Thursday, April 23, 2009


Dear Friends,

I have been a part of this social network since July 2008 and already I have thousands of friends and followers - I think it really shows how eager people are to connect with others around the globe who are sharing a common experience, my experience is with autism. I have a grandson named Zackary who was diagnosed with low functioning autism from a young age. I wanted to use this website to stay connected with my family, my friends, and people who I have met that are affected by autism in their lives.

One day I sent out a question about autism and to my surprise I received a lot of replies, which I really appreciated! I was amazed at how many strangers wanted to help me find the solution to an issue I noticed in my Grandson, these strangers really touched my heart. A few weeks later I came across some very interesting world news about autism and posted it on my page, it also got a huge response. Not only were people interested in giving me their personal help, but they were hungry for new sources of information about the autism spectrum. From that point until now, I continue to be shocked at how quickly my circle of friends and followers has grown - in these few months I am almost half way to the limit of friends in FaceBook.

There was something very interesting about this phenomenal response in my social network. Everyday, through my web page, I receive two basic types of private messages. The first type of message relays stories of how parents are benefiting from information I provide on my web page. The second type of message is from people who cannot understand English very well, but they really want to understand what everyone else is chatting about. They need this information to help them deal with their personal challenges with the autism spectrum. Personally I don't like to leave people behind when I know they need help - I wasn't left behind when I posed my first question about autism, and I really needed the help too. Even though I am a computer programmer, and my company (People CD, Inc.) developed the first and only web browser designed specifically for use by children with autism (ZAC Browser), I still have many questions about living with autism in my family.

Once again, just as I was compelled to develop ZAC Browser, I was feeling like my computer skills could help others who's lives are touched by the autism spectrum. So, after a lot brainstorming I am extremely excited to announce the creation of The Autism News - the ideal place to find information, news, open discussions and build friendships with other parents in touch with autism. All of the information found on The Autism News website ( is translatable into many languages to make it extremely user friendly to parents globally. Just like ZAC Browser, The Autism News, is a completely free service - and the registration process is simple and quick.

Big hugs to you all,

Quick Q & A

- What is the benefit of The Autism News?

All the information in contained on The Autism News website is accessible to readers in as many as 40 different languages. This way more and more families will access the information, news and open discussions.

- How do I register to use The Autism News?

Registration is 100% FREE. You can register at: Once you add your username and e-mail address you will receive your password by e-mail. It's that easy and will require only a few seconds of your time. This is our way of filtering spam

- How will the questions of the day and open discussions will be handled from now on?

We will send the information from Facebook, MySpace, and other social network, and you will reach the questions or open discussion on You will be able to send your comments to others when you are registered with The Autism News.

- Where do I submit questions, request help or open discussions ideas?

Visit: and select: The Autism News department. Add your name, e-mail address, question or open discussion in the message area and click send. We will send you an e-mail when your question is published in The Autism News.

This website will no longer submit new article - We are moving all our news to -

Wednesday, April 22, 2009

Complaint filed against RNC after autistic teen jailed

Dane Spurrell was taken into custody this weekend, after Royal Newfoundland Constabulary officers assumed he was drunk. (CBC)

By CBC News

The mother of an autistic teenager from Mount Pearl has filed a formal complaint against the Royal Newfoundland Constabulary, accusing the police of wrongfully jailing her son this weekend after mistaking symptoms of his autism for drunkenness.

Diane Spurrell discovered her son Dane, 18, had been put in the local lock-up Saturday night after she called 9-1-1 at 5 a.m. to report him missing.

Dane Spurrell said he was returning home from the video store in Mount Pearl when police approached him on a stretch of Topsail Rd. and told him to get onto the sidewalk.

Spurrell said he explained there was no sidewalk in that area, and soon after, the police asked to smell his breath.

"Because of the way that I am, they just assumed … I was drunk — [because of] the way that I was walking and speaking," he said.

Spurrell admits he resisted the police because he felt he hadn't done anything wrong.

Mother Diane Spurrell says she has been told the deputy chief of the RNC will visit her later this week. (CBC)

"They were like, 'Get in the car.' They were grabbing me and tossing me around and shaking me, and eventually, they got me down on the ground," he said.

Diane Spurrell said when she heard the details of the incident, she knew they had mistaken his autistic behavior for drunkenness.

"From what he told me, they just didn't listen to him at all," she said. "They didn't give him an opportunity to explain himself. They denied him the opportunity to phone me."

Diane Spurrell said she has been told that the RNC's deputy chief will visit her at home on Thursday.

An RNC spokesperson said the police are investigating the incident.

As for Dane, he said he is not traumatized by the misunderstanding or by his unexpected night in jail.


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Nobody gives you a manual: Experimentation key as Destin family grapples with autism

By Jennifer Rich, Destin Log

When little Skylar Watson gets off of the school bus at her Indian Bayou home in the afternoon, she does what many six-year-olds do.

She gets a snack, plays in the back yard, watches Hannah Montana or plays with her special friend, Karen.

It has taken more than a year to reach this seemingly normal routine, since parents Ray and Tina Watson received the news early last year — news that Skylar has autism.

“It’s a lot of extra work,” Tina said. “It’s a whole lot of things that you can’t really imagine until you live through it.”

Autism is a brain development disorder that impairs social interaction and communication skills, and is characterized by repetitive behavior. Symptoms can be mild to severe, making it a spectrum disorder that one in 150 children are diagnosed with.

The diagnosis sounds gloomy, but the Watsons have mastered the old cliché of turning lemons into lemonade. Skylar’s autism has taught the family how to embrace healthy living.

“As a baby, she was a normal thriving infant,” Tina said, as she shuffled through Skylar’s baby photos.

Before the age of two, the couple noticed that Skylar did not seem to be processing what was said to her. They realized that the “terrible twos” were something more when Skylar was not expressing pain or fear, and her younger brother Kruz, now 5, began transcending her in development.

“She didn’t engage in toys,” Tina said. “She would just throw them.”

Skylar was 16-months-old when Ray and Tina really suspected something was not right. It occurred one afternoon when Skylar was not cooperating well with gym play at U.S. Gold Gymnastics and Cheerleading.

The pair began researching Skylar’s behavior and taking her to see doctors. It was still early for an autism diagnosis at the time, but their suspicions were confirmed just over a year ago.

As Ray and Tina have educated themselves about their daughter’s disorder, they have adopted the ideals of the DAN project, a protocol to “Defeat Autism Now” through biomedical factors.

DAN doctors preach that an autistic child’s environment plays a key role in how well he or she copes with the disorder.

The Watson’s have taken the beliefs to heart.

Ray has ripped out almost all of the carpet from their home, and furniture is mostly leather to rid the home of allergens. Tina ensures that

Skylar’s diet is completely organic and free of gluten and casein (wheat and dairy products), another tactic for coping with autism.

Skylar has also been receiving ABA, or applied behavioral analysis, sessions with a board certified behavior analyst, Karen Reid, three days a week since January.

“We work on language skills, potty training, behavioral difficulties and attention,” Karen said.

Karen uses toys called “reinforcements” and flash cards to help Skylar learn basic principles of speech and counting.

“They (behavior analysts) have the patience of saints,” said Myra Fowler, president of the Emerald Coast Autism Society. Fowler immersed herself in autism when her son was diagnosed and has since become acquainted with the Watsons through her organization that is hosting the Walk 4 Autism Awareness on Saturday in Niceville.

Much controversy exists on what causes autism. Many believe the cause is genetic and others say environmental factors play a role. The proper treatments get just as much scrutiny, but the Watsons have found that experimenting is necessary to find out what works.

“Nobody really knows the cause, and nobody really knows the cure,” Myra said.

