Still a mystery, autism spectrum cases growing rapidly

Date Published | May 30, 2007


BY DAVID DUCHARME

It has quickly become one of the biggest issues in medical science, and the fastest growing developmental disorder worldwide.

It’s commonly known as autism. But autism spectrum disorder (ASD) is now the umbrella idiom for the group of neurological disorders to which children are born predisposed.

No one person with an ASD responds or behaves exactly like another, even with the same diagnosis. But each has common ties.

Autism affects and changes the way the brain processes information, resulting in difficulties with communication and social interaction; unusual patterns of behaviour, activities and interests.

Disturbingly, what causes and triggers ASD is still unknown. The frequency of diagnosed cases, however, is increasing at an alarming rate.

The autism field is a young one.

Coined by Leo Kanner in a 1943 research paper entitled, Autistic Disturbances of Affective Contact, the term ‘autistic’ literally translates to “alone.”

An excerpt from that paper reads, “Since 1938, there have come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far, that each case merits - and, I hope, will eventually receive - a detailed consideration of its fascinating peculiarities.”

Kanner’s subjects each displayed symptoms of communicative and interactive difficulties and unusual interests. The children he identified were (often) previously labelled as schizophrenic and institutionalized.

Classic autism is a common spectrum disorder. It’s symptoms are “classic” in that they are most often associated with autism. They include: a lack of formal communication; rocking, head banging and hand flapping, lack of eye contact and the inability to interact socially. It is a spectrum disorder because its impairments differ greatly on a case-by-case basis.

Asperger’s Disorder is a fascinating, rare segment of the spectrum. Those with Asperger’s are often extremely high functioning, intelligent and verbal. However, they have difficulty with social interaction, interpreting unspoken social cues and are prone to eccentric behaviour.

They can become experts on topics and may only want to discuss those topics, but are unaware that what they are interested in may be of little interest to others.

Comedian Dan Aykroyd is one of the few public figures in Canada to have openly discussed having the disorder.

“I have a fascination with police and I always have to have a badge with me,” Aykroyd said in a 2004 NPR interview. “My grandfather was a Mountie. If I don’t have a badge on me, I feel naked.”

Aykroyd was diagnosed with Tourette’s syndrome and Asperger’s as a child in the early 1960’s.

Albert Einstein and Sir Isaac Newton are among history’s diagnosed or ASD suspected.

No biological marker is linked to autism. There is no chromosomal or blood test in existence to indicate if a child is autistic.

To be diagnosed, children must be observed displaying: difficulty with social interaction, impairment in communication and a pattern of restricted interests.

But the expression of symptoms can vary greatly among individual children. Also, kids labelled “normal” can often be observed behaving in ways generally classified as autistic.

So the question becomes not only does a child truly have a particular symptom, but also to what degree do they have it and where in the spectrum does a child fit?

The process can be quite subjective, according to Sudbury pediatrician Dr. Shawn Murray.

Murray is a specialist in the diagnosis and medical treatment of ASDs. He says a variety of factors combine to make assessment and diagnosis difficult for everyone.

“Once families are in a professional’s office, it becomes a balancing act. The diagnosis still has a stigma attached to it as well. It can take a lot of time for families to come to terms,” he said.

Murray is among a small group of three local doctors struggling to keep up with the sharp rise in ASD caseload. With a lack of services in Sudbury, long waiting lists can leave families in a state of limbo.

“From a resource point of view, it can be very difficult to get a timely diagnosis,” added Murray.

Early intervention is key. But barriers to formal, standardized treatment in Sudbury are a lack of available professionals, waiting lists and expense.

Applied behaviour analysis (ABA) is the most widely accepted form of treatment for autism. ABA is a behavioural modification approach to learning based on the work of Dr. B. F. Skinner. Highly structured and rigorous, it is centred on behaviour analysis and one-on-one teaching, making strategic use of rewards.

Intensive behavioural intervention (IBI) is based on the basic principles of ABA and is most effective in teaching pre-school-aged children. IBI includes frequent and direct measurement of a child’s development, making changes in learning or behaviour highly discernable.

Speech and language therapies are often effective in less severe cases.

While families continue to cope with the realities of ASD, Canada’s federal, provincial and territorial governments have a challenge ahead in allocating resources at a level that matches the rise in caseload.

And as research continues, medical science is left to fuse together a jumbled mix of traditional views and new findings.

The Yale School of Medicine released a study on April 21 of this year that found toddlers with ASD who have trouble making eye contact with people do not have difficulty in looking at photographs of faces. They also spend most of the time looking at photos examining…the eyes.

“This is a surprising finding, given that avoiding eye contact is one of the classic hallmarks of autism,” said Chawarska, in a Yale University news release.

Such are the mysteries of autism.

Autism on the rise

Local schools, families struggle to keep up

By Monique Balas / The Bulletin

Published: May 20. 2007 5:00AM PST

Colin O'Connor's mischievous blue eyes twinkle when he laughs, which is often, and he moves with a frantic energy. The 6-year-old enjoys playing games with his stuffed dolls, using them to mimic social situations, and he is friendly to strangers.

Colin is also autistic.

Autism, a developmental disorder that has no known cause, comes in as many shapes and sizes as children do. The fact that there are so many more children with the disorder now than there were only six years ago presents unexpected challenges for school districts and families of children with autism.

Colin's mother, Terri O'Connor, estimates her family spends about $2,000 each month to supplement her autistic son's education with tutors, a slew of therapists - speech, occupational, physical - and a developmental physician to work with Colin.

"The district has provided as best they can," she said. "What my experience is, their caseload is astronomical. There is just no way that they can think about my child ... 10 minutes before they have to meet with me."

The O'Connors, the school district and the High Desert Education Service District have all been feeling the effects of a creeping increase in the number of students diagnosed with some form of autism.

In Bend-La Pine Schools, there currently are 124 students receiving specialized education for autism, said Patti Craveiro, director of special programs for Bend-La Pine Schools. In December 2001, there were 67, an 85 percent increase in six years.

By comparison, the district saw a roughly 13 percent increase in student enrollment in that same time period, according to numbers from Fiscal Services Director Brad Henry.

"For a town that I still consider to be small compared to Portland, San Francisco or L.A., I think there is a very large number of children that receive a diagnosis on a continual basis with ASD (autism spectrum disorder)," said Tracy Kennedy, the lead teacher of Stepping Stones School. Kennedy's school is a preschool program offered by the High Desert ESD for children ages 3 to 5 with autism spectrum disorder.

"They're coming here, and we're doing our best to serve them," Craveiro said.

But some parents say the district simply cannot provide the type of one-on-one attention their children need to succeed.

"They don't have enough time. They don't have enough resources to give a kid resources to get him talking," said Jill Sauter, who home-schools her autistic son, Derek.

She decided to take Derek, 14, out of school because she said he needs attention he simply cannot get in the classroom. Derek had trouble speaking and reading. But thanks to the time he and his mom spent doing mouth drills, with Sauter rewarding him with positive reinforcement, she said his skills have greatly improved. He is now an eighth-grader and only goes to High Desert Middle School for physical education class.

If the school district were to integrate Derek into a regular education classroom, his mother said, he would fall too far behind.

"They're doing book reports, he's trying to read," Sauter said. "He's learning how to put letters together to make a word."

But if he were grouped with other students with disabilities, he risks falling even further behind, Sauter said.

"If he was in a room with 10 other kids that had autism, he's not going to succeed in that situation," she said. "He needs to be with peers that can talk and ask questions."

What is autism?

Because of its many forms, autism usually is referred to as a continuum, which is why it is referred to as a spectrum disorder.

Autism spectrum disorders are developmental disabilities that cause major impairments in social interaction and communication, sometimes resulting in unusual behaviors and interests. People with ASDs often learn, think and react differently than other people, according to the Centers for Disease Control and Pre-vention Web site.

For example, during a recent session at home with his private reading tutor, Heather Wingate, Colin worked on phonetics.

Wingate encouraged Colin to make an "ah" sound.

"Ahhhh," Colin responded, tapping his mouth repeatedly with his hand. Wingate then began a grammar lesson.

"Leo and Quincy was a very good boy," Wingate read aloud from a book. "Should we keep the 'was?'"

"I have brown hair!" Colin responded.

Autism rates are going up nationally. The CDC reported in February that about one in every 150, or 6.7 out of 1,000, children has some form of ASD. The agency said it is unclear whether the increase is due to changes in how autism is identified or if there is an actual increase, according to its Web site.

No one knows what causes autism, although some theories blame vaccines, genetics or environmental factors. They tend to occur in people with other medical conditions or in children whose mothers took thalidomide during their pregnancy, according to the CDC.

Under the federal Individuals with Disabilities Education Act, school districts are required to look at a student's needs and provide an education that addresses those needs, Craveiro said.

