Educational Legislation, 1986-2004

I’ve been wrestling for a while with the organization of this next section. 

I’ve decided to write about legislation here, and save discussion of what actually happened in the classroom for future posts.

 

Revisions in the Education for All Handicapped Children Act (EAHCA) re-shaped the educational rights of children with disabilities in significant ways after 1975, and especially between 1986 and 2005.  To review all the relevant changes would take too much time, so I will focus here on those that most directly affected children with autism.

 

In 1986, EAHCA was revised and reauthorized (Public Law 99-457) to add early intervention programs for infants and toddlers with disabilities.  For children diagnosed with autism, such intervention usually took the form of speech, physical, and occupational therapies, but also sometimes included Early Intensive Behavioral Intervention (EIBI), based on the principles of Applied Behavioral Analysis (ABA), as developed by Ivar Lovaas and then modified in various ways by other researchers.  In the early 1990s, there was still considerable resistance to EIBI among special educators.[1]  By 2000, however, EIBI (often identified simply as “ABA”) had become the most frequently recommended form of early intervention—despite the problems it presented for children’s well-being (see my previous posts on “The Normalization Agenda”).  However, even when offered for less than the 40 hours per week recommended by Lovaas, EIBI remained very expensive.  A cost-effectiveness study done in Pennsylvania in the late 1990s estimated that between $33,000 and $50,000/year would have to be spent to provide a child with EIBI.[2]  These high costs were seldom covered by insurance, and few families could afford them.  During the 1990s, a growing number of parents tried to get school districts to provide EIBI, but with only limited success.[3]  It is not clear, therefore, what percentage of children diagnosed as autistic actually underwent EIBI between 1986 and 2005.

 

In 1990, Congress not only revised the EAHCA, but also re-named it the Individuals with Disabilities Education Act (IDEA)—in keeping with the language of the recently passed Americans with Disabilities Act.[4]  The 1990 re-authorization spelled out in greater detail how plans for each student (Individualized Education Plans, or IEPs) would be developed and implemented.  It also added transition plans for those leaving high school, so that public schools now offered services from infancy through adulthood.  Most importantly for our purposes, though, IDEA also modified the list of disabilities covered by special education law.

 

The 1975 Education for All Handicapped Children Act had used a list of disability categories drawn from even earlier legislation.  The list did not include the still rarely diagnosed condition known as autism—which is why the classification of autism remained under debate in educational circles throughout the late 1970s and 1980s (see my earlier post on “Educating Autistic Children 1975-1990).  In 1990, however, IDEA listed thirteen categories of disability under which children could qualify for special educational services, and for the first time autism was one of these categories.  In the congressional report on the act, autism was defined as a developmental disability, and explicitly distinguished from mental illness.  This had a significant impact on the experiences of students with an actual autism diagnosis (still by no means all of those who actually had autism), because they now lost the highly stigmatized “emotionally disturbed” label that had followed them in many places during the 1980s.

 

The addition of autism to the list of disabilities covered by federal education law probably contributed to the rapid rise in autism diagnoses during the 1990s.  A major factor in this rise was the broadening of diagnostic criteria, to recognized the existence of Aspergers Syndrome, PDD-NOS, and other forms, as well as “classic” autism—more people now fell within the autism “spectrum” than in the past.  Another reason for the increase in diagnoses was the fact that more professionals in a position to recommend or provide diagnoses were becoming familiar with the condition, through popular books and movies, as well as through scientific papers.  Not only doctors and psychologists, but school districts played a role in identifying autistic children during the 1990s–both because of educators’ growing awareness of the condition, and because federal education law required (and still requires) school districts to identify children with disabilities within the area under their jurisdiction–the “child find” requirement.  The reasons for the change may have been complex, but the reality was clear.  Autism had still been considered a fairly rare condition in 1990, affecting less than 1 out of 1,000 people.[5]  By 2000, however, the Centers for Disease Control’s Autism and Developmental Disabilities Monitoring Network reported an average prevalence of  6.7 per 1,000.[6]  In other words, by 2000, the prevalence of was considered to be seven to eight times higher than in 1990.  As the overall prevalence of autism rose, so too did the the number of children receiving special education services specifically for autism:  the number was 22,664 children in 1994; by 2005, it had increased more than eight-fold, to 193,637.[7]  The rapidly increasing number of children being provided with services for autism had a major impact on both the children and their school systems, which will be considered in future posts.

 

In 1997, IDEA underwent a major overhaul.  Some of the changes were beneficial for children with disabilities.  Educational rights and procedures were clarified, making it easier for parents to obtain services for their children, and for schools to determine how requests for services should be dealt with.  Language was added that encouraged higher expectations, better services and increased inclusion in general education classrooms.  Particularly important was the new requirement that children with disabilities should be included (with appropriate acccommodations) in statewide assessments.  This gave schools a financial interest in ensuring that these children received a decent education.  At the same time, the IDEA act of 1997 strengthened school districts’ rights to discipline children with disabilities–especially if they engaged in violent or threatening activity or drug use, but even if they were simply disruptive (or were simply considered disruptive).  During the late 1990s issues of classroom management and student behavior became especially salient in public debate and in struggles over practice—and the behavior of children with disabilities came under special scrutiny.  In May, 2000, for example, the new senator from Alabama, Jeff Sessions (now Attorney General of the United States), in one of his first speeches on the senate floor, attributed the decline of “civility” in public schools to the disruptions caused by disabled children now included in general education classrooms. (The subject for another post.)

 

Concerns about “accountability,” about making sure that schools provided a real education for all students, were already reflected in the 1997 reauthorization of IDEA, but they featured more clearly in the No Child Left Behind Act (NCLB) of 2001.  NCLB was a reauthorization of the Elementary and Secondary Education Act of 1965, and was aimed at all public schools receiving federal funding.  These schools were now required for the first time to make Adequate Yearly Progress (AYP), as measured primarily by the scores its students achieved on statewide standardized tests.  The law took into account not only the student body as a whole, but also three specific groups within each school:  children with limited English language proficiency, economically disadvantaged children, and children with disabilities.  95% of each group had to participate in the standardized test for it to be considered valid; test results for each group had to be reported separately to the Department of Education, to ensure that “no child” in any of these categories would be “left behind.” Schools that failed to make AYP over several years were subject to increasingly severe corrective actions, which might in extreme cases include replacement of the entire staff, closing the school down, or transforming it into a charter school.  At the same time, No Child Left Behind required that all teachers be “highly qualified,” with the minimum acceptable qualifications set by the act itself.  NCLB was a deeply controversial act, and its implementation was fraught with all sorts of complex problems and legal actions.  However, it did reinforce the legal principle that public schools were obliged to educate, not merely warehouse, children with disabilities.

 

Finally, IDEA itself was reauthorized in 2004, with a new emphasis on how disabled children were to be helped.  NCLB had required that all public school teachers be “highly qualified;” IDEA 2004 applied the same standard to special education teachers—they had to have a bachelor’s degree in special education, and be certified or licensed as special educators by the state they taught in.  In addition, if they were going to teach core academic subjects such as math, science, English, and foreign languages, they had to demonstrate “competence” in those subjects. The 2004 reauthorization focused on what teachers did as well as on their qualifications.  Individualized Education Plans (IEPs) for students with disabilities should now include only instructional methods and other interventions supported by scientific research which had gone through a process of rigorous peer-review.  This “evidence based” requirement was imposed primarily for the benefit of students with learning disorders, but it applied to all children with disabilities, including those with autism.

 

By 2005, then, more autistic children than ever before were being served by the American public school system.  By law, these children were entitled to a “free, appropriate, public education,” provided in the “least restrictive environment.”  They were supposed to be taught by “highly qualified” teachers, using scientifically validated instructional methods, and their progress was to be assessed in the same way as that of neurotypical students.  However, there is always a significant gap between what laws require and what actually happens.  This is true in education as much as in other areas of life.  The actual experiences of autistic students in American schools from the 1990s to the present day has been much more complex and from many perspectives less satisfactory.  These experiences will be the subject of the next few posts.

 

 

 

 

[1] Phillip Strain and Scott McConnell, “Behaviorism in Early Intervention,” Topics in Early Childhood Special Education 12 (1992), 121-42.

[2] John Jacobson, James Mulick, and Gina Green, “Cost-Benefit Estimates for Early Intensive Behavioral Intervention for Young Children With Autism—General Model and Single State Case,” Behavioral Interventions 13 (1998), 201-26.

[3] Mitchell Fell and Erik Drasgow, “Litigating a Free Appropriate Public Education: The Lovaas Hearings and Cases,” Journal of Special Education 33 (2000), 205-14; see also Claire Maher Choutka, Patricia T. Doloughty, and Perry A. Zirkel, “The “Discrete Trials” of Applied Behavior Analysis for Children with Autism:  Outcome-Related Factors in the Case Law,” Journal of Special Education 38 (2004), 95-103.

[4]  Ruth Colker, Disabled Education:  A Critical Analysis of the Individuals with Disabilities Education Act (New York:  New York University Press, 2013), p. 88.