Ray and Tina credit hyperbaric chamber treatments, where pressure is increased in an attempt to boost the amount of oxygen in the child’s brain, for the most dramatic change in Skylar’s progress.

The couple splurged on a Vitaeris 320 hyperbaric chamber that came with the whopping price tag of $23,000, but the couple said “we have seen a return on Skylar.”

They made the investment in January 2008 after making monthly trips to Miracle Mountain, a hyperbaric treatment facility in North Carolina. Ray said that treatments in a hyperbaric chamber can cost $300 an hour. They now do them at home for a fraction of the cost.

“It’s no miracle pill,” Tina said, stressing that early detection is the key.

However, her enthusiasm for the chamber’s effects is undeniable.

Tina said they are blessed to have the hyperbaric chamber, Karen and the support of other parents of autistic children.

“Nobody gives you a manual,” Fowler said.


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Tuesday, April 21, 2009

Man Convicted of Hurting Boy with Autism During Exorcism

By the Associated Press

A man who says he tried to cast demons from a 14-year-old autistic boy from southern Indiana has been convicted on charges that he injured the teen during the exorcism.

A Monroe County jury on Tuesday found 24-year-old Eddie Uyesugi guilty of felony charges of battery and criminal confinement.

Uyesugi testified during his trial that he genuinely was trying to help the Bloomington boy and punched him in the face and chest to restrain him during the 2007 ceremony.

He was a minister in training at Cherry Hill Christian Center in Bloomington, but its pastors testified that Uyesugi's actions were inappropriate. Testimony showed the boy's grandmother sought the exorcism for the teen, who sustained bruises and two black eyes.

Uyesugi faces prison terms of two to eight years on each count.


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Guide dogs excel in new mission: autism

By Brian J. Howard by LoHud

OSSINING - There were a few secrets being kept the day Tricia Zarro invited a guide-dog trainer to her home in January 2008 to talk about finding a canine companion for her son.

Zarro hadn't yet told her husband, Ernie, or their three children that the meeting was about getting a specially trained dog for Danny, 6, their youngest, whose condition was diagnosed as autism.

Meanwhile, the trainer Caroline McCabe-Sandler of the Yorktown-based Guiding Eyes for the Blind, didn't tell Zarro she had the perfect dog in mind.

After the meeting, as Zarro walked McCabe-Sandler to her car at the end of the driveway, she turned and made a heartfelt plea.

"I just want this dog to help my family heal," Zarro said.

That's when McCabe-Sandler confided in her about Shade, a 2-year-old black Labrador who had essentially flunked out of guide-dog training.

Yet "flunked" might be too harsh a word for a dog who displayed nearly every trait necessary for providing the assistance and companionship needed by those without sight.

She was just too tentative in situations that call for split decisions.

By any other measure, Shade, who joined the Zarro family March 28, 2008, is the perfect dog.

"I never even let Ernie or the kids in on this," Zarro said. "It was such a dream."

Heeling Autism, a fledgling Guiding Eyes program, has since placed six more autism-service dogs with families.

The dogs' purpose is to provide safety and therapeutic companionship to children with autism, a neurological disorder marked by delays in speech and social interaction.

Each dog's training costs roughly $45,000. As with the guide dogs that the nonprofit Guiding Eyes trains and places, its autism-service dogs are provided free, with the cost entirely offset by private grants and donations.

While autism-service dogs are becoming more prevalent, many organizations that provide them require families to pay $10,000 to $15,000.

From a therapeutic standpoint, the dog serves as a point of focus for autistic children, enabling them to maintain calm.

From a safety perspective, the dogs wear a service vest to which the child is tethered while in public places.

Zarro described seeing Danny and Shade walk through Manhattan, with her holding Shade's leash as Danny walked safely alongside.

The result is freedom for both parent and child.

Routine outings to stores or to the sports events of older sisters Madeline and Kylie are made more manageable and more enjoyable with Shade's help.

On family hikes, Danny no longer straggles or needs to be carried.

The Guiding Eyes program emphasizes the entire family's acceptance of a service dog, a key benefit, Ernie Zarro said.

Despite his worries, he said his daughters have become both protective and proud of Shade.

"You always think about Danny and the dog, but you don't think about how attached the girls would become," he said.

Shade sleeps in Danny's room, keeps a watchful eye on him around the house, and is there with him during doctor's visits and therapy.

On a recent afternoon, the 65-pound dog gamely hopped up on the family's backyard trampoline, looking unsure of her footing but determined to stay near Danny, who bounced spryly while belting out "Hound Dog."

Little about Danny suggests autism. He smiles, laughs and is quite verbal.

Much of his progress is attributable to his tightknit, adoring family and a constant whirlwind of therapies: speech, physical and occupational.

And then there's Shade, who is there for Danny, helping him reach his potential.

When Tricia Zarro wrote to Guiding Eyes about obtaining a dog who hadn't completed guide-dog training, Heeling Autism didn't yet exist.

A year and a half passed before she heard from McCabe-Sandler, who in the meantime had attended an Assistance Dogs International conference in Toronto in 2007.

There she heard a talk by Maureen Morin, the mother of one of the first children to receive a trained autism dog.

McCabe-Sandler said the idea just clicked.

Guiding Eyes was seeking ways to expand its community mission and to make the most of the training given to dogs who don't become guides.

"We had this incredible group of dogs that we could do more with," she said.

Mary Jo Jacobs' family was the last in the Heeling Autism's pilot program, which placed seven dogs in the greater New York area. Jacobs' son Andrew, 9, received Iota, a 3-year-old black Labrador, on Feb. 20.

"Andrew's getting so much affection," said Jacobs, a New Rochelle mother of four. "He's relating so much to the dog. He always wants to be with him, and he pulls him up close."

Like Danny, Andrew does not take his dog to school, though autism-service dogs merit the same full public access as guide dogs.

One of Iota's benefits to Andrew has been the way the dog fosters communication. Andrew eagerly shares an array of details and stories to others about his dog.

"For him to use the dog to talk about the dog so that he's got a conversation starter is a huge plus," Jacobs said. "Anything else is icing on the cake."

McCabe-Sandler has observed the change the dogs she trains make, not only on the children, but also on their families as a whole.

The best example is the way the dogs can simply make the children laugh.

"I'm a mom, and it's so easy to get my children to laugh," she said. "For those parents, it's not. So to see these spontaneous bursts of laughter, it's just magic to me."


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Monday, April 20, 2009

Pupil with Asperger's syndrome rejected by school

Alex Goodenough, who has Asperger's syndrome, with his mother, Joan, after winning a place at Cambridge University. Photograph: Graham Turner/Guardian

By Haroon Siddique - The Guardian

A teenager who was refused a place at his local school because he has Asperger's syndrome has won a conditional offer to study engineering at Cambridge.

Alex Goodenough, 17, taught himself at home from textbooks after Hertfordshire and Essex high school and science college (H&E) rejected his application to study there.

A special educational needs and disability tribunal ordered the school to apologise to Alex for treating him less favourably "for a reason related to his disability".

According to the National Autistic Society, children with Asperger's syndrome face "huge battles to get the education support that should be theirs by right, often at considerable emotional and financial expense".

More tribunal cases concern autism, of which Asperger's is a type, than any other type of special educational need.

The schoolboy said he used the school's refusal as motivation and achieved As in three maths subjects and some physics modules. Now he is at another school, studying for the practical physics exam, which he could not take while learning from home and is a condition of his offer from Trinity college, Cambridge.

