Tuesday, December 1, 2009

Early intervention aids children with autism: study

A new therapeutical treatment for autism that can be used to treat children as young as 18 months improves their IQ, language ability and social interaction, according to a study published Monday.

"This is the first controlled study of an intensive early intervention that is appropriate for children with autism who are less than two-and-a-half years of age," said Geraldine Dawson, lead author of the study.

"It is crucial that we can offer parents effective therapies for children in this age range," added Dawson, currently chief science officer of Autism Speaks.

"By starting as soon as the toddler is diagnosed, we hope to maximize the positive impact of the intervention."

The research used an approach known as the "Early Start Denver Model," (ESDM) which combines use of applied behavioral analysis and development "relationship-based" techniques, according to the study published in the journal Pediatrics.

The approach is the first to be used on children younger than pre-school age and yielded impressive results in treating autism, a neurodevelopmental disorder believed to affect one in 100 children in the United States.

The study was carried out over five years, and involved 48 children between the ages of 18 and 30 months who suffered from autism but had no other health issues.

The group was divided into two sections, the first of which underwent therapy using the Denver Model, while the second was referred to community-based therapy programs.

University of Washington at Seattle specialists treated the first group for 20 hours a week, in two sessions of two hours each, five days a week.

The children in the first group also received five hours of parent-delivered therapy a week.

At the end of the study, the children in the first group had improved their IQ scores by approximately 18 points, compared to an improvement of approximately 10 points in the second group, the researchers said.

Seven of the children receiving the Denver Model therapy showed enough improvement in their overall skills that their diagnosis was downgraded from autism to a milder condition, while only one child in the second group improved as significantly.

"We believe that the ESDM group made much more progress because it involved carefully structured teaching and a relationship-based approach to learning with many, many learning opportunities embedded in play," said Sally Rogers, a co-author of the study and professor of psychiatry and behavioral sciences at the University of California, Davis.

She also stressed the benefits of beginning the therapy at the earliest possible age.

"Infant brains are quite malleable so with this therapy we're trying to capitalize on the potential of learning than an infant's brain has in order to limit autism's deleterious effects, to help children lead better lives."

Thursday, November 12, 2009

Children With Autism More Likely To Have Handwriting Problems

Children with autism may have lower quality handwriting and trouble forming letters compared to children without autism, according to a study published in the November 10, 2009, print issue of Neurology®, the medical journal of the American Academy of Neurology.

The study included 28 children between the ages of eight and 13. Half of the children had autism spectrum disorder. The other half had no developmental, psychiatric or brain disorders. All of the children scored within the normal range for perceptual reasoning on an IQ test.

The children were given the Minnesota Handwriting Assessment Test, which uses a scrambled sentence to eliminate any speed advantage for more fluent readers. The sentence used on the test was "the brown jumped lazy fox quick dogs over." Participants were asked to copy the words in the sentence, making the letters the same size and shape as the sample using their best handwriting. The handwriting was scored based on five categories: legibility, form, alignment, size and spacing. The children's motor skills, including balance and timed movements, were also examined and given a rating.

The research found that half of the children with autism earned less than 80 percent of the total possible points on the handwriting assessment, compared to only one child in the group without autism. In addition, nine of the 14 children with autism scored below 80 percent on the form category of the handwriting assessment, compared to only two of the 14 children without autism.

"Our results suggest that therapies targeting motor skills may help improve handwriting in children with autism, which is important for success in school and building self-esteem," said study author Amy Bastian, PhD, of the Kennedy Krieger Institute and Johns Hopkins School of Medicine in Baltimore, MD. "Such therapies could include training of letter formation and general training of fine motor control to help improve the quality of their writing."

While overall quality of handwriting was worse in children with autism spectrum disorders, they were still able to align, space and size their letters just as well as children without autism.

Saturday, November 7, 2009

Aspergers:A Powerful Identity, a Vanishing Diagnosis

Published: November 2, 2009

It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.

In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.

Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.

But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.

If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.

“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.

“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”

Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”

But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.

Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”

The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.

Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.

Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.

Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.

The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.

Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.

The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.

And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not.

A big challenge for the diagnostic manual team working on autism is how to measure severity in a condition that often causes a very uneven profile of abilities and disabilities. Mr. Grossman gives the example of a woman who serves on an advisory panel to his organization. She is nonverbal and depends on an electronic device to communicate, is prone to self-injury and relies on a personal aide. And yet “she’s absolutely brilliant, she runs a newsletter, and she’s up on all the science,” he said, adding, “Where would somebody like that come out on the rating scale?”

Recent books by people with Asperger’s give insights into the workings of some oddly beautiful minds. In “Embracing the Wide Sky” (Free Press, 2009), Daniel Tammet, a shy British math and linguistic savant, tells how he was able to learn enough Icelandic in a week to manage a television interview and how he could recite the value of pi to 22,514 decimal places by envisioning the digits “as a rolling numerical panorama” of colors, shapes and textures.

In “Look Me in the Eye” (Crown, 2007), John Elder Robison describes a painfully lonely childhood and an ability to look at a circuit design and imagine how it will transform sound — a talent he used to invent audio effects and exploding guitars for the rock band Kiss.

Not all people with Asperger’s have such extraordinary abilities, and some who do are so crippled by anxiety and social limitations that they cannot hold down a job or live on their own.

Dr. Susan E. Swedo, a senior investigator at the National Institute of Mental Health who heads the diagnostic manual group working on autism, acknowledges the difficulty of describing such a variable disorder. Dr. Swedo said the plan was to define autism by two core elements — impaired social communication and repetitive behaviors or fixated interests — and to score each of those elements for severity.

The trick is to “walk the tightrope of truth,” Dr. Swedo said, between providing clear, easily used diagnostic guidance to clinicians and capturing the individual variation that is relevant to treatment. “People say that in autism, everybody is a snowflake,” she said. “It’s the perfect analogy.”

The proposed elimination of autism subtypes comes at the very moment when research suggests that the disorder may have scores of varieties. Investigators have already identified more than a dozen gene patterns associated with autism, but Dr. Lord, of Michigan, said the genetic markers “don’t seem to map at all into what people currently call Asperger’s or P.D.D.”

Nor have many of these genes been linked to distinct sets of symptoms. Until research can identify reliable biological markers for autism subtypes, Dr. Lord and other experts say, it is better to have no subtypes than the wrong ones.

n interviews, people with Asperger’s and mild autism were divided on the prospect of losing the label. Temple Grandin, a Colorado State University animal scientist who is perhaps the best-known autistic American, said Asperger’s was too well established to be thrown overboard. “The Asperger community is a big vocal community,” Dr. Grandin said, “a reason in itself” to leave the diagnosis in place.

“P.D.D.-N.O.S., I’d throw in the garbage can,” she added. “But I’d keep Asperger’s.”

But some younger people involved in the growing autism self-advocacy movement see things differently.

“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity,” said Ari Ne’eman, 21, an activist who founded the Autistic Self-Advocacy Network, a 15-chapter organization he has built while in college, adding, “I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”

All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public. Dr. Swedo and company are bracing for an earful.

