Autism Help Phils

Britain bans doctor who linked autism to vaccine

2010-05-24T22:49:00.000-07:00

By MARIA CHENG, AP Medical Writer Maria Cheng, Ap Medical Writer – Mon May 24, 9:30 pm ET

LONDON – The doctor whose research linking autism and the vaccine for measles, mumps and rubella influenced millions of parents to refuse the shot for their children was banned Monday from practicing medicine in his native Britain.

Dr. Andrew Wakefield's 1998 study was discredited — but vaccination rates have never fully recovered and he continues to enjoy a vocal following, helped in the U.S. by endorsements from celebrities like Jim Carrey and Jenny McCarthy

Wakefield was the first researcher to publish a peer-reviewed study suggesting a connection between autism and the vaccine for measles, mumps and rubella. Legions of parents abandoned the vaccine, leading to a resurgence of measles in Western countries where it had been mostly stamped out. There are outbreaks across Europe every year and sporadic outbreaks in the U.S.

"That is Andrew Wakefield's legacy," said Paul Offit, chief of infectious diseases at the Children's Hospital of Philadelphia. "The hospitalizations and deaths of children from measles who could have easily avoided the disease."

Wakefield's discredited theories had a tremendous impact in the U.S., Offit said, adding: "He gave heft to the notion that vaccines in general cause autism."

In Britain, Wakefield's research led to a huge decline in the number of children receiving the MMR vaccine: from 95 percent in 1995 — enough to prevent measles outbreaks — to 50 percent in parts of London in the early 2000s. Rates have begun to recover, though not enough to prevent outbreaks. In 2006, a 13-year-old boy became the first person to die from measles in Britain in 14 years.

"The false suggestion of a link between autism and the MMR vaccine has done untold damage to the UK vaccination program," said Terence Stephenson, president of the Royal College of Paediatrics and Child Health. "Overwhelming scientific evidence shows that it is safe."

On Monday, Britain's General Medical Council, which licenses and oversees doctors, found Wakefield guilty of serious professional misconduct and stripped him of the right to practice medicine in the U.K. Wakefield said he plans to appeal the ruling, which takes effect within 28 days.

The council was acting on a finding in January that Wakefield and two other doctors showed a "callous disregard" for the children in their study, published in 1998 in the medical journal Lancet. The medical body said Wakefield took blood samples from children at his son's birthday party, paying them 5 pounds (about $7.20) each and later joked about the incident.

The study has since been widely rejected. From 1998-2004, studies in journals including the Lancet, the New England Journal of Medicine, Pediatrics and BMJ published papers showing no link between autism and the measles vaccine.

Wakefield moved to the U.S. in 2004 and set up an autism research center in Austin, Texas, where he gained a wide following despite being unlicensed as a doctor there and facing skepticism from the medical community. He quit earlier this year.

Offit said he doubted Britain's decision to strip the 53-year-old Wakefield of his medical license would convince many parents that vaccines are safe.

"He's become almost like a Christ-like figure and it doesn't matter that science has proven him wrong," Offit said. "He is a hero for parents who think no one else is listening to them."

Wakefield told The Associated Press Monday's decision was a sad day for British medicine. "None of this alters the fact that vaccines can cause autism," he said.

"These parents are not going away; the children are not going to go away and I most certainly am not going away," he said on NBC's "Today Show."

Wakefield claimed the U.S. government has been settling cases of vaccine-induced autism since 1991.

However, two rulings by a special branch of the U.S. Court of Federal Claims in March and last year found no link between vaccines and autism. More than 5,500 claims have been filed by families seeking compensation for children they claim were hurt by the vaccine.

Wakefield has won support from parents suspicious of vaccines, including Hollywood celebrities.

McCarthy, who has an autistic son, issued a statement in February with then boyfriend Carrey asserting Wakefield was "being vilified through a well-orchestrated smear campaign."

"It is our most sincere belief that Dr. Wakefield and parents of children with autism around the world are being subjected to a remarkable media campaign engineered by vaccine manufacturers," the actors said.

McCarthy, whose best-seller "Louder Than Words" details her search for treatments for her son Evan, wrote the foreword for a new book by Wakefield about autism and vaccines.

In Monday's ruling, the medical council said Wakefield abused his position as a doctor and "brought the medical profession into disrepute."

At the time of his study, Wakefield was working as a gastroenterologist at London's Royal Free Hospital and did not have approval for the research. The study suggested autistic children had a bowel disease and raised the possibility of a link between autism and vaccines. He had also been paid to advise lawyers representing parents who believed their children had been hurt by the MMR vaccine.

Ten of the study's authors later renounced its conclusions and it was retracted by the Lancet in February.

At least a dozen British medical associations, including the Royal College of Physicians, the Medical Research Council and the Wellcome Trust have issued statements verifying the safety of the measles, mumps and rubella vaccine.

This verdict is not about (the measles) vaccine," said Adam Finn, a professor of pediatrics at the University of Bristol Medical School. "We all now know that the vaccine is remarkably safe and enormously effective... We badly need to put this right for the sake of our own children and children worldwide."

Autistic Kids At The Movies :Where Shhhh Is'nt Allowed

2010-04-02T17:49:00.000-07:00

On April 10, thousands of children with autism will be able to do something that for many of them was impossible until recently: go to the movies. They'll see How to Train Your Dragon at one of 93 "sensory-friendly" screenings in 47 cities across 30 states. The lights will dim but remain on, the volume will be lowered, the movie will start promptly at 10 a.m. with no previews, families with special dietary needs will be allowed to bring snacks from home, and if the kids yell or even stroll around the theater, no one will complain.

April Autism Awareness Month marks the first anniversary of the Sensory Friendly Films program, a joint venture of AMC Entertainment and the Autism Society. Screenings of the G- or PG-rated movies, all newly released, are held once a month on a Saturday morning. Expansion to other cities is planned.

A regular at the screenings is Marianna Pollock of Virginia Beach, Va., and her 6-year-old son Xander. "We attempted a regular movie a few times," says Pollock. "We always ended up having to leave within the first 15 minutes because Xander gets so excited that he flaps and makes noise. It was very stressful."

Xander's behavior at the movies is typical for many people with autism, which the Centers for Disease Control and Prevention estimates affects 1 in 110 children. "One of the challenges for people with an autism spectrum disorder is coping with strong sensory stimulation," says psychologist Sandra Harris, who runs the Douglass Developmental Disabilities Center at Rutgers University in New Brunswick, N.J. "They may be overwhelmed by loud sounds, bright lights, crowds of people. A person of any age with an ASD may flap his or her hands, twist her fingers, call out or rock when she is excited by an event such as a movie."

