The Practice Round(연습의 장)-
스무 살의 자폐인이 어른들의 세계로 들어갈 자리를 찾아나서다.
1980년 무렵부터 서서히 알려지던 '자폐증(Autism)'이라는 장애가 영화 'Rain Man'이 나오면서 본격적으로 대중에게 인식되기 시작한다.
그때 이후 진단을 받고 교육과 훈련을 통해 자라온 아이들이 본격적으로 사회에 진출할 때가 되면서 전세계적으로 새로운 움직임이 일어나고 있다.
뉴욕 타임즈에서는 자폐성 장애인들의 '사회 전환(Transition to Society)'를 주제로 연작을 구성해서 가사를 올리고 있다.
아래 기사는 '어른들의 세상에서 자리를 찾는 자폐인들'이라는 타이틀로 고등학교를 졸업한 후 사회로 진입하기 위한 준비와 연습을 하고 있는
'져스틴 캐너(Justin Canha)'군을 1년 동안 기자가 동반취재하면서 기록한 결과물이다.
고교 이후의 직업훈련과 사회적응 프로그램 받는 것, 그의 일상, 미국의 post secondary education의 단면,
부모의 시각과 그를 사회로 내보내는 것에 크게 공헌한 선생님의 시각 차이, 자폐성 장애 자녀의 아버지의 삶의 일편,
본인의 의견등을 사진과 비디오 자료들을 첨부해 feature로 만든 것인데 매우 귀중한 자료가 될 듯하다
The Practice Round: A year with Justin Canha, a young man with autism who is part of an new transition program to ready him for an independent life as an adult.
By AMY HARMON
Published: September 17, 2011
MONTCLAIR, N.J. — For weeks, Justin Canha, a high school student with autism, a love of cartoons and a gift for drawing, had rehearsed for the job interview at a local animation studio.
Multimedia
- Links to special features including short video conversations with Justin Canha
and links to his artwork and animation can be found throughout the article.
Fred R. Conrad/The New York Times
Tiny sketches of cartoon characters hint at the artistic potential of Justin Canha, 22. More Photos »
“Hello, everybody,” he announced, loud enough to be heard behind the company president’s door. “This is going to be my new job, and you are going to be my new friends.”
As the employees exchanged nervous glances that morning in January 2010, Ms. Stanton-Paule, the coordinator of a new kind of “transition to adulthood” program for special education students at Montclair High School, wondered if they were all in over their heads.
Justin, who barely spoke until he was 10, falls roughly in the middle of the spectrum of social impairments that characterize autism, which affects nearly one in 100 American children. He talks to himself in public, has had occasional angry outbursts, avoids eye contact and rarely deviates from his favorite subject, animation. His unabashed ｅxpression of emotion and quirky sense of humor endear him to teachers, therapists and relatives. Yet at 20, he had never made a true friend.
People with autism, whose unusual behaviors are believed to stem from variations in early brain development, typically disappear from public view after they leave school. As few as one in 10 hold even part-time jobs. Some live in state-supported group homes; even those who attend college often end up unemployed and isolated, living with parents.
But Justin is among the first generation of autistic youths who have benefited throughout childhood from more effective therapies and hard-won educational opportunities. And Ms. Stanton-Paule’s program here is based on the somewhat radical premise that with intensive coaching in the workplace and community — and some stretching by others to include them — students like Justin can achieve a level of lifelong independence that has eluded their predecessors.
“There’s a prevailing philosophy that certain people can never function in the community,” Ms. Stanton-Paule told skeptics. “I just don’t think that’s true.”
With some 200,000 autistic teenagers set to come of age in the United States over the next five years alone, little is known about their ability to participate fully in public life, or what it would take to accommodate them. Across the country, neighbors, employers, colleagues and strangers are warily interacting with young adults whose neurological condition many associate only with children.
Some advocates of “neurodiversity” call this the next civil rights frontier: society, they say, stands to benefit from accepting people whose brains work differently. Opening the workplace to people with autism could harness their sometimes-unusual talents, advocates say, while decreasing costs to families and taxpayers for daytime aides and health care and housing subsidies, estimated at more than $1 million over an adult lifetime.
But such efforts carry their own costs. In this New York City suburb, the school district considered scrapping Ms. Stanton-Paule’s program almost as soon as it began, to save money on the extra teaching assistants who accompanied students to internships, the bank, the gym, the grocery store. Businesses weighed the risks of hiring autistic students who might not automatically grasp standard rules of workplace behavior.
