Building Trust in Autism Research: A Response to Dr. Manuel Casanova Posted on 20 January 2015 by Dani Alexis

The following is another blog with a different perspective on the neurodiversity movement. It was written in by Dani Alexis in response to one of my blogs (http://bit.ly/1Anrlex). Dani is a graduate student (MA in English), former attorney, and teacher of English who likes to discuss writing, rhetoric, law and literature.

I would like to recommend taking into consideration that Dani’s blog offers a snap shot in time of an ongoing process. It does not take into account the prologue to my blog (http://bit.ly/1AqaYjQ) nor the multiple writings that transpired immediately afterwards. I think dialogue is essential and in this regard I express my appreciation to Dani Alexis for sharing her thoughts in a constructive manner. I only stand to learn form her comments and those of others.

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

by Dani Alexis (see http://bit.ly/15xUxrF)

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.

7 responses to “Building Trust in Autism Research: A Response to Dr. Manuel Casanova Posted on 20 January 2015 by Dani Alexis

  1. Well, this is a long one, and I don’t have a long attention span, so we will see where this goes. BTW I wrote this one (https://corticalchauvinism.com/2015/01/14/visualizing-neurodiversity-breathing-for-treatment/). The fact that you were an attorney just shows that you are, from your perspective, more verbally accomplished than me.

    I agree that also scientific studies are not 100% accurate. The treatment I proposed for myself in my own essay is kind of a risk because it’s the result of two sources, but one I’m willing to take.

    In my opinion, “neurodiversity” doesn’t mean simply treating people on the spectrum like human beings. It also assumes that they all have special talents and can function in daily life and hold down a good job. Using that logic, every condition in existence, good or bad, would be considered a form of “diversity”

    Finally, you say autism can be just the “good traits” without the “bad traits”. This depends on a case-by-case basis in my opinion. Sometimes, the bad traits outweigh the good traits. Other times, the good traits outweigh the bad traits. I’m sure that in your case, you aren’t suffering that badly to the point where you are desperate to be cured.

    Good and bad traits can also be linked. Again, it’s up to the person’s reasonable decision to determine what to do.

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  2. I have read this–and other related blogs on neurodiversity–with great interest. My son has classic autism (read: language and all communication significantly impacted) and is 9 years old.

    I have to say, I am deeply offended by the inference that no one else cares if autistic individuals are treated as human beings. [I refer to your quote: 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.]

    Fortunately, we are blessed to know many therapists, advocates, teachers and parents who have devoted their very lives to EXACTLY that cause. I am sorry you were left out in the cold to fend for yourself, and have not been heard…despite your tremendous ability to express.

    I am not as profound nor poetic as you; I lean toward the material and physical. So please excuse my clumsy analogy. But, it seems akin to someone who has lost a thumb speaking for the quadraplegic who depends on mechanical aids for bodily functions. The person missing a thumb must relearn how to put on a wristwatch; which is meaningless to the quadriplegic.

    Must we really fight about this? The needs–and opinions–within the ASD community are vast and varied. Must we alienate one another? Isn’t there room for everyone — knowing that, in general, we humans are limited, and subjective? Aren’t even “good” and “bad” traits subjective? Though he cannot communicate it verbally, I’m absolutely certain my son would love to fly (he watches base-jumping, parachuting and high-diving on YouTube), but I prevent him from leaping off the balcony.

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    • I agree we shouldn’t fight. When I was pro-ND, I fought because I felt left out. When I realized being ND wasn’t all that great, I argued with the ND militants out of frustration.

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  3. Let me address a few of your points.

    I think anyone who is informed enough to have an opinion about neurodiversity,pro or con,does not need to define what it is.I would compare neurodiversity to something like White Supremacism,we all know what this is,and we do not need to define it to every time speak out about it.

