Radio Silence: More on the Ethics of Pay and Publication in Disability Writing

A couple times a month, I get unsolicited* correspondence from someone who wants one of two things:

  • for me to guest post on their blog or Web site, or
  • to republish something I’ve already posted here on their blog or Web site.

I have never responded to these requests, but not because I have any policy against responding to cold calls.  Rather, I have never responded to any of them because every single one has left out a vital component: compensation.

Sometimes they fail to mention compensation altogether.  More often, they offer me “exposure” instead.

I’ve written before about the serious ethical problem involved in not paying writers, particularly when those writers are disabled and particularly when the non-paying outlet claims to champion disability-related causes.  At that second link, I specifically addressed problems with The Mighty’s model of soliciting unpaid labor from disabled writers, making money on ad revenues generated from that content and from investors using the site’s presence and reach supported by that content, and offering to donate any writer’s compensation to charity rather than simply paying the writer.

This was enough for me to speak up against The Mighty.  But The Mighty, at least, stops at asking for free labor.  The Mighty does not, as far as I know, go around copying other writers’ work without their knowledge or permission, posting that work to its own site, and making money off it.

Some outlets do.

Late last night, I got a Facebook message from a friend asking whether I had ever given permission to an Australian site called My Disability Matters or its adminstrator, Dale Reardon, to republish any of my work.

The answer is no.  Except for a handful of outlets I personally selected and approached about guest posting or sharing content, including Misandry Angie and The Ed Wiley Autism Acceptance Lending Library, I’ve never authorized anyone to republish my work.  When I do reach out to others about republishing my work, I choose them carefully: either these platforms can afford to pay me, or they understand that I’m offering them something of value, and they’re willing to offer their professional assistance in return.

The name of the site, its admin, and the fact that it was based in Australia caught my attention, though.  It did all sound familiar.  So I went looking in my messages.

Turns out Dale Reardon did contact me about publishing on My Disability Matters, by leaving a comment on my March 2016 post on eye contact.  In it, he states that he “was wondering if it might be okay to republish this article and any other relevant ones on our website, with appropriate credit and a link back of course.”  In exchange, I would get the site’s “help [to] spread your work and gain a wider audience for you.”

In other words, exposure.  In other words, nothing.**

Not only did I not respond to this comment, I never let it out of the moderation queue.  I view all requests for my unpaid labor as demands for unpaid emotional labor, so I treat them exactly the same way I treat all other demands for emotional labor I deem unreasonable: I ignore them.

I never said yes or anything that could have been reasonably understood to be a yes.  To put it in contract-law terms, Mr. Reardon made an offer; I did not accept; there was no meeting of the minds, and thus no deal to put my work on My Disability Matters.

Usually, when I don’t respond to unsolicited demands for my unpaid labor, that’s the end of it.  Most people understand that radio silence is a “no,” not a “yes.”

So imagine my surprise when, after my friend’s query, I searched the My Disability Matters site to find that well over half of my piece on identity-first versus person-first language had been excerpted there [pdf], either the same day or the day after I had posted it here.

My Disability Matters makes money off the work it publishes, as is explained on its About page.  The About page does mention a long-term goal of employing disabled people (other than the site’s founder, one presumes) and of reinvesting some of the profits back into the disability community.

It does not, however, mention paying writers.

In other words, the site was using work I had not given permission to be used, and keeping the money it generated, without ever mentioning to me either that my work was being used or that the site intended to keep the money my work generated.

Oh, and it got the name of this blog wrong.

My search for “autistic academic” on the My Disability Matters site turned up two entries.  One was for the aforementioned post.  The other was for a listing on the site map.

The site map, as it turned out, lists every “source” of the site’s articles, including several dozen I recognized – and several that are written by people whom I know share my (dim) view of exploiting writers in general and disabled writers in particular.  When I asked the ones I know personally about their involvement in or knowledge of My Disability Matters, they were as baffled as I was when my friend first asked me last night.

In other words, it’s not just me.  My Disability Matters is exploiting several of us.

I’ve written before, in my comments on The Mighty***, how traditional excuses like “but startup costs!” or “but business model!” don’t fly as reasons not to pay writers.  I’ve been a freelance writer for nearly a decade now.  I’m currently the Legal Coordinator at Autonomous Press and the editor of the forthcoming anthology Spoon Knife 2: Test Chamber from NeuroQueer Books – an anthology series that pays its writers.

