April is National Autism Awareness Month
METAIRIE, La. (AP) — Benjamin Alexander cannot speak, but he is determined to be heard. He cannot type without a hand to support his, and yet he writes and writes, his inner voice shouting out his thoughts. He returns repeatedly to the “fiend” that tried to silence him, the autism he sarcastically calls his “gift.”
“Who in the hell gave me this gift?” he once wrote. “Please, take it back.”
Ben is a junior at Tulane University, an English major with a 3.7 GPA and a computer full of essays, one of them published in a local journal and another on the university’s news site. He wants to help educate people about autism and challenge stereotypes. That’s not easy because he still needs some assistance when he types, leading some to doubt him over the years.
On a recent evening, Ben’s father settles him at the keyboard and rests his hand under his son’s arm. He lightly squeezes Ben’s forearm, a subtle move that sets him into action. Ben begins to punch the keys with one finger.
“I . am . not . stupid . as . some . people . used . to . think,” Ben types. He unwraps his arm from his dad’s and hits the period by himself, causing the computer to read each word in a robotic voice that he doesn’t really like, but needs. Later he adds, “I want people to know I am here.”
Others on the autism spectrum have remarkable achievements, but Ben has far surpassed expectations. It started at age 8 with simple one-word responses that blossomed. By the time he was 10, one of his first essays — “My Adventure in Life” — won a state writing prize in Louisiana.
He’s 22 now, and his writing is an outlet for strong opinions, anger, pride in his accomplishments, and a longing for so much more.
“My life began when I began to type to communicate,” he wrote in that early piece. “I can now tell you my story.”
As the sun rises over the leafy streets of suburban New Orleans, Ben’s parents, both surgeons, start their day well before he does. They joke that they haven’t slept in 20 years because of their son’s erratic sleep habits and their own demanding schedules.
This particular morning, Ellen Schneider enters her son’s room, adorned to the ceiling with tributes to his beloved New Orleans Saints football team, and rouses him for his day on campus. “Come on, B-man.” She leads him to the bathroom to use an electric toothbrush. “Oooh, you’re gorgeous,” she says, as she looks into his wide hazel eyes and wipes his bearded face with a towel.
Ben is not tall, but he’s strong. His mother, slight in build, is no longer as able to steer him physically when he gets distressed. So his father accompanies him at Tulane and other public places.
This morning, Ben is calm, having taken his medication — pills for everything from epileptic seizures to anxiety. He eats sliced apples and bread for breakfast while laughing to himself or babbling: “Aw aw, mm mm, bip bip.” The soft sounds seem involuntary in some moments, self-soothing in others.
This daily existence, with its many ups and downs, has tested the resolve of his success-minded parents, both age 55. His mother is an ophthalmologist, his father an obstetrician. They also have two daughters, Hillary, 25, and Lexi, 15.
“We cure things with our hands. We cut it out. If it’s something that needs to be removed, we remove it,” his dad, Sam Alexander, says. But with Ben’s condition, “we couldn’t do that.”
Even so, they refused early on to accept the idea that their son would never amount to much.
“Ben, we’re going to fix this,” his mom remembers saying to her young son as she watched him squirm in frustration.
When Ben was born, there was no indication that anything was wrong. Family videos show a smiley, chubby-cheeked boy with curly red hair just beginning to form words. “Hello,” he seems to utter in one video, after picking up an old telephone receiver.
In the months that followed, however, Ben lost those first few words. He stopped looking people in the eye. His parents often would find him off in a corner spinning around and around.
Doctors initially told them to be patient, that it wasn’t unusual for some kids to have delayed speech. But then, when Ben was about 2 1/2, came the diagnosis they feared: autism. Often called pervasive developmental disorder, it was accompanied by epileptic episodes, which worsened in adolescence, as did his erratic behavior.
“I guess using the word ‘autism’ just had such a horrible, horrible connotation,” his dad says. “It felt like he died.”
Ben never spoke again.
As a child, he started running away. He once took off from his grandparents’ house, past sprawling live oaks and thick brush to the edge of Interstate 10, where his frantic father found him and scooped him up.
Ben later wrote that running was his attempt “to escape from autism.”
Though advised to keep their expectations low, his parents stayed up nights surfing the internet for help. They took him from specialist to specialist, to Miami, Boston and Chicago, and tried any number of recommended therapies.
As a preschooler, Ben balked at “applied behavioral analysis,” in which participants on the autism spectrum are rewarded for repeating tasks — arranging blocks in a requested pattern, for instance. For Ben, the reward was often Goldfish crackers. “I hate f—ing Goldfish,” he wrote in one essay, using salty language that appears frequently in his written work and conversation. He felt like an animal in training.
