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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The smiling, inquisitive boy who’d sung and pranced around his house in Magee now sat sullen and withdrawn.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.”
- Autistic National Speaker Stresses Love, Hope in ‘Defining Autism From… (prweb.com)
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Charles Turner, who replaced the stolen iPad.
The boy, Corbin Murr, who sometimes uses a wheelchair to get around, had his custom-app–packed iPad stolen off his chair last week while he was up and about, playing with his older cousin and caregiver, James Freeman, at a local playground.
“I felt really bad, you know, because that is his world,” Freeman explained in a local KGW TV news story about the theft. “That’s his toy he communicates [with], it’s always glued to his hand, he doesn’t like sharing it with other people, and it just keeps him in his own calmness.”
Luckily, Portlander Charles Turner was watching the news that night. The real estate agent and father of one was so moved by the report that, after a quick discussion with his wife Jenny and their understanding 6-year-old son, he decided to donate one of the family’s three iPads to Murr.
“For me, an iPad is largely a toy and occasionally a business convenience,” Turner told Yahoo! Shine. “To Corbin, it’s a thing of comfort, and a communication tool.”
Corbin with his mom, Gillian.
Turner then contacted the news station and was put in touch with the boy’s mom, Gillian, who was thrilled to have a replacement for the tablet, a new one of which would have cost her upwards of $399. Luckily, Corbin was able to sync the new machine from Turner with computer downloads of his apps, some of which cost as much as $50 each.
For many severely autistic individuals like Corbin, iPad apps — like those including AAC Speech Buddy, Articulate It!, MetaTouch, and Scene and Heard, according to the website Autism Speaks — can be life-changing communication tools.
Unfortunately, stories about the modern lifelines being stolen from children with autism are not uncommon: In January, a 12-year-old Virginia boy’s iPad was stolen and eventually recovered, although a special communication app that took his family more than a year to customize had been deleted. In Rhode Island in 2012, an 8-year-old girl got lost for several hours, turning up unharmed but robbed of her special iPad; the story so tugged on a pair of local police officers’ heartstrings that they bought her a new one. Similar tales of theft and loss have been reported in Sheboygan, Wisconsin; Manatee County, Florida; and Tampa, Florida in the past year.
Corbin, at least, was one of those whose story had a happy ending. “He’s been getting very good at [using the apps], being able to communicate his needs when he’s thirsty, when he’s hungry, when he wants a certain toy, saying ‘I love you, Mom,’” a very grateful Gillian told KGW. “So it’s a really big thing for him.” Yahoo! Shine was unable to reach Gillian Monday for further comment.
In an interesting twist, Turner, who is an ambassador with the Make-a-Wish Foundation, found out through meeting with the Murrs that Corbin has been granted a July family trip to San Diego from the foundation. Because Corbin is unable to fly, they’ll be making the journey by car. “And an iPad,” Turner noted, “figures in heavily for a 17-hour-plus drive.”
When Jonathan Izak looks at AutisMate, he only wishes something similar had existed when his brother was younger.
The iPad app, which Izak and colleagues have spent the last 18 months creating, is designed for autistic children — kids like Izak’s brother.
“I think it definitely would have helped him (with his) acquisition of language,” Izak said.
Some apps, such as Proloquo2go, replicate a staple of the autism field — the sentence builder that kids can use to build sentences using symbols and basic concepts such as “I want.” Such devices have long existed as standalone machines that can cost thousands of dollars. Other autism apps mimic the kinds of flash cards that can be used to visually represent things that one has trouble verbalizing.
AutisMate aims to handle those kinds of functions, but doesn’t stop there. One of its key features is designed to help kids even before they are able to piece together sentences that explain their desires. The scene-builder module uses pictures of the child’s own settings, such as their bedroom, work room, living room and kitchen.
Support for GPS allows the child to see one set of rooms, for example, at home and another set of scenes when at school.
The scene builder can also incorporate a variety of licensed videos to help with other settings, such as visits to the dentist or barber shop, as well as to help educate on concepts such as how to make it clear when they need a break.
Click this link to view the video: http://video.allthingsd.com/video/using-the-ipad-to-help-autistic-kids-learn/3D76C0B7-2EB7-473A-9C2C-FFAE818B299C
Another component breaks tasks up into different components and time frames, tying completing the activity to a reward, such as a cookie.
