Month: March 2012
Yesterday Mike participated in his school’s Spring Musical Performance; all I can say is: who is this kid? I knew Mike had to say a sentence as part of presenting a song to the audience; many kids had similar tasks. That task tripled as the week went on, eventually having to say the lines for two of his classmates as well as his own.
This didn’t really surprise me; Mike has a large vocabulary. What surprised me though, was when the assistant musical director introduced herself to my wife and me, saying how impressed she was by how well he had done singing, dancing and speaking all week during practices.
For those who don’t know Mike, he is a ‘rock n roll’ guy; he doesn’t care for oldies, pop, dance, country or any other genre of music. He asks us to turn off the local Top 40 radio station in the car. He asks his mother to stop singing along to LMFAO. He runs out of the room if J-Lo‘s Fiat commercial is on TV, or at hits the Mute button on the remote control while plugging his ears with his fingers.
So after thanking her for the kind and complimentary words, we sat down to watch the show. The Rosemary Kennedy School is a large facility and part of Nassau BOCES, and I’ve written about them in previous posts. They put on a terrific show, often collaborating with a sister schools that have violinists, etc. This year they did it all themselves; one of his classmates even played drums on a couple of songs.
Here’s an example of the show:
Mike participated in 6 songs. Six!!! It wasn’t that long ago that he would sit amongst the crowd with tissues or ear plugs in his ears, and wanted nothing more than to get off the stage. Yesterday he was a cool customer: composed, followed cues, sang, danced and I think for the first time in a long time, really enjoyed himself. He didn’t flinch when his classmates sang off-key or moved in a distracting manner. He wore a corsage, and at certain parts of the show wore a top hat, sunglasses (above picture) and a cowboy hat and bandanna. Getting him to wear props and decorations were struggles in years past.
I was truly impressed by his performance! Too bad we didn’t get to yell “Encore!”
I didn’t even mind when the parents in the row in front of me were talking while he delivered his signature “Come on America, let’s Rock n’ Roll!” punctuated with a fist pump.
Okay I was a little annoyed, but that didn’t diminish Mike great performance.
I received an email this morning from The Autism Action Coalition. Here are the primary points:
New Autism Rate: 1 in 88
Rumors are swirling that the federal government will release this Friday the next round of official autism prevalence statistics and the news will be grim, the “official” autism rate is expected to be 1 in 88, up from 1 in 110 in 2010, which was up from the 1 in 166 rate in 2008. Given the 4 to 1 ratio of boys to girls, the rate for boys is probably in the neighborhood of 1 in 48. The autism rate has doubled in four years. This is a public health catastrophe.
The federal autism research budget is the same now as it was in 2007. That means we are spending less for every case of autism now than we were five years ago.
The federal budget has increased by a trillion dollars a year since 2007, rising from $2.8 trillion to $3.8 trillion. That means we are making proportionally less effort on autism now than 5 years ago.
The following link is a “Take Action” button which will take you to a standardized letter which you can customize and send to your Senators as well as President Barack Obama:
Also, this from www.Salem-News.com:
CDC to Announce New Autism Rate of 1 in 88, and Believes CDC Likely to Declare ‘No Public Health Emergency’ and ‘No Epidemic’
Special thanks to: bloggingforautism.com
(WASHINGTON DC) – This week, the Canary Party expects CDC to announce a new autism prevalence rate of 1 in 88. As boys are diagnosed with autism at four times the rate of girls, this translates to 1 in 48 boys. That new rate would be an increase from the previous 1 in 110 reported two years ago by the CDC’s ADDM (Autism Developmental Disabilities Monitoring) Network. This would only be the latest uptick in the autism rate reported by CDC, as the disorder was diagnosed in 1 in 10,000 in the 1960s, and the rate was virtually zero before 1930.
The Canary Party also expects federal health authorities to continue to downplay the seriousness of the skyrocketing autism rate, just as they have done for the past two decades since the rate began rising dramatically. Canary Party Chairman and autism father Mark Blaxill, drawing on his own experience working with federal agencies on autism for many years, commented, “No matter how high the autism rate soars, the CDC’s continued denial of an autism epidemic is certitude comparable to death and taxes.”
History shows us that Polio was called epidemic when the rate was only one in 2,700. The American Academy of Pediatrics recently called trampoline injuries epidemic, even though that rate was only about one in 1,200 children for the year the those injuries were reported (1996). By these measures, The Canary Party holds the position that autism should have been declared an “epidemic” many years ago. Some have offered the excuse that only infectious diseases can be called epidemic, but as the CDC has announced that obesity is epidemic in the U.S., the Canary Party believes that this leaves the agency with no good explanation for failing to characterize autism as such.
