NOVEL APPROACH TO ASPERGER’S Story Told From Point Of View Of Young ‘Aspie’
Connor, who is in Grade 3, is having “a few issues” at school. “My teacher, Mrs. Winters, and I don’t see eye to eye,” is how he puts it.
Connor is a sweet kid and a brilliant student who strongly dislikes hugs and has an intense interest in math, dinosaurs and dogs — factoids about which he loves to share with everyone he meets. His “issues” arise around his interpretation of school rules, attempts to read body language and facial expressions and his, well, honesty.
Gavin Walberg proudly identifies as an ‘Aspie.’
Take the time his teacher’s face reminded him of a TV commercial he’d just seen. “Mrs. Winters,” he asked her, “did you know that for $29.95 you can buy Magic Wrinkle-No-More Cream from the TV?” He ended up in the principal’s office. Along the way, he counted all the beige floor tiles.
Connor has Asperger’s Syndrome, a neurodevelopmental disorder characterized by significant difficulties with social interaction, everyday communication, and understanding and displaying appropriate emotions. It’s considered a high-functioning form of autism.
Connor isn’t a real boy, but rather the quirky protagonist in a new e-book, Spaghetti is NOT a Finger Food (and other life lessons), which Jodi Carmichael wrote to help teach students (ages eight to 12) about the disorder.
“The theme is acceptance — of yourself and others,” says the Winnipegger, whose first novel was published by the California-based Little Pickle Press.
Connor isn’t trying to be rude, or a know-it-all, she says, when he states the obvious (factually correct but socially insensitive) or bores people with his facts and figures.
“It’s almost as if that social filter that says ‘What I’m saying is not being received positively’ doesn’t work. You’re boring somebody and don’t realize it,” says Carmichael, a school secretary and mother of two children, ages 11 and eight.
The character of Connor initially popped into her head as just a quirky kid ranting about his day at school, but as she gave him a voice, a bigger story — and message — began to emerge.
“They say write what you know. I have ADHD (attention deficit hyperactivity disorder), so some of his personality is me,” Carmichael, 43, who was recently diagnosed, says. “But I also did a lot of research to make sure his characteristics were a true reflection of a child with Asperger.” The book’s manuscript was reviewed by two child psychologists.
The book doesn’t mention the condition by name, she says, mainly because it’s written in the first person from Connor’s perspective.
That term, incidentally, is being dropped from the American Psychiatric Association’s (APA) diagnostic manual, the guidebook that defines what constellations of symptoms doctors recognize as mental disorders. It recently underwent its first major rewrite in nearly 20 years.
When the new edition, known as DSM-5, comes out next May, Asperger’s will no longer appear but be incorporated under the umbrella diagnosis of “autism spectrum disorder,” which is already used by many experts in the field. (The new category will include kids with severe autism, who often don’t talk or interact, as well as those with milder forms.)
How to define the various ranges of autism was one of the most hotly debated changes in the DSM-5 revision. Some advocates opposed the idea of dropping the specific diagnosis of Asperger’s, arguing that many who have the condition embrace their quirkiness and will continue to use the label.
“We have a lot of people who self-diagnose and part of their identity is Asperger, and they also see it as something that is different than being strictly autistic,” says Charlene Walberg, president of Asperger Manitoba. “Although they have struggles, they also see the positives of it.”
Her son, Gavin, 11, who was diagnosed with at age six, is one of the people who proudly identifies as an “Aspie.”
Although he has never dumped a bowl of spaghetti over his head in the school cafeteria, she could see him in the character of Connor, Walberg says. Like the fictional boy, Gavin paces when he’s stressed out, has sensory sensitivities, and has difficulty with social nuances.
“He just doesn’t get the point of things sometimes. One day he came home from summer camp for kids on the spectrum and said, ‘Mom, did you know that after you ask me how my day was, I’m supposed to ask you how your day was?'” says Walberg. “You can see him processing: ‘I really don’t care about your day, but I’ll ask anyway because they told me I’m supposed to.'”
The term Asperger’s, she says, puts a helpful label on something her son and others like him are trying to understand, as they navigate a world of “neurotypicals” (the term for us non-Aspies).
The biggest challenge is fitting in, says Gavin, who has also been diagnosed at different times with anxiety, obssessive-compulsive disorder (OCD), ADHD, and Tourette syndrome. “Sometimes I don’t feel like I fit in with the other kids. It’s easier for them to make friends,” he writes in an email interview.