He said: "Maybe my story at least shows people that even if institutions put this bar up and won't help you and give you an environment where you can be comfortable, at least with enough work and luck you can still do well." Jan Goodenough, Alex's mother, said: "If somebody causes damage to another human being in terms of injury or damaging their career there's compensation, but for special educational needs people there's nothing. It took an enormous amount of time and effort. The only reason I did it was I knew it was so wrong and I wanted justice."

Alex completed his first year of A-levels a year early at another school where his mother, now an educational consultant, was teaching at the time. But after she left the school she contacted H&E in June 2007 to enrol Alex there because the specialist science college was walking distance from their home in Bishop's Stortford.

Over several months she had contact with five different school officials.

H&E initially rejected the application on the basis that Goodenough could not guarantee Alex's "regular attendance", a result of his condition.

While the tribunal panel accepted that there were "misunderstandings" between Goodenough and the school initially, it found that H&E refused to send her an application form and on three separate occasions incorrectly told her the sixth form was full, which "may have been intended to discourage Ms Goodenough". It said Alex's education was "probably adversely affected".

Alex said he was denied social interaction through studying at home.

"If I am at school I have got people around me, if I am not allowed to attend I don't have that connection," he said.

Goodenough said: "When he was sitting at home after being rejected he went through a really bad time. It almost amounted to agoraphobia because he was missing out on social contact."

The school, closed for Easter, was unavailable for comment, but has written a letter of apology to Alex.

• This article was amended on Monday 20 April 2009 to remove the phrase "suffered from Asperger's" as the Guardian stylebook discourages the uses of such phrases in stories about disability.


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Tug of War Over Costs to Educate the Autistic

By AMANDA M. FAIRBANKS - The New York Times

The eight children, ages 5 to 11, who attend the Brooklyn Autism Center Academy need intensive individual instruction to cope with a neurological disorder that can make achieving academic progress slow and grueling.

During the course of the day, one teacher is paired with each child. After successfully completing a task, students are rewarded with a spoonful of vanilla pudding, time on a piano or a few minutes in a bouncy castle. The system repeats itself, interspersing work with small breaks.

“Every child with autism can learn,” said Jaime Nicklas, 32, the school’s educational director. “If they are not learning, it is our responsibility to change our teaching procedure, so they can make the progress they are capable of.”

But this type of focused instruction comes with a high price: The academy’s annual tuition is $85,000. The parents of one of the students, Ruby Kassimir, 5, the only girl in the school, took out a home equity line of credit on their home in Queens to help pay the tuition. “There just aren’t that many options available,” explained Ruby’s mother, Sue Laizik, a project coordinator at Columbia University.

As the number of autism diagnoses has risen, the extraordinary cost of educating the children has become a growing point of contention. In 2001, the city’s Department of Education listed 3,278 students with autism; by 2008, that figure had more than doubled to 6,877.

The public school system is required by law to provide an appropriate education for such children, even if it means paying for private school tuition if there is no public school option (although, as Ruby’s parents found, getting the school system to pay is not always easy).

“The crux of the matter is that we need to have a public debate about how much are we willing to invest in making individuals who are disabled, and sometimes profoundly disabled, have a meaningful level of membership in society,” said Gil Eyal, a sociologist at Columbia University who has done research on autism.

Of the more than 6,800 children with autism recorded by the city’s public schools, 4,200 are enrolled in special education classes with a small student-to-teacher to ratio, 285 students are part of a program where children with autism are taught alongside regular education students and 28 are in a charter school with a one-to-one ratio between teachers and students. That school, the New York Center for Autism Charter School, is the only public school in New York City offering intensive one-on-one instruction.

Other autistic students attend private schools from a list of those approved by the state, and their tuition, which ranges from $30,800 to $48,100, is paid by the city’s Education Department. Finally, if parents are dissatisfied with any of the options offered by the public schools, they can choose another private school, one not on the list, at their own expense and seek to have the cost reimbursed by the city.

For all special education students, the department paid $88.9 million for private school tuition last year, compared with $57.6 million in 2007. “Private school tuition claims are a growing burden for us,” said Michael Best, the Education Department’s general counsel.

Ms. Laizik, Ruby’s mother, entered her daughter in the lottery for the New York Center for Autism, and said she broke into tears when she learned that Ruby had not gotten one of the spots on the waiting list. “That’s when it really hit me, how hard it’s going to be,” Ms. Laizik said.

Three separate evaluations of Ruby, between the ages of 2 and 5, emphasized the need for one-to-one instruction.

So when she was not able to enroll Ruby in the public charter school, Ms. Laizik sent her to the private Brooklyn Autism Center Academy and filed a claim with the Education Department seeking tuition reimbursement.

After a hearing, a departmental judge ruled in March that Ruby’s parents were entitled to a 30 percent tuition reimbursement because the city had failed to offer Ruby appropriate placement. They are now appealing to the New York State Education Department’s Office of State Review for the remainder of the tuition.

For the parents of autistic and other special-needs children, springtime is usually when they hear back from the city’s Education Department about their claims for private school tuition reimbursement.

During the 2007-8 school year, there were 4,375 reimbursement hearing requests for special education students, 462 of them for children with autism.

“We are concerned that some parents see this as a way for us to pay for private school,” Mr. Best said. “It’s not supposed to be a vehicle to get private school tuition if there’s something appropriate available in the public schools.”

But parents of autistic children and their advocates argue that any hope for progress requires the kind of concentrated intervention that the public schools cannot always provide.

“The giant elephant in the room, if one in 150 children are being diagnosed with autism, is that they have the same life expectancy,” said Gary S. Mayerson, a lawyer who has represented more than 1,000 families, including Ruby’s, making claims for tuition reimbursement. “Either invest the money now for effective programming or find that your efforts are inadequate.

“At some point you may be staring at the prospect of an even more expensive residential placement — and the state will be footing the bill.”

Despite the onerous financial burden they are confronting, Ruby’s parents are pleased with their decision, having seen that their daughter has made significant progress since she started at the school in September.

Ultimately, the goal is for Ruby to be able to learn in a mainstream classroom.

“The thing that stays with me the most is what kind of life she will be able to have,” said Ruby’s father, Ron Kassimir, 51, an associate provost at the New School.

His wife, Ms. Laizik, added, “When you have a child like Ruby, you realize how much of a role you have to play in that outcome, how involved you have to be to affect that outcome — especially early on, when the stakes are so very high.”


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Saturday, April 18, 2009

Mom shares glimpse into world of autism

News brings life changes

By Jayne Boykin - The Duncan Banner

DUNCAN — Having a child diagnosed with autism is somewhat like a traveler who plans a fabulous vacation in Italy, only to hear the flight attendant say upon landing, “Welcome to Holland.”

Edee Girod, whose son, Rusty, is autistic, treasures a yellowed newspaper clipping she found years ago that expresses what many parents of autistic children feel:

“Holland? What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life, I’ve dreamed of going to Italy.

“But there’s been a change in the flight plan,” the flight attendant explains. “You’ve landed in Holland, and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

“So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met ...

“And, for the rest of your life, you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’

“The pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

“But if you spend your time mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

When Rusty was about 3, Girod realized her son was falling behind other children his age. Although his motor skills seemed normal, and he liked to ride his bike like other children did, there was something not quite right. But she had no idea at the time of the voyage of tears and laughter upon which her family was embarking.

At a child study center in Oklahoma City, Rusty was diagnosed with a handful of conditions, including retardation and autism, and other terms unfamiliar to Girod at the time.

“There was nowhere to turn in those days. People didn’t talk about autism like they do now, and everything we did was breaking new ground. I found maybe three paragraphs on autism in a library book. We didn’t have the Internet back then, either. I thank God every day that we have been able to find the teachers and caregivers and other resources that have helped us with Rusty. Autism is a different world, slower-paced and really unique.

