Autism Mythology 2

by Kristina Chew, PhD on February 15th, 2007

There is better awareness about autism, but that does not mean that myths—misunderstanding, misperceptions, stereotypes—about autism do not continue to abound.

Just this past Tuesday afternoon, my friend and fellow autism mother blogger Mom-NOS was aghast (and that is a mild word) to hear a man who works at a snack shop in a hospital (Mom-NOS was there to take her son Bud to a doctor’s appointment) “snidely,” “callously” and loudly proclaim:

“I’m not autistic - I don’t measure time by the length of songs. I use an actual clock…” and then he took off into a lengthy discourse clearly designed to insult his colleague’s intelligence - something about the length of Stairway to Heaven versus other songs and how ridiculous the idea of being “gone for one song” was.

Frankly, I’m not sure what he said after that, because even though his words continued to boom throughout the shop, I was still back at “I’m not autistic” - the insult he hurled in front of my seven-year-old son. My autistic seven-year-old son. My son didn’t react - which doesn’t mean that he wasn’t effected - and so, though I wanted to confront the man on the spot, I decided not to call my son’s attention to his words.

But I’ve spent the past day with a knot in my stomach because this man callously tossed my son’s disability out as an insult. I’ve spent the past day worrying about what kind of cruelty might be in store for my son in the future, if somehow “autistic” is making its way into the popular culture as a hip new put-down, a synonym for “ridiculous,” “stupid,” or “idiotic.”

Mom-NOS wrote a letter to the staff of Patient Relations (which seems an egregious misnomer in the present case—so much for being “patient” about “relations” with others in that hospital snack shop) and received a response within twenty minutes of sending her email (”It is unacceptable when our patients and visitors are exposed to inappropriate remarks and behavior at any location within the hospital.”)

Unfortunately, one does not usually such a fast, and such a courteous and open-minded, response when trying to point out and expose autism myths. One rather meets some amount of contention, some vilification of various parties, and more than a little strife. When I posted on autism mythology a few days ago, the myths I highlighted were the vaccine-autism connection myth (with Dr. Andrew Wakefield being one of this myth’s key supporters) and the epidemic of autism myth, not to mention the much older myth of the refrigerator mother. Discussion (with opinions strongly expressed) ensued in the comments to my post about something that I do not believe is a myth, and which I will hazard to describe as the “neurodiversity myth” or (as some might rather phrase it) the “neurodiverse” or “ND” “movement.” As I understand it, “neurodiversity” is considered by some (not by me) to be a “myth” because of notions such as (1) autism is a difference and not a disability or disorder and (2) there are many similarities between autistic adults who are “high-functioning” enough so that they can speak, write blogs and books, work, etc. and autistic children who are considered “severe” and “low-functioning” and cannot talk, have many difficult behaviors, etc.. Broadly speaking, those who belief that “neurodiversity is a myth” seek to separate the hfa from the lfa and sometimes claim that these are completely different entities.

The latest Ped Med article, Autism myths abound (February 14) also highlights the numerous myths about autism that still persist: “A newfound influx of interest and attention in recent years has started to demystify the puzzling condition once blamed on ‘refrigerator moms.’ Nevertheless, the intractable disorder remains mired in uncertainties and misunderstandings, specialists say.” (I would like to note that referring to autism as “intractable”—difficult to manage and get a hold of; unruly—seems to me to partake of a certain stereotype about autistic persons as “impossible” to manage and to deal with.) Suggesting that autism still “suffers” from “an identity crisis” (of what sort is not clearly defined), the Ped Med article quotes Morton Gernsbacher, Vilas Research Professor and Sir Frederic Bartlett Professor of Psychology at the University of Wisconsin, Madison, and the parent of an autistic son:

“It behooves us as scientists to distinguish uninformed stereotypes from scientific reality and to move beyond myths and misconceptions.”
……
“I would like scientists to become more skeptical of the stereotypes that flourish about autism and members of society to become more skeptical of the myths that are circulated.”

Gernsbacher refers specifically to the notion that autistic persons lack “theory of mind“—the ability to understand that another person’s thoughts, beliefs, emotions, etc. can differ from one’s own; a panel of autism experts addressed the issue of popular misconceptions about autism at the 2006 annual meeting of the American Association for the Advancement of Science. In On Not Being Human, her February Presidential Column for the Observer, the publication of the Assocation for Psychological Science, Gernbacher writes:

Consider the theorizing of another internationally acclaimed psychological scientist, presented in a widely circulated scholarly journal. After proposing the thesis that “cultural learning” is “a uniquely human form of social learning that allows for a fidelity of transition of behaviors and information among conspecifics,” the authors argued that, like chimpanzees, “autistic children show little or no evidence of cultural learning.” However, the authors ran into a similar deficit of empirical proof, best captured by their admission: “It can be stated with confidence that the vast majority of autistic children do not engage in [a specific type of cultural] learning. Although we are aware of no studies that specifically test for [this type of cultural] learning per se…” In this case, the authors salvaged their thesis by observing that “one robust and recurrent finding is that throughout their development autistic children show significant deficits in their ability to interact with and relate to peers.”

