Tag Archives: Human Rights

Back Again

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

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

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

Advertisements

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 . . .).