Teachers, specialists and parents work together to determine a plan for the child's educational goals and how to reach them, known as an individualized education plan.

Colin's is 25 pages long.

For instance, his plan involves having an educational aide who works in his classroom and a speech therapist, provided by the school district, who works with him three times each week.

The goal is to get special needs students into regular education classes as much as possible, Craveiro said.

How Bend-La Pine schools are coping

On behalf of the school districts, the ESD provides autism specialists who work in schools throughout Central Oregon to determine whether students are eligible for special education due to autism, said Paul Andrews, the director of special programs for the High Desert ESD.

Carol Cooley-Reid, an autism specialist and consultant who serves the Bend-La Pine and Redmond school districts for the ESD, said she is so busy traveling between schools that making autism diagnoses is her primary function. Six full-time and two part-time specialists divide seven counties among them.

In the ESD's service area, there were 163 autistic students in 2001. In 2006, there were 227 children with ASD, Andrews said. That's a 39 percent increase in five years.

"We are attempting to get more staff, because of course there's an increase in students," Cooley-Reid said. "All the schools want us there all the time."

Kennedy of Stepping Stones School has a staff of six, including herself, and together they are currently teaching 15 children at her school. Ideally, there would be one teacher per student. Since the program began in 1999, "I have never not ended up full," she said.

While Stepping Stones was designed to serve children one on one, the ESD is required by law to service all children whose parents apply. That means Kennedy must adjust the weekly schedule so that some students come only two days a week and some come only three days a week.

Continued from previous page

“I believe that I could service more children if I had additional staff,” Kennedy said. “Right now, my hands are tied to take any more children ... There are basically no resources to hire another staff person should a student arrive on my doorstep who has the diagnosis and would benefit from the strategies that we use.”

Kennedy puts on a fundraiser each year to pay for new equipment to use in her classroom, but in the past two years, the money raised has gone toward hiring an additional staff person, she said. At High Lakes Elementary School, Colin’s teacher, Gaile Pascua, said she has “most definitely” noticed more autistic children over the years. She has worked with his mother to make sure his needs are met every day.

Because Colin cannot specifically articulate what happens at school, Pascua fills out a form that tells his mother how his day went. One day several weeks ago, for example, O’Connor found out that Colin changed his pants because he spilled something on the pair he was wearing.

“Some of my kids were not able to read, so we had to use all pictures, some were not able to talk,” she said. “So I have to find ways to make it work for them. Once I establish a way to teach them, then they got used to that, then it was easier to work with.”

The school district has been getting some increased funds from the state and federal government, but it is not enough to keep pace with the costs of hiring additional staff as well as providing for increases in salaries, health benefits and retirement benefits, Craveiro said.

Bend-La Pine has gotten about $1.9 million more in state funding and $1.3 million more in federal funding to serve special education students since 2001, according to information supplied by Henry, the fiscal services director.

What that means for the school district is that it is unable to add new programs or additional resources to deal with more autistic students, Craveiro said.

“We have to absorb those costs from the general fund,” she said. “That means I’m working harder, we’re all working harder at training our staff on autism, making sure that people understand that disability.”

How families are coping

Colin has the benefit of an educational aide all day long in his classroom, which his mother said happened only after a lot of back and forth with the school district.

Any time she asks for something, she said she must provide substantial proof that it will benefit her son. The O’Connors, Colin’s teachers and the school staff work together to determine how an addition to his education plan will help. Every decision they make is backed by loads of paperwork. O’Connor has file cabinets full of documentation from the school district.

“I never thought I needed an MBA to get my child educated, but you do,” she said with a wry smile.

Craveiro said one-on-one aides are only provided if a child truly needs them.

“I would never want to feel that we were unnecessarily or unwisely distributing resources based on the child’s needs,” she said. “It may not be the Cadillac version, but it is appropriate.”

Still, O’Connor insists that it is only through her frequent and forceful intervention that they have found a structure that works.

“For parents that are not really tenacious, their kids don’t get the services they need,” she said.

In addition to his aide, the school also provides Colin with a speech therapist three times a week to help him with basic socializing. O’Connor purchased the $75 textbook that Colin and his therapist use. And the therapist is unfamiliar with autistic children, she said.

Lynda Albers also has taken her child’s education into her own hands.

Her son, Robert, 15, has Asperger syndrome, a high-functioning form of autism. The disorder is often characterized by difficulty with social interaction, such as reading nonverbal cues, and occasionally an exceptional talent or skill, according to OASIS, or Online Asperger Syndrome Information & Support.

One day at school, a teacher raised her voice at Robert to take off his hat.

He does not respond well to yelling and reacted by screaming a list of obscenities, Lynda Albers said.

“An Asperger kid can function in the real world,” she said. “It’s really (an) embarrassment that’s going to set these kids off.”

Robert’s repeated troubles in school, which his mom blames on a lack of understanding, led to him withdrawing from school earlier this year.

“I worry about parents trusting the school system and not knowing what the laws are and their kids getting in a lot of trouble versus getting the correct services,” Lynda Albers said. “If they’re misidentified, they become problem children. They’re really not problem children, they’re just mis-identified.”

Craveiro, Bend-La Pine’s special programs director, could not discuss the case because she said the school district is bound by confidentiality laws.

Craveiro acknowledged that the district’s budget is tight, but she said they do a good job with what they have.

“It’s hard to add on additional staff and program developments,” she said. “What that means is we need to readjust our priorities, refocus our energies so we’re keeping up with the needs. And we are good at doing that.”

Parents still wish there were more resources accessible to them.

“I think there needs to be more in this community that’s specifically geared toward helping the parents,” O’Connor said. “It’s such a 24/7, 365 disability that impacts the family. If you empower the family to help teach the child, that’s less that the school has to do.”

Albers agreed.

“There’s not a whole lot of support here for parents,” she said.

The challenge of autism

Treatment demands long hours of work for children, parents

By Haley Murray
Thursday, May 3, 2007 10:33 AM CDT

Two-year-old Jace Burgett loves to be tickled. He craves hugs from his mom, Cara Burgett, and he despises sharing with his little brother, Elliot.

So Jace is not that different from any other toddler his age in many ways. How he is different is that he has a full-time job that entails hours of physical and mental activity - a job with inflexible hours and no vacation time.

In between the hugs, tickles and other standard two-year-old activity, Jace receives four hours of speech therapy a week, two hours of occupational therapy a week, and up to 25 hours of applied behavioral analysis therapy per week. Add all that up and this tiny toddler works a full-time job without pay.

But for Jace, this kind of lifestyle is crucial. What may seem rigorous and unnecessary to parents of normally developing children is key to ensuring Jace reaches his full potential.

The extent of his developmental capacity will not be known for several years, but his parents, Cara and Tony Burgett, are making sure he gets there. Such is the complex nature of Autism Spectrum Disorder. Jace was diagnosed with autism six months ago, just before he turned two. Because autism has a wide range of severity, it is unclear whether he will fall on the high-functioning end of the spectrum, the low-functioning end, or somewhere in between.

Only time will tell.

Autism is a complex developmental disability that typically appears during the first three years of life, according to the Autism Society of America, and impacts the normal development of the brain in the areas of social interaction and communication skills.

Although Cara and her husband were devastated by the diagnosis, and even hoped it might be wrong, they proceeded to do the research and follow through with recommended therapies, making their first appointment immediately.

"As much as we wanted to deny it, in our hearts we knew," Cara said from her family's Fairview Heights home. "We took the approach that this is precious time, and we've seen (from research) that early intervention is key."

Evidence shows that early intervention increases dramatically the positive outcomes for young children with autism, the Autism Society reports. Various therapies are recommended, including speech and language, occupational, physical, music, art sensory integration, and dietary interventions, among numerous others.

"Some of these kids go through more work than we do," said occupational therapist Kim David, who works with small children with autism, including Jace. "They are on these intense programs ... it's a whole change of lifestyle for a family."

Cara first noticed that something was amiss with Jace when he began to lose the language he had acquired at about 19 months of age.

"The first thing we noticed was that the word 'please' kept getting distorted to where it was soon just a 'puh'," she said. "He eventually lost all the words together, any word at all, except for 'up.' That was the only word he ever retained."

The lack of social interaction was something Cara only noticed after learning that it was a characteristic of autism. She would often take Jace to the park and observed that he never partook in the games children his age were playing. Instead, he walked the outline of the park or wandered along the fence.

"At the time we wondered what was going on," Cara said. "That didn't ring the autism bell for me."

Although lack of social interaction and the ability to verbally communicate are, in a sense, stereotypical of autism, there is no standard "type" or "typical" person with autism, said Sandra Rodenberg, Educational Services director at the Illinois Center for Autism in Fairview Heights.

"Autism encompasses a large group that go from all the way from individuals with severe or profound mental retardation, to individuals who are normally developing intellectually, but have the social and communication difficulties," said Rodenberg.