At $150, AutisMate is certainly pricier than the average app, but it’s in the same ballpark as Proloquo2go and other comprehensive software for those with special needs.
“It’s generally in the range of apps out there,” Izak said. That said, there are a range of other apps including free and low-cost apps for specific functions. There’s even an app,Autism Apps, that is a guide to other autism-related mobile apps.
Izak left his role at the University of Pennsylvania’s linguistics department to start work on AutisMate. Initially, he did the hands-on programming, but now he serves as CEO of the 10-person New York startup behind the app.
Eventually, Izak hopes to build his tiny company into a larger educational software firm.
“Really, the vision when I started this whole thing was pretty broad — to use modern technology to help those with a variety of special needs,” Izak said. “I started with autism because it was very close to home, and close to my heart.”
Jack, a gifted cellist, composes his own music. He has played to a packed Carnegie Hall as a student in the orchestra at Cincinnati’s School for Creative and Performing Arts. And now, Jack, an autistic 21-year-old, is driving.
“It’s a major milestone,” said Therese Wantuch. “Some things take longer for him, but people really don’t know the incredible things that these kids can do. They’re talented people, who just happen to have autism.”
The app, which was launched in May, has had thousands of downloads from across the globe, underscoring a “hot new trend” in the autism community that’s rooted in technology, said Andy Shih, senior vice president for scientific affairs at New York-based Autism Speaks. The nonprofit focuses on autism research and advocacy.
“In the past six months, there isn’t a day that goes by without me hearing from a member about a new device or app that’s been helpful in their daily lives,” said Shih. “Some of the functions of these new tools existed before, but they tended to be expensive and clunky equipment that was not easily accessible by your average family. The integration of mobile computing into our daily lives is what’s really driving this.”
Shih said Training Faces is reminiscent of software developed by Yale University about six years ago that “trains individuals how to recognize facial expressions and emotions.”
Understanding the difference between a smile and frown, and the emotions behind the expressions, is among the most common daily obstacles encountered by those with autism and other special needs, Shih said.
With Training Faces, Therese Wantuch said she wanted to create a learning tool that was fun and functional for children with autism. The app sells for $2.99 at the Apple App Store and Google Play.
Focused on a passenger train traveling to destinations around the world, the game requires players to match a specified emotion with the correct picture of the passenger’s facial expression.
The game is designed not only to help children with autism improve their emotion recognition, but better understand the meaning behind the expression and interpret expressions more quickly, Therese Wantuch said.
“It helps them answer the question, ‘Why are they happy or why are they sad?’ ” she said.
From her experience with her son, who was diagnosed at 18 months, Therese Wantuch said she knows firsthand the difference early intervention can make with children with autism.
“When he was diagnosed, we went all out,” she said. “My husband went part-time with his job. We did all the programs. One was called floor time, and we spent at least 20 minutes a day just getting in his face and working with him on verbal skills.”
The skills learned from Training Faces are paramount for children with autism to become more independent adults, she said.
“As the diagnosis of autism continues to go up, we need these folks to be independent,” she said. “It’s what gives them a fuller a life, and lets them get decent housing on their own and get a job so they’re not sitting in Mommy and Daddy’s family room their entire life. That’s not fair to them or their family.”
Nationwide, 1 in every 88 children is diagnosed with some form of autism each year, according to the Autism Society of Greater Cincinnati.
While there is no known single cause for autism, medical experts say it occurs because of abnormalities in brain structure or function.
For now, no hard data measures the impact apps such as Therese Wantuch’s can have on an individual with autism, Shih said.
“Whether it’s an app developed by a mom or at the MIT Media Lab, there does need to be more controlled, unbiased research to better understand that these applications indeed have a real impact,” he said. “But there are a lot of anecdotal reports on how great they are, and we have no doubt that these are emerging as new tools to help individuals and families maintain a higher quality of life.”
Therese Wantuch plans to give a percentage of each download to autism charities and research once her initial investment — she declined to say how much she’s invested — is recouped.
