Nonverbal communication

Autistic Man Breaks Through The Silence

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Please click the article link at the end of the post to view the original article with video -Ed

Watson Dollar went silent at age 2, then two decades later, he began to communicate with his mother, using an iPad.

JACKSON, Miss. — The last word Watson Dollar spoke before autism erased his ability to do so was “lights.”

The chubby cheeked toddler lay in his father’s arms as anesthesia, administered for an ear-tube surgery, dimmed his consciousness. Head lolling back, body going limp, Watson gazed at the fluorescent lamps above him, uttering the one-syllable noun.

Then he closed his eyes and never spoke again. That was 20 years ago.

In the two months between Halloween and Christmas of 1992, Watson had lost almost of all of his 150-word vocabulary along with an interest in the world.

His parents initially failed to notice the change, chalking up the subtle signs to stubbornness or fatigue or the ever-changing nature of a developing child.

By New Year’s, though, the difference was both inescapable and worrisome.

The smiling, inquisitive boy who’d sung and pranced around his house in Magee now sat sullen and withdrawn. He rarely spoke. Instead of saying “juice” or “outside,” Watson met his needs by tugging the nearest adult to the refrigerator or the backdoor.

Watson also stopped playing with his toys. He used to push little cars around the living room, making vroom-vroom sounds. Now he held the vehicles upside down and close to his face while silently fixating on the wheels he’d spin for hours with his tiny fingers.

By the time his pediatrician discovered fluid in his ears and recommended tubes, Watson was a different child. His parents, Pam and Donald Dollar, hoped the surgery would return him to his previous state.

“He can’t hear, that’s why this is happening,” Pam remembers the doctor saying. “As soon as we get those tubes in, everything will be fine.”

But the procedure changed nothing.

The Dollars got the dreaded diagnosis on May 17, 1993 — 10 days after his second birthday — autism — and took immediate action.

They bombarded Watson with therapy and enrolled him in Magnolia Speech School in Jackson. They enlisted the best doctors and attended the latest autism conferences. They did everything they could to loosen autism’s grip, but it wouldn’t let go.

Pam and Donald eventually accepted reality: The disorder had permanently severed communication in their only child and, in doing so, isolated him from the world. Watson was lost, and he wasn’t coming back.

His own mother often wondered, “Is he even in there?”

That question lingered two decades, until, on Nov. 11, 2011, Watson sent a postcard from the other side.

Watson awoke from sleep thirsty and plodded down the hall to the kitchen, where his mother had left a half-empty water bottle on the counter. He reached for it.

Still awake and sitting nearby, Pam quickly snatched the bottle. She was sick and didn’t want Watson to get her germs. He needed to get his own water instead.

Because she doubted he’d understand a verbal explanation, Pam grabbed the bottle and drank all its contents.

Watson became agitated and was headed toward a full-blown meltdown.

So Pam tried something she’d never before attempted. She grabbed her iPad and pulled up its keyboard, then typed, “Mom is sick, when someone is sick they have germs, germs can make you …”

Watson hesitated, then grabbed his mother’s hand and slowly typed the last word of her sentence: “sick.”

Pam couldn’t believe it. Watson not only understood, but he was able to respond — albeit slowly and while clutching her hand. Still, she wanted to see if he’d do it again.

“Mom’s water had …” she typed.

“Germs,” Watson finished.

“Mom doesn’t want Watson to get sick. OK?” she wrote.

“OK,” Watson replied.

A simple exchange by all accounts, but for Pam it was a breakthrough. This was the first conversation she’d ever had with her now full-grown son and the first tangible evidence that he was, indeed, “in there.”

She decided to press her luck.

“Is there anything else you want to tell me?” she asked out loud.

Watson grabbed her hand and typed the words she’d been waiting to hear his whole life: “I love you, Mom. Very much.”

