Emotional Labor, Gender, and the Erasure of Autistic Women

Yesterday, I stumbled across a listicle at My Aspergers Child, titled “Married to an Aspie: 25 Tips for Spouses.”  As you might expect from a title containing the word “Aspie” and the improbable number “25,” this list was terrible (and did not, in fact, contain 25 tips).  Emma and I unpacked several of its varied problematic assumptions here; I spoofed it on Field Notes on Allistics here, and The Digital Hyperlexic did some more unpacking here.

What I’d like to do now is to discuss the intersection of gender, assumptions about emotional labor, and the erasure or overlooking of autistic women that results.  This is a topic I’ve discussed more than once on this blog in various ways, although I’ve never quite gotten to the heart of the emotional labor question.

What is emotional labor?

Emotional labor is the work done to organize, remember, prioritize, sort, and structure daily lives and relationships.  In short, it’s the effort put into giving a fuck about other people’s thoughts, needs, and desires.  There’s an excellent introduction to emotional labor and the ways it manifests (as well as ways to do it) at Brute Reason here.

The problem with emotional labor, of course, is that generally speaking it is not considered “work” at all.  Rather, women in particular are expected to provide it “out of the goodness of our hearts.”  Emotional labor is actively cast as not-work by being cast instead as a natural urge women simply have – as if, rather than calling on women to generate effort, we’re actually doing them a favor by foisting the world’s give-a-fuck duties onto them.

In cishet relationships in particular, women are raised to, are generally expected to, and frequently end up doing a disproportionate amount of the emotional labor, as this massive MetaFilter thread on the topic attests.  (The days – literal days – it will take you to read the entire thread are wholly worthwhile.)  We cast emotional labor not only as “women’s work,” but as not even work.  Women who fail to put up with “affirmation, forbearance, consultation, pacifying, guidance, tutorial, weathering abuse,” as Jess Zimmerman sums up emotional labor (at the link in the above paragraph), are not only punished for it socially but are in a sense not considered women at all – and the enforcers of this, as N.I. Nicholson also points out (at the Digital Hyperlexic), are frequently other women.  Certainly, as Nicholson also points out, failing to do the emotional labor “correctly” is cast as social and romantic suicide: “no man will ever want you.”

What does this have to do with autism?

Consider, first, how autism in general and Asperger syndrome in particular are portrayed as deficits in emotional labor, specifically.  The DSM-IV criteria for Asperger Syndrome (which differ from the criteria for autism only in their willingness to allow for a broader range of features in speech development) specifically target certain differences, difficulties, or absences in expected displays of emotional labor:

  • marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction,
  • failure to develop peer relationships appropriate to developmental level,
  • a lack of spontaneous seeking to share enjoyment, interest or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people)
  • lack of social or emotional reciprocity.

The last criteria in this section, “lack of social or emotional reciprocity,” is a demand for emotional labor, full stop.  Emotional reciprocity is the one thing all forms of emotional labor have in common.  The other three are more specific examples of emotional labor: using nonverbals that make the other person feel noticed and attended to, energy invested in “appropriate” relationships, and “sharing” (the ambiguous construction “of interest to other people” in the list of examples, implying “of interest to the patient, pointed out to other people” and “of interest to the other person”, is particularly telling).

It is the lack of “appropriately” displayed emotional labor that leads researchers like Simon Baron-Cohen to cling to the notion of a “theory of mind” deficit in autism and similar developmental disorders.  In In a Different Key: The Story of Autism, authors Donvan and Zucker accuse ASAN founder Ari Ne’eman of “unmistakably” having autism and of possessing no Theory of Mind because, in a conversation with “autism parent” Liz Bell, Ne’eman expressed disagreement with Bell’s position on autism, but did not do the emotional labor of making that disagreement palatable to Bell.

And, of course, “25 Tips for Spouses,” many of which boil down to assumptions that the “Aspie” half of an Aspie-NT marriage is failing to do his (always his, according to “25 Tips”) fair share of the emotional labor, and that this is somehow autism’s fault:

3. Although he genuinely loves his spouse, the Aspie does not know how to show this in a practical way sometimes.
12. Because the Aspie does not have the same relational needs as the NT partner, he may be unable to recognize instinctively or to meet the emotional needs of his partner. Marriages can thus form some dysfunctional relationship patterns.
13. For NTs who had normal expectations of the mutuality of marriage, there may be a sense of betrayal and a feeling of being used and trapped while in a relationship with an Aspie.
15. In the privacy of their relationship, the NT partner may become physically and emotionally drained, working overtime to keep life on track for both of them.