Wednesday, October 7, 2009

Autism Study Putting Prevalence at 1 in 91 American Children, Including 1 in 58 Boys

Autism Speaks Responds to New Pediatrics Autism Study Putting Prevalence at 1 in 91 American Children, Including 1 in 58 Boys
New Findings Reinforce the Urgency of Autism as a Major Public Health Crisis, Requiring Intensified Action from the Public and Private Sectors

NEW YORK, N.Y. (October 5, 2009) – Autism Speaks, the nation's largest autism science and advocacy organization, today responded to a new study published in the American Academy of Pediatrics' journal Pediatrics that found a parent-reported autism prevalence rate of one in every 91 American children, including one in 58 boys. The most recent ASD prevalence estimate reported by the Centers for Disease Control (CDC) in 2007 was approximately one in 150 (including one in 94 boys), making autism the most prevalent childhood developmental disorder. Autism Speaks said the new findings reinforced the fact that autism is an urgent and growing public health crisis that affects most individuals across their lifespan and demands a commensurate level of action from both the public and private sectors.

“There is converging evidence that autism spectrum disorders affect about one percent of the population,” said Geraldine Dawson, Ph.D., Autism Speaks Chief Science Officer. “This study further emphasized that autism affects boys at a significantly higher rate. It is imperative that more resources be given to autism research so we can understand the causes and biology of autism and develop more effective treatments.”

“These new numbers should serve as a renewed call to action to take on what is clearly a major public health crisis not only in this country, but around the world,” said Bob Wright, co-founder of Autism Speaks. “People with autism are still not getting the therapies they need and adequate medical care for the medical conditions often associated with this disorder. And our society has yet to come to grips with the fact that this growing population of children with autism will become adults with autism who require a lifetime of services and support. We must act now to address these short and long-term challenges.”

The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the United States, 2007 used data gathered as part of the 2007 National Survey of Children's Health (NSCH), a national survey directed and funded by the Health Resources and Services Administration (HRSA) and Centers for Disease Control and Prevention (CDC). More than 78,000 parents of children aged 3 to 17 years were asked whether their child currently had an Autism Spectrum Disorder diagnosis – including autistic disorder, Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), or Asperger's Syndrome – or whether their child had been given that diagnosis in the past, but was no longer diagnosed with ASD.

Monday, September 7, 2009

One year later, Project Lifesaver still keeping people safe

It’s an all-too-common reality for some — a loved one with special needs wanders off.

Global Positioning System (GPS) technology is providing reassurance for dozens of families in Dane County — like the O’Leary family of McFarland.

Aidan O’Leary is an energetic, inquisitive 7-year-old. He also has a tendency to wander.

“He could hide in places, go into an empty car, go in someone’s garage,” said Lisa O’Leary, mother. “He would go with a stranger. We could be walking down the street and he slips out of my arm and he’d be in the parking lot and go right in front of a car.”

Aidan was diagnosed with autism at age 3. When his family heard about Project Lifesaver, they were one of the first to sign up. Aidan wears a one-ounce GPS tracker on his ankle, which emits a signal every second, 24 hours a day.

“From day one, he has not tried to fidget with the device, or try to get it off at all,” Lisa said. “It was basically like wearing another sock.”

Aidan’s parents check the gps battery battery twice a day, and enter it in a log book. They’re one of 26 families in Dane County who use Project Lifesaver — families dealing with autism, Alzheimer’s disease, and down syndrome.

“You’re keeping track of them 24 hours, you’re eyes are always on them, but somehow you turn your head and they can be gone,” Lisa said.

Aidan’s mother never stops worrying, she says, but if her son ever went missing, she’d know where to look.

“It’s so reassuring to know that if he’s lost, we can find him.”

Project Lifesaver is completely funded thru donations. Otherwise it would cost families $300 per year.

Sunday, September 6, 2009

Autism group probes why children love Thomas the Tank Engine

The simple stories and clear facial expressions of the Thomas the Tank Engine characters have made them a favourite among children with autism, according to a study by the U.K. National Autistic Society.

Thomas the Tank Engine, written in 1943 by Rev. Wilbert Vere Awdry, is a perennial favourite among all the under-four set, especially for boys who love trains.

But it appears to have particular appeal to autistic children, with 58 per cent of parents in an April 2007 survey reporting that Thomas was the first children's character their child enjoyed.

Most of the children discovered Thomas & Friends through the television show based on the characters, but then moved on to Thomas toys, videos and books.

Among autistic children, who often have a narrow range of behaviours, Thomas-related play was often their favourite activity, with children repeatedly watching the videos and reenacting whole scenes, including dialogue, with the toys.

"Thomas & Friends is 100 per cent responsible for getting him talking. Thomas was his life," said one parent of a nine-year-old, according to the NAS survey.

About a third of parents reported their children were able to learn basic facial expressions from the characters, as all of Thomas's friends have easy-to-read expressions — they are either happy, sad or angry.

Children with autism often have trouble decoding human expressions.

"He definitely uses the train faces to distinguish between different emotions. Thomas has helped him to get into the world of not just language but also how people feel," said another parent.

Parents also believed the characters contributed to their children's learning of colours, numbers and language.

The gentle world of Thomas & Friends, in which characters behave predictably, helped to calm some autistic children, with 54 per cent of parents reporting the stories contributed to their child's sense of security.

Children with autism enjoyed the Thomas stories and characters up to two years longer than siblings who didn't have the disorder.

The survey was answered by 748 U.K. parents of children under 10 with autism, a developmental disability.

Thomas the Tank Engine stories have been voiced by Ringo Starr and George Carlin and a new version of the TV series will feature the voice of Pierce Brosnan.

Monday, March 9, 2009

Virtual world teaches real-world skills

Game helps people with Asperger's practice socializing

If home is where the heart is, then home for a dozen people with Asperger Syndrome could be a 16-acre island blessed with lush gardens and rolling green hills.

The island is called "Brigadoon," but unlike its literary namesake, this place is real — or real enough in a 21st century way. "Brigadoon" belongs to a public virtual world called "Second Life," a popular online 3-D environment frequented by tens of thousands of users.

Tom Loftus
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If home is where the heart is, then home for a dozen people with Asperger Syndrome could be a 16-acre island blessed with lush gardens and rolling green hills.

The island is called "Brigadoon," but unlike its literary namesake, this place is real — or real enough in a 21st century way. "Brigadoon" belongs to a public virtual world called "Second Life," a popular online 3-D environment frequented by tens of thousands of users.
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"Brigadoon" is a real-world experiment in social skills made virtual, a private enclave limited to a select mixture of caregivers and individuals with Asperger Syndrome, a higher functioning form of autism. The inhabitants, or "Dooners" as they call themselves, enjoy the same privileges as those in the more public arenas of "Second Life." They are free to create their own digital representations of themselves, called "avatars," build virtual houses and seek out friends. And, most importantly, they are free to create a "second life" with a level of social interaction that, for reasons of their condition, has been hard to come by in their real lives.

Is gaming a good thing?
Talk of video gaming can set off feelings of unease among parents — no one wants a kid to be glued to a screen for hours on end. But the stakes for children with Asperger's and other autism spectrum disorders — who have difficulties with social interaction — tend to be higher.