[5] See, for example, Lorna Wing, “The Definition and Prevalence of Autism:  A Review,” European Child and Adolescent Psychiatry 2 (1993), 61-74—based on estimate from a variety of countries including the United States.

[6] Centers for Disease Control, “Prevalence of Autism Spectrum Disorders,” Morbidity and Mortality Weekly Report 56 (February 9, 2007), p. 8

[7] Centers for Disease Control, Prevalence of the Autism Spectrum Disorders (ASDs) in Multiple Areas of the United States, 2000 and 2002 (pamphlet based on the Morbidity and Mortality Weekly Report for February 9, 2007, with additional data), p. 5.

 

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.

The Normalization Agenda, Part 2

Please note:  this is the second part of a talk I will be giving this Friday to a clinical psychology program.  I would be very grateful for comments, corrections, etc.

(Continuing from Part 1)

From here on, there will be a lot of quotations from the writings of these autistic adults, because I want them to be able to speak for themselves about their situation.  Perhaps I should mention that their language often draws on several pre-existing discourses, including those of the civil rights, LGBT rights and broader disability rights movements.  As Cynthia Kim, author of a well-known blog called Musings of an Aspie, notes:

“The concept of passing originates in racial identity. In societies where being classified as a certain racial group leads to discrimination (or worse), some members of that group may present as members of a different racial group. For example, some people with African ancestry passed as Arab or Native American to avoid segregation in the US. Some people of Jewish ancestry passed as Aryan in Nazi Germany to save their lives.  Today, people with hidden disabilities are said to pass when they present in a way that conceals visible signs of their disability. Many autistic people make a conscious effort to pass. Not stimming visibly is a way of passing. Giving the “right” answers to the social communication questions on a job screening test is a way of passing. Going out for a beer with workmates when you’d rather go home and curl up in front of the TV is a way of passing.”

In the writings of autistic adults, both activists and non-activists, “passing” is shorthand for “still autistic, but able to appear “indistinguishable” from neurotypical.  Autistics also often describe “being in the closet,” and sometimes “coming out” to a few close friends (or more rarely, to an employer).[1]  In other words, they use the language of other groups who have historically suffered from discrimination, to distinguish what they see as their “real” identity from the learned identity they must assume in order to survive in the world.

These adults clearly recognize how essential the skill of “passing” is to success in life.  Passing opens the doors to education, employment, housing, independence.  Judy Endow, an educational consultant and well-known speaker on autism, writes a blog called Aspects of Autism Translated.  She is an older woman, who did not have early intervention available to her when she was young—instead her family committed her to a psychiatric institution.  Judy—who is very, very bright—taught herself social skills to escape institutionalization, to escape from poverty and homelessness in her early adulthood, to learn to raise her own autistic kids, to obtain college and graduate degrees, and finally to establish a satisfying career.  She learned to “pass” as normal because she had to, and she points out in her blog the many ways in which passing has been useful to her and to other autistics.  But like most other autistic writers—and unlike most scientists and professionals–she also recognizes that passing has a high cost for those whose neurology remains autistic:  “I know in the field of autism we have made it our goal to get autistics to look neurotypical . . . Many people congratulate themselves when it happens. I am here to tell you . . .  that this may NOT wind up to be a good thing for autistic people.”[2]

But why not?  What’s wrong with learning to act “normal”?   Well, to begin with, when very young children (pre-schoolers, children as young as 2 or 3) are taught–through 40 hours a week of intervention, in the case of classical ABA, or perhaps 20 hours a week in many contemporary interventions—to repress their instincts and act in socially acceptable ways, they simultaneously learn that their natural instincts and behaviors are wrong.  Why else would adults spend so much time extinguishing those behaviors?   “. . . intensive ABA therapy, “writes Sparrow Rose Jones, “will . . . teach a child that there is something fundamentally wrong and unacceptable about who they are. Not only is that child trained to look normal, they are trained to hate who they are inside. They are trained to hate who they are and hide who they are. . . .  All those years of ABA therapy will have taught them that they are fundamentally wrong and broken.”[3]

This is the unspoken message of the intervention itself, which the autistic child will learn alongside facial recognition and social skills, unless the therapist and the parents involved take great care to counteract it.  Sadly, however, far too many parents, desperate for their child to become “normal,” actually reinforce it.  Here is Larkin Taylor-Parker, now a young adult, describing  her fairly recent experiences:  “Learning to pass took me years of practice with a special method: every time my family went out in public when I was a child, the ride home was a lecture on my failings. I was upbraided for gait, demeanor, eye contact, manner and content of speech. The reward for perfect success was a moment of rare parental affection.”[4]  Similarly, Amethyst Schaber, who produces the fantastic Ask an Autistic videos on Youtube, writes:  “Imagine being told every day of your life that who you are is bad, shameful, and broken. Imagine that the people who love you the most and who are supposed to support you, your family, insist that you have to pretend to be someone else every day for the rest of your life.”[5]

Even after early intervention comes to an end, the view that autism is a shameful defect is constantly reinforced by public messages.  The infamous Autism Speaks campaign from 2009, called “I am Autism,” reminded older autistics that they were to blame for publicly humiliating their relatives, and bankrupting their families—not to mention breaking up their parents’ marriages.  The video is no longer on Autism Speaks’ website, but the messages that well-known organization, let alone some of the other, even crazier organzations, purvey have not improved.  Their publicity campaigns and public events all focus on “preventing” and “curing” autism—that is, at making autistic people disappear from our society—rather than on helping people with autism live successful and happy lives. As Jocelyn Eastman, who writes the Art of Autism blog, puts it:  “We are portrayed as broken and as needing to be cured. We have had people tell us to our faces that they would rather have a child die of a preventable disease than to have their child become autistic. We have had people tell us that they can’t wait for prenatal testing so that people like us can be aborted, and that we won’t have to be burdens anymore. All the while, we are expected to accept that others feelings about autistic people are acceptable and understandable. . .”[6]  As a result, even adults who have learned to behave normally often suffer from internalized shame, simply for being autistic.

That shame is accompanied by constant anxiety about being exposed as autistic.  And such anxiety sets in at a very early age:  “Being aware of the dissimilarities between me and my peers didn’t make things any easier,” writes Nicole Wildhood, in an article written for The Atlantic magazine.  “ . . .  the awareness made me hyper-vigilant about appearing ‘normal,’ and so all the more anxious. By age 5, I had begun a high-level construction project, creating a new outward-facing version of myself to fit with the social norms I perceived. . . .”[7]   Anxiety is a very significant problem for people with autism, for a variety of reasons.  But social anxiety, resulting from pressure to “maintain the act,” is a major stressor for adults.  This is what Joseph Galbraith has to say about this anxiety:  “For the majority of my life, I was so concerned with, and so preoccupied with passing, so terrified of saying or doing the ‘wrong thing’ and being ‘discovered’ as neuro-divergent that this neuroses took up almost all of my mental energy.  The majority of the time was spent second guessing everything I said, and everything that I did.  My entire mental energy was consumed with ‘putting up a false image’ one that would be accepted by those around me.”[8]

And this brings me to the most important “cost” autistic people pay for passing as “normal”:  simple exhaustion—exhaustion to the point of incapacity, of complete burnout.  In the absence of a “normal” neurology, it actually takes a tremendous amount of mental and physical energy to maintain the façade of normalcy. And the energy taken up by that process is not available for work, for play, even for self-care.  Here is a particularly rich discussion of this issue, written by Kassiane Sibley, in a piece that has often been cross-posted and referenced by members of the autism community, called “The Tyranny of Indistinguishability.”  It’s a long quote, but I want to read the whole thing because the language is so evocative.  I should explain that it begins with a word often used by the online autistic community:  “allistic”—meaning someone who is not “autistic.  So here is what Kassiane has to say:

“The Allistic Emulator software we run on our Autistic operating system needs constant attention. Have you ever run an emulator program? Like all of them, mine is slow, it is buggy, and it takes up processor power that’d be better off being devoted to another task. And it constantly needs upgrading to perform anywhere close to spec. . . .  When I gave a shit about my safety & about the people who taught me this–which was everyone in my life in my youth, as that’s how these things tend to work–I was constantly upgrading my emulator. Constantly relearned more in depth performances. It made me tired, anxious, cranky, and it failed frequently. The failures were distinguishable in the worst kind of way.  Failures were marked in tears. In full on meltdowns. In self loathing and self injury. Inability to do anything–eat, sleep, move–because of exhaustion and inertia. Did I mention self loathing? Severe anxiety. Self isolation (if I do it first they can’t!). Intimately detailed, ritualized recitations of all the ways I failed at being a human being. Because keeping up the act of humanity is what is required to be thought of as human. How very Lovaas.  So much energy was put into being a real person that I didn’t have the cognitive capacity to do as well as I could at any of a number of things. Between the day to day facade and flat denial of my visual support needs, all my learning bandwidth was diverted into running my shitty, self defeating emulator”.[9]

In childhood, all of Kassiane’s “learning bandwidth” was taken up by the effort to act “normal,” so she didn’t have the cognitive capacity to engage as well as she could in other activities.  But this effort does not, cannot stop with childhood.  The “emulator software” requires constant maintenance and upgrading throughout adult life, sucking away energy that might be devoted to other, more productive activities.

