Showing posts with label autist. Show all posts
Showing posts with label autist. Show all posts

See it Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor: A Review

Maxfield Sparrow
unstrangemind.com

[image: cover of the book See It
Feelingly, by Ralph Savarese]
See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor (Thought in the Act) by Ralph James Savarese
Foreword by Stephen Kuusisto
Duke University Press Books (October 12, 2018)

Reading See it Feelingly took me much longer than I expected, because I wanted to stop to take notes with almost every page turn. Dr. Savarese has produced a masterpiece, simultaneously dense and accessible. His voice moves freely—alternating among lyrical, narrative, and instructive—never losing the flow, never dipping into pedantry, never soaring too far toward the abstract for the reader to follow. Not only is this collection of essays brimming with the most important information and ideas about autism, it is a collaboration of rare beauty.

See it Feelingly crosses genres effortlessly. The result is a book rich in the neuroscience of autism, literary criticism, Autistic poetry, the science and politics of neurodiversity, theory and practice of inclusive education, and direct quotes from Autists. See it Feelingly also belongs on my virtual bookshelf of Autistic Poetics*, along with Autistic Disturbances: Theorizing Autistic Poetics from the DSM to Robinson Crusoe, by Julia M. Rodas, and Authoring Autism: On Rhetoric and Neurological Queerness, by Melanie Yergeau. While Savarese, unlike Rodas and Yergeau, is not Autistic, his work that has culminated in See it Feelingly has given him great depth of insight into Autistic poetics. More importantly, his understanding of Autistic poetics is directly informed by the extensive conversations and feedback from his Autistic friends with whom he explores literary works.

There are six Autistic co-readers highlighted in See it Feelingly. Dr. Savarese makes it clear that he considers the relationships between his Autistic friends and himself to be more about shared journeys as equals than a hierarchical teacher-student relationship. One reason for this attitude was that his Autistic friends were teaching him as much, if not more than, he was teaching them. And they weren’t the stereotypically expected sort of lessons about autism and Autistics. Rather, his co-readers were teaching him new ways of engaging with the text—Autistic ways of reading. As Savarese writes on page 54,
“What literature professors call 'close reading' might as well be called 'autistic reading,' I decided, for the kind of careful attention and full-bodied engagement that Tito evinced are exactly what literature deserves.”
Savarese returns often to the theme of embodiment in writing and reading—“feelingly seeing” the text. He shows the deeply somatic (body/sensory as opposed to mind-based) nature of Autistic experience by weaving together three information strands: conversations in which various of his six co-readers share experiences of how they interact with the texts they are reading and discussing; explanations of some of the differences in brain structures and functions that cause Autistic people to engage somatic regions of our brains more actively and with more connections than non-autistic people; and a review of somatic theories in linguistics and poetics, suggesting that the sounds of language evolved as echoes of body movements. “Metric feet” in poetry echo the way language echoes the footfalls of running.

The six Autistic people Dr. Savarese explored literature with were: his son, DJ Savarese; Tito Rajarshi Mukhopadhyay; Jamie Burke; Dora Raymaker; Eugenie; and Temple Grandin. As Savarese notes in the introduction, what he has done is not a scientific study or even a random sample. The people he worked with were the people he knew one way or another. Or, as in Grandin’s case, people both famous and somewhat accessible. The choice to include Grandin also stemmed from the irresistible challenge of re-visiting Dr. Oliver Sacks’ assessment of Grandin’s assumed deficit with respect to literature in his book, An Anthropologist on Mars.

Dr. Savarese chose the books he read with each of his friends. The chapter about reading with his son is labeled prologue rather than chapter one. I think that choice is meant to show how DJ wasn’t just another Autistic to read with but The Autistic who taught Dr. Savarese his first lessons in full-autistic-body reading, re-living personal trauma while reading fictional trauma, close-autistic-reading, and the importance of building a raft of safety upon which to navigate the often treacherous waters of literature. Savarese focused mainly on a shared reading of Mark Twain’s Huckleberry Finn. In chapter one, Savarese immersed in a slow—two chapters at a time—reading of Herman Melville’s classic, Moby Dick, with Mukhopadhyay. In chapter two, Savarese and Burke explore a classic Native American novel that plays with concepts of time, space, and ritual: Ceremony by Leslie Marmon Silko.