I understand the costs of the writing and publishing professions.  I face those costs every time I try to publish my own work, every time I negotiate with my clients to be paid what my own work is worth, and every time I negotiate with potential AutPress writers to ensure we pay them what their work is worth.  I started blogging for pay back when Merriam-Webster was still debating whether “blog” should be added to their dictionary.  I’m a partner in a company that has compensated every one of its writers to date (with cash, copies of anthologies, or both).  “But startup!” is never an excuse for not compensating writers – at the very least, with a share of the ad revenue generated by their work.

And even if it was, it’s no excuse to copy-paste substantial portions of their writing onto your own site without their knowledge or permission in order to generate that ad revenue.

This is exploitation of disabled writers, and it needs to stop.  We get exploited enough by the rest of the world.  Don’t do it to one another.


*by definition, because I don’t solicit them

 

**The rule of thumb for measuring the value of “exposure” is this:  Any site with a sufficently high profile to offer you worthwhile exposure can afford to pay you.  That kind of high profile is worth money.  If The Huffington Post were to go up for sale tomorrow, its price tag would be in the millions, and a substantial chunk of that price would be based on its name recognition alone.

If the site claims they can’t afford to pay you?  They’re not big enough to give you worthwhile exposure.  You can get the same exposure by hustling your own brand.

That is, if you care about exposure at all.  What every one of these unsolicted requests for my unpaid labor has failed to understand is that I don’t.  I’m a professional writer.  Have been for years.  I’m exposed.  Offering me “exposure” instead of pay just tells me you haven’t bothered to learn who you’re talking to.

 

***published three months before Dale Reardon first contacted me, so it’s not like he didn’t have an opportunity to understand my position

Autistics Speaking Day 2016: Love’s Austere and Lonely Offices

Sundays too my father got up early
and put his clothes on in the blueblack cold,
then with cracked hands that ached
from labor in the weekday weather made
banked fires blaze. No one ever thanked him.

I’d wake and hear the cold splintering, breaking.
When the rooms were warm, he’d call,
and slowly I would rise and dress,
Speaking indifferently to him,

who had driven out the cold
and polished my good shoes as well.
What did I know, what did I know
of love’s austere and lonely offices?

– “Those Winter Sundays,” Robert Hayden
I woke up at 4:45 a.m. to the sound of my cat having what is either an epileptic seizure or a transient ischemic attack, and ever since then, I have had no intention of writing for Autistics Speaking Day today.  My day seemed to have nothing whatsoever to do with the annual festival of Autistic people speaking for ourselves, a festival founded in direct response to the theories and rhetoric that insist that to be unable to speak for oneself is autism.

But then.  I’m autistic; this is my day; why not speak?  Sufficient unto each day is the relevance thereof, and all that.

Speaking isn’t the only thing Autistic people are accused of being incapable of doing.  Love is another. In her 2015 speech to the Vatican, Autism Speaks founder Suzanne Wright continued to play on this stereotype, claiming that “expressions of love…can be so difficult” for autistic people.  At Diary of a Mom, Jess Wilson has written extensively about how clinicians told her that her autistic daughter Brooke would never display love, make friends, or form affectionate attachments.

It’s not merely that it’s a stereotype, and a harmful one at that – it’s that people think it has an actual basis in reality to the point that there’s an actual syndrome NT people supposedly get based on this “truth.”  Not only do we fail to love, the claim goes, we fail at it so hard that we actually cause traumatic stress disorders in “normal” people.

We don’t love other humans, the story goes.  Sometimes, maybe, we love objects or animals – usually cats.  But if we do, our love becomes a source of curiosity or spectacle, as when this autistic man remodeled the interior of his house for the comfort and joy of his cats.

Loving a cat over the past week has made me spend a great deal of time thinking about what, exactly, love is.

Love is repeating “it’s okay, shh, it’s okay, it’s okay” at 4:45 a.m. as she convulses uncontrollably, her pupils dilated and her fur soaked with urine, terrified of what her own body is doing against her will or desire.

Love is sitting up with her even though you’ve only slept four hours yourself, so that she isn’t in the dark alone.