And with that, Watson cracked a door between two worlds long ago severed by autism. That door would open again and again in the months that followed, each time revealing more of the young man who’d been trapped behind it for years.

Watson, it turns out, has been watching us all along.

His mind has cataloged a lifetime of memories that he now recalls for his mother and a few others with whom he’s comfortable enough to type. He remembers the way his preschool teachers physically restrained him and said he hated that school because of it.

“It was abuse,” he typed.

He remembers wanting to console his second-grade classmate after her father had died, but he didn’t know how. He felt sad and helpless. It still haunts him to this day.

He can name the kids who were mean to him in school, as well as those who showed him kindness.

He’s also capable of complex thoughts and is keenly aware of his disorder, as evidenced by this Dec. 13, 2011, conversation between him and his mother.

Pam: “Do you understand autism?”

Watson: “Yes, I live with it.”

Pam: “Yes, you do. You understand it better than anyone. Do you like autism?”

Watson: “No, it is hard to deal with. I wish I did not have it.”

Pam: “I know. Me too. It has to be very hard for you.”

Watson: “(I) try to really deal with my weird stuff, but it’s hard because so many things to deal with.”

Pam: “So what are the hardest things to deal with?”

Watson: “Sounds (are) too loud, and (I) can’t tell you things, like, God, I pray to get better.”

Pam: “You are getting better, every day. We can talk like we are now, and we weren’t able to do that until a month ago.”

Watson: “For a long time I wanted to talk to you, and now I can. That is great.”

Pam” Yes, it’s wonderful. I’ve wanted to talk to you for years, too. And now we can, so that means you’re getting better.”

Watson: “Really glad.”

Pam: “Me, too. Is there anything you think people need to know about autism?”

Watson: “For people (to) try to understand more. Then they will be nicer to people with autism.

Pam: “Do you remember when you got autism?”

Watson: “Yes, it was when I was 4.”

Pam: “No, it was when you were 2.”

Watson: “I don’t remember that.”

Pam: “You were talking and were very socially outgoing, and then you changed. Something happened, but we still don’t know what.”

Watson: “Really? What happened to me?”

Pam: “We still don’t know.”

People like Watson who have autism suffer deficits in social interaction, communication and adaptability.

Hallmark signs of the disorder include a lack of eye contact, limited or absent language, social awkwardness, repetitive behaviors like rocking or humming, and a fixation on a narrow set of interests.

An estimated one in 50 children has autism, and boys are four times more likely to get it than girls, according to the Centers for Disease Control and Prevention.

Some people with the disorder are considered high functioning and have the ability to talk and interact with the environment despite their differences. Others, like Watson, are labeled low functioning because they lack language and a means with which to connect to the world.

The disorder typically appears before a person’s second birthday but most likely is present from birth, according to the latest research.

Studies by doctors at the Marcus Autism Center in Atlanta reveal subtle, yet key, differences in early infancy that disrupt the entire developmental process.

Using eye-tracking technology, researchers found infants later diagnosed with autism don’t focus on the eyes when looking at a face. Instead, they look at the mouth, or they don’t look at the face at all.

That’s opposite of typically developing children who glean important social cues from maintaining eye contact with caregivers.

Researchers also found typical children enjoy connecting to others — the pleasure centers of their brain light up when they do. This joy motivates them to deepen their connections through communication.

Children with autism don’t get pleasure from connection and thus lose their motivation to communicate.

“The question isn’t ‘Why aren’t they using speech?’ We know why; it’s not rewarding to them,” said Gordon Ramsay, director of the Spoken Communication Laboratory at the Marcus Autism Center. “The question is ‘Why isn’t it rewarding?’ That’s really what we don’t understand.”

The answer lies somewhere inside the autistic brain, where mutations in any one of about 1,000 different genes disrupt normal synaptic firing, otherwise known as neural communication.

Everything we do — from talking to walking to slicing bread — requires neurons from different parts of the brain to share information, said Larry Young, director of Emory University’s Center for Translational Social Neuroscience.

