Wednesday, December 12, 2018

His Hands Were Quiet: A Review

[image: Brown book cover. Small yellow text at
the top reads, "Zachary Goldman Mysteries 2"
Next, the title in white all caps text reads,
"His Hands Were Quiet." Next is an image of a
yellow triangle with a silhouette of a person bending
backwards and being in the chest with a bolt of
electricity. Large yellow text at the bottom reads,
"PD Workman".]
Maxfield Sparrow
His Hands Were Quiet
By P.D. Workman

Content notes: suicide, abuse, murder, house fires, burn injuries, PTSD, Judge Rotenberg Center, ABA

This book review gets all the Autistic trigger warnings. It is a gripping thriller/suspense novel that could help people understand autism and Autistic people better, and it is raw and honest about what some of the most vulnerable Autistic people endure. It will be a tense read for everyone and could be especially triggering for many Autistic people, so proceed carefully with this review and remember that your self care is more important than anything.

Zachary Goldman is a private investigator with his own past history of trauma. He grew up in the foster care system and had a long and painful recovery from being badly burned in a house fire. He’s not in the greatest life situation when the novel opens—he’s sleeping on someone’s couch and not even doing that very well. Zachary suffers nightmares and insomnia from the stress of his current situation and the long-term effects of trauma.

When the mother of an Autistic boy living in a residential facility contacts him to investigate her son’s death—the institution and the coroner have decided that her son’s death was a suicide but she doesn’t feel that’s the truth—Zachary falls down a rabbit hole of autism therapies, electric shock, and adult Autistic protestors. Will Zachary uncover the truth about the boy’s death? Was it suicide? Murder? And why do the therapies used in the school make Zachary feel so uncomfortable? It looks to him like torture, but surely professionals know what’s right?

I have been a fan of P.D. Workman’s writing for years. She mainly writes YA and adult genre fiction and develops relatable underdog characters who move the story forward with their drive to understand and be understood. Workman’s characters seek and speak truth while others doubt their information and often their basic life competence.

Zachary Goldman is no exception to the theme. In fairness, his life is in shambles when the story opens, but people hover, untrusting. His ex, and his friend who owns the couch Zachary is crashing on, suspect he’s going off the deep end when he becomes obsessed with the school, the therapies, and the autistic children as he watches more and more troubling “therapeutic” situations—including a malfunction of a skin shock device, resulting in an electrical burn on an autistic girl’s skin.

As you may have already guessed by now, the school in the novel is modeled after the infamous Judge Rotenberg Center (JRC). When Zachary begins his investigation, he’s shown reward areas with cartoon characters, bright colors, a ball pit. He’s given the “glossy brochure” tour and might have walked away satisfied if it weren’t for all the protestors outside. The school’s director has Zachary enter and leave through a back door, hoping he would ignore the protestors, but Zachary ends up talking to a woman, an Autistic adult, who is with the protestors.

There are many moments in the novel that shine as not just scenes in a well-crafted story, but sensitive and insightful teaching moments. Zachary’s conversation with the protestor is one of those moments. As a longtime fan of Workman’s writing, I knew she was working on this novel and, along with many other Autistic activists and advocates, helped her connect with as much #ActuallyAutistic #OwnVoices as we could. Her research was tremendous and I felt a depth of understanding of Autistic issues throughout the novel. Some characters are ableist, some are grappling with entrenched ableism, but the bedrock of the novel is clearly respectful and Autistic-allied.
“Even without aversives, therapy can still cause PTSD or other anxiety or emotional problems.” 
Zachary scratched the back of his neck. “Do you have proof of that?” 
“I am proof of that.” 
He looked at her, studying her face and her body language. “You did ABA?” 
“Yes. I did.” 
“What for? You aren’t autistic, are you?” 
“Yes, I am.” 
 “You… must be very high-functioning. I wouldn’t have guessed it…” 
 “Do you think that’s a compliment?” she snapped. 
Zachary fumbled for an answer. He had clearly said the wrong thing. He’d somehow insulted her. And he didn’t know what he’d done or how to undo it. 
“You think I want to be like you?” Margaret persisted, her eyes flaming. 
 “Like me?” Zachary let out one bitter bark of laughter before he caught himself. “No, I don’t think you would want to be like me.”
(From His Hands Were Quiet, location 1088, Kindle version)

Researching for the case, Zachary reads the ABA classic text, The Me Book by O. Ivar Lovaas. At points throughout the story, Zachary reflects on what he had read in The Me Book and how it relates to the aversive therapies he witnesses in the school.
And Lovaas… what had Lovaas said? He had said something along the lines of some children being rewarded by negativity and punishment, so that the parent or therapist had to be very angry and hard on them to get the proper results, and that weeks or months of such intense therapy could be taxing on the parent. Poor parents, having to be so hard on their kids. Zachary shook his head, thinking about the arrogance of such a statement.
(Location 1995)

His Hands Were Quiet serves as an engaging fictionalized introduction to many crucial issues in the Autistics Rights movement. Many people who would be disinterested in reading non-fiction political writing will find themselves drawn into and caring about the human rights issues of the JRC, ABA therapies, the presumption of Autistic competence, and related issues through reading Workman’s mystery/suspense novel. His Hands Were Quiet is part of a series of novels about Zachary Goldman’s cases, but reads well as a stand-alone novel.

If there are people in your life who enjoy detective novels and would want to (or NEED to!) learn more about autism, here’s your Christmas present for them. Workman’s eye-opening story will lead to many fruitful discussions and much increased empathy for the struggles and needs of Autistic people.

Once more, I warn about the general content of the book, which can be intense at times, both in the ways that most mystery/suspense novels are but also for any Autistic who has experienced stressful therapies. With that caveat in mind, I loved this novel and recommend it to anyone who enjoys the genre.

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.

----

*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.