Silvia Townsend of San Diego took her 12-year-old son Bailey to a regular movie. Once. "It was horrible," says Townsend. "He was terrified when the lights turned off. And when the loud music started, he was covering his ears and started screaming in obvious pain." Now Bailey loves attending sensory-friendly films.

So does 18-year-old Matthew Kay, who has severe autism and attends the films with other young adults and the staff of the group home he lives in near San Diego. The last time Matthew was able to attend a regular movie, he was 4.

The idea for the films first came about in 2007 when Marianne Ross, of Elkridge, Md., took her then 7-year-old daughter Meaghan, who has autism, to see Hairspray. Ross purposely picked an early matinee, when there would be fewer people. "Meaghan loves Zac Efron, so when he came onscreen, she just danced, twirled, flapped her hands and jumped up and down." Several patrons complained, and the manager asked the Rosses to leave. "I was so frustrated, angry and upset," recalls Ross, "because Meaghan had been so happy. I thought, There's got to be a lot of children in the same situation."

The next day, Ross called her local AMC movie theater in Columbia, Md., and spoke to manager Dan Harris. She asked if he'd be willing to set up a special screening. Harris, who had never known anyone with autism, met with Ross, heard her suggestions and came up with some adaptations to make the screening more sensory-friendly to kids with the disorder.

Ross put the word out about the upcoming screening through her local Autism Society chapter. "We didn't know if we'd have an empty auditorium," says Harris. "We had 300 seats, and we had to turn people away. I knew we were on to something."

Harris held three more monthly screenings, then contacted AMC's national headquarters in Kansas City, Mo., where he spoke with community-relations manager Cindy Huffstickler. She thought it was a great idea and was surprised no one had thought of it before. Huffstickler then contacted the Autism Society's national headquarters, which got its chapters behind a few national test screenings that proved just as successful.

"Attending a film where you know everyone in the theater is either in the same situation as you or is at least informed that the 'Silence is golden' policy doesn't apply today takes the tension away," says Angela Vandersteen of Greenwood, Ind., who takes her 5-year-old son Ray to the screenings. When Marianne Ross takes Meaghan to the movies, she also takes along her 8-year-old son Gavin, who does not have autism; he has developed a network of friends who are siblings of autistic kids at the screenings.

Even families of children without autism but with other special needs, like those with physical disabilities, have started attending the screenings, citing the sense of acceptance they feel there.

"Our children are constantly under scrutiny," says Xander's mother Marianna. "They look normal, so people often think they're just misbehaving. It becomes exhausting trying to validate their right to be themselves. At a sensory-friendly movie, we as a family finally get to go to a movie and relax. Boy, does that feel wonderful."

Medical journal retracts study linking autism to vaccine

2010-02-03T16:16:00.000-08:00

(CNN) -- The medical journal The Lancet on Tuesday retracted a controversial 1998 paper that linked the measles, mumps and rubella (MMR) vaccine to autism.

The study subsequently had been discredited, and last week, the lead author, Dr. Andrew Wakefield, was found to have acted unethically in conducting the research.

The General Medical Council, which oversees doctors in Britain, said that "there was a biased selection of patients in The Lancet paper" and that his "conduct in this regard was dishonest and irresponsible."

The panel found that Wakefield subjected some children in the study to various invasive medical procedures such as colonoscopies and MRI scans. He also paid children at his son's birthday party to have blood drawn for research purposes, an act that "showed a callous disregard" for the "distress and pain" of the children, the panel said.

After the council's findings last week, The Lancet retracted the study and released this statement.

"It has become clear that several elements of the 1998 paper by Wakefield et al. are incorrect, contrary to the findings of an earlier investigation. In particular, the claims in the original paper that children were 'consecutively referred' and that investigations were 'approved' by the local ethics committee have been proven to be false. Therefore we fully retract this paper from the published record."

Dr. Richard Horton, editor of The Lancet, said he reviewed the General Medical Council report regarding Wakefield's conduct.

"It's the most appalling catalog and litany of some the most terrible behavior in any research and is therefore very clear that it has to be retracted," he said.

CNN was unable to speak to Wakefield, but in a statement he denied wrongdoing.

"The allegations against me and against my colleagues are both unfounded and unjust and I invite anyone to examine the contents of these proceedings and come to their own conclusion. In fact, the Lancet paper does not claim to confirm a link between the MMR vaccine and autism. Research into that possible connection is still going on."

The Centers for Disease Control and Prevention praised The Lancet's retraction, saying, "It builds on the overwhelming body of research by the world's leading scientists that concludes there is no link between MMR vaccine and autism. We want to remind parents that vaccines are very safe and effective and they save lives. Parents who have questions about the safety of vaccines should talk to their pediatrician or their child's health care provider."

Since its publication, Wakefield's study has attracted many critics who argued that the work had been so flawed, it should not be regarded as scientific.

Wakefield theorized that the measles vaccine caused gastrointestinal problems and that those GI problems led to autism. In his view, the virus used in the vaccine grew in the intestinal tract, leading the bowel to become porous because of inflammation. Then material seeped from the bowel into the blood, Wakefield's theory said, affecting the nervous system and causing autism.

But subsequent research has been unable to duplicate Wakefield's findings.

A September 2008 study replicated key parts of Wakefield's original paper and found no evidence that the vaccine had a connection to either autism or GI disorders. The study, conducted at Columbia University, Massachusetts General Hospital and the CDC, also found no relationship between the timing of the vaccine and children getting GI disorders or autism.

The Wakefield study has been a key piece of evidence cited by many parents who do not vaccinate their children because of autism fears.

"The story became credible because it was published in The Lancet," Alison Singer, president of the Autism Science Foundation, said Tuesday. "It was in The Lancet, and we really rely on these medical journals."

Singer, the mother of a child with autism, added, "That study did a lot of harm. People became afraid of vaccinations. This is the Wakefield legacy: this unscientifically grounded fear of vaccinations that result in children dying from vaccine-preventable diseases."

Retractions are rare in medical journals and usually occur as a result of fraud or plagiarism, said Marcia Angell, a former editor of The New England Journal of Medicine.

"It is a major event when there is a retraction like this," she said. "It sounds like there was a misleading design of the study ... patients not randomly chosen. There were ethical violations."

William Schaffner, professor and chairman of the department of preventive medicine at Vanderbilt University School of Medicine, described the journal's level of action as "unprecedented."

"Since Wakefield's study came out, some 20 other studies have come out, and each one of these studies, done by different researchers, in different populations and in different countries, has denied the associations between vaccines and autism," he said. "Scientifically, this story is over."

Schaffner added, "This series of events is damning and should refocus all of us in the field to find better methods of diagnosis and treatments."

The Lancet came under criticism for the initial publication of the paper 12 years ago.

