No Textbook Definition

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Photo by Loide Marwanga.

June 2009, Orlando, FL

“Disney World: Where Dreams Come True.” I lean forward from the back seat of the crowded car to snap a picture of the sign. I am ecstatic. I haven’t been to Disney World since I was ten. My friend, Emma, whose entire six-person family is testing the recommended capacity of the compact SUV they have rented, flashes me a smile from the adjoining seat, but her smile fades quickly. For me, wistful for my childhood visits, Disney World remains “the most magical place on earth.” For her, it has lost some of its allure. Her family has come here for vacation every year since she can remember. It is one of the only places on earth her family can visit that can accommodate her twin autistic brothers. Realizing this, I settle back in the seat. I don’t know whether to mimic Emma’s indifference. She knows I don’t understand, and my empathy would seem too artificial.

November 2009, Yale Campus, New Haven, CT

Each of the students in Yale’s “Psych 350: Autism and Related Disorders” class invariably has a personal reason for taking it. Many have prior experience with autistic people, oftentimes siblings. The professors do not hide the fact that priority is given to “students with personal interests,” as the class website declares. Since the class is limited to 15-20 students, the application process is very competitive. Currently an estimated 1 in 150 children in the United States is born with an autism spectrum disorder. In recent years, more and more children have been diagnosed with autism. It is debatable whether the rate of autism is actually increasing in this country or whether doctors have been doing a better job of identifying it. Regardless, as the prevalence of autism has spread, the class has become more and more popular. Katie Sexton, a senior in the class, tells me that her main motivation for taking the class is her desire to become a lawyer specializing in child advocacy. In this position, she would specialize in helping families deal with the complications that result from having a special needs child.

Some, however, have very different motivations. Dr. James McPartland, one of the three professors who teaches Psych 350, theorizes, “College is an especially social time, and here we are learning about a group of people who are born” with a difficulties in processing social information.

I could personally recognize the appeal of a class that explains the seemingly inexplicable. Throughout my entire friendship with Emma, I never grasped what autism was. Emma never sat down and explained her brothers’ disorder to me. I don’t think she would have known how to.

Outwardly, I feigned an intimate knowledge of her situation, trying to be as supportive of her as possible. But personally, I felt my ignorance about autism created a barrier between us.

January 2009, Chicago, IL

Emma and I stand in line at our high school’s cafeteria, trying to grab a quick lunch in the twenty minutes we have between classes. The line inches along slowly, and we are both already irritated. A freshman shoves her way through the crowd to join a boy standing in front of us. She chats with him glibly, clearly intending to cut us in line. I consider exercising my seniority and relegating her to the end of the line, but it is not worth the fight. Plus, the boy is trying to coax her into leaving anyhow. Emma and I eavesdrop on their argument.

“Seriously, there are seniors behind us. You’ve gotta go to the back.”

“Who are you? The line police? Just let me order with you.”

“I don’t think…I don’t…umm…know,” he stutters.

“Are you autistic? Can’t you put a sentence together?”

Without looking at Emma, I tap the freshman girl on the shoulder. “Not okay. Get to the back of the fucking line.”

Emma says nothing. When we finally load up and pay for our food, thread our way to a table, and sit down, she quietly whispers, “Bitch…”

November 2009, Yale Child Study Center, New Haven, CT

Grappling with and understanding autism often requires a balance between the deeply personal and the coldly clinical. Each week, the Psych 350 class features a different guest lecturer. The speaker today is Alison Singer, who introduces herself as the mother of an autistic child and the sister of an autistic brother. She is also deeply invested in supporting autism research. Last year, she founded the Autism Science Foundation, whose mission is to support autism research by funding scientists either searching for the genetic source of autism or investigating safe and novel treatments for autistic children. Singer easily convinces me that her cause is noble, and, more importantly, central to dealing with the disease.

As it turns out, we know next to nothing about autism. Even the definition of autism spectrum disorder in the Diagnostic and Statistical Manual (DSM), the gold standard of psychiatric diagnosis, is vague. Rather than precisely defining autism, the DSM offers 12 criteria for the diagnosis of autism. Some of the signs of autism might be impairment of social interaction (like not being able to make eye contact), delay in development of spoken language, repetitive motor mannerisms (like hand flapping), and resistance to change. In order to be diagnosed with autism, a child must meet a certain number of criteria in certain combinations, but the disease is still variable in its manifestations and deeply individualized; each diagnosis and treatment will depend upon the specific child. Yet, somehow scientists must search for an overarching theme that will allow them to develop new treatments that will help the autistic community as a whole.