Friday, November 2, 2018

Knowing Why Is Everything: An Interview With Editor Elizabeth Bartmess on Adult-Diagnosed Autistic Perspectives

Sarah Kurchak
www.riskyfuel.com

The Knowing Why book cover
[image: Book cover with a black background,
with silhouettes of people of all sizes
and a dog, in a rainbow of colors.
Rainbow-colored text  at the top reads,
"Knowing Why: Adult-Diagnosed Autistic
People on Life and Autism.]
There are many problems with the ways in which autism is currently seen and represented in the media and public discussion. When the face of autism is still predominantly white, cisgender, heterosexual, middle or upper class boys, it erases autistic people of color, LGBTQA autistic people, and poor autistic people from the conversation and denies them vital supports and resources. It also ignores the fact that there’s an entire segment of the autistic population that spends their entire childhoods and adolescences not knowing that they’re autistic at all.

As someone who wasn’t diagnosed until I was 27, I grew up knowing that I was different but not understanding how or why for a large chunk of my life. That experience has shaped me in both positive and negative ways that are sometimes quite different from those of my counterparts who knew so much earlier. This has made me particularly interested in the perspectives of other people who have gone through similar processes. What common ground do people who were diagnosed or self-diagnosed in adulthood have? How do race, gender, sexuality, and class influence this later onset understanding of oneself? How does adult diagnosis inform our past, present and future? What can we learn from each other?

So I was thrilled when The Autistic Self Advocacy Network released its anthology Knowing Why: Adult-Diagnosed Autistic People on Life and Autism. The collection includes nonfiction pieces from a diverse group of autistic writers, and tackles everything from intersecting identities to passions to workplace concerns and burnout. It’s an excellent read and a valuable resource for anyone who has been through the process of being diagnosed or self-diagnosed as autistic in adulthood, anyone who wants to better understand us, and anyone who might be wondering if they might be autistic themselves.

I corresponded with the book's editor, Elizabeth Bartmess, to learn more about the anthology’s genesis, conception, and goals.

Can you tell me a little about the genesis of this anthology? What made you want to produce an anthology of work by people who have been diagnosed or self-diagnosed as adults?

In 2015, I was organizing collaborative Twitter hashtags, including #AutChat (which I'm still doing) and the #AutismMeans hashtag series. Ari Ne'eman asked if I was interested in editing this anthology for the Autistic Self Advocacy Network (he was president of ASAN at the time). He proposed a nonfiction anthology, with personal narratives by adult-diagnosed/adult-self-diagnosed autistic people, aimed primarily at an autistic audience.

When autistic people come together and share their personal experiences, a particular kind of magic can happen. Often there are refrains of "I thought I was the only one!" and "I never realized that was related to being autistic." Frustrations get shared, tips get passed around, lives get better. (This isn't just an autistic thing, of course, and it doesn't always happen, but I've seen it happen often.)

We also learn about experiences that differ from our own. Autistic people vary in our autistic characteristics, in other aspects of our identities, and in our own specific life situations. Creating supportive communities requires developing a broad understanding of both our similarities and differences.

When people learn they're autistic later in life, and get accurate information about autistic experiences, they often have many closely spaced epiphanies about their lives. I found this valuable to go through myself, and fulfilling to help happen for other people. The anthology was an opportunity to do that on a broader scale.

Did you have a list of prospective authors in mind when you started to put together this anthology?

There so many good autistic writers! Some people came to mind immediately, and I learned of more people along the way. In a couple cases I asked for adaptations of existing pieces. We also put out a call for interested writers, and got a big response. The final set of contributors is about half-and-half people I approached, and people who contacted me.

As an adult-diagnosed person myself, I’m impressed and pleased at the wide variety of extremely relevant topics that are tackled in the collection. Did you have themes in mind, or did they naturally appear as a result of the material the writers were submitting?

Thank you! I asked some authors for pieces on specific topics (intersectionality, mental health, managing disability and chronic illness, sensory and social issues). Other authors suggested topics; the ones included in the anthology are burnout, accommodations at work, technology, and passions, (often called "special interests"), and intersectionality and coping skills. The overall theme—the value of knowing that you're autistic—emerged out of the individual pieces.

Some common topics have been covered in depth elsewhere, so I didn't include them in the anthology. For example, navigating the diagnostic process as an adult, job interview etiquette, handling college. There are also important underserved topics I didn't include, such as trauma recovery, acquiring needed supports, poverty, and homelessness. Those need careful and extensive coverage, and I didn't think I could do them justice. And there are topics I didn't include because I didn't have space, or didn't realize their importance at the time, or had them lined up but they fell through (aging, parenting, pregnancy, queer dating and relationships are particular topics that come to mind). Many of these topics have had some work done, but it would be great to have more.

I really love your introduction, which addresses a lot of questions that I think every autistic writer and/or public figure receives when they write anything about their own autism. It also addresses a lot of concerns that many autistic people have about their own place in discussions like these. Why was it important for you to tackle these concerns so directly off the top?

Thank you! I wanted to address common misconceptions right off because they can be particularly emotionally fraught for autistic people who weren't diagnosed in childhood, to the point that even just reading about autistic people's experiences can be stressful. I think it's helpful for non-autistic readers too, but the primary reason I wanted to address them was autistic readers.

The first misconception is that if someone wasn't diagnosed as a child, it's not important for them to know they're autistic. Autistic people are often told we don't have the experiences or needs that we do have, and we internalize that, to one degree or another. Many undiagnosed autistic adults first seek help and answers when unattended needs and the cost of masking autistic traits have pushed us into crisis, because it can take a crisis to override our internalized beliefs that we don't need or deserve support or understanding. Even people who aren't in active crisis are often struggling; it's just not true that lack of diagnosis/self-diagnosis means that we're fine.

The second misconception is that exploring whether we're autistic, thinking we're autistic, self-diagnosis, or even formal diagnosis insults and harms "real" autistic people. That's not true for a lot of reasons—health professionals often fail to diagnose people for superficial reasons, like being nonwhite or being female-presenting—but the reason I wanted to emphasize is that even if they're ultimately wrong (and they're generally not), when people explore whether they're autistic by reading about autistic people's experiences, it increases knowledge and understanding of autistic people. And when people realize they're autistic, that typically helps them personally, and also helps other autistic people generally. There's strength in numbers.

The third misconception is that autistic people are alike, so that if you don't see yourself in someone else's experience it must mean you're not really autistic. Autistic people vary a lot! That's part of what being autistic involves.