The Illinois Center for Autism has 143 students, Rodenberg said, and to say that all 143 students are alike is absolutely not true.

Consequently, working with children with autism poses a unique challenge to the professionals, and parents, who work with them. In addition, there is no real known cause of autism, though there are several theories floating around.

The Autism Society reported that current research ties autism to biological or neurological differences in the brain, and although no genetic link has been identified, there appears to be a pattern of autism or related disabilities in many families who have children with autism.

Autism is not, however, a mental illness, the society stressed, and children with autism are not unruly children who choose not to behave.

"Individuals with autism are not kids who decide just not to behave," Rodenberg reiterated. "These are kids with poor impulse control who become very frustrated when they are unable to communicate their needs."

Adding to their communicative frustration, children with autism also do not process sensory information as a normal child would, David said. As a result, the child will "do something," like hand flapping, rocking or even experiencing a total meltdown, to essentially readjust his nervous system to the environmental stimulant, which can range from the harsh florescent lights of a grocery store or the intense buzzing of an air conditioner.

"I work with kiddos to appropriately integrate and process the sensory information they experience everyday," David said. "It really decreases their ability to function because they are unable to deal with their senses."

Cara said she often feels ostracized when doing what would be considered normal activities for a mother and her young son, like going to the grocery store or running errands.

"One time we were in a store, and he had some real issues with the florescent lights," Cara said. "We ended up having to leave."

Jace has some stereotypical movements, like hand flapping, which can draw some odd looks from passersby, Cara said. It's hard to ignore those stares sometimes, she said.

"You say you don't care, but it still hurts when people stare," she said.

David, who works with five children with autism on a weekly basis, said the remark she hears most often from parents include the need for community awareness and understanding, as they often deal with comments about "controlling their children," she said.

"Don't be so quick to judge," David said. "There is just too much comparison. My heart really goes out to these patients."

Autism is a developmental disorder, but it doesn't have to be a devastating diagnosis, particularly if family, friends and the community rally around the issue and work to create an awareness, professionals said.

"These children are far from unintelligent," said Rodenberg, who has been working with children with autism for 10 years. "They just see the world far differently than we do."

With the recent discovery that autism now affects one in 150 children, as opposed to the previous one in 166, a person with autism is bound to touch a person's life in some manner.

In Illinois, the number of children receiving special education with autism as a primary diagnosis has grown from 1,960 to 9,455 in just 10 years. Whether society wants to acknowledge it or not, experts agree that autism is becoming more prevalent, though it is unclear why.

"Autism knows no social, economic or racial boundaries," Rodenberg said. "If we continue to educate all of the people that touch the lives of these children, I think the future holds great things."

Doctors look for early autism signs

By LINDSEY TANNER, AP Medical WriterMon May 14, 4:37 PM ET

Within days of their birth, healthy babies will look you in the eye. By 4 months, they will delight in others. And by 9 months, they will exchange smiles. Jacob Day did none of those things.

"We used to say it was like it burned his eyes to look at you," said his mother, Tamie Day of Antelope, Calif. "It was like a physically painful thing for him. It wasn't just that he wasn't looking at us; he was purposefully looking away."

Day, who has a psychology degree, suspected her son might have autism. She enrolled him in a study, published in April, that found that babies like Jacob are indeed at high risk for autism if they do not respond to their names by 12 months of age.

At 18 months, he was formally diagnosed with autism, about a year earlier than usual. Before he turned 2, Jacob began daily intensive behavior treatment designed to help him lead a more normal life.

He is part of a growing field in psychiatry called infant mental health. Doctors and scientists are increasingly looking for early signs in babies of autism, attention deficit disorder and other mental problems that just a generation ago, scarcely anyone thought could appear in children so young.

Some scientists even believe that intensive treatment in some susceptible babies can actually prevent autism, attention deficit disorder and other problems.

An influential Institute of Medicine report in 2000 helped energize this idea. The report emphasized the plasticity of babies' brains. It also explained how interacting with babies can change their brain wiring.

"We used to say `nature versus nurture,' but now people really think it's 'nature through nurture,'" said the University of Chicago's Dr. Lawrence Gray.

Tamie Day noticed the first ominous clue the night she and her husband, Chris, brought Jacob home after his birth.

"We walked in the door and he wouldn't stop looking at our ceiling fan," she said. "The next day, that's all he would look at."

Babies typically begin making eye contact soon after birth, and "understand at a basic, perhaps hardwired level, that eyes are special — they look more at eyes than at other parts of the face," said Sally Ozonoff, an autism specialist at the University of California at Davis' MIND Institute.

When his mother expressed her autism concerns at Jacob's 6-month checkup, the doctor said "we were being a little overzealous," Day said.

Still, there was no pointing, no clapping, no shared smiles, and when Jacob would laugh, it seemed like his own private joke. So his parents sought out UC-Davis specialists, who gave them the heartbreaking diagnosis.

Jacob, now 3 1/2, has made meaningful progress thanks to treatment, his mother said, including a breakthrough moment at age 2. It still makes her cry to recall it.

She was giving Jacob a bath, playing the "itsy bitsy spider" finger game, when he looked up and really gazed into her eyes. "He was smiling up at me and I realized that was the first time he had done that," she said. "He has gorgeous blue eyes, and I was like, `My God, your eyes are so beautiful.'"

Interest in infant mental health has been boosted by awareness of the prevalence of attention deficit disorders and autism, which government officials said in February affects 1 in 150 U.S. children and may be more common than previously thought.

In April, researchers from the federal Centers for Disease Control and Prevention and the Interdisciplinary Council on Developmental and Learning Disorders presented a report emphasizing earlier diagnosis and treatment.

The report said that about 17 percent of U.S. children have a developmental disability such as autism, mental retardation and attention deficit-hyperactivity disorder, but that fewer than half are diagnosed before starting school.

The authors say warning signs include failure to:

_focus on sights and sounds by 2 months.

_initiate joyful behavior with parents by 4 months.

_exchange smiles and sounds with parents by 8 to 9 months.

_take a parent's hand to find a toy and point to objects by 12 to 16 months.

Last year, the American Academy of Pediatrics recommended that pediatricians routinely evaluate children for developmental problems such as autism starting in infancy, and begin testing at age 9 months.

"Waiting until a young child misses a major milestone such as walking or talking may result in late rather than early recognition ... depriving the child and family of the benefits of early identification and intervention," the academy said.

Some critics worry that the trend will trigger needless diagnoses in children with normal variations in behavior.

Dr. Michael Fitzpatrick, a London physician, said that while early recognition and treatment of true disorders are important, "the extension of these categories to include 20 to 30 percent of all children reflects a social trend of pathologizing and medicalizing children's lives, which seems to reflect difficulties of parents and teachers in dealing with familiar problems of childhood development."

Dr. Stanley Greenspan, a psychiatry professor at George Washington University who co-authored the CDC-Interdisciplinary group report, said the idea is not to slap a label on babies and give them medication. Greenspan said the goal is to raise awareness about early warning signs and to encourage treatment to increase the chances that children can develop normally.

Research on identifying early clues and testing treatments is booming. For example:

_Dr. Fred Volkmar at Yale University is studying potential ways to diagnose autism in the first months of life, including whether looking at objects rather than people is a sign. "I think we're on the verge of being able to do a much better job" of diagnosing autism in infancy, Volkmar said.

_Researcher Stephen Porges at the University of Illinois at Chicago is starting a five-year study of whether excessive crying past 6 months of age might be an early sign of autism, attention deficit or other behavior problems.

_Greenspan is launching a multimillion-dollar study involving parents and babies at risk for autism or attention deficit disorder. One group will receive intensive behavior training, the other will not; both will be compared through age 5.

While rigorous scientific evidence is needed to prove that early intervention succeeds, Greenspan said his work with patients has shown promise.

Jacob didn't say his first word, "more," until he was in treatment and almost 2 — about a year later than normal. He didn't say "mama" until he was 3.

He gets 33 hours of weekly home treatment with trained college students, including six hours most days. The tab is $70,000 yearly, paid for by California, one of the few states that pay, through state and federal funds, for early intensive autism treatment.

Jacob's sessions involve lots of repetition, and rewards, including praise and treats, for a job well done. For example, to improve eye contact, teachers bounce him on a favorite giant ball, then stop. If he turns to look at them, he gets praise, maybe a piece of candy, and more bouncing.

To teach language, they use activities like swinging that get him excited enough to make sounds, then offer rewards for sounds like vowels or consonants rather than humming. Then they name objects, encourage mimicking, and offer more rewards.

Now he knows the alphabet, understands commands like "Bring me the cow and the horse toy," and can say simple sentences like "I want juice," his mother said.

"We definitely hope to mainstream him. We hope that he will have a job and have a life where he can take care of himself and be happy," Day said. "Everyone has given us reason to believe that's not an outlandish expectation."

