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!
One of the things parents of Autistic children must learn is that they must be “all in” when it comes to taking on the lifelong gauntlet that is caring for their child. Quite often, parents feel like they are on an island, by circumstance or by choice, to do it all, and provide for all their child’s needs. Parents by necessity become the ultimate resource for their child’s care and development. But as the article below illustrates, and as John Lennon said in his song Beautiful Boy, “life is what happens when you’re busy making other plans.” We must care and support ourselves and our partners, before we can give of ourself to our children, both typical and developmentally delayed.
We will be stressed, we will be challenged, we will lose sleep and have our nerves frayed. We too need to be taken care of periodically; to have the burden made lighter even for a brief moment, and to be recharged, renewed. We need to be whole and to be loved in order to give that love and attention to our children who will need it more.
Support each other. Support our children.
The ‘swamp’ of autism: a challenged marriage and a child without a voice
Please click on this link to view the video about Carly’s Voice:
“I joked that the only thing I’d ever thought about writing is a suicide note.”
Arthur Fleischmann offers a little laugh as he says this. He’s talking about his decision to write a memoir, Carly’s Voice: Breaking Through Autism,with his 17-year-old, non-speaking autistic daughter. After ABC did a story about the life-altering breakthrough Carly had at the age of 10 – when she typed out the words “help teeth hurt” on a computer – publishers approached him to write the story.
Mr. Fleischmann’s wife of almost 25 years, Tammy Starr, hasn’t been able to read the book, which chronicles the hardships of their lives as the parents of three children, a 22-year-old son, Matthew, and fraternal twin 17-year-old daughters, Taryn and Carly, who was diagnosed with severe autism when she was 2. “The book is too painful to read,” Ms. Starr says.
Mr. Fleischmann says, “I didn’t want the gauzy optimism so many working-through-hardship books have. You had to go through the swamp with us to be able to experience the breakthrough.”
That “swamp” was the heartbreaking discovery that their child was so disabled their lives would never be normal again. Medical assessments of Carly from an early age are included in the book. The clinical language is chillingly stark. Doctors held out little hope for her to lead a productive life. She needed therapy to accomplish the most basic skills – rolling over, crawling, walking. She has never been able to talk. The description of Carly as a young child is unimaginable to most – emptying out closets, stripping off her clothes, braying, having tantrums, smearing feces.
But Carly wasn’t her parents’ only challenge. Ms. Starr has endured two bouts of cancer (non-Hodgkin’s lymphoma) – the first time in 1997, around the same time Carly was diagnosed with autism – and again in 2008. “Somebody once said to me, ‘You must have done something awful in a previous life to deserve all this bad karma,’ ” she says. “Nice, eh?”
The story here is the portrait of a marriage under extreme challenges. Mr. Fleischmann and Ms. Starr are seated across a table from each other in a boardroom of John St., an advertising agency of which he is a founding partner. A bright splash of modern art covers one wall. The lights above the table are a sculptural jumble of bare light bulbs, fluorescent tubes and shiny bits. The room is childlike and exuberant – the complete opposite of the mood between the couple, who have a sombre, shell-shocked manner. It’s the look of people who have seen more than most. It’s clear that their marriage bond is made of far more than mere love: determination, necessity, hope, acceptance. And a dose of sardonic, black humour to help them cope.
“I never understood the stronger bit,” Mr. Fleischmann says when asked if he believes the adage about adversity creating resiliency.
“Because we’ve been through so much,” Ms. Starr says, referring to her cancer.
“It’s actually very dehumanizing,” he explains. “You become robotic.”
Was Ms. Starr against the book?
“Well, she was, but only after it was written,” he says.
The book, which took three years to complete, put him though “emotional wreckage,” he says, adding that he decided to do it to “amplify Carly’s voice” as she has now become an activist helping people understand the challenges of autism and the importance of understanding and hope.
“I go back and forth,” Ms. Starr says. “We didn’t include many things. Like my deeper, darker thoughts.”
“Then write your own book,” he replies, his voice not unkind, just observational and neutral.
Nothing is sugar-coated between them. They don’t have the luxury of denying reality. Ms. Starr stayed home with the children and has suffered from depression.
“He has the happy gene,” she says, meaning that difficulties don’t easily overwhelm her husband.
“And you don’t,” he says, looking at her.
When asked how the autism of their child has affected their union, Ms. Starr has a quick answer: “We seek help. We met when we were 19 and 20 years old, and we have just grown up together in all of this.”
