AutAc Reads IADK, Part 4: Part IV

Part Zero, Part One, Part Two, Part Three

Part IV of IN A DIFFERENT KEY is about ABA.  Like the other topics handled in the book prior to Part IV, the authors take a sympathetic approach to the topic.

(Note: If you find ABA to be a triggering topic – as many autistic people subjected to it do – you may wish to stop reading here.)

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The authors’ sympathetic approach begins with their sympathetic portrayal of Ivar Lovaas, whom they humanize by talking about his flaws (he was, among other things, a known and proud chauvinist) the same way one might talk about one’s simple dog.  The audience is thus prepared for someone whose actions they might not always approve of, but whom they generally find likeable anyway.

When the authors introduce us to Lovaas’s early methods, which involved hitting children (he lamented in one interview that his department prevented him from hitting the children harder than he was), subjecting them to electric shocks from a cattle prod, and similar abuses, not only are we prepared to accept Lovaas’s faults as a person, but the authors take special care to ensure that we’re willing to accept this treatment of the children, as well.  The authors take particular care to describe Lovaas’s early patients as “hopeless” and to indicate strongly that all of them relapsed without regular exposure to cattle prods and slaps to the face.

Lovaas’s use of “aversives” did face considerable pushback in the years after his approach was introduced.  But at no point in the entire 65 pages that comprise Part IV do the authors themselves condemn these practices.  Even as the authors are telling us about the pushback from other researchers and from certain parents, they remain carefully neutral about the use of aversives themselves.  The use of certain other abusive methods, such as deliberately withholding food from children unless they did what they were told, is cast as beneficial therapy – not even a hint that it could be problematic.

The book stops just short of announcing that ABA remains some kind of “gold standard” of autism therapy that works when nothing else does.  But it certainly sets up readers to draw that conclusion, particularly as it emphasizes the rhetoric of “recovery” that started following Lovaas’s work in the 1980s.  In keeping with the previous chapters, it does not even attempt to ask critical questions, such as how the children felt while being subjected to the “therapy,” the long-term results on their well-being, or whether the “results” were actually the outcomes of ongoing development rather than the ABA itself.

(Full disclosure: One of my personal biggest concerns about ABA is that it is swamped in rhetoric about how it is “evidence-based” and “scientific,” when in fact there is no way to know whether the ABA is what changes autistic kids’ behavior, or if their gains are simply the result of their own developmental paths.  Because we cannot create a control group for a condition that produces such highly variable developmental trajectories from person to person, we cannot test how any one person would have done with ABA versus without.)

The authors, incidentally, also have very little emotional reaction to Lovaas’s use of a cattle prod, or to the later development of the SIBIS system, which used electrical shocks as a response to self-injurious headbanging.  They imply that electrical shocks are vanishingly rare in ABA programs, but they fail to mention that the Judge Rotenberg Center, among other places, still uses them – and that there is no evidence that they help anyone and a great deal of evidence that they harm.

Again, the authors utterly fail to connect the “past” to the present, implying that the “bad old days” are over when in fact they still lurk in the options presented to exactly the sort of unwary parent who would pick up this book.

This problem is so pervasive that it’s hard to get too worked up over this section’s other major flaw of note, which is that whenever the authors cannot find a clear “winner” to champion in a historical story, their otherwise brilliantly nuanced grasp of pathos deflates like a cheap balloon.

Halfway through Part IV, the authors talk about the work of Eric Schopler as a way to demonstrate the kind of pushback Lovaas was getting.  But, since they cannot cast either Lovaas or Schopler as the clear “anti-parent” party, the story simply falls flat.  It’s incredibly dry, and its dryness is incredibly obvious when compared to the heart-wrenching section on filicide or the vivid depictions of twentieth-century mental institutions.  Without a parental audiences’ heartstrings to tug, the authors have little command of their material and even less understanding of it.  Which is a shame, because the Schopler-Bettelheim and Schopler-Lovaas confrontations were entertaining in their own right.

AutAc Reads IADK, Part 3: Part III

Part Zero, Part One, Part Two

Part III of John Donvan and Caren Zucker’s In a Different Key is about institutions.

