Tag Archives: Autism and Human Rights

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.

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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