Building Trust in Autism Research: A Response to Dr. Manuel Casanova

I write extensively on neurodiversity (in) rhetoric, including my most recent publication on neurodiverse approaches to poetics. So when a link to Dr. Manuel Casanova’s “The Neurodiversity Movement: Lack of Trust” popped up on my Facebook feed, a great many of my colleagues assumed – not without reason – that I’d be livid. But ranting gets us nowhere.

Instead, I’d like to take a different approach. Our respective neurotypes notwithstanding, Dr. Casanova and I actually have several things in common. We both hold terminal professional degrees, for instance. We are both affiliated with major research universities. Dr. Casanova and I are also concerned about many of the same things when it comes to autism. We’re both concerned about the implications of “speaking over” autistic individuals, and we both think the question of “who speaks for whom?” is deeply relevant. We’re both concerned about the risks of narrative bias, especially the impact of those risks on what is intended – and believed by the public to be – “objective” scientific research.

Ironically, our shared concerns are exactly those shared by a significant portion of the individuals who make up the neurodiversity movement. In other words, Dr. Casanova actually has extraordinary potential to become a neurodiversity advocate – if he chooses to listen.

1. “Autobiographical Accounts” and Bias

Dr. Casanova opens with the observation that “autobiographical accounts are usually biased.” He’s right.

But scientific accounts may be biased as well. For example, John Duffy and Rebecca Dorner’s “The Pathos of Mindblindness” discusses several scientific articles on “theory of mind,” most notably the works of prominent researcher Dr. Simon Baron-Cohen. Duffy and Dorner’s central argument is that “mindblindness” in autism is not an objective fact. Rather, it is a construct arising from the bias of the researchers who adopt it as a metaphor. They caution that adopting a metaphor to explain autism (or any neurological condition) treads dangerous ground: it is far too easy for a construct to take on the imprimatur of “scientific fact.” This is not “science by press release,” to use Dr. Casanova’s words – but it is science by poetry, with the potential for similar harm.

Duffy and Dorner’s article has the weight of peer-reviewed scholarly publication behind it. But its central argument is not appreciably different from those that appear in personal, “autobiographical” pieces like Mel Baggs’s classic “In My Language,” or even my not-at-all-classic “Writing While Autistic.” Nor is it different from assertions made in more “scientific” peer-reviewed articles, like Markram, Rinaldi, and Markram’s “The Intense World Syndrome – an Alternative Hypothesis for Autism,” or the sea change that has led researchers to give increasingly less credence to Bruno Bettelheim’s “refrigerator mother” theory of autism.

The overarching argument that connects all these pieces is this: Scientists’ accounts can be biased, too. Bias is a human habit, one we cannot always help. We must observe from somewhere, and the view “outside” autism is no more inherently clear-sighted than the view “inside” it, Dr. Casanova’s assertions notwithstanding.

Science is based on observations. All observations are subjective. That a whole lot of consistent observations, stacked together, result in a scientific model or theory does not mean that the observations suddenly become “objective” by reason of their similarities. The observations are still subjective. They all simply point in the same direction.

For many neurodiversity-minded writers, the issue at hand is that our observations of autism point in a different direction from the observations of researchers. This prompts us to point out: “Hey, your observations do not match my observations.”

In fact, many people come to identify with the neurodiversity movement because, in articulating their own observations, they find their observations are shared by other autistic people and are not shared by autism researchers. In other words, the drive to “match” observations that results in the aggregation of people into a “neurodiversity movement” is the same drive to “match” observations that results in the articulation of workable scientific models and theories.

Insofar as Dr. Casanova is concerned about getting the science of autism right, his intuitions about bias are spot-on. Observations are subjective; a lot of observations that point in the same direction become scientifically meaningful. It makes sense, then, for autism researchers to seek out observations – even if their seeds are planted in aggressively “non-scientific” sources.

