Tag Archives: Special Education

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.

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The Challenges Facing Autistic Children in America’s Schools

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

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

 

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

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

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

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

 

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

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

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

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

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.

Help on Education and Sensory Issues

This is a personal post, but it is also directly related to what I’m writing about autism and education.  It has to do with sensory issues (specifically, auditory and visual processing disorders, both of which are quite common among people on the spectrum) and their impact on education.  I have been working my way through education and special education journals, and have yet to see a single article on this subject.  I would really appreciate any personal stories people might have about how they dealt with their own processing issues in school.  I would also love to hear from teachers who know how to work with these issues.  However, back to the personal part.

A, my amazing daughter on the spectrum, is now at university, where she is doing a fantastic job–except for being stuck in math limbo.  She has switched her major from Special Education (which required one math course) to Psychology (which requires a different math course).  Even though she is good at math (not a prodigy, but way better than average), she has not yet been able to complete either of these math courses, and this is holding her back from work in her major.

Math course #1 (for Special Ed), was math concepts for future teachers.  It actually sounded really interesting.  Unfortunately, it was taught entirely through group work, in a crowded room with poor acoustics.  A has an auditory processing disorder (diagnosed early in life), which makes it very difficult for her to follow what’s going on under those circumstances.  Because she couldn’t hear, she couldn’t finish the math course.  This was one of the reasons she changed her major.

Math course #2 is the course her college requires before she can take the Psychology statistics course.  Now, as it happens, she already took (and got an A) in statistics at our  local community college while she was still in high school.  The university gave her credit for that course, but the Psychology Department won’t accept it as THEIR statistics course for reasons that we still can’t figure out.  So she needs to take their stats course.  But before she’s allowed into that course, she needs to take a sort of fundamentals of math course.

It’s possible to place out of the course if you either get a high enough score on the ACT or SAT exam, or if you do well enough on the university’s own placement exam.  This has proved impossible because of her visual processing disorder.  We knew she was having visual issues for years, but she was only diagnosed fairly recently with Meares-Irlen syndrome, which makes words and numbers dance around on the page she’s trying to read.  She has no problem reading text on her Kindle, because it allows her to increase the font size and the spacing between lines to limit the confusing movement.  But the placement exam is given ONLY on the  university’s computer, with no way to compensate for the visual problems.  So–after three unsuccessful tries at the placement exam, she has been relegated to a remedial math course, which will allow her to take the fundamentals course, which will then finally allow her to take the statistics course that she already passed in community college two years ago.

See why we’re frustrated??!!

Back Again

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

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

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