Adult autistics trying to pass have to focus intensely on all kinds of things most of us never even consider.[10]  If they are lucky enough to have a paying job, for example, they need to get their work done, while also keeping the “allistic emulator” going without respite.  They have to work while dealing with the demands of their autistic neurology, without ever revealing that they are autistic—because “coming out” as autistic is likely to cost them their job.  Simply getting to work can be overwhelming:  riding a bus, for example, requires not only dealing with unpleasant sounds and smells, but also keeping track of somewhat unpredictable multi-step procedures—a struggle for people with executive functioning issues.  You have to find the right bus stop, get on the right bus, pay the fare, move through the crowd on the bus to look for an available seat, watch for the right stop, move through the crowd again to get off, get from the bus stop to the work site, etc.  Once you get there, there will be multiple sensory challenges.  Flashing lights on computer screens and overly-bright fluorescent lights (which also, by the way, make a low level buzzing noise many autistics find intolerable) create headaches and dizziness.  The constant “background” noise as people in the room talk on the telephone or to each other, is never actually in the background for an autistic person, and it makes it difficult to distinguish what your boss is trying to say to you.  Intense smells in the bathroom and lunch room make you feel sick to your stomach.  You can never ignore the uncomfortable tightness or scratchiness of work clothes.  Just maintaining the correct physical appearance can be a significant problem.  Scott Monje, who writes the Shaping Clay blog, talks about how he has to “artificially hold” his face, for hours, to hide the fact that his eyes are not symmetrical and that his mouth naturally twists so that one side is open.[11]

Employment also involves a multitude of supposedly simple social interactions–involving eye contact, small talk, and constant snap judgments about appropriate responses, all of which can provoke intense anxiety.  “I am exhausted at the end of a work day,” writes Judy Endow, “because it takes a great deal of effort for me to continually stifle my reactions to sounds, sights, smells and movements that others do not typically notice. I have to particularly pay attention to conventional social mannerisms such as remembering to look at people during conversation, track which words are “work words” and which words are “social fluff words” and respond accordingly. I work at this because I like to be able to fit in and in many respects my continued employment depends on it.”[12]

Autistics trying to “pass” as neurotypical  at work cannot use their best coping mechanisms—they can’t use stimming to release tension, or have a complete meltdown on the bus–because this will break through the neurotypical disguise and reveal the autistic beneath.  (The meltdown on the bus may also lead to a police call and involuntary hospitalization.)  So these adults suck it up and keep trying to pass.  But, as one autistic blogger puts it:  “What [the people around me] don’t see is my suffering. They don’t know that sometimes I am panicking on the inside or going through sensory overload right in front of them. How could they? . . .  I learned to hide these things years ago. Nobody sees me freaking out, knows when I am having stomach issues, or my head is pounding from the florescent lighting of the office I work in two to three days a week.  I don’t complain. I smile, push forward, pull up my big girl panties and do what I have to do to make sure that I am able to provide the best possible life for myself.”[13]  The coping comes at home, like this:  “For every hour that we manage to pass, we spend two or three or five recovering. We pull off a great passing act at work and pay for it by needing the whole weekend to recharge. We juggle a full class load like our typical peers and end up overwhelmed to the point of illness by midterms.”[14]  Or like this “Every day when I came home, I would just fall asleep on the couch or on the floor. I didn’t write. I didn’t play video games, even. I just came home and… stopped…”[15]

The harder these autistic adults work at passing, the more exhausted they get; and the more exhausted they get, the weaker their ability to keep up the act.  Scott Monje, whom I mentioned before, is a successful writer and a university lecturer.  But he has trouble keeping his face looking “normal,” and he also has trouble continuing to speak “normally,” as fatigue sets in:

“I can talk for extended periods, but the more tired I get, the more my speech impediment slips out. It starts as a stutter, then I go tonally flat, and eventually I lose control over my enunciation and start to sound like the stereotypical autistic. Usually I also get frustrated and have a hard time keeping myself from shouting when this happens, because I stop being able to say the words I intend to say, and instead I insert similar-sounding but incorrect words, like saying “speak” when I mean “steep”. When it gets really bad, I will be able to see the word in my mind’s eye, as if I was silently reading, but I will not know how to say it out loud.” [16]

In other words, this intelligent, accomplished man who is sometimes able to be “indistinguishable from his peers,” will revert to his natural, non-verbal autistic state when he becomes too tired to keep up the act any more.

Which brings me to the final cost of “passing”: “autistic burnout.”  If you search the PsychInfo database for “autistic burnout,” you will find quite a number of articles concerning burnout as a problem for parents of autistic kids, for special education teachers, even for ABA therapists.  Nothing at all about burnout among autistic adults—except for a single short piece, by an engineer, discussing ways to make the engineering workplace, specifically, more accommodating for autistic engineers.  Psychologists have apparently not considered the possibility that autistic adults might burn out, but it is a very real phenomenon, with serious consequences.  Within the autistic community, “burnout” refers to what happens when maintaining the act of being “normal” simply becomes too exhausting, and someone is therefore forced to abandon work or school or whatever else they were engaged in—sometimes for a few weeks or months, sometimes forever.

Some people refer to burnout as “autistic regression”—because when an autistic person burns out, he or she generally loses the skills learned in those early childhood interventions—the ability to act “indistinguishable” from peers–and reverts to his or her original autistic self.  One person describes what happened when her life became too stressful this way:  “There goes my job and my relationship. I had to move back in with a friend. Now, a year and a half later, I have no other friends aside from the two I’ve limited to online-only contact, barely speak to my family, and panic at the thought of leaving my house. I stim openly in public, wear headphones wherever I go, don’t force myself to do anything that is too overwhelmingly stressful, and… overall just feel ‘more autistic’ than ever.”[17]

Amethyst Schaber, who has experienced burnout and recovery herself, defines autistic burnout as “something that happens to autistic people who have been in a sustained state of anxiety or exhaustion, or to autistic people who have been passing as non-autistic without enough time to be themselves and recover. It is awful. It’s like a mental breakdown, with skill loss and what professionals call ‘regression’ thrown in there too. Many autistics in burnout are depressed and many experience suicidal ideation.”[18]  Or, to put it another way: when autistics “finally crumble from years of hiding their sensory pain and years of performing their social scripts and blaming themselves every time a script doesn’t carry them successfully through a social situation, they will be angry at themselves and blame themselves for their nervous breakdown and autistic burn-out.”[19]  I want you to notice the references here to “anger” directed inward, to depression and suicidal ideation—because these are the most dangerous of burnout’s consequences.

Earlier this year the British Journal of Psychiatry published a Swedish study that looked at the life expectancy of more than 27,000 people with autism.  It contains a lot of troubling food for thought.  The overall finding was that autistic life expectancy is, on average, 16 years less than that of the general population.  The majority of autistics I mentioned earlier—the majority who CANNOT learn to be “indistinguishable” from their peers—account for most of this difference.  The people in this group tend to have co-morbid physical conditions–respiratory problems, heart disease, diabetes, and especially epilepsy—that kill them at an early age.  This group is also more prone to fatal accidents than the people we have been looking at, the ones who have the capacity to act “normally.”  One finding, however, was particularly disturbing.  It is already well known that somewhere between 30 and 66% of all those on the autism spectrum have considered suicide.  What the Swedish study showed is that among those with “milder” forms of autism—that is, among the kind of people I have been talking about today, the ones who can sometimes “pass” as neurotypical—the rate of completed suicide is NINE times higher than it is in the general population.[20]

These folks are killing themselves at appalling rates—and there are things we could be doing about that.  Better diagnosis (especially for girls and women, whose autism is underdiagnosed), better treatments (anti-depressants often have peculiar effects on those with unusual neurologies), better access to health services, in settings that don’t create sensory or social stress.  Greater efforts to curb bullying of autistic children in schools would help, as would greater efforts to get employers to hire, accommodate and promote autistic adults.  Most importantly, however, it is time we as a society stopped telling autistic people, young and old, that they are only worthwhile as long as they can appear normal.  Because as long as their neurology remains autistic, this is simply setting them up for exhaustion, failure, and possible suicide.

Dani Alexis, the brilliant young woman who writes the Autistic Academic blog, was punished as a child for any behavior that varied from the norm.  She quickly absorbed the fact that her needs were not important to the adults around her, and was, as a result, suicidal for a very long time.  I think I will let her have the last word on what I’ve been calling the “normalization agenda.”  This is what she says:

“I’m one of the handful of autistic people who, for a few brief moments, achieved indistinguishability from peers.  What you are seeing now is the result of thirty years of constant work toward that goal.