The authors are right; difficulty developing “peer relationships appropriate to developmental level” is a bona fide DSM-IV diagnostic criterion for autism. But by this logic, any DSM-IV diagnostic criterion for any DSM-IV diagnosis could be used as a basis for segregating humans who fit the diagnosis from humans who don’t. And if the diagnostic criterion (e.g., reading disorder, written expression disorder, or erectile disorder) is also met by any nonhuman species, it can become the basis for dehumanization.

Gernsbacher counters more than a few stereotypes about autism in On Not Being Human, the first being that autistic persons—due to their “deficits” in language, communication, social skills, empathy, abstract thinking (you might check the DSM-IV for a few more such “deficits”)—-are not fully “human.” From my experiences with my autistic son Charlie, I would argue that, rather than lacking such “human” traits as language and empathy, he very much has these but does not express them in the ways that the majority of human beings have learned how to do. (See, for example, Charlie’s very emotional, and very delayed, reaction to his wrecking of a certain prized posssession of his dad’s—Charlie felt very bad, I would say, but it took a few days for Charlie to process all that feeling and then express it.)

The second stereotype about autism that Gernsbacher highlights is that autistic persons are incapable of “cultural learning”—that is (in a very basic definition), how a group or a society passes on new learning through experience and participation. On the surface, this sort of learning is something that Charlie particularly struggles with. This is why Charlie is in a self-contained autism classroom with a 1:1 teacher:student ratio; why he has been most successful at learning academic subjects like the alphabet and reading when these are presented to him via flashcards with learning methods individually tailored to his cognitive needs. The students in Charlie’s classroom do participate in some highly scripted group activities—and just learning how to be and then how to learn in a group is a huge task for Charlie.

This is not to say that, gradually, slowly, and always at his own pace, Charlie is learning through his experiences and by being part of a group: Gradually, slowly, Charlie has been acquiring some sense of how different musical styles draw from each other and combine different elements to create some new and unique sound. For instance, on recently hearing the Beatles’ Yellow Submarine, Charlie himself connected something in the lilt and ballad form of the tune—the way all four voices joined together for the choruses—with the sound of the Australian children’s group, the Wiggles. Charlie’s musical education has been anything but structured and well-planned; he has been taking piano lessons since last summer and learned to play some simple songs, but most of his music classes have been in the back seat of the car listening to Jim’s latest choices (Jimi Hendrix last summer, ska and reggae this fall, the Beatles as of this January and then as of yesterday, the King himself). I would have to say that Charlie “experiences” the music from the way he sits up straight and head at the slant that means he is thinking, and that he “participates” in that, later, Charlie sings bars from quite a few albums on his own (like the Rivers of Babylon).

Further, if it is thought that art—the capacity for aesthetic experience and creation—is another aspect of what makes us human, I would suggest that Charlie certainly displays a sense (and tells us this, whether in words or by other means) for what he thinks good music or not. Charlie, I should also say, is a a 9 1/2 child who has never been considered “high-functioning” but “classically” if not “severely” autistic. He has minimal language and a history of self-injurious behavior (head-banging) and he is very far “behind” his same-age peers in his academic skills. I never think of him as a preschooler or toddler in the physique of a boy who is almost as tall as me (indeed, I consider reference to such yet another autism myth): I think of Charlie as a 9 1/2 year old who is almost as tall as his mother who understands as much as any 9 1/2 year old boy, but does not always have th verbal repertoire to communicate this. Just from spending a few hours with Charlie or reading his IEP and seeing Charlie do his best to remember the 21 nouns he has learned to read, and I would doubt if you (I would doubt that I) would think that such a child could grasp that there is a musical lineage from the Fab Four to a children’s singing group. Charlie is no savant in any area; when he is listening to music, he does not appear to be so much listening as idly staring out the window, and I am, then, merely concocting yet another autism myth in staking claims that my “lfa” son understands something about music, about culture, that he is quite unable to put into words.

But it is, perhaps, our impervious disbelief that someone who does not look like they are paying attention is not paying attention, is one reason that so many autism myths abound. The ancient Pre-Socratic philosopher Heraclitus said that

The real constitution is accustomed to hide itself. [physis kryptesthai philei]

There is something about Charlie—there is something about autism, something intrinsic to autism by its very nature (”nature” is the basic meaning of physis)—that indeed likes (philei) to conceal itself, however intentionally or not; that does not feel the need to present itself all the time to the public; and that therefore requires of us to learn to identify what that physis, that “real constitution” is, rather than create myths and misperceptions, and to manufacture misinformation under the guise of facts, about autism.

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