Her work has landed her a spot as a finalist for a $25,000 investment from Bad Girl Ventures, a micro-lending organization in Cincinnati created to fund woman-owned start-ups. She’ll learn Thursday whether her business plan is the winner.
The money would go to boosting work already under way on other gaming apps on which she’s working, she said. She wants to use proceeds toward her longer-term goal of creating apps and programs for adults with autism that help build skills for employment.
“It’s my big, hairy, audacious goal,” she said. “These kids know so much, but they’re so underestimated. They just need a chance.”
This isn’t a story about pot. This isn’t a story about anyone’s views about legalized/medical marijuana. This is a story about a particular business organization helping out families on the spectrum. -Ed
Ryan from the Renton Glass Blowing Studio demonstrates how to blow glass.
Note: For privacy reasons, the names used in this article are not real names. However, they are the names which these people are known within the medical cannabis community.
Undoubtedly, there are a lot of questions raised by the passing of I-502, the marijuana legalization initiative. But for one Ballard native, the new liberties present an opportunity to raise money for Seattle families in need who have autistic children.
At a two-story space rented in SoDo, Nov. 16-18, over three-hundred people bustled through table-lined corridors. Presenters shared tutorials on major topics in the medical cannabis industry such as growing medical cannabis, tincture-making and glass blowing. The “School of Dank” was underway.
“After I started selling glass peices, I just started learning a little here and there. I never took a class, I just kind of fell into it from working with so many blowers at the shop,” Proof said.
Seven years ago, Proof and his wife, “Miss Rose,” had a son, who they call “Boom Boom.”
“Its was time for a a change, so we closed the shop and moved to Hawaii. Its wasn’t soon after we got there that ‘Boom Boom’ started showing characteristics of autism. The health care in the big island wasn’t very good so we had to come back to Seattle,” Proof said.
Proof and his family moved back to Seattle, but faced financial problems. “We were close to living out of my car for a while. It wasn’t easy. We hadn’t planned for it. Luckily I found a job with Subcool as a rep not too long after I got back, which helped get me back on my feet,” said Proof.
Proof said the financial hardship he faced after his son was diagnosed with autism inspired him to raise money for families in need.
“We raised fifteen thousand with the first event last year, and we wanted to hit twenty this year, but I think it is closer to fifteen again,” Proof said.
Proof and Rose allocated the funds to needy families through one-hundred dollar Fred Meyer gift cards.
“It’s just easier that way because every family is different with unique needs, and the gift cards could make all the difference … it could mean a Thanksgiving dinner,” Miss Rose said.
On top of one-hundred percent of the proceeds from the fundraiser going to needy families, Proof said that they donate thousands of dollars toward essential living products like deodorant, toothpaste, socks, and blankets to youth care organizations.
Proof’s employer, “Subcool,” owner of TGA Subcool Seeds and developer of one of the first seed distributors in the United States, was a speaker at the event.
“This is an amazing thing they are doing here — I mean we are raising money for these kids so they can buy food and iPads that enable them to communicate … it must be so hard to communicate with you kids that way … I have so much respect for Jinx and Rose. This event is setting an example for the entire industry. We are telling the world that we are here to help people,” Subcool said.
Dean Martin, long-time friend of Proof’s and another Ballard native, said he used to race his sports car around Ballard and that the police knew him well from hot-rodding. These days Martin spends his time being involved in the community in a very different way. This year, Martin catered the entire event, providing delicious dishes like lemon chicken and sesame teriyaki.
“I just like to volunteer when I can and do whatever I can to help out, plus I enjoy cooking –- it’s my third event this year,” Martin said.
After another successful event and bringing in over fifteen thousand dollars, Proof plans to continue his fundraising event, and as more states legalize medical cannabis, Proof said there is more opportunity to expand. With plans for expansion, Proof remains humble for all the help he has received.
“We really need to thank our volunteers that can and will do anything, which is so awesome! We could not have done this without them,” Proof said.
- CDC: One in 88 U.S. kids is thought to be autistic
- Joseph Sheppard, 42, is a person with autism who works on autism research
- He runs an autism writing group in Victoria, British Columbia
Victoria, British Columbia (CNN) — Joseph Sheppard has an IQ above 130. Ask him about his life or worldview and he’ll start drawing connections to cosmology and quantum mechanics. He’ll toss around names of great intellectuals — Nietzsche, Spinoza — as if they’re as culturally relevant as Justin Bieber.