“You’re virtually assured of divorce if you have a disabled kid,” Mr. Fleischmann says.
“Or even twins. And then add a disability. It’s like 80 per cent,” she says, placing the fact on the table calmly like a nice piece of cake.
“I have heard two stories when parents euthanized their [autistic] kid and then killed themselves,” he says – his peaceful offering of chocolate chip cookies.
But if the couple present an unvarnished truth about the challenges in their relationship, they are also a remarkable testament to the commitment and love some parents have. They never gave up the fight to reach their daughter and refused to consider a group home even though many people suggested it. “We could see something in her eyes. Something was going on there. She had hours and hours of wildness, but she also had incredible moments of quiet,” Mr. Fleischmann says. “If she had been more placid, we might have backed off.”
“I used to say it would be so much easier if she was just a lump,” his wife says. “Because the minute your child shows you something, you want more, so there’s never a point where you’re willing to stop.”
The breakthrough came when Carly was 10 and was working with her tireless therapists, Barb Nash-Fenton and Howard Dalal. Her parents were on spring break in Arizona. The family often travelled without her because the logistics were too difficult.
Mr. Fleischmann and Ms. Starr were skeptical at first, but soon it became obvious that their daughter was intelligent – and had a voice – that had been trapped inside for years. At one point, asked to type five words for a promised reward of a snack – a common motivational strategy for autistic children – she produced a small smile and typed “five words.” Her therapists laughed and gave her the snack. Carly’s typed response: “Just give me the bloody chips okay.” As her father writes in the book, “As years of noisy silence died, a prima donna was born.”
“Once she could communicate, her view of herself and the world’s view of her changed 180 degrees,” he explains. For her bat mitzvah, she wrote a speech on her computer, and then asked her parents if they could get Ellen DeGeneres to read it. “We didn’t even know she knew who Ellen was,” her father marvels. They were able to arrange for the talk-show host to read the speech aloud at the family celebration via satellite.
With more than 30,000 Facebook friends and 25,000 followers on Twitter, Carly helps to explain behavioural issues that have mystified experts. “She shows how these kids are misunderstood,” her mother explains. “Even when I went with her to Sick Kids, they wrote down that she was self-injurious. But she has [since] explained that she was slapping her hand to keep it from doing something she didn’t want to do. She was trying to control her impulses.”
Now in a mainstream high school, where she takes many gifted classes, Carly dreams of going to university – in particular, the University of Southern California. “We have always had to worry about what does Carly’s life look like in the future,” Mr. Fleischmann says. “Our assumption is that she won’t ever be 100 per cent independent. It’s a planning exercise. … But I have gained some confidence that we have solved so many problems, we can solve that one too.”
They have dreams for their daughter. Every day, Carly wakes up with the hope that she will be able to talk. “That’s my wish too,” her mother says.
Rethinking Autism As A ‘Whole Body’ Condition
We often think of autism as a disorder of the brain. And it certainly is. But a new book, “The Autism Revolution,” (Random House) by Dr. Martha Herbert, an autism expert and pediatric neurologist at Massachusetts General Hospital, and CommonHealth writer Karen Weintraub asserts a more comprehensive and wholistic view in which autism is really a condition of the whole body and should be treated with that in mind.
Here is an excerpt from the book:
Chapter 1: Go for the Extraordinary
Caleb tore himself away from a game with his sisters, bounced into the kitchen and asked his mom what she was making for dinner. It was one of his favorites: gluten-free pasta and ground beef.
He started to turn back to the girls, but paused. “Mom,” he said, as casually as if he were commenting on the weather, “my autism is gone.”
“How do you know?” his astonished mother managed to ask.
“It’s easy to be with people now,” the 10-year-old said matter-of-factly, and then headed back to his younger sisters.
Joy Petersen stared, dumbfounded for a few seconds in the middle of the kitchen. It wasn’t until two months later that she realized he was right.
Caleb has his father’s bright blue eyes, his mother’s dark hair and a complexion that reflects his mixed Dominican-American heritage. He is still looking up at 5 feet, and his voice remains a little boy’s for now. He wants to be a zoologist when he grows up, and is already talking about going away to college, although he understands that his parents will be sad to see him go.
She recently took him to a new doctor, a specialist in treating children with autism and other special needs. Caleb noticed the photographs covering the doctor’s wall, and asked why the doctor was holding a gun in one of them. After talking to Caleb and his parents for a while, the doctor announced that Caleb didn’t fit the criteria for autism anymore. “Yeah!” Caleb said, jumping up and pumping his arms. His mother began to sob uncontrollably.