"The mere publishing of this paper created something that will never fully go way: the false notion that MMR caused autism," said Dr. Paul Offit, author of "Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure," and the chief of division of infectious diseases at the Children's Hospital of Philadelphia.

The retraction did little to change the opinion of Rebecca Estepp, a spokeswoman for Talk About Curing Autism.

Estepp said her son has autism and bowel problems. She said she remains convinced that he had a vaccine reaction and that Wakefield's research helped doctors identify how to help her son.

"I guess the GMC can say whatever they want to say for the rest of their existence, but I know that my son got better because of Dr. Wakefield," she said.

Generation Rescue, an advocacy and support group founded by actress Jenny McCarthy, whose son has autism, expressed support for Wakefield. A co-founder of the group, JB Handley, called him "a courageous honest doctor who told an inconvenient truth." McCarthy is a high-profile proponent of the belief that childhood vaccinations may play a part in the condition.

Generation Rescue criticized the General Medical Council's judgment on Wakefield with this statement: "The sole purpose of the GMC's ruling this week is to try and quell the growing concern of parents that the expanding vaccine schedule and the remarkable rise in autism are correlated."

It also advised parents to do their own research before deciding to give their child the MMR vaccine.

Cases in which U.S. families have sued alleging a vaccine-autism link have had mixed outcomes.

In 2007, a U.S. federal program intended to compensate victims of injuries caused by vaccines concluded that a 9-year-old girl's underlying illness had predisposed her to symptoms of autism and was "significantly aggravated" by the vaccinations.

Two years later, three American families sought compensation from the Vaccine Injury Compensation Program, but the panel ruled that they had not presented sufficient evidence to prove that the vaccines caused autism in their children.

Special, gifted

2010-01-26T15:21:00.000-08:00

By Michael Tan
Philippine Daily Inquirer
First Posted 21:41:00 01/14/2010

Filed Under: Children, Health, Air Transport

LAST Wednesday I began to write about the wide spectrum of conditions we are dealing with when we talk about special children. I discussed global development delay (GDD), mental retardation (MR) and autistic spectrum disorders (ASD), and how there might be overlaps with these conditions.

To make things even more complicated, there are many other medical conditions that are not just associated with, but might actually be the causes, of GDD and MR. For example, a child’s speech delay might be due to a hearing disability. Lead poisoning, which can come from house paint and vehicular emissions, can likewise affect mental development.

The term “special child” is a good one, but carries over the strong stigma associated with older terms, for example, “retarded” or even “mentally ill,” which is the way society stereotypes and judges people. I have heard conversations where someone used the term, and got a response like, “Ah, abnormal child” or “Ah, retarded.”

Hidden labels

The hidden labels of “abnormal” and “retarded” are dangerous, often blocking parents from going to seek professional help and diagnosis, or marginalizing the stigmatized child in school and in the community.

Who knows how many children were forced to drop out of schools because they seemed “retarded” when the slower mental development might have been caused by easily reversible iron deficiency anemia, or malnutrition?

Some years back in my work in an urban poor community in Quezon City, I encountered someone who had dropped out of school at the age of 14, ashamed because he had only reached fourth grade. I suspected he had a learning disability called dyslexia, where the letters in words keep getting interchanged, which makes reading difficult. My suspicions came from the way he would text messages, as well as read signs. We never got to confirm if he had dyslexia because his family could not afford the diagnostic tests. He is now 20 and has a family, but can only find occasional work.

The term “special child” does include those with learning disabilities, and there’s another wide range of conditions here, many of which many families still don’t recognize. Even near-sightedness can create learning difficulties, yet in developing countries like the Philippines, many families do not have their children’s vision checked, partly because of economics and partly because there is still the idea that children don’t generally need glasses.

It might help then if we shift our mind-sets away from “special child” (and its continuing negative connotations) to “children with special needs.” This is especially important for teachers, who tend to only recognize the more extreme and visible “outliers” from the norm: the very “bright” ones, who are then labeled “gifted” and the ones who seem “slow.”

I am sorry about all those quotation marks but as I pointed out on Wednesday, intelligence is a controversial concept. You may have children labeled mentally retarded who have awesome skills in some fields, for example, math or music.

The old term used for them was “idiot savant” but objections have been raised with the term “idiot” so today there are alternative terms like “autistic savant” and even “mega savant,” emphasizing the aspect of genius.

My point is that we may have many savants out there whose potentials will never be developed because our biases about what is normal block us from seeing less apparent forms of genius.

Interchanged terms

Let’s get back now to the Cebu Pacific controversy. Some media reports said that the airline had a rule against boarding more than one passenger with “mental illnesses” on each flight. Other reports said it was more than one “special child.” The way the two terms are interchanged shows that our fears of the “special child” stem from a notion that they are mentally ill.

In the Internet exchanges about the Cebu Pacific incidents, people have argued that special children should not be allowed to fly because they become unruly or violent and could endanger other passengers. Others paint a scenario where there is a flight emergency and that flight attendants would have a hard time evacuating the “retarded.”

But if we use such criteria we would then have to set passenger quotas on people who tend to binge on alcohol. We would also need quotas for infants and toddlers, on the elderly, and on people who are physically handicapped, even someone having a cast for a fractured arm or foot.

The Cebu Pacific controversy reminded me of a case in the United States. In October last year, a woman from New Mexico filed a lawsuit against three airlines that were operating a flight from which she had been asked to disembark. The incident dated back to 2006 and what had happened was that she was breastfeeding her one-year-old daughter while waiting for the plane to take off. The flight attendant asked her to cover herself with a blanket and when she refused, she was made to get off the plane.

The passenger’s complaint led to women launching protest actions in 19 airports where they breastfed in public.

My point is that airline policies often only reflect public notions of morality and what is “normal” or “abnormal.” Cebu Pacific’s policy only reflected public discomfort with and fears of “special children,” and unfortunately, the ones who are most visible with their conditions – children with Down syndrome and global developmental delays, for example – end up the most stigmatized.

Diversity

Rather than training our sights on Cebu Pacific alone, we need to look at how we respond to special children in general in our own homes and schools.

Let me give a concrete example here. Right now, special children usually end up in special schools, which can be very much more expensive than regular schools. Now, what would happen if regular schools began to accept special children? It is actually happening, with a handful of schools, but with quotas and with a screening process that assesses whether the special children can handle life in the regular school.

It’s a good policy, expanding the options for the special children, while allowing “regular” children to become part of the worlds of special children. I visited one such school the other day and realized this is possible only when the schools’ parents and teachers value diversity.