2. Who Speaks for Whom?

Dr. Casanova writes that “one of the curious struggles within the autism community has been the misrepresentation of opinions of the pro-neurodiversity elite as being representative of those at the bottom.” His concern is that, because the work of neurodiversity advocates is generally verbal – that is, written or spoken – and because autism typically presents with impairments in language, by definition those who can put their communication in words are an “elite,” and not one representative of “those at the bottom.”

Even those of us who write or speak for a living often express considerable difficulty doing so. Some of us who “word” do so only by writing, and some even rely on facilitated communication to make it happen. But one thing most of the neurodiversity movement has in common is a keen awareness of the implications of “passing”.

Indeed, if “passing” is the issue, I daresay Dr. Casanova could learn much about its pitfalls simply by listening to neurodiverse voices. Those of us who write in the field of neurodiversity are aware of the risks.

Another significant concern among neurodiversity types is the silencing of autistic voices. Just as we are concerned about “passing,” we are concerned about who speaks for whom. For example, a great many of the links in the post connect to the work of writers who have expressed an interest in neurodiversity, often urging others to both speak and listen to them, and yet who do not “speak” in words (and who sometimes do not write without support). That is by design. Their words are as valuable as mine, and I am keenly aware of the problem of who speaks for and over whom. (I specialize in it, in fact.)

Dr. Casanova’s post takes “the neurodiversity movement” (which he does not define) to task for “speaking over” nonverbal autistic individuals. In so doing, it fails to recognize two things. One, many nonverbal autistic individuals define themselves as part of “the neurodiversity movement.”  To speak over one group to which these individuals belong on the pretense of speaking for another group to which they belong is silly in the extreme.  Two, if one’s central concern is that autistic individuals will be “spoken over,” then speaking over “speaking” autistic individuals is surely no more defensible than speaking over “nonspeaking” autistic ones. Communication requires both speaking and listening.

3. Not Like My Child

Of those who do write and/or speak within the neurodiversity movement, Dr. Casanova asks “What gives them the right to carry the weight of the autistic community on their shoulders? By claiming that autism is not a pain or a handicap to some do they change medicine? Do they erase the existence of seizures, mood disorders, impaired attention, learning difficulties, or sensory abnormalities in a majority of autistic individuals?”

As in the rest of his piece, Dr. Casanova never identifies who, exactly, he means by “them,” so it’s hard to respond to these allegations exactly. In fact, without a single citation to any neurodiversity-minded writer or piece penned from a neurodiverse perspective, it’s really hard to tell exactly what “neurodiversity movement” Dr. Casanova thinks he’s talking about. But, in the tradition of subjective observation-sharing which builds all human knowledge, I will respond to these questions as best I can.

First, I have yet to hear anyone affiliated with the concept of neurodiversity claim to “carry the weight of the autistic community on their shoulders,” unless Dr. Casanova means our various attempts at self-advocacy or at advocacy for others, such as the #FreeNeli campaign, our calls for justice for autistic individuals murdered by parents and caregivers, or our pleas to be treated as members of the human species rather than as curiosities, pity cases, or monsters.

While I cannot claim any of these as belonging to “the neurodiversity movement” in particular – much less to whatever entity Dr. Casanova’s post presumes “the neurodiversity movement” is – I can say, with confidence, that anything that falls under the rubric of treating autistic people fundamentally as human beings probably qualifies as “neurodiverse” by definition.

So insofar as we are pulling for every autistic person to be seen as a person, regardless of so-called functioning level, perhaps we are “carrying the weight of the autistic community on [our] shoulders.” But we are doing that work because nobody else is.

Does our advocacy on our own behalf “change medicine”? No, of course not. The accretion of data over time and the adjusting of models to accommodate that data changes medicine, as indeed it should change all scientific endeavors. Pointing out that not everything about having autism is terrible does not, in itself, “change medicine.” It creates additional data points – points that might profitably be considered when adjusting the models.

And no, pointing out that sometimes being autistic has benefits does not “erase the existence of seizures, mood disorders, impaired attention, learning difficulties, or sensory abnormalities in a majority of autistic individuals” (a majority that, I feel it relevant to note, includes me). But seizures are not autism. Mood disorders are not autism. Impaired attention is not (always) autism. Learning difficulties are not (always) autism. Sensory abnormalities are not (always) autism.