Your introduction also includes an acknowledgement of adults who are questioning whether or not they might be autistic and the anthology includes a list of resources for them, as well. Why was it important to you to reach out to this population?

I addressed some of this in my answer to the previous question, but I'll mention two additional reasons.

First, in my experience, and that of other people I've talked to, people generally start considering that the might be autistic because they are. Not always—sometimes it's some other variety of neurodivergent, like ADHD or CPTSD (both of which are common in autistic people too! Having one of those isn't equivalent to not being autistic). But they're rarely neurotypical.

Second, autistic people have built a number of strong autistic communities. People in them often have strong autistic identities, and talk about our differences from neurotypical people, and that can give outsiders the impression that if they don't have a strong autistic identity they must be neurotypical. That's not true; being autistic and having a strong autistic identity aren't the same thing. But people who are questioning whether or not they might be autistic can get the impression that it is true, and that's a barrier to self-knowledge, support, and help. (Including for people who are not autistic, but some other variety of neurodivergent.) So it's important to reach out.

Autistic people who were diagnosed or self-diagnosed in adulthood can have very different experiences—and often very different feelings about their autism—from those who were diagnosed as children. Is there anything that you hope that someone who was diagnosed in childhood might take away from reading this anthology?

When adult-diagnosed/adult-self-diagnosed people learn they're autistic, they typically have more autonomy than kids or teens do. Adults usually have more ability to influence who else gets to know that they're autistic, to refuse harmful quack "cures", and to refuse harmful therapies. (Not always, but more often.) Adults are also more likely to get diagnosed or to self-diagnose because of needs they themselves have identified.

This doesn't mean that it's better to wait for diagnosis as an adult. Often by the time we get diagnosed or self-diagnose, we've had many negative life experiences that already knowing they were autistic would have helped with. It's better to be diagnosed earlier and also not be subjected to mistreatment.

I hope what this anthology offers to autistic readers who've had bad or mixed experiences—some early-diagnosed autistic people but also some late-diagnosed/late-self-diagnosed autistic people—is a picture of what knowing you're autistic should get to look like: the benefits of self-knowledge when combined with relative autonomy and the ability to refuse consent to diagnosis-related harmful treatment. This is the world we want for all autistic people.

(A few caveats: knowing that you're autistic can do more harm than good when accompanied by misinformation about autistic people. For some people, learning that you're autistic means realizing that some things they thought they could change, they can't; that's rough, and grieving over it is normal. And sometimes the diagnosis can result in having autonomy or opportunities removed, even for adults.)

I think the anthology can also offer the same thing that learning about other autistic people's experiences can offer any autistic person, regardless of age at diagnosis/self-diagnosis: the chance to compare someone else's experiences to your own, think about might-have-beens, and potentially come up with ideas that could help you now, or that could help people who were in a position that you used to be in and that you could potentially help work toward, if that's something that's rewarding for you.

What about potential non-autistic readers? Is there anything you hope that they’ll take away from these essays?

That being autistic affects so many different aspects of our lives. That our experiences and challenges are not necessarily reflected in what we may look like to casual observers. That our identities are complex, and not just about being autistic. That we can be incredibly resourceful (even if we shouldn't be tasked with as much as we are).

Some non-autistic readers understand some or all of this already, particularly people who share significant similarities with autistic people due to other neurodivergence or disability, but also some neurotypical readers. They may be able to pick up some useful tips or ideas from the anthology, since coping skills that help autistic people can help other people, too.

Is there anything else that you’d like to address or discuss in this Q and A?

I started writing an answer, which accidentally turned into an essay too long for this interview. The brief version: how can we use accumulated autistic self-knowledge—of which this anthology is a part—to help deal with the extra burden that current and ongoing geopolitical events impose on autistic and similarly disabled people? In particular, how can autistic communities support autistic and similarly disabled people who are already maxed out and have no time or energy to devote to helping anyone else?

The anthology closes with a piece by A.C. Buchanan encouraging us to think and discuss our relationship to technology, not just as individuals but as communities. I think we can better use technology to expand the reach of our community-developed self-knowledge—in particular to help more autistic people identify themselves as autistic, to create additional supportive connections between autistic people, to create additional autistic spaces and make existing autistic spaces more inclusive, and to make more non-autistic spaces more accessible (including activist spaces).

There are already people who work on all of these and have worked on them for a long time, and made progress. I think we can channel more community effort into supporting those efforts and into creating new ones, and that using technology in new or different ways will be part of that.

Wednesday, October 17, 2018

Understanding Competing Accessibility Needs

Photo © Steve Guttman | Flickr / Creative Commons
[image: Two small white dogs trying to wrest a red ball from each other's mouths.]
Brooke Winters
www.brookewinters.com

Many neurodivergent people struggle with loud noises and are unable to attend events where people clap and cheer. Manchester University Students Union recently made headlines when reps from the union voted to introduce British Sign Language (BSL) clapping at students’ events and encouraged societies and student groups to do the same. The reason for this measure was to make student events more accessible and inclusive.

Predictably, the response on social media was negative, with people claiming that clapping is a human right, that “they’ll be banning breathing next,” and that people who can’t handle noise are weak snowflakes. One of the frequent arguments I encountered against use of BSL clapping was that it would be inaccessible to blind people.

In fact, quiet environments can be inaccessible to many disabled people and policies like this can do as much harm as good, because disabled and neurodivergent people are not a monolith. Disability is complex, and experiences of being disabled are diverse. Different people have different access needs and sometimes those needs are incompatible with each other. As disabled writer Karrie Higgins recently said, sometimes conflicting needs can even exist within the same person.

There are many examples of how we can make things inaccessible to one group by making them accessible to another. A good example is captioning films at the cinema. As an autistic person who is hard of hearing, subtitles make films more accessible to me. Often I am unable to watch movies with captions at the cinema, because even though my local cinema has nine screens, there is only one subtitled film per day: The cinema chooses the most popular one and plays it in the middle of the day. Often I am not interested in this film, and I work during the day. I used to be of the opinion that all films should have open captions. After all, D/deaf and neurodivergent people deserve to watch whatever films are available to hearing and neurotypical people at times that are convenient for us. I had thought that by captioning all films they would be accessible to everyone—but then I read a twitter thread by an autistic, hyperlexic person who explained why subtitles make films inaccessible for her and some other hyperlexic people.