Oblivious to such debates, many autistic high school students are facing the adult world with elevated expectations of their own. Justin, who relied on a one-on-one aide in school, had by age 17 declared his intention to be a “famous animator-illustrator.” He also dreamed of living in his own apartment, a goal he seemed especially devoted to when, say, his mother asked him to walk the dog.
“I prefer I move to the apartment,” he would say, reluctantly setting aside the notebook he spent hours filling with tiny, precise replicas of every known animated character.
“I prefer I move to the apartment, too,” his father, Briant, a pharmaceutical company executive, replied on hard days.
Over the year that a New York Times reporter observed it, the transition program at Montclair High served as a kind of boot camp in community integration that might also be, for Justin, a last chance. Few such services are available after high school. And Justin was entitled to public education programs, by federal law, until only age 21.
Ms. Stanton-Paule had vowed to secure him a paid job before he left school — the best gauge, experts say, of whether a special needs student will maintain some autonomy later in life. She also hoped to help him forge the relationships, at work and beyond it, that form the basis of a full life.
But more prosaic lessons arose at every turn: when he should present money at the pizza place (not until after he ordered), how close to stand to the person using the weight machine he wanted at the gym (not so close), what to say when he saw a co-worker drinking a Coke (probably not “Coca-Cola is bad for your bones”). Often, Ms. Stanton-Paule and her staff seemed to spend as much time teaching the residents of Montclair about Justin as teaching him the tasks at hand.
Fred R. Conrad/The New York Times
Justin Canha, seated, with his parents, Maria Teresa and Briant Canha, and his brother, Julian. More Photos »
Fred R. Conrad/The New York Times
A job at a bakery, working under Ariel Tuck, is a step toward independence but a long way from Justin's dream job in animation. More Photos »
For his part, Justin sometimes flagged in his pursuit of autonomy. “When do I retire from this?” he asked of drills in phone etiquette. But he never stopped trying, sometimes warbling the theme song to his favorite movie, “Pinocchio,” as a means of soothing himself.
“When you wish upon a star,” he sang, “makes no difference who you are.”
“Pinocchio,” he informed anyone who asked, “is about a wooden puppet who was brought to life by a blue fairy and goes through mischief and mayhem so he can be approved to be a real boy.”
If he recognized himself in Pinocchio’s classic quest for acceptance, Justin did not say it in so many words.
Family That Won’t Take ‘No’
Justin’s adulthood had been looming for his parents, Briant and Maria Teresa Canha, ever since he was given his diagnosis in 1993 at age 3. Like many parents of autistic children before them, they wondered what would become of their son, who threw frequent tantrums, looked straight through them and did not answer to his name.
But some things were changing for the better. The explosion of research that followed the formal recognition of autism as a psychiatric diagnosis in 1980 underscored its biological basis, lifting some of the stigma that persisted through the 1970s, when bad mothering was often blamed for the condition’s mix of social impairments and circumscribed, repetitive behaviors.
And Justin’s parents were not alone. As the condition’s hallmark behaviors became better recognized, many children who were previously designated as mentally retarded or just dismissed as strange were being given an autism diagnosis, a trend that has continued. Some experts also believe that the actual number of people with autism has been climbing.
Even now, autism’s root causes remain unknown; many genetic and environmental factors are believed to contribute to its different forms and degrees of severity. Justin, for example, is unusually sensitive to noise; others are uncomfortable with light or touch. Some are physically aggressive, others withdrawn. About half score low on I.Q. tests, a handful are savants, and many, like Justin with his drawing, shine brightly in one particular area and stumble in others.
But emboldened by the growing understanding of what it means to be autistic, parents in the 1990s were increasingly demanding full access to education for their children and searching for ways to help them.
Many interventions the Canhas tried — gluten-free diets, neurofeedback therapy, high doses of vitamin B6 powder — made no apparent difference. A trip to Israel “to swim with those sweet bottle-nosed dolphins,” as Justin later described it, was a boon for a boy whose affection for animals contrasted with the indifference he showed people, but it yielded no breakthroughs.
Months of intensive language and cognitive therapy at age 4, however, did seem to help Justin, who learned a few words in sign language. To communicate with him, Justin’s brother, Julian, 18 months older, learned them, too.
If Briant occasionally raised an eyebrow at his wife’s tireless trial and error, he never held her back. He could not bring himself to have the third child she wanted, unwilling to risk another with autism. But the decision made the search all the more pressing: Julian, they knew, might one day be his brother’s sole caretaker.