Many of us “on the spectrum” who struggle with these comorbid conditions would gladly have them reduced or eliminated. Many of us already have found ways to live better, with less impairment from these comorbid conditions, without the need to hate or to cure our autism.

And those of us who have reached this place – the place where we can learn to live better without wishing ourselves not-autistic – tend to recommend it to others, yes. Living with fewer seizures, less anxiety and depression, more focus, better retention and recall, and the ability to navigate difficult environments profitably is “better living” in every sense.

That these improvements have been reached by living patients who are still autistic despite having achieved them is a data point we think might interest autism researchers, and a data point that might help other autistic people live better today. That is why we share it.

4. “Neurodiversity is a reformation against the orthodoxy of medicine.”

I title this subsection with this quote, the topic sentence of the final paragraph of Dr. Casanova’s post, for two reasons.

First, re-opening with this quote allows me to skip the several paragraphs in between the last quoted section and this one. I’m forced to do this because the skipped paragraphs have no substantive or falsifiable argument to counter. They are, to put it in the words of mathematician Wolfgang Pauli, “not even wrong.” Dr. Casanova does not cite a single source for his assertions, and he leaves parties like “the leaders of neurodiversity movement” and “those who literally can’t speak for themselves” woefully un-identified. Where there is no argument, there can be no counterargument. In other words, the skipped paragraphs are a rant, not a position.

Second, I focus on this quote because Dr. Casanova is once again correct. Many writings based in neurodiversity seek to challenge the orthodoxy of autism medicine as it now stands. Insofar as the orthodoxy (literally “right thinking”) of medicine neither accounts for nor reflects the lived experiences of the patients it treats, the orthodoxy risks failing those patients.

As a scientist, Dr. Casanova would be better served to embrace this challenge, not to decry it. First, the challenge itself offers data he may have not possessed before: whether they intend to take a “neurodiverse” perspective or not, the work of researchers and writers across multiple disciplines makes it quite clear that autism research does not currently consider all the relevant variables. Second, if his goal is to help autistic patients, even proceeding with incomplete information – feedback from the few so-called “elite” who can verbalize – is arguably better than proceeding with no information.  Incomplete information can be verified or falsified.  No information cannot.

5. Trust

My own research currently focuses on the various positions and interpretations of the word “speak” in autism discourse. My methodologies differ greatly from those in the sciences, although – based on his citations of Freud and Foucault in this post – it would appear that Dr. Casanova and I are at least somewhat co-conversant as to theories. In short, I specialize in examining how words are used, in what ways, and in what political and social relationships result.

So when Dr. Casanova asserts at the end of his post that “in a team environment decisions may be made primarily by trust and this is what is lacking in the neurodiversity movement,” I cannot help but smile – or grimace. Because once again, Dr. Casanova is right.

When one hears repeatedly that one, in Julia Rodas’s words, “cannot or should not speak,” it is difficult indeed to build trust with the person doing the talking. It is especially difficult to build that trust when one is told not to speak by someone so hell-bent on not listening that he fails to do so much as cite a single actual human being affiliated with the neurodiversity movement in a several-hundred-word blog post about the actions of human beings affiliated with the neurodiversity movement.

In rhetoric, this trust-building is called “ethos.” If one wishes to “build trust in the neurodiversity movement,” one does well to remember that ethos begins with listening.

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Want to Read My Newest Scholarly Article? You Know You Do!

And now you can!

ScholarWorks’s “recommended citation” (clearly not in MLA format):

Ryskamp, Dani Alexis (2014) “Neurodiversity’s Lingua Franca?: The Wild Iris, Autobiography of Red, and the Breakdown of Cognitive Barriers Through Poetic Language,” The Hilltop Review: Vol. 7: Iss. 1, Article 5.