It was not worth it.”[21]

 

 

 

 

[1] See Lydia Brown, “The Politics of Coming Out,” on the Autistic Hoya blog:

http://www.autistichoya.com/2012/10/the-politics-of-coming-out.html.

[2] Judy Endow, “Autistic Burnout,” on the Aspects of Autism Translated blog:

http://www.judyendow.com/advocacy/autistic-burnout/.

[3]  Sparrow Rose Jones, “ABA,” from the Unstrange Mind blog:

https://unstrangemind.wordpress.com/2014/10/07/aba/.

[4] Larkin Taylor-Parker, “Passing:  How to Play Normal,” from the Think Inclusive blog:

http://www.thinkinclusive.us/passing-how-to-play-normal/.

[5] Amethyst Schaber, Response to a question form lesmis5, on the Neurowonderful blog:

http://neurowonderful.tumblr.com/post/104511295106/lesmis5-so-my-sister-just-threw-the-biggest.

[6] Jocelyn Eastman, “Looking Autistic:  The Positives and Pitfalls of Passing,” from the Art of Autism blog:

http://the-art-of-autism.com/looking-autistic-the-positives-and-pitfalls-of-passing/.

[7] Nicole Wildhood, “What Does It Mean to ‘Look Autistic’?” The Atlantic March 24, 2016:

http://www.theatlantic.com/health/archive/2016/03/what-does-it-mean-to-look-autistic/475287/.

[8] Joseph Galbraith, “Passing in the Neurotypical World,” from the A Boy with a Whole in His Head blog:

http://www.aboywithawholeinhishead.info/2016/03/passing-in-neurotypical-world.html.

[9] “The Tyranny of Indistinguishability:  Performance,” on the Radical Neurodivergence Speaking blog:

http://timetolisten.blogspot.com/2013/11/the-tyranny-of-indistinguishability.html.

[10] FIX REF  Kate, “Passing,” on The Thinking Person’s Guide to Autism blog.

[11] Michael Scott Monje, “Not That Autistic,” originally published on his blog, Shaping Clay (http://www.mmonjejr.com/2013/01/not-that-autistic.html), but updated (among other things, to add the information about his facial muscles) for publication in The Real Experts:  Readings for Parents of Autistic Children, ed. Michelle Sutton (Autonomous Press, 2015).

[12] Judy Endow, “Losing an Autism Diagnosis,” on the Aspects of Autism Translated blog:

http://www.judyendow.com/autistic-behavior/losing-an-autism-diagnosis/.

[13] “Anna,” “Off the Spectrum:  How Autistic Are You?” from the Anonymously Autistic blog:

https://anonymouslyautistic.net/2016/08/09/off-the-spectrum-how-autistic-are-you/.

[14] Kassiane Sibley, “The Tyranny of Indistinguishability:  Performance,” on the Radical Neurodivergence Speaking blog:

http://timetolisten.blogspot.com/2013/11/the-tyranny-of-indistinguishability.html.

[15] Michael Scott Monje. “In Passing:  On Not Passing, Failing to Pass, and Social Skills,” on the Shaping Clay blog:

http://www.mmonjejr.com/2012/07/in-passing-on-not-passing-failing-to.html.

[16] Michael Scott Monje, “Not That Autistic,” originally published on his blog, Shaping Clay (http://www.mmonjejr.com/2013/01/not-that-autistic.html), but updated (among other things, to add the information about his facial muscles) for publication in The Real Experts:  Readings for Parents of Autistic Children, ed. Michelle Sutton (Autonomous Press, 2015).

[17] “AinsleyHarte”  http://wrongplanet.net/forums/viewtopic.php?f=3&t=153352&sid=fd8394a8ef412b3562390350ea16c5fb&start=45

[18]  Amethyst Schaber, response to question on the Neurowonderful Tumblr site:

http://neurowonderful.tumblr.com/post/104511295106/lesmis5-so-my-sister-just-threw-the-biggest.

[19] Sparrow Rose Jones, “ABA,” from the Unstrange Mind blog:

https://unstrangemind.wordpress.com/2014/10/07/aba/.

[20] Tatja Hirvikoski, Ellenor Mittendorfer-Rutz, Marcus Boman, Henrik Larsson,

Paul Lichtenstein and Sven Bölte, “Premature Mortality in Autism Spectrum Disorder,” British Journal of Psychiatry 208: 3 (2016), 232-38.  See also the report by the British organization Autistica, “Personal Tragedies, Public Crisis,” p. 5:

https://www.autistica.org.uk/wp-content/uploads/2016/03/Personal-tragedies-public-crisis.pdf.

[21] Dani Alexis, “On Functioning and ‘Functioning’,” on the Autistic Academic blog:

https://autisticacademic.com/tag/indistinguishable-from-peers/.

 

The Normalization Agenda, Part One

Today I want to talk about one of the issues that almost immediately came to the fore as autistics began to talk to one another online in the 1990s.  It remains a major topic of interest within the autism community today.  This is what has often been labelled the “normalization agenda”—the effort to teach autistic people how to become (or more specifically—and the distinction really matters here–how to act) “normal.”

 

First:  a bit of history.   In the 19th and early 20th C., non-verbal people with autism were generally labelled “feeble-minded” and sent to institutions (or sometimes discreetly allowed to die at home).  Verbal autistics might remain in the care of their families; if they had fairly strong social skills they might even be accepted as somewhat “eccentric” members of the broader society.  They were never given the label “autistic,” however.  Only in the early 1940s, was “infantile autism” recognized as a distinct condition, by Leo Kanner at Johns Hopkins (although it now looks as though Kanner “lifted” some of his data and ideas from the Austrian psychiatrist Hans Asperger).  Kanner, who examined only a few children from relatively well-to-do families, believed that autism was a rare form of mental illness.  From the time he first wrote about it in 1943 through the 1960s, American psychologists followed his lead, trying to address the problems their autistic clients presented through psychotherapy of one kind or another.  Over the course of the 1960s, however, autism (still considered a very rare condition, because the vast majority of people with autism remained in institutions and therefore escaped the attention of psychologists) came to be seen as a developmental disorder, the expression of unusual wiring in the brain.  That view has been confirmed over recent decades, as CAT Scans and MRIs have revealed differences in structure, connectivity, and levels of neurotransmitters in the brains of autistic people.  (Although there is certainly no clear-cut line separating autistic from “normal” brains.)

 

But back to the 1960s.  The shift to from a psychogenic to a biogenic explanation for autism had several interesting corollaries.  First, there was a startlingly quick change in estimates of autistic intellectual capabilities.  The received wisdom before  the late 1960s was that people with autism had normal, or perhaps even superior intelligence.  By around 1970, however, the scientists who now understood autism as a developmental disorder also assumed that that disorder necessarily entailed what they called “mental retardation,” and indeed usually quite profound mental retardation.  It turns out that they were wrong about this, but their assumptions about mental incapacity contributed to a new understanding of autistic people as not just sick, but inherently defective.  Their mental wiring was not just different, but profoundly dysfunctional, and there was little that could be done about it.  From the late 1960s through the 1980s, most doctors counselled parents of children diagnosed with autism to send them into institutions and then try to forget about them.

 

An exception to this rule was Ivar Lovaas of UCLA, who thought that he could use Skinnerian principles to improve the behavior of autistic children.  When Lovaas died in 2010, he was lauded by other psychologists as the compassionate champion of these suffering children.  I have to say that I, as well as many autistic people, have severe doubts about this appraisal.  Even leaving aside his methods, which involved the use of extreme aversives (slapping, electric shocks, food deprivation, isolation, etc.) to extinguish what he considered problematic behaviors, his expressed attitude towards the subjects of his experiments was perfectly appalling.  This is what he said in a 1974 interview with Psychology Today:  “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but l you have to build the person.”[1]  To note this horrible attitude is not to undermine his scientific achievements—it is merely to observe that Lovaas was not really a very nice person.

 

ABA (Applied Behavior Analysis), which is rooted in Lovaas’s methods, remains the dominant and most frequently recommended intervention for autistic children to this day.  It is one of the few interventions that health insurance will (sometimes, in some states) cover.  I’m not going to address the vexed question of how well Lovaas’s method, and the treatments that developed out of his method, actually work—that’s a complicated subject, still hotly debated, and it would take too long to cover here.  What I would like to focus on is the stated GOAL of ABA, which was in Lovaas’ time, and remains today, to take an autistic individual and “build a person,” and more specifically, to “build a normal” person.

 

In a still frequently cited 1987 article, Lovaas claimed that out of a group of autistic children who had been subjected to 40 hours/week of intensive behavioral interventions beginning at age 3, 47% had become, by the end of first grade, “indistinguishable from their normal friends.”[2] That was Lovaas’s phrase: “indistinguishable from their normal friends.” Today the more common formulation is “indistinguishable from their peers.”  But from the 1980s through 2016, the key word has remained “indistinguishable.”  It still appears over and over again today, both in research reports and in advertising for companies that offer ABA treatment.  The ultimate goal of treatment in 2016, as in Lovaas’s time, is to change behavior, to make autistic people look and act like everyone else.  This is what the practicioners of ABA call the “optimal outcome”—the normalization of autistic people.