When that free flow of information slows or stops, seemingly simple tasks become difficult or impossible.

Think of an orchestra. In a typical venue, you would hear each instrument playing together harmoniously. In an autistic venue, you would still hear each instrument but fail to integrate them into a coherent piece of music.

Watson’s parents say their son used to hear the full orchestra, as evidenced by video footage of the toddler interacting normally with peers and having simple back-and-forth dialogs. But for whatever reason, the instruments stopped harmonizing.

Roughly one in four children with autism experience what’s commonly called “regression,” Ramsay said. That means they lost skills that they’d already gained. The rest simply fail to develop those skills in the first place. No one yet understands why.

Either way, those on the autism spectrum experience the world as a confusing swirl of disjointed information. Those affected most severely likely give up trying to understand it, Young said, and they retreat into themselves and their narrow set of interests.

That appears to be the case for Watson, who spent most of the past two decades physically present but socially isolated.

Evident during a visit with Watson in his family’s living room this summer, the odd behavior of the young man obscures his inner world. While his parents chat with a reporter, Watson leans back in his recliner and stares at the ceiling while unintelligibly reciting the script of a favorite movie.

“Oh-oh-oh-um,” he says, his voice rising and falling with inflection. “Ahhhh! Du-sham-a-shish. Wee-eem, way-way-way. Woam.”

Sometimes he’ll shake his hands back and forth and look at them. Or he’ll flip through the pages of a Dr. Seuss book; he always carries one around.

Watson doesn’t acknowledge when the conversation turns to him and doesn’t respond to his name, which is mentioned numerous times during the course of the morning.

Only when someone directly engages him does Watson snap to attention. Then he’ll smile or follow a command. Otherwise, he seems lost, disconnected, on his own.

“What is your favorite Dr. Seuss book?”

His mom types the query on her iPad and summons Watson to read it.

Standing over her, he studies the screen and composes a reply. It takes him about one minute to type it: “Really? You yearn really (to) know?”

“Yes, I would love to know,” Pam types for the reporter. “Will you tell me?”

“Yes,” Watson types. Then he thinks for a moment. “Too hard to very much choose.”

After a few more rounds of questions, Watson starts to pace. His vocalizations become louder. He’s getting upset.

“What’s wrong?” Pam types.

“These incessant questions,” Watson replies. He sits down, and it’s clear the session has ended.

“Incessant.” Not a feeble-minded word.

For those who have known Watson the longest, his sudden communication comes as both a shock and a long-awaited chance to ask him their most burning questions.

Chaneka Roby has been Watson’s friend since first grade. She sat by him in all their elementary school classes and visited him daily when he later was placed in a separate special education room. She had always wondered whether he truly enjoyed her company or just tolerated her presence.

“That was my first question,” Roby said. “I asked him, ‘Do you like me?’ ”

Watson said yes.

Roby, who now attends Hinds Community College, discovered Watson could type after reading about it on his mother’s Facebook page. She got excited, and it wasn’t long before she found herself engaged in her own conversation with her childhood friend.

They swapped stories and shared memories. They also solved at least one mystery.

“I asked him why he bit my finger on the playground when we were in first grade,” Roby said. “I had always wondered about that. Why did he do it?”

It turns out Watson had been frustrated by Roby’s relentless urging that he go down the slide before he was ready. Eventually, he’d had enough of her prodding and bit her.

“To me, it’s amazing he can type a sentence,” Roby said. “It’s a mystery and a blessing. I wish we would have had this technology in junior high and high school.”

The first iPad hit the markets in April 2010. But while the device indeed boasts a handy keypad, typing itself has been around for decades.

So why didn’t Watson communicate on a computer or typewriter years ago?

And, furthermore, why can he type his thoughts but not speak them?

Once again, the answer lies within the brain.

Remember that disjointed orchestra?

