Podcasts

Woman Around Town’s Editor Charlene Giannetti and writers for the website talk with the women and men making news in New York, Washington, D.C., and other cities around the world. Thanks to Ian Herman for his wonderful piano introduction.

Amalia Starr

A Label is Not a Person: Autism and Newton’s Cradle

09/14/2016

Autism

This is a story about something called “autism” and an extraordinary piece of theater inspired by the question of how medical diagnoses can determine the way someone is treated, how he thinks of himself, and by what methods he navigates life. Though the play deals with someone on the autistic spectrum, one might easily insert depression, ADD, OCD, or any number of other identifications.

In 1943, child psychiatrist Leo Kanner coined the term “infantile autism” to designate 11 children who shared cognitive impairment, lack of social instinct, and resistance to change. Subsequently, pediatrician Hans Asberger wrote an article describing the same condition which wasn’t brought to international attention until 40 years later. For decades people were overlooked and/or denied help due to the narrowness of early identification.

“If you’ve met one person with autism, you’ve met one person with autism” Dr. Stephen Shore

books-1

Book Jackets

Autism has its roots in early brain development most often manifesting itself when someone is between 12 and 18 months old. It can, however, go unrecognized until adulthood. Highly functional autistics may not look for help unless they have psychological or social issues.

Twenty years ago, the “spectrum,” an evolving recognition of the many ways autism can present itself, hadn’t begun to be mapped. According to research about 40 percent of those diagnosed have intellectual disability and about 25 percent are nonverbal (which does not necessarily mean they can’t communicate). Others are so-called normal or have above average brain power. Even with exceptional abilities in specific areas, the autistic were once unceremoniously stigmatized and/or tolerated rather than given tools with which to grow to the best of their abilities with individuality, confidence, and pride.

“There tends to be a lot of autism around the tech centers… when you concentrate the geeks, you’re concentrating the autism genetics.” Temple Grandin

The Saunders Family Relates

For purposes of this article, admiration for, and curiosity about the theater piece Newton’s Cradle (2016 New York Musical Theater Festival), I interviewed Heath Saunders, Composer/Lyricist/Actor, his mother Kim Saunders, Librettist/Lyricist, and his brother, Trent Saunders, Actor.

Heath and his brother Trent are smart, sensitive, perceptive young men who can relate to the autistic spectrum with their own intimate histories. Fortunately, their mother Kim was not an alarmist. Like Audrey, the protagonist’s mother in Newton’s Cradle, she recognized her kids had unique ways of interpreting the world and endeavored to provide tools that would best help them manage and grow while celebrating their specialness.

Heath Saunders had been diagnosed with ADHD early on. His therapist during high school told him, “We have ancestors who are agricultural creatures, they plant and plan. Then there are the hunters who just want what they need, that’s the ADD brain. School is designed for agricultural brains, for planners,” he was told. Kim decided against formal appraisal and diagnosis.

The young student attended multiple schools, reading and testing extremely well, but not turning in the work. Once he understood something, he moved on. Music profoundly affects Heath’s life partially because “It takes the disparate parts of my head and makes order, a pattern. That part of Evan is very much straight out of my brain.” If I were Evan,/I’d want a pattern/I’d find a pattern./I wander, I wonder./A range of mountains./The rings of Saturn…Evan’s mother Audrey sings in the piece.

books-2-copy

Book Jackets

Also, like the character, Heath is touch sensitive. “It just wasn’t what I needed…I read a number of autistic writers talking about what touch was to them. Like them, I’m not neurotypical, but on a bridge. I was close to a number of people who also had social issues and looking back I thought, this spectrum is so wide.”

In 1992, Naoki Higashida wrote a book about his own autistic experience called The Reason I Jump – The Inner Voice of a Thirteen-Year-Old Boy with Autism. He’s now an advocate, author, and motivational speaker. In that book, he said, in part, that “for a person with autism, being touched by someone else means the toucher is exercising control over the person’s body, which not even the owner can control properly. It’s as if we lose who we think we are…There’s also the dread that by being touched, our thoughts will become visible…”

The Saunders were and are (in their second construct after divorce) an enlightened family of atypical artists. Heath’s mother, Kim Saunders, is both a respected consulting member of the Microsoft team and an accomplished Musical Director. Four of the five Saunders offspring are professional thespians. Trent Saunders acted the role of Michael, the protagonist’s brother in the iteration of the play I attended. Heath played the autistic Evan.

“From the time he was very young, it was clear Heath could problem solve in a way few other kids could,” Kim tells me. “His spirit and soul can take something someone else sees as a single point and are able to facet it so you can turn it around and look from different angles.” One has only to spend time with her son to glean the surprisingly equal and adroit nature of both sides of his brain.