There are many more examples that I can think of from my personal experience alone. My sister is claustrophobic and can’t use lifts. I have fibromyalgia and often can’t use stairs. I have a friend who can only see the cinema screen if we sit right at the front, but this hurts my neck and triggers my fibro. Every summer I joke that my fibro loves the hot weather because my joints hurt less in the sun, but my autism hates it because I have sensory issues.

In autistic communities I think we generally understand that it’s not always possible to make things accessible to everyone. The ways that being autistic affects different people are so diverse, and our access needs can be so different, and often incompatible with each other.

Like many autistic people, I need quiet spaces. I can manage noise for a limited period if I have somewhere quiet to retreat to. Other autistic people can be very loud and need spaces where it’s acceptable for them to make noise. I’ve attended autistic events where organisers did everything in their power to be accessible to as many people as possible, but in doing so made it inaccessible for me. For example, at one event the feedback from the microphone was causing people a lot of pain so the speaker switched it off. I’m agoraphobic and needed to sit at the back and could no longer hear what was being said. At another, the lighting was dim to accommodate people who are sensitive to bright lights and, being visually impaired, I could not see anything.

I think it’s just about impossible to make one event accessible to all autistic people (although I hope we keep trying and improving). When I think about one of my favourite pasttimes, going to the theatre, I can’t help but think about how the theatre is inaccessible to many neurodivergent people, but sometimes in different ways. As someone who is sensitive to noise, I can struggle with the clapping and cheering that takes place throughout performances. I find it easier to go to the cinema where, except for the occasional conversation and rustling of sweets wrappers, it’s mostly quiet. I also have friends who struggle at the theatre because they have verbal tics and it’s generally not acceptable to make noise, outside of clapping and cheering, at the theatre. In fact, one autistic woman, Tamsin Parker, was removed from a cinema recently for laughing too loudly. There are relaxed performances, where it’s acceptable to make noise and move around, but these are generally aimed at children.

The argument that BSL applause would make events inaccessible to blind people was a red herring, a way for people to justify their ableism. Many of the people who made this argument probably never thought about how it takes more than applause to make the visual parts of a performance or event accessible to blind people. Often blind people can’t attend events because there is no audio description, and I imagine the same people who complained about BSL clapping would moan if a blind person had their friend describe what was happening during events or performances. Most of these people have probably never considered that people can be blind, deaf, and autistic, or any combination of the three, and that for those of us who are, accessibility is a balancing act.

Accessibility is difficult and it’s complex but that doesn’t mean that we shouldn’t bother with it. In a recent survey conducted by Autistic Not Weird, over 75% of autistic people said that they felt socially isolated. I was not surprised by this at all. We live in a world where most events are not accessible to us and when steps are taken to improve accessibility there’s a backlash. Of course, that results in us feeling isolated, and in turn that probably affects the higher rate of mental illness and suicide among autistic people.

It’s vital that every disabled and neurodivergent person can attend events that are accessible to them. Accessibility is too important for us to ignore just because it can be difficult or unpopular. We also can't choose one group and decide to make everything accessible to them, and inaccessible to other people. It’s not acceptable to sacrifice one group of disabled people for another, nor is it necessary.

It may not be possible to make every single event accessible to every disabled person but there are steps we can take to make sure that every disabled person has events that are accessible to them. For example, rather than making every film at the cinema captioned, we could have a fifty-fifty split, with all films, captioned and uncaptioned, being available at various times of the day. It’s also important that there are events where people can make noise, and events where people can expect it to be relatively quiet and free from sudden noises. It’s important that the type of applause we use is accessible to the performer or speaker, so if that person is blind in most cases it would be inappropriate to use BSL. If the performer is D/deaf or if clapping and cheering would likely cause them distress, BSL is likely to be more appropriate.

The idea of making something fully accessible is attractive and I have come across policies (often but not always written by abled people) that aim to create inclusive and accessible environments by being prescriptive about what accessibility is. The intention is usually good, but the outcome is often that some disabled people have their needs and experiences erased. In the worst case scenarios this can result in the policies being weaponised against neurodivergent and disabled people who don’t fit into people’s idea of disability.

Blanket rules for all events ignore the different access needs of disabled people and can be used to harass, bully and exclude disabled people, which is the opposite of its intended purpose. There is no such thing as fully accessible, but what we can strive for is a world in which everyone’s needs are acknowledged, accepted, and catered to. And that begins with listening to disabled people.

Thursday, September 27, 2018

Neurodiverse-Friendly Workplaces in Your Community: A Symposium Report

Photo courtesy Max Sparrow
[image: Symposium organizers and presenters stand in front of the Dirt Coffee
Truck while the Dirt workers smile from the left window of the truck.
From left to right, the people pictured are: Dr. Elaine Meyer, Bill Morris,
Lauren Burgess, Kris Harrington, Drew Webster, Dr. Stephen Shore,
Dr. Kristie Koenig, Thomas Koenig, David Finch, Becca Lory Hector,
Philip Tedeschi, Antonio Hector, Erica Elvove.]

Maxfield Sparrow

UnstrangeMind.com

I am sitting in Dirt Coffee in Littleton, Colorado. Ryan, an outgoing young woman with enormous blue eyes, has served me a massive Americano to which I’ve added tons of cream. “Do you know about our mission?” she asks me.

I do know the mission of Dirt Coffee, but I let her tell me anyway because I want the joy of hearing the words again.  I discovered Dirt Coffee earlier today when I attended a symposium at the University of Denver’s Graduate School of Social Work where I heard heartening words about local workplaces that are making the effort to create friendly, inclusive environments for their neurodivergent workers.