UCLA Imaging Study Provides Clues About Inability To Imitate And Empathize In Autistic Children

10 May 2007


New imaging research at UCLA shows that impairments in autistic children's ability to imitate and empathize can be linked to dysfunction in the brain's mirror-neuron system.


In research presented at the annual International Meeting for Autism Research in Seattle, UCLA scientists demonstrated a clear link between a child's inability to imitate expressions on the faces of other people and a lack of activity in the mirror-neuron system (MNS).


Mirror neurons fire when an individual performs an action with a goal in mind. They also fire when one watches another individual perform that same action. Neuroscientists believe this "mirroring" is the neural mechanism by which the actions, intentions and emotions of other people can be automatically understood.


Individuals with autism can't rely on this system to read the minds of other people. Symptoms of autism include varying levels of difficulty with social interaction, including verbal and nonverbal communication, imitation, and empathy. These findings bolster the growing body of evidence that points to a breakdown of the MNS as the mechanism behind these symptoms.


"These results support the notion that a dysfunctional mirror-neuron system may underlie the impairments in imitation and in empathizing with other people's emotions typically seen in autism," said Mirella Dapretto, associate professor of psychiatry and biobehavioral sciences at the Semel Institute for Neuroscience and Human Behavior at UCLA and the David Geffen School of Medicine at UCLA. Dapretto and Stephany Cox, a research assistant in Dapretto's lab, are the lead authors of the study. "Together with other recent data, our results provide further support for a mirror-neuron theory of autism."


To measure mirror-neuron activity, the research used functional magnetic resonance imaging (fMRI) in 12 high-functioning children with autism as they viewed and imitated faces depicting several emotional expressions, such as anger, fear, happiness or sadness. Prior to the fMRI experiment, the children's imitative behavior was measured using scores from the Autism Diagnostic Interview (ADI-Revised), an instrument widely used to assess symptoms of autism. Children's empathic behavior was assessed using a child-modified version of the Interpersonal Reactivity Index (IRI), a previously validated scale that assesses four distinct facets of empathy.


The researchers found that, as expected, the level of brain activity in "mirroring" areas was related to the children's tendency to spontaneously imitate others, as well as to empathize with them. Specifically, significant negative correlations were found between symptom severity on the imitation items of the ADI-R and activity in the mirror area located in the brain's right inferior frontal gyrus. Additionally, significant positive correlations were observed between children's total scores on the empathy scale and activity within this mirror area and two other key regions in the brain involved in emotional understanding and empathy, the insula and amygdala.


"Simply put," said Cox, "the more the children tended to spontaneously imitate social behaviors or to empathize with the plight of others, the more brain activity we saw in the frontal component of the mirror-neuron system in the right inferior frontal gyrus. Conversely, the greater their impairments in these domains, the less activity we saw in this mirroring brain region.


"Importantly, these results indicate that abnormalities in the mirror-neuron system may negatively affect imitative behavior," she said. "In turn, this may lead to a cascade of negative consequences for the development of key aspects of social cognition and behavior in children with autism."

Dog Helps 9 Year Old With Autism

May 8, 2007 05:44 AM

(CINCINNATI) -- No doctor can say what causes autism or knows a cure. Research now shows one in 150 children have it. And families are learning to cope, sometimes in a unique way.

FOX19's Meghan Mongillo introduces us to a Montgomery family who's enlisted the help of a different breed.

We introduced you to 9-year-old Sam Leach last August.

A computer device helps him communicate and an alarm system makes sure he doesn't slip away. But now his mom Carol is trying something new.

"Excuse us.."

John Boy is Sam's service dog.

The black lab is trained to follow the direction of his front collar which Carol controls and ignore the leash on his back which Sam grabs onto.

"I've never known anything to work as well for Sam to be as happy about it," says carol. He really likes walking with the dog it seems to calm him down

The family's had the dog for a month now and Carol, Sam and John Boy are all learning how to work together.

"Get a hold of John Boy..no..there we go.."

Carol says the occasional wrong move is nothing compared to her grocery store trips before.

"Once we'd go past the cereal aisle he'd make a mad dash back to it 2 or 3 times it was like being an octopus."

"So why does it work. Why does sam react so well to John Boy? To get some answers we came here to Cincinnati Children's Hospital."

Dr. Patricia Manning specializes in developmental pediatrics. She gave us some insight on what a child like Sam may be thinking.

"The dog's not talking or giving me a directive it's just moving and I'm moving with the dog verses I have to interpret verbal directives and decide if I want to comply. It's an innate response some kids react to animals presence and pressure vs. Our human voice and communication."

Dr. Manning warns that not every child with autism will benefit from a service dog.

Getting one is expensive - with training it costs 15 to 26 thousand dollars - and there's no guarantee it'll work.

But for the Leach family..it was worth it - John Boy can even track Sam's scent if he ever wanders off.

Fluency new world in autism education

Wednesday, May 09, 2007

Teachers, therapists and parents of children with autism and other developmental disabilities spend countless hours educating their children. They focus on teaching language, social and independence skills. Not only do they want their children to learn new skills during instructional sessions, but they also want them to be able to retain these skills and "generalize" them, or use them in all appropriate situations, in a natural way. In other words, they want their children to become "fluent" in the new skills.

Fluency is a relatively new term in the education of children with autism, and more and more educators are incorporating fluency-promoting practices into their teaching. According to Dr. Carl Binder, a fluency expert from Washington State, fluency means the child can perform a skill quickly, smoothly, fluidly, confidently, competently, capably, automatically, without thinking and without hesitation.

More specifically, fluency is performing the skill accurately. We typically set a mastery goal for a child to perform a skill at a certain level of accuracy, usually as a percentage of opportunities. For example, a mastery goal might be identifying pictures of common objects with 80 percent accuracy for all pictures presented during each teaching session.

Speed (also known as rate) of performance is another important aspect of mastery. Thus, in the above example, we would also be looking for the child to identify the pictures quickly, such as by pointing to the correct picture at a rate of 20 times per minute. Consider the difference in mastery between a child who can identify 20 pictures per minute and a child who can identify pictures at a rate of one per minute. We might say that the first child is "fluent" in identifying pictures.

Experts in promoting fluency have identified four primary considerations:

First, the target skill must be chosen. It is always best to focus on a specific skill that is observable and distinct from other skills. Often, we choose to work on one component or step of a larger, more complex skill, such as sounding out part of a word rather than the entire word.

Second, teach the skill to a high level of accuracy. A number of instructional procedures can be used, including discrete trial training and natural environment training, and by using positive reinforcement, prompting and the fading of prompts. When we are focused on accuracy, time is not limited and speed of response is not the priority.

Third, select a target speed of performance to indicate fluent mastery. The target needs to be individualized for each child and for each skill. Teachers should pick an accuracy level and a speed level that would likely result in the child being fluent in the skill.

Typically, we choose a short period of time to assess fluent mastery, such as a per-minute or per-five-minute period. Instruction to improve speed of responding may start with requiring an initial speed and then increasing the requirement before positive reinforcement is given.

Many short instructional and practice sessions appear to be more successful in maintaining the child's attention and performance than longer sessions.

Fourth, teach the child to combine the components to enable larger, complex skill mastery to occur.

Fluent mastery of skills is the outcome we desire in our teaching. Focusing on speed and rate of performance can help ensure this outcome. Successful athletes, actors, surgeons and speakers of a second language are good examples of individuals who have learned new skills to a high level of fluency.

A skill learned fluently will likely be retained and will likely occur in other settings and with other people. Once we learn to do something well, we enjoy it more and engage in it more often. The same is likely true for our children with autism and other developmental disabilities. To further explore this topic, visit www.autismteachingtools.com and www.binder-riha.com Alan Harchik, Ph.D., is senior vice president of the May Institute, which operates schools for children and adolescents with autism and other developmental disabilities in Arlington, Braintree, Chatham and West Springfield. The institute is sponsoring the development of the National Autism Center, a new nonprofit organization dedicated to supporting effective, evidence-based treatment approaches for children with autism. Contact the institute at (800) 778-7601 or on the Web at www.may institute.org

Autism school opening in Warren

By CELANIE POLANICK

Staff Writer

WARREN -- Main Street can be a very strange place to the growing number of New Jersey children diagnosed with autism.

Now, a new year-round school for children with autism -- created to meet the growing demand in Central Jersey -- combines academic skills with an education in daily life on its own indoor "Main Street," complete with a grocery store, bank, barber shop and apartment.

The Warren Developmental Learning Center, run by the Morris-Union Jointure Commission, will open to students June 27. At a grand opening ceremony and open house Tuesday of the facility on King George and Mountain View roads, parents, educators and sponsors came face to face with the center's offerings, including Main Street, two pools, classrooms, a gymnasium and green design elements such as geothermal heating, an environmentally conscious layout, energy-efficient lighting and more.