 

In fact, relatively few children ever reach this goal—Lovaa’s claim of a 47% success rate in 1987 has never been equalled since.  More commonly, it is said that about one fifth to one quarter of those who go through ABA achieve the optimal outcome.  The majority of autistic children, those who do not become “indistinguishable,” have not reached the optimal outcome.  In a sense, they have “failed” (a point to which I will return later on).

 

Sometimes complete normalization of behavior is equated with “recovery” from autism.  “Recovery” language is found in many popular books and websites, some of which offer extremely dubious methods for “healing” people with autism.  However, it also can be found in scientific papers, especially—but by no means uniquely—in papers produced by a research group at the University of Connecticut, which has focused on studying the characteristics of a small number of “recovered” autistic children, children who appear to have achieved the “optimal outcome,” to have become “indistinguishable from their peers.”  These individuals can speak more or less as other people do, and can engage in ordinary conversations.  They can be successful in mainstream classrooms.  They have “normal” or “typically developing” friends.  But have they really “recovered” from autism?  Has ABA therapy, or any other form of intervention, actually affected the underlying neurology behind the observable symptoms of autism?

 

The answer is that no one knows and surprisingly few people have even tried to find out. [3]  In fact, I have been able to locate only a single study that even attempts to trace changes in brain structure or function as a result of an early intervention (not ABA in this case, but the Early Start Denver model).  The researchers wanted to see whether autistic kids could learn to take a “normal” interest in human faces.  This study compared EEG readings of typically developing children and autistic children who had gone through the ESDM, while the kids were looking at pictures of faces and other objects.  The researchers found that when the children were looking at faces, the EEGs of both groups were very similar, although not quite identical;  the researchers used that finding to claim that “early behavioral intervention is associated with normalized patterns of brain activity.” [4]

 

Now, there are a number of methodological issues with this study.  In the first place, about half of the kids in the autistic group simply refused to cooperate with the EEG protocol, so there was no data for them at all.  Secondly, there were no baseline readings for the period before intervention—the children’s EEGs were only examined after, not before, treatment–so even in the case of those who cooperated, it is not really clear what, if any, neurological effects the intervention actually had.   Most importantly, the EEG scans only measured whether children who had been trained to look at faces showed activation in certain areas of the brain when they looked at faces.  This shows that autistic kids can be trained to notice faces, but it is pretty far from “normalized brain activity.”

 

Given the plasticity of the human brain, especially early in life, it is quite possible that interventions could change autistic neurology, moving the young autistic brain towards a more typical structure and function.  However, we simply don’t know whether the interventions currently being used have that effect.  We don’t yet have reliable studies based on brain scans.  Neither are parents and therapists in a position to give reliable data on this, because, while they can observe normalized behaviors, they don’t know what’s going on in the heads of the people whose behavior has been normalized.  They don’t know what the experience of acting “normally” feels like for those whose behavior was not originally normal.  So, I have looked on the web for information what people who were diagnosed with autism as children, but who have nevertheless learned to act “normally,” have to say about their own experiences.

 

Do any of them say they have actually “recovered” from autism?   In fact, very few do.  I have been able to find only a tiny number of first-hand accounts of “recovery” on the web.  In one video, a young man who quite recently went through the Lovaas program as still practiced at UCLA, proudly declares that he has recovered from autism.[5]  There is another video available online in which a young woman claims to have recovered from autism not because of the ABA treatment she went through at an early age, but because of the gluten- and dairy-free diet she adopted during adolescence.[6]  A third account makes no mention of therapy at all, but attributes recovery to intensive prayer.[7]  Now it may very well be that the majority of those who achieve optimal outcome are more interested in getting on with their lives than in recording their transformation.  But it is also true that what looks like “recovery” to parents, therapists, and scientists may involve no significant change in neurology at all.

 

While it is difficult to find first-hand reports written by adults who say they once were, but no longer are autistic, it is EXTREMELY easy to find first-hand accounts written by adults who say they have learned to act normally or “neurotypically,” even though their neurology has remained autistic.  These are people who identify themselves as autistic and who engage eagerly with the online autism community.  However, they report that they have learned to stop doing what comes naturally to them, and to engage instead in behaviors they find unnatural or even unpleasant.  They have learned to suppress their stereotypic or self-stimulatory behaviors (what the autistic community calls “stims”), even though they still want and need to use them.  (Usually these people “stim” in private, when no one is watching.) They have learned to look people in the eye, even though doing is painful.  They know how to “use their words,” even though words may not express what their visual imaginations want to say to the world.  They have memorized a large number of scripts that they are able to use in casual conversation.  In other words, even though they remain autistic, they have learned to “pass” as normal.

 

 

 

[1] Paul Chance interview with Lovaas:

http://neurodiversity.com/library_chance_1974.html.

[2] O.I. Lovaas, “Behavioral treatment and normal educational and intellectual functioning in young autistic children,”Journal of Consulting and Clinical Psychology, 55 (1987), 3-9.

[3] A call for more studies that look at neurological outcomes:  Poustka, L.,  Brandeis, D., Hohmann, S., et al., “Neurobiologically based interventions for Autism Spectrum Disorders:  Rationale and New Directions,” Restorative Neurology and Neuroscience 32 (2014), 197-212.

[4] Geraldine Dawson, Emily Jones, et al., “Early Behavioral Intervention Is Associated With Normalized Brain Activity in Young Children With Autism,” Journal  of the American Academy of Child and Adolescent Psychiatry 51: 11 (2012), 1150-59.

[5] “Recovery from Autism: The Joe Mohs Story,” on Youtube:

https://www.youtube.com/watch?v=sIlny3iUt8A.

[6] http://vickeg0117.blogspot.com/2016/06/how-i-recovered-from-autism.html.

[7] http://www.wittyprofiles.com/q/4696258.

“the principal emotion experienced by autistic people is fear”

 

Autistics live with fear, in a way that most neurotypical people (including myself) find difficult to imagine.  Anxiety impairs quality of life in up to 84% of all autistic individuals.  Roughly 40% suffer from some form of clinically significant anxiety disorder–as compared to 18% of the overall population of the United States.[1]  As Sparrow Rose Jones puts it:  “I have anxiety so bad and have had it for so long that I didn’t even realize how anxious my baseline state is until the first time I smoked marijuana and experienced what it’s like to feel peaceful. My anxiety makes every day a struggle. Even my good days are riddled with anxiety.”[2]  Famous autistics like John Elder Robison and Temple Grandin–people who have written multiple books and appeared often in public– are by no means immune to this problem.  Although he hides it well, Robison confesses that “the fear and anxiety is always with me.”[3]  Grandin goes further.  She believes that “the principal emotion experienced by autistic people is fear.”[4]

 

Many of the behaviors that perplex neurotypicals arise out of fear.  Many–perhaps most–meltdowns, self-harm, aggression against others, eloping, and obsessive stimming can be attributed to a kind of existential terror, a feeling that the one’s very self is dissolving into a world of chaos and unpredictability.  Tito Mukhopadhyay’s memories of his early childhood include this kind of terror.  As a very young child, he became entranced by his shadow, which he understood as part of himself.  But at night, when his shadow disappeared, he would panic:  “I remember my voice screaming when I could not see my shadow anywhere around me.  I wondered whether it had left me here all alone.  I was afraid that I would lose my existence because my shadow had left.”[5]

 

To many autistics, the world is a wildly unpredictable, and therefore deeply frightening place.  Difficulties in reading and responding appropriately to cues from other people make it next to impossible to predict what will happen in social situations.[6]  For those readers who are neurotypical:  imagine how scary it would be if all the people we met wore masks that hid their facial expressions and voice filters that deadened variations in tone.  All the familiar clues that tell us whether the person we are dealing with is friendly or hostile, all the clues that tell us whether the words being spoken to us are meant literally, ironically, or sarcastically would be gone.  We could never be quite sure whether we were being accepted or rejected, praised or ridiculed, told the truth or being lied to.  This is the condition in which autistics must live every day.

 

But social anxiety, while extremely common, is only the tip of the iceberg.  Lack of predictability permeates every aspect of the autistic condition, including even experiences of the physical world and one’s own body.  Sensory issues are as much a source of fear as social interactions.[7]  A person with acute tactile sensitivities constantly worries about coming into contact with something painful;  another with sensitivity to sound may be so terrified by a sudden loud noise that she screams out loud.  A thirsty child may find himself suddenly unable to drink a favorite soda, without understanding that this time the soda was simply too cold for him to tolerate.  A meltdown follows, not only because the child’s desire for a drink has not been not satisfied, but, more importantly, because what had previously been a predictable source of comfort has now inexplicably disappeared.

