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'I am here' - Silenced by autism, young man finds his voice

METAIRIE, La. (AP) - Though he cannot speak, Benjamin Alexander has much to say, one typed word at a time.

Ben was diagnosed with nonverbal autism and epilepsy a few months before his third birthday. Now 22, he is a writer and a student at Tulane University in New Orleans with a GPA of 3.7. In his essays, he returns repeatedly to the "fiend" that tried to silence him, the condition he sarcastically calls his "gift."

"Who in the hell gave me this gift?" he wrote in one piece published in a local online journal. "Please, take it back."

Ben wants to help educate people about autism and challenge stereotypes. That's not easy because he still needs some assistance using a computer to communicate, and that's caused 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."

___

As the sun rises over the leafy streets of suburban New Orleans, 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.

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."

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.

"It felt like he died," dad says.

Ben never spoke again.

Though advised to keep their expectations low, his parents took him from specialist to specialist, to Miami, Boston and Chicago, and tried any number of recommended therapies.

Eventually, Ben saw Dr. Stanley Greenspan. The Maryland child psychiatrist used a technique called "floortime," where Ben played problem-solving games on the floor with his therapists or parents.

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."

Early on in their battle with autism, Ben's parents heard that a nonverbal boy in India was writing poetry about his condition, 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.

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.

For some reason, his parents say, human touch and verbal prompting help bridge the connection between what Ben's brain wants to do, and the actual execution. 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.

"You were hard," Ben typed recently when Nodurft visited his home. She chuckled.

By the time Ben was 9, he wrote an essay - "My Adventure in Life" - that won a state writing honor. It was compiled from his answers to his mom's questions about what his autism felt like.

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. In his classes at Tulane, he 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. Ben clicks his 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.

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.

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. 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.

"I don't want to grade him on a curve as the autistic guy," Beller says.

Writing takes Ben many hours. He 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.

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.

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.

He also assured Ben that it was normal to question the meaning of his life. Ben was amazed.

"I have only dreamed about being normal," he wrote in the piece, published on Tulane's news site.

Gleason also 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

___

Martha Irvine, an AP national writer, can be reached at mirvine@ap.org or http://twitter.com/irvineap