The good news is that the book does not overtly praise, empathize with, or support institutions or the institutionalization of autistic people.  The bad news is that the book doesn’t overly condemn them, either.

The authors tell the stories of several autistic people who spent all or nearly all of their lives in institutions.  In telling this story, they also provide a background of mental institutions in the twentieth century – one that doesn’t mind giving us the more gruesome, lurid, or unpleasant details.  As with previous chapters, the authors do a masterful job of twisting our heartstrings with these, especially if the “we” in question happen to be the parents of a child whom, a few short decades ago, we might have consigned to one of these places.

The authors seem to condemn the worst of the institutional abuses of the previous century.  Of course they do.  Condemning things like icepick lobotomies and tying children to beds is shooting fish in a barrel.  (Note, though, the relative lack of condemnation of electrical shocks used as ABA aversives that will appear in the next chapter.)   What they fail to do, however, is to point out the many ways in which autistic people are still institutionalized – or to talk about the many proposed or progressing projects to re-institutionalize us.

This problem is one that permeates the book so far.  For a tome whose subtitle is The Story of Autism, the authors make few or no attempts whatsover to trace twentieth-century approaches to autism to the present day.  They do no critical thinking about autism’s “past” at all.  At best this seems to be a result of their audience focus: parents today, operating in a somewhat different world, would greatly like to hear that the mistakes of the “past” cannot be repeated, that we have learned our lesson, that we are better and more humane toward autistic children (excuse me, “children with autism”) now.  Of course they would.  Very few parents want to hear that their best option is to abuse, neglect, or abandon their child.

But.  By failing to connect autism’s past to its present by pointing out that the worst abuses of the past sixty years are still with us today, the authors do parents a huge disservice. They give parents a way to feel better about parenting a child with autism, but they give parents no help whatsoever in actually doing that work.  Instead of thoughtful examination of the terrain, the book offers a pablum disguised as one.  It’s okay, parents.  We used to be mean to kids with autism, but we know better now.  Sure, we’re still doing many of the same things we always did, but at least now we’re doing them for your kids’ own good.

Nonsense.  We were always doing these things “for your kids’ own good.”  And they have never been good.

Let’s be clear: this book’s goal is to help parents feel better about the lemons labeled “autism” that life has handed the parent.  It does not exist to help anyone better understand, empathize with, or support autistic people.  And it’s a good thing that it doesn’t, because in many ways, it does the exact opposite.

Autie Autism and the Incredible CFP

The ABA section of In A Different Key is turning out to be difficult to read, which I expected, although it is difficult for reasons I did not expect.  I expected it to be traumatizing; instead it is, surprisingly, boring.

So, while I continue to slog through it, here’s something else in the meantime.

This CFP is giving me fits.  I’ll be submitting something, of course – when someone publishes a CFP that says, in essence, “We’re doing a special issue about your focus area in one of the top two journals in your field,” you get on that.  But the CFP itself…eh.

First, I don’t find the questions presented particularly engaging.  Part of this is the format (closed-ended questions, really?).  Most of it is the content.  The short answer to all three of those questions is “No,” and only the third one has a “No” interesting enough to generate a paper.

Second, check out the literal footnote: “We welcome contributions from autistic/neuro-atypical persons.”

This footnote is an object lesson in What’s Wrong With Academic Discussions of Autism Narrative Today.  There are several autistic people, who are also academics in various fields, writing about autistic narrative/autistic ethnography/autie-biography/etc.  Yet this footnote, by “welcoming” contributions “from autistic/neuro-atypical persons,” manages to elide the existence of autistic academics (with, for whatever they’re worth here, actual credentials in relevant fields) completely.  We’re not interesting for our contributions to the academic discussion of autistic narrative.  We’re only interesting as self-narrating zoo exhibits.

Because satire has become my main defense against constant reminders that I am Not Quite Human, several Autistic friends and I generated a series of children’s book titles inspired by this CFP.  How are these for “autism narratives”?