Ginger Taylor, Executive Director of The Canary Party, echoes the questions that autism parents have been asking for years: “How did we go from one in 10,000 children born 50 years ago being diagnosed with autism to 1 in 88 diagnosed today? Why do the Centers for Disease Control refuse to call the avalanche of autism diagnoses in the U.S. anything more than an “urgent public health concern?” Why is the federal agency downplaying a national emergency with special wording created just for autism – Urgent Public Health Concern – a label that is not used to describe any of the thousands of other disorders and conditions the agency tracks? When dozens of published research papers and multiple congressional hearings have shown that the primary causes of autism are environmental, and include vaccines and their components, why has CDC failed to offer any advice to new parents on how to decrease the chance of a child developing autism? Why has CDC chosen not to even attempt to identify which children are the subset vulnerable to these environmental exposures so that they can be handled with greater care?”
Taylor further said, “We hold the CDC accountable for failing to warn parents about the risks of these exposures, and especially for CDC’s own bloated, one-size-fits-all vaccine schedule – which exploded in the late 80’s after vaccine makers were indemnified against litigation by Congress.”
Canary Party member Lisa Goes added, “The vaccine schedule – never tested for safety as a whole – is a vast, uncontrolled human experiment on a generation of children.”
The Canary Party calls on Americans to demand that federal health authorities call this what it is, an autism epidemic, and to demand that government take action to make our air, water, foods, medicines and vaccine program safer. Please contact your legislators and President Obama. www.usa.gov/Contact/Elected.shtml
Please spread the word and urge your legislators to take action to protect and work for the benefit of all children on the Autism Spectrum.
- New CDC Autism Rate: Expected to Increase to More Than 1 in 100 (beyondautismawareness.wordpress.com)
I want to try something here. I want the opportunity to brag about the other kids in our lives: the Siblings on the Spectrum, who truly are ‘Autism Heros’. As Parents on the Spectrum, a lot of our time revolves around our Autistic child. Now it’s time to shine a light on our other kids, who do so much, and mean so much to our families.
If you have a story, picture, video, or blog post about your Siblings on the Spectrum, please send it to me as a comment to this post, or if you are on Twitter, Tweet or DM me (@1andOnlyJustEd) with your brag, using the hashtag #AutismHeros. If you follow this blog on Facebook (Facebook.com/BeyondAutismAwareness) you can send your stuff to me that way. I will gladly publish a new post using your story, picture or video, using #AutismHeros as the title. (Please don’t use Pingback to send me your stuff. Thanks.)
All our kids are important, and they should be recognized. #AutismHeros
Nick, Mike and Tom: my three goofballs and each other’s best friends. Mike looks up to Nick and Tom for different things, and they both give him things that only brothers can. I am proud of both of them!!
Outsourcing to The Autistic Rather Than to India
Part of the reason autism has captivated Hollywood moviemakers more than other developmental disabilities is that, for all the difficulties it brings those who have it, it also gives some of them the ability to perform uncanny feats of brainpower: effortlessly memorizing train schedules or song lyrics, identifying the day of the week of any date in the past. Even among those who aren’t full-blown savants, many display an impressive ability, even a desire, to immerse themselves in what the rest of us would see as mind-numbingly boring, detail-oriented tasks.
What if we could turn that ability toward things besides memorizing train schedules? It’s not simply an abstract question: The vast majority of those with Asperger’s syndrome and high-functioning autism are unemployed. A few companies are trying to do just that, and all in the same sphere: software testing, the epitome of mind-numbing, detail-oriented work. The pioneer was a company called Specialisterne, started in 2004 by a Danish software engineer with an autistic son—it has since created offshoots in Iceland and Scotland. In 2008 a small nonprofit called Aspiritech in Chicago was started to put people with high-functioning autism and Asperger’s syndrome to work testing smartphone apps.
The newest entrant into the space in the U.S. is a Los Angeles-based software and design firm called Square One. The company has a small pilot program working to design a software-testing training program for people on the autism spectrum. The project grew out of conversations between company co-founder Chad Hahn and his wife, Shannon, who works with the developmentally disabled. Hahn, along with experts his wife led him to, has put together a software-testing curriculum that he’s now in the process of teaching to an inaugural class of three. The course he’s designed relies not on written instructions but on a software tool called iRise to create simulations of the sort of problems the trainees would confront in an actual work setting.
Hahn is also trying to develop a work environment that would be friendly to those on the autism spectrum, for whom the social interactions of a typical workplace can trigger paralyzing anxiety. For some people, Hahn says, that might mean ensuring that there’s a quiet room or a set of headphones they can put on to block out the buzz around them; for others it’s making sure there’s a counselor there to talk to whenever they need it. Hahn says he’s in talks with Warner Bros. and LegalZoom about software-testing contracts.
But what’s most original about Square One’s approach is how resolutely bottom-line-oriented Hahn is. Specialisterne only worked because of generous Danish subsidies for employing the developmentally disabled, and Aspiritech is a nonprofit. But for the time being Hahn is committed to the for-profit route.
