science Monitor 12/26/2001, p. 19; Christina Samuels, “Special Ed. Law Wrought Complex Changes,” Education Week 35:12 (November 11, 2015).

[6] The statistics commonly used in the 1970s (based on research from the 1960s) placed the prevalence of autism at somewhere between 2 and 4.5 out of every 10,000 people.  Compare this with today’s prevalence statistics, which identify roughly 1.5 out of 100 people as autistic:  https://spectrumnews.org/news/algorithm-automates-efforts-estimate-autism-prevalence/.

[7] E.g., James McDonald and George Sheperd, “The Autistic Child:  A Challenge for Educators,” Psychology in the Schools 13 (1976), 248-56; Glen Dunlap,Robert Koegel, and Andrew Egel, “Autistic Children in School,” Exceptional Children 45 (1979), 552-58.

[8] 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.58.

[9] Jean Mack, “An Analysis of State Definitions of Severely Emotionally Disturbed” (pamphlet), (Reston, VA: Council for Exceptional Children, 1980), p. 10; J. Gregory Olley, “Organization of Educational Services for Autistic Children and Youth,” in Barbara Wilson and Anneke Thompson, eds., Critical Issues in Educating Autistic Children and Youth (Washington, DC:  United States Department of Education, 1980), pg. 13.

[10] Joan Schoepke, “Autism,” in Resource Manual on Disabilities, ed. Polly Edmund, Sue Peterson, et al., (Minneapolis:  Pacer Center, 1985), p. 89.  Oddly, in 1982 Hawaii shifted autism from the “emotionally disturbed” category to “other health impaired:”  Memo from Donnis H. Thompson (State Superintendant of Education) to District Superintendants, Principals, Special Services Teams and Special Education Teachers, “Addendum to “Programs and Services for the Orthopedically Handicapped and Other Health Impaired” Section of “Program Standards and Guidelines for Special Education and Special Services in Hawaii” (September, 1982).  The argument was that autism was distinct from mental retardation, emotional disorder, or learning disorder, and the only remaining category was “other health impairment.”

[11] Glen Dunlap,Robert Koegel, and Andrew Egel, “Autistic Children in School,” Exceptional Children 45 (1979), 552.

[12] See my earlier posts on “Autism and Intelligence.”

[13] Sam B. Morgan, “Understanding the Diagnosis of Autism:  Initial Counseling of Parents and Other Family Members,”, Meeting Their Needs: Provision of Services to the Severely Emotionally Disturbed and Autistic:  Conference Proceedings (Memphis, TN, 1984), pp. 48-49.

[14] “What Were You Diagnosed with in the 80s?” on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=243365

[15] Posts by One A-N and TalusJumper to the “What Were You Diagnosed with in the 1980s?” discussion on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=243365.

[16] “What Were You Diagnosed with in the 1980s?” discussion on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=243365.

[17] MusicIsLife2Me, “My Possible Wrong Diagnosis of Mental Retardation” on Wrong Planet:

http://wrongplanet.net/forums/viewtopic.php?t=217277.

[18] Charles Martel Hale, Jr.  “I Had No Means to Shout” (Bloomington, IN:  1st Books, 1999), p. 25.

[19] Mel Baggs, “Empty Mirrors and Redwoods,” published May 12, 2014 on the Ballastexistenz blog:

https://ballastexistenz.wordpress.com/2014/05/12/empty-mirrors-and-redwoods/.

[20] See the data provided by Douglas Biklen, “The Myth of Clinical Judgment,” Journal of Social Issues 44 (1988), pp. 132-33.

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.

Joy and Autism 1

 

The most widely disseminated public narratives about autism outline the “tragedy” of the condition—the despair and misery it supposedly creates, especially among the parents of children with autism.  These narratives were brought to special prominence in the controversy surrounding Autism Speaks’s notorious 2009 ad campaign “I Am Autism,” but they are also extremely common in the titles of books and articles, as well as in everyday conversation.  The fact is, however, that many parents of autistic children find their family life far from “tragic.”  And more importantly, many autistic people describe their own lives in very positive terms, while still acknowledging the difficulties they face.

