AutAc Reads IADK, Part 1: Part 1

In a Different Key: The Story of Autism actually contains 46 short chapters, grouped into “parts.”  Since none of these chapters is really long enough for a review, though, I decided to review the book by Parts.

Part 1 contains six short chapters.  As a whole, it focuses mostly on the childhood and adolescence of Donald Triplett – Leo Kanner’s “Case 1,” the first child described in his 1943 paper “Autistic Disturbances of Affective Contact” [pdf].  The authors’ telling of the story is engaging and clear; it makes a quick, entertaining read.

Nonetheless, it reminds me of nothing so much as those mass-market afterschool-special-esque novels that were so popular when I was in elementary and middle school.  You may remember these.  They had titles like Is My Sister Dying? (spoiler: yes, of kidney failure) and What’s Wrong With Daddy? (spoiler: Alzheimer’s).  They were always told from the point of view of a “normal,” “healthy” family member.  And while they attempted to shed light on unusual conditions and create empathy in the reader, they always did so by turning the family member with the condition into a spectacle, sideshow, or sob story.  The moral was that You, Normal Person, should Feel Bad for These Poor Unfortunates.

Donvan and Zucker’s retelling of Donald Triplett’s early years left a similar taste in my mouth.  By autism literature standards, it’s actually not the worst thing I’ve read.  There are occasional uses of phrases like “baffling,” “puzzle,” “mystery,” or “for no reason,” but they’re subtle, and they’re clearly intended to reflect the frame of mind of Donald’s parents (whether they limit themselves to this effect is another question).  But again, I am reminded that the primary audience for this book is neither autistic people nor people who see autistic people as fundamentally human – and that, consequently, the actual audience for this book is not likely to walk away seeing autistic people as fundamentally human.

Approximately halfway through the six-chapter retelling of Donald’s story, the book diverges into a discussion first of Kanner’s work on “infantile autism,” and then – for the span of about six pages – into speculation on cases of autism that appear in medical and religious literature before a separate concept or diagnosis existed.

I found both of these to be summarily and sloppily written.  The research has already been done on both of these topics; the information and resources exist to produce much more clear, organized, and accurate six-page summaries of each topic.  Alternately, the story of Donald the authors are telling would have been harmed not at all by simply skipping these two summaries altogether.

Yet the authors chose to give us summaries that read as perfunctory and rushed, and to drop them smack in the middle of Donald’s story, interrupting what was an otherwise solid narrative flow.  I’m hoping this was a one-off mistake by either the writers or their editors, and not an indication of their ability to organize the rest of their information.

I was pleasantly surprised to discover one mistake the authors did not make, which was to conflate changeling “folktales” with autism.  The book’s surface and mainstream treatment of its topic so far indicates that had the authors gone that route, they would have made the exact same surface and mainstream errors everyone else does – like assuming that changeling stories somehow describe autistic children.  The word “changeling” never even appears in Part 1, for which I am grateful.  (Perhaps a perfunctory summary is worth something after all!)

What we have, so far, are two authors who are shaping a view of autism as a puzzle, a mystery, a weird Otherness that “we normals” ought to have some sympathy for (the poor dears).  This is hardly novel, and it runs the risk of taking us into all kinds of heinous stereotypes.  We’ll see where it goes.

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18 thoughts on “AutAc Reads IADK, Part 1: Part 1

  1. When it comes to changeling folktales, I believe that there may be some truth to the idea that so-called “changelings” may actually have been disabled kids, like autistics (whose abilities and tendencies may have occasionally mirrored so-called “changeling” characteristics) or those with Down’s syndrome (who might have been mistaken for goblins). I also believe, however, that some of those stories ring completely and utterly false, and they are generally told from a parent’s and/or neighbor’s grossly ableist point of view (even the ones that ring somewhat true), sort of like Ye Olde Autism Speaks Narrative. In a way, it is like modern ableist parents still believe that their autistic kids are changelings, yet nowadays they blame a personified “autism” instead of “the fairies” for “stealing” the kid that was theirs all along. This kind of narrative is really not all that fundamentally different from calling autistic people “changelings”; I suspect that the reason that you don’t like the mention of changelings is that these mentions are used in ableist literature as a reflection on the autistic people rather than as the reflections of the societal ableism I believe they actually are.
    Of course, those kids were not actually changelings; what I am saying is that was the excuse parents used for abusing and killing autistic children, and that the changeling stories, while they did not always describe the kids entirely accurately, were really a product of ableist hysteria. Perhaps it would be better to view “changeling” stories and certain other legends, such as those of the “Wulver”, not so much an explanation of disabled kids as a product of ableism that enabled parents of disabled kids and other villagers to subject disabled kids (and adults) to othering.
    In short, I believe that it is wrong to treat kids as “changelings” who are “stolen away” by an entity like “autism” or “the fairies”; it is immensely hurtful to a kid to be treated that way, and if your parents see you as a “changeling” of sorts and assume that there is a “normal kid” hidden away, either within you or in a magical land, you are going to be seriously traumatized and at risk of being abused and/or killed.
    I think RealSocialSkills sums up well the damage that can be done by treating a kid like a “changeling” in this article.
    http://realsocialskills.org/post/144456734442/when-professionals-assume-that-parents-of-disabled