“God has blessed us with the ability to see the uniqueness of Rusty’s world and to live in it with him. Rusty has a lot to offer, but you have to get on his level. You cannot expect him to come out and meet you on your level,” his mother said. “Like the traveler who planned to go to Italy and wound up in Holland, no one plans to have an autistic child, but if we had spent time mourning the fact that he is different, we would have missed out on knowing the wonderful person that he truly is.”

Rusty attended school in Lawton his first year, then transferred to Duncan, where he completed 12 years of public schooling with teachers who provided the structured environment his condition requires. He enjoyed playing basketball and participated in Special Olympics for a number of years.

The middle child of Edee and Mike Girod’s three children, Rusty likes to be with his close-knit family — sister, Mika Savage, brother, Daimon Girod, and his six nieces and nephews, all of whom live nearby.

“He loves babies, and when we’re out in public and he hears a baby cry, he gets very concerned about it,” his mother said.

Rusty enjoys listening to music, and has a collection of favorite songs he listens to over and over again. He can sing most of his favorites from beginning to end, humming a bit when the words escape him, then picking up the lyrics again further along in the tune. He exhibits many of the traits of a savant, as portrayed in the film, “The Rain Man,” and can tell a visitor who hands him an unmarked cassette tape not only what the tape is, but what song is queued up to play next. If the tape is then placed in the cassette player, the designated song does, indeed, emanate from the player, just as Rusty predicted.

Autism is an ever-changing state. In his younger days, Rusty exhibited some compulsive behaviors that have now subsided, only to be replaced by others. Now 38, his needs are different from what they were when he was a child, but with autism, the needs of the person affected can change almost with the speed of light, and families and caregivers must be constantly in tune with those changes.

Rusty has a collection of well-loved stuffed animals and keepsakes, and decorates his world according to what seems right to him. He gets agitated when objects are moved or changed, even to dust them, Edee Girod said.

“He has a need for sameness. What he wants. He appears to live in isolation, but he loves to get out in the world, too. He loves to ride escalators and Ferris wheels, though with the back problems he has developed, he can’t do some of the things he likes to do any more,” she said.

Asked his favorite thing to do, Rusty said, “Ride Daddy’s boat!” with a big smile.

He also listed his favorite restaurants and what he liked to eat there. He can communicate his thoughts and wishes, but on his own terms. He can spell some words, including his name, but doesn’t like it when others spell words in front of him. Unlike many people with autism, who do not like being touched and who will not make eye contact with others, Rusty looks a visitor in the eye and extends his hand to shake.

“He speaks ‘Rusty.’ People who are around him for very long learn to speak fluent ‘Rusty.’ Even his brother’s friends who visit with him know how to speak on his level and he can communicate very well at times,” Girod said.

Other days are more difficult, and Rusty retreats into an inner world that no one else can fully experience. He laughs, he cries, he rocks to and fro in his chair and makes an assortment of noises and sound effects that have meaning only to him in that moment. It is those times that can try the patience of his family and his caregiver, Annette Bounds, who was featured in Part 2 of this series.

“God has blessed us with Annette. She is very graceful and forgiving of the things Rusty does sometimes. It truly has been our deep faith that has gotten us through the bad times and allowed us to see the uniqueness of Rusty’s world. It takes a lot of faith to keep going. If we didn’t have God in our lives, I don’t know what we would do,” Girod said.

She encourages any parent who suspects a child has a problem to speak to his or her family doctor as soon as possible. The doctor can then make referrals for further testing and treatment. If the child is then diagnosed with autism or a similar disability, she implores parents to reach out to others for the support and encouragement they will need.

“Autism is a lifelong thing, and the earlier the diagnosis, the better. Early intervention can help keep the whole person whole — not allow him to slip through the cracks — and can help the family through the difficult times. I would encourage any parent who would like to talk about autism to call me. We’ve been in insurance and real estate in Duncan for many years. People can find us easily, and I would be more than happy to share experiences with them,” Girod said.


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Friday, April 17, 2009

Ten Things Every Child with Autism Wishes You Knew

by Ellen Notbohm

from the book Ten Things Every Child with Autism Wishes You Knew (2005, Future Horizons, Inc.) Reprinted with permission of author

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute -- the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult.

Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.

Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child. My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

3. Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).

Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.”

Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.

I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7. Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

8. Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.

Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.

Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10. Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They may have had autism too.

The answer to Alzheimer’s, the enigma of extraterrestrial life -- what future achievements from today’s children with autism, children like me, lie ahead?

All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.


© 2005 Ellen Notbohm

Please contact the author for permission to reproduce in any way, including re-posting on the Internet.

Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, Ten Things Your Student with Autism Wishes You Knew, and The Autism Trail Guide: Postcards from the Road Less Traveled, all ForeWord Book of the Year finalists. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s Digest and Children’s Voice, and a contributor to numerous publications and websites around the world. To contact Ellen or explore her work, please visit

Melatonin may help autistic children sleep

By United Press International

SACRAMENTO, April 16 (UPI) -- U.S. researchers suggest melatonin may help children with autism or Fragile X syndrome sleep.

The study, published in the Journal of Clinical Sleep Medicine, linked melatonin treatment to lengthening mean sleep duration by a mean of 21 minutes, decreasing sleep-onset latency -- the length of time it takes to fall asleep -- by 28 minutes and shortening sleep onset by 42 minutes.

Study senior author Beth Goodlin-Jones of the M.I.N.D Institute at the University of California Davis Health System in Sacramento suggests treatment with over-the-counter melatonin supplements might help alleviate some of the stress that parents of special-needs children experience.

Sleep problems, she says, are reported in up to 89 percent of children with autism and 77 percent of children with Fragile X syndrome -- the most common form of inherited mental impairment ranging from learning problems to mental retardation.

"Sleep onset problems at the beginning of the night are very troublesome for children and their families," Goodlin-Jones says in a statement. "Sometimes children may take one to two hours to fall asleep and often they disrupt the household during this time."

The study included information from 12 children who met diagnostic criteria for autism or Fragile X syndrome or both between the ages of 2- 15. Sleep quality and quantity were measured both objectively and subjectively. Participants were given two weeks' supply of either melatonin or a placebo.


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A showing that suits kids with autism in Chicago

By Julie Deardorff | Chicago Tribune reporter

Movie theaters can be frightening—even painful—places for children with autism and sensory disorders. They're loud, dark and often crowded; a bad combination when you perceive everything as bigger, brighter and louder.

But Saturday's showing of "Hannah Montana The Movie" at several Chicago area theaters will be different. The lights will slightly be turned up, the sound lowered and the "silence is golden" policy will be cast aside, thanks to a partnership between theater companies and autism-related organizations.

"The transition [when a movie starts] is scary enough to send your kid running out of the show and straight into the street," said Dena Seidenfuss of the Elmhurst-based Special Education Resources Group, which has partnered with Classic Cinemas for a showing at the York Theater.

During these "sensory-friendly" films, standing, shouting, singing, walking and moving is encouraged. Most autistic kids have an extreme need for movement, which makes it hard for them to sit for the full length of a movie. "Many also have impulse-control issues and problems knowing what's socially appropriate, so they might shout out in excitement or express themselves in unusual ways," said Christi O'Neal of Georgia, whose 7-year-old son Eric has autism and a sensory integration disorder.

But movies can be enjoyable if the setting is right. "Unlike birthday parties, movies don't have as much demand for social interaction and not quite as much unpredictability," said O'Neal. "Having seen the current 'hot' film can be really helpful to them in a social setting so they have something in common to talk about with the neurotypical kids."

In addition to the Classic Cinemas showing, AMC Entertainment also hosting "Sensory Friendly Films" at three Chicago-area theaters. AMC has also partnered with the Autism Society of America to help create jobs for those on the autism spectrum.