Chapter three spends a lot of time exploring the connections between the science fiction genre and autism, drawing heavily on Steve Silberman’s autism history, NeuroTribes. Savarese chose the novel before the reading partner in the case of Philip K. Dick’s Do Androids Dream of Electric Sheep?. After exploring the parallels between Vulcans (Spock) and androids (Data) and Autistics (as well as dipping into the reasons so many Autistics love Star Trek), Savarese knew he wanted to discuss Dick’s novel about a bounty hunter searching for renegade replicants with an Autistic reader. He chose Raymaker because he had been impressed by things she had said in the documentary film Loving Lampposts, Living Autistic. Blade Runner was one of her favorite movies but she had not yet read the book upon which it was based.

In chapter four Dr. Savarese reads with a woman who chooses to go only by the name Eugenie. She is Autistic, Deaf, a classical ballerina and a figure skating choreographer. She already faces so many barriers as a multi-racial, Jewish, Deaf choreographer that she does what she can to keep her autism undercover, fearing it would tip the balance for too many people, rendering her unhirable. Together, they read The Heart is a Lonely Hunter by Carson McCullers. Savarese chose that novel as a fertile ground for exploring intersectionality—the synergy that happens when someone has more than one minority identity—in Eugenie’s case, the intersection of being multi-racial and multiply-disabled.

Finally, in chapter five,  Dr. Savarese successfully deconstructs Dr. Sacks’ earlier assessment of Grandin during a shared reading of two short stories from the anthology Among Animals: The Lives of Animals and Humans in Contemporary Short Fiction: “Meat” and “The Ecstatic Cry.” Citing much of what has been said by and about Grandin to support the notion that she is purely logical with only the simplest emotions—he quotes Grandin on page 157, saying, “ [I] only understand . . . fear, anger, happiness, and sadness”—Savarese set out to explore Grandin’s actual emotional landscape through discussing literature together.

While Grandin’s initial response to “Meat” was frustration that the story never revealed what species of animal was described, I shed genuine tears reading just one excerpted paragraph Savarese included. Still, Savarese found great depth of reflection and insight in Grandin’s approach to the texts. Her literary reality was much richer than Savarese, or I, had been led to believe. When Savarese asked Grandin on page 171 if “Meat” had moved her, she replied, “Well, I don’t get overly emotional [...] [b]ut the words created images in my head, and they moved me.” But Savarese was most insightful halfway through his recounting of their discussion of “The Ecstatic Cry” when he suddenly realized that he was trying to box Grandin up and force her into a mold every bit as much as he felt Sacks had done. Savarese writes, “Can we presume competence without striving for normalcy? I think so, but in my quest to uncover emotion, I was certainly muddying the waters.” (182)

In the epilogue, Dr. Savarese revisits theories of literature and reading but soon turns to pondering our future, based on the current grim political landscape in the U.S. He closes with a quote from Azar Nafisi, an Iranian professor, explaining that literature does not, “merely reflect reality but reveal a spectrum of truths, thus intrinsically going against the grain of totalitarian mindsets.” (195)  Echoing her language, Savarese calls upon “a spectrum of readerly minds” to “stretch and amplify” the spectrum of truths. Now, more than ever, the world needs literature. And Dr. Savarese has amply demonstrated how much literature needs Autistics.

See it Feelingly is a manifesto of power, singing out the value and beauty of Autistic minds and lives. It centers non-speaking Autistics while expressing acceptance and inclusion for all flavors of Autists. It does not position our worth in the commercial sense we’re so accustomed to. Some of the co-readers have successful careers; others may never support themselves through labor and earned income. That is not where any of their value as human beings resides and Savarese makes that abundantly clear as he invites us to savor the inner lives of his friends. Literature is about what makes us human and Dr. Savarese and his friends find the humanity in fictional humans … and whales and penguins … by looking into the mirror of literature and seeing themselves reflected there in myriad forms. The careful reader—of any neurology—will look into See it Feelingly and find themselves reflected there as well.