18. NT partners may begin to feel that they are entirely defined by the role they fill for their Aspie partner. There can be a sense that there is little mutuality, equality and justice.
19. NT partners may feel that they are daily sacrificing their own sense of self to help fulfill the priorities of the Aspie partner.
20. NT partners may resent the reality of living on terms dictated by the needs and priorities of the Aspie partner.

Insofar as Asperger syndrome is understood as a deficit of emotional labor, these statements make a certain amount of sense.  But notice how “Aspie” and “man” are perpetually conflated – not only here, but in most dating guides for people with Asperger syndrome (as Emma and I have discussed in previous posts), and in the literature on so-called “Cassandra Syndrome.”  The overwhelming majority of people who claim “Cassandra Syndrome” are non-autistic women married to autistic men, and the fundamental claim is that the man in question has so terribly neglected the emotional labor of the marriage that it has caused actual trauma to the woman.

How Autistic Women Get Lost

Emotional labor is a demand we place primarily on women.  We expect men to do far less emotional labor than women; socially, we tend to punish men who do “too much” emotional labor as excessively “effeminate.”  We expect autistic people to do even less emotional labor – to the point of doing none at all – and we pathologize this lack of emotional labor-doing as both a tragedy and a fault.  Meanwhile, autistic girls and women get lost, both before and after diagnosis.

We know that girls and women don’t get diagnosed with autism as frequently as men and boys.  There have been a spate of articles in recent years on why this might be happening and how to address it.

One answer that has been floated in several circles is that we “miss” autistic girls and women in diagnosis because girls are taught and socialized, from birth, to perform emotional labor.  When the diagnostic criteria for autism spectrum disorder still emphasize deficits in emotional labor, clinicians are looking for lack – not for difference, which is more likely to appear in girls who have been socialized to perform emotional-labor rituals without being given any insight as to their meaning or purpose.

(This, by the way, has nothing to do with whether girls are “innately better” at emotional labor than boys.  It has everything to do with how both girls and boys are raised.  Girls are expected to at least make the effort; boys are not.  Girls, therefore, show up in clinicians’ offices making the effort; boys do not.  While no studies exist yet, I suspect that a study of boys who are raised in households that demand more emotional labor from them also “fly under the radar” of diagnosis more easily than boys who are raised without such demands.)

What of the girls and women who are diagnosed – who are, as I was, probed by clinicans until our difference in emotional labor’s performance becomes apparent?  Well, if you ask the authors of “25 Steps,” we don’t exist – or we don’t marry NTs, or our marriages are never affected by our autism.

(If this last one were true, one would expect a crusade to demand equal emotional labor from boys and men.  Emotional labor “cures” autism!  Except, of course, it does not.)

I’ve written about this question before.  Long story short, autistic girls and women are subjected to the continued demand, attached to our (actual or perceived) gender, to do the emotional labor, no matter what it is, and certainly no matter whether or not we have a developmental disability that specifically lists deficits in emotional labor ability in its diagnostic criteria.  What becomes a convenient scapegoat for men in emotional-labor-lopsided marriages (it’s not him, it’s his autism!) becomes a whiny excuse for women.

This is also why creepy male behavior is excusable with the reasoning “but he might be autistic!,” while curt female behavior is not.  His autism is a reason to pity and excuse his lack of emotional labor; our autism is no excuse to skip out on our expected over-share of the emotional labor.

And this is why there are no “25 Tips” for autistic women married to non-autistic men (like me).  I’m presumed not to need them.  As a woman, I’m presumed to have the (innate or trained) ability to do a disproportionately large share of the emotional labor, to absorb my husband’s disproportionately small share.  (It is also assumed that the shares are lopsided in exactly that way; no one asks how my husband and I have negotiated the emotional labor in our own marriage.)  It is presumed that he will never feel “betrayed,” “used,” or “trapped” by me and my autism, or that he will never need to turn to an Internet listicle for help if he does.  Because I’m a woman, and disproportionate unpaid emotional labor is my birthright.

Thus autistic girls and women get overlooked before diagnosis and erased after it.  Our cultural presumptions about who is able and equipped to do emotional labor make it easy to both diagnose and dismiss autistic men as “just like that,” while blaming and burdening autistic women with “doing it anyway.”  When autistic women don’t “do it anyway,” they’re de-feminized in countless ways.  It’s a lose-lose game.  Crone Island beckons.