The one where each instrument plays but can’t harmonize together?

It’s the same concept preventing Watson from meaningful speech.

The brain requires little coordination to emit a sound, to echo a word, or to recite from memory a script. “That’s like a short loop within one brain area,” Young said.

To arrange thoughts in a coherent structure and articulate them vocally requires a vast network of neurons to fire simultaneously.

Watson has the thoughts in one part of his brain, grammar in another and vocal ability and muscle movements in yet another. But none of them works together.

“It’s a miracle all these things can come together efficiently and timely to allow us to do all the things we can do as typical people,” Young said. “But if there’s a disruption in our genes that slows or impedes communication between neurons, you can throw the whole thing off in some way.”

Typing still requires some coordination, but not as much as talking or writing.

Watson needs only one finger and the sleek surface of an iPad to compose his thoughts.

Even then, he struggles. Watson initially found it easier to grab his mom’s hand and guide her outstretched finger to type words rather than extend his own. He doesn’t do that much anymore but still prefers to clutch her hand while he types with his own finger.

“Not understand how hard it is for me to really type,” he wrote.

That could explain why Watson never sought out a typewriter or computer at an early age. It’s also likely why he never initiates communication now. Someone else, usually his mother, always starts the dialog. Always.

Another reason involves the social impairment common among people with autism. Even those who can readily communicate often choose not to, said Alice Shillingsburg, director of the Marcus Autism Center’s Language and Learning Clinic.

“I work with kids who speak in full sentences but never ask you personal questions,” Shillingsburg said. “They never ask what your favorite cartoon is. That tends to be what stands out.”

Watson spends his days at home with his father while Pam heads the nonprofit Mississippi Parent Training and Information Center in Jackson.

The family lives on some 40 acres just east of Magee, where Watson and Don tend the yard, pick blueberries and go fishing.

The two are close despite their lack of communication. Like many sons, Watson doesn’t express himself as freely with his father as he does with his mother.

“We’ve tried,” Don said, referring to the iPad discussions. “It just doesn’t work with us.”

On a sunny morning in late June, the guys stroll from the house to a nearby blueberry bush. Don silently gathers the ripe fruit as Watson watches. When his father has a big handful, Watson leans his head back and opens his mouth like a baby bird. Don feeds him.

They do this several more times, until Watson has his fill, and stroll on.

When it gets too hot, father and son retreat into the one-story house where Watson grew up. Now towering over his parents at 6 feet, 3 inches, the young man disappears down the narrow hall and into his tiny bedroom.

A vast collection of Dr. Seuss books fills a floor-to-ceiling shelf and spills out into a waist-high pile near the door. Watson selects one of them and returns to the living room to watch cartoons in his recliner.

It’s a leisurely lifestyle, but one that bores the 22-year-old. While most of his peers, like Roby, are in college or working, Watson is stuck at home.

“(It’s) killing me to be by myself,” he types.

He’s lonely. He wants friends who understand him, and a job — as a “data entry person.”

His parents want that for him, too, and for the first time since his autism they feel it might be possible. But it will take time and patience, and he may never achieve full independence.

Nevertheless, life for Watson and his family has improved since he started communicating.

When Watson’s grandfather, Buddy Dollar, died in September, the family used the iPad to work through the grieving process. The young man had questions about death that likely would otherwise have gone unanswered.

His parents also recently discovered Watson’s belief in God and his desire to be baptized.

Pam recalled a recent car ride during which Watson became agitated in the backseat, rocking violently and making noises. She previously had no way of deciphering his behavior. Now she can pull over and get the iPad.

“What’s wrong?” she typed on this particular occasion.

“I want to go to Wal-Mart,” Watson replied. “You just passed it.”

Pam laughed at the memory before turning pensive. How many temper tantrums could have been avoided, she wondered, if they’d been able to communicate all along.

All the misunderstandings, all the guessing games, all the grief.