The symposium, which ran from nine in the morning until half past eleven on Friday, September 21st, 2018 (after which many of us retired to the excellent mediterranean restaurant across the street to continue networking and sharing information), was sponsored by Colorado’s Center for Neurodiversity and The University of Denver Institute for Human-Animal Connection.  The headliners were Dr. Stephen Mark Shore of Adelphi University in New York and Dr. Kristie Patten Koenig of NYU. The two joined an impressive panel with Philip Tedeschi of the Institute for Animal-Human Connection, Lauren Burgess, founder of DIRT Coffee, and Bill Morris, the CEO and director of Blue Star Recyclers.

First, however, Becca Lory Hector, the Director of Communications/Program Design and Admin at the Center for Neurodiversity, spoke, setting the tone for the event by talking about the importance of community and thanking everyone for taking the time to change the conversation around neurodiversity because we can do so much better than we are. Then the host and moderator, David Finch, author of The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband and second-season consultant for the Netflix show Atypical, got the audience laughing by sprinkling jokes through his introductions of the panel members.

Dr. Stephen Shore opened his presentation by talking about central coherence and hyperfocusing. This autistic trait is often framed as a negative “symptom” of an “illness,” but Dr. Shore demonstrated why that is an erroneous way to view such a core aspect of how our brains work. He put up two photos of the same carousel and asked the audience to find ten or eleven tiny differences between the two photos. My friend Dennis Mashue, seated next to me, cracked me up by saying, “the top box is labelled number one and the bottom box is labelled number two.” I shot him a look and he shrugged, “At lunch yesterday Stephen said we should all think outside the box.”

We found a few differences, and then Dr. Shore revealed all the rest of the differences to us. Then he removed the photos from the screen and asked us: what was this a picture of? What animal was in the foreground? What color is the animal behind the first one? How many animals are in the row closest to us? We could only answer the first two questions because the exercise had forced us to focus on the details so much that we missed seeing much of the big picture. Dr. Shore explained that we had just engaged in an autistic thinking style and asked us: Since neurotypical people are usually better at seeing the big picture, does that mean they have a deficit of detail-oriented observation?

Of course that’s not the case. Our society does not generally view the ways a majority of people view things as deficits. Dr. Shore clearly demonstrated that focusing on details is not a deficit, simply a different way of engaging with the world—in fact, it is a way of engaging that can have a lot of benefits. Dr. Shore asked the audience to name some tasks that benefit from detail-oriented thinking. Audience members called out: coding, film production, reading knitting charts, technical editing. Being detail-oriented, as well as many other autistic traits, are labeled as deficits or deficiencies, but Dr. Shore implored us to instead look at autism and other neurodivergences as presenting challenges, but stressed the importance of focusing on strengths when considering autistic people.

Instead of thinking of autism as deficits in communication, socialization, and restricted interests, Dr. Shore told us, we should be focusing on possible areas of success by looking at how an autistic person prefers to spend most of their time. What are their abilities? What are their interests? (Dr. Shore interchangeably used the term “special interest” and “focused interest.” I’ve been fumbling for a better phrase than “special interest” because I don’t like using the word “special” to describe aspects of autism or other developmental disabilities. I really like “focused interest” a lot as an accurate, non-pathologizing term.)

Another question Dr. Shore recommended for those seeking to help an autistic person find their areas of employment success was: What kind of mind does the person have? To illustrate the last concept, he asked the audience if they knew what kind of mind autistics have, asking, “is it a visual mind?” Dr. Shore was pleased to see that no one raised their hand and explained that, while many, perhaps most, autistics are visual thinkers, others are so much the opposite they can’t even read a map. It was a caution against stereotyping the entire body of autistic people as having one particular type of thinking or the same learning needs. I particularly appreciated Dr. Shore making this point because I am not much of a visual thinker. I can mostly read a map but that’s the summit of my abilities.

Dr. Shore talked about the “three As” of autism: awareness, acceptance, and appreciation. He said that organizations have done a pretty good job of awareness and explained that acceptance does not mean just giving up on a person and their future but rather viewing autistic people as whole and valuable human beings who do not need to be eliminated, cured, or made to look and sound like everybody else. Appreciation, of course, would be a natural result of reframing how society views autistic people, using an abilities-based model to help channel people into employment that suits them, and seeing society’s benefits, the results of including neurodiverse people in the workforce.

Dr. Shore mentioned a Los Angeles organization called Autism Works Now and the Glorious Pie business that has come out of it. While the page has some language that does not match Dr. Shore’s message (e.g. “Larry King’s fight against autism”) the organization overall appears to be doing a lot of good work in helping autistic people find jobs, and helping employers understand why autistic people make great employees.

This was my first time seeing Dr. Shore speak and I am a huge fan now. I admit that I was worried about what he might say since he is on the board of Autism Speaks and most people familiar with my writing already know that I do not like Autism Speaks. But after hearing what Dr. Shore had to say, I am grateful that he is working with Autism Speaks and hope that his message of acceptance, focusing on strengths, and inclusion are influencing the organization in positive, helpful ways. I unreservedly recommend Dr. Shore’s work as he is so clearly a force for good in our community and in the world.

After Dr. Shore spoke, his close colleague and friend of many years, Dr. Koenig, spoke about the difference between equality and equity. She showed a slide of four people who each got a bicycle. The bicycles were all the same: it was equal and ‘fair.’ But one person couldn’t use their bicycle because they were a wheelchair user who didn’t have leg strength to use the pedals. Another was too tall to use the bicycle and a third was far too short. Only one person could enjoy the bicycles—not fair at all!

But in the next slide the short person had a smaller bicycle, the tall person had a bigger bicycle, and the person who uses a wheelchair had a hand-pedaled quad bicycle. When all the bicycles were the same only 25% of the users were able to enjoy the bicycles. When each bicycle was different, to accommodate for the differences between riders, 100% of the users were able to enjoy the bicycles and instead of being merely equal, there was actual equity.

Dr. Koenig used this example to illustrate an important consideration: individuals know what they need. Professionals should listen to people explaining their needs rather than assuming they can just figure out people’s needs and fill them with no input from those who will have to live with those professionals’ choices.