Unfortunately, many of our schools and social institutions, fear anyone who’s different. They will not even allow adopted children, for example, or children of single mothers and separated couples simply because they don’t fit into definitions of a “normal” family. The underlying message of such discriminatory policies is that the “abnormal” children – adopted, “special,” whatever – might “contaminate” the “normal” ones.

Ultimately, we have to recognize that while special children need more time and attention, we also need to be sensitive to how children can be so different from each other, so that siblings in a family or children in one class, will need individualized attention. With that kind of thinking, we would value all children as special, and as gifted.

SM, ASP celebrate National Autism Week

2010-01-26T15:19:00.000-08:00

MANILA, Philippines - The SM Committee on Disability Affairs, under the CSR umbrella of SM Cares, together with the Autism Society Philippines (ASP), is celebrating the 14th National Autism Week with the theme “Giant Leaps...Transcending Boundaries” simultaneously in all SM malls nationwide until Jan. 24.

Engineer Bien Mateo, chairman of the SM Committee on Disability Affairs, was made by the ASP as this year’s honorary chairman of the 14th National Autism Week Working Committee.

The celebration took off on Jan. 17 at the SM North Edsa Skydome with a Holy Mass and Family Fun Day. It will culminate with “Angels Walk for Autism” on Jan. 24 at the SM Mall of Asia.

The National Autism Week, which is celebrated every year, aims to raise public awareness on the need to provide a supportive environment among communities to enable children and adults with autism to live with dignity and enable them to function independently and contribute productively to society.

Autism is a lifelong disability and getting people to understand and support ASP activities can make a real difference to the lives of those affected with autism and their families.

SM, through its Committee on Disability Affairs, has been very supportive of the causes of the ASP.

It has offered SM Malls as a venue for all their activities and hosted last September the first-ever sensory film showing of the Disney animated movie “Up,” which was attended by some 100 kids with autism and their families.

Because of its success, the sensory film program will be rolled out nationwide in SM Cinemas and will be scheduled in close coordination with ASP.

High Rates Of Birth Defects Found In Autistic Children

2010-01-22T18:46:00.000-08:00

Nearly two-thirds of the children with Autistic Spectrum Disorders recorded in the National Birth Defect Registry (NBDR) also suffer from structural birth defects, according the national nonprofit, Birth Defect Research for Children (BDRC). The group reported that most of the defects affect the face, head and central nervous systems of newborns.

Birth Defect Research for Children, a national nonprofit founded in 1982, maintains the registry to collect data from parents on all kinds of structural birth defects and functional deficits including autistic spectrum disorders. Betty Mekdeci, executive director of BDRC explains, "We designed the registry with a collaboration of prominent scientists. The registry's extensive data allows researchers to identify possible patterns underlying the incidence of birth defects as well as prenatal conditions and exposures. We are asking all parents of children with structural and functional birth defects to contact us to register for our database to continue this study."

"Our current data suggests that genetic and environmental triggers may interact to account for the increase in ASDs. We need to collect more data to confirm the pattern we are seeing."

The new analysis reveals that over 60% cases also had structural birth defects, primarily Central Nervous System (CNS) or Craniofacial Defects. The other 40% of the ASD cases reported associated developmental problems, but no reported structural birth defects.

Most frequent CNS disorders reported were Microcephaly (small head), Cerebral Palsy, Chiari Malformation (a structural defect of the brain) and Absent or Thin Corpus Callosum (the band connecting the two halves of the brain), The most frequent Craniofacial Defects included Low Set Ears, Partial Hearing Loss, Abnormal Teeth and Abnormal Facial Structure.

The registry also collects data on prenatal exposures to medications, illnesses and toxins. The most frequently reported maternal exposure was acetaminophen (AP). AP use has increased in recent years. Recent studies have reported associations between maternal AP ingestion and childhood asthma and a stomach defect called gastroschisis.

Scientific Learning's Fast ForWord Software Approved By Australian Government As Intervention For Children With Autism

2010-01-22T18:41:00.000-08:00

Scientific Learning Corp. (NASDAQ:SCIL) today announced that the Australian Government's Department of Families, Housing, Community Services and Indigenous Affairs has named the Fast ForWord ® family of products as an approved intervention for children under age six who are diagnosed with Autism Spectrum Disorders (ASDs).

Designed to accelerate learning by developing the student brain to process more efficiently, the Fast ForWord educational software consists of scientifically proven, intervention programs that apply neuroscience principles to build the fundamental cognitive skills required to read and learn. The strengthening of these skills results in a wide range of improved critical language and reading abilities, such as phonological awareness, phonemic awareness, fluency, vocabulary, comprehension, decoding, working memory, syntax and grammar.

In Australia, the Fast ForWord program is available to eligible children under the Helping Children with Autism funding package. Through this package, the Australian Government is working to address the need for support and services for children with ASDs. As part of the package, the government offers funding for early intervention services for children ages zero to seven who are diagnosed with an ASD. Eligible families can access the Fast ForWord program from Scientific Learning's two Value Added Representative (VAR) organizations in Australia, LearnFast Australia/Lindfield Speech Pathology & Learning Center in Sydney, New South Wales and Sonic Learning in Perth.

Communication Problems In The Brain

2010-01-22T17:52:00.000-08:00

Maturation disorders of nerve terminals may trigger autism; researchers in Heidelberg publish in the Proceedings of the National Academy of Sciences

For brain cells to communicate, the contacts to each other must function. The protein molecule neuroligin-1 plays an important role in this as it stimulates the necessary maturation processes at the contact sites (synapses) of the nerves. A synaptic maturation disorder is possibly involved in the development of autism. Dr. Thomas Dresbach and his team from the Institute for Anatomy and Cell Biology at the University of Heidelberg, in cooperation with the study group led by Professor Dr. Thomas Kuner at the same institute and Professor Dr. Nils Brose, Max Planck Institute for Experimental Medicine in Göttingen, have published their results in the prestigious international journal PNAS (Proceedings of the National Academy of Sciences).

One hundred billion nerve cells make our brain a thinking machine. Each of these nerve fibers produces a long extension, the axon, which terminates in numerous small knobs. Transmitters are released here that transfer information to the next nerve cell. The contact site between nerve ending and adjacent nerve cell is called a synapse. The number and location of active synapses determine which areas of the brain are especially active at a given time.

Neuroligin-1 protein necessary for maturation

The synapses of young nerve cells must mature before they can release their neurotransmitters to the full extent. Researchers were able to show using genetically modified nerve cells from mice that the postsynaptic nerve cell, the receptor, must form a sufficient amount of a certain protein molecule, neuroligin-1, to allow this maturation process to take place. In addition, the nerve endings from where information is sent must release slight amounts of neurotransmitters to stimulate the neuroligin in the postsynaptic nerve cell.