Autie Autism and the Self Narrating Zoo Exhibit

Autie Autism and Why Are They Killing Us?

Autie Autism and The Changeling of Death

Autie Autism Gets a Tenure-Track Job and Publishes a Monograph But No One Asks For Their Contribution to the JLCDS Special Issue on Autism Narrative

Autie Autism Can’t Get a Tenure-Track Job Beecause the Interview Space is Economically and Cognitively Inaccessible, Starts a Publishing Company, Creates a Stable Pool of Over 100 Contributing Neurodivergent Artists, Publishes an Interdisciplinary Multi-Modal Monograph Memoir in Verse, Comes Out As Trans, STILL DOESN’T GET A TENURE-TRACK JOB, STILL DOESN’T GET INVITED

Autie Autism Seizes the Means of Production

Autie Autism Has Been Writing About This Shit Almost 20 Years But No One Listens Because Parents

Autie Autism and The Activism Career That Started 10 Years Before Your Book and Is Still Going 10 Years After But You Still Haven’t Caught On

Autie Autism and the Retail Job Because Despite Ten Years of Writing and Five Years in Disability Studies There Is No Job for a Self-Narrating Zoo Exhibit That Critiques Its Employer

Autie Autism and This Is Your Special Interest Field But No One Is Hiring Pissed Off Autistics

Autie Autism and the Special Interest That Isn’t STEM

Autie Autism and Everyone Keeps Telling Me To Take a Job in Tech Even Though I Know Nothing About Tech

Autie Autism and I Don’t See Any Representations of Myself in Media So I Head-Canon Some and People Tell Me I’m Hurting Autistics

Autie Autism and the Professionals Denying Me Being Autistic Because [Pick All That Apply]: A) I Am Too Social, B) I Am Verbal, C) I Appear To Make Eye Contact, D) I Have a Job, E) I Am a Woman, F) Other Rationale That Basically Means I’m Not a White, Middle-Class Little Boy With Whatever Stereotypes They’ve Picked Up

Autie Autism and the Autism Diagnosis Based on Her Special Interest in Star Trek

Autie Autism and Infiltrating Autism Research Spaces

Autie Autism and The List Of Titles That is Totally Going in the Paper About How Autie Autism Exists Thank You

Should I Say “Autistic Person”? Or “Person With Autism”?

My seven-year-old niece recently received her paper diagnosis.  To welcome her into her newly-recognized autistic family, I enlisted the community’s help.  We put together a book of welcoming messages, artwork, and short informational articles she could use to learn more about what it means to be, not only autistic, but capital-A Autistic.

This is the third of the three short essays I included.

Should I Say “Autistic Person” or “Person With Autism”?

When some people talk about autistic people, they say “autistic people.”  Others say “people with autism.”  Sometimes, these two groups of people argue over which is the “right” thing to say.

Lots of autistic people prefer “autistic person” to “person with autism.”  For them, their autistic brain is a part of them.  It’s not something that was added on or that they just put on in the mornings, the way you might put on a blue shirt.  They want others to notice that their brain is a special part of who they are and an okay part of who they are.

Many doctors, teachers, and counselors prefer “person with autism.”  They feel that it is more respectful to mention the word “person” first.  They want to emphasize that being a person is what makes someone special and okay, whether or not they have autism.

You can choose whether you want to use “autistic person” or “person with autism” when you talk about yourself.  You can also change your mind!

When you meet other autistic people, the polite thing to do is ask which one they prefer, and then use it when you talk about them.  For instance, I prefer “autistic person,” so if you wanted to talk about me, the polite thing to do would be to say, “My aunt Dani is an autistic person.”  My friend Emma prefers “person with autism.”  So if we wanted to talk about her, we would say “Our friend Emma is a person with autism.”

It is okay to insist that people call you what you want to be called. Some people might get frustrated if you do.  But you have the right to ask people to treat you with the same respect you give to them.

Who Is the Autistic Party Giraffe?

My seven-year-old niece recently received her paper diagnosis.  To welcome her into her newly-recognized autistic family, I enlisted the community’s help.  We put together a book of welcoming messages, artwork, and short informational articles she could use to learn more about what it means to be, not only autistic, but capital-A Autistic.