In addition to speaking, Dr. Koenig showed some film clips. One clip said that neurodiversity is as important for the human race as biodiversity is for life itself. She also showed a clip of the actor Benedict Cumberbatch in The Imitation Game, a film about genius mathematician Alan Turing. (Turing was quite likely neurodivergent, possibly autistic.) Dr. Koenig showed a clip in which Turing was very literally interpreting what his colleagues said, and she talked about how Autistic people can leave others feeling as if they are rude or irritating because of the differences in how we communicate.

Dr. Koenig also pointed out that whenever businesses support neurodiversity in their workforce they see an increase in productivity and profit as a result. The diverse strengths, skills, and abilities autistic people have mean that matching autistic minds to the best fitting trajectory will not only be transformative for us but also for the employing workplace and for society at large.

After Dr. Koenig spoke, David Finch began asking questions of the entire panel. Sometimes I could tell who was saying what, but not always because I was sitting in the back. Here are some of the things people talked about:

We have to force inclusion. It will not happen naturally. But we can force inclusion in powerful and compassionate ways. One panel member suggested that a Christian model might call that sort of forced inclusion “grace.”

Communication is very important. Many people type to communicate, and we have to keep offering that option (as well as other forms of communication beyond speech) to everyone to keep communication channels as open as possible. Most people tend to be lazy communicators so we need to help autistic people with the tools to engage in communication as much as wanted/needed.

Small talk is virtually useless, but people engage in it anyway. How long does it take to genuinely check in with someone? If we think that extra time is a burden we need to re-think. A work environment that is humane and inclusive is also economically valuable. Companies will want to choose humane communities and look for strong inclusive values and attitudes plus policies in place to support those values. Building accepting communities helps everyone. There is research supporting this but it’s hard to briefly cite because it’s multi-disciplinary and you have to integrate findings from many places to come to these conclusions. (Note from Max: I hope some academics do that integrating work, write down the results, and publish. I’d jump at the chance to read and write about that research!)

Someone (I think it was Dr. Koenig) mentioned the importance of authentic autistic involvement in all research about us and our lives. In that vein, they recommended PARC: The Participatory Autism Research Collective.

Lauren Burgess talked about the DIRT coffee shop she founded in 2013, its mission to employ neurodiverse people, and their internship program and education. More than once Burgess mentioned that neurotypical employees routinely required more training and more supports (like visual aids) than the neurodiverse employees. Burgess told a story about an employee who developed a highly efficient way to do inventory. Burgess mentored him by suggesting he train all the other employees in his system. He wrote detailed instructions in an email and now everyone uses his system.

David Finch responded that one mentor can put everything on track for an autistic worker by suggesting things (like taking a leadership role) that might not have occurred to the autistic person.

Bill Morris talked about his business, Blue Star Recycling. He talked about his early struggles when he was first promoted to management in his twenties and learned “Be the kind of boss you’d like to work for.” As a result, he runs his business that way. His employees are neurodiverse—from entry-level employees to management. Morris praised the strengths of the autistic people working in his business, and said that the attention to detail was perfect for the work they do: dismantling old electronics so the parts can be reused in other devices and projects.

Finally Dr. Elaine Meyer , who was in the audience, spoke about a press release issued earlier this month, announcing that Harvard’s Center for Bioethics will be collaborating with Colorado’s Center for Neurodiversity in studying issues surrounding “ethics, human rights and neurodiverse qualities of life.” The press release states the goals and aspirations of this collaboration are, “expected to evolve and, most importantly, be responsive to the priorities and needs of a neurodiverse population. There will be an emphasis on joint projects including conferences serving academic and lay audiences; innovative educational offerings such as webinars and simulation-enhanced learning opportunities; a range of scholarship; media presence; and timely policy statements. It is anticipated that the Center for Neurodiversity may serve as a placement for the Master of Bioethics students to fulfill their year-long Capstone Project requirements, culminating in scientific poster sessions and scholarly publications.”

Overall, the symposium was very upbeat and positive. Attendance was good, and many people raised their hands when asked how many were neurotypical (NT) professionals who work with autistic people. Hopefully the information everyone shared will help professionals and employers better serve autistic adults, and make a significant dent in the distressingly high unemployment rate autistic workers face.

Later, at Dirt Coffee, Ryan mentioned that high unemployment rate. I asked for the WiFi password and it turned out to be a variation on the statistic of 90%. “Do you know why that’s our password?” Ryan asked me, looking genuinely eager to tell me the answer.

“Why?” I was genuinely curious to hear the answer. I had instantly liked Ryan. She is authentically friendly and made me feel welcome from the moment I walked in the door.

“Because 90% of people on the spectrum are unemployed or underemployed,” she told me.

The statistic I’ve always seen is 85% so I have no problem accepting that Dirt Coffee found a source citing 90%. What an important WiFi password, and opportunity for education.

Companies like Dirt Coffee and Blue Star Recycling, academics and researchers, writers and advocates, parents, adult autistics, and more are all working toward a brighter future for autistic adults. It was so uplifting to hear words of hope and progress at the symposium and so comforting to end my day at a coffee house that loves and values my neurotribe. We live in uncertain times. I am reassured when I see so many people working so hard toward so much good.

Rethinking Autism and "Picky Eating"

butterfly in a Planetbox bento lunch
Photo © Melissa | Flickr / Creative Commons
[image: Lunch box with each food type in a different compartment. Foods
include pretzels, jellybeans, raspberries, sliced cucumber, and
whole wheat sandwich bread in a butterfly cutout.] 


Seeking Sara
seekingsara174.wordpress.com

For as long as I can remember, I’ve been ashamed of what I do and don’t eat. The stigma of being a “picky eater” has followed me my whole life, bringing comments (and no small amount of exasperation) from family, friends, wait staff, and strangers.

I’ve recently been examining why I struggle with certain foods, and have come to the same conclusion as I have with much of my post-autism-diagnosis self-exploration: I’m actually incredibly strong, and my experiences are real and valid.

Why am I so “picky”? Well, if you could experience my senses for a few hours, I bet you’d be more understanding, less judgmental, and I’m fairly certain you’d stop using the word “picky” pretty quickly.

Often times, I want desperately to like a food, to be able to order anything at random, or to just eat whatever is put in front of me without hesitation. But for me, food is almost always a relentlessly overpowering experience.