"A fully functioning contact can develop only if both sides, transmitter and receptor of information, are involved in the maturation process," explained Dr. Dresbach. If no neuroligin-1 is formed, the nerve endings remain at an immature stage and release fewer neurotransmitters; the flow of information is interrupted. The nerve endings can only whisper, so to speak.

Autism caused by a malfunction at the synapses?
"The results are significant for actual concepts about how autism develops," says Professor Dr. Joachim Kirsch, director of the Institute for Anatomy and Cell Biology. Symptoms of autism are first noticed in early childhood as an information processing disorder. The symptoms may be more or less pronounced, but all patients display weaknesses in social contacts and communication. "There are many indications that malfunctions of synaptic molecules are involved in the development of this illness. It has thus far been unclear exactly what these malfunctions are, but we now know what to look for," says Professor Kirsch. The study was funded by the FRONTIER program of the excellence initiative at the University of Heidelberg.

Rate Of Autism Disorders Climbs To 1 Percent Among 8 Year Olds

2010-01-22T17:49:00.000-08:00

Autism and related development disorders are becoming more common, with a prevalence rate approaching 1 percent among American 8-year-olds, according to new data from researchers at the University of Alabama at Birmingham (UAB) School of Public Health and the Centers for Disease Control and Prevention (CDC).

The study is a partnership between UAB, the CDC and 10 other U.S. research sites. It shows that one in 110 American 8-year-olds is classified as having an autism spectrum disorder (ASD), a 57 percent increase in ASD cases compared to four years earlier.

The new findings, published Dec. 18 in the CDC's Morbidity and Mortality Weekly Report (MMWR), highlight the need for social and educational services to help those affected by the condition, said Beverly Mulvihill, Ph.D., a UAB associate professor of public health and co-author on the study.

ASDs are a group of developmental disabilities such as autism and Asperger disorder that are characterized by delays or changes in childhood socialization, communication and behavior.

"This is a dramatic increase in the number of kids classified as autistic or documented on the spectrum of similar disorders," Mulvihill said. "It is not entirely clear what is causing the rise, but we know major collaborative efforts are needed to improve the understanding and lives of people and families impacted."

The MMWR study discusses possible factors that might contribute to the increase in ASD cases. They include a broader definition of autism disorders and a heightened awareness of ASD by parents, doctors, educators and other professionals. The findings do not address whether or not any of the increase is attributable to a true increase in the risk of developing ASD, more frequent and earlier diagnoses, and other factors.

Data comes from the Autism and Developmental Disabilities Monitoring (ADDM) Network, a collection of 11 sites in Alabama, Arizona, Colorado, Florida, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina and Wisconsin. ADDM reviewers are uniformly trained to review and confirm cases; some children included in the study have documented ASD symptoms but never received a diagnosis.

The study also found that boys are 4.5 times more likely than girls to have ASD, a finding that confirms earlier studies, says Martha Wingate, Dr.P.H., a UAB assistant professor of public health and study co-author.

"It still is not clear why males more frequently are affected," Wingate said. "One thing we know for sure is that more research is needed to quantify the effects of single or multiple factors such as diagnosis patterns, inclusion of milder cases and other components."

The ADDM sites are not selected based on any statistical pattern, but the 300,000-plus children included in the study represent 8 percent of the nation's 8-year-olds.

The Alabama Autism Surveillance Project, located within the UAB Department of Health Care Organization and Policy, is a member of the ADDM network. Funding for the project is from the CDC's National Center for Birth Defects and Developmental Disabilities Division.

About the UAB School of Public Health

The School of Public Health is a community of scholars and professionals working and teaching in varied arenas of public health with the goal of fostering research and best practices crucial to the health of our nation and its peoples. The school offers more than 20 areas of study and manages dozens of research and community-service centers.

Landmark Consensus Articles Published In Pediatrics Acknowledge The Need To Improve Treatment Of Gastrointestinal Disorders In Individuals With Autism

2010-01-22T17:40:00.000-08:00

A causal relationship between gastrointestinal disorders and the behavioral features of children with autism spectrum disorder has been acknowledged for years by parents caring for those affected, yet dismissed by mainstream medicine. A landmark paper, Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children with ASDs, a consensus report published this week in Pediatrics, is an important step forward in closing this gap. Acknowledging that certain behavioral manifestations of patients with ASD such as self-injury and poor sleep might have a GI basis is the first step toward achieving substantive therapies.

Because it was felt that many individuals with ASD might have undiagnosed medical conditions, often involving the gastrointestinal tract, representatives from the Autism Research Institute (ARI) and other autism advocacy groups worked to convene a gut consensus meeting from which the articles were derived. On May 29-30, 2008, a multidisciplinary panel of 27 clinical and research experts met in Boston, Massachusetts to develop recommendations for the evaluation and treatment of GI disorders in individuals with ASD.

ARI's Director Dr. Stephen Edelson commented, "This is truly a human rights issue; every child deserves proper medical attention--whether or not they have autism. This published report brings much-needed focus to gastrointestinal problems that are commonly associated with the autism spectrum. The conclusions of the report are clear: physicians need to be alert and responsive to such problems when treating these patients; additional research on prevalence, cause, and appropriate treatment is imperative."

Parents and physicians should be on the lookout for the most common GI symptoms reported in people with ASD: chronic constipation, abdominal pain with or without diarrhea, reflux, and abdominal bloating. Problem behaviors such as self-injury and aggression, as well as overall changes such as sleep disturbance or irritability, might be indicators of stomach pain. The authors concluded that "The approach to evaluation and diagnosis of possible underlying medical conditions, in particular GI disorders, should be no different from the standard of care for persons without ASD."

First Step Toward Needed Guidelines For Children With Autism Provided By Pediatrics Gastrointestinal Consensus Statement And Recommendations

2010-01-22T16:33:00.000-08:00

Autism Speaks applauds the consensus statement and recommendations for the evaluation, diagnosis, and treatment of gastrointestinal (GI) disorders in children with autism spectrum disorders (ASD) released online in Pediatrics as one step in advancing physician awareness of unique challenges in the medical management of children with autism. "We are pleased to see the publication of these consensus recommendations. Autism Speaks' current efforts will take this further by creating evidence-based guidelines for physicians. The goal is to develop a comprehensive care model that will guide physicians in addressing a wide range of medical issues, including GI problems, that many individuals with autism suffer from," commented Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

The two reports published today present outcomes of a meeting held in May 2008, sponsored by the Autism Forum, in which working groups participating in the meeting reviewed current evidence on the evaluation and treatment of GI disorders specifically for children with autism. The 2008 meeting from which these consensus recommendations were derived recognized that health care practitioners severely lack solid information to guide care of children with autism and GI problems and there is a need for more research data, including genetic research, as a prerequisite to develop evidence-based guidelines specific to autism.