AutAc Reads IADK, Part 10: Part X

Part Zero, Part One, Part Two, Part Three, Part Four, Part Five, Part Six, Part Seven, Part Eight, Part Nine

Last section, y’all.

Part X is called “Today,” and it starts on a note I find incongruous.  In previous sections, the authors portrayed people with Asperger Syndrome as sociopaths.  Here, however, we get a biography of Alex Plank, founder of Wrong Planet, that reads like a diagnostic checklist but is clearly intended to make us see Plank as human, even likeable (despite, of course, the autism).  Are we supposed to hate and fear “high-functioning” autistic people or not?

Plank is credited with singlehandedly launching the entire conversation among autistic people on the Internet with the launch of Wrong Planet, which is so inaccurate as to be laughable, and which can be disproven with a single Google search.  The authors also get autistic people’s reasons for congregating online horribly wrong.  They presume we do it because we don’t have to read in-person nonverbal cues, ignoring (or perhaps never-bothering-to-find-out) that autistic people can generally read one another’s body language as well as non-autistic people can read one another.  No; we do it because (a) many of us don’t live near one another, and (b) for many of us, writing is our native language; speaking is secondary.

But I digress.

Despite the focus on Alex Plank, I found this section of Part X refreshing for what I thought was a complete lack of focus on parents.  Then came the final paragraph:

It was the birth of a new philosophy called “neurodiversity,” which was welcomed by many in the autism community.  But at the same time, some autism parents in the community discovered a new adversary in the arena: people with autism themselves.

Neurodiversity, the authors hint, is the misguided brainchild of so-called “high-functioning” autistics who want the lion’s share of the sweet, sweet services pie for themselves.  And it is out to get our noble, beleaguered parents.  SO MEAN.

The SO MEANNESS is credited to the singlehanded work of Jim Sinclair, who apparently launched the neurodiversity movement in its entirety when he gave the 1993 talk on which his now-famous piece “Don’t Mourn for Us” is based.  In it, Donvan and Zucker claim, he attacked parents by explaining that wishing to get rid of the autism is tantamount to wishing to get rid of us – a clear (to the authors) throwback to Bettelheim and therefore unacceptable.

(Ironically, when one Googles “Don’t Mourn for Us,” the first link that appears is to the website of Autism Network International (ANI), which predates Wrong Planet by a number of years.  It’s almost as if Donvan and Zucker could not be arsed, amidst all their other work on this book, to use Google.)

Throughout this section, the authors regularly downplay the credentials of every actually-autistic person they cite.  Jim Sinclair’s background in counseling is not mentioned, but the authors take care to remind us that he “was not a father.”  Michelle Dawson, who has put in over a decade as a research assistant at the Autism Specialized Clinic of Hôpital Rivière-des-Prairies in Canada, is called “a former postal worker.”  Ari Ne’eman’s apparent credentials are limited to having been five years old when Jim Sinclair wrote “Don’t Mourn for Me” and fourteen when he decided to launch ASAN.

Donvan and Zucker, by the way, clearly dislike Ari Ne’eman, which makes me wonder what Ne’eman ever did to them. The Ari Ne’eman presented in In a Different Key can’t do anything right, whether he’s running a nonprofit out of his dorm room or (accurately) depicting cure research as a potential route to eugenic abortion akin to what has happened to a generation of children with Down syndrome.

There are also a number of snide asides like this one, in which Ne’eman has just been asked by a reporter from the Washington Post to comment on the “Ransom Notes” ad campaign:

Ne’eman asked the reporter to hold a moment, placed his phone on mute, punched the air as hard as he could, then returned to the call.  “These ads reflect some very old and damaging stereotypes,” Ne’eman said, sounding like an activist who had been doing this work for years.  (emphasis mine)

Um.  By Donvan and Zucker’s own account, Ne’eman founded ASAN when he was fourteen; this conversation with the Post took place in Ne’eman’s college dorm room.  In other words, he WAS an activist who had been doing this work for years.

Oh, and because Ari Ne’eman was apparently “impervious” to “an autism mom, whose total love for her child and despair over his future should have been evident,” (in other words, “because he does not agree with Donvan and Zucker’s take on autism”), he’s not only autistic but clearly one of those little Asperger’s sociopaths we were introduced to several chapters back.