As I leave the lecture, I feel a little disappointed. I now know some of the science behind autism — its manifestations, its diagnosis, its treatments. But none of this seems relevant to Emma or her brothers. Abstract explanations have not provided me with the revelation I am seeking. But I quickly remember what one of the professors told me before the class. “You can’t really understand what autism is like if you don’t interact with people with autism,” Dr. McPartland explains. “You can only learn so much from the textbook.” He goes on to quote his colleague, professor Dr. Ami Klin, Director of the Autism Program at Yale: “Our best hypotheses come from the playroom.”

November 2009, a bus traveling between Yale Campus and Chapel Haven, CT

Katie and I pass our stop, and we’re forced to retrace our steps through the streets of a somewhat-sketchy New Haven neighborhood. As we do, Katie elaborates on what her teachers have said about the importance of the experience she is having outside of the classroom: “A lot of times when you are taking a psych or science-based course, it is hard to remember that you are studying real people.” The teaching in the classroom, she explains, takes a much more theoretical and scientific approach. But when you work individually with people with Asperger’s syndrome or autism, you get the opportunity to see how the disorder is specific to the individual. When I ask how the two aspects of the class interact, she tells me, “The class guides what I look for or expect [in the practicum], but I don’t want to pigeonhole people.”

Once we reach Chapel Haven, I learn that Katie is justified in her resistance to making any generalizations about autism or Asperger’s. Though all the young adults we see that night at Chapel Haven are between the ages of eighteen and twenty-three and have all been diagnosed with Asperger’s, no two residents are the same.

The residents at Chapel Haven have a very regimented schedule. During the day, they attend classes. Usually, these classes are in the form of one-on-one academic workshops. Their nighttime schedule is more relaxed, but they are still expected to make themselves dinner and clean their rooms. The apartments they live in are all identical — living room, kitchen, and two bedrooms shared by two people. Katie and I ring the doorbell of one of the apartments on the first floor.

An 18-year-old wearing a checkered jacket with a hood, black sweat pants, and tennis shoes greets us at the door and invites us in. He heads into the kitchen, apologizing that his roommate is sick with the flu, joking, “You’ve got to be careful when you inhale at Yale.” As he cooks two cheeseburgers on his George Foreman Grill, he continues to crack jokes to us, some of which he has memorized from Abbot and Costello routines, some of which he has made up on his own. He talks incessantly. Within an hour, he has shared his passions with us — zoology, Star Wars, making pumpkin bread at his family’s Thanksgiving meals, and singing. He swings back and forth as he recalls for me the dates of all the Mets games he has been to and the scores of each. He is not a baseball fan though. He just “watches over the shoulder” of his brother. He shows me his daily schedule, pointing out that he takes tae kwon do.

He is completely open, switching between sharing random tidbits of information with us and talking lovingly about his family at home. “Marvin Gaye’s father shot him,” he says at one point, matter-of-factly. Later on, he tells us that his little sister has Down’s syndrome. “I wouldn’t have her any other way.”

After hearing one final dirty Thanksgiving joke, we depart from the first apartment and walk up the stairs to a room on the second floor. “Do you guys like horror?” another 18-year-old in jeans and square-rimmed glasses asks us as he pulls us into his room. He brings up a video game called “Fatal Frame” on his XBOX 360. His roommate enters the room and quickly leaves, saying this game gives him nightmares. In the game, a girl exploring what I gathered to be some sort of haunted house in Japan must take pictures of the ghosts she encounters before they choke her. Somehow, the photograph seems to suck the life out of the poltergeists. The eerie game matches the theme of the room, still decorated from Halloween. Paper links of orange and black hang all across the ceiling, and origami bats hang from the chains. Though he has never been to Japan, the boy’s passion for Japanese culture is apparent. Absorbed in his game, he does not speak often, but, upon probing, we find out that he loves sushi, too.