Eventually, he saw Dr. Stanley Greenspan. The Maryland child psychiatrist used a technique called “floortime,” which allowed Ben the independence he craved. He could initiate the activity with his parents or therapists, who would play problem-solving games with him on the floor.
In his writing, Ben recalls how the doctor in blue jeans and Birkenstocks encouraged him: “It does not matter how fast you get there, so long as you get there.”
Ben’s parents say they sensed his abilities early.
As a child, he used a book his mom made, pointing to photos of the zoo, the park and other places he wanted to go. He learned letters at preschool and at another school his parents helped found for students with autism.
His parents read to him constantly. They didn’t know he’d also been scouring books around the house, including his older sister’s math texts and even the massive “Physicians’ Desk Reference,” from which he memorized names of some drugs and their uses.
Ben’s parents had heard that a nonverbal boy in India was writing poetry about his autism, and they wondered: What if Ben could communicate that way? So they tried facilitated communication, a controversial method where another person supports the typing hand of a nonverbal autistic person to help him “speak” using a computer.
One afternoon, dad asked 8-year-old Ben a question.
“Who is the president of the United States?”
“G-e-o-r-g-e-w-b-u-s-h,” Ben typed on a portable keyboard, according to his father, who supported his typing hand. “You’re not going to believe what your son just did,” Sam Alexander told his wife in a call.
These days, dad often only needs to hold Ben’s forearm loosely when he types, or he places his flat hand atop his son’s wrist to steady him in moments of higher anxiety.
Ben has “motor planning problems,” as his parents describe it, meaning that his brain knows what to do, but the connection between the knowing and the execution has somehow been lost. For some reason, they say, human touch and verbal prompting help bridge that connection. When typing, he appears to be directing his own finger to particular keys. His eyes alternate from keys to screen. He often sees and fixes his mistakes, though his parents also point out errors.
Because Ben needed more physical support early on, some people didn’t believe he was typing his own thoughts. His parents say they included the administrators at the private school he attended. So he switched to a public school, where special education teacher Judy Nodurft took on his case.
She, too, had doubts initially. She’d heard of cases where well-meaning parents directed their children’s typing, an oft-repeated criticism of facilitated communication. Nodurft received training for supported typing at an institute at Syracuse University in New York and, after working with Ben, became a believer.
At first, he gave her a difficult time.
“You need to go,” a defiant Ben typed to Nodurft in a video filmed by his mom during a session to prepare him for third grade.
“I’m not going now,” Nodurft said, calmly but firmly. Over the years, “Miss Judy,” as she is known, became both a second mother and a taskmaster.
“You were hard,” Ben typed recently when Nodurft visited his home. She chuckled.
The work with Nodurft began to pay off. By the time Ben was 10, his “Adventure in Life” essay, compiled from his answers to his mom’s questions about what his autism felt like, brought him that state writing honor.
Who are you? Why do you spin? Why won’t you look at me sometimes?
In simple words — and with mom telling him what didn’t make sense or pointing out spelling and punctuation errors — Ben told readers how he needed to be by himself to think and how looking into her eyes was often difficult for him, even “painful.”
Even so, he wrote, “I can not wait to start living.”
Today, Ben is living the life of a college student. After breakfast, he reclines on the couch to watch TV until his father returns from a morning surgery to take over and his mom heads to her own practice. It’s nearly time for Ben to take a test in music history. Dad puts on and ties his son’s shoes, and they head to Tulane.
In his classes, Ben sits with his dad at his side, often in a back corner with easy access to an exit. Sometimes, his father places his hand over Ben’s mouth to quiet him, or nudges him to participate in a discussion. Should Ben have an occasional outburst or simply get loud enough to be distracting, his dad walks him out of the room for a few minutes to calm down.
More often Ben is engaged in class, clicking the laptop mouse so the computer voice announces, “Speak!” when he has a question or comment, his way of raising his hand.
During a screenwriting class this semester, he contributes to a discussion on the movie “The Social Network.”
“I loved it because I found it ironic that a guy who was socially inept started a social network,” Ben says through his laptop voice, as the instructor nods in agreement. The young man who doesn’t speak also offers his thoughts on writing dialogue and keeping it conversational.
Dr. Paul Lipkin, director of the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, says as few as 10 percent of people on the autism spectrum have no real language, and most of those tend to have low intellectual abilities.
And though many experts point to studies debunking facilitated communication, Lipkin is less skeptical, even if Ben seems “really rare.”
“As physicians,” he says, “we never say never.”
Ben is the first person with nonverbal autism to attend Tulane, and administrators and professors say they’ve never had reason to doubt his abilities. As the Americans with Disabilities Act has required greater access to higher education, the university, like many others, has found ways to accommodate more students with special needs.
The university’s accessibility office arranged meetings to introduce Ben and his father to each new professor. But assistant director Shawna Foose, who’s gotten to know Ben well, says that’s about it. “He doesn’t want to be seen as a freak or a fraud,” she says.