It amuses me that both of my (autistic) reviewers’ responses congratulated me on successfully rehabilitating Savarese’s concept of “neurocosmopolitanism,” which both of them side-eyed pretty hard. I understand why they think it needs rehabilitating. But my goal was never to rehab Savarese’s concept, or even to criticize it particularly. My goal was to anchor my arguments in whatever existing literature I could find in order to demonstrate that I was not in fact “just making it all up.” Which is a legitimate fear for any grad student in the humanities, and a particularly keen one when one’s neuroatypicality and its discontents have led to a lot of criticism in one’s lifetime that one’s brain products are “just made up.” (“To get attention,” perhaps?) Savarese and Chew were, frankly, just about all I could find.

I read both Savarese and Chew as making a good-faith effort to bridge the neurodiversity communication gaps, but either they are entirely neurotypical themselves, or they are setting aside whatever neuroatypicalities they do experience in favor of focusing on how they themselves are not autistic, specifically. Since I’m increasingly convinced we’re all “neuroatypical” in some way (in fact, I’m teaching a class this semester founded on this very conviction), I think the latter is more likely than the former. If so, that strikes me as one hell of a missed opportunity for them both, for reasons I explore in this paper.

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On The Social Uses (and Rules) of Alcohol

We’re all aware how deeply social human use of alcohol is, and also how deeply rule-bound human use of alcohol is.  Every culture that consumes the stuff has rules about who, where, when, how, and why one may or may not do so – and the cultures that don’t consume alcohol also tend to avoid it Because Rules.

Alcohol = social.  Alcohol = rules.  But, in contradiction of the ordinary logic of the syllogism, it turns out that the rules governing alcohol can be deeply social as well.

Consider alcohol control laws in Pennsylvania, where it is unlawful

 to sell, furnish or give any liquor or malted or brewed beverages, … to any person visibly intoxicated, or to any insane person, or to any minor, or to habitual drunkards, or persons of known untempered habits.

(emphasis added)

This is one of U.S. culture’s many codified rules about alcohol.  But to follow it, and thus to enforce it, is a deeply social practice.  How exactly is a bartender to recognize that a patron is in fact a “habitual drunkard” or a person of “known untempered habits”?  In a small town, or if the “habit” includes showing up at this particular bar night after night, this might be a simple matter – but if it is simple, it is simple because of the social knowledge and connection between the bartender and the patron.  In a large city, bars might (and probably do) serve “habitual drunkards” or “persons of known untempered habits” night after night without the social information necessary to realize they’re doing it.  (Which raises the question: who has to “know” about the “known untempered habit” in order to be liable?)

“Insane persons” is a tougher one, because it might have an objective element: one can be declared legally “insane.”  However, few such people carry around their judicial paperwork, and even fewer “insane” people act disoriented all the time.  Once again, the knowledge of the insanity is a social expectation, not an objective one – but here, the vendor doesn’t even get the potential “out” offered by the modified categories of “visibly intoxicated” or “known untempered habits.”  Apparently, one is supposed to know if a particular person is “insane” – whatever that means – without knowing the person at all and without being able to spot signs that the person is not currently in touch with reality.

Rhode Island’s alcohol rules dive into the social relationships even further.  Section 3-11-2 of the state’s General Laws reads:

The husband, wife, parent, child, guardian, or employer of any person who has the habit of drinking intoxicating beverages to excess may give notice, in writing, signed by him or her, to any person requesting him or her not to sell or deliver intoxicating beverage to the person having that habit. If the person, so notified, at any time within twelve (12) months sells or delivers any intoxicating beverage to the person having that habit, or permits that person to loiter on his or her premises, the person giving the notice may in a civil action recover from the person notified any sum as may be assessed as damages; provided, the employer giving the notice shall be injured in his or her person, business or property.

This is an expansion of the “dram shop” principle beyond that contemplated by any other state.  Most states, including Rhode Island, will allow an injured person to sue a vendor (and, in some states, a social host) who provided alcohol to a person who then caused an accident while drunk.  But here, Rhode Island is willing to collapse the injury into the sale itself: if a vendor is “on notice” from a Concerned Relative not to serve someone, the Concerned Relative has a civil claim if the alcohol is served, whether or not Concerned Relative is otherwise injured.