The family had been living in Europe, where Briant had a promising career in international business and Maria Teresa, the daughter of a Brazilian diplomat, had embraced an expatriate lifestyle. There Justin found some comfort drawing characters from the Disney videos he watched incessantly; at 5, he littered the Canha home with hundreds of likenesses of Dumbo, Simba and a “Jungle Book” favorite, Baloo the Bear.
But when Justin was in first grade, near Munich, his tantrums became so frequent that he was often removed from the classroom. For months, he would eat only grilled cheese sandwiches. A generation earlier, his parents might have placed Justin in an institution. Instead, the Canhas returned to the United States in 1997 to look for better services. The realization that Justin was among the most severely impaired in the classroom set aside for children with autism in their new Florida school district was a blow to his mother, already battling depression. But with help from a new form of behavioral therapy that would prove to be one of the few effective interventions for some with the condition, Justin’s tantrums subsided.
With positive reinforcements for small tasks, Justin was coaxed by his therapists to answer questions like “what did you do today?” by drawing, providing a first glimpse of the confusion behind his outbursts, as well as his sense of humor.
The day a teacher at school took his markers away, he drew himself crying on a long, winding road home. After his father returned from a fishing trip, Justin drew a “bad dream”: his own body on a plate, a fish above him with knife and fork, ready to dig in. By the time the Canhas moved to be near family in Providence, R.I., Justin, 9, had taken the top award in a cartooning contest for students in kindergarten through 12th grade. His diet, still devoid of all vegetables, had expanded. He spoke a few short phrases.
And by the time Briant was offered a job in northern New Jersey a year later, Maria Teresa had learned of “inclusion,” a practice that allowed students with disabilities to participate fully in mainstream classes. Said to produce better academic outcomes for such students and instill compassion in their classmates, it held the chance for Justin, his mother believed, to learn the social language that was still so foreign to him.
It took a year to find a public school that would take Justin on those terms; over the 1990s, federal courts had ruled that districts must try to integrate students with disabilities, but gave them discretion. Three superintendents told his mother without even meeting Justin that they would bus him to a specialized private school.
But in Montclair, her plea to have her son educated in the community where she hoped he would one day work and live had been sounded by other parents just a year earlier. Having already trained teachers and adapted material so that six middle school children with other special needs could attend regular classes, there was no reason, the superintendent agreed, not to accommodate Justin.
A Celebrity, of Sorts, in School
The move to Montclair in 2002 took its toll on Justin, who clung to routine. In his high-pitched singsong, he ticked off to himself each place the Canhas had lived. “Five moves,” he said. “I hate it.” With a new cognitive behavior therapist, he practiced making eye contact and strategies to stanch the steady stream of “self-talking” that drew stares even as it soothed his anxiety.
Alone in his room, he filled composition books with a vast cast of miniature characters, drawing swiftly with a mechanical pencil that he sharpened after every two strokes. He learned the release date of every Disney film, its animators, its voiceover stars and whether it was “one of the best movies of all time” or “bombed at the box office,” both outcomes he proclaimed with relish. He memorized entire episodes of “The Simpsons” and “Family Guy.”
And with new computer software, he developed his own cartoon animations and a comic strip called “Jickey and Fanky” about a fox and a wolf that sometimes took on a decidedly personal twist. In “Jickey Goes to Behavior Therapy,” for instance, Dr. Fanky P. Wolf gets his eyes gouged out by his patient, Jickey, whom he is prodding to make eye contact.
When Maria Teresa probed his feelings, Justin brushed her off.
“Don’t be curious,” he told her in what became an oft-used refrain. “Don’t be interested.”
But at his new middle school, Justin’s autistic qualities earned him a kind of celebrity status. His classmates stifled smiles when he yelled “You’re fired!” at an unpopular teacher, and the novelty of his composition book served as a social bridge.
“I drew Baloo from ‘The Jungle Book,’ ” he would say to fellow students, opening to a page. “Do you like ‘The Simpsons’? What’s your favorite character?”
If he did not exactly have friends, he had admirers.
With simplified copies of school books and an aide to keep him focused, Justin participated in the same lessons as his peers, often using art to complete assignments. And when the Ricco Maresca gallery sold more than a dozen of his drawings for as much as $4,000 each at the Outsider Art Fair in Manhattan shortly after Justin entered high school, the Canhas allowed themselves the thought that he might one day support himself through his art.
The family paid for mentoring sessions with an art facilitator and arranged a tour of Pixar Animation Studios in California, where Justin informed the guide, “I am in heaven here.”
Julian, by phone from the University of Michigan, where he was attending college, voiced concern. “You’re investing so much in Justin’s art career,” he told his mother. “What if that doesn’t work out?”