Thomas Beller, an associate professor of creative writing who’s had Ben in class, says he, too, quickly bypassed the “exoticism” of Ben’s condition to judge him on the merits of his work.
“Sometimes, he’s not that interesting, which itself is interesting,” Beller says. He means that Ben’s writing is often good but also a work in progress. There, too, he is like any other student.
“I don’t want to grade him on a curve as the autistic guy.”
As a writer, Ben is focused, spending many hours over a week’s time to finish an essay, his dad says. He brainstorms ideas with his father, but ultimately, Sam Alexander says, the writing is his son’s. Adds mom, laughing: “Ben’s writing is way better than Sam’s ever was.”
Ben uses predictive word processing software that allows him to choose from a list of words after typing a few letters. Sometimes he writes fiction, such as a short story set at the time of Hurricane Katrina, and he is talking about a novel. Essays are his favorite form, though. Over the years, his writing has become more sophisticated — and raw. One piece, published last year, grew from a speech Ben wrote for his bar mitzvah.
“I was pissed at God. I still am. I let everybody at my bar mitzvah know about those feelings, as the fire and brimstone emanated from my computer. The rabbi had told me to tone it down beforehand; I could not use that type of language in the synagogue. I didn’t care.”
This year, at his father’s suggestion, Ben wrote about a remarkable meeting — and a transformative conversation. Using his voice simulator, he spoke to one of his heroes, Steve Gleason, a former Saints player who now has amyotrophic lateral sclerosis, or ALS, and also speaks with the help of a computer.
They began with a humorous exchange, detailed in Ben’s piece:
“‘Where are you from, Ben?’ asked Steve.”
“‘I am from New Orleans. … Can’t you tell by my accent?'”
The conversation turned serious when Ben shared his anger, asking: “Can you tell me how you stay so positive? How do you deal with frustration? How do you make your computer scream?”
Gleason replied that he’d found purpose by helping others with a foundation he and his wife formed.
“No matter what a person believes about God or fate or destiny, I think there is an inherent search for meaning and purpose inside most humans,” Gleason typed. “So, I try to think about what opportunity I can find within the seemingly tragic circumstances we may be experiencing.”
Dad remembers the ride home after that conversation. Ben was more pensive than usual. It appeared that Gleason had gotten through to him.
The resulting article, published on Tulane’s “New Wave” news site, drew an email thank-you from Ben’s freshman writing professor, who was mentioned in the piece.
“It was not your responsibility to teach me about disability, but you did, and I am grateful for it,” wrote Anne-Marie Womack, a post-doctoral fellow in Tulane’s English department.
Some students also responded. Recognizing Ben from the article’s photo, Owen Richfield greeted him on campus. “There are so many people who can speak out loud but who can’t find their voice,” Richfield said later, “and the fact that he has found his voice . he really has a gift.”
Ben can communicate, yes. But he wants more — to go to class by himself, to play on a sports team or to have a friend pick him up for a party and get drunk together. He wishes he could date one of the female classmates he admires from afar.
This desire to connect runs deep. One of his best friends, Heather Held, recalls a seventh-grade assignment in which they were asked to write about themselves in the future.
“Ben wrote that in 20 years, he had found a cure for autism, grown his hair out, and written a book about it,” Held says. “At one of the book signings, we reconnected and fell in love. In his story, we got married and had three kids.
“It was one of the sweetest things that I had ever read.”
She says she only wants this confidence published if Ben gives his OK, which he does. And that is no small thing. Ben can be reluctant to show vulnerability.
“This Ben is a very sensitive person,” he types during an interview, then stares intently for a moment. He often does that when his computer is reading his words. It’s as if he is making sure you understand — and believe — that the words are truly his. Those who know him best say Ben decides very quickly if he trusts you. And if he doesn’t, good luck.
There are many days when Ben still feels thwarted by his behavior. People see him flapping or grabbing and they distance themselves, sometimes out of fear, he says.
“For other people, actions and mannerisms openly display their confidence. …. I have no idea if my laptop displays confidence, but it sure has helped me to combat the ravages brought to me by this insidious gift,” he wrote in an essay.
A phrase he uses a lot sums up his feelings: “Autism sucks.”
Often, though, he thinks back to his conversation with Gleason, who assured him it was normal to question the meaning of his life. Ben was amazed.
“I have only dreamed about being normal. This normal is a vision of me speaking through my own mouth, not requiring an aid in school, or even being able to take care of myself with the routine daily tasks. Unfortunately, my normal is autism and the question is why?”
Gleason told Ben that he could be an example for other people with autism. Ben, in his interview, says he knows that’s true.
“I am not the autism poster boy. But I hope that people will . allow us to be heard.”
Ben’s Gleason story: http://goo.gl/fDusi3