"I can't believe it -- this place is incredible," said Roberta Polak of Budd Lake in Morris County, who came with her husband, Bill, to check out the place where their son, Will, 6, will begin school this summer.

The family has been searching for a school for Will since October 2006, but most autism-friendly schools in the area -- public and private -- are at capacity. Will's 45-minute commute to the center is preferable to the alternatives, and at the new facility, he'll learn things that will make the whole family's life better, his mother said.

"It's so hard to take him to regular stores -- you never know whether he's going to have a good day or a bad day," she said. Now, he'll get practice -- and that could help a lot, she said.

Benjamin Ferry, 8, of Fanwood, who starts school June 27, said of the school, "It's great!"

At the opening ceremony, Benjamin sang "Side by Side" with Patrick Gillison, 7, of East Orange, who attends the commission's Union Township school.

At the ceremony, Kim Coleman, the commission's superintendent, presented Champion for Autism awards to Helen Hoens, a New Jersey Supreme Court Justice whose son, Charles, now 22, is autistic; Deirdre Imus of the Deirdre Imus Environmental Center for Pediatric Oncology (accepted by managing director Bonnie Eskenazi); Vernon Hill, chairman of the board and president of Commerce Bank; and his wife, Shirley Hill, of InterArch, the firm that designed the small Commerce Bank inside the school.

The Morris-Union Jointure Commission serves 28 school districts in Somerset, Hunterdon, Union, Morris and Essex counties. Its primary role is to provide school programming for more than 300 children with autism in Central and North Jersey.

The commission has other schools in Kenilworth, New Providence and Union Township but started the Warren school in part because of a capacity issue. Many students were coming from Berkeley Heights and westward, so the commission needed a facility in Somerset County, Coleman said earlier this month.

The 167,000-square-foot, $41.4 million facility sits on 18.7 acres at 217 Mountain View Road and will offer daytime education, applied behavior analysis and activities to more than 100 students in June for the summer session of its year-round programming. The school has the capacity to serve about twice that many, said Janet Parmelee, assistant superintendent of the commission.

The school will be separated by a combination of age and ability level into ages 3 to 7, 8 to 12, and 13 to 21.

The school's miniature Main Street contains smaller, fully operational versions of area businesses, donated by the business owners themselves -- a Commerce Bank with a working ATM, a hardware store built by Warrenville Hardware and Berkeley Heights Hardware, a barber shop and salon sponsored by Carmen's, a hair salon in New Providence; a small diner that will serve as the cafeteria; a convenience-store-sized Shop-Rite; and a plant nursery.

Main Street also contains an "apartment" where students can learn daily chores such as cooking, doing laundry and making the bed.

The school's base tuition is more than $67,000, including speech therapy, occupational therapy and adapted physical education for about 37 hours per week, 42 weeks per year. Tuition is paid by sending school districts, and the school receives no direct federal or state aid -- in other words, if people want their children to attend, they have to discuss it with their local Board of Education.

The education they will receive at the center is unlike programs anywhere else, said Principal Barbara Starling, who is leaving her post as one of the administrators at the Union school to come to Warren.

"This is a more natural education that replicates the community environment," she said. "It's a much more effective way to teach them in the context of eating, the cafeteria, the apartment. ... We can work on leisure skills, daily living skills and academics simultaneously and in a lot of different settings."

Celanie Polanick can be reached at (908) 707-3137 or at cpolanick@c-n.com.

Autism rates rise, but so do hopes

CHILDREN AT RISK

Autism rates rise, but so do hopes

Schools reach out with innovative treatment plans

May 6, 2007

BY PEGGY WALSH-SARNECKI

FREE PRESS EDUCATION WRITER

Ben Auten grabbed a bumpy rubber pillow as he walked into his classroom in Montfort Elementary School in Shelby Township and, with a well-practiced motion, pushed it under himself as he sat down.

An 8-year-old with autism, Ben understood that the hard bumps on the pillow would give him the extra stimulation his body craved to focus on his classes. When it was time to leave his special-ed classroom for his regular classroom, he took the pillow with him.

On this day, the bumpy pillow helped. Other days, Ben might squeeze a squishy ball or listen to music to stay focused.

The number of children diagnosed with autism is growing dramatically across the nation -- one in 150, compared with one in 1,500 just five years ago, according to a February study by the federal Centers for Disease Control and Prevention. School caseloads in Wayne, Macomb and Oakland counties have roughly doubled in the same time span.

Nobody knows what causes autism, a neurological disorder affecting a person's senses and ability to communicate and socialize. Theories -- none proven -- about why the numbers are growing range from better awareness of the disorder to changes in the environment.

The increase in autism cases is creating challenges for public schools across metro Detroit that are charged with providing a free education to all children, even if that means they have to treat a disability before a child can learn. Because insurance companies rarely cover costly therapies and programs for children with autism, the schools are often their only source of treatment.

And the schools are searching for new approaches to reach them.

"This is not a disability identification that has a lot of outside agencies, even doctors, who have the wherewithal to address it," said James Boogren, associate director of the Burger Development Center in Garden City Public Schools, the largest center for children with autism in the Midwest.

Focusing on socialization

Wayne County school districts have put tens of millions of dollars into Burger, which has 330 students ranging in age from 3 to 26 with various levels of impairment -- from students who can't walk or talk to those who can spend part of each day in a regular classroom. The school accepts students from all over Wayne County, with each student's home district paying their way.

Classes at Burger have no more than five students with a teacher and a teacher's aide. The large number of students with autism, along with an annual budget of $17.7 million, allows students to be grouped by age and abilities, Boogren said.

Burger's classrooms look like quirky living rooms. There are desks and bulletin boards, but there are also curtains, dozens of pictures on the walls and windows, and decorations hanging from the ceiling that pertain to the lessons. At the same time, the lights are dimmed and bells are softened to keep the students from being overstimulated.

Introducing themselves to a stranger is clearly an effort for many of the students. One tall, willowy girl refused to say hello or even look up at a newcomer in the room. It's a typical autistic response, and that inability to interact would get in the way of learning in a regular classroom, teachers say.

Burger's small student-to-teacher ratio allows teachers to tap into each student's unique abilities and learning style, whatever their method of communication.

Along with the academics, routine social scenes are part of each day's lessons. Older students spend part of the day in kitchens and living rooms to help them learn the most basic life skills.

"Even though this is not something that is going to go away in their life, we can certainly improve the quality of their life," Boogren said.

Starting with kindergartners

Many parents of mildly autistic children, however, push to have their children included in regular classrooms, instead of a center such as Burger.

"Their disability is all about language, communication, motivation and behavior. These students often need to be in a general education classroom, but because their needs are so visible, they're not always given that opportunity to be in general education," said Mark Larson, an assistant professor in the Wayne State University College of Education.

Ben's parents consider themselves lucky that their school district, Utica Community Schools, is developing a creative alternative program for mildly autistic students.

"The concern we had is we were going to end up in an environment with severely autistic children," said Ben's father, Robert Auten of Shelby Township. "He needs to be challenged by kids who are not autistic. In the other environment, he would have been the high-functioning child and he would have been working down at the other kids' level."

Ben is in the CORE program -- Children Organizing Resources Effectively -- a 2-year-old pilot program aimed at getting mildly autistic kindergarten- through second-grade children into regular education classrooms.

CORE students come to a special classroom four times daily to talk about problems and to work on their social skills with a full-time teacher, plus a part-time social worker, therapist and psychologist. The rest of the time, they are in a regular classroom.

Words and phrases such as "share," "play nice," "take turns" and "nice smile" are found on walls and tables everywhere in the CORE classroom. The students practice social situations, talking to each other, making eye contact and reading from scripts of friendly questions and small talk designed to replicate a casual conversation.

The program is less expensive than giving each child a full-time aide, the traditional way of helping mildly autistic students in regular classrooms, said Pat McKinnon, executive director of special-education services for Utica schools. And the children learn to deal with their autism independently, instead of becoming aide-dependent.

Families take action

While public schools are the main provider of resources and treatment for children with autism, there is no consistency in the availability or quality of programs from one district to the next because Michigan does not mandate what schools should do for these children, Larson said.

In 2005-06, Michigan's public schools spent $93.5 million on programs just for children with autism. That money is on top of what the schools pay special-education teachers, psychologists, social workers and others who also deal with children with autism.

For parents who are not happy with their local district's offerings, the only alternative is making their way through a maze of costly programs and medical treatments.

Scott Novitsky of Walker considers himself one of the fortunate few. His insurance helps pay the small army of professionals treating his 4-year-old daughter, Maiya.

She has Rett syndrome, a severe form of autism. She does not speak, has gastrointestinal problems and has no control of her hands. She suffers from uncontrollable repetitive movements and uses a wheelchair.

"The insurance companies wanted to pawn everything off on the school system," Novitsky said.