Joy used to dream of the day someone would say her son was no longer autistic. Of the day he’d come up to her, say he loved her and really mean it.
That day was unimaginable when Caleb was 4, still had no language, and was so afraid that he would wail and cry when anyone other than his parents came within 5 feet. Joy said she would put her fingertips on his body and he would scream as if somebody had hit him. Taking care of Caleb was so overwhelming that she would often find herself in tears. There were times when she was so afraid of hurting him in her anger and stress, that she’d put him down, walk into her bedroom, shut herself in her closet and collapse on the floor, crying.
The doctors and therapists told her she had to be realistic. Your son will probably be like this forever, they said. You can try lots of different things, but none has been proven to work.
Joy decided to start trying them anyway. And to her surprise, everything seemed to work, at least a little. No one thing took the autism away, she said, but all of it put together helped a lot.
By the time Caleb was in first grade, everyone thought she’d succeeded. He was able to follow simple instructions. His repetitive behaviors – the spinning, stick tapping and high-pitched noises – had mostly stopped. He was able to sit in a mainstream classroom with an aide. This is as good as he’s going to get, they told Joy. You’ve done the best you can.
But she wasn’t satisfied. Her heart told her that there was more to do.
“I still had a disconnected boy,” she said.
“People would tell me he’s high functioning, he follows directions – and I’m like that’s not what I want…I want a boy I can look in the eye and I tell him I love him, and he knows what I’m saying…I want a boy who can look me in the eye and tell me he loves me…I want a boy who can take in the world and absorb it, not run away from it…Absorb it, not run away from it,” she repeats for extra emphasis.
She has that boy now.
See what we believe or believe what we see
For decades, doctors have told parents that autism was a genetic problem in their child’s brain, and that it wasn’t going anywhere – that they should expect their toddler’s troubles would be with him/her forever. Autism has long been defined by its deficits, by what the child is believed unable to do: communicate, control himself, function like everyone else. Parents might make improvements around the edges – reduce the tantrums, limit the crazy behaviors, get the child to follow directions – but the essential deficits would remain.
After years of researching autism and treating patients at Massachusetts General Hospital, after years of meeting children like Caleb, I have come to the conclusion that these views simply can’t be right.
(Dr. Martha Herbert, MGH, asserts that autism is a ‘whole body’ condition. Photo: Adrian Jones)
I have met many, many people like Caleb who are doing remarkably well, often after making improvements more dramatic than anyone ever dreamed possible. Some showed amazing bursts of improvement, transforming from nonverbal and withdrawn to A-student with lots of friends. Some reached adulthood with a stable job and just a few quirks. Some still can’t talk but communicate through painting, music, glassblowing or eloquent words typed on a keyboard. Some, now adults, are professionals, parents, artists, friends, or all of the above.
It may be difficult to imagine now, as you are struggling to help a 4-year-old who screams more than he speaks, but many people with autism have grown up to lead fulfilling productive lives.
The more I worked with my patients, the more I realized I had a choice: to “see what I believed,” or to “believe what I see.” If I believed that autism was a genetically determined, lifelong brain impairment, then I would have to deny to myself the extraordinary capabilities and changes I saw in my patients. If I believed what I saw, then I would have to re-think everything I knew about autism.
That’s what I proceeded to do, and you are reading the result of that exploration.
For going on a decade and a half, I have thrown myself into taking a fresh look at autism. I have probed into generations of science, and compared the research with the theories built around this evidence. I have been inspired by a growing body of exciting new findings and new areas of research, which points to new ways of helping people with autism. And I have allowed myself to be touched by people with autism who offered me fresh perspectives and ideas and expanded my world.
More than genes and brain: also whole body and environment
In all my research and reading, I have never found proof of the genes-hopelessly-mess-up-the-brain-for-life model of autism. Genes absolutely affect the brain, but there’s no solid proof that they’re the only players.
Geneticists have been searching for autism’s “smoking gun” for more than a decade, but have only identified genetic “defects” in a small minority of people with autism – leaving the vast majority of autism genetically unexplained.
Meanwhile babies who seem normal for the first year or two, regress into autism. Scientists used to believe that all autism was caused by brain damage before birth. Some children with autism do seem different from the start. But a lot of children appear perfectly fine before slipping away over weeks or months. Studies of home videos and direct observations have confirmed that this occurs. Regression into autism makes it hard to just blame genes that kick in late, and makes you wonder about whether environmental stressors play a role too.