“He’s had a history of having a lot of behavioral problems,” Pam explained.

They got him into frequent trouble at school and landed him at Millcreek, a center for emotionally disturbed children.

Watson attended the psychiatric day program there for four years as an adolescent.

“It was the typical teenage rebellion,” Pam said, “but he couldn’t talk back, so he used his behavior.”

Watson’s breakthrough has raised a flurry of what-ifs, but it also has validated his parents’ decision to educate him despite his outward limitations. Years of schooling taught him how to both read and spell — two skills now vital to his communication.

If the Dollars have learned anything from this experience, Pam and Donald say, it’s to never limit someone’s potential.

“Presume competence,” Pam said. “Presume they’re absorbing everything. Expose them to the world, and never give up. He was 20 years old when his big breakthrough came. It can happen.”

http://www.usatoday.com/story/news/nation/2013/07/14/autistic-man-breaks-through-the-silence/2516527/

Finding His Voice In The World

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NONVERBAL TEEN WITH AUTISM SPEAKS WITH HELP OF ELECTRONIC DEVICE

Please click this link to view the video associated with this story: Man, 19, With Special Form Of Autism Finds New Way To Express Himself.

A nonverbal teen with autism has found his voice.

19-year-old Neal Katz has gone from not being able to speak to being able to translate his thoughts through an electronic device, as he demonstrates in the CBS video above. Katz is now able to perform tasks such as order in a restaurant and go to the grocery store.

Katz’s mother, Elaine Hall, said that her son was turned down from nearly every camp because his disabilities were too severe until Shalom Institute, a Jewish overnight camp in Malibu, accepted him.

“I work here in Malibu every Thursday,” Katz told CBS through his machine. “I plant trees, pick fruits… put down drip irrigation.”

Hall said that her son’s electronic device, as well as the workers at the Shalom Institute, have helped him express himself and learn through interaction with nature.

Katz has recently been offered a full-time job at an organic farm.

“He loves it. It’s given him so much pride. They pay him. He saves his money. He’s so proud of who he is and what he’s become as a result of the Shalom Institute,” Hall said.

http://www.huffingtonpost.com/2013/06/06/nonverbal-teen-autism-speaks_n_3398657.html?utm_hp_ref=autism

Bringing Autism Awareness To College

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INCOMING STUDENT DEDICATED TO EDUCATING PEOPLE ABOUT AUTISM

Nick Lombardi, an incoming freshman class of 2017, will continue his dedication to helping others understand autism here at Manhattanville. Since a young age, Lombardi has worked to spread understanding and knowledge about autism to the larger community.

Growing up Lombardi’s younger brother Joey was diagnosed with non-verbal autism. Since the young age of five years old, Lombardi was always trying to watch out for his younger brother. Autism has often been called the “invisible diagnosis”, people with the condition have no outward appearance, yet are unable to function on a day to day basis. In an effort to end the misunderstanding, Lombardi created a pin stating “I’m not misbehaving I have autism, please be understanding”.

“My thought was if I was able to give Joey a way of letting others know he was doing the best he can, that he had a disability, folks would be more understanding,” said Lombardi. “My pin has done just that. When Joey wears the pin it explains his challenges and like magic, folks are more sensitive to my brother.”

Through the sales, Lombardi has helped to raise over $75,000 for autism awareness and hopes to remove the barriers between those diagnosed with autism and those unacquainted with the condition. The pins are also distributed by Autism Speaks, an autism advocacy program. To honor his continual work Lombardi’s home town of Greenburgh, NY declared January 23, 2013 “Nick Lombardi Day and presented him with a citation of achievement.

“I realized the more folks know about autism, the kinder this world would be for my brother and kids like him,” Lombardi stated. “I gain the pride of knowing I am doing something, even if it’s only one person, to change their view of my brother and others like him. To know that, is the best feeling you could ever have. There is no real word for it.”