Love is listening to an emergency veterinarian tell you that she has severe immune-mediated hemolytic anemia, that it’s amazing she did not go into shock and die in the car on the way to the hospital.  Love is holding back your tears until you’re in the car, lest she see you cry.

Love is cleaning up pee for the third time today.  Love is running two extra loads of laundry just to clean the blankets.  Love is having an intense sensory aversion to stickiness, damp fur, and cat pee smell, and pushing it away because she needs to be picked up and moved somewhere safe right now.  Love is postponing your fourth change of clothes for the day long enough to take the vet’s phone call.

Love is learning to count platelets.

Love is running to the vet’s office twice and the pharmacy three times so that she can take all her meds as conveniently as possible.

Love is opening five different cans of cat food just to find the one flavor she’ll eat today.  Love is scooping poop out of her box like it’s buried treasure.

Love is carrying your other cat around in your arms as you try to make your breakfast and answer an urgent email, because he doesn’t know what is wrong in the house, he only knows something is, and he’s scared.

Love is composing professional emails to people who feel the best way to get you on their side in a business dispute is to question your basic competency as an adult as you sit in the vet’s office waiting to hear whether the blood tests say it is time to let her go.

Love is prying open her jaw despite her growling, because she needs her meds more than you need her to like you.

Love is buying a new blanket for your bed because the old one is officially Hers now.

Love is every attack maybe being the last one.

Love is everything you do so that if you do wake up tomorrow to find her gone, you will have to grieve but you won’t have to do it with the regret that you could have loved her harder and you didn’t.  Love is knowing you’ll feel that regret no matter what you do today.

Love is a verb.  It’s a thing we do, fiercely, and without reservation, when it is the hardest thing in the world, because the loving is worth it.  Yet it is a thing autistic people are told we cannot do, that we do not do, that we are harming the rest of you by not doing.

Right now, I can’t find that bloviating relevant.

Right now, I have someone who needs my love.

The US Book Is Out and I Wrote the Afterword

Autonomous Press* just released its first two single-author poetry books: Adrift in a Sea of M&Ms, by Marcel Price (aka Fable the Poet), and Teaching Languagings to Nonverbal Thinkers: The US Bookby Michael Scott Monje Jr.

I’m going to do something I have never done before and endorse Adrift in a Sea of M&Ms even though my copy has not even arrived yet.  I’m going to do this because Michael edited it, and I’ve read The US Book more times than just about anyone.  Also because I’ve been Facebook friends with Marcel Price for long enough now to determine that clicking “Friend” was a sound life choice.  (Tbh, that took about fifteen seconds to decide.)

I am also going to endorse the crap out of The US Book, which I know very well indeed.  A few of the poems in it were what convinced me to ask Michael to chair my MA thesis.  A few others got handed to me in draft form for feedback before the book came out.  And, oh yeah, I wrote the Afterword.  Which Michael let stand even though it contains at least one terrible pun.

us-book_ebookcover

Here is an incomplete and non-representative list of people who will enjoy The US Book:

  • Teachers of language
  • Users of languages
  • Listeners-to of other people who use language
  • Hip-hop fans
  • Poetry fans
  • Survivors of the sorts of childhoods about which scathing tell-all memoirs are written
  • Current endurers of the sorts of childhoods about which scathing tell-all memoirs are written
  • Hamilton fans
  • People who thought Hamilton was fine and all but it didn’t go far enough
  • People who want to be activists but don’t know how to get that angry
  • People who are already activists and need to breathe in now and then
  • Very small rocks
  • Hyper-intelligent cyborgs
  • Hypo-intelligent cyborgs
  • That Guy in Your MFA
  • People with other people inside their heads
  • People who can recite entire episodes of Battlestar Galactica
  • Garak
  • You, probably

The US Book is poetry, and also hip-hop.  It’s academic analysis, but also memoir.  It’s a parliament of owls and also a sci-fi con.  It will change the way you think.  Screw the bleeding edge of English studies; this book will put you on the godsdamned event horizon.  This book does not care that an “event horizon” is a mathematical construct and not an actual place.  This book can take you there.

Oh, and the Afterword is pretty good too.


*Full disclosure: I’m the AutPress partner who enjoys ignoring requests for contributor bios.

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.