This is a powerful incentive for vendors not to serve people with Concerned Relatives.  To leverage this incentive is an intimately personal and social concern.  It requires the Concerned Relative to know which specific, individual vendors the patron is visiting and to contact them personally, and it requires individual vendors to identify individual “habitual drunkards.”  Chronic alcoholism is no longer a type; it’s a person.

Perhaps, when it comes to something as deeply social and deeply rule-bound as alcohol, the most effective rules will be the ones enforced at intimate, individual levels, like the Rhode Island statute.  But such enforcement becomes increasingly difficult in a highly mobile society composed of nearly half a billion people, most of whom seem convinced that everything – even habitual drunkenness and personal injury – are more matters of “personal opinion” than social concern.

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Updatery

Two new things for interested students and colleagues:

Spring 2015 Syllabus for English 1050.  With updated access policy and a (tentative) schedule of assignments that doesn’t contain all the homework yet.

“Short Papers” Assignment Sheet.  The assignment sheet for that “challenging the normal” project I’ve been vaguebooking for months now.

Substantive content to come.  I’m having interesting thoughts about the social uses of alcohol.  (No, really.)

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Teaching the (Ab)Normal

Image: A tweet from the @ProBirdRights Twitter feed. The text reads “I am feel uncomfortable when we are not about me?”

 

Our first-year writing program requires me to teach four basic genres of writing commonly encountered in college classrooms.  But it has almost no requirements in addition to these, which gives me a lot of flexibility in how I teach the four projects and how I approach the materials.

In past semesters, I’ve usually structured lessons loosely around a central question of rhetoric, like audience or code-switching in language.  This semester, I’m asking a broader question: “What is ‘normal’?”

How do we know what “normal” is?  How do we decide what falls outside the “normal”?  And when we encounter something that is not “normal” for us, what tools can we use to reach out and understand it?

I’m hoping to spend large parts of the semester focusing on one or two longer texts, plus a few shorter texts and activities thrown in.  One of the two will be fiction – Herman Melville’s “Bartleby the Scrivener.”  The other will probably be a non-fiction essay of some kind; I’m considering Duffy & Dorner’s “The Pathos of Mindblindness,” although I’m open to suggestions.

Other materials I’m considering:

(If these seem to have a pretty hefty disability studies focus, well, welcome to my blog.)  ;)

probablyimpossible

My favorite comment about Theory of Mind, ever. OH THE IRONY! Image: A photo of several lines of text from Duffy and Dorner’s article “The Pathos of Mindblindness.” A quote from Simon Baron-Cohen is highlighted. The highlighted text reads “It is probably impossible to imagine what it is like to be mindblind.”

 

I’d also like to have them try a few activities that challenge “normal” perceptions or behaviors, although I want to avoid activities that ask them to pretend to be disabled or that try to mimic a disability.  My goal is to help them understand that “normal for them” is their personal position of power, and at the same time is not an expectation they can or should project onto others.  My problem with “pretend to be disabled” activities is that they can easily give the pretender a false sense that they know what it is for this impairment/disability to be “normal,” when they don’t.

Instead, I’m considering having them try, and then write about, things like:

  • For one week, note all the flashing/strobing lights you see and the situation.  Write about what you wouldn’t be able to do if you couldn’t be in the presence of that light – say if you were epileptic or had photosensitive migraines.  Find out who is in charge of changing/fixing/stopping the light and get them to change/fix/stop it.  (This one I borrowed from Kassianne of Radical Neurodivergence Speaking.)
  • For one week, ride all elevators facing the back instead of the front.  You must take at least one round-trip elevator ride per day during this week.  You must get on the elevator when it arrives – you may not wait for an empty elevator.  (This one I found in the 1986 Girl Scout Cadette and Senior Interest Projects handbook.)
  • For 24 hours, do not use stairs, steps, curbs, or anything that requires you to lift either foot more than three inches from the ground.  You may use ramps, elevators, escalators, and curb cuts.  You may not be late to any class, job, or other scheduled activity.
  • For 24 hours, do not talk.  You may type, write, draw, text, sign, or use any text to speech adaptive app or device.  You may not make mouthnoises of any kind.