At issue is the importance of developing enriching personal relationships and becoming a part of society. While video games can be educational and entertaining, their reputation as a solitary activity can present an impediment to progress for people with autistic disorders by limiting their exposure to social situations.

Researchers are also concerned that playing video games could simply become one of the many repetitive activities that an affected child engages in.

"One feature that highlights the risk of video games is that the behavior of children with autism can be repetitive. They like sameness and routine," says Sally Ozonoff, an associate professor of psychiatry at the MIND Institute at the University of California, Davis. This preference for repetition and familiarity often limits their experiences and prevents them from learning how to adapt to new situations.

But if used correctly, video game technology could be beneficial. "Children with autism have a natural inclination to video games and television," Ozonoff adds. "The goal is to try to exploit that inclination therapeutically."

New technology in the works
Researchers around the world are now attempting to do just that. At the University of Victoria in British Columbia, cognitive psychologist James Tanaka is using a custom-built game called "Let's Face It!" to teach facial recognition. Actually a suite of mini-games, the program uses photos, sounds and positive feedback as part of a scoring system to encourage kids with autism to learn.

"You can have kids do an exercise, but they usually don't have the richness or the continuity [of the video game]," says Tanaka.

Meanwhile, researchers at the University of Edinburgh and Glasgow Caledonian University are creating video games to study cognitive skills in children with autism using a revolutionary interface: gesture recognition software that registers the players' movements and transfers them to the screen.

"From my work, I know that a lot of children [with autism] have production skills we never would expect," says Maggie McGonigle, leader of the project and an expert on non-verbal communication. "So I'm hoping that language-like skills are locked up in their brain even if they can't speak."

But in the small world of video games with real-life applications for people with autistic disorders, "Brigadoon" stands out.

When "Brigadoon" founder John Lester, an information systems director at Massachusetts General Hospital and research associate at Harvard Medical School, discovered the virtual world "Second Life," one of the first things that came to mind was how he could share the experience.

A decade earlier, Lester had founded Braintalk Communities, a self-help support site dedicated to neurological conditions. "I'm big on creating spaces where patients and caregivers can share experiences and emotional support and essentially help themselves," he says.

"Second Life" was different. Although not exactly a game, it was rooted in 21st century game technology. In gaming parlance, "Second Life" was "immersive," a world that's both three-dimensional (think "Halo 2") and "persistent," meaning the world is always up and running.

"A lot of what's happening in 'Second Life' is social," says Lester. "And I thought that this could be a fantastic place for people dealing with Asperger Syndrome. Give them a simulated environment and let them practice social skills in a three-dimensional space."

Individuals with Asperger's usually aren't comfortable in social situations, but many display an innate understanding of computer technology. These two factors — social deficiencies and computer knowledge — made them perfect candidates to test "Brigadoon."

Last year Lester purchased a virtual island in "Second Life," invited participants from Braintalk Communities to establish a claim, and in July 2004, "Brigadoon" was launched.

Although virtual, it's possible to explore "Brigadoon" like a real-world island. On a recent personal tour, Lester and "Brigadoon" resident Jamison Read, a mother of a son with Asperger's, showed off the sights.

The tour began inside the Temple of Zeus, a meeting place positioned at the top of "Brigadoon's" highest hill. There are meeting places throughout the island — precisely the type of spaces that individuals with Asperger's would avoid in the real world.

"That's what most of the spaces around "Brigadoon" are focused on," says Lester.

The tour led to a valley and past an aquarium inhabited by a jumping shark created by an individual with Asperger's who goes by the online name of Coos Yellowknife. Nearby, a virtual screen mixed snapshots of past "Brigadoon" social events, like a virtual lobster dinner, with photos from the real-world.

"People with Asperger Syndrome get pretty 'beat up' by society," says Read. "Here they can go at their own pace and move into the mainstream."

Read originally joined "Brigadoon" to discover if the game would help her son who has Asperger's. He is still figuring out if he wants to join, but for Read there was something about "Brigadoon" — its whimsy, the ability to be creative with colorful virtual gardens and homes, and its reputation as a safe haven — that compelled her to stay.

"I have learned a lot about [Asperger Syndrome] from the adults here, so I am trying to help my son counter some of the problems he will have as an adult," she says.

"Brigadoon" is still an experiment. It is small in size — just 16-acres if the island existed in the real world — as well as in population. The world may be rich in color, but communication is limited to instant text messaging. When compared to the $10 billion video game industry, "Brigadoon" and its host world "Second Life" register as a mere blip on the radar.

But in a field where the quest to lead an enriching and "normal" life is measured by even the smallest steps, "Brigadoon" may be a sign of how video game technology can be used for good.

Lester is already convinced. "[The inhabitants] have learned a lot about themselves in how they socialize and they've gained confidence," he says.

And, as the "Dooner" named Coos wrote in a "Brigadoon" blog, "We are aliens in this RL [real world]. SL ['Second Life'] has showed me it is OK to be an alien in a strange new world!"

Monday, March 2, 2009

Study uses music to explore the autistic brain's emotion processing

Music has a universal ability to tap into our deepest emotions. Unfortunately, for children with autism spectrum disorders (ASD), understanding emotions is a very difficult task. Can music help them? Thanks to funding from the GRAMMY Foundation Grant Program, researchers at UCLA are about to find out.

Individuals with ASD have trouble recognizing emotions, particularly social emotions conveyed through facial expressions — a frown, a smirk or a smile. This inability can rob a child of the chance to communicate and socialize and often leads to social isolation.

In an innovative study led by Istvan Molnar-Szakacs, a researcher at the UCLA Tennenbaum Center for the Biology of Creativity, music will be used as a tool to explore the ability of children with ASD to identify emotions in musical excerpts and facial expressions.

"Music has long been known to touch autistic children," Molnar-Szakacs said. "Studies from the early days of autism research have already shown us that music provokes engagement and interest in kids with ASD. More recently, such things as musical memory and pitch abilities in children with ASD have been found to be as good as or better than in typically developing children."

In addition, he said, researchers have shown that because many children with ASD are naturally interested in music, they respond well to music-based therapy.

But no one has ever done a study to see if children with ASD process musical emotions and social emotions in the same way that typically developing children do.

In this study, Molnar-Szakacs will use "emotional music" to examine the brain regions involved in emotion processing.

"Our hypothesis is that if we are able to engage the brain region involved in emotion processing using emotional music, this will open the doorway for teaching children with ASD to better recognize emotions in social stimuli, such as facial expressions."

The overarching goal of the study, of course, is to gain insights about the causes of autism. Molnar-Szakacs will use neuroimaging — functional magnetic resonance imaging, or fMRI — to look at and compare brain activity in ASD children with brain activity in typically developing kids while both groups are engaged in identifying emotions from faces and musical excerpts.

"The study should help us to better understand how the brain processes emotion in children with autism; that, in turn, will help us develop more optimal interventions," Molnar-Szakacs said. "Importantly, this study will also help us promote the use of music as a powerful tool for studying brain functions, from cognition to creativity."