But meeting regularly with Justin’s family, under the new requirements of a civil rights law called the Individuals With Disabilities in Education Act, school officials encouraged him to pursue independence. The term became a mantra of sorts for the Canhas. For Justin, like any adolescent, it seemed the key to freeing himself from his parents’ grip — and from the very activities designed to help him reach that goal.
“Mom, when is the last day of Dr. Selbst?” Justin asked on the weekly trips to the cognitive behavior therapist.
“Well, Justin, what’s the goal?” his mother asked. “Why do we go to Dr. Selbst?”
“Independence,” Justin sighed, turning on classical music on his iPod and settling in for the ride. At bustling Montclair High, where Justin wore giant ear protectors to block out hallway noise, he faced a less gentle side of inclusive education. A gym teacher threw him out when the murmur of his self-talking broke an order for “total silence.” His middle school fans shrugged him off when he approached with his composition book. “They’re busy,” Justin reported when his mother asked if he ever had lunch with classmates or wanted to invite anyone over. Some students purposely set off Justin’s emotional outbursts. “Kill Elmo,” they whispered, aware of his fascination with Internet videos portraying the demise of the popular “Sesame Street” character. “Why?” Justin would exclaim, sometimes loud enough to get sent to the principal’s office. “Why kill Elmo? Why?”
He still had trouble with basic math, and with understanding someone else’s point of view. His speech was halting, almost formal, and he never asked a reciprocal question in conversation except when prompted. He bristled at criticism, particularly of his artwork (“No opinions, please” was a Justinism his teachers knew well).
Yet by senior year, Justin had, in his way, assimilated. He had traded the earmuffs for discreet earplugs. He had railed against racism in a social justice class (“It’s not fair!”) and cultivated his skill in posing provocative questions that would get a rise out of classmates. “Why is it not OK,” he often wondered aloud of the adviser of the school cartoon club, “to say ‘Mr. Tucker is a sucker?’ ”
And sometimes, the rules bent his way. Justin’s aide braced herself when he raised his hand one day in a class that had focused for several months on Africa. The students had just finished reading a book on apartheid.
“Mr. Moore,” Justin complained, “I’m tired of learning about sad black people.”
The teacher, who was black, turned around.
“You know what, Justin?” he said. “Me too.”
Justin would walk with his classmates at graduation in June 2009. But at 19, he would be staying on for two years devoted to preparing for adult life. That spring, Ms. Stanton-Paule asked him to design a poster to present at a leadership conference for students with disabilities.
“If you could achieve anything, what would it be?” she challenged him.
He contemplated the outline she gave him: in a bubble at the top, he was to write his vision of the future. on steps leading to his goal, he would write his course of action.
On graduation day, he dressed in a cap and gown. As he paced in the overheated hallway, talking loudly to himself, his classmates calmed him. When they marched out on stage together, they made sure he took his place in line.
A Teacher’s Mission
Before Justin joined her program, Ms. Stanton-Paule drove her teaching assistants to a low-slung building near the high school known as a “sheltered workshop.” There, in a windowless room, people with autism and other developmental disabilities sorted colored combs and placed them in plastic bags. They were paid by the piece at sub-minimum wage rates, based on how fast they performed compared with the prevailing rate for nondisabled workers.
Some family members see such government-subsidized facilities as safe, productive alternatives to keeping disabled adults idle at home. Others criticize them as a form of segregation, where people cannot reach their potential.
To Ms. Stanton-Paule, the workshop represented one of the grim realities her students might face should they fail to find real jobs before leaving school. And for Justin, the stakes were particularly high. Post-high-school programs that have had some success in placing adults with disabilities like Down syndrome in rewarding jobs are often ill suited for those with autism, whose challenges center more on social and communication barriers than basic cognitive functioning.
“School is over when it’s over,” Ms. Stanton-Paule told her assistants. “And then it’s like, life.”
Like all of the nation’s public school districts, Montclair was required by federal law to provide some kind of transition program to prepare special education students to live independently. As in many schools, Montclair had traditionally assigned them to a classroom equipped with appliances, so they could practice skills like cooking and folding laundry. Some also worked in town a few hours a week. But in the fall of 2008, Ms. Stanton-Paule had moved nine such students out of the school building entirely and into the town. Individually supervised, they shopped for food, went to the gym and worked at the local businesses that provided internships in response to her combination of charm, persistence and offers of free labor. The approach, sometimes called “community-based instruction,” is widely viewed by educators as the best way to prepare special needs students to navigate real-life settings. But the federal government, which pays states extra for their education, does not require that school districts track which students are employed in the years after they leave school to determine the relative success of different transition programs.