I would find this charge more infuriating (seeing as I too disagree with the authors), except that it is followed by the amusing charge that Ne’eman is also “mindblind” – that his unwillingness to cave to Liz Bell’s way of thinking in the depicted exchange means he  lacks Theory of Mind.  Of course, our authors’ complete unwillingness to consider what Ne’eman’s reasons might be for that disagreement is not evidence of “mindblindness” at all.

Most of all, the authors are aghast that anyone, pro-neurodiversity or otherwise, could resist the notion of a “cure” for autism.  In so doing, the authors make a common error: they conflate the concept of a “cure” for already-existing autistic people with that of “prevention,” which would keep autistic people from being born in the first place.

Pro-neurodiversity advocates are categorically opposed to any preventive measure that reduces the amount of neurological diversity in the population; it’s right there in the name.  They might not, however, oppose a cure if each autistic person could decide individually whether or not to take it.  Unfortunately, that is not the world we live in, as Donvan and Zucker’s starry-eyed pro-parent approach makes abundantly clear.

The end of Part X tells the story of Donald Triplett’s adult life: his learning to drive, his decision to attend college, his enjoyment of golf.  This ending section comes after an extended meditation by the authors on the elimination of Asperger’s syndrome as a separate diagnosis, a decision they seem to hold in some disdain.

The return to Donald Triplett’s story, then, is profoundly ironic: the authors have spent most of Part X attempting to convince us that anyone who can converse, who can drive a car, who can attend college, is too “high-functioning” to speak about “real” autistic people or to provide any meaningful information to the parents of “real” autistic people.  Donvan and Zucker even stop just short of accusing Ari Ne’eman, personally and professionally, of profiting from co-opting an autistic identity – an identity they have already portrayed him as “unmistakably” having in his own right.  Yet they speak about Donald Triplett with great fondness.  It is as if who “really” has autism is dependent not on the extensive research indicated by the book’s endnotes, but by who Donvan and Zucker personally like.

In A Different Key is a baffling book.  Parts of it will resonate enormously with parents, many of whom continue to feel beleaguered and overwhelmed despite the noises that charities like Autism Speaks make about claiming to have their backs.  Parts of it will resonate with anyone who wants to see Hans Asperger or Ari Ne’eman dragged through the mud.  But parts of it will make no sense to anyone, regardless of audience – because parts of it make no sense in the context of the attempted narrative, no matter how that attempt is organized or described.

This book is, frankly, a mess.  I suspect that early drafts of it – drafts that, I imagine, focused on the pro-parent narrative instead of attempting to address every idea about autism that had entered the mainstream in the previous year – were quite good.  The resulting product, however, reads like a late-night undergraduate panic attack.  There are better books about autism out there; there are even better books about autism parents out there.

AutAc Reads IADK, Part 9: Part IX

Part Zero, Part One, Part Two, Part Three, Part Four, Part Five, Part Six, Part Seven, Part Eight

Part IX is titled “Epidemic.”  The authors ended Part VIII by being laughingly skeptical about the concept of an “epidemic.”

Part IX starts with a chapter on Andrew Wakefield and the manufactured “the MMR vaccine causes autism” controversy.  For several pages, I had great hope for our intrepid authors: they clearly did not buy the idea that the MMR, or thimerosal, or any vaccine ever, actually causes autism – although they never did go so far as to explain what happened to Wakefield when his study was revealed as a fraud and he himself was revealed to have had significant financial incentive to discourage use of the MMR.  The first several pages take the Trix Approach.  Silly parents, vaccines don’t cause autism!

But then, of course, we return inevitably to the book’s refrain: that parents are the real heroes of the autism story, even when those parents are profoundly wrong.  In this case, we get the story of Lyn Redwood’s crusade against vaccines, leading up to her nomination to the Interagency Autism Coordinating Committee (IACC).

And because the point of Donvan and Zucker’s parent narrative is that parents are right no matter how wrong they are, the message that vaccines don’t cause autism and that the entire scare about them was a manufactured controversy is lost.

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Part IX then pivots to a discussion of Autism Speaks.  The authors call our attention, with mild surprise, to the fact that this time it wasn’t parents charging in to fix everydamnthing wrong with the autism world; it was grandparents.  Quelle surprise!

After a quick overview of just how Autism Speaks became the 500-pound gorilla in the room, the authors discuss the merger of Autism Speaks and CAN – and I learned something new, which is that both of CAN’s founders were dead set against that merger.  Nonetheless, it happened.  And so does a page-long summary of Autism Speaks’s acquisition of the controlling share on autism research.  And then, this:

And yet, within a few short years, Autism Speaks’s performance in the area of scientific research would come under question from all sides, and the group would yield leadership position in this realm to others, while Bob Wright’s dream of a “big tent” organization – synchronized, harmonized, and centralized – would be seen sagging dangerously low, pulled down by the weight of too many irreconcilable viewpoints.