It’s not just taste that’s overwhelming—so are texture, smell, color, consistency, and more. What if I told you certain foods literally hurt to eat? That some trigger vivid memories that are disorientating and distressing? That some foods make me nauseous and panicky? Throw in IBS, general stomach and digestive issues, multiple food allergies and sensitivities, and it’s actually pretty impressive that I eat at all.

Taste


I really struggle to eat bitter, sour, or spicy foods. Remember, all of my sensory input is dialed up and extra-sensitive, so what you consider overwhelming, is likely not the same as what I do. I’m not just being picky, and I’m not overreacting. I really am experiencing things more intensely than most people. What you might find pleasant with just a hint of a kick might feel like an absolute assault on my senses.

Also, my sensory input sometimes seems to go haywire and—for example—a bitter taste might register just like bile to me. No one else eating the same dish is having the problem, but I literally cannot eat another bite because it legitimately reminds me of throwing up.

Texture


Food texture is a huge factor as well. Texture no-gos for me include peaches, coleslaw, celery, Japanese konyaku, and warm peanut butter. I can’t really explain why some of these things are difficult for me, but the sensation of eating them can be so uncomfortable that my jaw locks up. This can be a full-body experience, causing pain, discomfort, chills, headaches, and tics if I’m truly required to eat something.

Too Many Tastes at Once 


Even if I like certain tastes, too many at once is also overwhelming. There are not many meals I order out that don’t include me saying, “I’d like the (meal), but without (list of ingredients). So basically just the (stuff I still want).” The things I take off make the difference between me being physically able to eat the dish, and literally not being able to eat it without melting down or extreme distress.

Conclusion


I debated making a list of all the foods I struggle to eat, but decided against it. Maybe some day I will, but for now, I still struggle with embarrassment from a lifetime of stigma related to what’s difficult or painful for me to eat—and I’ve decided to focus elsewhere.

I’m currently on a journey of self-acceptance and I’m finding it more productive to focus on my “Can Do” list than my “Can’t Do” list. I’ve come a long way in trying new foods, and I’m working on becoming more accepting that 1) I function differently and it’s okay not to eat foods that are difficult and 2) it’s actually impressive what I do eat, and I should give myself more credit.

Monday, September 24, 2018

On ABA: They hate you. Yes, you.

Amanda Forest Vivian
adeepercountry.blogspot.com

Content note: Includes discussion of discrimination and abuse by teachers and ABA practitioners, and a photo of a child in ABA therapy receiving an electric shock.

----

I always think about Danny, who was not really named Danny. It's too bad I can't use his real name because it's one of my favorite names. I'm sure he's forgotten me, but I can remember his name, his face, his favorite subway train, and the words he made up.

He was a kid I met this summer at the school where I interned. I have written about him several times, sometimes at length. And although he was my favorite kid at the school, that isn't why Danny is always surfacing in my mind, tiny in his big t-shirts, flinging himself around and reciting things.

It's through Danny that I found out for sure, this stuff is about me.

Because the first thing people use on us is always, "It's not about you." When I was a kid, when I first started reading about autism rights, it was so instinctive: of course it's wrong to say "cure autism now." Of course it's wrong to say autism is a tragedy, a disease, it's wrong to give kids electric shocks, it's wrong to say you thought about killing your kid in a video about eliminating autistic people from the gene pool. Like Sinclair says it's wrong to mourn for a living person. All this stuff was plain and clear and bright, and I was autistic, and I was being attacked.

Right?

Well, not to anyone else.

Because, of course, if I told anyone I was autistic, they said I was lying, or I had a different kind of autism that made me smart and talented, so I wasn't like Those Kids, the kids who needed to be cured. And that I should think about their parents, about the money and time to care for a person like that, about the dreams that are shattered when your kid is really autistic—not smart autistic, the real kind.

So in my late teens when I put myself through my paces, when I figured out my deficiencies and set myself to systematically eradicating them, one of the deficiencies I eradicated was my use of the word autistic. Because you shouldn't use words people don't understand. And you shouldn't use words that will make someone feel bad, someone who has a kid who's Really Bad, Really Disabled. Because you're not that.

And I met some autistic kids and they were not much like me, and I didn't know to apply what I knew about myself to them, because I couldn't see what they were feeling inside. But I liked them. Then I met some people with intellectual disabilities and I liked them too; after a brief nervousness because some of them looked so different from me, and made noises I didn't understand, it was easy to like them. They were people who liked things, some of them the same things I liked. I could see that they weren't on the surface very similar to me, but I liked being around them almost more because of that, because it made me feel happy and chastened to misjudge them again and again. To be proven wrong when I thought I could quantify them just because I knew more words.

So by this point, I was pretty much sold, even if I wasn't Really Autistic, on the idea that people with developmental disabilities matter. Because I was around them all the time and it was obvious they mattered. But still, I felt my position was that of an outsider, an ally. I had opinions, but I didn't necessarily feel that I had much right to talk about them; I didn't feel I had as much right as the parents or teachers of people with developmental disabilities.

And then I interned at this school.

And I started out thinking: wow, ABA is so cool. I've heard negative things about it from other Not Really Autistic people, but who am I to talk about what these Really Autistic kids need? They can't even talk. They might bite themselves or something. What the hell do I know about that?

And then I met Danny and the other kids in his class. High-functioning kids. Verbal kids.

Tony, who had been nonverbal a few years before, was incredibly hardworking and sweet. When he went into the school director's office and turned out the lights as a joke, I laughed, but she said, "Tony. Look at my face. How do you think that made me feel?" She stood there looking grim until he apologized.

James was stressed out and upset; one of his teachers leaned towards him, staring fiercely into his eyes, talking with cold, strained-sounding words, the kind of voice I called "static" when I was a kid. James looked scaredly back at her, wriggling his hands around in his lap. "James," she said. "I know you're upset. But what you're doing with your hands looks silly." This boy, all the tension in him being channeled into something harmless, something she had to look under the table to see. His tension was silly. His discomfort was an inconvenience. He was eight or nine years old.