It might not be obvious that Sheppard has a hard time with small tasks that most of us take for granted — washing dishes, sending packages, filling out online forms. Or that he finds it challenging to break out of routines, or to say something appropriate at meaningful moments.
Sheppard, 42, has high-functioning autism. He found out only about six years ago, but the diagnosis explained the odd patterns of behavior and speech that he’d struggled with throughout his life. And it gave him the impetus to reinvent himself as an autism advocate.
“I was invisible until I found my inner splendor,” he told me in one of many long, philosophical, reflective e-mails earlier this year. “My ability to interpret and alter my throughput of judgments, feelings, memories, plans, facts, perceptions, etc., and imprint them all with what I chose to be and chose to do.
“What I choose to do is change the course of the future for persons with autism, because I believe in them and I believe, given the right support and environment, they will be a strong force in repairing the world.”
U.S. health authorities announced in March that autism is more common than previously thought. About 1 in 88 children in the United States have an autism spectrum disorder, according to the report. Autism spectrum disorders are developmental conditions associated with impaired social communication and repetitive behaviors or fixated interests.
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Diagnoses have risen 78% since 2000, partly because of greater awareness, and partly for reasons entirely unknown. Most medications don’t help, and while some find improvements with intense (and expensive) behavioral therapy, there is no cure.
Rates appear to be similar in adults. England’s National Health Service found in 2009 that about 1 in 100 adults are on the autism spectrum. People with more severe forms of autism may not be able to live independently or hold complex, social jobs. But those considered high-functioning can have a wide range of careers; you may even have a classmate or coworker with high-functioning autism who isn’t as vocal about it as Sheppard, or who never got a diagnosis.
For World Autism Awareness Day in April, when organizations hold fundraising and awareness events to get the word out, Sheppard gave a talk at a local mental health facility about assisting people with autism in his idyllic Vancouver Island city of Victoria, British Columbia.
“The stigma environment is huge,” Sheppard told me in February over sushi at the University of Victoria’s cafeteria. “People can learn that you have autism and they can talk to you differently, they can treat you differently; you can feel like you’re less than human, your voice doesn’t matter.”
Giving voice to people with autism
Sheppard found out he had autism after a relative’s diagnosis spurred him to get tested himself. His own diagnosis inspired him to help others. But to become fully involved and do his own research, he needed to return to school.
“I did a psychology degree in some ways to heal myself, and to bring myself into a higher level of functioning,” he said. “I had a real yearning to contribute to my maximum potential.”
In 2007, he went back to the University of Victoria — where he’d studied philosophy in the 1990s — for a second bachelor’s degree. He hopes to attend graduate school.
Last year, one of Sheppard’s advisers, psychology professor Jim Tanaka, brought him on as co-director of the Centre for Autism Research, Technology and Education (CARTe), which launched officially in November. The center uses technology to help people with autism.
“We have this dream of making UVic the destination campus for people on the spectrum,” Tanaka said. He and Sheppard want to actively recruit the emerging generation of young adults with autism who are applying to universities and help them thrive on campus.
Already, Sheppard and Tanaka are working with university students and children in Victoria who’ve been diagnosed with autism.
Their center is currently testing computer games Tanaka and colleagues at the University of California, San Diego developed, targeted at kids on the autism spectrum who need help recognizing and interpreting facial expressions.
In a game called FaceMaze, kids are challenged to mimic circle-shaped cartoon characters’ facial expressions on a computer screen. Another program is in development for the iPad that will feature short videos of people a child knows making different expressions.
The philosophy behind these games, Tanaka said, is that “if you’re better at expressing emotions, you’re better at perceiving them.”
The games appear to have some benefits — the quality of the kids’ facial expressions is improving, Tanaka said — but the research is still preliminary, and it remains to be seen if it will have an effect on everyday interactions.
Games like these are tested on weekends in a program called Face Camp.