And experts say few schools implement programs based fully in the community, which require a type of very public teaching for which there is little training.
“We’re asking teachers to get out of the classroom,” said Dan Baker, a pediatrics professor at the Robert Wood Johnson Medical School who was hired by New Jersey’s Education Department to promote the model to its own schools. “That is not necessarily in their comfort zone.”
Deceptively calm, with straight blond hair and an unflinching green gaze, Ms. Stanton-Paule, 49, had long championed the approach: a decade earlier she had found jobs for several special needs students who still worked in town, at a hair salon, at the library, at the Y.M.C.A. The same group of activist parents who had inspired the Canhas’ move to Montclair had requested that Ms. Stanton-Paule be hired back when their children reached high school, and another teacher, Leslie Wallace, quickly volunteered to be her co-director. The program, they argued, could serve even the students most severely affected by autism and other disabilities.
But others saw them as overly idealistic.
The vice provost at Montclair State University, for example, suggested at a meeting that it would not be in the best interest of Ms. Stanton-Paule’s students to audit college classes, even if the institution had resources to handle them. “This is a competitive environment,” she told the teacher.
And a year after she started the community-based program, Ms. Stanton-Paule was already clashing with administrators about whether they would assign enough teaching assistants, at a cost of about $20,000 per student, to continue it.
Regardless of the expense, some school officials were not convinced the program was right for students who needed so much help just to navigate high school. one student “was lost in the school building the other day,” a colleague pointed out. “Do you really think she’s going to be safe in the community, Kate?”
As for Justin, another colleague warned her, “The world can be a rough place.”
“People out there will help Justin,” insisted Ms. Stanton-Paule, who has a master’s degree in special education and rehabilitation psychology. “We’ll show them how.”
The Canhas were counting on it. Their quest for inclusive education had all been aimed at enabling Justin’s independence. But so far, the only place he went by himself was the volunteer job Ms. Stanton-Paule had set up at the Montclair Township Animal Shelter — where he excelled, as it turned out, at “socializing” stray cats.
“Please stand by us,” Justin’s mother pleaded in an e-mail to school administrators, who ultimately reinstated the program’s teaching assistants. “What we have achieved so far would be lost if Justin could not continue to be supported as he has been in Montclair.”
The morning he was to present his “Dream” poster at the statewide conference at a local college, Justin buzzed with excitement.
“O.K., Kate, when am I going to talk about my poster?” he demanded. Finally, he stood before a room filled with several dozen students, teachers and local television news reporters and held it up. on the lower steps of the poster, he had written “learn how to take the bus.” At the top, he had drawn himself at a drafting table, in a jacket and tie, with a red-brick apartment building. “Famous animator-illustrator” he had written, and, on the step marked 2014, “move to the apartment.”
In large blue letters, he had also written the word “Single.” “Marriage,” he said, drawing out his words in his exaggerated style, “is too comp-li-cat-ed.”
Ms. Stanton-Paule, listening, thought, “Don’t be so sure.”
Working Toward a Dream Job
It had taken months for Ms. Stanton-Paule to persuade Randy Rossilli, the president and founder of the start-up animation studio Nightstand Creations, to meet Justin.
“Call me next week,” Mr. Rossilli, whose company had won a regional Emmy for a children’s show, told her over the fall of 2009. Mr. Rossilli was impressed with Justin’s passion for a craft he loved himself. But his offer of a two-day-a-week unpaid internship was a business decision. The company was developing a property called “Tinosaurs.” There was no doubt that Justin could draw tiny, and he just might have the attention to detail it would take to learn animation. “We’ve got the same haircut,” Mr. Rossilli joked at the end of the meeting. “People might think you’re a better-looking version of me.”
“Yeah,” Justin agreed, unaware that he was teasing.
Mr. Rossilli smiled. Somehow, it made him all the happier to give Justin a chance.
Finding His Own Voice
Justin had long relied on his mother for direction, and few were more tenacious advocates. Maria Teresa and her husband had divided up their labor, relying on Briant’s job, which required frequent travel, for income, while she focused on their son. Even as Justin’s internship began at Nightstand, she was pressing his portfolio into the hands of an acquaintance at “Sesame Street.”
But as the snow melted in the spring of 2010, Justin began to develop what Ms. Wallace called “his own voice.” His teachers encouraged it.
Maria Teresa, for instance, encouraged Justin to pack his lunch.
“Do you want to buy lunch sometime?” Ms. Stanton-Paule asked Justin one morning. Several of the other students went to local restaurants during their breaks.