And many children do get better. There is no proof for the common assumption that if the diagnosis involves a genetic mutation – like Fragile X or Idic 15, or others presumed present but not found yet – that means the person is frozen with “impairment” and “deficits” for life. In 2008, I was among a group of researchers who published an article called “Can children with autism recover? If so, how?” Some of these researchers had shown that between 3 and 25 percent of children once diagnosed with autism are eventually told they do not have the condition. They gathered a group of scientists together to ask how this could happen. Their genes certainly don’t change in a few years, so they were either misdiagnosed or, like Caleb – who was rigorously diagnosed – after lots of treatment, their symptoms faded so much that they no longer belonged on the autism spectrum.
Autism can even change over minutes, hours or days – and then change back. Children with fever or on steroids for a medical problem like asthma can show improvements in communication and social interaction, which fade after the fever goes away or the steroids are stopped. If autism were totally genetically hardwired this couldn’t happen.
Meanwhile genetics cannot explain the rising frequency of the condition. When I first got involved in autism research in 1995, people thought that 1 out of every 3,300 children had autism. As I write, the figures are approaching 1 in 100. Genes take generations to evolve, so either we have been oblivious to autism, or something other than genetics is causing autism more often. There is still some debate about whether autism is truly rising or whether factors like greater awareness and diagnosing people we would have missed in the past are causing the increase. But more and more reputable studies are finding that at least half of the surge can’t be explained away.
By now, most researchers agree that genes don’t act on their own to cause autism. Genes may lead to vulnerability – they may “load the gun” — but so much of the time, it’s environment that “pulls the trigger.”
Finally, although I’m a Harvard neurologist – an expert in the brain and nervous system – I have come to believe that just as autism is not simply a genetics problem, it is not simply a brain problem, either. Autism involves the whole body. As a physician, I’ve seen so many autistic children with similar medical problems that I can’t believe it’s just a coincidence. And we know through thousands of scientific papers and an ocean of clinical experience that the health of the body can affect the function of the brain.
At this point, I think there is enough evidence to say that while autism certainly involves the brain, it is really a problem of the whole body, including the brain, from molecules to cells, from organs to metabolism, from immune to digestive systems.
An autism revolution
If you add environment to genes, add body to brain, take seriously the powerful brilliance of many people with autism and the profound transformations and loss of diagnoses we are seeing more and more, you get a very different story than the “hopeless-genetic-lifelong-brain-damage” tale that most of us thought was the truth.
The story you get is of problems that can be solved, illness that can be healed, and extraordinary capabilities that can come out of hiding and make powerful impacts on the world.
Caleb got better because his mother was persistent and she believed in his full potential even when everyone told her he had improved enough. If he could really get better, how many other kids can get better too? How many others have hidden brilliance that the world needs to see? My commitment is to transform autism so everyone has their best shot at becoming all they can be. I know so many children like Caleb and so many brilliant and fulfilled people with autism that I feel ethically obliged to tell these stories so we can figure out what makes them possible. Armed with this knowledge, we can go forward and make this great opportunity accessible to as many people as possible.
We can’t afford not to have an autism revolution
It’s terrifying to imagine our future without this revolution.
The financial costs alone of raising our autistic children are staggering, with estimates ranging from $35 billion to $90 billion per year just in the United States. That assumes autism rates stop increasing, which they haven’t yet. And of course, children with autism usually grow into adults with autism, so those costs will be with us for decades if we don’t take action. At a time when America is still reeling from recession and when budget cutting seems to be the nation’s top priority, what will we do if there is not enough to go around to give everyone the help they need? Wouldn’t it be a good idea to address autism early and effectively?
If we continue to believe that autism is a lifelong hopeless condition we will be patient with slow progress because we won’t see how you might fundamentally help people. When we see people with autism improving, we will deny that they had autism to begin with. This kind of circular thinking breeds inertia, countless missed opportunities and lost dreams that damage not just the individuals who are left behind but the fabric of our whole society. More and more people will be autistic, more hearts broken and more counties and states bankrupted.
Now take a moment to envision a world where everyone believes that there are many parts of autism we can do something about, and that when people with autism are transformed, it is real and has something vital to teach us. Think about the energy and resources we would pour into tackling solvable problems. Imagine all the loving and happy family interactions, the creative brilliance unleashed and the benefit to all society.
Thousands of children like Caleb are teaching us the paths to success. They did it in spite of a system that told them they couldn’t, and shouldn’t. Imagine what we could do if we took these successes seriously and learned how to achieve them better and for many more people.