His goal is to keep Maiya from regressing. If she makes gains, that's even better.

"We're going to just enjoy the time we have with her and keep her happy," he said. "And hopefully the cure will come."

Zachary Ottoy's family's insurance doesn't cover his autism needs, and the family's search for help beyond the schools has been costly. Zachary, 7, can't speak and needs a special vest to sit upright.

Zachary attends Rodgers Elementary in St. Clair Shores, which has a program for autistic children run by the Macomb Intermediate School District.

But the Clinton Township family also pays for a variety of private therapies. At Crawl, Walk, Jump, Run Therapy Clinic in Clinton Township, Zachary might on a given day spend time in a thera-suit, a type of harness that helps his therapists have more control over his movements. He also participates in gymnastics for his motor coordination at Cutting Edge Athletics gym in Clinton Township.

The Ottoys estimate that treatments for Zachary have cost them close to $200,000 when the loss of income for his mother, Ann Marie Ottoy, is included.

"Anything I don't pay for is coming through the public school system," she said. "But try as they might, it's woefully inadequate."

To Ann Marie Ottoy, there is no other choice.

"I keep thinking, 'What if we didn't try it, and it was the one that would have worked?' "

Children with Autism Have Difficulty Recognizing Ordinary Words

Young children with autism have a difficult time recognizing ordinary words such as ball, dog and cat and more of heir brains are occupied with this kind of task compared to typically developing youngsters, according to new research.

Newswise — New research indicates that young children with autism have a difficult time recognizing ordinary words and more of their brains are occupied with this kind of task compared to typically developing youngsters.

“Rather than becoming an expert in recognizing words, their brains slow down,” said Patricia Kuhl, co-director of the University of Washington’s Institute for Learning and Brain Sciences and an expert in how babies acquire language.

“Because these children can’t distinguish what should be a familiar word their brains work too hard and they are unable to focus on new words. When they can’t understand a word, they miss everything else that follows in a sentence.”

The research is part of an effort to understand why language disorders are a characteristic of children with autism as scientists begin to peer inside the brains of some of these children to understand what’s behind their language deficits.

Kuhl will present findings that compare 19-to 30-month-old typically developing and autistic children during a keynote address Friday (May 4) at the Sixth International Meeting for Autism Research in Seattle.

She and her colleagues placed caps fitted with 20 sensors on the heads of the children and recorded brain waves that “leaked through their scalp” as the babies listened to familiar words (ball, dog, cat, book) and words that would be unfamiliar (verb, pint, bide, rate). The children also were exposed to common words that were recorded and played backwards. Backwards words produce sound patterns that are not characteristic of any language.

The brains of typically developing infants responded with a unique pattern of activation for each of these types of words. The responses for known and unknown words were markedly different. With the backward words, the children’s brains reacted as if they were hearing something totally different from the other types of words and gave a different signal, according to Kuhl, who is a professor of speech and hearing sciences. In addition, brain activity was focused in the temporal lobes of both hemispheres of the brain for each word type.

The children with autism, however, showed no difference in their responses between known and unknown words, meaning they couldn’t differentiate between them. However, their brains did react to the backwards words, and the pattern of activity was somewhat similar to that of the typically developing children. Overall brain activity in the children with autism was more diffuse and not focused in the temporal lobes, indicating more of their brains were tied up trying to understand the words.

Earlier work by Kuhl showed dramatic differences in how children 32 to 52 months of age responded to a computer-generated warbling sound and “motherese,” or baby talk, a speech form that is rich in phonemes. When given a choice by letting them turn their heads in one direction versus the other, normally developing children consistently preferred to listen to motherese, a near universal form of baby talk that is directed at infants and young children. Children with autism preferred the warble sound and chose it consistently. Youngsters with the most serious symptoms of autism had a stronger preference for the warble than did higher functioning children with autism.

Kuhl believes there is some good news for parents from these studies because there are indications that some autistic children are achieving some learning.

“One of the puzzles of autism is the variability of children with it,” she said. “We believe the highest functioning autistic children have some recognition of phonemes (the basic sounds of a language). And this new study shows autistic toddlers can differentiate between backward words, which are not characteristic of a language, and real words. So some learning has gone on.”

“To crack the speech code children must be able to distinguish phonemes, understand known words and be able to decode the word order of a sentence in English or their native language.”

Kuhl said researchers need better measures and tools such as magnetoencephalography, which is a non-invasive technology, to test and look inside the brains of children with autism.

“We’d like to know what kind of knowledge these children may have locked up in their brains. Children at the high-functioning end of the autism spectrum may have quite a bit. The first possible use of this research would be as a predictor of which children with autism might be responsive to treatment. With these tools we may be able to identify a part of the brain that is not responding, and that may suggest treatments by developing more targeted interventions.”

The National Institute of Mental Health, the National Institute on Child Health and Human Development and the Cure Autism Now Foundation supported the research.

Newsweek -By studying the siblings of kids with autism, researchers hope to develop new methods for diagnosing the disorder. The mysteries of social

WEB EXCLUSIVE

By Anne Underwood

Newsweek

Updated: 2:38 p.m. ET May 4, 2007

May 4, 2007 - While many parents of children with autism want to know more about the possible role of environmental factors in the development of the condition, scientific studies show that perhaps as much as 90 percent of the risk comes from genes. Autism is highly heritable, an observation underscored by the fact that, among the younger siblings of kids with autism, roughly 10 percent will also develop the disorder. But what about the other 90 percent? "They're the ones that interest us," says Karen Dobkins, professor of psychology at the University of California, San Diego. Their quirky behavior is not enough to qualify for a diagnosis of autism, but "they still show atypical patterns of social interaction and communication," she says. What's going on in their brains? And can it yield any clues that might help lead to earlier diagnosis for those with the full-blown autism?

This week, Dobkins and her colleague Leslie Carver unveiled two joint studies at the International Meeting for Autism Research that, in different ways, help to chip away at those questions. In one of the studies, the pair looked at social behaviors; in the other, at sensory perceptions. But both are highly revealing.

The first of the studies examined a behavior known as "social referencing"—or the tendency to look to others to help read meaning into an unfamiliar event. Dobkins explains it this way. "Say, you've never flown in an airplane before and it starts bouncing around," she says. You're not sure if this means you've hit a rough patch or the plane is about to nosedive. "So you look around at your fellow passengers," she says. "If they're screaming, you think, 'This is bad. I have to start screaming, too'." This behavior is very common. Children usually begin doing it around 12 months of age, checking for mom's smile of approval before investigating a new caterpillar in the park, for example.

But in a study of 20 "high-risk" toddlers (18-month-old children with an autistic older sibling), Carver and Dobkins showed that the social-referencing behavior of these children was very different from that of a control group of 16 children the same age with no autism in the family. They put each child into a room with a parent, a researcher (who was a stranger) and a series of novel mechanical toys—a spider with eyes that light up and flash, a raccoon that pushes a ball around the room with its nose, and a dinosaur that walks in circles and beeps. Both groups stared intently at the toys for a good 30 seconds or so before looking up at the parent for cues as to how to interpret these puzzling creatures. But the children with no autism in the family looked at the stranger 2.5 times more often than the high-risk children did. Why? Carver speculates: "The high-risk toddlers might be comfortable with their moms, but less comfortable with a complete stranger."

Even more intriguing was their response to the cues from the adults. When the stranger registered delight or disgust or showed no particular emotion at all, the children in the control group responded accordingly, reacting more positively to a toy "tagged" with a positive emotion, more negatively to one that drew negative responses from the adult stranger. But the high-risk toddlers simply ignored the cues. "There was no match of emotions," says Carver. "Again, we think that one of the things in autism is being able to read emotions, know what they mean and apply them to social situations."

That's not all the study revealed. The toddlers all wore caps with tiny electrodes embedded in them to record brain waves—and those, too, showed differences. The control-group children had three different types of brain-wave responses, depending on the emotions the researcher displayed—positive, negative or neutral. But the high-risk children showed identical patterns of brain activity in response to all three. This is particularly interesting, says Carver, because these are not children that have been identified as quirky or problematic or anything but normal. Yet there are clearly differences there. "We often note that adult family members of kids with autism don't like big crowds or avoid parties or prefer to work with data than people," she says. None of these behaviors constitutes a diagnosis. "But it shows social inhibition"—and that may run in families.

At this stage, Carver and Dobkins are unable to interpret the data finely enough to predict which of these high-risk children will be in the unlucky 10 percent who develop autism. But the hope is that by continuing to follow these children out to an age where a diagnosis is possible, they will then be able to look back at the earlier data and see if certain characteristic patterns were indicators of trouble ahead. Currently, a child can be diagnosed by the age of 3—although many are not diagnosed until about 5. This line of inquiry could conceivably lead to the ability to diagnose children as early as 18 months.