And all because Autism Speaks became entangled in the vaccine controversy, where the science on one side didn’t add up, and never had.

From the point of view of an autistic activist, these lines are overstating their case.  Autism Speaks has never stopped being the 500-pound gorilla in the room.  Not when Wakefield was stripped of his medical license, not when Alison Tepper Singer left or founded the ASF, not when SFARI appeared, not when the vaccine courts held it “extremely unlikely” that there was a link between autism and vaccines.  Autism Speaks has always held the microphone; it has always shouted down autistic people.

Incidentally, although Part IX does return eventually to the end of Wakefield’s career, the vaccine courts, and similar events, it never does underscore its implicit message that vaccines don’t cause autism.  Instead, it devotes its usual energy to sympathizing with and lauding the actions of parents, and because the parents in this chapter are generally anti-vaccine, our usual dose of pathos naturally prevents the authors from condemning the whole debacle.  Gold stars.

 

AutAc Reads IADK, Part 8: Part VIII

Part Zero, Part One, Part Two, Part Three, Part Four, Part Five, Part Six, Part Seven

Alternate title: “Rain Man Good, Epidemiology Bad.”

Part VIII of In a Different Key introduced me to a term that is new to me: “autism family,” used to describe autism parents and professionals – in other words, non-autistic people with a dog in the fight.

Finding a new autism-related term is surprising to me, given the amount of time I spend on this particular topic.  I was familiar with “autism parent” and “autism community,” and particularly with their contrast with “autistic parent” and “autistic community.”  But “autism family,” to describe a bunch of people who don’t have autism at all, is a new one for me.

It’s surprising.  I wish I could say it was delightful.

Part VIII of In a Different Key also pronounces 1988’s Rain Man to be “the first good film about autism.”  The authors base this opinion on the amount of thought that went into making Raymond autistic rather than “merely” a savant (the real-life human on which Raymond was originally based, Kim Peek, has savant abilities but is not autistic).  More intention, it’s implied, means a better result.

Certainly, insofar as Rain Man was the first film about an autistic person that did not blame the parents for autism, it was the first “good” film, according to In a Different Key’s persistent criteria for the relatable and good.  Sure.  But, like the rest of the book, Donvan and Zucker’s review of Rain Man contains a few too many unpacked assumptions to be taken entirely seriously.

Worse, although it’s used to set up the introduction of Temple Grandin as “a real-life celebrity with autism,” Rain Man is not used as a contrast to Temple Grandin as a real-life person with autism (much less an autistic person).  Rather, the mode of talking about characters in films is extended to Grandin herself, who is portrayed and discussed more as a character than as an actual person.  If the authors spoke to Grandin herself during the writing of this book, any account of that exchange does not appear in this section on Grandin – which leads me to the strong suspicion that they did not, in fact, interview her.  If not, that fact puts this book’s ethos on even shakier ground still.

(A blurb from Temple Grandin does appear on the book jacket for In a Different Key. It reads, “In a Different Key transports the reader back to the earlier days of autism.  It is essential reading for anyone who is interested in how society treats those who are different.”  I don’t know Dr. Grandin well enough to accurately guess her intent here – we’ve never met – but if I had written this, it’d be dripping shade.)

Slotted into the center of this extended meditation on movie portrayals of autism is a discussion of the first nationwide attempts to calculate the prevalence of autism in the population.  This section offers a solid first attempt at discussing why autism rates appeared to skyrocket in the early 2000s, the incredible difficulty of actually measuring autism rates in the population, and the wildly disparate data sets and approaches various agencies used to get to their numbers.

It also applauds an “autism parent” for getting the CDC to commit to its first rate suggestion, 1 in 166 (since heavily revised).  According to the authors, getting the CDC to announce this number (despite disclaiming it on their website) was essential in getting autism into the eye of the public.  Ironically, the authors then turn around and implicitly condemn media reports using the word “epidemic” to describe that number – even though it represented anywhere from a 273% to a 550% “increase” in autism rates, depending on which state you were in and what methods it was using to guess at the number of autistic children in its population.  (As far as I can discern from the text, no state attempted to guess at the number of autistic adults.)