 

Proprioception is awareness of the body’s location in space, in relationship to other objects.  Many autistics have relatively weak proprioception–they must live with constant worries about bumping into things or falling because they have misjudged distances.  Worse, they may sometimes not be able to feel their bodies at all—they experience an eerie sense of floating, of being ungrounded, that quickly becomes intolerable.  “It’s something I struggle with,” M. Kelter reports.  “My limbs, especially my arms, feel sort of disconnected, strange. It’s like they’re floating next to me, not really attached.”[8] These individuals may frantically seek deep pressure or jump up and down or purposely bang into walls, simply as a means of locating their own bodies.

 

Interoception, on the other hand, is awareness of the body’s internal processes and states–the ability to feel one’s own breathing, tell whether one is cold enough to need a coat, identify a physical sensation as hunger or pain.  “Many autistic people have dampened or muted interoception. We just don’t seem to notice what’s going on in our bodies until it reaches a level that other people would find intolerable. And often when we do notice it, it goes from ‘oh that’s happening’ to intolerable really darn fast,” notes Cynthia Kim.[9]  Poor awareness of bodily states can have dangerous consequences in the real world:  the person with hypointeroception (lack of ability to detect physical states) may forget to eat or sleep or obtain needed medical care.  It is not surprising, then, that mysterious bodily sensations—or the lack of any bodily sensation at all–may cause anxiety. But interoception is also closely tied to self-awareness and emotion.  The inability to sense how one’s own body feels right now or to predict how it will react in the future creates a fearful sense of one’s very self as insubstantial and fragile, easily disrupted or destroyed.  More on this in the next post.

 

 

[1]  See also Francisca van Steesel, Susan Bögels and Sean Perrin, “Anxiety Disorders in Children and Adolescents with Autism Spectrum Disorders:  A Meta-Analysis,” Clinical Child and Family Psychology Review 14: 3 (2011), 302-17.

[2] Rose Sparrow Jones, “Anxiety and Mental Health Accessibility,” from the Unstrange Mind blog, :  https://unstrangemind.wordpress.com/2016/05/05/anxiety-and-mental-health-accessibility/.

[3] by John Elder Robison, “Autism and Fear,” Psychology Today 2/8/2011:  https://www.psychologytoday.com/blog/my-life-aspergers/201102/autism-and-fear.

[4] Cited by Robison (see note 3) and by Liz Becker, “Fear and Autism,” on the Autism Support Network blog:  http://www.autismsupportnetwork.com/news/fear-and-autism-2478922.

[5] Tito Mukhopadhyay, How Can I Talk If My Lips Don’t Move?  Inside My Autistic Mind (New York, 2008),

[6] An eloquent expression of this anxiety can be found in the poem “Terrified of People,” by autistic teenager Iain Kohn:

https://themighty.com/2016/01/why-i-am-terrified-of-people-as-an-autistic-teen/

 

[7] Judy Endow, “Fear, Anxiety, and Autistic ‘Behavior’,“ on the Aspects of Autism Translated blog:  http://www.judyendow.com/advocacy/fear-anxiety-and-autistic-behavior/.  Endow notes:  “Because we do not have a way to predict if, when or how our bodies will serve us (or not!) it is quite common for autistic people to have some level of ongoing fear and/or anxiety.”

[8] M. Kelter, “The indefinite, luminous curve,” on the Invisible Strings blog:  http://theinvisiblestrings.com/the-indefinite-luminous-curve/#more-1225.

[9]   Cynthia Kim, “Interoception:  How Do I Feel?” on the Musings of an Aspie blog:  https://musingsofanaspie.com/2013/07/03/interoception-how-do-i-feel/

Addiction–or Necessity?

There appears to be a serpent in the paradise of stimming.  The activity can be so delightful that it becomes addictive—distracting autistic people not only from what other people want done (schoolwork, hygiene, ABA therapy), but even from they themselves want and need (food, sleep, communication, a meaningful life).  Many autism “experts” and parents worry about the potentially addictive nature of stimming, but most autistic people who write for an online audience unabashedly celebrate their stims, viewing them as wholly positive.  Many of them believe stimming actually helps them function better in the world, by allowing them to concentrate on what they need to do.  For these people, the stim is an effective tool, as well as a source of joy.[1]

There are, however, a few autistics who do view stimming as potentially problematic.  Ido Kedar, for example, writes:

It may start small but it can take over your life- not so much life, but all you do is less important than the stim itself if it is compelling. So, it is an escapist drug and it is addictive. I used to stim a lot as a young boy, especially before I could communicate. Now I stim less because I am engaged in life at a normal level, so I stay in the world as much as I can. I am thrilled about that because I don’t want to live in Autismland flapping, tensing, and twirling my life away.[2]

But to describe stimming as “addictive” certainly does not justify attempts to separate autistic individuals from their stims–especially if the goal is simply to make them “look normal.”  If the stim is a source of pleasure, it should obviously be tolerated at least some of the time.  Why should autistic people not be allowed to experience their own pleasures?  And if a stim actually helps the stimmer achieve his or her goals (in other words, if it helps them focus better)–as many autistics claim–it should obviously be tolerated all of the time.

Intervention may be warranted if stimming seriously detracts from quality of life, or if it is self-injurious.  However, even here, great caution is warranted.  Stimming often serves as an essential coping mechanism (a response to physical or mental distress).  Determining whether this is the case is no simple task, not only because the source of distress may not be obvious to neurotypicals, but also because autistic people (especially children) often have trouble identifying the source of their troubles, let alone communicating them to others.   An autistic child may not realize that the unending buzz of the fluorescent lights in her classroom is setting her nerves on edge, and so she cannot ask her teacher to turn them off.  She may not be aware that she dreads the bullying coming up during recess time, and is stimming to relieve anxiety.  But if it can be determined that physical or mental distress is the cause of the stim, then the next step should be to see whether that distress can be alleviated in some way.  ONLY if the cause of distress can be eliminated or greatly reduced should other activities such as schoolwork, hygiene or therapy be gently promoted.  And it may well be the case even then, that stimming will help the autistic individual focus better on what needs to be done.

But what if the stim is self-injurious—that is, what if the autistic person is desperately trying to smother pain they cannot control with a different kind of pain (head-banging, arm-biting, etc.) that they can control?  Extreme stims often (perhaps always) are a response to extreme distress that cannot be expressed in other ways.  A non-verbal teenager may not be able to tell his doctor that impacted wisdom teeth are causing him constant suffering, and that he is banging his head against the wall in an attempt to distract himself.  In that case, the only humane solution is to try gently to replace the harmful stim with a less destructive one—for example, head-banging and biting can often be replaced by deep pressure.[3]  Under no circumstances, however, should aversives—bitter tastes, sudden loud noises, disgusting smells,  or the application of new pain, such as electric shocks (and yes, these aversives are all still in use today, even though there is no scientific justification for them)—be used to eliminate self-injury.  There are few things crueler than punishing a child (or adult, for that matter) for stimming, if the stim is all that stands between them and despair.

 

 

 

 

[1] Cynthia Kim, “A Cognitive Defense of Stimming,” from her Musings of an Apsie blog: https://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/

[2] “The Lure of Stims,” from Ido Kedar’s Ido in Autismland blog:  http://idoinautismland.com/?p=117

[3] Some useful tips may be found on http://fuckyeahstimming.tumblr.com/tagged/Replacement-Stim-Requests-and-Suggestions

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/)

 

Faces

Beginning in the late 1960s, psychologist Paul Ekman began arguing that certain facial expressions were universal.  He and his colleagues developed cross-cultural experiments that showed how people in very different societies both used their own faces and “read” other people’s faces in the same way.  No matter what their background, people expressed six basic emotions (happiness, sadness, disgust, fear, surprise, and anger) using the same facial muscles; when they saw those muscles come into play on someone else’s face, they were generally able to interpret correctly the emotion the other person was feeling.[1]   Ekman and his colleagues developed and refined FACS, a system for systematically coding the movements of facial muscles, and then EMFACS, a system for interpreting spontaneous displays of emotion, using the movement of facial muscles.[2]  Both systems have been widely used in psychological research, as well as in other contexts. Other coding systems have been developed by other researchers, based on their own theories of emotion and its physical expression.[3]  One of these other systems was used at Cambridge University in the development of Mindreading™, a computer program intended to help children with autism learn to read neurotypical faces in the same way neurotypicals do.  Mindreading™ is the gold standard for this effort, but many other computer programs and phone apps have similar goals.[4]

There is a market for such products because one of the hallmarks of autism is difficulty in interpreting neurotypical people’s emotions.  While Ekman claimed that the ability to read the six basic emotions was universal, most autistic people cannot instinctively do this.  However, many autistic adults have learned– through study and practice–to interpret facial expressions quite well.  In fact, a fascinating series of mystery novels by British author Estelle Ryan is based on this learned ability.  Her autistic protagonist, Genevieve Lenard, has studied psychology (and presumably something like the EMFACS system) and has become so adept at reading the fine details of facial movement and body language that she is employed by an art insurance company to detect people lying in videotaped conversations.  Lenard is the fictional exception, however.  While many autistics can learn to detect the basic emotions in people’s faces, more complex emotions, such as embarrassment, generally elude them.[5]

Autistic struggles with facial recognition have attracted a great deal of attention from psychologists, neurologists and other researchers.  A huge body of scientific literature exists on this phenomenon and its neurological causes.  However, a closely related problem has received no scientific attention at all, despite its inherent interest.  And because this problem has not been studied, we do not know whether the failure of neurotypicals to read autistic faces is because autistic people express emotion using different facial muscles (in which case, Ekman’s claims for “universality” fall apart), or because neurotypicals have a deficit of some sort in the ability to read faces different from their own.