There are other potential early clues beyond social referencing. In the second of the studies, Dobkins and Carver looked at responses to one type of sensory information—"low-level visual sensitivity," or the ability simply to detect contrast between light and dark. "Children with autism are often more sensitive to sensory stimuli," says Dobkins. "Noises are too loud. Things they touch feel weird. Visual stimuli are too great. We began thinking, maybe we can find traits that are simpler than social interaction and communication, but still closely tied to the genes underlying the disorder." These might be even easier to detect earlier.

Dobkins and Carver took 13 high-risk infants at 6 months of age and 26 control infants from families free of autism and showed them a split computer screen. One side of the screen was blank. The other showed a series of blurry stripes against a background providing low, medium or high contrast. Because babies prefer to look at an image rather than a blank screen, the experimenter would follow the child's gaze to determine the threshold at which he or she could begin to detect the emerging contrast levels. The high-risk infants were nearly twice as sensitive as control infants. Since the brain structures used for low-level visual perception feed into higher-level structures used for seeing and recognizing faces, these early, low-level perceptual differences may be indicative of changes that will come later in higher-level processing. The results, say Dobkins and Carver, are further evidence that "autism is a biological-developmental disorder" and that "to understand it, we will need to understand the development of the brain across time."

Ultimately, there is no single brain region that will tell the whole story, and other researchers at the conference are focusing on different areas. Mirella Dapretto of UCLA presented a study on the response of so-called "mirror neurons"—those brain cells that help you mimic another person's body movements and facial expressions and, in doing so, feel empathy by figuratively putting yourself in that person's shoes. Mirror neurons help explain why one crying toddler can set off others nearby, starting one loud, communal wail. Dapretto began with interviews and questionnaires to gauge how readily 12 children aged 9 to 16 with high-functioning autism imitated others and empathized with them. Using sophisticated brain imaging, she then measured activity in the mirror-neuron brain areas of these children as they looked at pictures of faces that were happy, sad, angry, fearful or neutral. Those with the lowest empathy scores also had the least activity in the mirror-neuron areas. That doesn't mean these children are helpless in social situations. Because they're high-functioning, Dapretto says, they have learned to distinguish different expressions—though they may do so through a series of deliberate calculations rather than the automatic way a normal child would. The interesting part is that the difference shows up as a different pattern of brain activity, even though the end result is the same—being able to recognize the expressions.

Taken together, says Carver, these studies show that "if you want a solid picture, you will need to look at the development of the whole brain and interaction between affected areas." When researchers are able to do that, they will be much closer to a full understanding of this tragic disorder.

Researchers learn more about genetic mutation linked to autism

University of Iowa researchers have learned more about a genetic mutation that contributes to autism. The mutation occurred in sperm cells of a father, who does not have autism, but passed the condition on to two of his children.

The investigators now know more about how the mutation causes problems with a specific gene and are testing for additional mutations of the same gene in other people with autism. Thomas Wassink, M.D., associate professor of psychiatry in the UI Carver College of Medicine, is presenting the findings May 3 at the annual International Meeting for Autism Research in Seattle.

Earlier this year, UI researchers and collaborators were part of an international team that identified, among other findings, deletions in a gene called neurexin 1, which caused the two cases of autism in one family. The UI researchers and collaborators were Wassink; Val Sheffield, M.D., Ph.D., UI professor of pediatrics and a Howard Hughes Medical Investigator; Kacie Meyer, a graduate student in Wassink's laboratory; and former UI investigator Joseph Piven, M.D., now professor of psychiatry at the University of North Carolina (UNC) and director of the UNC Neurodevelopmental Disorders Research Center,

"Genes with the most compelling evidence of causing autism appear to be components of a specific kind of neuronal connection, or synapse, called the glutamate synapse. The gene neurexin 1 was the fourth of these genes to be identified, and it is a scientifically interesting mutation because it wasn't found in either of the parents, who do not have autism," Wassink said.

Instead, the mutation is a germline mosaic -- meaning the deletion occurred only in the father's sperm cells when he himself was in gestation. As result, the father did not have autism, but his two children, both daughters, inherited from him a chromosome that was missing a small piece of DNA that contained neurexin 1. The daughters now have autism.

Because of this missing DNA, certain proteins cannot form that normally contribute to glutamate synapses and, by extension, normal development.

"Now, using this information, we can look in a very detailed way at this gene in other families and begin to understand what happens when this protein that is normally active in the brain is missing," Wassink said.

Knowing more about how the deletions function could eventually lead to the development of diagnostic and therapeutic tools.

Autism Researchers Report Key Genetic Finding

A team of international researchers, including a psychiatrist at University of Iowa Hospitals and Clinics in Iowa City, recently announced the publication of preliminary results from the largest genome scan ever conducted in autism research.

The research consortium discovered a previously unidentified region of chromosome 11, and neurexin 1, a member of a family of genes believed to be important in neuronal contact and communication. The neurexin finding highlights a special group of neurons, called glutamate neurons, and the genes affecting their development and function, suggesting they play a critical role in autism spectrum disorders. The research article appears in the journal Nature Genetics, one of the world's most prestigious scientific publications.

This research was performed by more than 120 scientists from over 50 institutions representing 19 nations who formed a first-of-its-kind autism genetics consortium, the Autism Genome Project (AGP). Thomas Wassink, M.D., associate professor in the UI Department of Psychiatry, and Val Sheffield, M.D., Ph.D., professor in the UI Department of Pediatrics and a specialist with Children's Hospital of Iowa, participated in the effort.

"This is exciting news because we have now narrowed the search area on the human genome. The neurexin finding, in particular, has emerged from contributions made by the Iowa autism research team, and we are spearheading the neurexin follow-up work. We thus have a much better idea about where to look for factors that might make a child susceptible to developing an autistic disorder," Wassink said. "Now we can move forward to more precisely pinpoint those genes, which may eventually help us develop better treatments for the disorder."

Autism Speaks, a nonprofit organization dedicated to increasing awareness of autism and raising money to fund autism research, and the National Institutes of Health, funded the genome scan in the first phase of the project.

Phase 2 of the project represents a $14.5 million investment over three years by Autism Speaks, the British Medical Research Council (MRC), the Health Research Board of Ireland (HRB), Genome Canada and partners, Canadian Institutes for Health Research (CIHR), Southwest Autism Research and Resource Center (SARRC), and the Hilibrand Foundation.

Building on their previous success, the researchers will now apply state-of-art "gene-chip" technologies to scan the genome for association with new genetic markers, as well as sub-microscopic copy number variations (CNVs) along chromosomes in autism.

Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and it is often accompanied by extreme behavioral challenges. Autism spectrum disorders are diagnosed in one in 166 children in the United States, affecting four times as many boys as girls. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention, treatments and cure for autism, and to advocating for the needs of affected families.

STORY SOURCE: Joint Office for Marketing and Communications, University of Iowa Health Care.

'Love Hormone' may emerge as autism treatment

By TOM PAULSON
P-I REPORTER

Scientists have found preliminary evidence that oxytocin, a brain chemical frequently dubbed the "love hormone" because of the critical role it plays both in sexual pleasure and giving birth, holds promise as a potential new treatment for autism.

"Those who received oxytocin seemed to do much better," said Evdokia Anagnostou, an autism researcher at Mount Sinai Medical Center in New York City.

While it is hardly implausible that a hormone involved in orgasm would have positive effects on anyone, these findings of improvement in adults with autism given oxytocin are based on measurable changes in behavior as well as visible changes in their brains as seen through functional magnetic resonance imaging.

"It's very preliminary data," cautioned Anagnostou, who spoke Thursday at the 6th International Meeting for Autism Research. The meeting, which has drawn about 900 scientists, physicians and others from around the world, is being held through Saturday at the Seattle Sheraton Hotel and Towers. It is not open to the public.

Previous studies have indicated that oxytocin, which also causes milk production in breastfeeding mothers, plays some role in how mammals manage fear, develop trust and establish socially cooperative behavior. Autism is a disorder in which, among other things, individuals have difficulty establishing social relationships.

Anagnostou and her colleagues at Mount Sinai, including group leader Eric Hollander, have been administering oxytocin intravenously and by a nasal mist to adults with autism spectrum disorders.

While the studies have been limited to a small number of people, she said those who received the hormone improved in their ability to identify emotions as described in writing to them and also reduced characteristic autistic repetitive behaviors. They maintained these observed improvements two weeks after exposure to oxytocin.

Brain imaging, Anagnostou said, also showed improvement in regions of the brain known to be involved in autism. The findings are very early, she said, but they may point to a possible new treatment for the disorder.

"It's promising, but we still need to do more study of this," Anagnostou said.

Also at the autism research meeting, University of Louisville neuroscientist Manuel Casanova spoke on how structural differences in the brain may help explain why some autistics suffer severe developmental disabilities while others -- though still suffering deficits -- demonstrate brilliance in mathematics, memorization or other manifestations of genius.