I believe that autism is not a genetic tragedy, but an unfolding and unprecedented catastrophe, related to many other health and environmental crises. Our world is making us sick. We need to build a world that makes us healthy.
Remember that for your child you are a path-breaker. You may become a path-breaker for others as well. The first step is perhaps the most potent: Take a stand with hope that your child can change, not just a little bit, but profoundly. Joy stayed firm with the vision that her son could get the most out of life. You can do this too.
Caleb got a lot better, many other children get a lot better, and your child may too. These experiences can teach others how to become healthy, move beyond autism, and fulfill their potential to be extraordinary.
As many parents on the Spectrum have begun to face the realization that their children are transitioning out of, or ‘aging out of’, their school districts, it is comforting to know that there are many colleges that have recognized that Autistic students can be effective and productive learners. They recognize that meeting many of the social needs of students will have a positive influence on their academic careers.
Colleges Reach Out
When he first arrived at Fairleigh Dickinson University, Brian Schwanwede of River Edge felt afraid “to the point of paralysis.” Schwanwede, who has Asperger’s syndrome, didn’t know how to join campus groups or make friends, and he had trouble keeping up with his assignments.
Then he discovered FDU’s Compass Program, which is designed to help students like him integrate into campus life. He walked into the first session and immediately found people who understood him. He is now a sophomore honors student who is active in campus activities.
Stefanie Ulrich, director of FDU’s Center for Psychological Services, says she hears similar success stories all the time. “Some of the kids first come here and they’re crying all day and unable to leave their rooms.” After the program, they become more gregarious, join clubs and graduate with confidence.
Students with Asperger’s — an autism spectrum disorder characterized by serious difficulties with social interaction — face difficult challenges in a college environment. Although people with Asperger’s are often highly intelligent, they are also likely to have limited interests, miss social cues and have difficulty living away from home.
The number of students diagnosed with Asperger’s is likely to grow in the coming years because, experts say, the condition is being better diagnosed. There is no known cause for autism, which affects 1 out of every 110 children.
As a result of the influx of students with Asperger’s, K-12 schools have been at the forefront of creating new programs for students with the condition and more severe forms of autism. Now, as more students with Asperger’s go on to higher education, college officials are trying to figure out what kind of help they need to provide.
David Nast, director of the Office of Specialized Services at Ramapo College, said students with Asperger’s make up the school’s fastest-growing population.
“It’s a particular challenge for our department because the issues they face go beyond the classroom. They need more social accommodations than academic accommodations,” he said.
Some youngsters with Asperger’s cannot even live away from home, said Vincent Varrassi, a Westwood-based consultant for students with disabilities. Those who can live away from home might need help making friends, advice on organizing a weekly calendar and tutoring to succeed.
Lawrence Kaplan, chief executive officer of the U.S. Autism and Asperger Association, said every college program is different and they are not all up to par.
“Many colleges have programs, but the support may not be what it should be,” Kaplan said. “While these kids may do extremely well academically in high school, they may have a tougher time in college because of a lack of support in college, and end up moving back home.”
Support for students suffering from physical or learning disabilities, such as tutoring, ramps and elevators, has long existed on college campuses, but programs for students with Asperger’s were only created in the past five years, said Dania Jekel, the executive director of the Asperger’s Association of New England.
Before that, many college students with Asperger’s relied on the more traditional disability services. But that rarely solved the social and organizational problems these students encountered. As a result, they had a high dropout rate.
While experts welcome the new programs, they caution that they have their limitations. Some students may suffer from such severe disabilities that they won’t be able to succeed away from home, and some colleges will not have the resources to provide the individualized attention that many Asperger’s students need, Jekel said.
What makes it even more difficult for Asperger’s students is that they develop more slowly than their peers. They are less mature socially at age 17 and therefore less likely to be accepted by their college classmates.
For students who find it just too difficult to live with a roommate, Rutgers and Ramapo allow students with Asperger’s to live in single rooms. Rutgers also offers students with autism spectrum disorders special faculty support and other accommodations.
Montclair State University runs a social skills training group as well as a peer mentoring group to help Asperger’s students make friends and learn how to interact socially, said Linda Smith, director of the Disability Resource Center. Counseling is provided when needed.
Nicole D’Angelo, a Montclair State student majoring in music who has been diagnosed with Asperger’s, said the social group is among her favorite activities on campus.
“We meet every week, and it helps us for any of our social issues,” she said. “It’s great to come here and meet others who have the same thing. We bonded through our disability.”