While he already has “a pretty good life,” Gavin says he does wish the rest of us would see how special people with Asperger’s are and how they can fit in if given the chance. “We should be treated like kids — that might need a little extra help,” he writes.
Bryan Kehler, 31, says being diagnosed with Asperger’s when he was 16, after having been slapped with all kinds of labels by various doctors and specialists, allowed him to finally make sense of his world.
“I saw it as a positive thing and I was able to get certain support, especially with my education,” says the Winnipegger, who holds degrees in environmental science and philosophy. He’s also a Asperger Manitoba board member.
As for the decision to drop Asperger’s disorder from the new diagnostic manual, it’s hard to see anything positive coming out of that, says Kehler.
“There’s a possibility, perhaps a strong possibility, those people under the new label (autism spectrum disorder) won’t receive the same supports or the same quality of supports,” he says. “It’s almost an affront to us, since it’s not acknowledging that we exist as a separate identity, that we’re unique and similar to, but not the same as people with autism.”
A lot of people in the Asperger’s community want to hold on to the label, he says, “because it’s part of who they are.”
Jodi Carmichael’s e-book, Spaghetti is NOT a Finger Food, is available for $6.99 through Amazon.
THE GOODS ON ASPERGER’S SYNDROME:
Asperger’s Syndrome (AS, also known as Asperger Syndrome or Asperger Disorder) is a pervasive neurodevelopmental disorder that causes significant problems in socialization, communication, thinking, behaviour and other areas of functioning.
The cluster of symptoms was first described in 1944 by the Viennese pediatrician and child psychiatrist Dr. Hans Asperger, who called it “autistic psychopathy.”
People with AS may also experience anxiety, attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), Tourette syndrome, anxiety, depression and various other learning disabilities.
Estimates on the prevalence of classic Asperger’s vary widely: rates range from one in 25 to one in 10,000 children because of different diagnostic criteria used in the U.S. and Canada. But an estimated one in 165 people has some form of autistic disorder.
The ratio of males to females with autism spectrum disorder is four to one. However, with Asperger’s it is 10 to one.
The classification Asperger’s Disorder has been dropped by the American Psychiatric Association’s new diagnostic manual. Instead, it will be incorporated under the umbrella term “autism spectrum disorder” when the DSM-5 is published in May of 2013.
Famous “Aspies” (not all formally diagnosed) include: Dan Aykroyd (actor), Daryl Hannah (actress), Temple Grandin (animal behaviourist), Stanley Kubrick (film director), Glenn Gould (Canadian pianist), Albert Einstein and Isaac Newton
SIGNS, SYMPTOMS OF AN ‘ASPIE’
Has average to superior intelligence
Is detail-oriented but can’t see the big picture
Prefers information that is factual or technical rather than abstract
May talk incessantly about facts with no point or conclusion
Makes blunt comments
Has a tendency to interpret information literally
Has marked impairment in social interaction, which may include an inability to establish eye contact, read non-verbal and social cues, and have a two-way conversation (i.e., can talk but can’t respond)
Is overly shy or inappropriately outgoing
Shows a lack of empathy for others
Fails to develop peer relationships
Demonstrates restricted, repetitive behaviour and activities, including an obsessive preoccupation with narrow interests (i.e., doorknobs, hinges, astronomy, history)
Has inflexible routines or rituals and gets upset if these are interfered with
Has repetitive mannerisms such as jumping, rocking, pacing, hand flapping or finger twisting
Lexi Pereira and her brother, Spencer, raised money with their homemade lemonade to benefit Gateways Community Services in Nashua.
My name is Lexi and I am 9 years old. One morning I told my mom that I wanted to do a lemonade stand for charity. We talked about the different kinds of charities. Since my younger sister, Ellie, has autism, and I have Asperger’s Syndrome which is a kind of mild autism, I thought I should give to a charity that helps other kids with autism.
So we bought some supplies. My mom, brother, and I started to make some lemonade. We made signs and went outside to start selling. I soon had my first customer.
I sold my lemonade in the afternoons and evenings from June until the middle of July. Some days I had more customers than others. People were very generous. Some people came back every day and one man even gave me $20!
At the end, I was so close to $100 that my dad said he would donate the last $3. Then, I had $100 to donate. I decided to give that money to Gateways Community Services in Nashua which is the place where my sister’s therapists work. They do a lot for kids with autism, and I wanted to give back to them.
Thank you, people of Merrimack. I couldn’t have done it without you.
Making life better can be easy, just by reaching out to others who may be a little different.
Three soon-to-be sixth-graders in the Rockwood School District are trying to do that through the REACH program they created this year.