“Flat affect” (or the less severe “blunted” and “restricted affect”) is common among autistic people.  Their faces simply move less than those of neurotypicals; they may talk with stiff lips, without using other parts of the face—in other words, without facial expressions recognizable to neurotypicals.  The latter, however, have a genetic predisposition to expect particular facial expressions during certain kinds of social interactions.   This is true across cultures, at least for the basic emotions. [6]  Someone who does not produce the “right” expression at the right time, or whose face simply remains immobile, is experienced by neurotypicals as somehow “off”—as “weird” or downright “creepy.”  Consider, for example, this interaction between autistic blogger Cynthia Kim and a little boy visiting her house.  The two played together enjoyably in the morning, and the boy wanted to sit next to her at lunch.  But after lunch he told Kim: “you scare me.”  Kim pondered the child’s reaction for several months, and finally concluded that it was the lack of expression on her face that he had found so frightening:  “The technical term for this is flat affect, which means that a person displays reduced emotional expressiveness. It takes a five-year-old to put it in plain English though: you scare me.”[7]

Neurotypicals often see autistic people’s relative facial immobility as reflective of either a sinister masking of emotion, or more commonly as an “unnatural” lack of emotion.  The assumption that autistics don’t feel emotions (or even pain) remains, sadly, commonplace in today’s American society.  Interestingly, this assumption seems particularly common and unquestioned among younger neurotypicals.  A student Prezi presentation on Asperger’s syndrome from April 2016 states unequivocally that “Someone with Asperger’s feels no emotion and does not really care about a lot of anything.”[8]  “Imagine a world where you feel no emotion,” writes another student reviewing Mark Haddon’s The Curious Incident of the Dog in the Nighttime, a novel written from the perspective of an autistic teen (whose emotions are actually described in the novel!).[9]  But the stereotype of autistics as emotionless is also promoted by many adults—including some who really should know better.  Guillermo Sapiro is an engineering professor at Duke University, who recently worked with a professor of Child Psychology to develop a phone app designed to detect warning signs of autism in young children.  In talking to reporters about the app, Sapiro stated that, “Lack of emotion and social sharing are possible characteristics of childhood autism.”[10]  Presumably Sapiro had learned something about autism from his colleague in psychology, and he may have intended to say “lack of emotional expression.”  Nevertheless, his claim that autistic children “lack” emotion was widely repeated in the press, and it feeds the broader cultural stereotype of the emotionless autistic.

Not all autistics display “flat affect,” however.  Some of them “make faces”—that is, they produce facial expressions commonly considered inappropriate (except when produced by young children, playing with other children).  Autistic adults, as well as children, may purse their lips, scrunch up their noses, frown deeply, stick out their tongues, etc., often while making non-verbal noises of one kind or another.  Sometimes, they are doing this on purpose, to express anger or disgust, or (in the case of children) just to be annoying.  In other cases, however, such facial movements may be unplanned and even unnoticed by the person making them.  One little boy got into trouble for “making faces” at his “respite person.”  When his mother asked him why he was doing that, he replied, “Mommy, sometimes I just make faces for no reason. I didn’t know I was making faces at Miss X. I was just making them. Sometimes it just happens and I don’t know why it’s happening. I don’t make them for any reason.”[11]  “Inappropriate” faces are not necessarily intentional or expressive of any particular emotion.  Nevertheless, they often offend others, such as the respite person in this story.

Concerned about this possibility, neurotypical parents often try to make their autistic children at least aware of what they’re doing.  The mother just mentioned tried to explain gently to her son why people might “think he is trying to tell them something with just his face,” even though he didn’t mean to.  She would stop him whenever he moved his face in ways she considered potentially problematic, and ask him whether he was trying to tell her something with his face.  Self-awareness of “making faces” seems like a useful skill for a parent to teach his or her child.  Many other neurotypical parents, however, are more interested in policing their autistic children’s faces, striving to make them appear “normal.”  An online support group for parents of autistic children discussed how to train the kids (with cookies) not to produce the “ugly” faces, but only the ones the parents considered “cute,” or “appropriate.”[12]  Some scientists also want to “normalize” autistic faces:  a professor at Virginia Tech, for example, has developed a computer to teach children with autism not only how to recognize other people’s facial expressions, but also to “reciprocate” them.[13]  I will have more to say about the “normalization agenda” in a future post.

For the moment, however, I would simply note that neurotypicals appear to have just as much trouble reading autistic faces, as autistics do reading neurotypical faces.[14]  They may interpret the expressions on autistic faces incorrectly, as evidence of anger, lack of interest, disgust, mischievous intent, or even insanity.  And they may interpret “restricted,” “blunted” or “flat affect” as evidence that the autistic person feels no emotion at all.  Very little research has been done on this phenomenon, even though it is not only inherently interesting, but also has powerful practical implications for the well-being of autistics living in society.

 

 

[1] Paul Ekman, “Universals and Cultural Differences in Facial Expressions of Emotion,” Nebraska Symposium on Motivation, 19 (1971), pp. 207-82; Paul Ekman, Wallace Friesen, et al., “Universals and Cultural Differences in the Judgments of Facial Expressions of Emotion,” Journal of Personality and Social Psychology 53 (1987), 712-17.

[2] Paul Ekman and Erika Rosenberg, What the Face Reveals:  Basic and Applied Studies of Spontaneous Expression Using the Facial Action Coding System (FACS), 2nd ed. (Oxford, 2005), describes the development and use of these systems.

[3] Karsten Wolf, “Measuring Facial Expression of Emotion,” Dialogues in Clinical Neuroscience 17 (2015), 457-62.

[4] The program is distributed by Jessica Kingsley, a publisher who specializes in works on autism:  http://www.jkp.com/mindreading.

[5] Ofer Golan, Jacqueline Hill and Simon Baron-Cohen, “The Cambridge Mindreading (CAM) Face-Voice Battery: Testing Complex Emotion Recognition in Adults with and without Asperger Syndrome,” Journal of Autism and Developmental Disorders 36 (2006), 169-83; see also Ofer Golan,Yana Sinai-Gavrilov, and Simon Baron Cohen, “The Cambridge Mindreading Face-Voice Battery for Children (CAM-C): complex emotion recognition in children with and without autism spectrum conditions,” Molecular Autism 6 (2015), 22.

[6] Karen Schmitt and Jeffrey Cohn, “Human Facial Expressions as Adaptations:  Evolutionary Questions in Facial Expression Research,” American Journal of Physical Anthropology 44 (2001), Supplement:  Yearbook of Physical Anthropology, 3-24—see especially pg. 15 on the social difficulties of those who display flat affect.

[7] “You Scare Me,” on the Musings of an Aspie blog:

https://musingsofanaspie.com/?s=you+scare+me

[8] https://prezi.com/7nmzsborbhrl/aspergers-syndrome/

[9] http://www.notrequiredreading.com/books/curiousincident.php

[10] https://ssri.duke.edu/news/now-app-could-help-diagnose-autism-children

[11] http://www.modernmom.com/ee91278c-3b3d-11e3-be8a-bc764e04a41e.html

[12] http://www.mdjunction.com/forums/autism-discussions/general-support/1596632-does-any-ones-child-make-faces

[13] https://www.ece.vt.edu/news/ar16/making-faces.php

[14] Rebecca Brewer, Federica Biotti, et al., (“Can Neurotypical Individuals Read Autistic Facial Expressions?  Atypical Production of Emotional Facial Expression in Autism Spectrum Disorders,” accepted for publication in Autism Research ) have shown that autistic individuals produce such idiosyncratic facial expressions that neither neurotypicals nor other people with autism can read them reliably.

 

 

Autistic Intelligence, Part 3

In 1996, a group of notable American scientists asserted that “most, if not all” people with autism also suffered from some degree of what they were then calling “mental retardation.”[1]  Nine years later, in 2005, a Canadian researcher reviewed the existing literature on autism and intelligence and concluded that 55-70% of those with autism had an intellectual disability.[2]  Another nine years later, in 2014, the U.S. Centers for Disease Control reported that 31% of autistic children studied in their most recent survey had an intellectual disability.[3]  How can we explain these rapidly changing numbers?  Why has the proportion of autistic people considered intellectually disabled dropped from “most, if not all” to less than one-third over the course of the last twenty years?