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    1. What you describe here is exactly what “common sense”, in the post-Enlightenment era, has us all believing about changeling stories. Everyone believes this. It makes total sense.

      it’s also totally unsupported by the evidence.

      This has been the central focus of my research for the past year. Tl;dr version: the “changeling” story was invented by the Reformation elite as a pedagogical tool for teaching the “common folk” about the (to the elite) concrete and irrefutable reality of the Devil’s existence. It wasn’t treated as a “folk tale” until the nineteenth century, when the intellectual elite claimed to no longer have any use for it….

      ….Except, of course, that it’s still the driving trope of autism diagnosis, treatment ,and cultural positioning today. In a sense the intellectual elite never abandoned it; they just gave it more impressive-sounding vocabulary. (The RSS post does an excellent job of summing this up, and it is one of only two sources I’ve found that actually interrogate the grief model.)

      So, no, there were no medieval or early-modern peasants telling fairy stories to explain why their kids flapped or didn’t talk or were unusually interested in certain things. But there were priests and preachers telling these stories as allegories for the precarious state of the human soul, on the one side, and Locke, Descartes, and their ilk insisting that humanity is lodged in the capacity for “reason” (which was replacing “honor” and “grace” as the cultural currency du jour) on the other. Two hundred years of Telephone later, and what you describe might as well be “true,” given how widely it’s believed, even though there isn’t a scrap of evidence to back it up.

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      1. It does not surprise me to find out that changeling stories were kind of like the religious version of what organizations like A$ do today. The main difference is that they (the elite) were talking about the devil (and for all I know, maybe they were using reports of autistic behavior to bolster that), whereas Autism Speaks is talking about “autism” as if it kind of were the devil. And I wouldn’t be shocked if something like ableism was used to support the intellectual elite talking that way, sort of the way it is used to demonize autism nowadays. So, in other words, changeling stories are no more an invention of the common folk than the narratives about autism today are – all of them were invented by the “experts” of the day, whether or not they were passed off as being told by a villager; the only difference between he “changeling” narrative and the A$ narrative is that we know for certain parents back the latter narrative up.
        I bet it would have been horrible to be a kid who appeared to do some of the things that “changelings” supposedly did and heard about them from the “experts” of the day (say, the kid might be a picky eater, good with songs, whatnot); you might feel as though you were possessed by the Devil himself, and wonder if you were doomed to hell. In a way, that is not so different from how autistic kids feel today when they hear all this demonization of autism that is a result of “autism awareness” campaigns – it’s just that the “Devil” in these “expert”-sanctioned tales take a different form.

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      2. I should also add on top of my guess about the parallels between changeling stories and A$ accounts that the scientific community and sources such as Wikipedia seems to be strangely silent on the topic of changelings, given that they are supposedly accounts of autistic kids. this is the same scientific community that “cares SO much about making sure that the person using facilitated communication or RPM is not being influenced by the facilitator, because it would be a shame if we actually thought that it was even remotely possible that any of those words were their own when they really weren’t” or does things like express concern about FC “stealing disabled people’s voices” using only examples like someone typing “sandwich” and reaching for pizza, never the more egregious violations that occur when, for instance, autistics are trained by rote to say things without ever being told why they must or really understand them, and PARENTS of autistic kids write things like “Dear world; this is what autism feels like to me” supposedly from the point of view of their autistic child. I have not heard a peep out of scientists about this. Strange.
        As far as I can see, there are practically no sources, if any, explaining this about changeling myths. Practically every source you read online states that changelings are an honest-to-goodness legend. Unsurprising, given the amount of sway ableism has on our society, not to mention the reluctance to contradict “experts”.