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*Poetics are sets of theories about how language is used artistically and politically in different settings.
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Autism and Intense Interests: Why We Love What We Love and Why It Should Matter to You

mardi gras bead overload
Photo © Deanna | Flickr/Creative Commons
[image: White child with short brown hair holding up
a massive bunch of colorful Mardi Gras beads.]
Maxfield Sparrow
unstrangemind.com

If you know an Autistic person or are Autistic yourself, you are familiar with the intense interests and consuming passions that we can get so engrossed by that we forget to eat, sleep, or even use the bathroom. While not every Autist has one or more deeply-lived interests*, the laser-focus with which we can approach preferred things is generally considered one of the hallmark traits of autism.

An Australian research study from 2016  demonstrated the tremendous value of going directly to Autists, by asking us about this tendency in order to discern our motivations. The researchers wanted to answer the question: why are Autists drawn with such intensity to the things that catch their interest? To that end, they developed a 20-item, self-administered assessment called the Special Interest Motivation Scale (SIMS). Statements about why one pursues one’s deep interests such as “because I enjoy broadening my knowledge about my special interest” were ranked on a seven point Likert scale.

The 20 items were divided into five broad categories:
  • Personal life values and goals
  • Intrinsic interest and knowledge
  • Prestige
  • Engagement and “flow”
  • Achievement
Based on the results of the SIMS—from 158 professionally-diagnosed Autists (86 males and 72 females), 185 non-autistic parents of Autists (35 males, 150 females), and a control group of 267 people with no autism and no psychiatric history (193 males, 74 females)—the study found that Autists had a higher motivation to pursue interests than non-autistic parents or controls.

The highest particular motivations were intrinsic and associated with “positive affect”—in other words, we pursue our interests because it makes us happy. This is one of the best, most accurate scientific studies of an Autistic trait I’ve ever seen. That’s exactly why we pursue strong interests -- it is inherently satisfying and fulfilling to us.

While some intense interests can lead to satisfying careers, it’s important that our interests not be considered valid or valued according to monetary measures. I see so much emphasis placed on turning intense interests into a career; just last week on Twitter many Autistic adults were debating with a therapist who had said that no Autistic child should be permitted to pursue any intense interest that would not lead to a career.

A valid argument the Autistic adults were making was that you can’t predict whether an interest would lead to a career or not—some do and some don’t. Some topics that seem ill-suited for vocational purposes lead to a life’s calling, while some rather mainstream interests like math or history have not turned into a career for the Autists who intensely pursued them.

But setting that argument aside for the moment, how can it be good for a child to forbid them to pursue an intense interest that is bringing them deep joy and feelings of self-worth and satisfaction? Yes, of course children (and adults!) cannot spend every waking moment pursuing an interest to the exclusion of all other activities. But the therapist with whom we debated talked about preventing all non-vocational interests.

Do we insist that non-autistic children cannot watch their favorite cartoon because it is not likely to lead to a future career? Of course we don’t! Most parents will not allow their child to park in front of the television 24/7, but the thought of telling a child they cannot ever watch Steven Universe because it will not lead to a good career is absolutely ludicrous! Do not hold Autistic children to unrealistic standards their non-autistic peers are not held to.

But there is a more serious reason still why Autistic people of all ages should be encouraged to spend time pursuing their intense interests. (Yes, I said encouraged to pursue their interests, not merely permitted to pursue them.) Whether an Autist is deeply interested in calculus or crochet, plate tectonics or toilets, history or license plate numbers, astrophysics or plucking blades of grass, being encouraged to spend time with those interests is vital for preserving our mental health.