"The Pediatrics paper represents long-sought recognition by the mainstream medical community that treatment of GI problems in children with autism requires specific and specialized approaches," reacted Dr. Dawson. "Autism Speaks has been actively engaged in the study of GI problems associated with children with autism, working toward enhanced medical community awareness for over five years through its research agenda and the Autism Speaks' Autism Treatment Network (ATN)."

Dan Coury, M.D., ATN medical director, commented, "We are delighted to see the publication of important information that can support clinicians and caregivers in providing better care for children with autism, particularly with GI concerns, as parents unfortunately very often find it difficult to identify physicians who have an understanding of these issues and are able to provide appropriate medical care for their children. GI and pediatric specialists from six of the ATN sites participated in the forum and in the development of these recommendations, which shows the power of interaction among the communities and individuals dedicated to this problem. Autism Speaks is already engaged in the crucial next step which is to move beyond these consensus-based recommendations to develop evidence-based clinical guidelines." In addition to development of evidence-based clinical guidelines for GI issues, the ATN is also currently working on evidence based clinical guidelines for medical management of sleep, and neurologic disorders associated with autism. "Delivery of evidence-based clinical guidelines will serve as excellent opportunities for future training and education of physicians," added Dr. Dawson.

The consensus statement highlights several important themes, the first emphasizing that GI problems are a genuine concern in the ASD population and that these disorders exacerbate or contribute to problem behaviors. The need for awareness of how GI problems manifest in children with autism and the potential for accompanying nutritional complications and impaired quality of life were also emphasized.

In the second paper, the authors make consensus recommendations providing guidance on how current general pediatric standards of care that can and should be applied for children with ASD. George Fuchs, M.D., a co-author on the two papers and chair of the ATN GI Committee remarked, "The recommendations provide important guidance for the clinician to adapt the current practices of care (for abdominal pain, chronic constipation and gastroesophageal reflux) for the child with autism. The recommendations from the Autism Forum meeting complement the ATN's on-going work to develop evidence-based, ASD-specific guidelines. The ATN is currently piloting newly created guidelines and monitoring their effectiveness. We anticipate this data will contribute to an evidence-based foundation to support best practices for GI problems in ASD."

Autism Speaks is committed to the sustained support of efforts that address co-morbid medical conditions in the ASD population. In recognizing that there's not enough evidence in any GI area and more research is needed, the Pediatric papers reaffirm the importance of the recent November 2009, Autism Speaks sponsored symposium and workshop on Gastrointestinal Disorders in Autism Spectrum Disorders. The symposium and workshop represented an important partnership with the American Academy of Pediatrics, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) - the largest professional society for GI and nutritional specialists, and a professional authority for the development and implementation of pediatric GI guidelines. The symposium raised awareness and provided the latest scientific information to an audience of 168 researchers, clinicians, and pediatric GI and nutrition specialists, most of whom had limited expertise in autism. The symposium was followed by a workshop that brought together a diverse group of experts in GI, nutrition, pediatrics, pain, ASD, and biological research. Recommendations were developed for an expanded and targeted research agenda for the field that will address current gaps in the knowledge base and aim to advance evaluation and treatment of ASD-GI disorders. Proceedings from the meeting are scheduled to be published in 2010. A unique and important element in both the Symposium and Workshop was the inclusion of parents of children with ASD.

Early intervention aids children with autism: study

2009-12-01T18:34:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Children With Autism More Likely To Have Handwriting Problems

2009-11-12T23:16:00.000-08:00

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

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

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

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

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

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

Aspergers:A Powerful Identity, a Vanishing Diagnosis

2009-11-07T23:48:00.000-08:00

By CLAUDIA WALLIS
Published: November 2, 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2009-10-07T01:51:00.000-07:00

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

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

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

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

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

One year later, Project Lifesaver still keeping people safe

2009-09-07T04:33:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

Autism group probes why children love Thomas the Tank Engine

2009-09-06T16:48:00.000-07:00

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

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

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

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

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

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

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

Children with autism often have trouble decoding human expressions.

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

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

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

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

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

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

Virtual world teaches real-world skills

2009-03-09T15:24:00.000-07:00

Game helps people with Asperger's practice socializing

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

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

Tom Loftus
Columnist
• E-mail

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2009-03-02T14:23:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

Early Intervention Lessens Impact Of Autism

2009-03-02T00:24:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

Couple Lives With Autism, Comfort of Each Other

2009-02-25T21:42:00.000-08:00

Love Bloomed After Socializing Was Learned
By THEA TRACHTENBERG and LINDSAY GOLDWERT
Feb. 25, 2009

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

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

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

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

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

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

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

2009-02-22T14:03:00.000-08:00

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

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

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

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

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

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

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

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

Important Clue To Learning Deficit In Children With Autism

2009-02-22T13:57:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Computer Game Helps Autistic Children Recognize Emotions

2009-02-22T13:53:00.000-08:00

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

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

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

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

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

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

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

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

Surprising Language Abilities In Children With Autism

2009-02-22T13:42:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

2009-02-21T16:59:00.000-08:00

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

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

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

But you don't.

You can't.

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

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

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

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

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

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

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

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

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

Decker Cote suffers from autism.

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

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

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

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

The longest tantrum reached 17 consecutive hours.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

One of the possible reasons?

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

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

Her one rule: Avoid the Internet.

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

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

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

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

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

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

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

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

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

Michalski had studied under Lovaas at UCLA.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But the puzzle is coming together.

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

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

Measure requires insurers to provide coverage for autism

By VINCE DEVLIN of the Missoulian

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Vaccines don't cause autism, special court says

2009-02-12T21:57:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pre-natal test may detect autism

2009-01-14T15:22:00.000-08:00

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

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

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

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

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

Animated series helped children with autism recognize emotions: study

2009-01-14T12:49:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Precious Child's Different Journey

2008-11-14T16:33:00.000-08:00

"You still have a great kid, but you're on a different journey. You'll dream a different dream for your child, not a bad one, just different." Those are the words a mother longs to hear from her physician once she discovers her child has autism. These children have "different brains and different abilities" and they have the capacity to teach each of us a new skill, as they make this world a better place.

This is a mother's journey as she realizes something is different in her child. When the child does not respond to her name, the family seeks medical help. First, the 18 month old has a hearing test with normal results. With concern, the parents visit the doctor at three years of age and hear the soothing advice, "give the child more time." Deep down both mother and father feel something is not right, but cling to hope that their sweet child will be okay. By the age of five, this child attends preschool. During spring conference, the teachers share somber concerns. "Your child," the teacher explains gently, "has abnormal speech prosody - tone of voice. She plays alone with little interest in other children and talks mostly in memorized movie scripts, not flowing conversation. An evaluation with Child Find can help," suggests the caring teacher. Acknowledging a problem in your child is painful for any parent. However, when someone clearly communicates that a problem exists, the parents eagerly seek help. These grateful parents recall, "Knowledgeable, preschool staff made a tremendous difference in getting our child timely help."

