Tag Archives: Human Rights

Teaching Autistic Children: Perceptual Issues

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

 

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

 

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

 

 

 

 

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

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

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

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

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

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

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Henny Kupferstein’s Research Study

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

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

I think the results should be extremely interesting.

 

 

The Education of Autistic Children, 1950-1975

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

 

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

 

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

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

 

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

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

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Back Again

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

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

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

Autistic Intelligence, Part 1

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

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

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

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

 

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

Justifications

Whenever a person with autism is denied a living wage, educational accommodations, necessary health care, or just plain respect, it is always possible to find some spurious justification for that denial.  “Autistic people lack empathy.”  “Autistic people have no self-control.”  “Autistic people are too stupid to learn.”  “Autistics hate other people.”  Try googling phrases like these and you will rapidly find yourself becoming depressed.  They are all over the internet and all over face-to-face communications as well.  So before we talk about rights, lets have a look at these justifications and how much validity they really have.

 

Shifting Gears a Bit

Haven’t posted anything here in almost two years. You would have thought I would have plenty of time for it after I retired from my paying job. And yet, oddly enough, the chaos around here has only increased since 2014. Autistic daughter is now in college and doing well (even though we’re averaging at least two trips to the college every week to bring her things she absolutely HAS to have this very minute, along with roughly 500 text messages a week, mostly asking for help with executive function stuff). ADHD daughter is weathering the storms of high school, despite the concussion from being dropped on her head by the other members of the cheerleading squad. The dog ages, but hasn’t slowed down. And the cat is as bloody as ever.

Despite retirement, I’ve just been too busy to pay much attention to this blog. But I have been doing a lot of research and a lot of thinking over the past two years, and gradually a book has begun to emerge in my head. I think it’s time for a serious and systematic look at autism and human rights—at the ways in which autistic people (or people with autism, if you prefer) are routinely denied their right to live with dignity and without unnecessary pain, as well as their right to equal treatment under the law. I also want to look at the many ways in which they and their families are fighting back against a system that offers few accommodations even to autistic children, let alone adults.

I plan to try out some of the material for the book here, in front of what I hope will be a sympathetic audience. I welcome comments and criticisms (of the kindly sort) from anyone. So while there will still be updates here on our girls, the animals and my poor beleagured husband (who hasn’t retired yet), there will also be bits of chapters that I’m working on. I hope you will find them interesting (please let me know if they are WAAAAYYYY too boring . . .).