Wednesday, November 28, 2018

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.

Friday, November 16, 2018

Eliminating Restraints and Seclusion Improves Outcomes for Injuries/Trauma, Expenditures, and Student Goal Mastery

holding on
Photo: Nancy Marie Davis | Flickr / Creative Commons
[image: sepia-tone print of a clenched fist, with superimposed scratched lines.]

Maxfield Sparrow
unstrangemind.com

A little over two years ago, Crystal Garrett wrote an article for Thinking Person’s Guide to Autism about the long-term traumatic effects on her Autistic son of the restraints and seclusion used against him at school. Garrett chose to end her career as a journalist to stay at home and school Zachary herself. Garrett wrote,
“We know a restraint and seclusion free environment is realistic. Virginia-based Grafton Integrated Health Network, an organization that works with children and adults with autism and co-occurring psychiatric diagnoses, went restraint and seclusion free ten years ago. Since then, their client and staff injury rate has dramatically gone down, while employee satisfaction has increased. They are now teaching their system, Ukeru, to others across the country, in order to create a trauma-informed environment for addressing aggressive behavior.”
Garrett also wrote about the importance of more people learning about the Ukeru model:
“Perhaps if more educational bodies knew about this approach, my 60-pound six-year-old wouldn’t have ever been placed in the back of the patrol car that hot summer day. We also wouldn’t have to travel the 30-mile stretch of highway for trauma-based therapy each week.”
Over a Decade of Research into Alternatives to Restraint and Seclusion

I couldn’t help thinking about Crystal and Zachary Garrett today when I learned that an official study of Grafton’s Winchester, Virginia, Ukeru program was published in Advances in Neurodevelopmental Disorder in August of 2018.

The study’s authors are Jason H. Craig (a BCBA at Grafton School) and Kimberly L. Sanders, who has filled many roles at Grafton and is currently the Chief Outcomes Officer. In another article earlier this year, Sanders writes about the Ukeru vision as “comfort versus control,” and writes that it’s more than just how people are trained to approach alternatives to restraint and seclusion but a “core operating principle” informing the entire philosophy of the organization. She links to a capsule explanation of The Grafton Method, the seven-point framework for addressing issues of restraint and seclusion with the committed intention to minimize or eliminate restraint entirely:
  • Leadership. Decide the organization’s mission, envision a path between the present and the future, plan actions and keep everyone focused on the goals.
  • Communications. Communicate the vision to staff. Set up communication practices within the organization that will keep everyone informed and on point.
  • Training. Teach everyone the best practices to use instead of restraint and seclusion.
  • Measurement. Keep track of what’s working and what isn’t. Measuring and record-keeping are what keep education scientific rather than intuitive, and documentation is crucial for repeatable results.
  • Debriefing. When an unwanted outcome arises, it’s important to establish clear communication to discuss what happened and how to achieve more desirable results next time.
  • Alternative solutions. At Grafton, brainstorming about alternative solutions was how Ukeru was developed.
  • Therapeutic planning. Don’t leave a student/client’s progress to chance: 
    1. Assess a student’s strengths and weaknesses
    2. Develop strategies around a student’s strengths, encouraging academic growth in an environment of safety and security for the student
    3. Train staff in techniques and documentation methods
    4. Monitor progress
    5. Modify what’s happening, based on progress toward goals (as well as adjusting goals when they no longer suit a client’s preferences and needs).
The study Sanders and Craig published is important because it represents peer-reviewed scientific evidence that eliminating restraints and seclusion not only have the direct benefit of treating clients with dignity and respect, rather than traumatizing them, but the Ukeru program has documented evidence that eliminating restraint saves on workplace injuries caused by client responses—which also saves organizations millions of dollars.

A copy of the Grafton study needs to be in every parent’s toolkit when arguing for the well-being of their children in the education system. Sanders and Craig have produced reputable scientific evidence that serves as valuable munitions for every parent’s IEP battle against a school that uses restraints and seclusion.

In a recent Scientific American article, Alycia Halladay writes about hyped-up autism studies and how harmful they are to Autistic people, saying,
“The mainstream news media need to consider a more measured and responsible approach to covering autism research. This should include very careful vetting of which studies are reported. Not all scientific journals are equal in their scientific rigor or review policies, so just because a study is 'published' does not mean it necessarily has scientific significance.” 
Advances in Neurodevelopmental Disorders is a reputable journal, and the Grafton study is crucial to developing appropriate methods for schools to interact with Autistic students, but I haven’t seen much, if any, journalistic hype for this study. I guess there’s nothing sensationalistic and headline-grabbing about NOT harming students.