I’m always open to ideas.  My goal is to make it clear to them that (a) their personal “normal” has value and interest, and also (b) so does everyone else’s personal “normal.”  That we, as humans, are not balkanized groups of “normal” and “other,” but a multiplicity of “normals,” each of whom can draw power from within our “normal” to share beneficial things with other people and to stand up against being mowed over by other people’s demands for us to conform to their “normal.”

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No, Really, I Love Teaching

The phrase that comes out of my mouth most often during exam week is “no, really, I love teaching.”

give-us-money-we-are-pretty

Those Certain Students, during exam week. (Image: Two light-skinned women wearing dresses stand in a hallway. Each woman holds a sign reading “give us money, we are pretty.”)

I never have to justify my love of teaching at any other time of year – only during the week after regular classes have concluded, final exams are being proctored, and I’m grading a pile of final projects, last-minute extra-credit assignments, exams, and papers some hapless student attempted to turn in long after the “late work” option expired in the hopes that I wouldn’t notice that the personal narrative was actually due ten weeks before.

I love teaching.  I hate exam week.

I hate it not because a handful of students panic, but for the same reason they panic: because, after fourteen weeks of slacking off, they suddenly realize that their opportunity has passed.  That they cannot, no matter what they do, earn the C in this class they require to advance to actual work in their major.  I hate it because, despite my weekly reminder emails since Week 10 to check their grade and come talk to me if it is not where they want it to be, despite my desperate hurling of extra-point opportunities in their general direction, the inevitable student or two in (nearly) every section hasn’t done the work.  And now it is too late.

I hate it because I believe in my students.  I believe every single student who enters my classroom has the ability to pass first-year writing with at least a C.  Most of them have the ability to pass it with an A.  No student has ever disappointed me on this front; that is, I have never had a student who was incapable of passing this class satisfactorily.

Every semester, I believe every one of my students can pass my class.  But every semester, I have one or two who don’t believe they can pass my class.  And so they don’t do the work it takes to pass.  And they fail.  They come a-begging at the last minute for more extra-credit opportunities or a grade change, often with the announcement “I need at least a C in this class!”, as if every one of their classmates didn’t as well.

I hate the begging.  Not because I’m curmudgeonly or resentful, but because the only students who need to beg are those who gave up on themselves.

Fellow 1050 instructors who are more cynical than I say that part of our job teaching first-year writing is to “weed out” the ones who, for whatever reason(s), are not prepared to be in college right now.  To identify the students who don’t believe in themselves sufficiently to pass our class.

sitonurbookokay

Curmudgeonly Professor Cat says “I could be reading your final paper right now.” (Image: A white cat, draped across a laptop keyboard, stares grumpily at the camera.)

Maybe there’s some truth to that.  But it still sucks.

I believe in you, students.  You’re the reason I love teaching.  But you need to believe in you, too.

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Thinking Differently and teaching pedagogy

Dani Alexis:

Adding this text as a placeholder – there’s a lot I want to say (mostly THIIIIS), but not typing on my phone….

Originally posted on The Third Glance:

When I started this blog, the idea was to document how my brain worked, to think about how I thought about, interacted with, and perceived the world. I was working through my discovery of what Autism was and the fact that I was autistic. I wanted to share my newfound understanding with others who might benefit from reading about a different perspective of the world.

I’ve always sort of understood that I thought differently from everyone else. I figured, since I obviously didn’t think like everyone else, that no one else did, exactly, either. To me, this was a logical conclusion. If I was different, then everyone else was too. And if that was the case, then they all had interesting thoughts and stories to tell about how they interacted with the world. This is why I read blogs. I think that everyone has something unique and important to offer…

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