Soon someone from the staff knocks on their door, interrupting the video game to supervise cleaning. One roommate takes out the trash as the other does the dishes. In the front room, we talk. “If he had gone to my high school,” Katie tells me, gesturing to the boy in jeans and glasses as he puts the salmon he made himself for dinner in a Tupperwear container, “I would have never known he has Asperger’s.” I compare the reserved but calm boy in the kitchen here in front of us with the more talkative and energetic boy downstairs. One is friendly and well-spoken but reserved. The other appears perhaps overly eager for social interaction. They seem polar opposites, yet they have the same diagnosis of autism spectrum disorder. The range of the disorder becomes suddenly and blatantly apparent.

I think of Emma’s twin brothers. Andrew is best described as an extrovert; he is the biggest cheerleader at our basketball games. Austin, on the other hand, is completely non-verbal. And both Austin and Andrew differ from the boys at Chapel Haven. The disease affects them all very differently. Each of their personalities and behaviors are distinct — that’s what makes them individuals.

Katie tells me that the disorders vary even more widely between the Chapel Haven residents and those students with autism who attend the Benhaven School where some of the other Psych 350 students have their practicum. Benhaven School is for younger, and usually lower-functioning kids with autism. The Yale students in the class who work there had the option of going through aggression training before working with the kids. The people we meet at Chapel Haven exhibit no such aggression. Prior to my visits, Dr. McPartland had explained to me that it was this discrepancy between manifestations of the same spectrum of disorders that got him interested in autism research in the first place. “I was studying psychology in college, and I worked over the summer at a school for kids with developmental disabilities. I was just intrigued by the way that I would see all these kids affixed with the same diagnostic label, and they were so different,” he tells me. He recounts his memories in what strikes me initially as a straight-forward and clinical manner. “There were some kids who wouldn’t even look at me and just sit in the corner and flap their hands. There was another kid who would come up to me and ask to read books to me. I was really curious about how a disorder could affect the brain and result in so many different phenotypes. How could a disorder affect the brain and leave a kid with so many skills and yet unable to make eye contact with me or have a conversation? Things that are so core to most of us can be so hard for people who are autistic.” McPartland seems at first to approach autism from a completely scientific perspective. He currently studies brainwave functions with EEG technology. But his inspiration to pursue a career in such a technical field stems from extremely personal interactions with autistic children, and, even as a scientist, the personal remains central to his work today. Later, he tells me, of himself and his colleagues at the Child Study Center, “Many weeks we spend more time working for the families of children with autism than we do with our own families.”

May 2009, Northbrook, IL

“You ready?” I hold my finger on the stopwatch. “Go!” One of the athletes, David, starts running. About 200 yards in he slows down, wandering from the track towards the soccer field.

“Keep going. You’ve got it,” Emma yells from the finish line. David immediately refocuses his attention on Emma. He makes it to the end of the track. It is the weekend and Emma and I have been helping out at a Special Olympics event at one of the only Chicago-area schools that caters to children with special needs. Families who can afford its steep tuition can enroll their autistic children into this program for a specialized education. One of the families in our neighborhood has enrolled their child at this school; every day, they put their daughter, Sophie, on a bus which then drives an hour and a half away to the school. Sometimes, with traffic, the bus ride is much longer. It takes Emma and me three hours to drive home from the school in the Sunday traffic. Emma’s brothers don’t attend this school. The family can’t afford it. Instead, Emma’s mother has moved with her brothers, Austin and Andrew, to the suburbs so that the boys can go to a public school which is supposedly equipped to accommodate them. While the family tries this alternative, Emma will stay at our high school. Emma can only see her mom every other weekend. After her bus commute, Sophie only sees her family a few hours a day.

November 2009, Yale Campus, New Haven, CT

Chapel Haven offers full care and therapy. In the cab on the way back to Yale, Katie tells me that sending an autistic child to Chapel Haven is a lot like sending a child to college. The facility offers a full multi-year educational program with room and board. Therefore, the expense of Chapel Haven is comparable to that of college — not counting the added expense of therapy. Our cab driver, when he hears our conversation, chimes in to tell us that he has two autistic grandsons. They are going to school in Bridgeport rather than in New Haven because New Haven’s educational options for people with autism are so limited.