Why the Grafton Study is Useful and Important

The Grafton study provides clear data useful when debating against the many people who insist that there is no way to get around using restraint against “violent people” because there is no other way to control dangerous behavior. These people often add statements about such harsh treatment such as saying that it is done “for the client’s own good” adding that people will have better future outcomes if we control their behavior now, and shape them into something socially acceptable.

As an Autistic advocate/activist myself, I also get told that I can’t understand the needs and benefits for Autistic people who “aren’t like [me]” because I’m allegedly only “mildly affected” and can’t understand the needs of “serious autism.” And if you’ve ever read anything else I’ve written, I don’t need to tell you how frustrating and infuriating that kind of talk is to me.

Humor me while I unpack those representative statements a little: There aren’t Autistic people who “aren’t like me” in a real sense, because we’re all different (being, you know, human beings) and no one on this planet is actually “like me” but the Autistic people on this planet are a heck of a lot more like me than the non-autistic people. Yes, I’m even talking about “those people”—you can fill in that blank however you choose. I have more in common with any Autistic person, even those who can do things I can’t, even those who can’t do things I can.

“Mildly affected” and “serious autism” are just euphemisms for functioning labels, and we Autistic folks have written so much already against that misunderstanding of autism. Let me just skip past that this time to tell you that I have a personal history of being restrained, secluded, and institutionalized. I am not speaking from some philosophical stance or set of political beliefs when I say that treating Autistic people with restraint and seclusion make us worse, not better. I am speaking from personal experience. Now, thanks to the Grafton study, we can all speak from a scientific basis as well when we talk about the ways restraint and seclusion make things worse for everyone, not just for the Autistic people these methods are used on.

In the introduction/literature review section of  their paper, Craig and Sanders talk about the 2006 policy paper issued by the National Council for Behavioral Health that said restraint and seclusion should be methods of last resort, used only after all other options have been exhausted. They also cite a 2012 paper from the American Journal of Orthopsychiatry that found restraint and seclusion to be “traumatizing and dangerous to both the children and the staff involved in each incident.” Some agencies have been successful in reducing restraint and seclusion while others struggle with the mandate.

Next, Craig and Sanders talk about the Trauma-informed approach (TIA) model. Instead of focusing on controlling someone’s behavior, TIA focuses on establishing a relationship between the student/patient and a trusted adult caregiver. When the student feels emotionally and physically safe, they will be more invested in accepting help and considering new ideas about their lives. This safe space allows the student to shift from a position focused on bare survival into a position where growth and learning can take place. Grafton’s comfort vs. control perspective grew out of TIA practices. Comfort vs. control aims to change interactions between staff and student such that the risks of traumatizing or re-traumatizing the student are significantly minimized, using the following techniques/philosophies:
  1. Response blocking. The simplest example is putting a pillow between someone’s face and fist to stop them from hitting their face and instead hit the pillow. Response blocking is controversial among some people. Most parents support response blocking because it directly prevents a student from injuring themselves. Response blocking in an ABA context can be either a punishment or an extinction, depending on how the client responds to being blocked.
  2. An understanding of behavioral intent and client needs. In other words, not just deciding what a client should or should not be allowed to do, but rather working to understand why a client chooses a particular action, feedback, etc. What unmet needs are driving the client’s behavior? “Behavior” does not happen in a vacuum; behavior is communication and/or an attempt to meet unmet needs.
  3. Developing creative solutions as alternatives to restraint and seclusion. How can using comforting techniques help clients calm and self-regulate? How can staff take care to not use control tactics on behavior that is disruptive and appears “out of control”?
These three points created a mindset shift among staff, allowing workers to:
  • Reassure clients.
  • Ask questions of clients instead of jumping to inaccurate conclusions and assumptions.
  • Embrace flexibility
  • Do not strive to always keep the upper hand / hold an imbalance of power / maintain control over situations and people.
  • Treat others with kindness and respect.
Sanders and Craig write,
“The belief was that many situations in which a restraint or seclusion was used could be better resolved by a non-coercive, caring intervention from a person focused on peaceful conflict resolution who was willing and able to spend time with the upset or angry individual.” 
I feel like that sentence highlights the biggest reasons why we are still wrestling with the demon of restraint and seclusion, even 14 years after a strong governmental policy recommendation against it: “willing and able to spend time.” So many workers are under such constraints of time and money that TIA feels overwhelming. Staff need to be educated about the time, money, and (most importantly!) human safety and well-being that will be preserved through implementing a TIA approach instead of restraint and seclusion.