REACH stands for the Road to Embrace Autism with Care and Heart.
It’s being used in Uthoff Valley and Kellison elementary schools to help students there understand and learn more about kids with disorders such as autism.
Kevin Schuller, Taylor Baxter and Emily Oster, 11-year-olds who will attend Rockwood South Middle School in Fenton, told the district’s Board of Education Aug. 2 they want to expand their program district-wide.
They created it in February when the trio attended Uthoff Valley.
It’s characterized by difficulties in social interaction, as well as some fine motor skill problems and sensitivity to noise, said Kevin’s mother, Debbie.
“He had been teased, with kids being mean to him,” she said. “And then Emily and Taylor got involved after Kevin, in fourth grade, gave a presentation along with his speech and language teacher about his Asperger’s and what it’s like to have it and why he acted the way he did sometimes.”
“I’ve been bullied and teased by kids who didn’t understand me,” Kevin said. “As part of the presentation, I read a book to the class on what it feels like to have Asperger’s syndrome.”
Taylor said last year she noticed Kevin when he sometimes acted in ways she didn’t understand.
“My mom thought he may have autism, so she decided to get me a book to help me understand autism better,” Taylor said. “That little bit of knowledge has made me want to learn more about autism. It has given me opportunities to educate my friends about autism and why some kids might act a little different. My friends now are more patient and accepting to people of all abilities.”
That’s how she, with help from Emily and Kevin, formed REACH to help kids with different abilities fit in.
“We wanted to be proactive, not reactive, because education at an early age can make a huge difference in our lives,” Taylor said. “Kevin’s now one of my closest friends, and he made me want to learn more. Every kid wants to be understood and accepted and needs friendship.”
Emily, too, saw Kevin getting picked on, but “now I know he just wants to be accepted and have close friends, just like me.”
The kids established a program that could extend throughout district-wide, like Rockwood’s bullying program does, Taylor said.
At the two elementary schools, kids are learning how distractions like assemblies and fire drills and unstructured time like recess and lunch can be hard for kids with autism. And they’re encouraged to include those with different abilities in their activities, such as on playgrounds, Emily said.
“For instance, though he didn’t want to be on the field, Kevin has helped us play kickball by being a referee,” Emily said.
Kevin called REACH “really needed in all schools.”
“I had been upset a lot, it was hard to finish school work, and I didn’t even want to go to recess for awhile,” he said. “But with REACH, kids began to understand and treat me better. REACH does work and can prevent bullying.”
In their presentation to the board, the three kids laid out some possible REACH activities at all schools, such as having guest speakers come in, promoting involvement with the Walk Now For Autism Speaks event, having special assemblies, having books available about autism, and even demonstrating sensory processing differences by having kids without autism listen to a teacher’s instructions while loud music is playing and then trying to write down what was said.
The kids even created a website, www.reachautism.org.
REACH operations in Uthoff Valley and Kellison “are allowing teachers to work together on great ideas,” said Suzanne DuPree, Kellison’s assistant principal.
“As these kids move on to middle school, they just want to continue to be sensitive to those with special needs and have friends of all abilities,” she said.
Janet Strate, president of the Board of Education, said REACH is a new idea and until the kids’ presentation, no one in the district knew much about it.
“We have a great character ed program, and we may be able to incorporate some of their ideas into that existing program,” she said.
- Autism Awareness Effort By 11-Year-Olds May Expand (stlouis.cbslocal.com)
Institute’s Mobile Apps Are Built By Hands of Those With Autism
NonPareil Institute in Texas has long-term plan for campuses nationwide
Computerworld – The connection between adults with autism and computer programming has become the basis of a unique nonprofit technology company in Texas.
Called the nonPareil Institute (for “no equal”), the company builds apps for iPhone and Android phones and PCs. The 11 staffers provide 80 students who are on the autism spectrum, which includes Asperger’s Syndrome, technical training and help adjusting to a work environment.
The students, ranging in age from their early 20s to mid-50s, and staff have already launched NPISarobon, an abacus-like app for 99 cents available on the App Store for iPad. Two new apps, Card Tracker and Number Tap, are about to be launched in the App Store. NPISarbon was conceived and coded by Cheryl O’Brien, a student at the institute who is now a staff programmer.
“We also have a social app coming, and it’s going to be revolutionary,” CEO Dan Selec said in an interview, while declining to offer any details. “Everybody thinks if you have an app in the App Store, you’re a millionaire. I wish it worked that way. So far our sales have been insignificant.”