The further into In a Different Key I get, the more it reads to me as two separate books mashed haphazardly into one.  One of them is a book about the history of parents’ roles in autism – in its diagnosis, treatment, fundraising, and discourse.  This book, on its own, is a rhetorical masterpiece, perfectly suited to its audience and presented with pitch-perfect pathos.  If I were reading only this book, I’d have very little to say about its rhetorical flaws; I’d be spending most of my review analyzing its concurrently intense rhetorical effects.

But that book isn’t the only book here.  The other book, somewhat shorter than the first, is a crabby rebuttal of a collection of haphazard themes: Eric Schopler, Hans Asperger, facilitated communication, movie portrayals of autism.  Without having read the part labeled “neurodiversity” yet I’m going to guess that it’s part of the Crabby Book as well, seeing as how pro-neurodiversity activism is not and has never been the brilliant idea of any “autism parent.”  If I were reading only this book, I’d have very little to say about it.  My entire review would be summed up by this Simpsons still:

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Why this book is two separate books, I have no idea.  If it were a paper turned in by a pair of my students, I’d assumed they had each written their own paper and then mashed the two together, but I’d like to believe Donvan and Zucker, as established media professionals, know better.  The result of this book being two separate books is that neither book is particularly believable.  The rhetorical power of the first is decimated by the second, and if the second has a non-yelling-at-cloud point, it’s obscured by the hyperfocus of the first.  I’m still rooting for this problem to resolve itself.  So far, however, it’s only getting worse.

AutAc Reads IADK, Part 7: Part VII, Part Two

Part Zero, Part One, Part Two, Part Three, Part Four, Part Five, Part Six

If I were asked to sum up In a Different Key in two bullet points, it would be these:

  • mostly for autism parents
  • …with random moments that stray from that focus for no obvious reason.

The first part of Part VII, which focuses on facilitated communication and which I covered in Part Six of this series, falls into the second category.  The second part of Part VII, which discusses parental attempts to fund neurological research on autism, falls into the first category.

The book never attempts to explain what these two sections are doing in the same “Part” of the book, and there is no connection – overt or otherwise – made between them.  The only connection I can find between the FC section of Part VII and the section on the founding of NAAR and CAN is that the son of CAN’s founders, Dov, did have sessions on Rapid Prompting Method (RPM), which is often dismissed as a type of facilitated communication by those who aren’t clear on the differences between the two methods – and that Dov’s parents were overjoyed at the gains in communication Dov made while participating in RPM.  (Dov’s mother, Portia Iversen, has written about this at length.)  Donvan and Zucker, however, never bring this up, and it’s impossible to tell from the book whether they even know it.

The book does try to shoehorn both topics into the same part by quoting Douglas Biklen, a longtime researcher on and proponent of FC, as saying that FC “forced [him] to redefine autism” – and that the  parents who founded NAAR and CAN were trying to do the same thing.  But this connection also reads as forced.  The founders of NAAR and CAN appear to have been motivated less by “redefining autism” as by researching it; certainly the authors never quote them as having “redefining” as their goal.  This attempted connection reads as implausible, at best.

In short, the FC section is dropped seemingly at random in the first half of Part VII, and it has nothing at all to do with this half of Part VII.  So here we are.

The second half of Part VII is another “parents are the real heroes of autism” narrative that characterizes so much of In A Different Key (and which would have made this book a much more powerful, and probably more popular, text if only the authors had managed to stick with it).  We are introduced to Eric and Karen London, who founded the National Alliance for Autism Research (NAAR), and to Jon Shestack and Portia Iversen, who founded Cure Autism Now (CAN).  Both organizations are with us today as the original joint sponsors of IMFAR; CAN merged with Autism Speaks several years ago.

The rest of Part VII is devoted to detailing uncritically the early days of both NAAR and CAN, including their early unwillingness to work together despite clearly doing duplicative work (a stance the authors seem to find more heroic than redundant) and their use of celebrity endorsements to start pushing autism into the national spotlight.  For anyone currently researching autism rhetoric or narrative, this chapter is next to useless as a critical overview of NAAR’s or CAN’s contributions – but at least it provides some useful Google search terms.

Donvan and Zucker are not shy about putting the parents in the spotlight here.  “For getting all this started,” they write, “the credit would always belong to the founders of CAN and NAAR.”  “This” includes “new scientific attention paid to autism,” “getting money to move in that direction,” and “getting young researchers to make understanding autism the focus of their careers.”  It does not include thinking critically about any of these things, of course; that would ruin a good hero story.