“I like to buy lunch, but Maria Teresa forbids me,” Justin replied in his formal way, exaggerating slightly for effect.
“Yeah, but whose life is it?” Ms. Stanton-Paule asked.
“Mine!” Justin said.
On another occasion, he complained about his after-school schedule, packed with therapy and social skills classes.
“Kate, I dislike Maria Teresa’s opinion sometimes,” he said. “I prefer to foil her plans.”
“Well, you need to tell her, Justin,” Ms. Stanton-Paule said. “You have to say, ‘I would rather do it at a different time.’ ”
Justin spoke his mind, too, in a cartooning class he was auditing at Montclair State University (Ms. Stanton-Paule quietly helped him enter through the college’s program for the gifted, avoiding the provost’s objections). one classmate credited Justin’s suggestion that she use Porky Pig in an illustration of swine flu with making her project funnier and improving her grade.
And if Nightstand was not the permanent job they had all hoped for, it was a work experience that could not have been replicated in school.
Justin’s teachers taught him to take the public bus to the office, first accompanying him and then spying from afar. Since he did not talk to himself when he listened to music, Ms. Stanton-Paule coached him to avoid drawing hostile looks by turning on his iPod.
Ms. Wallace advised him on his dress.
“You look like a geek, Justin,” she told him when he pulled his pants up too high one day.
“A geek!” Justin exclaimed, fascinated. “Why do I look like a geek?”
“Let your pants ride,” she said, and he pushed them down on his hips.
Most days, Justin remembered to greet his colleagues by name and to ask, “How was your weekend?” Next came a lesson in following up. How about, Ms. Stanton-Paule suggested, “Did you have a good time?”
Because Justin could be overwhelmed by verbal information, Ms. Stanton-Paule asked his co-worker and chief tutor, Javier Manzione, 30, to sit next to him with his computer and encouraged him to refocus Justin when necessary. “You’re not hurting his feelings,” she assured him.
Over the following weeks, Justin learned to animate an arm, to lip-sync a character’s voice and, perhaps just as importantly, to make small talk with colleagues. It helped that their interest in animation was as genuine as his.
One afternoon, Mr. Manzione heard Justin muttering lines from “Family Guy.” “Was that the episode they were on the couch throwing up in the living room?” he asked.
“Yes!” Justin answered, surprised. No one had ever interrupted his self-talking before except to tell him to stop. He completed every assignment he was given and was the only one to complain when a snow day forced the office to close. But when Justin came in for a morning entirely on his own, he yawned, used the bathroom several times and was unable to focus, Mr. Rossilli reported to Ms. Stanton-Paule. And small disruptions to routine threatened his growing social confidence. one Tuesday morning, for instance, he marched up the steps to the high school to meet Ms. Stanton-Paule before going to work, unaware that standardized tests were being given that day. Ignoring the man with a “volunteer” badge at an official-looking table near the entrance, he turned down the hall.
“Can I help you?” the man asked testily.
Oblivious to the subtle signals that carry so much social meaning — a tone of voice, a furrowed brow — Justin took the question literally. “I don’t need your help,” he said.
“Yes, you do,” the man replied, his voice rising. Justin, with his dark buzz cut and large backpack, appeared to be just another test-taker arriving late — and rude to boot. “Do you have ID?”
“I don’t have ID because I graduated,” Justin proclaimed proudly. “I’m here to see Kate Stanton-Paule.”
A guard hearing the ruckus advised him, not unkindly, to come back another time. But when Justin, outside, called Ms. Stanton-Paule’s cellphone, as she had taught him to do in emergencies, he grew confused by her voicemail and hung up.
“I am waiting patiently,” he informed a snowdrift.
For Ms. Stanton-Paule waiting inside, the episode was among the most nerve-racking in the program so far. Her boss, Dr. Keith Breiman, who supervised special education at the high school, was the one to spot Justin kicking the snow outside his window.
“Kate,” Dr. Breiman said, delivering him to the meeting room. “I believe Justin was looking for you.”
Practicing for Independence
When Ms. Stanton-Paule visited Florida with her family the following month, she received a message from Justin.
“Hello,” it said. “I wanted to talk to Kate about — how is, uh, how is — how is the day, in Florida? See you later!”
Weeks of cellphone practice had paid off. Later that month, when Justin’s parents drove to Michigan for Julian’s college graduation, leaving Justin alone for the first time, he promised to keep in touch by texting, his new preferred mode of communication. “Why are you interrupting my independence?” he asked his mother when she called from the road.