Approximately 15 children with ASD, ranging in age from 10 to 13, will participate in the study, which is being conducted under the auspices of the Help Group–UCLA Autism Research Alliance. The alliance, directed by UCLA's Elizabeth Laugeson, is an innovative partnership between the nonprofit Help Group, which serves children with special needs related to autism, and the Semel Institute for Neuroscience and Human Behavior at UCLA, and is dedicated to enhancing and expanding ASD research. The project is also being conducted in collaboration with Katie Overy, co-director of the Institute for Music in Human and Social Development at the University of Edinburgh, Scotland.

"The hope, of course, is that this work will not only be of scientific value and interest, but most of all, that it will translate into real-life improvements in the quality of the children's lives," Molnar-Szakacs said.

Early Intervention Lessens Impact Of Autism

ANN ARBOR, Mich. -- Contrary to popular fears that half of autistic children will never speak, new findings by the University of Michigan show just 14 percent of autistic children are unable to talk by age 9 and 40 percent can speak fluently.

Early intervention leads to better treatment, said Catherine Lord, director of the U-M Autism and Communication Disorders Center. The center has been conducting a sweeping longitudinal study of children with autistic spectrum disorders (ASD) that started when participants were age 2 and followed them over many years with most of that subject group now in their teens.

The number of children diagnosed with the disorder has increased tenfold over the past decade.

Lord, a nationally known pioneer in autism research, played a key role in learning how to properly diagnose 2-year-olds a decade ago and is making new gains diagnosing young children at the U-M center. She is confident the University's research will make it routine to diagnose autism for children just 18 months old and sometimes even younger.

While medications have helped with related conditions such as depression and hyperactivity, the best way to deal with autism is to intervene as early as possible to treat the condition, she said. Children who developed even some very simple speech skills prior to the first time they were evaluated at age 2 were far more likely to overcome the disorder that is now found in one out of every 200 children, she added.

"One third make incredible progress, with almost all children making real gains, even if they continue to have significant difficulties," Lord said. "About 5 percent of the children we have followed do not have symptoms of autism at age 9."

Another 10 percent are doing well but still have some mild social difficulties and or repetitive behaviors or interests. Another 10 percent clearly have behaviors associated with autism but are able to compensate enough to spend much of their time in mainstream activities and classes, she said. The rest do improve, but continue to have behaviors and difficulties associated with the ASD, according to Lord.

The center is also working on research showing autism "is very unlikely caused by a single gene," Lord said, adding that parents of a child with autism have only a 5 to 10 percent chance of having another child with autism. Having a fraternal twin with autism similarly gives the child the same odds of developing the disorder.

However, if one identical twin has autism, there is a 95 percent chance the other identical twin will develop ASD or a related disorder, Lord said.

Autism is a complex developmental disability that typically appears during the first three years of life. Autistic spectrum disorders impact the normal development of the brain processes related to social interaction and communication skills. Children and adults with autism typically have difficulties with verbal and non-verbal communication, social interaction and leisure or play activities.

The center is conducting many studies and is especially looking for children aged 12-24 months old whose parents are concerned about possible ASD or related communication delays as well as children from families with two or more members have the disorder. A study of normal communication development from 12 to 24 months is also under way that should yield important information about the early stages of language development. For more information about participating in the research studies, call the center at (734) 936-8600.

Wednesday, February 25, 2009

Couple Lives With Autism, Comfort of Each Other

Love Bloomed After Socializing Was Learned
Feb. 25, 2009

David Hamrick, 29, and Lindsey Nebeker, 27, look like a typical couple in love, but what's not apparent is how hard they've worked to be together.
A couple finds a connection despite both having autism.

Hamrick and Nebeker live together in a Jackson, Miss., apartment, yet they have separate bedrooms, eat meals apart and spend most of their time focused on their own interests.

This unusual setup is how Hamrick and Nebeker, who are both autistic, make their relationship work.

About 1.5 million people in the United States have autism, with varying degrees of severity. Many people with autism struggle with the most basic social interactions, so finding love may seem like an impossibility.

Hamrick and Nebeker are high-functioning but, since childhood, both have found it difficult to make friends and even harder to keep them.

"All of her socialization had to be learned, usually by hard experience," said Nebeker's father, Gordon Nebeker.

Sunday, February 22, 2009

Babies Who Don't Respond To Their Names May Be At Risk For Autism Or Other Disorders

Year-old babies who do not respond when their name is called may be more likely to be diagnosed with an autism spectrum disorder or other developmental problem at age 2, making this simple test a potential early indicator for such conditions, according to a report in the April issue of Archives of Pediatrics & Adolescent Medicine, a theme issue on autism spectrum disorders.

Although as many as half of parents of children with autism report concerns about their child's developmental progress before the first birthday, the disorder is usually not diagnosed until age 3 or 4, according to background information in the article. "Earlier identification of autism offers the possibility of early intervention, which holds promise for improving outcomes in children with autism," the authors write. "This has motivated a growing body of research that aims to ascertain the earliest reliable indicators of autism."

Aparna S. Nadig, Ph.D., of the M.I.N.D. Institute, University of California Davis, Sacramento, and colleagues assessed the tendency of infants to respond when their names are called, which is "one of the most consistently documented behaviors in infancy that distinguishes children later diagnosed with autism from those with typical development or developmental delays," they write.

Infants whose older siblings had autism, and who were therefore at risk for autism, were compared with control infants who were not at high risk of developing the disorder. While each child sat at a table playing with a small toy, a researcher walked behind the child and called his or her name in a clear voice. If the child did not respond after 3 seconds, the name was called again up to twice. Fifty-five at-risk infants and 43 control infants completed this test at age 6 months, and 101 at-risk infants and 46 control infants were tested at age 12 months.

"At age 6 months, there was a non-significant trend for control infants to require a fewer number of calls to respond to name than infants at risk for autism," the authors write. "At age 12 months, 100 percent of the infants in the control group 'passed,' responding on the first or second name call, while 86 percent in the at-risk group did."

Forty-six at-risk infants and 25 control infants were followed up for two years; three-fourths of those who did not respond to their name at age 12 months were identified with developmental problems at age 2. A total of 89 percent of infants who did not have an autism spectrum disorder (including autism, Asperger's syndrome and related conditions all defined by deficits in language and social skills) and 94 percent of infants without any developmental delays at two years responded to their name on the first two calls at one year. Of the children who were later diagnosed with autism, half failed the test at one year, and of those who were identified as having any type of developmental delay, 39 percent failed the test.

"Thus, failure to respond to name at the well-child one-year check-up may be a useful indicator of children who would benefit from a more thorough developmental assessment," the authors write. "It will not, however, identify all children at risk for developmental problems."

"Since this task is easy to administer and score and takes few resources, it could be incorporated into well-child pediatric visits at 12 months of age," they conclude. "If a child fails to orient to name, particularly reliably over time, this child has a high likelihood of some type of developmental abnormality and should be referred for more frequent screening, comprehensive assessment and, if indicated, preventive early intervention."

Important Clue To Learning Deficit In Children With Autism

A study by researchers at the UC Davis M.I.N.D. Institute has discovered an important clue to why children with autism spectrum disorders have trouble imitating others: They spend less time looking at the faces of people who are modeling new skills.