"It has to do with connectivity," Casanova said. He and some other scientists point to studies indicating that autism is basically the result of bad wiring in the brain. Though that doesn't get to the cause of what's making the brain go haywire, Casanova said an increasing body of evidence supports the theory.

At a news conference Thursday, he said that basic structural units of the brain's cortex known as "mini-columns" are overproduced and undersized in people with autism. That correlates, he noted, with the observation of hyperdevelopment of the brain in many children with autism disorders.

"In some cases, this eventually constrains development" Casanova said. Nerve fibers get pinched off, he said, and long-term connectivity in the brain is reduced. Short-term connections between nerves, however, are often enhanced. Where development ends up in the balance -- between the gain of many more cortical mini-columns and damage to long-term connectivity -- may make the difference between disability and genius savant, he said.

It appears that many people with autism develop "many more microprocessors than normal," Casanova said. Why this happens and where it may lead in terms of treatment or efforts to figure out the cause of autism, he said, is unknown.

"I believe it is the wiring of our brain, not so much any different portion of the brain, which makes us unique as a species," Casanova said. Studies of the wiring in autistic brains, he said, may lead to much better understanding of what it means to be human.

Eric Fombonne of Montreal Children's Hospital at McGill University also spoke at the news conference Thursday. Fombonne and his colleagues examined the hair and blood of autistic children for mercury and other heavy metals.

"There has been a scare about vaccines that contain mercury," he said. Fombonne explained that the evidence overwhelmingly indicates that trace mercury in vaccines is not harmful, but many parents are still concerned enough to justify continued examination of the possibility.

For the study, blood and hair samples were taken from more than 150 children -- half with autism and half not. The McGill scientists found no difference in the mercury levels between the two groups of children.

That, Fombonne said, is more evidence challenging the popular notion that vaccines cause autism. He noted that in Quebec, where the use of mercury-containing vaccines ended about a decade ago, there has been no decline in autism rates. Though some studies indicating some association between mercury and autism continue to be circulated, most other studies in credible scientific journals have failed to support the vaccine-autism link.

"It's clear there is no evidence of mercury poisoning in autism," Fombonne said

He added that some parents who don't believe the science are still subjecting their children to chelation therapy -- a chemical process by which heavy metals and minerals are removed from the body. That, he said, can be dangerous and sometimes even deadly.

"A child died as a result of chelation not too long ago," Fombonne said. It is important for parents to pay careful attention to the bulk of the scientific evidence, he said, and not potentially do harm to their children based simply on mistrust of the scientific establishment.

No link between mercury and autism

Thu May 3, 5:01 PM ET

Mercury levels have no relationship to the development of autism, a developmental disorder whose cause remains unclear, according to a Canadian study published Thursday.

"In recent years, hypotheses have been raised concerning a possible relationship between mercury exposure and autism," said Eric Fombonne, head researcher and director of pediatric psychiatry at the Montreal Children's Hospital.

"Specifically, the concerns have been related to childhood thimerosal-containing vaccines, dental amalgams, and methylmercury in food," he said in a statement.

The research team examined mercury levels in hair and blood samples provided by autistic children and their mothers and concluded that the levels observed did not differ largely from those taken from children without autism.

The study also "demonstrated that there was no correlation between the mercury level and the severity of symptoms and level of functioning of autistic children."

Children with autism, a growing developmental concern which appears before age three, often avoid physical contact and communicate with gestures rather than speech.

A February study by the US Centers for Disease Control and Prevention suggested that autism is more common in the United States than previously believed, affecting one child in 150.

The Canadian study was performed on 71 autistic children and 75 children without the disorder.

Fombonne said the study's findings also implied that "chelation therapies, whereby heavy metals are removed from the body using specific compounds, are not useful in the treatment of autism."

Early Intervention Provides Key To Increased IQ In Children With Autism

Release date: Wednesday, April 25, 2007

Intensive intervention given to toddlers with autism as young as three years old can significantly raise IQ levels, potentially allowing them to benefit from mainstream education, new research has revealed.

The results of a two year study into the impact of Early Intensive Behavioural Intervention (EIBI) were announced today by Geoffrey Maddrell, chairman of charity Research Autism, the UK’s independent expert body into autistic therapies (interventions).

A team from the University of Southampton undertook the research, funded by several UK charities including Research Autism, The Health Foundation and The Esmée Fairbairn Foundation.

Results show that a group of children who received two years of intensive tutoring (‘early intervention’) had higher IQs, more advanced language and better daily living skills than similar children receiving standard educational provision.

IQ increased for two thirds of the children receiving the early intervention and ‘very substantially’ for more than a quarter of them. For example one child moved from an IQ of 30 up to 70; another from an IQ of 72 to 115. Most of the population of the UK has an IQ of between 85 and 115.

In what was a ‘tough test’ into whether EIBI could prove beneficial, specially trained staff and parents taught children with autism a wide range of skills in their own homes for 25 hours a week. Teaching was individualised to take full advantage of each child’s abilities and focus on areas of need; each lesson was carefully broken down into easy steps and children received constant praise and other rewards for their successes.

“This form of teaching can, in many cases, lead to major change,” said Professor Bob Remington, Deputy Head of Southampton University’s School of Psychology. “In practice, the positive changes we see in IQ, language and daily living skills can make a real difference to the future lives of children with autism.

“But those embarking on EIBI should prepare for some hard work. Twenty five hours home therapy a week is a big commitment for children and parents alike. Before the research began we wondered if such intensive work would increase the emotional and psychological demands of childrearing, as teaching basic skills needs a lot of dedication and patience and family organisation has to adapt to the ever-present home tutors.

“In fact most parents took this in their stride. The reasons are clear. It’s harder to be helpless than it is to get involved in teaching, and in most cases our parents saw rapid improvements in their children’s skills and behaviour.”

The results of the research were announced at an event organised by Research Autism and attended by John Hutton, Secretary of State for Work and Pensions, to launch the world’s first information centre for autism interventions.

Interventions are therapies that could make it possible for people with autism to live more easily with their condition and lead full, and more fulfilled lives. They come in a variety of forms including diet, behavioural therapy, massage, structured education and communication techniques.

Despite an estimated 500,000 people in the UK alone living with a condition on the autism spectrum, there has never before been a central resource for parents, the medical community or people with autism to find information about properly researched interventions.

Geoffrey Maddrell, Research Autism’s chairman, said: “In the past, finding information about the range of interventions available was often a matter of chance and sometimes rumour. Speculation about some untested interventions abounds, which leads to sometimes dangerous ‘cures’ being touted as effective, often to quite desperate audiences.

“The website should prove invaluable for the thousands who previously had nowhere to turn for information about what could help improve the lives of someone with an autistic condition.”

www.researchautism.net lists more than 35 interventions and details the research undertaken to support them, or lack of. Each is graded for its potential efficacy. There is also a section requesting feedback to help develop new focus for research.

Mr Maddrell, who launched Research Autism at the request of the National Autistic Society three years ago, said research into interventions for individuals with autism was massively underfunded, and that Research Autism had identified three key headings that required urgent research: Identification, Intervention and Inclusion.

Said Mr Maddrell: “We can no longer leave those on the autistic spectrum and their families to muddle through, in huge distress; we can no longer leave a huge number of adults to lead solitary lives of isolation and exclusion; we can no longer leave the statutory authorities not knowing in many instances where to turn and where to direct resources. In this relatively early stage in the story of autism, certainly compared with other health issues, we must now marshal the resources for breakthrough research.”

About Good Bacteria

Good Bacteria May Relieve Autism Symptoms

Researchers questioned whether or not a daily dose of friendly bacteria known as probiotics might help treat autism. Clinical trials are being scheduled to test probiotics to determine if they could ease the gut problems associated with autism and possibly help with some of the psychological symptoms as well.

Nearly six out of every 1,000 people have autism, a condition that negatively affects communication and social relationships.

Some of the physical symptoms associated with autism include bloating, stomachaches and diarrhea. Since children with autism were more prone to having higher levels of Clostridia, a group of "bad" bacteria, probiotic food supplements might lower the levels of these bad bacteria and alleviate some of the autism symptoms.

Researchers haven't been able to find out what the cause of autism is, however genetic and environmental factors have been cited as likely contributors to the complex disorder.

Researchers agreed that toxic byproducts of the bacteria might play a role with the disease because of how they are absorbed into the blood and travel to the brain.

One type of bacteria researchers have found to produce promising results is called Lactobacillus plantarum 229v, which attaches itself to the lining of the gut and stimulates its growth. In addition to these functions, this bacteria has also been discovered to lower gut pH, which aids in the digestive process and helps fight infections.

Research has also revealed that friendly bacteria might be useful in treating irritable bowel disorder, diarrhea, colitis and bowel cancer. Experts have noticed an increasing acceptance of probiotics as a way to help manage health conditions.