All shows are on Saturday.

•York Theater, 150 N. York St., Elmhurst, 9:30 a.m.

•AMC Northbrook Court 14, 1525 Lake Cook Rd., Northbrook, 10 a.m.

•AMC South Barrington, 175 Studio Drive, South Barrington, 10 a.m.

•AMC Cantera, 28250 Diehl Rd., Warrenville, 10 a.m.


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Thursday, April 16, 2009

Asperger's victim viciously assaulted

By Rochdale Online

A man with Asperger Syndrome was left with a fractured arm after a vicious and unprovoked assault in Rochdale.

The attack happened outside the Wellfield Surgery at the junction of Woodbine Street and Oldham Road, where the victim was knocked to ground by a punch to the face and then kicked repeatedly in the head while he lay helpless on the ground.

The 44-year-old victim had just been to the Costcutters convenience store at about 7pm on Wednesday 25 March when the offender ran up behind him and launched the unprovoked assault.

A brave civilian chased the offender down Oldham Road onto Crawford Street but they could not catch him.

The offender is described as Asian, between 18 and 25 years old, about 5ft 6in to 5ft 8in tall and of average build. He was wearing a black hooded jacket, baggy dark blue jeans with a white logo on one pocket and trainers.

The victim suffered a large cut over his left eye and dislocated shoulder and fractured his arm in three places.

Police in Rochdale are now appealing to anyone who has information to come forward. Detectives are keen to speak to a woman who may have been waiting at the bus stop on Oldham Road at the time of the attack or a man using a telephone kiosk outside the Lloyds Pharmacy to come forward.

Detective Constable Amie Darnell, based at Rochdale CID, said: "This was an appalling, violent and totally unprovoked assault on a man who was minding his own business. The sheer level of violence this man resorted to was absolutely disgraceful and it would appear he made no effort to steal anything - it was just an act of mindless violence.

"I would urge anyone who has information to come forward and speak to us so we can find this man and give the victim, who suffered nasty injuries, some peace of mind after his horrific ordeal."

Anyone with information should call Rochdale CID on 0161 856 8443 or the independent charity Crimestoppers, anonymously, on 0800 555 111.


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Wednesday, April 15, 2009

Have bike - and Asperger's - will travel to show bullies he's no idiot

By Brisbane Times

A 15-year-old Brisbane boy with Asperger's syndrome who disappeared for two weeks and rode his bike more than 950 kilometres to Sydney did it to prove to "bullies'' he wasn't an idiot, his mother says.

During his six-day, dawn-to-dusk haul down the east coast, Ethan Johnson slept at truck stops, under bridges and ate at fast-food restaurants.

All the while, online, thousands of people joined a support group hoping for his safe return, and assuring him he was a great person who needn't prove anything to anyone.

Ethan's mother, Tammy Johnson, was unaware of his exact location during the two weeks, and kept putting a small amount of money into his keycard account each day so he could eat.

Despite this, when Ms Johnson was finally re-united with her son after police found him at Merrylands train station on Good Friday, she found he'd shed substantial weight.

"He is safe, has lost about 20kg and is skin and bone. I'll have to feed him up again,'' Ms Johnson said, on an internet appeal site she set up after Ethan went missing.

Ethan disappeared on the morning of March 30, and was last seen on CCTV footage at Robina train station on the Gold Coast about 9.20am.

Fears for his safety were raised after he failed to turn up to classes at Runcorn State High School, and did not contact any family or friends.

As it turned out, he was pedalling to prove a point.

"He rode his bicycle to Sydney for no better reason than to see if he could,'' Ms Johnson wrote the internet site.

"He wanted to prove to some bullies [and everyone else] that he's not an idiot.

"And he isn't - he actually planned the whole trip himself - which is so very far outside his comfort zone.''

Another motivation for Ethan was that he hadn't seen enough of the city during a school excursion when he was 12, Ms Johnson said.

"Because we had the CCTV footage, we knew he was safe and the fact that he kept using his keycard as he went along we knew where to find him when he hit Sydney,'' she said.

"We kept putting a little bit in his account each day so he could buy food but not too much so he couldn't get too far.

"We got him on the morning he took the last bit of money from his account.''

Ms Johnson said she gave Ethan a big cuddle and he started crying when she was re-united with him.

He had planned to ride even further when he was tracked down by police.

"He got a bit disappointed because he was found a bit quicker than he thought he would be. He didn't get too explore too far,'' Ms Johnson said.

"He had ventured into the heart of the city but there were too many people so he left the city area - he doesn't like crowded areas.''

However he has told his mother it was good to be back home and he would not do it again.

Although Ethan is now back with family, Ms Johnson has decided not to remove the internet appeal site - on Facebook - to show him how many people cared for him.

More than 9000 people signed up to the site, and most posted warm, motivational messages aimed at instilling Ethan with self-confidence.

"Ethan, we love and appreciate you, mate. Can't wait to see you back at school,'' wrote one person, Chris Godde.

Another, Kate Metzdorf, wrote: "Being bullied can make you feel pretty sad and lonely, but if you didn't know before and least you now know that you have lots of family and friends who think you are pretty cool, so don't ever let anyone let you think that they are better than you, because they are not.''

Asperger's syndrome is a autism-related disorder that inhibits a person's ability to interact socially.


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News reader shares autism battle

By BBC News

Channel 4 news reader Alex Thomson has had a three-year struggle to get educational care for his autistic son.

A health trust was forced to apologise to him for changing the boy's diagnosis after bowing to pressure from the education authority.

He told BBC 5 live's Victoria Derbyshire show he thought parents across the UK had experienced the same problems.

In 2006 a paediatrician at the Princess Alexandra Hospital NHS Trust in Essex diagnosed Alex Thomson and his partner Sarah Spiller's son Henry, then aged six, with Autistic Spectrum Disorder (ASD).

Henry had already been issued a statement of special needs - a legal document guaranteeing him extra support at school.

The family then asked their local authority (LEA) to re-assess Henry to find out what additional help at school he might need.

The LEA refused, and Mr Thomson says that they were told that the paediatrician had withdrawn her initial diagnosis of autism.

Mr Thomson said: "Lo and behold, it appeared that our child had been cured of autism, and that's when we began to think something very strange was going on."

Henry's diagnosis of autism was subsequently backed up by other medical specialists his parents consulted, and Mr Thomson and Ms Spiller complained to the General Medical Council.

During an official inquiry by the Princess Alexandra Hospital NHS Trust, the family say they received a letter from the hospital's chief executive saying the paediatrician admitted she had felt compelled to downgrade the diagnosis of autism after pressure from local educational officials.


"They (local education officials) were going behind our backs to change a diagnosis," said Mr Thomson.

"Now that struck us as something incredibly serious, and the reason we're going public is we suspect this is happening the length and the breadth of the country."

He went on to say that it was important to "make a noise... if only so that people out there can think, yeah, I'm not alone in this".

The hospital trust said it had apologised to the family .

In a statement, the trust said: "We can confirm that we have reviewed our procedures in the light of national guidelines and the need to continue to develop the best possible local practices."

The Healthcare Commission, which also investigated the matter, said it did not accept there was collusion when it came to professionals withdrawing Henry's diagnosis.

Mr Thomson said: "If you've got a doctor who is under pressure, behind your back, from education officials who are not medical people, putting pressure on a doctor to change a diagnosis, I say that's collusion."

And his partner Sarah Spiller added: "The Healthcare Commission said ... that there was uncertainty in the multi-agency team about how and why a diagnosis of autism is made, and I think that uncertainty is also a cause for alarm."