But Selec, who has a 14-year-old son with Asperger’s, has a 100-year vision for nonPareil and said mobile app revenues will eventually sustain the institute’s operating budget, which is expected to be $1.2 million for 2012. “It just takes one app that gets everybody excited,” he said. “Time will tell.”
Selec co-founded the institute in his kitchen more than two years ago with two other fathers of sons with autism, a developmental disability that can cause problems with social interaction and communication. Asperger’s is a milder form of the condition.
One of those dads, Gary Moore, is president of the institute and likes to point out that building a successful app takes persistence. “Rovio built 50 games before coming up with Angry Birds,” he said. The third dad and co-founder is John Eix, who works in business development for a Dallas law firm.
Situated in classrooms at Southern Methodist University in Plano, Texas, the institute plans to build a $20 million campus nearby that will include housing for the most severely autistic students, and then expand to branch campuses around the U.S., Selec said.
Kyle McNiece, 23, originally a student at the institute, is now a teacher there, similar to a graduate instructor. He teaches apps coding using tools such as Hammer and Unity and, soon, the Unreal Development Kit.
“What I do really well is design, although the coding part of it is hard,” he said in an interview. A self-described person with Asperger’s, he said his main difficulty is misconstruing what people mean when they say things, such as when they tell a joke or are being sarcastic.
“It really has been an adjustment in a good way here,” he said. “Back home, people didn’t understand what it was to work with an autistic, but it’s easy to get along with people here and what they say. It’s actually been a huge, drastic change.”
Asked how happy he is at nonPareil on a scale of 1 to 10, he answered: “I’d say it’s an 11.”
McNiece came to nonPareil when he was still deciding whether to look for a job or go to school. He didn’t expect to become an instructor but said he likes the job and is working on fully adjusting. “If I could change anything, it would be that I really want to not be as stressed out and frustrated when problems arise, like when students come to me all at once with questions,” he said.
NonPareil is a good fit, McNiece said. “My five-year goal is to get that one product out that makes our name recognizable, so other [developer] companies say, ‘Hey, those people made something fantastic and we want those people to work here.’ ”
Moore said three nonPareil students have finished a variety of design and coding classes and have gone on to programming and design jobs.
Students each year get certificates for finishing various classes, but the institute is not accredited as a school, since it is technically a nonprofit business, Selec said. A student pays $600 a month to take classes, but the money is donated to the institute to help keep it running. Apps are not patented or copyrighted, and profits from apps will go back to the institute.
Selec is dedicated to building housing in the next phase partly because so many people with autism can’t handle a long commute, even though they might do well in a design or programming class. About 70% of the students don’t drive, and some still must commute three hours each way to attend.
“Not all our students are computer savants, and some have social challenges or difficulties with lighting or communications,” he said. “Some have been here a year and still have trouble finding the bathroom. Even so, you can achieve great things.”
Similar to his co-founders, Selec said he started nonPareil by “looking at my son, who wasn’t playing football but was on the computer. I realized he was pretty good for this stuff.”
Moore added that many people with Asperger’s “have an uncanny ability to connect with technology.”
The co-founders also realized that they didn’t know what would happen to their kids when they became adults, a problem facing hundreds of thousands of families with autistic children around the globe.
“We literally have received emails from all over the world asking about the work we’re doing,” Eix said. The waiting list at the institute is now about 80 names, and is expected to mushroom.
Selec said he knows of other nonprofit organizations training adults with autism to become software testers, such as AspiraTech in Chicago and another institute in Denmark. Offering training in actual programming and design as NonPareil does is rare, if not unique, Selec said. Building a campus with housing would be unique.
Selec said the NonPareil concept might not have been possible without the invention of the App Store and subsequent others like the Android Market. “We owe those markets a debit of gratitude without a doubt,” Selec said. “They provide built-in marketing. If I’ve written the greatest app ever and can’t get it into the hands of the public, what have I done?”
With mobile markets growing, Selec said he feels more secure about nonPareil’s prospects for selling apps. “The mobile market is still in its infancy and will change over time. We want to have our data with us wherever we go and be free to use it where we are. I believe that the apps market is just going to get stronger, although it never kills the PC and desktop. Just look at how the female population is untapped with games, although Zynga has tapped into that.”
While some of nonPareil’s apps will be games, the focus is much broader, reflecting the values of the institute, which maintains that its students have special abilities, not disabilities.
“We’re finding ideas for apps to make life easier,” Selec said. “We’re building a math educational app as well. We’re looking for a way for people to learn math in a more natural and easy way.”