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.

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[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;  2^nd 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;  2^nd 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; 2^nd 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.