The study was conducted using high-technology eye-tracking headgear and software that measures with precision the point at which a child is looking when learning a task. Researchers used an actor to demonstrate a task on a computer screen.

"We found that the children with autism focused on the demonstrator's action and looked at the demonstrator's face much less often than did typically developing children," said Giacomo Vivanti, a postdoctoral researcher at the M.I.N.D. Institute and the study's lead author. "The typically developing children may be looking at the demonstrator's face to check for information on what to do or how to respond appropriately, information that the children with autism are less inclined to seek. This is an important finding, because children with autism have difficulty learning from others. This might be one key to why that is so," Vivanti said.

Imitation plays an important role in how children learn, as well as in how people interact socially, said M.I.N.D. Institute researcher and senior study author Sally J. Rogers, who has been studying imitation impairment and autism for more than 20 years. "This is a trait we see as early as we can diagnose autism, and it's one of the traits that is present even in mildly impaired adults," Rogers said.

Impaired imitation leads to additional impairments in sharing emotions, pretend play, pragmatic communication and understanding the emotional states of others. For years, scientists thought that children with autism and related disorders had trouble with learning through imitation because they had poor motor skills or because they did not pay attention to the action being performed. The current study rules out these hypotheses.

"We now understand more about how this imitation deficit might be working and, after more study, we may actually be able to address it in a way that helps children with autism develop a more natural set of behaviors," said Rogers, a UC Davis professor of psychiatry and behavioral sciences.

In the current study, which was published online in June and will appear in print in November in the Journal of Experimental Child Psychology, 18 children aged 8 to 15 with high-functioning autism were carefully matched with a group of 13 typically developing children. While wearing special eye-tracking headgear, the children were shown video clips that ranged from seven to 19 seconds in length. After viewing each clip, the children performed the demonstrated action. The results confirm previous research that shows that children with autism have difficulty imitating tasks when compared to normally developing children. It also showed that children with autism paid just as much attention to the action being performed as the other children in the study, ruling out previous hypotheses about poor attention to the task.

"This finding is particularly important," Rogers said. "Now we can rule out this variable. We know these children are looking at the task."

Researchers also found that successful performance of a task by children with autism increases with the amount of time they study it but is not correlated with their basic motor skills, ruling out the possibility that it is a lack of motor ability causing the imitation effect.

Finally, the study showed that both groups of children shifted their attention from the action to the demonstrator's face, but the children with autism did this much less often.

According to Rogers, this finding suggests that imitation is not just about repeating an action, but understanding the reason for the action.

"That information is conveyed in our faces," she explained.

Rogers and Vivanti are continuing to try to understand how this difference in looking at faces affects more complex forms of learning and understanding.

"We are looking at how children look at emotions and intentions that are conveyed in a demonstrator's face and how looking at this information in faces or not looking at them may affect how they understand and imitate the observed actions," Vivanti said.

Based on these studies, Vivanti and Rogers hope to one day develop studies aimed at determining whether or not face-looking is an important part of the imitation process. "It could be that if people with autism could be better at reading emotion they might naturally start to imitate their models the way like other people do," Rogers said. "If it's about how people understand the information in a face, then it gives you a target for intervention."

Computer Game Helps Autistic Children Recognize Emotions

An interactive computer software program called FaceSay™ has been shown to improve the ability of children with autism spectrum disorders (ASD) to recognize faces, facial expressions and emotions, according to the results of a study conducted by psychologists at the University of Alabama at Birmingham (UAB). FaceSay™, created by Symbionica L.L.C., features interactive games that let children with ASD practice recognizing the facial expressions of an avatar, or software “puppet.” Specifically, the computer games teach the children where to look for facial cues such as an eye gaze or a facial expression.

The study found that the children with Asperger Syndrome who used the FaceSay™ program made significant improvements in their ability to read facial expressions. The children with autism made less improvement. Children in both the autism and Asperger groups, however, both improved their ability to recognize emotions.

Specifically, the children with autism who used FaceSay™ averaged a mean score of 14.8 on a facial recognition test. The control group averaged 12.8. The children with Asperger Syndrome scored much higher with an average score of 18.4 compared to 15.4 by the control group.

On an emotion recognition skills test, the children with autism who used FaceSay™ scored an average of 6.53. The control group’s average score was 5.2. The children with Asperger Syndrome had a mean test score of 8.7 compared with the control group score of 6.79. UAB doctoral student Maria Hopkins, Ph.D., and UAB associate professor of psychology Fred Biasini, Ph.D., conducted the study.

Autism spectrum disorder includes a range of developmental disorders such as autism, Asperger Syndrome and other pervasive developmental disorders. Children with ASD often avoid eye contact with others, which prevents them from perceiving and understanding the emotions of others. Many have problems remembering faces.

Hopkins and Biasini tested 25 children with autism and 24 children with Asperger Syndrome. The children ranged in age from 6 to 15, with an average age of 10 years. The group consisted of 44 boys and five girls. The computer training sessions were held twice a week for at least six weeks for an average of 20 minutes each session. The software featured three interactive games.

Psychologists at UAB plan to conduct more studies to assess the longtime effects of the FaceSay™ intervention.

The study’s results were presented recently at a meeting of the Association for Psychological Science.

Surprising Language Abilities In Children With Autism

What began as an informal presentation by a clinical linguist to a group of philosophers, has led to some surprising discoveries about the communicative language abilities of people with autism.

Several years back, Robert Stainton, now a philosophy professor at The University of Western Ontario, attended a presentation by his long-time friend Jessica de Villiers, a clinical linguist now at the University of British Columbia. The topic was Autism Spectrum Disorder (ASD). De Villiers explained that many individuals with ASD have significant difficulties with what linguists call "pragmatics." That is, people with ASD often have difficulty using language appropriately in social situations. They do not make appropriate use of context or knowledge of what it would be "reasonable to say." Most glaringly, many speakers with ASD have immense trouble understanding metaphor, irony, sarcasm, and what might be intimated or presumed, but not stated.

Drawing on his philosophical training, however, Stainton noticed less-than-obvious pragmatic abilities at work in de Villiers' examples, which were drawn from transcripts of conversations with 42 speakers with ASD -- abilities that had been missed by clinicians.

Thus began research to more clearly understand and define the conversational abilities and challenges of people with Autism Spectrum Disorder (ASD). Stainton and de Villiers' research, in collaboration with Peter Szatmari, a clinical psychiatrist at McMaster University, has shown that indeed, many individuals with ASD do have "a rich array of pragmatic abilities."

These researchers do not contest the well-established claim that people with ASD have difficulty with non-literal pragmatics, such as metaphors ("Juliet is the sun") or irony/sarcasm ("Boy, is that a good idea"). They have, however, found that many speakers with ASD do not show the same difficulty with literal pragmatics. An example is the phrase, "I took the subway north" from a transcript of a conversation with a research participant with ASD. The use of the word "the" could indicate there is only one subway in existence going north. "The subway" could also be referring to a subway car, a subway system or a subway tunnel. Taking account of the context and the listener's expectations, however, the individual using the phrase was able to convey the specific meaning he intended. That is, he used pragmatics effectively.