Daily problem solving for ‘the rest of us’ includes ordinary decisions like determining what to wear or eat. There doesn’t have to be something wrong. Being able to assess a situation is paramount. If people are involved, we have some idea of how they’ll think or feel. This is difficult or impossible for those on the spectrum. Cause and motivation are often misconstrued. An autistic person might feel threatened. In the introduction to Higashida’s book, author and co-translator, David Mitchell calls the world of autism an “unedited, unfiltered, and scary-as-all-hell reality.” How does one achieve a sense of who one is with that perception?

Heath often interpreted identity questions in uncommon ways. Two of his mother’s otherwise liberal rules were 1. being forbidden to see PG13 movies until age 13 and 2. not being allowed to drink until 21 (legal drinking age in Seattle). “I was like, what happens when you turn those ages that suddenly makes it ok?!” Believing permission should be granted on a case by case basis, the boy drew a line in the sand that remained for years.

bros

Trent Saunders and Heath Saunders rehearsing (Photo by Walter McBride)

“There are so many labels you could try to stick on Heath that would fit in some way and would probably affect how people look and treat him. But putting him in a box would stop you from experiencing all that he is. That’s what I think allows him to connect so strongly with Evan.” Trent Saunders

Nor was Heath the only family member to identify with aspects of the play’s autistic hero. At age 5, Trent apparently went through “intense rages” in reaction to the divorce. Kim and Heath believe he became the emotional center of gravity for the entire family during that period, that he carried everyone’s pain and anger.  “Looking back now, I know how high my level of empathy was, but obviously at that age it wasn’t something of which I was very cognizant,” he says thoughtfully.

“I definitely understood the spin-out part of the experience and what it takes to calm a child who’s going through that,” Kim reflects. “There were times when all I could do was to literally, physically wrap myself around him with my arms and legs holding him in place.”

People on the autistic spectrum often feel events and react to people acutely. Sensory sensitivity is common. Communicating this is difficult as the ability to compose narratives is commonly impaired. Heath remembers simply avoiding Trent at those times. As Evan’s brother Michael says of the character in the play, “He spins all the time, just let him be.” Kim and both her sons are candid about the experience. When I inquire about my sharing it, they respectively agree with alacrity. “Families go through stuff, you know.”

“Think of it: a disability is usually defined in terms of what is missing. … But autism … is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique.” Paul Collins – Not Even Wrong: Adventures in Autism

unnamed

Heath Saunders leading the orchestra with Kim Saunders at the piano (Photo Northwest Photo Inc.)

Inspiration for Newton’s Cradle

Several years ago, Heath was hired to conduct at a children’s theater in Seattle, while his mother played piano in the pit. (The year before, roles had been reversed.) Kim helped her son put together his orchestra. It included an excellent woodwind player with whom she’d worked before. “He was likeable, quirky; about 20.” Separately, they use the same words to describe the musician. When the young man’s sister joined the pit, both Heath and Kim noticed curious interaction. The boy became submissive to his younger sister in the extreme. He’d always seemed completely capable.

Kim discreetly inquired and discovered, much to her surprise, the young man had been diagnosed as autistic. “How does that happen?” she thought. “How does somebody go from being profoundly impaired to being competent in the world?” She and Heath began to discuss the concept and separately do research. Kim started to outline a novel while Heath incorporated his ideas into the beginning of a song cycle.

“The question it raised to both of us was the idea of identity, labels and how things fit together. How did the diagnosis affect him? Did his parents do something special to create a world in which we never would have guessed his diagnosis? ” Heath wonders aloud. “What percentage of people on the spectrum might this apply to? How many people do I know on the spectrum without knowing they’re on it?”

mom-and-son

Kim Saunders and Heath Saunders (Photo by Zach deZon)

“One of the early songs I wrote was “On Falling Leaves” about observing patterns in something that ostensibly has no patterns,” Heath tells me: Look at the way the leaves behave:/ Seemingly random, each of them their own./And the wind is swift, and none of them shift alone./Look at the way the leaves behave/:/Moving in time and moving in the air/ There’s a pattern there… Kim’s novel and Heath’s songs began to parallel. They realized they could work together.

A plot was built around fictional characters, composites. “One of the things we learned early on is that there are similarities you can see, but every person is a whole, complete, unique entity,” Heath tells me. Evan is, as he says in the play, Evan. “We worked on the story 18 months before we had any scenes at all,” Kim recalls. It was of utmost importance to the authors to be as respectful and honest as possible, neither worshipful nor wearing rose colored glasses. Newton’s Cradle doesn’t sugarcoat a difficult diagnosis. “It’s a family drama, not an autistic musical,” Heath says.