Less successful were the friendships Ms. Stanton-Paule had sought to foster with other students in the program. Fearing that Justin would not leave his room all weekend, the Canhas paid one of his teaching assistants to meet him at Starbucks. Told that they were to meet “for a drink,” Justin had his drink and immediately departed.
He was more interested in completing his latest “Tinosaur” sketch for Mr. Rossilli — a kind of “Where’s Waldo?” with dinosaurs. His first rendition had too much white space, Mr. Rossilli told him, a comment Justin took with a new humility.
“Randy gave me a feedback,” Justin told his co-worker, Mr. Manzione, and revised the drawing until Mr. Rossilli declared it perfect.
But Justin still needed more one-on-one training to become an animator than Nightstand could provide, and by the summer of 2010, Mr. Rossilli had signaled that the internship would need to end. The business was faltering, and he needed to lay off his last two employees.
The Canhas learned too, that the state’s Division of Developmental Disabilities, where Justin would apply for support after the transition program ended, had threatened major budget cuts. And in the fall, they were told, Ms. Wallace’s hours in the transition program would be cut in half.
At home, Briant and Maria Teresa’s voices rose as they discussed Justin’s future. None of Justin’s artwork had sold that year.
“Maybe ‘Sesame Street’ will come through,” Maria Teresa ventured.
“Let’s just deal with what’s in front of us,” Briant insisted.
“I don’t like the parents discussing in the background,” Justin told a visitor. “I prefer the apartment.”
The next month, he woke his mother in the night, crying. He had had a nightmare, about “parents’ death and my death,” he told her.
It was, his mother thought, the first time he had registered what it would mean to truly be on his own.
A Friend, at Last
In January 2010, Gower Nibley, another student with autism who had joined the transition program the previous fall, received a text on his cellphone from Justin. “My baloney has a first name, it’s H-O-M-E-R,” it read, the first line of a “Simpsons” takeoff on an iconic advertising jingle. Gower’s phone soon buzzed again: “My baloney has a second name,” this text said. “It’s H-O-M-E-R.” on his way to his internship at a nursing home, Gower, 20, let out a giggle.
The grin that spread across Justin’s face whenever he saw Gower was striking. And Ms. Stanton-Paule, who was struggling to convince Justin’s parents that this budding friendship was a priority, hastened to schedule time for the two to eat lunch together. She created “Plan an Activity” worksheets so that they would not stand each other up by accident when they intended to get together, as had already happened more than once.
But with just five months left in the program, a rare fissure had opened between the teacher and Justin’s parents. Maria Teresa insisted that Justin was spending too much time on activities that did not involve finding work. “Kate,” Maria Teresa had told her sharply in a voicemail, “you need to get on top of this!”
Over the summer of 2010, the Canhas had enrolled Justin in a cake-decorating course; if he could not immediately find employment in animation, a job at a bakery, they all agreed, would allow him to use his artistic talent. He would enjoy decorating cakes with cartoon characters, Justin told his teacher, “because it cheers people up.”
That September, Maria Teresa had peppered Ms. Stanton-Paule with suggestions of gourmet bakeries where Justin might intern. The voicemail followed when a few weeks passed and the busy teacher had not yet followed up on all her leads.
But by October, Ms. Stanton-Paule had prevailed on Gencarelli’s Bakery in nearby Bloomfield to train Justin to dip cookies. And at a tense meeting in January, she told the Canhas that Justin needed to spend time with fellow students, even taking time to attend a class she was teaching on relationships and sexuality.
Maria Teresa objected. How could they be sure Gencarelli’s would turn into a real job? Perhaps he should take an animation class at Montclair State.
Briant, jet-lagged from a trip, closed his eyes.
Ms. Stanton-Paule held her ground. “Justin’s social competence is going to be a huge gauge of whether he is accepted in the workplace,” she said. Beyond that, she thought, he simply needed a friend.
Gower, who liked classic Hanna-Barbera cartoons like “Scooby-Doo,” took Justin’s probing, often repetitive questions about animation with a seriousness that no one else did. (“Sadly, in 2006, William Barbera passed away,” Justin had informed his friend.)
“You know, Brooks,” Gower commented to a teaching assistant who was with them at the supermarket, “I think if there were ever a trivia contest about cartoons, Justin would win.”
“Thanks,” Justin said, looking sideways at Gower.
But Gower was considered higher-functioning than Justin. His interests included weather and geography, and he had a girlfriend. Fearing that Gower would tire of Justin’s single-minded focus, Ms. Stanton-Paule had urged Justin to broaden his discussion topics. But it was slow going.