'Learning commitment'

Mr Thomson said the system had made him angry, and that the "clear conflict of interest" he believed existed had got education officials and paediatricians into "a mess".

He called for an independent body to be set up, as he felt his case had proved the system was open to abuse.

Essex County Council said it had requested a copy of the report from the Princess Alexandra Hospital Trust, but was yet to receive the document. The council maintained that it could not comment on the findings until then.

It said: "The council is committed to providing the very best learning opportunities for every child in Essex.

"Any decisions regarding a child's education, therefore, are made not on the basis of cost, but on the needs of the child."


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A Gallop Toward Hope: One Family’s Adventure in Fighting Autism

By MOTOKO RICH - The New York Times

When Rupert Isaacson decided to take his autistic son, Rowan, on a trip to Mongolia to ride horses and seek the help of shamans two years ago, he had a gut instinct that the adventure would have a healing effect on the boy. Mr. Isaacson’s instinct was rewarded after the trip, when some of Rowan’s worst behavioralissues, including wild temper tantrums, all but disappeared.

Now the publisher of Mr. Isaacson’s book about the journey, “The Horse Boy,” has a similar instinct about the market potential of his story, and is hoping for its own happy ending.

Little, Brown & Company, which released “The Horse Boy” on Tuesday, has a lot riding on its success: the publisher paid more than $1 million in an advance to Mr. Isaacson before he and his family had even taken their Mongolian trip.

Michael Pietsch, publisher of Little, Brown, said booksellers had already placed orders high enough to justify a first printing of 150,000 copies.

“It just touched so many points of interest — helping to heal an autistic child, traveling under difficult circumstances,” Mr. Pietsch said. “Most of all, I felt this was a story entirely driven by the chances you’ll take for love, and I felt, who’s not going to want to read this story when they hear the outlines of it?”

“The Horse Boy” traces Rowan’s early difficulties with “demonic” tantrums, speech delays and incontinence. The only thing that seemed to help, Mr. Isaacson discovered, was riding horses. On horseback Rowan was calm, gave verbal directives and expressed joy.

Then Mr. Isaacson, who had previously written about the Bushmen of the Kalahari Desert in southern Africa and witnessed several shamanic ceremonies, took his son to a convention of traditional healers. For a few days Rowan improved.

Mr. Isaacson, a travel writer, wondered where he could combine horses and shamanic healing, and landed upon Mongolia. After some intensive Google searching and heated discussion with his wife, Kristin Neff, an associate professor of human development and culture at the University of Texas, the family decided to make the journey. A young filmmaker agreed to record the trip.

Mr. Isaacson also decided to pitch a book about the journey. His 37-page proposal outlined an itinerary and his hopes for Rowan’s healing.

Mr. Pietsch said that it was rare for the publisher to take on what he described as “prospective adventures.”

“Our usual response is, ‘Go have the adventure, and then we’ll decide,’ ” Mr. Pietsch said. In this case he determined “that regardless of the outcome in Mongolia, we thought he would write a very moving and interesting and dramatic book.”

During the auction of the book two years ago, Elizabeth Sheinkman, Mr. Isaacson’s agent in London, stoked interest by linking to a YouTube video of Mr. Isaacson and Rowan on horseback. Ms. Sheinkman went on to sell the book in Britain and 16 other countries.

In a telephone interview from his home near Austin, Tex., Mr. Isaacson said he wrote the kind of book he wanted to read when Rowan’s condition was first diagnosed, showing that even families with autistic children could lead a life of adventure. “I knew if somebody had put out a story like this when I was first facing the diagnosis,” Mr. Isaacson said, “I would have been to a large degree reassured.”

“The Horse Boy” follows the family’s four-week trek through Mongolia, riding on horseback or in a van with leopard-skin seats, meeting with shamans along the way. Mr. Isaacson candidly expressed misgivings about the difficult journey, recounting setbacks when Rowan, who was 5 at the time, exploded in tantrums or refused to get on a horse.

Much of the trip was captured on film by Michel Orion Scott, whose documentary about the experience, “Over the Hills and Far Away,” will be released in September. Mr. Isaacson paid for most of the production costs.

Mr. Isaacson has optioned feature film rights for “The Horse Boy” to Mark Ordesky, an executive producer of the “Lord of the Rings” trilogy, and Ileen Maisel, an executive producer of the “Golden Compass.” Mr. Isaacson is writing the screenplay.

In writing about Rowan’s experiences, Mr. Isaacson is careful to avoid the word “cure,” but writes of an amazing “recovery” and “healing.” That has some prospective readers wary. Sharon Fennell, a mother of three in Belfast, Northern Ireland, whose 8-year-old son is autistic, said she had read newspaper excerpts and reviews in Britain, where the book came out last month.

She questioned whether Rowan’s progress could be attributed to what happened in Mongolia or to just typical changes that all children go through. “To make this story more engaging, it has to be portrayed as something miraculous and fantastical, because ordinary, everyday, slow-plodding progress does not read so well,” Ms. Fennell said.

Doctors who have worked with autistic patients say a child can make big leaps in development, and that stories like Mr. Isaacson’s can provide inspiration to families.

“I think we’ve all seen these alternative or augmentative therapies that have done wonders for given children,” said Dr. Sarah Spence, a pediatric neurologist specializing in autism at the National Institute of Mental Health.

But others warn that such examples are not tested by science. Dr. Paul A. Offit, chief of infectious diseases at Children’s Hospital of Philadelphia and author of “Autism’s False Prophets,” said anecdotal examples of recovery like that in “The Horse Boy” could give parents “false hope” and lead them to spend thousands of dollars trying to replicate an experience without any scientific proof that it would help.

Mr. Isaacson said that he and his wife had used part of his book advance to start a ranch where other autistic children could ride horses. But he added that the approach he chronicled in “The Horse Boy” was tailored to Rowan’s personality.

“The book isn’t really saying that shamanism cures autism or horses cure autism; it’s saying we found a way,” said Mr. Isaacson, who took Rowan, now 7, to Namibia last year to meet again with shamans. “You don’t have to get on a plane and go to Mongolia. It’s just that our particular story was that.”

Mr. Pietsch of Little, Brown said he hoped “The Horse Boy” would find a broader audience. In a brochure sent to booksellers, the book is described as combining “the adventure and optimism of ‘Three Cups of Tea’ with the powerful connection between man and animal that readers loved in ‘Marley and Me.’ ”

Booksellers have responded strongly to the marketing campaign, which included DVDs, YouTube trailers and lunches with Mr. Isaacson. “We feel that it’s really got the best-seller potential,” said Bob Wietrak, a vice president for merchandising at Barnes & Noble.

Janet Bailey, the buyer for Barbara’s Bookstores, an independent chain mostly in the Chicago area, said she had committed to the title “very aggressively” even though she had not read it. She was particularly taken with the book’s cover, which shows Rowan and Mr. Isaacson in a triumphant moment on the back of a horse on the Mongolian steppe. “It’s inspiring and uplifting and it’s about horses,” she added.

To promote the book, the Autism Society of America, an advocacy group, will send representatives to Mr. Isaacson’s readings in several cities.

Mr. Isaacson is already working on a new proposal for a book tentatively titled “The Gifts of Autism.” Mr. Isaacson said that Rowan himself had started to write. “The next film and the next book will probably have a lot of input from Rowan in it,” Mr. Isaacson said.


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Tuesday, April 14, 2009

4-year-old boy with autism left on bus; driver charged

By Sarah Schulte - ABC7 News

A suburban school bus driver has been charged after she allegedly left a 4-year-old boy with autism on a bus for an hour while she went shopping.

The driver is now charged with endangering the life of a child.

