Category Archives: Autistic Intelligence

Revised: Educating Autistic Children, 1950-1975

Autism, Autistic Intelligence, Bullying, Education, Psychiatric hospitalization, , ,

As I mentioned a few weeks back, I’m pulling material out of my overly long book in order to make it shorter. And then I’m posting that material here. This is an extended version of a post I made in February 2017, but with extra material I added for the book. Hope you find it interesting.

The vast majority of adults recognized as autistic today did not have that label when they were children.  Certainly, most adults with what we today call “level 1 autism”[1] would never have been considered autistic in childhood, first because they did not meet the very strict diagnostic criteria laid out by Leo Kanner in the 1940s, and also because so few people had even heard of autism. They might only have been considered “weird” or “eccentric.”  An exception was Temple Grandin, famous today for her work in animal science and her advocacy on behalf of people with autism.  As a child, she was diagnosed as “brain-damaged”—only much later was she recognized as autistic.[2] 

On the other hand, most adults today described as “level 3” autistics[3] were incorrectly diagnosed in their childhoods.  They were almost always labelled “psychotic” or “intellectually disabled” or both.[4]  Before the 1990s, 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 strict criteria, were ever actually labelled “autistic.”  As a result, we will need to distinguish between the ways in which these three groups were educated in the past—those who were “eccentric” but “normal,” those who were considered intellectually disabled/mentally ill, and the tiny number actually diagnosed as “autistic.” 

Before 1975, when the Education for All Handicapped Children Act was passed, most “eccentrics” attended the same schools as their siblings.  They usually did so without any support services unless they had additional disabilities, or some thoughtful teacher came to their assistance.  A few of them flourished.  Others report a painful struggle at school, being punished for behaviors that were beyond their control and wrestling with learning problems that neither they nor their teachers understood.  Dawn Prince-Hughes (who later earned a Ph.D. in Anthropology) recalls the horrible year in third grade when she both developed severe asthma and encountered a particularly nasty 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.  She also announced Prince’s failing math grades, plus the fact that she was being tested for “mental retardation,” to the entire third-grade class.[5] 

These undiagnosed children almost always endured horrendous bullying from both teachers and classmates.[6]   Insults, real and threatened beatings, tripping, pushing, being shut in lockers, suffering “swirlies” in the toilet and other forms of humiliation were commonplace.[7]  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.[8] 

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.[9]  A few of these kids became bullies themselves. [10]  Still others, like John Elder Robison, finding it too difficult to cope with the stresses of school, either dropped or failed out.[11] 

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.  Most public school systems refused to allow them in their classrooms.[12]   A few parents managed to get a diagnosed child into a school, but the experiment seldom lasted more than a few months before the child was either withdrawn or expelled.[13]  No services existed to help such a child survive, let alone thrive, in the public school environment.  A few well-informed or well-connected families managed place their children in one of a handful of establishments designed specifically for the “severely damaged” or “profoundly disabled.”[14]  These establishments tended to focus on teaching functional living skills (toileting, dressing, speaking).  But sometimes they offered the basics of reading, writing and arithmetic to children who were considered able to manage those subjects.[15]  Judgments about ability were seldom correct, however.  Charles Martel Hale, Jr., for example, who was non-speaking and labelled “severely to profoundly mentally retarded,” attended a supposedly high-quality program in Queens, New York in the early to mid-1970s.  He learned living skills, but not academics.  But when he finally learned to communicate on the typewriter and computer in the 1990s, he explained that he had taught himself to add, subtract and multiply by listening to conversations and television programs.[16]

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.[17]  Tom McKean, who had attended 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 removed to a psychiatric institution.[18]  Some 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.  There, autistic residents lived in ignorance and squalor, exposed to hunger, cold, and disease, and subject to abuse by older children and adult residents and staff.  Jerry Alter entered the first of a series of psychiatric institutions at the tender age of five.  When they visited, his parents found him with bruises and black eyes, and so heavily medicated that he spent most of his time sleeping; later his sister expressed gratitude that he “only” acquired tuberculosis, and not—like so many other residents—a venereal disease at the state hospital where he was living.[19]  This was the kind of brutal environment in which most obviously autistic children found themselves before 1975.

  • – – – – – – – – – – –

[1] Still commonly called “high functioning” autism, even though functioning labels have little real meaning, as we shall see below.

[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 NOTE: I have no idea why this note came out with different formatting, but I don’t seem to be able to change it. Oh well . . .

[3] Commonly called “low functioning,” although, again, these labels are largely meaningless. 

[4] Autism, as defined by Kanner, was considered a form of childhood schizophrenia until the 1970s.

[5] Dawn Prince-Hughes, Songs of the Gorilla Nation:  My Journey through Autism (New York:  Random House, 2004), pp. 41-44.   Given the popular association of autism with special math skills, it is worth noting how many autistic adults, undiagnosed as children, remember struggling with the subject in their childhood.  Liane Holliday Willey 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.  Stephen 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, before going on to earn a Ph.D. in Special Education: Beyond the Wall:  Personal Experiences with Autism and Asperger Syndrome (Shawnee Mission, KS:  Autism Asperger Publishing Co., 2002;  2nd ed. 2003), p. 53

[6] 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/ .

[7] There will be more on this topic below.

[8] 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.

[9] 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.

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

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

[12] 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. 

[13] 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.”

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

[15] 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.

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

[17] 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.

[18] 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.

[19] Wendlyn Alter, “You’ve Come a Long Way Baby:  An Interview with Jerry Alter,” Chalice (April-May, 2014), pp. 11-15.

The Challenges Facing Autistic Children in America’s Schools

Autistic Intelligence, Education, Intelligence Testing, Non-Speaking, , , , ,

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

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

 

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

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

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

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

 

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

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

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

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

The Education of Autistic Children, 1975-1990

Autistic Intelligence, Education, Learning Disabilities, Myths about Autism, , , , ,

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.

Autistic Intelligence, Part 3

Autistic Intelligence, Intelligence Testing, , ,

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.