At the meeting in January, Ms. Stanton-Paule finally turned to Justin: “Would you like to continue to make time for getting together with Gower?”
“Yes!” he exclaimed.
Maria Teresa began to cry. Of course she wanted her son to have a friend. It was just that the responsibility for Justin’s future was suddenly almost unbearable, she apologized. She wanted so desperately for him to live up to his promise.
“Kate,” she said, “what will we do without you?”
Her husband reached over and put his hand on her arm.
Going It Alone
One day as Justin dipped cookies in chocolate in the bakery, a baker bumped into a co-worker carrying a tub of custard.
“Oh, did I hit the bucket?” she exclaimed, her words slurring somewhat in her alarm. Justin, thinking she had used profanity to express frustration, rushed over. “It is not appropriate to curse at work,” he lectured her, proceeding to supply a lengthy list of alternatives. She might consider “fudge,” for instance, or “fiddlesticks.” “You’re right, Justin,” the woman said, though she explained through her laughter that she had not, in fact, cursed.
The report of the incident, by amused bakery employees, filled Ms. Stanton-Paule with unexpected joy. Justin had not needed her prompting to interact with his colleagues. And they had not needed her to decipher his quirks.
Ariel Tuck, 21, Justin’s supervisor, found herself enjoying his spontaneous off-key singing. Justin was not quite as fast as the other interns, Ms. Tuck told the bakery’s co-owner, but his work was neater. Justin was filling up entire racks of cookies now, 14 trays at a time. With each new assignment, she had learned to ask him to use the notepad Ms. Stanton-Paule had supplied; drawing the shapes helped him remember which cookies went with which color sprinkles.
Justin received his first paycheck, for $84, in March, shortly after the Valentine’s Day rush, where he learned to write with chocolate for the first time. For now, he would work two days a week, at minimum wage.
“Right now I am dipping cookies,” Justin told people. “Maybe someday I will decorate cakes.”
That winter his mother made time to arrange a visit for Justin with Paloma Kalish, a Manhattan teenager and fellow animation buff with a form of high-functioning autism who was, as Justin put it, “a big fan of me.”
Paloma had followed Justin’s art career on his Web site after meeting him once at an exhibit, and her mother had sought out Maria Teresa. When the two met at the Kalishes’ home, Justin drew Paloma’s favorite character, Tod the Fox, in a composition book she had bought as an homage to him. A few months later, both mothers drew back as Justin took Paloma’s hand after a visit to his solo exhibition at the gallery in Chelsea.
“Don’t be curious,” he told his mother when she asked about the pile of fox pictures he was collecting on his desk at home. “Don’t be interested.”
If there was a hint that something more than friendship could grow — perhaps with Justin’s adoption of vegetables into his diet, after watching Paloma eat a salad — their discussion seldom strayed from animation.
But one spring morning with Gower, Justin took a conversational leap. “I hate moving,” Justin confided on their walk in a local park, recounting the places and dates of his moves, as he had so often done for himself over the years. Gower told him that he, too, disliked moving.
The young men lay down in a field and looked up at the sky. Justin told Gower that he planned on saving money, and that he might get a cat when he moved to his own apartment.
“Once I move into the apartment I’m going to feel so relieved,” Justin said. Gower would be welcome to visit whenever he wanted.
Ms. Stanton-Paule visited the bakery once more before the transition program ended in June, just as Ms. Tuck — whom Justin enjoyed calling “my boss” — was showing him how to make cookies that looked like rolled-up diplomas and hats.
Another part-time job had come through for him too, stocking shelves at an art supply store. And this year, at least, he would have a state-financed job coach a few hours a week and $16,000 in aid for continued training in independent living skills like banking, shopping and cooking.
His teacher watched him for a while as he worked.
Finally, he turned around.
“What are you still doing here, Kate?” he asked, his trademark bluntness making her smile.
“I’m just watching, Justin,” she said. “Is it O.K.?”
“Oh, O.K.,” he said.
She stayed for a little longer. Then she slipped away, the glass door closing behind her.
http://www.nytimes.com/2011/09/24/us/readers-questions-about-autism.html?_r=1&ref=amyharmon
윗 링크는 기사가 나간 뒤 독자들로 부터 빗발치는 질문들을 조합해서 기자가 가상으로 만든 Q&A입니다.
참고하면 도움되실 겁니다.
http://video.nytimes.com/video/2011/09/17/us/100000000972826/the-practice-round.html
http://www.nytimes.com/2011/09/24/us/readers-questions-about-autism.html?_r=1&ref=amyharmon
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