This is the second of the three short essays I included.

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Who Is the Autistic Party Giraffe?

The Autistic Party Giraffe was born during a conversation about who gets to tell us what it means to be autistic.  The answer?  We do!

Autism is all over the news right now, and everybody has an opinion about what it means to be autistic.  Some of those opinions, like the ones in this book, are positive: we like our brains and we like each other.  Some of those opinions are not so positive: people say that we’re broken, or tragic, or “stupid.”

The Autistic Party Giraffe is here to remind you that you get to decide what being autistic means to you.   You can listen to other people’s opinions and try out their advice, but to make the final decision, you should listen to your heart.

PS: the Autistic Party Giraffe is a “she,” and her name is Montana.

What Is Autism?, in Plain Language

EDIT: Lei at Parenting Autistic Children with Love and Acceptance (PACLA) made a flyer version of this essay, which you can download and distribute freely by clicking this link [pdf].

My seven-year-old niece recently had bestowed upon her a piece of paper that confirms what I’ve been saying for a year now: THIS KID IS ME.

By which I mean she’s one of us.

To welcome her into her newly-recognized autistic family, I enlisted the community’s help.  We put together a book of welcoming messages, artwork, and short informational articles she could use to learn more about what it means to be, not only autistic, but capital-A Autistic.

This is the first of the three short essays I included.

 What is Autism?
Autism is one of the many different variations of human brain. Because our brains are wired differently than most people’s brains, we think, say, and act in ways that are often different from most people – and the way most people think, say, and act can seem very weird to us sometimes!

Doctors diagnose autism by looking at the ways we communicate and behave. Doctors have all kinds of theories about what autism is and the best way to help autistic people do the things they want to do.

Some of these theories make a lot of sense. For example, one doctor believes that the main difference in our brains is that they have lots and lots of connections between brain-parts that most brains don’t have. As a result, we experience colors, sounds, textures, smells, tastes, and emotions more strongly than other people. (This is called the Intense World Theory.)

Some doctors’ theories don’t make much sense at all. For instance, another doctor believes that autism makes us unable to really understand anything around us, or to really feel love for other people. (This is called Theory of Mind.) You and I both know that’s not true!

An autistic brain isn’t a “bad” or “wrong” brain to have. It’s just different. Because the world is set up to work best with non-autistic brains, having an autistic brain can be tough sometimes. The world isn’t designed for our brains! But we can do lots of things to change the environment so that both autistic and non-autistic brains can share it together.

AutAc Reads IADK, Part 2: Part II

Part II is titled “The Blame Game,” and now that I’ve finished reading it, that title makes me want to laughcry in extreme fashion.

Here’s what I mean.

Part II starts with an exploration – okay, a takedown – of the “refrigerator mother” theory of autism.  This theory prevailed throughout most of the 1950s and 1960s, was based on a quasi-Freudian approach that assumed autism was caused by mothering so crappy it caused the child to withdraw traumatically from life itself, and was championed at various times by both Leo Kanner (who would later retract his support) and Bruno Bettelheim.

The authors do a really brilliant job here of getting the reader to side with the parents against Bettelheim.  In fact, they manage to do it in a paragraph and a half, without once mentioning Bettelheim’s name or the words “refrigerator mother.”  By the time we’re introduced to the concept, we already think it’s outrageous.  It’s an entirely pathos-based rhetorical move, and it’s very well executed.

It is, in fact, one of the best rhetorical moves in the book, and one of the most dangerous for autistic people.

The authors make some noticeable ethos-based slips as they develop the story of Bettelheim’s “mom did it” theory and the parents’ reactions to it, however.  For instance, they repeatedly fall back on the stereotype that autistic children have, in Uta Frith’s words, “a haunting and somehow otherworldly beauty.”  They also seem oblivious to the fact that Bettelheim, for whom they show no sympathy, did a great deal of work on the question of feral children, including Victor, the “Wild Boy of Aveyron,” for whom they showed a great deal of sympathy in the preceding chapters.  Bettelheim’s theory of stories being necessary to childhood development they mention not at all, even though that theory is crucial to understanding “the story of autism.”