In their search for answers, the parents read, study, and ask questions of many health and educational experts, as well as other parents. One evening, the father stumbles upon answers that bring hollow relief and overwhelming anxiety. As he studies information about Asperger Syndrome, an autism spectrum disorder first described in 1944, this father faces the harsh reality that his child shows 14 of the 20 signs.

With new information, both parents realize the only way to truly help their precious child is to grant permission for health and educational professionals to say the "A" word, AUTISM. This family now treads on a mysterious path. However, by facing autism, the family partners with health and educational experts to work collaboratively in the child's best interest. Finally, the mother, father, and especially the lovely child are no longer alone on their journey.

Looking back, the parents' greatest regret is they did not desperately seek help sooner for their child simply because they did not understand. Therefore, crucial early intervention time was lost. "It is so important for everyone caring for children to know the signs of autism and help families get the earliest diagnosis and treatment possible. All kids with Autism can make progress and the earlier they get help the better their chances are," advise these parents who navigate autism's path.

In the US today, autism spectrum disorders (ASD) affect 1 in every 150 children who are eight years old and are increasing at alarming rates. According to the Center for Disease Control and Prevention (CDC), "Between 1994 and 2006, the number of 6 to 17-year-old children classified as having an ASD in public special education programs increased from 22,664 to 211,610." These disorders are more common in children than diabetes, spinal bifida and even Down's syndrome.

Children with autism spectrum disorders have a problem in the brain that leads to
developmental challenges. These children may interact, communicate, behave and learn differently than others and have symptoms that vary from mild to severe. ASD children possess thinking and learning abilities that vary from gifted to severely challenged. The most familiar type of ASD is autistic disorder but others include "pervasive developmental disorder-not otherwise specified" and Asperger Syndrome.

Children with autism spectrum disorders do not follow regular patterns of child development. In many cases, parents accurately notice that something is different, but find it difficult to explain and understand what is happening to the child. Even childcare providers and preschool teachers often identify unusual behaviors, but sometimes are uncertain what to do with these observations.

Today health experts agree that early recognition and intervention with behavioral therapies for children with ASD leads to amazing results. ASD can be recognized as early as 18 months and some developmental delays are seen in infancy. Seeking help from health care professionals and organizations like Child Find make a huge impact on the child's progress and success.

Chiropractor treats autistic children

2008-11-14T16:18:00.000-08:00

ONONDAGA COUNTY, N.Y. -- Aidan Fitzgerald, 5, has autism. He started chiropractic treatment in the summer and now visits twice a week.

"It makes him feel better, so he looks forward to coming here ‘cause he knows that he's going to feel better afterwards," said Aidan's mother, Kari Fitzgerald.

Cicero-based chiropractor Dr. Joe Borio says chiropractic treatment helps balance out the nervous system and ignite the brain in autistic children.

"When you adjust the spine, you actually stimulate certain parts of the brain and actually turn some of those switches on," said Dr. Borio.

Aidan's mother says the effects for him are immediate. She says it calms self stimulatory behaviors, like hand flapping, and increases eye contact and motor skills.

"It's a definite difference in how his behavior is. He is able to pay attention better. He's able to focus better," said Fitzgerald.

Dr. Borio says the chiropractic adjustments are a part of a broader program, which includes diet and other remedies.

"We certainly eliminate wheat and eliminate dairy in all autistic children," Dr. Borio said.

Dr. Borio says he also uses volcanic ash, approved by both the FDA and CDC, to detox children, since some believe autism could be related to a toxicity of metals.

"That's introduced in a powder form. Kids take about a half a teaspoon a day and they incorporate that into their diet. And what that does is it eliminates a lot of the heavy metals within the body," said Dr. Borio.

Dr. Borio is currently treating about 50 children. Kari Fitzgerald says it something her son will continue to do.

"It's definitely a big part of the whole and it's really helped a lot," Fitzgerald said.

A support group called Healing Autism CNY meets every other week at Dr. Borio's office.

10 Myths About Autism Experts Examine Misconceptions About Autism

2008-10-24T02:15:00.000-07:00

10 Myths About Autism
Experts Examine Misconceptions About Autism
By LARA SALAHI
ABC News Medical Unit
Oct. 23, 2008

As the number of Americans diagnosed with autism spectrum disorders climbs, so, too, does the number of questions surrounding this disorder. Namely, what is autism, and what is causing a rise in autism diagnoses among adults and children nationwide?

Amid these questions, television shows and magazines feature a barrage of stories and imagery -- families rallying for and against vaccines, debates between medical experts pointing to both genetic and environmental causes, and images of individuals diagnosed with autism who struggle to speak and function independently, while others can interact with others and are able to hold jobs. For many, these competing messages may make this already complex condition even more confusing.

Fortunately, doctors and researchers are learning more about the causes and characteristics of autism.

The following are answers to 10 common myths, that may help us better recognize the range of symptoms we call autism spectrum disorders.

Myth: Autism is an emotional or mental health disorder.

While physical or social behaviors of individuals with autism may suggest that they have a psychological disorder, autism is actually a biological illness that affects the brain's growth and development.

"In the case of autism, the parts of the brain that are most affected seem to impact three areas of functioning," said Michael Alessandri, executive director of the University of Miami's Center for Autism and Related Disabilities. "Social behavior, communication and restricted and repetitive rituals and routines are ways that the child or the adult with autism interact with the environment."

Although autism is now understood to be a neurodevelopmental disorder, Alessandri, an expert for ABCNews.com's OnCall+ Autism section, said autism can still be considered a complex disorder because its range of symptoms is so diverse.

"Scientists and clinicians now understand that autism is not a singular entity, but rather, a variety of syndromes that ... create the autism spectrum disorders," said Alessandri.

Myth: There is an autism epidemic.

The word "epidemic" often implies a sudden burst in the number of individuals within a fixed time who have, in this case, autism.

Although the CDC reports that one out of 150 children born have an autism spectrum disorder, some experts are quick to question whether a surge in autism cases is actually occurring. Some are more likely to link the upshot of numbers to the combination of a broader definition of autism, a wider spectrum, and an earlier diagnosis.

"The condition has not become more widespread, but there is more diagnosis of autism," said Dr. Bob Marion, director of Children's Evaluation and Rehabilitation Center at Albert Einstein College of Medicine in New York.