Perhaps worst of all, Donvan and Zucker end Part VII by giving us the impression that they are not buying into the burden/tragedy/fear rhetoric that drives so much of current autism discourse.

“For the first time,” they write at the close of Part VII, “a much larger public was learning what autism was about, but in ways that moved their response, in remarkably short order, from curiosity to fear.”  That well-placed but implies that the authors side with curiosity – yet the entire book, insofar as it discusses autism rather than “autism parents,” does so in at arm’s length.  The authors are “curious” in the way you might be to find a nine-foot-long rattlesnake in your basement.  On the one hand, you’ve never seen one that big in the wild before.  On the other hand, you thought you were safe in here.

Make no mistake: the authors are afraid of autism.  Or, at least, they are afraid of humanizing autism – which amounts to the same thing.  The book consistently humanizes only the parents and (some) professionals who work with autistic children.  At an even 400 pages in, we have yet to see the authors treat even one autistic person like a person, no matter how detailed their treatment of the autistic person’s story.

No, Donvan and Zucker buy it too.  They’re afraid.  They don’t want you (autism parent) to think that they are, and they don’t want you to admit you are too.  But they are.  And they think you should be.

 

AutAc Reads IADK, Part 6: Part VII, Part One

Part Zero, Part One, Part Two, Part Three, Part Four, Part Five

When we last left our review, I’d condensed Parts V and VI of In a Different Key into a single blog post, because there really wasn’t  enough material between the two to justify two separate posts.  Part VII is shorter than either Part V or Part VI, yet there is enough disparate material in here to make at least two separate blog posts.  Go figure.

Part VII begins with a couple sections on facilitated communication, or FC.  The version of FC the authors discuss is the most commonly-recognized one, which can be summed up as “one person types with someone else touching them, usually on the wrist, elbow, or shoulder.”

FC is, perhaps, one of the biggest controversies in the autism world.  It continues to spark any number of bitter arguments.  “Is the typist or facilitator the one doing the talking?” is a very specific question, one that has to be answered on a team by team basis.  Donvan and Zucker, of course, tackle this controversial and complex topic with the nuanced discussion and attention to detail it deserves.

Just kidding!  They butcher it.

Their apparent goal is to fall on the “FC is a hoax” side.  But, in this case, their rhetorical approach – of finding an invested parent or other non-autistic professional and encouraging the audience to identify with that person against the “demon” that is autism – ends up shooting their own argument in its foot.

The authors give us the story of Janyce Boynton.  Boynton, at one point, facilitated for a girl named Betsy, who produced a number of accusations of sexual abuse against her family while Boynton facilitated.  The investigation (including a testing procedure developed by Howard Shane) led to the conclusion that Boynton, not Betsy, was doing the typing.  Betsy’s claims – and FC as a whole – were dismissed.

Traditionally, the “Is the typist or facilitator the one doing the talking?” question leads to two possible conclusions.  If the typist is producing the words, FC is considered to be legitimate, and a wonderful resource for people who might have no other access to words.  If the facilitator is producing the words, FC is considered to be a sham, and a sick example of adults who should know better taking advantage of intellectually disabled people (often children).

The “false sexual abuse allegations” controversy surrounding FC falls into this latter category: adults manipulating children to “get back” at parents, or for other nefarious reasons.  That is to say, the false sexual abuse allegations controversy typically falls into the latter category.

By choosing Boynton as their point of view character, however, Donvan and Zucker create a third category: FC as hoax that harms the facilitator.  Boynton is painted as the real victim of the story – not Betsy, nor Betsy’s family.

According to Donvan and Zucker, the person hurt most by facilitated communication is the facilitator proven to be the one typing “Betsy’s” words for her – for the authors never question whether Betsy was proven not to be the one doing the typing.  Nonetheless, the authors don’t blame Boynton for having taken advantage of Betsy.  Rather, they emphasize how very bad Boynton felt about the whole thing, and how facilitated communication – the very thing they claim allowed Boynton to take advantage of an intellectually disabled child! – had ruined both Boynton’s career and her emotional state.

No matter where you stand on the legitimacy of facilitated communication, Donvan and Zucker’s take on it beggars belief.  If the facilitator is doing the typing, the facilitator is taking advantage of the “typist,” full stop. The facilitator is performing an specific, chosen action (typing) and lying about where it is coming from (not me!).  If the facilitator is typing, the facilitator is not the victim.  Yet this is precisely what Donvan and Zucker want us to believe – that Boynton was doing Betsy’s typing, and that Boynton was the victim.