In this Wednesday, March 2, 2016 photo, Sam Alexander, Ben Alexander's father, assists Ben during a math language class at Tulane University in New Orleans. Ben Alexander, 22, has nonverbal autism, a condition that became apparent when he was 2 years old. He has found his voice through writing using what is known as “facilitated communication,” a method in which another person supports the hand of the autistic person so he or she can communicate through typing. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 2, 2016 photo, Sam Alexander and Ellen Schneider help their son, Ben, cross a street on their way to lunch in New Orleans. When Alexander was about 2 1/2 he was diagnosed with autism. Often called pervasive developmental disorder, it was accompanied by epileptic episodes, which worsened in adolescence, as did some of his erratic behavior. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 2, 2016 photo, Sam Alexander and Ellen Schneider assist their son, Ben, during lunch in New Orleans. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 2, 2016 photo, Ben Alexander watches television at his home in Metairie, La. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 2, 2016 photo, Sam Alexander, left, assists his son, Ben, down a flight of stairs at their home in Metairie, La. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 2, 2016 photo, Sam Alexander drives his son, Ben, back home following a class at Tulane University in New Orleans. Alexander, who has nonverbal autism, is a junior at Tulane, 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. (AP Photo/Jonathan Bachman) The Associated Press
In this Dec. 1, 2015 photo provided by family friend Mark Berger, Ben Alexander, right, types messages during a conversation at the New Orleans home of one of his heroes, Steve Gleason, left. Gleason, a former member of the New Orleans Saints football team, has amyotrophic lateral sclerosis (ALS) and also speaks with the help of a computer. Ben wrote a story about their meeting. (AP Photo/Mark Berger) The Associated Press
In this undated photo provided by his family, Ben Alexander, left, runs in a half-marathon race with his father, Sam Alexander, center, near their home in Metairie, La. Alexander, who is nonverbal and autistic, is now a student at Tulane University. Though he cannot speak, he types to communicate with the world. Ben used to run in races regularly but has since lost interest in the activity. (Marathonfoto via Alexander-Schneider Family via AP) The Associated Press
In this Nov. 2, 2014 photo provided by his family, Ben Alexander poses for a photo with his sisters, Hillary, right, and Lexi, center, at their home in Metairie, La. Alexander, who is nonverbal and autistic, is now a student at Tulane University. Though he cannot speak, he uses his writing to communicate with the world. (Alexander-Schneider Family via AP) The Associated Press
In this May 11, 2013 photo provided by the family, Ellen Schneider helps her son, Ben Alexander, prepare for his high school graduation in Metairie, La. Alexander, who is nonverbal and autistic, is now a student at Tulane University. Though he cannot speak, he uses his writing to communicate with the world. (Alexander-Schneider Family via AP) The Associated Press
In this March 22, 2012 photo provided by his family, Benjamin Alexander, right, and one of his best friends, Heather Held, left, pose for a photo during a high school field trip in Baton Rouge, La. Alexander, who is nonverbal and autistic, is now a student at Tulane University. When he and Held were in seventh grade, he wrote a story about his future, hoping that he would find a cure for autism and marry her. "It was one of the sweetest things I had ever read," Held now says. (Alexander-Schneider Family via AP) The Associated Press
In this Wednesday, March 2, 2016 photo, Ben Alexander is greeted by family friend Terry Weaver and her 3-year-old retriever named Bogey in New Orleans. At left are his mother, Ellen Schneider, and father, Sam Alexander. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 2, 2016 photo, Sam Alexander ties the shoe lace of his son, Ben, on their way to a class at Tulane University in New Orleans. Ben, who has nonverbal autism, is a junior at Tulane, 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. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 2, 2016 photo, Sam Alexander walks with his son, Ben, to calm him down following an outburst during a class for screenwriting at Tulane University in New Orleans. Ben is the first person with nonverbal autism to attend Tulane. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 2, 2016 photo, Sam Alexander holds his son, Ben, during a class for screenwriting at Tulane University in New Orleans. In his classes, Ben, who has nonverbal autism, 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 he 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. (AP Photo/Jonathan Bachman) The Associated Press
In this Thursday, March 3, 2016 photo, Ben Alexander's mother, Ellen Schneider, washes his face at their home in Metairie, La. (AP Photo/Jonathan Bachman) The Associated Press
In this Thursday, March 3, 2016 photo, Ben Alexander and his father Sam, left, listen to a story on Ben's computer in preparation for an exam in Metairie, La. (AP Photo/Jonathan Bachman) The Associated Press
In this Thursday, March 3, 2016 photo, Ellen Schneider hands her son, Ben Alexander, a glass of water after he took some medication at their home in Metairie, La. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 2, 2016 photo, Ellen Schneider holds a cell phone as her son, Ben Alexander, uses it to type short messages to her during lunch on the campus of Tulane University in New Orleans. Alexander is the first student with nonverbal autism to attend the university and experts say his accomplishments are very rare. Research has found that as few as 1 in 10 people on the autism spectrum have no meaningful language. (AP Photo/Martha Irvine) The Associated Press
In this Wednesday, March 2, 2016 photo, Judy Nodurft, the former head of special education in Ben Alexander's old school district, talks to him at his house in Metairie, La. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 3, 2016 photo, Judy Nodurft, former head of special education in Ben Alexander's old school district, holds a cell phone as he types an answer to a question during an interview at his home in Metairie, La. Alexander cannot speak, but he is determined to be heard. He cannot type without a hand to support his own, and yet he writes and writes, his inner voice shouting out his thoughts. (AP Photo/Jonathan Bachman) The Associated Press
In this Wednesday, March 2, 2016 photo, Ben Alexander looks out the window of his bedroom after he, with the help of his father, Sam, finished part of a school project at their home in Metairie, La. Alexander, who has nonverbal autism, is a junior at Tulane University and although he cannot speak he is determined to be heard. As a writer, he is focused, spending many hours over a week’s time to finish an essay, his dad says. (AP Photo/Jonathan Bachman) The Associated Press
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