The Autistic members of our human family are in crisis. Anxiety and depression occur at alarmingly high rates, and our rates of suicidal thoughts, attempts, and completions are horrifying. Encouraging Autists to spend time with our intense interests is not enabling or coddling us. It is crucial to our well-being, happiness, thriving, growth, and -- overly-dramatic though it might sound to you -- keeping us alive. Whether it’s categorizing every leaf from every tree in the neighborhood or taking 127 photos of the cat doesn’t matter. What matters is that the interest is special to us, of our own choosing, and warmly encouraged. I am not being hyperbolic when I tell you this is a matter of life and death for us.

The Journal of Autism and Developmental Disorders published a study last month which found that being accepted (or not) was significantly correlated with levels of depression among Autistic people. Let me spell what that means out for you: not accepting an Autist’s intense interest directly contributes to their depression. Accepting and encouraging an Autistic person to be true to themselves is healing and healthy.

When the researchers ran multiple regression analyses of their data, they found that being pressured to “camouflage” Autistic traits also makes Autistic people depressed. This means that it is counterproductive and harmful to have the goal to make an Autistic person “indistinguishable from their peers,” because that is the sort of pressure that leads to the shockingly high suicide rates researchers keep finding whenever they study us.

Oh, and the acceptance that Autistics need in order to be happy? The study found that it must come from within as well as from without. It’s not enough for the world to accept us; we must accept ourselves. I’m here to tell you that it is a tough task, trying to accept myself when the world clearly does not accept me. Autism acceptance from within is so much easier when I meet acceptance from without.

Autism acceptance therefore does not mean valuing me and my interests because they could earn me money some day—it means valuing me and respecting what I value, because I am a worthy human being deserving of dignity and happiness. I work hard to build up my own sense of self-worth, and encourage other Autistic people to build up theirs as well. Imagine my heartbreak and anger a few days ago when a parent commented on my YouTube video supporting suicidal Autistics and encouraging them to develop tools of self-acceptance and told the world that their child’s life was pointless because she would never marry, hold a job, or live independently!

Don’t bother looking for the comment; I removed it. But I am still reeling from it. How could a parent think it was okay to say their child’s life was pointless? And how cruel does a person have to be to say such a thing on a resource meant to help keep suicidal people—people like their own child—alive and aiming toward happiness? Cruel seems too mild a word for it. It was an evil thing to say.

Your life is not pointless. Your child’s life is not pointless. It doesn’t matter whether a person marries or not. It doesn’t matter whether a person drives, holds a job, feeds themselves, gets dressed without prompting, or not. No one’s life is pointless!

As Jesse Jackson told my generation on Sesame Street, whether you are poor, young, on welfare, small, make mistakes, have different clothes, a different face, different hair, are black, brown, white, speak a different language—no matter who you are, you must be respected, protected, never rejected, because you are somebody.

So the next time you are tempted to tell an Autistic person their interest is silly, trivial, a waste of time, weird, or pointless, stop—and remember why we love what we love. We are somebody, too, and we must be respected, protected, and never rejected. Encourage our intense interests. And if you are Autistic, do not feel ashamed of or guilty about your intense interests.

We love what we love because we are who we are. And that is a beautiful thing.

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*While the standard term for these deeply satisfying interests is “special interest,” I only use that phrase when I’m quoting someone else. It’s a point on which I differ with a large number of Autists, but I don’t like the term “special interest” (often abbreviated as “SI”.) I feel like it belongs in the bin with similar terms like “special needs” and “special education.” As the Down Syndrome community’s public service campaign reminds us, our needs are not special.

I would argue that the only thing “special” about our interests is their meaning to us; our interests are special to us.

I don’t call them “special interests” because we don’t say Bob Ross’ interest in painting was “special” or that Dr. Richard Feynman had a “special interest” in teaching. Being passionately consumed with a topic is a positive trait and I feel like calling it “special” just because the person being passionately consumed is Autistic is unnecessarily “othering.” Autism is a difference in intensity and frequency of traits found in non-Autistic people as well.

However, many Autists do embrace this language and love calling their passions “special interests” and I do not fault them for it. If you are not Autistic and are interacting with someone who is Autistic you should always follow their lead as far as what language they would like their identity and experience to be framed in.
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