Chicago’s schools pose a similar problem as to those of New Haven. It is nearly impossible to educate an autistic child in the city. As a result, families are often torn apart. Emma has played hundreds of basketball games throughout her middle and high school career, and Emma’s mom, living miles outside the city, has only ever been to two games.

June 2009, Orlando, FL

We are waiting in line for the Buzz Lightyear ride. The heat is blistering, and, under its blaze, family bickering sparks. All around us, parents are glaring and hissing at one another as they struggle to contain their sweaty, hyperactive children. One kid stands out. He is particularly wild. Emma’s dad — we all call him “Coach” — cannot help but notice the child. He excitedly approaches the family.

“Is your child autistic, too?” He asks, before launching into his own introduction, his own story. “I have two autistic sons, Austin and Andrew…” It takes a while before he realizes that the parents he has approached are staring at him, insulted. He stops, mid-sentence. He turns around and walks back to our group, shaking his head.

“Nope,” he says to us. We laugh with him to cover the discomfort of the situation. He grins, but the grin isn’t genuine. He’s not even embarrassed. He’s just disappointed.

November 2009, Yale Campus, New Haven, CT

Back in the Psych 350 classroom, Singer gives her entire presentation on the hardships parents must undergo when they have an autistic child. When a child is first diagnosed with autism, she explains, parents often have a hard time accepting the situation. She tells us that in a study done in Tel Aviv earlier this year scientists discovered that “a lot of stress [that parents of autistic children undergo] is because of a lack of resolution in the diagnosis.” There is no cure for autism, so parents who learn their child is autistic must come to terms with the fact that they will deal with their child’s disability for the rest of their lives. Most parents come to accept the situation within four years of the diagnosis. Some do not. The adaptations and compromises required are severe. Often, at least one parent must sacrifice his or her career because the child needs constant supervision and someone to organize all the continuing therapy. This loss of income, compounded with the financial cost of special education and therapy (currently only fifteen states in America provide insurance for evidence-based therapy) creates stress within the family. This stress in turn compromises parenting abilities.

Additional stress originates from society’s misconceptions about autism. Singer relates to us that, at the grocery store, her daughter often likes to pull all the cereal boxes down from shelves and replace them. Singer suffers through much abuse for this simple behavioral faux pas. “You’d be surprised how nasty people are,” she tells the class. “Their first inclination is that I’m just a bad mom.” Rarely does it occur to her fellow shoppers that her daughter has a behavioral disorder. Singer, visibly stressed by the judgment of her peers, calls the situation “embarrassing.” She expresses to us how such incidents only increase the sense of isolation parents of autistic children feel.

Alison Singer filled her lecture with deeply personal anecdotes. In every aspect of this class it has become more and more apparent to me that scientific research about autism cannot occur in a vacuum. It must go hand and hand with the personal. The science outlines how we ought to deal with autism. But ultimately each individual is affected by the disorder differently, so each treatment is essentially personal. The one cannot exist without the other. The revelation did not solve my problem as to whether or not I should feign indifference toward Disney World. I will never be able to completely comprehend Emma’s situation. But I did realize that spending time with her brothers is the best way to try and understand.

December 2007, Somewhere between Chicago and Lisle, IL

Emma has offered to give me a ride to our Christmas basketball tournament. Despite having spent every day with her for the past four months playing basketball, I have not met her family, aside from her father. I have never met—have never even seen—her mother. She never comes to school events or the games, unlike the other parents. And I don’t understand why she doesn’t live with Emma and her father since I know that Emma’s parents are neither separated nor divorced. I open the car door and scoot next to a grinning, red-headed boy. “This is my brother, Andrew,” Emma says, turning around from the front passenger’s seat. I hadn’t even known that she had a brother. It would be months before I found out Andrew had a twin. After me, several other girls from the team join us in the car as Emma’s father stops at their homes. During the hour-long car ride, we play Catchphrase. We get to the sports category, and Andrew guesses every team with lightening speed. “Andrew,” Emma says, “tell me some Cubs’ stats.” He rattles them off, only to be interrupted by Emma’s father asking Andrew what exit he should take off the highway. Andrew ticks off for him not only the name of the exit, but also the name of every street and every turn we will need to take to get to our destination from the exit.

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