I wanted to start this series of posts on autism and emotion with a discussion of joy, because—although the word seldom appears in media accounts of autism, and although the emotion itself has seldom been studied by researchers on autism—autistic people themselves often write about joy, about the delight and deep pleasure they find in their special interests, in the sensory world around them, and especially in the practice of “stimming.”

Here is the incomparable Julia Bascom, in a blog post that has circulated widely within the neurodiversity community, entitled “The Obsessive Joy of Autism”:

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. . . .

It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.[1]

The very intensity of the autistic experience—the heightened sensory experience, the deep focus on special interests, the broad awareness of multiple stimuli—can cause considerable distress when beyond the individual’s control, but it can also give rise to astonishing experiences of beauty, delight, sensual pleasure, and joy when the individual can make use of that experience for her or his own ends.

Such moments of delight are achieved primarily through what scientists often describe dismissively as “stereotypic” or “repetitive” behaviors—hand flapping, rocking, spinning, bouncing, etc.  For many years, autism therapists tried to eliminate these behaviors, in an attempt to “normalize” autistic people.  The mantra “quiet hands” was regularly chanted in special education classrooms.  More recently, scientists and autism professionals have begun to recognize the importance of “self-stimulatory behaviors” (another scientific term for these actions) as a calming response to stressful situations.  It has therefore become less common for therapists to try to eliminate them completely, although it is still usually recommended that they encourage their clients to self-soothe in more “socially acceptable” ways (by playing with fidget toys, sitting in special chairs, etc.), rather than by the means of their own choosing.  However, I have never seen a scientist, teacher, or therapist recognize the importance of self-stimulation as a source of positive, indeed deeply positive, emotional experience.

The value of “stimming” is, however, a frequent theme of autistic writing (which scientists and other professionals who wish to understand autistic experience would do well to consult).[2]   Rocking, hand-flapping, and spinning are not only responses to distress, but also, and much more importantly, forms of play.  They provide intense satisfaction, mental stimulation, and sensory delight to autistic adults as well as children:

“When I flap I get a feeling of overwhelming joy and creative thoughts and images come from no where. My brain functioning becomes super fast and I can create perfect images or beautiful sentences in my mind.”[3] 

“I have difficulty regulating many of my body functions such as heat and cold or being overwhelmed by too much motion, light, sounds, etc. but I have access to a deep, deep, deep joy by manipulating movement, light, sounds, etc. on my own.[4]

“In the past year I have rediscovered the joy of stimming. I have unearthed a playfulness within me that I thought was lost.”[5]    

This “obsessive joy” is a wonderfully positive thing—that should be encouraged in autistic children and celebrated in autistic adults.  It can, however, also have an addictive quality, which I will discuss in my next post.

 

 

 

[1] Julia Bascom, “The Obsessive Joy of Autism,” Just Stimming blog (https://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/

[2] http://what-is-stimming.org/links/

[3] October 7, 2010 comment by “NothingsWrongWithMe” on “Understanding Hand-Flapping and What to Do (Or Not Do) About It,” on the Aspiring Dad blog (https://aspiringdad.wordpress.com/2008/01/30/understanding-hand-flapping-and-what-to-do-or-not-do-about-it/)

[4] “I is for Identity-first Language” April 10, 2015, on the Unstrange Mind blog (https://unstrangemind.wordpress.com/2015/04/10/i-is-for-identity-first-language/)

[5] “At the Intersection of Gender and Autism—Part 3” December 4, 2014, Musings of an Aspie blog (https://musingsofanaspie.com/tag/girlhood/)

 

Dear Neurotypicals: What if you use your words? — Yes, That Too

 

WOW!