A lot of software testing is done overseas by workers in India. The case Hahn makes is that his software testers will work for $15 to $20 an hour—pay comparable to, or even lower than, that of software testers in India, but right here in the U.S. After all, he points out, people with autism don’t have a lot of alternatives—when they do find work, it’s usually bagging groceries or sweeping hospital floors at the minimum wage.
Hahn, in other words, is proposing outsourcing to the developmentally disabled rather than the developing world. Asked whether it might be exploitative to pay people with a disability less than those without one for doing the same work, he says he doesn’t see it that way. For one thing, he says, Indian software testers aren’t exactly sweatshop labor; they make about $25 an hour. And if paying less makes the company able to hire the developmentally disabled in the first place, he doesn’t see a problem with it.
“I haven’t had one parent of an autistic child come to me and say this isn’t going to work,” he says. “They say, ‘This is a way for my child to make more money than they would have made otherwise, and allow them to be more independent.’ They worry, what is my child going to do when I’m gone? And this is kind of a way out.”
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.”
The Challenge of Driving With Asperger’sBy JOHN O’NEIL
Over the last two decades, researchers have examined the risks faced by young drivers with attention deficit hyperactivity disorder and tried to find ways to help them to learn to drive safely, an issue explored in this week’s Science Times. Now those researchers and driving instructors are finding themselves faced with a new challenge: the growing number of teenagers with Asperger syndrome and other forms of autism, conditions defined by deficits in social skills and obsessive interests that can make learning to drive especially difficult.
“Driving is a social act,’’ says Dr. Jamie Dow, the medical adviser for safety issues for Quebec’s government-run auto insurance and licensing agency. “It involves obeying rules and cooperating with other drivers.’’
For young people with Asperger’s, both parts of that equation can pose problems.
Obeying rules is generally a good thing, but can be taken too far if rules are applied inflexibly or without taking into context into account. For example, does a “Stop at White Line’’ sign mean that the line is where you should stop only if you need to stop — or that you should stop every time you come to it?
And cooperating with other drivers involves perhaps the hardest task for people with Asperger’s: reading nonverbal social cues. On the road, that happens through the “gestures’’ drivers make through the motion of their cars — by changing lanes boldly or hesitantly, for instance. Those motions amount to signals flashed from driver to driver so routinely that most people are hardly aware of the messages being sent about intention or mood.
“There’s some discussion in the field that driving in traffic is like reading a person’s face,” said Lissa Robins Kapust, of the DriveWise program at Beth Deaconess Medical Center in Boston. “The driving scene may be friendly, it may be frenetic, it may be angry.”
According to a survey conducted by Cecilia Feeley, a project manager at the Center for Advanced Infrastructure and Transportation at Rutgers University, only 24 percent of adults with autism — many of whom described themselves as “higher functioning” — said they were independent drivers, compared with 75 percent of the population as a whole.
But for many people, the surprise is that people with autism are driving at all. “Thirty years ago people didn’t think any kids with autism would be interested in driving, school or the other gender,’’ said Dr. Gary Gaffney, an associate professor of psychiatry at the University of Iowa College of Medicine. “Now we see they’re interested in all of the above. Now kids with Asperger’s syndrome are driving all the time, and we don’t really know the risks.”
A study led by Daniel J. Cox of the University of Virginia found high levels of concern among parents of teenagers who were on the autism spectrum. They cited worries about their children’s ability to concentrate, understand nonverbal communication and tolerate the unexpected. And while some techniques, like using a manual transmission, have been shown to be helpful in engaging teenagers with attention problems, they are not a good fit for people with Asperger’s, who often have trouble multitasking.
Kathleen Ryan, an instructor at Driving MBA, a school in Scottsdale, Ariz., said that keeping an open mind was important. “If you don’t go in thinking about their limits but think about their opportunity, they will never cease to surprise you,’’ she said.
Instructors of teenagers with Asperger’s tend to slow down the pace of instruction, breaking down tasks so they can be worked on one at a time. Ms. Ryan also includes time for role-playing situations that might fluster the student, like being pulled over by a police officer.
On the other hand, people working with teenagers with Asperger’s worry less about impulsive behavior. “It’s good that they’re more apt to follow the rules of the road,’’ said Dr. Patty Huang of the Children’s Hospital of Philadelphia. “They’re less likely to be reckless.”
Who’s Lighting It Up Blue?
Do you have a building or landmark that you would like to light up blue? Well register it at www.lightitupblue.org
Calling All Facebook Fans!
Have you RSVP’d to ‘Light it Up Blue’ on April 2nd? Be sure to visit this event page and share it with ALL of your friends! Let’s see how many people we can get!! You can also RSVP here!