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  2. Of course, the only part of the scientific community that mentions anything about the mythical nature of the changeling myths is those who actually researched those myths – those who published a historical journal. never mind that the attitudes that appear to be shown in changeling stories are strikingly similar to the real attitudes shown by “autism parents” today.

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  3. I did also mention the “Wulver”, which is a Scottish werewolf-type creature that was said to fish and leave fish on poor people’s windowsills, and supposedly left you alone if you left it alone. That could be based on disabled men (including autistics) who could not live in the village but still cared about the villagers and thus would want to help out villagers in need with their leftover food; casting them as a wolfish creature would mean villagers would not have to question why their actions made it impossible for a perfectly nice man born in the village to live in the village with them. Maybe, unlike the changeling tales, the Wulver tales, which appear to be restricted to Scotland and have a formula more similar to that of other legends than that of European changeling stories (but not African ones), were actually real legends, and based on things like rejected adult disabled people that the person’s fellow villagers did not want to consider, because it would force them to look at their own actions.

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    1. I haven’t read anything about the Wulver, so that’s interesting.

      One of the operative questions I’ve stumbled upon in researching “folk tale” versions of disability is: How far back are you going? For instance, part of what made me suspect that changeling tales don’t have anything to do with disability prior to the Reformation is the realization that medieval conceptions of disability (especially ID) are not at all like our current conceptions of disability. In particular, there was no clear distinction between “abled” and “disabled,” because everyone generally understood that the body’s state of health/ability was temporary and, to a large degree, capricious. Humans only had one right, and that was the right to be baptized. If a child was born looking recognizably human, it was human (and theologians fought over whether *any* child born of a human ought to be baptized no matter what the kid looked like).

      Ableism certainly existed, but it depended more on what your particular impairment was meant to communicate socially, rather than the mere fact of its existence. (For instance, soldiers who had lost a hand in the Crusades frequently carried papers from the king explaining that they had lost a hand in service, so that they wouldn’t be cast out as criminals – which was the most common reason for having lost a hand. People who had been born without one or both, or lost them while working or in some other non-criminal way, often carried a note from their lord for the same reason.) Since a social concept of intellectual or developmental disability didn’t *exist,* it also had no social *meaning,* and thus carried no stigma of its own.

      If the Wulver tales predate the Reformation, I’d have to question whether the interpretation of the Wulver as “helpful but outcast disabled person” really fits within the structure of the society. Anglo-Saxon society in particular was rather accepting of impairment – what disabled people was the lack of a *family* (including all the trusted people who could vouch for you), and you could be disabled by this whether or not you had a physical or mental impairment. Impairment wouldn’t get you outcast, especially if you could do something productive like fish; being outcast was the ultimate betrayal, the removal of your identity as a human by the very people you thought you could trust the most. If your family chose to side with your betrayers on that instead of following you into it, why would you want to help them?

      If the Wulver tales don’t predate the Reformation, of course, then none of the above means anything.

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      1. I didn’t know that about disability in the Middle Ages. I suspected that was true of Native Americans (up until they were cast into residential schools, at which point ableism reared its ugly head in many of these tribes, along with sexism), but their societies were different, more egalitarian, so I assumed that the same was not true of medieval people. Actually, the existence of things like Plains Indians sign language strongly suggest that Native Americans were respectful towards disability. Also, the existence of the quipu writing system, which consisted of knots tied in different colored strings, suggests that the Inca as well cared about accommodating disabilities such as blindness; even though the ropes were color-coded, a blind person could still read the records by feeling the knots if, at any rate, a seeing person told them what color the strings were.

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      2. Not to mention that if the Wulver tales do predate the Reformation and they really are based on a disabled person who could not live in the village, if not due to rejection then maybe due to lack of accommodation for a social or sensory disability (i.e. someone who is autistic and has misophonia having to listen to a loved one making really unpleasant hacking noises and not going outside to do so even when they can, and then the other villagers only wanting him to live in the house with the person who makes hacking noises because the autistic villager with misophonia looks funny and throat noises are “no big deal”, or else an autistic constantly being given invitations he couldn’t refuse to the point of extreme social exhaustion), it could be that someone did not want to admit that they were making their environment inhospitable for somebody in some fashion or another, thus making life in the village a living hell for that guy without “technically” rejecting him, but nevertheless making it so that he couldn’t live there without being stressed to the Nth degree and had to live elsewhere instead, and could not necessarily feel like he could complain about whatever’s bothering him because it is supposed to be no big deal.

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