In short, Stainton and his colleagues produced surprising evidence to show that speakers with ASD use and understand pragmatics in cases of literal talk, as in the subway example.

Stainton, who is also Acting Associate Dean of Research in the Faculty of Arts and Humanities at Western, says, "It is especially gratifying and encouraging, because this is an Arts and Humanities contribution to clinical research. Without a philosophical perspective, this discovery might not have been made."

Related research allowed de Villiers and Szatmari to develop a rating scale of pragmatic abilities that can be used in the clinical assessment of people with ASD. Stainton says, "In the short term, their new tool will help identify where an individual fits on that spectrum. In the longer term, however, by making use of recent results in philosophy of language, it may contribute to our theoretical understanding of the boundary between knowledge of the meanings of words, and non-linguistic abilities -- specifically pragmatics."

Stainton believes that both clinicians who work with people with ASD, and language theorists who are interested in pragmatics for philosophical reasons, will find these results striking.

ASD affects approximately one in 165 people. The results of the research, conducted from a study of 42 children with autism and Asperger's Syndrome, has been published in the journal, Midwest Studies in Philosophy.

Saturday, February 21, 2009

Making headway - With work, 3-year-old showing improvement

RONAN - The little boy works so hard to put the 12-piece jigsaw puzzle together. Watching him concentrate as he twists the pieces round and round, searching for two that will interlock, borders on nerve-wracking.

It's his first time with this particular puzzle. His frustration grows incrementally with your anxiety, and occasionally he emits an “Ee-oh-ee-oh-ee-oh” sound that, his mother is sure, is his version of a string of cuss words that would make a sailor blush.

Slowly but surely the “Snow White” scene comes together, until there is just one piece left to complete the picture.
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He's so close, so many times, and you want with all your heart to reach out and help him maneuver it that last fraction of an inch, so that it will fall into place for him.

But you don't.

You can't.

It's fine to help him, but he needs to learn to ask for help before you give it to him.

So until he does, the piece is twisted and pushed, twisted and pushed, the “Ee-oh-ee-oh-ee-oh” growing louder.

Suddenly, it's there, perfectly positioned. Decker Cote, age 3 1/2, shoves down on it and it locks in with the rest of the puzzle.

His eyes light up. Every adult in the room screams as if their underdog had just won the Super Bowl.

His teacher, Holly Porter, gives him a high five, then lifts the giggling boy and throws him into the air.

Back on the ground, Decker runs to his mother, Charlie Cote, who picks him up, nuzzles him, and tells him, “You're so smart. I'm so proud of you.”

In reality, it's only been six or seven minutes since Decker started the puzzle, but it seems like a lifetime.

And if you want to know why everyone is so excited about every little task that Decker Cote successfully completes, you need only to have known the little boy 10 short months ago.

Will and Charlie Cote's young son would foam at the mouth, bite himself until he drew blood, tear his hair out by the fistful, choke himself until he would vomit 20 times in the space of five minutes.

Decker Cote suffers from autism.

“It was so disturbing,” Charlie says. “All you could do was hold his arms by his side while he screamed, because you didn't know what else to do.”

Trips to the grocery store were a nightmare - the boy would end up underneath the shopping cart, his little fingers wrapped around the cart's bottom in a death grip, screaming bloody murder all the way. The family - which includes Decker's older brother Carter, now 6, and little sister Timber, who is 2 - quickly gave up on any outing that wasn't necessary.

The boy would sit in front of a kitchen cupboard and slam the door repeatedly for hours on end if you let him, finding some strange sort of comfort in the “bam” sound that echoed back at him endlessly.

Make him stop and he'd throw a skin-biting, hair-pulling, screaming and crying fit of monumental proportions.

The longest tantrum reached 17 consecutive hours.

“As a family, we fell off the face of the earth,” Charlie says. “We couldn't even go to dinner at my folks' house - any change in Decker's world turned ours upside-down for two to three days.”

It hadn't always been like this. For the first 12 months of his life there was nothing abnormal about Decker's behavior or development.

“He had speech as an infant,” Charlie says, “and just lost it. It was babbling, his own language, but it was there - ‘nana' for food; ‘hot,' he said it and knew what it meant, whether it was food he was eating or when I put him in the tub. He called his sister ‘Nice' because we were always saying, ‘Be nice to the baby.' ”

Just as important, Charlie says, Decker was “totally engaged” as an infant, smiling and giggling through games like “peek-a-boo.”

Then, over two to three months, it all went away, vanishing the way a setting sun leaves a world pitch black.

“He not only quit using the words he had developed, he didn't know what we were talking about when we used them,” Charlie says.

Most disturbing was the baby's refusal to look at his mother or father, or anyone else.

“You couldn't even force him to,” Charlie says. “If you tried to make him make eye contact, he'd cry like you'd slammed a door on his hand.”

It was a gradual slide. His parents were as confused as they were concerned.

“Will would say, ‘Is that right?' ” Charlie says. “Kids can be quirky, and we weren't sure. Timber was a new baby - was he just jealous? But it started getting to be too many things, there were too many signs.”

Decker Cote was disappearing into his own, strange, unknown world.

One of Will and Charlie's first thoughts was that Decker might be losing, or have lost, his hearing. It would explain why he wasn't talking anymore.

At the Confederated Salish and Kootenai Tribal Health Clinic, Eve Tolbert tested the not-yet-2-year-old.

“Decker was way out of hand, and I think she knew,” Charlie says of Tolbert. “I think it's the first time I heard anyone say the word ‘autism.' ”

A trip to the Child Development Center in Missoula for an autism spectrum disorder evaluation was next, but the Cotes discovered there was a long waiting list to get in.

“It's a bummer, because early intervention is critical,” Charlie says. “We were put on a call list. We were quite certain by this time it was autism, but I wanted to be wrong so bad you can't believe it. We weren't craving the diagnosis, but you have to have it before you can get services.”

It took six months to get in, but once there, Charlie says the team that diagnosed Decker with autism was exceptional. William Cook, the doctor who broke the news to Will and Charlie, was “just great,” she says. “There was nothing clinical about it. He was such a human being. You could tell it just broke his heart to tell us.”

One of the possible reasons?

“I've often thought, ‘What if Decker had been diagnosed with cancer?' ” Charlie says. “That would be terrible, too, but at least with a cancer diagnosis they can tell you what to do - you do this, you do that, you get sent to Seattle, there are actions you take. When the diagnosis is autism, there is no game plan. You've got to go find it.”

And so Charlie Cote did. In fact, she had started before the official diagnosis was delivered.

Her one rule: Avoid the Internet.

“You can get eaten up by all the information on the Internet,” she says. “Try this diet, use these biomedical treatments, try this drug or that injection. I wanted to find something that's been done for a while, and that works. I didn't want to experiment on him. It's my child.”

Her best source, Charlie says, was a book, “Facing Autism,” by Lynn Hamilton.

“All your homework done by a mom who's gone ahead of you,” she explains.

That helped lead her to the work of Dr. O. Ivar Lovaas, a UCLA professor with four decades invested in autism research. The Lovaas approach to Applied Behavior Analysis, Charlie says, is simple. It rewards and praises appropriate behavior in an autistic child and ignores irresponsible behavior.