On a recent weekend, they hosted about 20 kids on the autism spectrum
at a middle school. Sheppard tried out an idea he had called Emotion Roller Coaster. He invited the kids to board an imaginary roller coaster that zoomed up and down the hallways. At each stop, one of Tanaka’s psychology students would prompt them to tell stories related to particular emotions. “The kids were just loving it,” Tanaka said.
“He’s the visionary of our center, and I just try to make it happen,” Tanaka added.
One of Sheppard’s big projects is to start a publication consisting entirely of fiction and nonfiction stories about autism by persons with autism. “Autism’s Own Journal” is aimed at helping people understand the subjective experience of having autism. According to its website, the inaugural issue will be published in April 2013.
The journal would be the work of a group Sheppard runs called Authors with Autism, where people on the autism spectrum can meet, talk and write together, “to take the power of their own kind of freedom and put down on paper what their needs and desires really are,” Sheppard says.
Sheppard developed a format for the group in which each person gets three minutes to share something related to writing or autism. Between sharings, everyone writes whatever they want for five minutes. About eight or nine people are involved; some are students at the University of Victoria. One of them, Philip, has made friends with almost everyone in the group.
“Joseph acts as a facilitator, and he encourages us to be our own leaders, and that gives us a lot of potential for individual expression,” said Philip, who asked that his last name be withheld.
At one of the first sessions this winter, during a sharing segment, a friend of one of the participants poked his head in, and the conversation stopped, Sheppard recalls.
“I think there’s just this judgment that happens whenever there’s a neurotypical in the room,” Tanaka explains, using the autism community’s term for someone who doesn’t have a neurological disability. “Part of the magic that’s happening is because neurotypicals are not allowed.”
A way of seeing the world
I met Sheppard and Tanaka at the University of Victoria during the week of an international science event in Vancouver in February. I had learned about their work from a contact at the university. Victoria is only accessible by air or water, so I took a sea plane to the quaint island port.
Towering over Tanaka at about 6 feet tall, Sheppard has imposing broad shoulders and large hands, but his demeanor is warm and considerate. His friendly hazel-green eyes don’t give away that he’s conscientiously trained himself to make eye contact during conversations, or that it still doesn’t come naturally.
Overall: 1 in 88 U.S. kids have autism; up 78% from 2002
Total: Estimated 1,000,000 children with autism
Boys: 1 in 54; up 82% from 2002
Girls: 1 in 252; up 63% from 2002
Non-Hispanic white children: 1 in 83; up 70% from 2002
Non-Hispanic black children: 1 in 98; up 91% from 2002
Hispanic children: 1 in 127; up 110% from 2002
Symptoms typically apparent before age 3
Source: Centers for Disease Control and Prevention
Sheppard speaks passionately about autism and the need for more support. And in bolstering his arguments, he’s exceptionally thorough. For our first conversation, he had prepared a stack of dozens of peer-reviewed articles about autism to back up the facts that he planned to mention, so I wouldn’t have to take his word for it.
In March, we corresponded by e-mail, partly for efficiency, and partly because I quickly realized how well Sheppard expresses himself in writing, and that he had a lot to say in response to simple questions. And while a single article could not contain most of his copious reflections that flooded my inbox, he maintained a certain self-consciousness and humor about it. He titled one e-mail thread with the subject, “Could the man with autism I am interviewing be sending yet more long e-mails?”
Sheppard expresses his view of autism through science and science fiction metaphors. He’s writing a sci-fi-like book that attempts to articulate what autism feels like. Creating an alternate vision of the world helps Sheppard make sense of everyday relationships that might otherwise confuse him.
“The way I experience the world is so different that I have to learn how other people experience the world and talk in that language,” he told me.
To begin with, he views his body as a spaceship. He doesn’t fully understand the mechanics of that spaceship, so he reads a lot about science, and studies it, to try to learn more.
And, in his view, each spaceship — every person — has a different central computer delivering judgments about the spaceship’s mission and what it encounters, much like HAL in “2001: A Space Odyssey.” Sometimes, he says, those judgments make other people unkind to those with autism because they seem different.
Judaism also has informed his perception of the world and himself. (He’s writing a book called “The Dharma-Torah: Autism Space Flight Manual,” and friends call him by his Hebrew name Yossi). Sheppard did not grow up observant, but he has some Jewish heritage, and in the past seven years he has become an active member of the Orthodox Jewish community of Victoria.