Nick Lombardi at zoo

Lombardi believes that beginning Manhattanville in the Fall will provide him with the opportunities and resources to continue his efforts for autism awareness. Having visited the campus before applying to colleges, Lombardi got his first glance at the pride of a service-orientated college. Planning to major in Special Education and anticipating to continue his work with autism awareness, Manhattanville’s continuing dedication to community outreach and service is the perfect match for Lombardi.

“Manhattanville gives me the best of all worlds,” Lombardi said. “It’s a beautiful school, with respected programs in the career I desire, and has its heart and priorities in the right place. Where can I find a better fit?”

http://www.mville.edu/news-a-events/news/news-features/4385-incoming-student-dedicated-to-educating-people-about-autism.html

“Touch”: Understanding The Messages That Connect Us

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I have watched this show since the pilot episode and have found it to be profound in both concept and delivery.  For those not familiar with it Touch is the story of a widowed father caring for his non-verbal Autistic son.  It is novel in that the son Jake, non-verbal in the show, is the show’s narrator and voice of reason.  His actions drive the story lines, as his father struggles to understand his cues.  In a sense, the character ‘Jake’ embodies both stereotypes of the Autistic child: the boy within his own world, and the savant.  The message of the show, more than the portrayal of an Autistic child, is clearly the highlight of the series.  The messages of being interconnected, of seeing patterns of behavior and language, and the essential need to be understood are central themes to this series.  

As the father of an Autistic child watching this show, I ask myself constantly whether I would be able to pick upon my son’s non-verbal cues and act on them, even if they did not make the slightest bit of sense to me.  I would like to think I would, but a little voice inside would be be shouting, “What??  You want me to do what?  You’ve got to be kidding me!”  I do know however, that like the father in the show, I would not stop trying to understand his needs, even when those needs are difficult to discern.  That aspect is a universal characteristic of families on the Spectrum: we never stop trying to understand our children, no matter how tired we are, and no matter what obstacles are lain in our path.

Here are some of the sage words of Jake Bohm, the show’s narrator:

 

“Patterns are hidden in plain sight, you just have to know where to look. Things most people see as chaos actually follows subtle laws of behaviour; galaxies, plants, sea shells… The patterns never lie but only some of us can see how the pieces fit together. Seven billion, eighty million and 360 of us live on this tiny planet. This is the story of some of those people. The ratio is always the same 1 to 1.618 over and over again. Today we’ll send over 300 billion e-mails…19 billion text messages.  Yet we’ll still feel alone.”

“7 billion people on a tiny planet, suspended in the vastness of space, all alone. How we make sense of that is the great mystery of all of our existence. Maybe it’s being alone in the universe that holds us all together, keeps us needing each other in the smallest of ways, creating a quantum entanglement of you, of me, of us. And if that’s really true, then we live in a world where anything is possible.”

“The average person will say 2250 words to 7.4 other individuals. Will these words be used to hurt or to heal?”

“There’s an ancient Chinese myth about the red thread of fate. It says that the Gods had a red thread around every one of our ankles and attached it to all the people who’s lives we’re destined to touch. This thread may stretch or tangle but it will never break. ”

“Human beings are hard-wired with the impulses to share our ideas and the desire to know we’ve been heard. It’s all part of our need of community. That’s why we’re constantly sending out signals and signs. It’s why we look for them from other people. We’re always waiting for messages; hoping for a connection. And if we haven’t received a message, it doesn’t always mean it hasn’t been sent to us. Sometimes, it means we haven’t been listening hard enough. In spite of all our communication technology, no invention is as effective as the sound of the human voice. When we hear the human voice, we instinctively want to listen in the hopes of understanding it. Even when the speaker is searching for the right words to say. Even when all we hear is yelling or crying or singing. That’s because the human voice resonates differently from anything else in the world. That’s why we can hear a singer’s voice over the sound of a full orchestra. We will always hear that singer no matter what else surrounds it…”