    Much of what people do not like about those who advocate neurodiversity is that those who advocate it come across as arrogant.The way they present themselves and neurodiversity leads many to believe neurodiversity advocates believe their HFA diagnosis somehow makes them superior to the rest of the world.Most neurodiversity advocates seem to be completely lacking in either humility,or the ability to accept others have had life experiences so different from theirs,that they will never have the same beliefs.The old saying about catching flies with honey applies here.I do think these problems are due in large part to the features of Aspergers and HFA.I do not know if there is any way we can change this,but this need to be pointed out if we are to have any real debate.

    I have yet to hear anyone with a very public voice,who advocates neurodiversity make the clarification that when they are talking about neurodiversity,they are just talking about self advocacy,solely for themselves,or other very high functioning individuals.I think if those who advocate neurodiversity were to make this point,and restate it over and over again,it would lead to much better understanding of where we are in this debate.

    The famous line from “Cool Hand Luke” about failure to communicate comes to mind here.If thereare any individuals I could point to that most personifies this problem,and this perceived arrogance and superiority,it would be Ari Ne’eman,and his group ASAN.

    Those who advocate neurodiversity,have built their movement around a very narrow picture of what autism is,a model that seems set in stone,and every bit as outdated as the “refrigerator mother” model.A model that Swedish researcher Christopher Gillberg refers to as “autism pure”,but one that only encompasses a small percentage of those on the spectrum.

    http://www.ncbi.nlm.nih.gov/pubmed/24958434
    http://www.hindawi.com/journals/tswj/2013/213979/

    Dr. Gillberg suggests we adopt a two,or more,tiered system of diagnosing and recognizing autism.One of “autism pure” and “autism plus”.The latter would recognize ADHD,intellectual disability,mood disorders,vision and hearing defects,seizures,and the like as key features of ASD.The ones that Professor speaks of when he mentions those who cannot speak for themselves,would be those on the “autism plus” side,whose comorbidities include profound intellectual disabilities.

    As I have said many times,I have multiple diagnoses,of which autism is only one,and maybe not even a major one.I am getting very close to a mitochondrial disease diagnosis,One diagnosis I have is Cerebral Folate Deficiency.A diagnosis that did not exist until a decade ago,and one that no test existed for until five years ago,although I have lived with this condition my entire life.I am in my 50s.Systemic folate deficiency causes many serious medical issues,such as polyneuropathy,megaloblastic anemia,heart problems,and secondary immune deficiency.I have all these and more.

    But the funny thing is.once you start treating the CFD,not only do the medical problems improve,but the autism gets less severe.Stay on your meds,and avoid dairy long enough,the autism eventually goes away,and you become neurotypical,but go off the regimen,and the autism comes right back.Please read the articles by Richard Frye from Arkansas Childrens Hospital and Vincent Ramaekers of the university hospital,in Liege,Belgium.

    And CFD is not the only disorder where there is a systemic relation to autism and medical problems.There are also autoimmune disoders,like PANDAS and PANS.Where parents offer dramatic testimony of how treating the child’s underlying autoimmune disorders reverses the child’s autism.Susan Swedo of NIH has been at the forefront of this for years.

    Those who believe in neurodiversity are clearly afraid to confront the reality that what we diagnose as autism is often NOT a stand alone condition,independent of comorbid conditions.The body does not work that way.It is a complex network of many interdependent systems,the brain being dependent on them all.These are conditions that are to serious to treat by oneself,without the help of a very specialized doctor.

    Professor Casanova may not offer proof of how neurodiversity is in conflict with medical science,but I offer these conditions as proof of how it does conflict.The science on all this is very new,and is still unfolding.As Thomas Insel of NIMH stated at the latest IACC meeting,the science is coming in so fast and furious researchers and clinicians have a hard time keeping up.

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  4. In the first place we can say that the original Neurodiversity theory is a by-product of the failure of some mental health professionals in the United States to successfully discriminate between classic, real autism and other seemingly related disorders – as “Asperger Syndrome,” for example. It might give the Movement a great impulse to concentrate instead on completely eradicating Asperger’s Syndrome – erasing it by the roots – out of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), for its diagnosis has degenerated in recent years into a bizarre mix of the absurd and the ghastly.

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