He believes the religion’s rituals — the wrapping of teffilin, the prayers, the observance of the Sabbath — have given him a regimented routine that helped him overcome certain autism-related behaviors, such as repeatedly playing the same level of a computer game to the point that his work suffered. “Before I practiced Judaism, it was like all the rituals of the world crashed in on me and I could not move as a consequence,” he said in an e-mail.
Adults with high-functioning autism typically have difficulties perceiving the nuances of speech and behavior — for instance, friends say Sheppard often misses sarcasm and takes some phrases too literally.
And Sheppard has other day-to-day challenges, such as filling out online forms. “Sometimes I forget about that because Joseph is such an exceptional person,” Tanaka says.
Tanaka has helped Sheppard fill out online applications for scholarships and funding. Beyond the name and address fields, categories such as “subject area of study” don’t immediately make sense to Sheppard. It’s like “trying to fill out an IRS form when you have no clue what the questions are,” Tanaka explains. Meeting deadlines is also a challenge for Sheppard, who can talk or write on and on in long “monologues” about particular subjects.
Jacqueline Bush, a graduate student at the University of Victoria who tutored Sheppard in statistics, found him extremely bright and quickly realized he didn’t really need tutoring– only structure. They’ve stayed good friends, in part because of Sheppard’s spontaneity and “contagious” excitement about life, she said.
“He’s an incredibly genuine person with a real passion to help everybody,” Tanaka said.
Journey to diagnosis
Sheppard’s family moved around a lot when he was a child: England, Peru, Boston, New Mexico, British Columbia. His parents owned stores that sold sacred objects from all over the world, he said.
He remembers that whenever his father was cross with him, his father always thought Sheppard was smirking, and as a boy he had trouble telling his father how he felt. His friends were stuffed bears: Beary and Mary were a couple, who were also friends with Larry, Terry, Jerry and Gary. Typical of his ability to see patterns, he notes that, today, his rabbi’s name is Harry, and the name of his ex-common-law wife rhymes with Beary.
After studying philosophy in the 1990s, Sheppard became a professional event planner in Victoria, organizing everything from hip-hop concerts to fashion shows to go-kart races to the 1997 North American Indigenous Games. As an independent contractor, he didn’t have to keep to anyone else’s schedule. He would work anywhere from about 20 to 60 hours a week, at any time of day or night. What others consider a “normal” 40-hour workweek is an impediment for Sheppard: “Keeping myself on the schedule becomes my focus and accomplishment, not creating something that is super successful.”
Sheppard later taught life-coaching workshops in Arizona. But after the 2000 burst of the dot-com bubble and the World Trade Center attacks of 2001, Sheppard found that people were less open to innovative, quirky ideas and more concerned about money. He delved deeper into his reading and writing, and homeschooled his children for 3 1/2 years.
By 2005, Sheppard was unemployed and physically ill. He had untreated asthma, Celiac disease, sleep apnea and migraines.
Around that time, a young relative he didn’t want to identify was not speaking in full sentences at the appropriate age. Sheppard talked about it with a school principal he knew, who suggested the child get tested for autism. A team of specialists evaluated the child and arrived at a diagnosis of autism.
After Sheppard read that autism can run in families, some of his odd behaviors and challenges fell into place.
“Suddenly my past started making sense in ways I cannot describe. I then decided to be brave like my relative and accept being tested,” he wrote in an e-mail. In 2006, he underwent about eight hours of tests, which helped a clinical psychologist conclude that Sheppard had high-functioning autism.
“He was able to look back on his life and make sense of a lot of things,” Bush said. “For sure, I think he felt that getting that diagnosis was very helpful in understanding how he’s different.”
Within a year of the diagnosis, Sheppard’s relationship with his common-law wife underwent a steep decline, and they ended it a year and a half later. Their three children don’t live with Sheppard, but he still sees them.
“I do not blame the diagnoses or my ex or myself” for the end of the relationship, Sheppard wrote in an e-mail. “My illnesses had something to do with it I think, I just was not functioning properly, and a family most often needs parents that can function fully.”