And their attempt to explain what it’s like for an autistic person to go to the dentist is, while valiant, entirely non-autistic in its assumptions and entirely off the mark.  (For a book that purports to be about autism to get one of the most commonly-shared autistic experiences this wrong displays what Simon Baron-Cohen would call a severe impairment in Theory of Mind.)

These slips severely undermine the ethos of the authors’ arguments – but the authors are interested in tugging our heartstrings, not establishing their credibility.  And they assume the “our” whose heartstrings are being tugged are non-autistic parents of autistic children, or people who could imagine being non-autistic parents of autistic children.

Part II of this book is written for parents.  Period.  Its focus is on parental attempts (including those of Ruth Sullivan and Bernard Rimland) to challenge the prevailing “refrigerator mother” theory of autism and to find other resources for their children – everything from chromosomal testing to access to public schooling.  Aimed toward that audience, it is entirely engaging and absorbing.  It is nearly impossible not to identify with, and to feel for, these parents.  (I know.  I tried.)

Which is precisely what makes the final chapter so powerful, and so powerfully dangerous.

[Trigger Warning: Murder of an autistic person at the hands of their caregivers.  Many of my readers know this story, even if they don’t know this particular version of it.  A list of people murdered in similar circumstances can be found here.  It takes over an hour to read aloud.

If you need to stop here, know this: there is nothing in the last section of this review that you do not already know, or cannot already deduce from the information given above.

If you’re not sure why someone would want to stop here, please keep reading.  The rest of the review will make it clear.]

The last chapter in Part II tells the story of the murder of 13-year-old Dougie Gibson, in 1971.  As the authors tell it, on the last day of his life, Dougie’s father, Alec, took him to the local McDonald’s for Dougie’s favorite meal (fries and a Coke).  Then they returned home, where Alec shot Dougie in the head, put the gun on the kitchen table, and waited for the cops to arrive.  Alec was later sentenced to life imprisonment.

If the authors had merely recited these facts, this section might not be so dangerous.  If the authors had recited these facts and strongly condemned them, or reported ways in which someone (anyone!) took strong steps to prevent such an event from occurring again, this section might actually be helpful to autistic people.  It might actually help to stem the tide of murders of autistic people by the family members and caregivers they are supposed to trust.

The authors do neither of these things.

The authors, instead, sympathize with Alec Gibson.  They portray other non-autistic parents of autistic children as sympathizing with him as well – as “understanding” why he would do such a thing.  They portray Dougie as an eternal child who, if not entirely “out of control” at the moment of his death, soon would be – and this “fact” as sufficient to justify his murder.  By so doing, they implicitly condemn the life sentence Gibson received.

And if this endorsement of Dougie’s murder existed in a vacuum, it would be terrible enough.  But it doesn’t.  It exists within the context of several connected chapters that are each powerfully constructed to make us sympathize with the parents.  By the time we get to Dougie’s death, only the most critical (or autistic) of readers will even hesitate.  Most won’t.  They’ll see Alec’s actions as the authors want us to see them: as sad, but justifiable.  They’ll see Alec’s life sentence as the authors want us to see them: an overreaction by an uncaring court system that doesn’t see the “real tragedy.”  And they’ll see the “real tragedy” as the authors want us to see it: as having an autistic child, not as being murdered for being autistic.

Every media portrayal of an autistic person’s murder as sympathetic or justifiable leads to more deaths.  This isn’t hyperbole, it is fact.  Jillian McCabe ran Internet searches for exactly such stories while hatching her plot to throw her six-year-old son, London, off a bridge.  Stephanie Rochester murdered her six month old son Rylan – and then claimed it was because she thought he had autism.

Every media portrayal of an autistic person’s murder as sympathetic or justifiable leads to more deaths – and this media portrayal is particularly well-crafted to encourage parents to sympathize with a parent who turned to murder.

Part II of this book will keep me up at night.  It should keep you up as well.