If the child completes a task successfully - it can be as simple as placing a block in a bucket - they “get a big party,” Charlie says. “It can be licking a sucker, or getting tickled, or playing with a toy they like, or throwing them into the air and swinging them around.”

If they don't do it, there's no punishment - but there's no party, either.

It does sound simple, and at its core, it is.

But each child with autism is different, and there is a lot of work involved in getting a tortured child like Decker from where he was last March, to where he is today.

Their first step was to contact Steven Michalski, founder and director of the Redwood Learning Center in Sandy, Utah.

Michalski had studied under Lovaas at UCLA.

Twenty-eight-year-old Will Cote and his father operate two Mission Valley businesses, a welding and fabricating shop and Cross Diamond Boom, a crane service. Will and Charlie also have a small cow-and-calf operation on their ranch west of Ronan, plus run the ranch next door that belonged to Charlie's parents after her father passed away.

To several full-time jobs the Cotes added another: Recovering their son from the grips of autism.

There are arguments about whether autism is a disease or a disorder, and arguments about how to treat it, but the Cotes chose the route with 40 years to back it up.

Will remodeled his workshop on the ranch into a classroom for Decker. Charlie hit up dozens of local businesses for help, organized a fundraising spaghetti feed that drew so many people from the community - 600 - that both Ronan's grocery stores were emptied of their hamburger and sauce before the night was over, and lined up a group of friends, family and neighbors who would become Decker's teachers.

Michalski traveled from Utah to conduct a three-day workshop to teach the teachers how to teach Decker.

Most of the group was stunned when Michalski began working with the boy, then 2 1/2, for the first time, and they saw what they were getting into.

“Decker did everything but pull a knife on Steve,” Holly Porter says. “He was biting and hitting and scratching and kicking, and the tantrum seemed to last for days.”

“To Will and I it was nothing we hadn't seen every day for a year,” Charlie says. “All the teachers were crying, but to us that day was a launching pad for getting our son back.”

Michalski delivered an important message that day to Decker's new battalion of teachers, which include Porter, Marge Coursen, RaLynn Brown, Joanne Ploskunak, Jody Jones and Lisa Jones-Park.

“Don't react to his behavior, stay neutral,” Coursen says. “Keep him in his chair working - if he's doing his ring-stacker, physically take his hand and make him keep putting rings on it.”

“He showed us all that we're battling autism, not Decker,” Charlie says.

The therapy demands a lot from the 3-year-old.

It lasts eight hours a day. A pair of three-hour sessions in the home-built classroom on the ranch are interrupted at midday by two hours in town at Ronan's Head Start program, which Charlie says has gone “above and beyond” to help.

Even when school's out, it's not, not really.

The same sort of exercises and routines from his daytime teachers continue on into the evenings, on weekends, every day of the year with his parents.

Charlie and Will had Decker into the classroom on Christmas Day, New Year's Eve.

“The autism doesn't take a day off,” Charlie explains, “so neither can we.”

But the progress has been stunning to them. Charlie says 40 percent to 50 percent of children diagnosed with autism, if in the right range on the spectrum chart and treated early enough with ABA, can recover huge amounts of their speech and social skills.

Consider the child jigsaw puzzles. When they first started working the puzzles, the puzzles were whole save for one piece that the teachers would remove and hand to Decker.

That's all he could handle just a few short months ago. One piece, and it took him as long to figure it out as it does to do an entire puzzle from scratch now.

The battery of teachers painstakingly charts how he did on each exercise, and how much time it took.

Once a week, they gather with Charlie for a two-hour session to plan out the coming week.

Michalski flies up from Utah every few weeks to read over the charts, work with Decker and offer directions for his therapy. His services cost $150 an hour plus expenses, and $75 for phone or e-mail communication from Utah.

But Charlie says Michalski never charges for conversations that last just a few minutes, or simple e-mails. He's fine with sleeping in the bunkhouse next door on her mother's property, and many of his flights have been covered by folks in the Mission Valley who have donated frequent-flier miles.

The Cotes' goal is for Decker to recover enough that they can enroll him in a regular kindergarten class by the time he's 6.

Their son's autism has been “quite possibly the biggest challenge we will face in our lifetimes,” Charlie and Will say.

But the puzzle is coming together.

Day by day, Decker Cote is emerging from a terrifying world not of his making.

Piece by piece, Will and Charlie are getting their son back.

Measure requires insurers to provide coverage for autism

By VINCE DEVLIN of the Missoulian

RONAN - Will and Charlie Cote thrust their plight - and that of their 3 1/2-year-old son, Decker - into the public eye last week, when they traveled to Helena to testify in favor of Senate Bill 234.

Sponsored by Sen. Kim Gillan, D-Billings, “Brandon's Bill” would require insurance companies to provide coverage for the diagnosis and treatment of autism.

Eight states - Arizona, Florida, Louisiana, Illinois, Indiana, Pennsylvania, South Carolina and Texas - have enacted autism insurance reform legislation, and Montana is one of several more considering similar bills during the current session.

According to Autism Speaks, a national organization that backs the legislation, most states do not require private insurance companies to cover even essential autism treatments and services.

“In the absence of coverage, families often pay as much as they can out of pocket for services that can cost upward of $50,000 per year,” Autism Speaks says. “In the process, many risk their homes and the educations of their unaffected children - essentially mortgaging their entire futures.”

To Charlie Cote, it makes no more sense than it would be to allow health insurance companies to refuse to pay for chemotherapy for a person covered by insurance and diagnosed with cancer.

“We're trying to save our son's life,” she says of the aggressive Applied Behavior Analysis approach they've elected to take with Decker (see accompanying story).

It costs the Cotes $4,000 to $5,000 a month.

“Decker,” she told the committee, “has begun a beautiful transformation. A year ago, he was in discontent 90 percent of his day. He would tantrum for hours on end. Decker went 18 months without sleeping a night through. When he was sleepless he was injuring himself by pulling his own hair out, biting through his own skin, choking and gagging himself to vomit multiple times in a matter of minutes. He lost all speech and all eye contact (and) withdrew into this unpredictable world.”

“These are not moments pulled from our darkest days,” Charlie went on. “This was every day. Our family changed. We became a family with autism.”

ABA, one of the treatments SB 234 would require insurance companies to cover, has made such a huge difference in the life of Decker and his family, Charlie says, that it's hard to put into words.

The Cotes are lucky, she says, to have family and friends and neighbors - really, the entire community of Ronan - to lean on for help in paying for and delivering to Decker the care he needs.

“When we were in Helena,” she says, “I couldn't help thinking what it would be like for a 19-year-old single mom to try to deal with what we're dealing with.”

SB 234 would require insurance companies to cover diagnosis, rehabilitative, pharmacy, psychiatric, psychological and therapeutic care and ABA treatments, up to $50,000 a year.

“We are in favor (of SB 234) not only for the benefit of our own son, but for every child that follows behind him,” Cote told legislators. “Unfortunately, there will be many. Let us as a state embrace them, and give them the treatment that they need and deserve.”