Marc Martin and Lisa Zago-Martin are driving their son to and from school rather than allow the 4-year-old autistic child to go on a school after he was left on a school bus for more than an hour last week.

Minutes after he was supposed to be at Thomas Jefferson School, 8200 W. Greendale Ave. in Niles. Lisa got a phone call that he was missing.

"The nightmare phone call we all dread. I was horrified, shaking," said Lisa.

"My secretary said it was the first time in 15 years she'd ever heard me scream," said Marc.

Almost an hour later, Marc was found safe inside the unattended bus in Glenview. Police say the 60-year-old driver was shopping inside this party store. She has been charged with child endangerment.

Each bus is equipped with an alarm that can only be deactivated by walking to the back and turning it off. They said the alarm was working but what wasn't working was the two-way radio and the driver wasn't answering her cell phone.

"To us it's unconscionable that a school bus could have no working radio system," said Marc.

The bus only had eight seats and the family has a hard time believing the driver didn't know Marc was on the bus.

"Marc's very verbal. I know she knew he was on that bus," said Lisa.

Knight was immediately fired from the bus company for violating procedures. The company said Knight had worked for them for the past five years and was an excellent driver until last week.

The Martins are going to be pushing for stronger state laws that make it mandatory for buses to be equipped with two-way working radios, and video system.


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Savant skills may be widespread in people with autism

Daniel Paul Tammet is a British high-functioning autistic savant gifted with a facility for mathematical and natural language learning.

By Celeste Biever - New Scientist

Savant-like skills, such as astounding memory, perfect pitch or the ability to multiply very high numbers together, may be much more common among people with autism than previously thought.

A new study of about 100 adults with autism shows that one third have skills that stand out, both in comparison with their other abilities and with the skills of the general population. Previous studies put the prevalence of savantism in autistic people as around 1 in 10.

"People often focus on the things people with autism can't do," says Patricia Howlin of the Institute of Psychiatry at King's College in London, who led the study. "One of the things our study illustrates is that these are people who do have special skills but they are not being used."

The notion of the savant – someone who has a skill that is exceptional both compared to the general population and to that person's other skills – has long captured the imagination of cognitive scientists and the general public alike. But despite this fascination, the connection between autism and savantism remains mysterious.

Some studies indicate that there are more savants within the autistic population than among the general population and among the populations of people with other mental difficulties. Putting an exact figure on the prevalence of such special skills among people with autism, however, has proved difficult.

Outstanding skills

In an attempt to quantify this, Howlin's team looked at two different measures of exceptional ability in a group of people with autism – all now adults – who the team have been studying periodically since they were first diagnosed between 1950 and 1985. They found that 39 met criteria for either what they call a "savant skill" or an "exceptional cognitive skill".

To identify savant skills, the researchers sent the parents of the autistic adults a questionnaire asking them to identify and describe, using specific examples, any outstanding skills and talents that were present "at a level that would be unusual even for normal people".

Of almost 100 parents who replied, about half (45) claimed that their child had a special skill. But only 24 of the hundred met the researchers' tough criteria for what constitutes a savant skill: both exceptional in terms of population norms and above the individual's overall level of ability.

Relying on parents' anecdotal reports of skills could be risky. However, Francesca Happe, also at the Institute of Psychiatry but not involved in the study, says that the team's criteria were "pretty strict": "They didn't count anything that could conceivably be considered a normal skill. I don't think the parental reports are inflated."

Searching for savants

Among those skills considered at the savant level were: being able to name the elevation of both the sun and the moon at any time of day, on any specified date; being able to name the day of the week for any date in the distant past or future (a fairly common savant ability known as calendrical calculation); perfect pitch; and the ability to say, from a single chord, which piece of music it came from.

To identify exceptional cognitive ability, Howlin's team also examined the volunteers' scores on standard intelligence tests consisting of a range of subtests aimed at different aspects of IQ, such as arithmetic, spatial and motor skills and memory span. They found that 23 had an ability on at least one of these subtests that was well above the general population's average score on that subtest.

Eight of these 23 had also been identified as a mathematical or calendrical savant according to the first criteria, and the team concludes that overall 28.5% – or almost one third – of their volunteers had either a savant skill or an exceptional cognitive ability.

"I think it is a surprisingly high number, but believable," says Happe. She says that the study opens a window into the mind of a child with autism and recommends using these isolated, exceptional abilities as a way to motivate people with autism to learn other skills – such as social or communication ones – that might not come as easily.

One in ten?

Darold Treffert, a psychiatrist based in Fond du Lac, Wisconsin who studies savants, says that he sticks by an earlier estimate of the prevalence of savantism as being one in ten among people with autism. This is based on previous studies and backed up by his own observations.

He says this is partly because he is mistrustful of parental reports, and partly because he does not think that the peak ability in the intelligence subtests qualifies someone as a savant. "Some autistic savants do well on IQ subtests, but not all autistic persons who do well on IQ subtests are savant."

But he says the study is interesting, because it underscores the failings of IQ tests to measure overall intelligence.

"We are all made up of a series of intelligences, especially the savant, and IQ measures one component," he says. "Savants starkly challenge our definition of 'intelligence' and require us to look for ways to measure other 'intelligences'."

"We need a more reliable definition of savant syndrome, and a more reliable definition of intelligence," he adds.


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Monday, April 13, 2009

Teaching Teenagers With Autism How to Make Friends

Picture by Seattle Times

By Nancy Shute - U.S.News & World Report LP

Teenage social life can be frustrating in the best of circumstances, and it's even harder for teenagers with autism, who report feeling lonelier and having poorer-quality friendships than their typically developing classmates. But social skills can be learned, according to researchers at the University of California-Los Angeles. They have created a new class that lets autistic teenagers practice key social skills, from asking someone to get together to brushing off teasing with a "That's so lame."

Social skills classes are common for young children with autism, because problems with social interactions and communications are a hallmark of the disorder. However, there is little help for teenagers and young adults, despite the fact that teenage life is all about communicating with peers. "Because autism research is in its infancy, we're just starting to set these things up," says Elizabeth Laugeson, a clinical instructor of psychiatry at UCLA who also is associate director of the UCLA Parenting and Children's Friendship Program. She and her colleagues created a series of twelve 90-minute classes, taught weekly, in which high-functioning teenagers with autism spectrum disorders work on practical social skills. They include how to pick the peer group that's right for them (jocks, nerds, gamers); how to join and leave a conversation; how to host a get-together; how to handle bullying and teasing; and how to change a bad reputation.

Parents of the teenagers take separate classes in which they learn how to support their child's social efforts and help with "homework." At the end of 12 weeks, 33 teenagers ages 13 to 17 who participated in a study group were having more peer interactions outside of school and had increased the number of get-togethers they hosted. Their parents reported a significant increase in the children's social skills, and both parents and children reported better friendships, compared with a control group of teens who did not attend the classes.

"We could literally see a dramatic improvement in these kids' behavior," says Laugeson. "A lot of our kids came into the program with virtually no social contact outside of school. We saw a dramatic increase in the amount of get-togethers with friends. They weren't so socially isolated anymore." That research is published in the April Journal of Autism and Developmental Disorders. A second study, which is tracking whether teenagers maintained the improved social skills three months after classes ended, has just been completed. It found that the kids continued to have more get-togethers, including invitations to others' homes.

The Program for the Education and Enrichment of Relational Skills, or PEERS, isn't yet available outside UCLA, although Laugeson's group has adapted it for schools, where it will be tested starting this fall. A training manual for mental health professionals is also in the works, and Laugeson hopes there will be a do-it-yourself book for parents in the near future.