The Play Itself

In the play, the Newton family has always revolved around Evan’s needs. We’re in the hero’s head as much we’re outside it, perceiving events as ever present even when long past. All episodes flow as if in real time, just as the boy experiences them. (It’s a tribute to Director Victoria Clark that we’re always able to tell the difference between past and present without staging gimmicks.) At the start, Evan and Michael are in their late 20s. Both have serious girlfriends. Michael’s girlfriend Chelsea didn’t know Evan existed until now. Evan’s girlfriend Charlie, was unaware he had a brother named Michael. Evan’s childhood memories ebb and flow.

michael-kushner

Andrea Jones Sojola as Evan’s mother Audrey and Heath Saunders as Evan (Photo by Mike Kushner)

“…memories are all scattershot and never connected in the right order. The trouble with scattered memories is that sometimes they replay themselves in my head as if they had only just taken place…” Naoki Higashida

Though he’s “passing” in the world for what society thinks of as normal, Evan has pronounced idiosyncrasies. In addition to skewed cognizance of time and touch issues he gets upset if things are not done just so. Many autists experience a kind of shut down when objects or events are not as expected or they think they’ve made mistakes. Routines introduce order and structure often helping one feel calmer. Reaction to change and surprise can be massively out of proportion.

The character’s father was convinced the boy must be watched at all times, that he’d never be able to take care of himself. His mother believed her son could do almost anything given patience and tools. She invented a series of recitations and puzzles to create focus.  In something Heath calls “the wonder scene,” young Evan tries to drop a glass of water and catch it. He fails. His mother asks him, “What if he let go of the glass and nothing spilled? Why would that be?” “It’s frozen!” he responds. “Good answer, but no.” “Evaporation?” “Wow, that’s another good idea, but nope.” “Somebody catches it before it falls?”…

“I’m a perfect teammate,” he repeats elsewhere like a mantra, “I’m everything I need.” These and other methods of focusing and calming are so inspired, I was surprised to learn they come from the librettist’s imagination.

dad

Heath Saunders as Evan and David Dewitt as his father (Photo by Mike Kushner)

“The way we look at our children and their limitations is precisely the way they will feel about themselves. We set the examples, and they learn by taking their cue from us.” Amalia Starr author of Raising Brandon: Creating a Path for Independence for your Adult “Kid” with Autism & Special Needs.

It turns out Tony Award winning actress Victoria Clark, who helmed this piece at The New York Musical Theater Festival in July, set out to be a director. Serendipitously, she  became a performer and is now seriously finding her way back to the craft by which she was first excited. (She continues to perform.)

Clark feels blessed to be involved with this project. She has a 10 year-old autistic neighbor. Rather than define their son by the word or categorize him as on the spectrum, his parents say he’s “having an issue” when things manifest. A friend’s brother is described by her not in terms of his struggle, but as being in the moment. “Autism is where anyone is on a given day. Every being deserves respect and to be heard like in “Blackbird.” (The tale of a blackbird from the forest who longs for the sea, this is the show’s final song.)

vic-in-rehearsal

Victoria Clark in rehearsal with Sara Brians, choreographer (Photo by Mike Kushner)

The mother of a son with whom she’s close, she was particularly intrigued by parenting challenges raised. “Familial interpersonal relationships fascinate me.” Clark did a great deal of reading on that aspect of the piece. Having been brought up with two brothers, the artist also connected with the show’s like dynamic. “Having the author act in the piece was compelling…he knew the play as creator but not performer. Only someone with a brain like his could’ve managed the multitasking involved…Even as first time authors, Heath and Kim have wisdom, the willingness to risk.”

Response to the play was not just enthusiastic, but personal. One audience member attended twice, bringing her 29 year-old autistic, adult nephew the second time. “He was like, how did you know this?!” Kim relates smiling. Feedback also came from those affected by friends and family members with emotional or mental disabilities. Michael’s experience touches people as much as Evan’s.

The play’s authors are looking forward to doing an autism-friendly version where sound and lights are adjusted to make it more accessible for those on the spectrum. We leave Newton’s Cradle uplifted, illuminated, entertained and rethinking the frequent use of labels. (It’s only a matter of time before the piece has another fuller life.)

4-1

The company of Newton’s Cradle (Photo by Mike Kushner)

My review of the play  Click to read.

Opening Photo of Heath Saunders as Evan Newton photo by Michael Kushner