Thursday, February 12, 2009

Vaccines don't cause autism, special court says

WASHINGTON – Vaccines aren't to blame for autism, a special federal court declared Thursday in a blow to thousands of families hoping to win compensation and to many more who are convinced of a connection.

The special masters who decided the case expressed sympathy for the families, some of whom have made emotional pleas describing their children's conditions, but the rulings were blunt: There's little if any evidence to support claims of a vaccine-autism link.

The evidence "is weak, contradictory and unpersuasive," concluded Special Master Denise Vowell. "Sadly, the petitioners in this litigation have been the victims of bad science conducted to support litigation rather than to advance medical and scientific understanding" of autism.

Science years ago reached the conclusion that there's no connection, but Thursday's rulings in a trio of cases still have far-reaching implications — offering reassurance to parents scared about vaccinating their babies because of a small but vocal anti-vaccine movement. Some vaccine-preventable diseases, including measles, are on the rise, and last fall a Minnesota baby who hadn't been vaccinated against meningitis died of that disease.

The special court represented a chance for vindication for families who blame vaccines for their children's autism. Known as "the people's court," the U.S. Court of Claims is different from many other courts: The families involved didn't have to prove the inoculations definitely caused the complex neurological disorder, just that they probably did.

More than 5,500 claims have been filed by families seeking compensation through the government's Vaccine Injury Compensation Program, and Thursday's rulings dealt with the first three test cases to settle which if any claims had merit. The first cases argued that a combination of the measles-mumps-rubella vaccine plus other shots triggered autism.

"I must decide this case not on sentiment but by analyzing the evidence," said Special Master George Hastings Jr., writing specifically about Michelle Cedillo of Yuma, Ariz., who is disabled with autism, inflammatory bowel disease and other disorders that her parents blame on a measles vaccine given at 15 months.

"Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment," Hastings concluded.

Attorneys for the families said they were disappointed and may appeal.

"There was certainly no scientific proof that vaccines caused autism, but that's not the standard; the standard is likelihood," said Kevin Conway of Boston who represented the Cedillos. "We thought our evidence was solid."

"Certainly those three families are discouraged with the ruling," added Tom Powers, a Portland, Ore., attorney overseeing all the claims. "It's a big step, it's a significant step but it's not the last step."

Indeed, the court's ruling will do little to change the minds of parents who believe vaccines have harmed their children, said the head of a consumer group that questions vaccine safety, the National Vaccine Information Center.

"I think it is a mistake to conclude that because these few test cases were denied compensation, that it's been decided vaccines don't play any role in regressive autism," said Barbara Loe Fisher, the center's president.

The court still must rule on additional cases that argue a different link — that vaccines that once carried the mercury-containing preservative thimerosal are to blame, if the mercury reached and damaged brain cells — and Powers said families making those claims remain hopeful. The court has given no timetable for a ruling.

But Thursday's rulings clearly gave great credence to numerous large studies that have looked for but not found any link between the measles vaccine, other vaccines and autism.

"Hopefully, the determination by the special masters will help reassure parents that vaccines do not cause autism," the Department of Health and Human Services said in a statement that pledged to continue research into possible causes and better treatments.

"It's a great day for science, it's a great day for America's children when the court rules in favor of science," said Dr. Paul Offit, an infectious disease expert at the Children's Hospital of Philadelphia and developer of a vaccine for rotavirus.

"A choice not to get a vaccine is not a risk-free choice," Offit added, pointing to recent outbreaks of vaccine-preventable diseases that authorities suspect are partly due to delayed or rejected vaccinations.

Autism is best known for impairing a child's ability to communicate and interact. Recent data suggest a 10-fold increase in autism rates over the past decade, although it's unclear how much of the surge reflects better diagnosis.

Worry about a vaccine link first arose in 1998 when a British physician, Dr. Andrew Wakefield, published a medical journal article linking a particular type of autism and bowel disease to the measles vaccine. The study was soon discredited, and British medical authorities now are investigating professional misconduct charges against Wakefield.

Then came questions about thimerosal, a preservative that manufacturers began removing from all vaccines given to infants in 2001. Today it is present only in certain formulations of the flu shot.

Wednesday, January 14, 2009

Pre-natal test may detect autism

LONDON, Jan. 12 (UPI) -- British researchers say high levels of testosterone discovered during pre-natal testing may indicate a risk of autism.

Cambridge University scientists say the testosterone levels were determined using amniotic fluid removed from pregnant mothers through amniocentesis, which is used to detect Down syndrome in unborn infants, the Guardian newspaper reported Monday.

Lead researcher Simon Baron-Cohen said there needs to be a debate over the consequences of testing for autism. Many people with autism have extraordinary abilities in mathematics and music.

"If there was a pre-natal test for autism, would this be desirable?" he said. "What would we lose if children with autistic spectrum disorder were eliminated from the population?"

Researchers from Cambridge's autism research center discovered the testosterone link after studying 235 children from birth to the age of 8. Children with high levels of testosterone before birth showed autistic traits such as a lack of sociability and verbal skills by the time they were 8, the newspaper said.

Animated series helped children with autism recognize emotions: study

SASKATCHEWAN (CBC) - Some children with autism showed significant improvements in recognizing and understanding emotion after viewing an animated series created by British autism researchers, a new study indicates.

In an article published in the Journal of Autism and Developmental Disorders, researchers describe their study of 20 high-functioning children with autism age 4 to 7.

Over four weeks, the children watched at least three episodes of an animated series created for autistic children called The Transporters. The series, developped by the Autism Research Centre at Cambridge University in conjunction with the U.K. government, features computer-animated trains, trolleys, ferries and cable cars with the faces of real-life actors expressing emotions.

"The children with autism who'd watched the DVD not only improved on recognizing [emotion on] faces … they'd seen before but even on new faces," said study author Prof. Simon Baron Cohen, director of Cambridge centre.

"So, this suggested they hadn't just mimicked. They'd actually learned the concepts and could apply them in novel ways," added Baron Cohen, who helped to develop the DVD.

Jo-Lynn Fenton of Halifax has been waiting for The Transporters to be released in Canada for the past two years. She hopes the series will help her son, Rhys, who has autism, which makes it difficult for him to recognize and communicate emotion.

"He can identify the emotions, but he can't always put the emotions in the right context," she said.

Each short episode focuses on a specific emotion and the facial cues associated with it. After each episode, there is an interactive quiz.

Children with autism who watched the DVD for 15 minutes a day over a one-month period caught up with other children in their ability to recognize emotions, said Baron Cohen, unlike children who did not watch the series.

More research is needed to look at how long the effects may last and whether the benefits apply to all children in the autism spectrum.

The DVD will be ideal for young children with good language skills, but there is a drawback, said Dr. Susan Bryson, an autism expert at IWK Health Centre in Halifax.

"For a lot of children, what's particularly difficult is picking up emotion in faces when it’s a little more subtle, not so exaggerated," said Bryson. "But this is probably a good starting point."

The British research team isn’t making a profit from the DVD — 25 per cent of the proceeds will go to autism charities, and the rest will be used to make more episodes.

The Transporters series sells online for about $60 and is available in North America as of this week.