And Danny with his words. "Danny's an interesting kid," the school director told me. "He likes to be in charge." Danny and I were walking, holding hands, and when I responded with concern when he told me he was tired, another teacher told me, "He's playing you." It's true that Danny was a bossy little boy; when we played restaurant, he replied, "No, we're out of that" again and again until I ordered the food he wanted to pretend to make.

And his love of subway trains spilled out everywhere. He was supposed to write a story about a sad princess, and he did, but half the story was about the princess's friends taking her on the subway to cheer her up. He was supposed to write a crossword puzzle and the clues were things like, "Transfer is available to _____ North." The school was full of subway maps, since many field trips involved subways, and Danny would sometimes just lean over a desk, pressing his face into the shapes and colors, whispering his favorite schedules to himself.

Danny just liked words. When he was using his special words, the weird words he scrounged for or made up himself, he would find himself jerkily hopping across the room, speaking in a squeaky voice, his small face tense with excitement. "Presentation" was a weird word for movie, "document" was a way to talk about the letter he had typed on the computer for his parents. "I went to the barber," he said when I commented on his newly short hair, and then, with a rush of joy, "!but I like to call it the hair shop!"

I like words too. It was hard to watch Danny's teachers nudge him, sit down with him, say, "Danny, the word 'presentation' is a little weird; you need to say 'movie.'" It was hard to watch the way they looked at him, pointedly, until he stilled his hopping and lowered his voice to a more standard pitch. When Danny found out my middle name is Wood, he completely tripped out on it, hammering pretend nails into my stomach and giggling, "I'm gonna build something out of you!" "Danny," a teacher said, "don't be weird. You and Amanda were talking about names."

It was the word 'weird.' Nothing foreign my whole life. Tracing words and shapes in the air, crossing myself, my mom asking me a lot of questions, "Have you been feeling the urge to do that lately? Why do you do that?" with so much static voice it was clear I'd better keep my hands as still as possible when she was around. Running jerkily up the stairs at school, I couldn't help myself until I was fifteen or sixteen, despite the older boys laughing to each other—"is she trying to race you?" Movement just consumed me that way. And being a thirteen-year-old who said "suppose" and "quite" when no other kids did. Just loving words too much, finding it hard to stay away from the strange ones. And getting too excited. Being weird is not that alien for me.

So my divisions broke down a little, because I was watching a kid just like me, and I was learning, in very specific, qualitative terms, what other people thought of people like me. I was so nervous about keeping myself still and using the right words because I thought they wouldn't let me intern there if they knew I was actually like Danny, that I didn't think he was weird at all. All of Danny's teachers had been taught to grimace and say how annoying it was when he talked about trains. They watched The Office, but they never ever laughed when Danny told flat, self-referential jokes on purpose, twisting the ones he had been trained to say. I thought Danny was funny. Every time I talked to him I felt nervous about doing something that his teachers would think was wrong, and I also felt bad about perpetuating the attitude he was being taught, that none of the things he loved mattered.

So from specific to general, from Danny to James and Tony, to Max and John. John's teacher made him walk, in stiff, clean steps, and if he started doing anything that looked like skipping or jumping, she grabbed his arm, said "No," forced him again and again. Max liked to move his arm in circles while he was watching TV, so he was hauled off into an office, pushed down into a chair, had mouthwash forced into his mouth while he cried. They told me they were narrowing it down, he was moving less and less. Max and John didn't talk. James and Tony didn't talk as well as I do. But I move too much, and I move wrong, especially when I was a kid, and in that school I saw what they do to kids who move wrong.

I realized that, actually, a lot of it was about moving wrong. Or talking wrong, if you could talk. Or just taking too much initiative--wanting to make up songs, like Danny did, or playing a practical joke, like Tony did. That these kids looked and acted different and the school wanted to control them and make them as still and docile as they could possibly be. Watching them treat hopping, rocking, and neologisms like you'd treat a bomb on an airplane--it was like being at summer camp with a kid from the south, sitting in a car uncomfortably while he said he'd kill a gay person if they ever came near him. Wanting to say, no, it's not anything important; I'm like that, see? But I didn't talk in the car, and I didn't talk in the school.

This is too long. It's hard to even explain it. I just have to say, for the millionth time, that this whole functioning level thing—yes, it matters in certain ways. I can buy and cook food for myself, while high-support autistic people probably can't. I can hide the way I move and talk better than other people can. But this doesn't really have much to do with politics, because when people claim that "cure autism now" and the disease model and the Judge Rotenberg Center are not about me, well I beg to differ. The only reason they're not about me is that I'm old and verbal enough to not be vulnerable to that kind of abuse. They would be all too happy to practice it on me if they could. Autistic people do not get abused because they are low-functioning, they get abused because they do weird things.

So, the old-school ABA trials? With Lovaas?

This is a kid getting an electric shock:

[image: Black-and-white photo of an autistic child
receiving an electric shock as part of ABA therapy.]

This is why:

[image: black-and-white photo of a child who is
stimming by holding their hand in front
of their face, and also toe-walking.]

If you were in the wrong place at the wrong time, the wrong age, the wrong functioning level, this could be your life.

This what people like them think about people like us.



This post was originally published at adeepercountry.blogspot.com.

Author's disclaimer: This is a nine-year-old post and when I wrote it, I didn’t have close Autistic friends or much familiarity with self-advocacy or disability rights, except from reading. I don’t disagree with anything I said, except the part about being able to cook, but I would say a few things differently.

1) I obviously can’t speak about all ABA therapists/techs or schools. I will share a story though! When I was first blogging and vlogging about my internship experience, I exchanged messages with an ABA therapist who agreed that the school I interned at was doing certain things wrong, and recommended a better ABA school for me to intern at.

It was the same school.

2) I once read a thread of Autistic people discussing this post on a forum, where people criticized the post for speaking about the staff at the school as a monolith. But I want to clarify that—at least at this school, but I gather at ABA schools in general—they were a monolith by nature. All the teachers and staff had to follow the behavior plan which targeted the child’s “behaviors,” like stimming, neologisms, skipping, etc. and outlined how the child was supposed to be punished for doing those things. Teachers or staff weren't allowed to act in a way that deviated from this. So this is one case where saying “the staff did such-and-such” is not a generalization but just correct.