Although social skills classes for autistic teens might be hard to find, my colleague Meghan Johnson recently wrote about summer camps that teach social skills for teenagers with ADHD and other special needs. Advocacy groups are pushing hard for more real-world skills training for teenagers with autism. And here's the story of Joe Steffy, a 23-year-old with autism and Down syndrome who runs a popcorn business with the help of his family and employees.


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Eliminate Gluten: Why Go Gluten Free?

By Cheryl Heppard - Detroit Holistic Health Examiner

My eleven year old daughter has slight allergies and consequently, often gets congested. As a health counselor, I have had many clients who have dramatically improved their health and conditions by modifying their diet to exclude dairy and gluten. Most of us have some type of inflammatory response to both. We determined early on that my oldest daughter is very sensitive to dairy. Recently, we convinced her to try a gluten free diet as well. I already cook a primarily gluten free menu, using brown rice pasta rather than pasta made with refined white flours, and using brown rice, quinoa, lentils and beans liberally as side dishes.

Here is a little more information on how to transition to a gluten free diet.

Who Should Avoid Gluten?

Gluten allergies have become very common and the number of people who are allergic are expected to keep rising. Those who are severely allergic to gluten are known as "celiacs". Some people get severe skin rashes from gluten allergies. Everybody seems to have some kind of an inflammatory response to gluten, and the gluten free diet has become very popular as many health conditions improve once gluten is cut out of the diet, such as arthritis, autism, ADHD, allergies, etc.

What Is Gluten?

Gluten is the protein part of wheat, spelt, rye, barley, most oats, and other related grains. Gluten intolerance is the inability to digest or break down gluten. This condition can range from a mild sensitivity to full blown celiac disease. The skin disorder called dermatitis herpetiformis, which causes a chronic itchy rash of bumps and blisters, is also linked to gluten allergies. The gluten-free diet must be strictly followed by sufferers of celiac disease and dermatitis herpetiformis.

Around ½% of the world's population is Celiac. This means ~1 in 200 people. Some people are not celiac, but have intolerance to gluten. Some studies show gluten intolerance to be around 30 times more prevalent than celiac disease. Up to 15% of people or 1 in 7 are gluten sensitive and suffer the same symptoms. These are people who test negative or inconclusive for celiac disease. They are known as Non-Celiac Gluten Sensitive (NCGS). Symptoms include gastro-intestinal issues, headaches, mouth ulcers, weight gain or weight loss, poor immunity to disease, and skin problems like dermatitis and eczema.

According to some celiac specialist researchers, everyone has some reaction to gluten, but non-celiacs recover more quickly. Many people report feeling better on a gluten free diet. Many studies have found that a gluten free diet significantly decreases allergy symptoms among children. Some medical practitioners believe that gluten-free diets benefit other conditions as well, such as irritable bowel syndrome, ADD/ADHD, autism, multiple sclerosis, cystic fibrosis, thyroid disease and other autoimmune disorders.

Sticking to a gluten-free diet is not easy. Grains are used in many foods, especially processed foods, which everyone should avoid despite gluten intolerances. It is often difficult to determine by an ingredient’s name what may be in it, so it is easy to eat gluten despite the best of intentions. Gluten is used in unexpected ways, so be wary of the following: stabilizing agents or thickeners in foods, over-the-counter or prescription medications, vitamins, cosmetics such as lipstick, and also many lip balms, and even communtion wafers may contain gluten.

Michigan Resources

When I work with clients who have recently become diagnosed as being celiac, have candida, or must avoid gluten for allergies, I recommend visiting the gluten free store in Chesterfield Township, called Celiac Specialties. There also is a new restaurant in Sterling Heights which is completely gluten safe, called GF Cucina.

Whole Foods and Trader Joe's also carry a good selection of gluten free products.


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Sunday, April 12, 2009

Autism screening tops Obama's medical to-do list

By Nancy Shute U.S. News & World Report

Autism is the only disorder or disease mentioned explicitly in Obama's 24-point agenda on . Heart disease and cancer don't get the call. Neither does diabetes, or other chronic diseases.

But there are four hefty bullet points addressing autism. Obama called for:

1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.

2. "Life-long services" for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments.

3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.

4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren't diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.

That second bullet point would be a huge help for families who are struggling to provide care. In a recent survey, 52 percent of parents of children with autism said their family finances were drained by treatment and care, compared to 13 percent of typical families.

The 2006 Combating Autism act promised almost $1 billion over five years for autism research and development, but Congress hadn't appropriated $200 million per year, even before the economy hit the skids. The Obama manifesto gives a big fat hint that for autism, at least, the hard times cited in the new president's inaugural address won't mean big cuts in funding.

Still, universal screening for autism will be a huge challenge. There's no blood test that can be used to diagnose autism, as there is for hereditary diseases like galactosemia and sickle cell, which are screened for using a heel stick while a newborn is still in the hospital. With autism, parents and doctors instead need to observe a child and look for delays in language, social interactions, and gross motor skills.

The Centers for Disease Control and Prevention recommends that pediatricians screen children during well-baby visits at 9 months, 18 months, and 24 or 30 months. But many doctors don't get around to doing those screens, and until very recently the recommended tests weren't sensitive enough to pick up mild autism spectrum disorders. Early screening for autism is a terrific idea. Making it happen will be a tall order, even for the can-do Obama team.


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Saturday, April 11, 2009

Challenges of autism also yield big rewards

By The Buffalo News

I will always remember that day. It was late August and summer weather was still trying to hang on. It was sunny and mild but very windy. I blamed the wind for the chill I was feeling; but in hindsight, it probably was not the wind that was making me shiver.

My husband and I drove in complete silence the entire 30 minutes it took to get from our home to the University at Buffalo Center for Children and Families. Both of us were lost in our own thoughts about what lay ahead.

We were going to hear from the experts what we already knew in our hearts to be true. They were the four words we most dreaded: “Your son has autism.” They were spoken to us seven years ago.

Our lives were forever changed that day. At first I spent a lot of time trying to make deals with

God, like “please take this autism from my child and I’ll do anything you ask.”

But change, in and of itself, does not have to be a bad thing. It is how we embrace it, how we move forward from it, that makes our lives better or worse because of it.

The challenges we face raising a child with autism are great. However, if we spend too much time thinking about those challenges, they can become overwhelming. And if we don’t embrace the challenges, we will miss out on all the rewards.

The rewards are some of the most amazing experiences I have had in my life. Whether it is when Ryan is doing his homework and smiles at me because he knows he got the answer correct, or the first time I took him to the playground and he played appropriately on the swings and slides. No longer did he just sit on the ground throwing the wood chips about.

For me, the biggest reward has been watching his relationship with his siblings blossom. It is very difficult for an autistic child to develop social skills. Ryan is fortunate to have a brother and two sisters who each, in their own unique way, have helped him grow into the silly, lovable young boy he is today. They have taught him important skills he never could have learned in a classroom. I know they, in turn, have learned much about the importance of patience, tolerance and acceptance.

Because of Ryan, I am a firm believer that God gives us our children for a reason. It is not just because of what we, as parents, can teach our children; it is also what we, as adults, can learn from them. Ryan has pushed me in so many ways to be a better person.

There is a saying, “God only gives us as much as we can handle.” It reminds me how strong Ryan’s soul must be to have taken on the challenges this life has handed him. His obstacles are far greater than any I have ever faced. It is because of Ryan I find strength and courage to rise above my own personal fears.

What started as a day that felt as though our whole world was crashing down around us has turned into a journey that has blessed us with many rewards.

This is for all the families out there who have recently, or will very soon, receive the same devastating news my family received seven years ago. Always keep your heart and mind open to what your child may be trying to teach you, and cherish the rewards you will find in your child’s successes. This is also for Ryan, who is our hero every single day.


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