One significant factor is change in the population being studied.  Recent research generally includes not only those with what might be called “classic autism” (who tend to do poorly on standard intelligence tests), but also people with Asperger Syndrome.  Because Aspergians, by definition, have been assessed on standardized tests as having average or above-average intelligence, including them in research populations automatically raises the average IQ found.  But an equally important part of the explanation has to do with the methods by which autistic intelligence is studied.  From the 1960s to the 1990s, scientists regularly used intelligence tests (Stanford-Binet, Wechsler, etc.) designed for neurotypicals in their autism research, without questioning whether those tests were really appropriate for the population being studied. Around the turn of the millenium, however, scientists began to raise serious questions about these tests and the validity of their results.

One very basic issue is the use of language-based tests in studying a population that famously “thinks in pictures.”[4]  A 2007 study conducted by a team of scientists based in Montreal—a team led by Michelle Dawson, who is herself autistic—elegantly demonstrated the unreliability of conventional tests in assessing the intelligence of those who think in non-conventional ways.  The Montreal researchers looked at what happened when autistic children and adults, along with a group of neurotypical controls, took two different intelligence tests.  The first was the very widely used Wechsler test, which includes both verbal and non-verbal sections.  The second test was Raven’s Progressive Matrices (RPM), which is entirely non-verbal (it requires the completion of visual patterns) and which is generally considered to assess high-level analytical skills.  What they found was striking: as expected, the autistics did worse than the neurotypical controls on the Wechsler test—especially on the verbal sections.  However, on the RPM test, autistic scores rose dramatically (in some cases by as much as 70 percentile points) into what would be considered the “normal” range for a neurotypical population, while the neurotypical scores remained basically unchanged. [5]  The Montreal team concluded that because of the use of inappropriate tests, autistic intelligence has generally been greatly underestimated.  This point is confirmed by the personal experiences of many autistics.  A contributor to the Wrong Planet website, for example, writes:  “When I was 8 years old, my standard IQ scored in the moderately mental retardation range, but I scored 135 on a nonverbal IQ test at that same time.”[6]

A further problem, well-known to most people with autism, is that their ability to concentrate and communicate may vary drastically from day to day, for a wide variety of reasons, including how much sleep they’ve had, how much sensory overload they are facing, how much powerful emotion they are processing, how tiring they find the test itself, etc., etc.  An intelligence test given on any single day is, thus, much more a snapshot of their functioning on that particular day, than a reliable indicator of their overall intelligence.  Testing results may vary wildly depending on when they are given.  A middle-aged man who uses the moniker “Horus” online notes that “My own IQ scores have changed dramatically and I’ve taken seven professionally administered tests in my life. I scored 120 on the first one I took in 9th grade. I only scored 94 on the next one I took at 23. On the five tests I’ve taken since….I’ve scored as high as 143 and as low as 104.”[7]  If autistic intelligence is to be tested at all, it must clearly be done through a series of tests, given over the course of different days.

And a final fundamental problem has to do with the “global” scores derived from intelligence tests—the single number that most of us think of as someone’s “I.Q.”  For decades, an I.Q. of 100 has been defined as “average,” while one below 70 indicates intellectual disability, and one above 160 signifies “genius.”  But where do these single numbers come from?  They are calculated, using a variety of formulas (depending on the test being used) from the sub-scores on the different parts of the test, so that the global score is what might be considered an “average” of all the sub-scores.  Specialists in testing regularly warn us that global scores are not terribly significant in and of themselves.  It is more important to look at the sub-scores, to see each individual’s areas of intellectual strength and weakness.  Nevertheless, global scores continue to be widely used in research, to make claims about the intelligence of different groups in society (including autistics), as well as in everyday practice, to make decisions about what classes to place children in or what special services to offer them.

Calculation of a global IQ score is, however, based on the assumption that an “average” actually has some meaning—in other words, that the sub-scores on the different parts of the intelligence test will be roughly comparable with one another.  For most neurotypicals, there tends to be overall consistency across the sub-scores.  Some will be a bit higher, some will be a bit lower, but they mostly fall within the same general range, and so the global score can give us some indication of what that range is.  People with autism, however, tend to end up with very different scores on different parts of intelligence tests. It has been repeatedly shown that autistics perform much better on the non-verbal than on the verbal sections of intelligence tests, but it is also the case that they score much better on some of the subtests within these two large categories than on others.  In other words, if you look at an autistic person’s scores across all the different sub-sections of an intelligence test, you will very often see a spikey pattern of highs and lows, with some of the highs being very much higher than the lowest low.  (It is not unusual for someone with autism to achieve a “genius” level score on one part of a test, and a “sub-normal” score on another.)  But how should such varied results be factored into the determination of a global IQ score?   How useful is an average, when the numbers being averaged are so dissimilar?  Based on these discrepancies in sub-scores, a recent article in the Journal of Autism and Developmental Disorders has declared global IQ scores for autistics essentially meaningless.[8]

What has emerged, then, over the course of the last two decades, is a scientific consensus that people with autism are much more intelligent than used to be thought.  While far too many service providers, school administrators, teachers, therapists and other professionals still assume that a person with autism must be intellectually disabled, not only dry scientific data, but a growing number of compelling anecdotes illustrate the inaccuracy of that assumption.  It has also become clear that we still don’t know how to measure autistic intelligence accurately.  And until that problem is resolved—if it ever can be—we would do better to give autistic people the benefit of the doubt, or “presume competence,” than to deny them a proper education, jobs, or the opportunity to live independently, on the assumption that they are just not “smart enough.”

[1]  Marie Bristol, Donald Cohen, E. Jane Costello, et al., “State of the Science in Autism:  Report to the National Institutes of Health,” Journal of Autism and Developmental Disorders 26: 2 (April, 1996), p. 124.

[2] Eric Fombonne E (2005) “Epidemiology of autistic disorder and other pervasive developmental disorders,” Journal of Clinical Psychiatry 66 (2005):  3-8.

[3]  Jon Baio, “Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years,” Centers for Disease Control and Prevention, Surveillance Summaries, March 28, 2014: http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm?s_cid=ss6302a1_w

[4] Temple Grandin, Thinking in Pictures, and Other Reports from My Life with Autism (New York, 1995).

[5] Michelle Dawson, Isabelle Soulieres, Morton Ann Gernsbacher and Laurent Mottron, “The Level and Nature of Autistic Intelligence,” Psychological Science 18 (2007), 657-62.  See also Isabelle Soulieres, Michelle Dawson, Morton Ann Gernsbacher and Laurent Mottron, “The Level and Nature of Autistic Intelligence II: What About Asperger Syndrome?” PLOS/One September 28, 2011:  http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0025372; Valerie Courchesne, Andree-Anne Meilleur, Marie-Pier Poulin-Lord, Michelle Dawson, and Isabelle Soulieres, “Autistic Children at Risk of Being Underestimated:  School Based Pilot Study of a Strength-Informed Assessment,” Molecular Autism 6 (2015): https://molecularautism.biomedcentral.com/articles/10.1186/s13229-015-0006-3.  Dawson et al’s 2007 study is discussed Temple Grandin and Richard Panek, The Autistic Brain:  Helping Different Kinds of Mind Succeed (New York, 2013).

[6] Post dated September 13, 2010.  Discussion topic “Your IQ as a Child vs. Your IQ as an Adult”:  http://wrongplanet.net/forums/viewtopic.php?t=137652

[7] Post dated September 13, 2010.  Discussion topic “Your IQ as a Child vs. Your IQ as an Adult”:  http://wrongplanet.net/forums/viewtopic.php?t=137652

[8] Kerri Nowell; G. Schanding; Stephen Kanne; Robin Goin-Kochel, “Cognitive Profiles in Yourth with Autism Spectrum Disorder:  An Investigation of Base Rate Discrepancies using the Differential Ability Scales—Second Edition,”Journal of Autism and Developmental Disorders, 45 (2015), 1978-1988.

Autistic Intelligence, Part 2

 

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

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

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

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

 

Autistic Intelligence, Part 1

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

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

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

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

 

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

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 . . .).

 

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.

 

 

College

In The Politics of Autism, I discuss the growing number of college students on the spectrum.At The Journal of Autism and Developmental Disorders, Rebecca Elias and Susan W. White have an article titled “Autism Goes to College: Understanding the Needs of a Student Population on the Rise.” The abstract:Understanding the needs of adolescents and emerging adults with Autism Spectrum Disorder (ASD)…

via Autism Goes to College — Autism Policy and Politics

How About Some Actually USEFUL Research?

Mu with iPad AAC ©Kerima ÇevikIt begins every February. Just after Valentine’s Day, the build up of hype to Autism Month kicks off with the media blasting “breakthroughs” “new research” “new hope” for autism. We grit our teeth and manage to get through it, but the latest “breakthrough” got on my husband’s last nerve. He…

via Autism Research Battle Fatigue — autism wars

Let’s Get That Website Back

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.If you go to http://www.idea.ed.gov, it redirects tohttps://www2.ed.gov/about/offices/list/osers/osep/osep-idea.html with this note: “The servers hosting our idea.ed.gov website are experiencing technical issues. As we work to resolve this issue, information regarding the Individuals with Disabilities Education Act can be found below.”One workaround is to go…

via IDEA Website Troubles — Autism Policy and Politics