Later-in-life diagnoses of autism are not uncommon, says Leslie Speer, clinical psychologist at the Cleveland Clinic Center for Autism in Cleveland, Ohio. While doing autism evaluations in Salt Lake City, where she got her doctorate, she identified many adults as having high-functioning autism in their 30s, 40s and 50s.
“The individuals I met, they were often depressed,” Speer said. “They couldn’t understand why they had so many difficulties in their social relationships, why their wife had left them and why they couldn’t keep down a job.”
Some of these patients took comfort in knowing there’s a name for the problems they’d been having, a community of others who share those difficulties and counseling resources available, Speer said.
Autism as an identity
Reflecting on his life, Sheppard noted that it may seem to an outsider as though he suddenly emerged from obscurity since his diagnosis. And in a way, he did — after finding an identity as a person with autism, he suddenly had a mission and purpose.
A child or adult with an autistic spectrum disorder might:
–Repeat actions over and over
–Not look at objects when another person points to them
–Avoid eye contact and want to be alone
–Prefer not to be held or cuddled or might cuddle only when they want to
–Appear to be unaware when other people talk to them but respond to other sounds
Source: Centers for Disease Control and Prevention
One issue of identity that troubles him and others in the autism community involves a proposed change in the next edition of the Diagnostic and Statistical Manual of Mental Disorders, the essential guidebook for mental health professionals.
The DSM-5, to be published in May 2013, will no longer include a separate diagnosis of Asperger’s syndrome, which is basically high-functioning autism without any childhood delay in cognitive or language development.
Many experts, including Speer, say the majority of people who meet current autism spectrum disorder criteria would still qualify for services under the revised definition.
But Sheppard remains concerned that the changes will become an excuse to limit diagnoses and support for individuals with high-functioning autism, as well as those who aren’t able to correctly describe their autism-related behaviors. He supports the conclusions that science backs up but also recognizes that a deeper identity issue is at play when it comes to autism.
“Autism identity is something different than the condition,” he said. “Just like gender is not the same as biological sex. And, so, if someone … is identified through Asperger’s, then I think that if it’s important to them it should be recognized.”
For instance, his friend Philip, who attends Sheppard’s writing group, identifies as having Asperger’s syndrome specifically, while Sheppard does not. But Philip recognizes that he and Sheppard, while having individual strengths and weaknesses, are in similar places on the autism spectrum. And they share a passion for helping others with autism.
“His goals with helping autistic individuals transition from high school to university, or from university to the work force, that’s what really matters to me,” Philip said.
Toward a better future for people with autism
Sheppard has big dreams, but the reality is there are plenty of people with more severe autism who won’t get to university. It’s a big issue as to what happens when they are no longer legally eligible for educational services in the United States — it’s generally age 22, but varies by state.
Some go to a workshop setting where they get paid minimally to do work, said Dr. Max Wiznitzer, a pediatric neurologist and autism expert at Rainbow Babies & Children’s Hospital in Cleveland. Others find appropriate part-time work such as cleaning, shelf-stocking and grocery-bagging. Sometimes, it’s glorified daycare.
Some sit at home because there aren’t any real opportunities in their community, or their parents are concerned someone will abuse or take advantage of them.
“The idea is to make sure that they don’t have to sit in front of a TV all day,” Wiznitzer said. “But it is an issue in terms of making sure that they have some opportunities for gainful employment at their developmental levels.”
In Canada, where Sheppard lives, the availability of government-funded services and programs for autism varies widely according to province, and sometimes there are significant waiting lists. Such resources are even more limited for older children and adults, according to Autism Speaks Canada.
As a person with autism himself, Sheppard approaches low-functioning individuals as “valued elders” — they are wise but need to be cared for and are not expected to go full speed through life, he said. In his vision of helping these people, Sheppard doesn’t want to change people with autism, but rather provide better support for them, and allow them to thrive.
“He brings out the best in the people,” Philip said. “He makes them feel like a winner.”
Such optimism is greatly needed as autism gets diagnosed ever more frequently. Many parents struggle financially and emotionally to support their children on the autism spectrum, hoping they grow up to live independently and have meaningful careers — but it doesn’t always happen.
In the face of stigma, bureaucracy and ignorance, the community needs a guide to help people see the good in themselves and reach their own potentials — in a word, a shepherd.