How the Grafton Experiment was Conducted

Sanders and Craig examined the entire Grafton system, including over 750 employees and 3244 clients, male and female, from age 6 to age 22, with intellectual and developmental disabilities presenting at a wide variety and levels of support needs. At the beginning of the study, when Grafton began making concerted efforts to reduce restraint and seclusion, any and all of these 3244 clients were potential candidates for restraint and/or seclusion, if they were deemed to be a risk to themselves or others. The restraint reduction program began in 2004 and the year before the program there were 6646 incidents of restraint or seclusion. In other words, a client would be restrained or secluded on average more than twice per year.

The study authors also laid groundwork statistics representing the pre-intervention levels of measurable outcomes, particularly:
  • Rate of incidents of restraint and seclusion.
  • Rate of restraint-induced staff injuries (Why they did not count rate of restraint-induced client injuries is beyond me.)
  • Client-induced staff injuries.
  • Lost time and modified duty for workplace injuries.
  • Lost money due to all of the above causes.
  • Client outcomes / goal mastery
The results of the study came from a combination of carefully conducted interviews, and the raw data related to the above focused outcomes.

Research Outcomes

The researchers found that the Grafton Method reduced instances of restraint by 99%.

They reduced instances of seclusion by 100%.

Restraint-induced injuries to staff were reduced in the same time period by 97%.

Client-induced injuries to staff were reduced by 64%.

(I should note that client-induced injuries is one of the biggest reasons I hear cited for the need for staff at facilities to be able to restrain clients: fear of injury to staff. This result shows that staff were actually being injured MORE by the clients when there was restraint and seclusion and far LESS after restraint and seclusion were removed.)

There was an 81% reduction in lost days and modified schedules after reducing restraint and seclusion.

Lost expenses decreased by 75% overall. Between money lost to sick/injured days, worker’s compensation, employee turnover, and training, in the 12 years covered by the study, Grafton saved approximately $16.4 million (an average savings of $1.37 million per year) by restricting/eliminating restraint and seclusion practices.

As for client goal mastery, when the study started in 2005 the client goal mastery rate was 34%. By 2008 the client goal mastery was 66%. By 2018, that rate was 80%. Overall, this represents a 133% increase in the ability of the students to learn, grow, and change in positive ways desired by both the students and the staff.

Conclusions

Who (except us Autistics and many of our parents!) expected so much positive gain from simply choosing to treat clients with respect and kindness? Craig and Sanders advise other organizations to look at these results and choose to eliminate restraints and seclusion as well. They wrote, “Organizations need to learn to be more responsible and accountable, especially when it comes to the treatment to vulnerable individuals.”

It is my fervent hope that this study from Craig and Sanders will be widely cited and shared in the research community as well as the community of parents of school-aged Autistic children. We all need to get the word out about these results and get other researchers and organizations on board with the TIA approach to helping students feel more comfortable and less manipulated, controlled, bullied, and traumatized.

Everything in this study seems obvious to us, of course. Whether you’re an Autistic person, the parent of an Autistic person, a compassionate teacher looking for better ways to mentor your students, an activist or policy maker—it should seem obvious that life is better for everyone when we aren’t tackling vulnerable people to the ground, punishing, and isolating them for the “crime” of being different and struggling with self-regulation, sensory onslaught, and the countless other daily battles Autistic people have with our environments.

But these things are not obvious to everyone. A study that demonstrates significant savings in money will sway some organizations. A study showing less injury to staff will sway others. This study demonstrates both and more. Add it to your collection and use it as evidence in your fight to make the world a better place for Autistic children, the Autistic adults they will grow into, and everyone whose life touches or is touched by the lives of our precious Autistic children who deserve so much better than our society has been giving them.