 

If we don’t use our words, we won’t be indistinguishable. (What’s wrong with saying, “use your words”? Many, many things, including the part where it’s ignoring communication that you actually did understand because you didn’t like how it was phrased. Thanks, Neurodivergent K.)But it’s not just about words, is it? Once we’re using words, you want…

via Dear Neurotypicals: What if you use your words? — Yes, That Too

Autistic Intelligence, Part 2

 

In his excellent book Neurotribes, Steve Silberman has described in detail the development of autism research in England, especially at the Medical Research Council in London, during the 1970s and 1980s. Members of the MRC were familiar with the disorder Leo Kanner had described back in the 1940s. They occasionally observed cases of “infantile autism,” “childhood schizophrenia,” or what they often simply called “Kanner’s Syndrome” when they visited institutions for the insane or “feeble-minded.” However, the MRC also conducted field work, primarily within London, and this made MRC researchers aware of a larger number of children attending ordinary schools and adults living more or less independently, who appeared to share many of the characteristics of institutionalized autistics. It was difficult to know how to diagnose these children and adults, but if they had no diagnosis, they would also have no access to public services which might have helped them.

 
The re-discovery of the writings of Hans Asperger gave the MRC researchers the tools with which to understand what they had seen in the field. In Vienna before World War II, Asperger and his colleagues had studied a large group of children who suffered from what they called “autistic psychopathy.” Unlike Leo Kanner, Asperger did not consider this condition to be very rare—in fact, he argued that some traces of autism could be found in most creative thinkers. Moreover, he included children with a fairly wide variety of symptoms and skills within the group he labeled “autistic.” Asperger had given lectures, but had published nothing on his research before the Nazis murdered most of his patients. Later in the war, Asperger managed to re-establish a small school, and began to publish some of his findings, but the school, along with most of his research records, were destroyed by Allied bombers in 1944. What little of his work had appeared in print was in German-language publications little known among English speakers. As a result, Asperger’s ideas had virtually no influence in the United States and Great Britain in the decades immediately after the war.

 
But in 1971, a Dutch researcher published (in English) a comparison of Kanner’s syndrome (still identified as a mental illness) and Asperger’s “autistic psychopathy” (which the researcher considered a personality type).  Through this article, the MRC researchers finally became aware of Asperger’s ideas, and they soon realized that his broad definition of autism might help resolve some of their diagnostic problems. In particular, psychiatrists Lorna Wing and Judith Gould, working with data from the Camberwell district in London, found the expected tiny number of children with “Kanner’s syndrome,” but also a much larger group who had significant problems with communication and social interactions, and who exhibited some of the same “repetitive” behaviors as autistics, but nevertheless did not fit Leo Kanner’s strict criteria for “autism.” Some members of this larger group did, however, fit Asperger’s description of “little professors,” who could talk learnedly about subjects that interested them, but still struggled in everyday interactions. (Still others fit into no existing diagnostic category.) Their findings led Wing and Gould to suggest that there might actually be not a single form of autism, but rather a “continuum” of conditions involving what they considered to be a characteristic autistic “triad of impairments” (communication, social interaction, repetitive behaviors). Wing later replaced the word “continuum” with “spectrum”—and this has become the standard way of referring to autistic disorders.

 
When Wing wrote about what she christened “Asperger’s syndrome” in 1981, she introduced to the English-speaking world a group of autistic people who were highly—often overwhelmingly–verbal. Nevertheless, in keeping with the standard expectations of all autism researchers in both England and America at the time, Wing belittled the intelligence of her subjects:
Asperger described people with his syndrome as capable of originality and creativity in their chosen field. It would be more true to say that their thought processes are confined to a narrow, pedantic, literal, but logical, chain of reasoning. The unusual quality of their approach arises from the tendency to select, as the starting point for the logical chain, some aspect of a subject that would be unlikely to occur to a normal person . . . Usually the result is inappropriate, but once in a while it gives new insight into a problem. Asperger also believed that people with his syndrome were of high intelligence, but he did not quote the results of standardized intellectual tests to support this. As will be seen from the case histories in the Appendix, the special abilities are based mainly on rote memory, while comprehension of the underlying meaning is poor. Those with the syndrome are conspicuously lacking in common sense.
This condescending statement almost certainly does not do justice to the real intelligence of those Wing studied. It does, however, recognize (for the first time in the English-speaking world) that some people on the autism spectrum had the capacity for logical thought. They may have been “lacking in common sense,” but they were clearly not “mentally retarded.” Wing and Gould’s research thus opened the door for further investigation of autistic intelligence–and in particular for critiques of the value of “standardized intellectual tests” for evaluating that intelligence. Those critiques will be the subject of the next post.

 

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.