When I brought this up in an autistic working group of which I am a part, one of the group members suggested that perhaps Donvan and Zucker believe that Boynton, so desperately overcome by her wish to see FC work, was typing without being aware of it, in a sort of autohypnotic state.  This suggestion was made somewhat tongue in cheek, and In A Different Key never does explain.  Yet, sadly, it’s the explanation for this section that makes the most sense.

Even more sadly, it’s the explanation that fits best with later attempts to debunk FC that claimed that any physical contact with the typist, no matter how slight, could be used to manipulate the typist’s message.  A fingertip on the shoulder, for instance, could be (and has been!) said to produce reams of sexual abuse allegations or orders of coffee that the typist never intended.  This stance has been taken as reasonable by any number of people in the autism field, so perhaps it is not so far-fetched that the power of FC’s proponents extends to making facilitators as well as typists say things they do not think.

 

AutAc Reads IADK, Part 5: Parts V and VI

Part Zero, Part One, Part Two, Part Three, Part Four

I’m combining my review of Parts V and VI of Donvan and Zucker’s In a Different Key because, frankly, there’s not a lot to say about Part V that hasn’t already been said about the rest of the book.

The focus moves to autism research in England in the mid-twentieth century, which is presented as more humane than research in the United States during the same time period – not because English researchers were refraining from shocking, hitting, or starving their autistic child patients, but because they were looking for a neurological or genetic basis for autism rather than blaming the parents.

Uta Frith and Simon Baron-Cohen make an appearance, but everything done on Theory of Mind since Baron-Cohen, Frith, and Leslie’s 30-year-old paper on the topic is disposed of in a single clause: “The validity of the ‘Theory of Mind’ theory of autism would be debated for years….”  Okay, but given that ToM has been and remains one of the biggest theoretical battlegrounds in autism, maybe don’t dismiss it in fifteen words?

Part VI introduces us to Lorna Wing, who despite her long-running career and fond remembrance by at least a few actually autistic people, is presented to us as a crusading “autism mother,” not an accomplished researcher.  Without a trace of self-awareness, the authors also lament the difficulties Wing faced in being taken seriously as a psychiatrist studying autism, given that she was (a) a woman, (2) a mother, and (iii) a mother of an autistic child.

Through the introduction of Wing, we’re also, finally, introduced to Hans Asperger.  Steve Silberman’s history of Asperger’s work in Neurotribes is so much more detailed, researched, and nuanced that it’s not even worth reading the same topic in In a Different Key – except perhaps to marvel at how Donvan and Zucker persist in awarding the “discovery” of autism to Leo Kanner in spite of Silberman’s clear evidence to the contrary.

However, there is one moment in the section on Asperger and his work that is absolutely rage-inducing.  Describing how Asperger frequently found his patients to be bullied while at school, Donvan and Zucker manage to blame the children for their own bullying – by painting them as sociopaths.  In a single paragraph, the authors describe Asperger’s patients (who were all autistic) with terms like “unruly,” “alienation,” “malevolent,” “combative,” and “inveterate liar.”  In the very next paragraph, they write, “This sorry cycle of antisocial tendencies…grew out of specific traits Asperger ascribed to the boys.”

In other words, kids with “classical” autism are tragedies and burdens to their parents; kids with “Asperger’s syndrome” are little sociopaths.

The final section of Part V is devoted entirely to the lurid – and, the authors indicate, ultimately unanswerable – question of whether Hans Asperger was a Nazi or a Nazi sympathizer.  It’s difficult to determine what this chapter is doing in the book at all.  It has nothing to do with the book’s heroes, who are “autism parents,” or the book’s audience, who are also “autism parents.”  Either it exists to connect the Asperger syndrome diagnosis, specifically, to Nazism (why?), or it exists to connect autism as a whole to Nazism, as if Donvan and Zucker have not given us enough reasons to dislike, mistrust, and fear their version of “autism” already.

Apart from the oddly-placed Nazi chapter, however, not much has changed.  The real victims of autism, according to In a Different Key, are still the parents.  The real heroes of “the story of autism” are still the parents as well.  When no clear parental sympathies can be evoked, the storytelling falls flat or is skimmed over altogether.  No autistic person has yet made an appearance as an actual human being with feelings, intentions, or motivation.  It would be more appropriately subtitled The Story of Autism Parents – which might actually have produced a better book in terms of focus.