Sheila Wagner, assistant director of the Autism Center at Emory University in Atlanta, added that more awareness of symptoms has allowed more people to identify individuals who have autism.

"There's a lot of media exposure to autism, in television and movies," said Wagner. "This has made [autism] more recognizable in the lay population."

Myth: Autism can be cured.

Some parents may allude to a certain diet, medicine, or set of behavioral treatments that have cured their autistic children, where other parents may try the same mode of treatment and see no results. While there are treatments created to improve an autistic child's ability, there is no known cure for autism.

"We do know that with early intervention with younger children and Applied Behavioral Analysis, we can improve a child's functioning," said Marion.

Applied Behavior Analysis, or ABA, is one form of therapy for newly diagnosed children. It includes repeating behavioral activities to improve a child's social and physical functions.

According to Marion, there is no blanket treatment for autism, and it is up to the individual's doctor to assess what treatment will offer the best benefit for each autistic child.

In some cases, Marion said, behaviors, including eye contact, interaction with others and development of language skills, will significantly improve -- but the underlying biological disorder will not change.

"And that is definitely not a cure," he said.

Myth: Autism is the result of cold and unemotional parents.

In the 1940s, Austrian doctor Bruno Bettelheim theorized that autism was a result of parents, especially mothers, who did not love their children. Children in such situations would withdraw and become autistic, Bettelheim believed.

However, researchers have thawed the "refrigerator mother" theory. According to medical experts, a child's autism diagnosis has nothing to do with how the child is raised.

"We don't know if there are any things that a parent can do or not do, conclusively, will determine whether their child gets autism or not," said Dr. Daniel Geshwind, director of UCLA's neurogenetics program and center for autism research. "Most of the evidence right now points to there being a very strong genetic predisposition in most cases of autism, but not all."

Myth: Individuals with autism always have hidden or exceptional talents.

Stephen Wiltshire, 34, is best known as the human camera. He can replicate architectural designs and landscapes down to each blade of grass -- even if he is only given one opportunity to observe the area he is drawing. Wiltshire has reproduced panoramic scenes of Tokyo, Rome and London by memory after one short helicopter ride over each of the cities.

Wiltshire is an autistic savant. That is, he has extraordinary cognitive skills that allow him to recall details of designs, numbers and measurements that are normally considered too difficult to remember.

The concept of an autistic individual as a savant may have been popularized by Dustin Hoffman's character in the movie "Rain Man."

But while Marion acknowledges that there is a minority group of individuals with autism who have unusual islets of skills, savants are an unrealistic portrayal of the majority of individuals on the spectrum. He said most do not have talents or skills that distinguish themselves by extraordinary talents.

"There are strengths and weaknesses in every child," said Marion. "It's important for every child with autism to have a multidisciplinary evaluation by health professionals who have experience in assessing a child's skills and deficits, to come up with an educational plan that will benefit the child the most."

Myth: Repetitive or ritualistic behaviors should be stopped.

One of the classic indicators of autism is repetitive and ritualistic behaviors, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), a physician's tool to diagnose autism.

While these behaviors -- which can include hand flapping, banging on walls or rocking back and forth -- may seem odd, they do have a purpose: they can be calming; they can feel good; and they may help the individual communicate with others, said Wagner.

Repetitive behaviors may only pose a problem if they begin interfering in family life or if they prevent those with autism from functioning independently, Wagner added.

However, according to Dr. Pauline Filipek, associate professor of pediatrics and neurology at the University of California, Irvine, a child may learn to outgrow repetitive behaviors.

"Often, as an individual gets older, they learn that such behaviors make them stand out in society, and they learn to miniaturize those behaviors," said Filipek.

Myth: Individuals with autism are unable to build social relationships.

"This is a generalization and needs to be individualized because the spectrum is so wide," said Marion.

In short, social relationships are possible for some individuals on the autism spectrum, but not for others on the most severe end of the spectrum, Marion said.

The DSM IV, which includes diagnosing guidelines for autism, lists "impairment in social interaction" as one indication that an individual can have an autism spectrum disorder. But not every child on the autism spectrum will have the same degree of difficulty connecting with others.

"At the most severe end of the spectrum, yes, that's true," said Marion. "But there is a multitude of children who have friends, and even some who do have close relationships."

Myth: Autistic individuals are a danger to society.

"It is a disservice to think that all people with autism are dangerous," said Wagner.

The idea rises from numerous news stories of individuals diagnosed with Asperger's syndrome, a high form of autism, who have been accused of burglary and, at times, murder.

However, if you look at the entire population of people on the autism spectrum, the number of people involved in crime is small, said Wagner. If someone with autism were to act out, it may be due to frustration or perhaps physical or emotional overstimulation, not necessarily malice, she said.

Look, Ma, no training wheels

2008-07-31T05:05:00.000-07:00

Innovative program teaches youngsters with special needs how to ride a bike
Thursday, July 31, 2008
By Doug Oster, Pittsburgh Post-Gazette

Zach Spanos rode his specially designed bike three-quarters of the way around the indoor track, then stopped. With a big smile, he flashed the thumbs-up sign to his mother, who watched from the balcony.

The 8-year-old from Mt. Lebanon is one of 40 children with special needs from the Pittsburgh region who took part in Lose the Training Wheels, a national program that uses innovative techniques to teach bike riding.

"These kids are able to ride a two-wheel bike -- they just don't know it yet," said Sharon Gretz, of Indiana Township, a coordinator for the Special Kids Network of Pennsylvania. Her job is to support new programs for youth who have conditions such as autism and Down syndrome.

She helped a group of parents organized by Zach's mom, Timme Spanos, make this event happen, along with the Children's Institute, which was the sponsoring organization for the Amazing Bike Camp held last week in the Iceoplex at Southpointe in Cecil.

"It's a rite of passage for young people to be able to do this," Mrs. Gretz said. "By being able to ride a regular two-wheel bicycle that looks just like their neighbor's bike, it helps them become more integrated and involved in the community with their peers."

Campers paid $175 to attend the camp. Some scholarships were available for children in need. Eighty percent of kids who participate nationwide are able to ride a bike independently by week's end. In some camps, every student will be riding by the end of the five-day program.

The children are taught on a bike equipped with special tires on the back and a handle that volunteers use to help steady the rider. The wheels are solid rubber and shaped to keep the bike upright, although they allow it to rock back and forth. Gradually, as the rider progresses and gets a feel for balancing, the wheels are replaced with progressively thinner tires. By the time the thinnest set of wheels is installed, most riders are on their way.

The teaching style of Lose the Training Wheels is what attracted Amy Guthrie, of Squirrel Hill, to the program. Her son Ben, 10, took off on the bike right away. "Hopefully, he'll continue to have that confidence," she said. "It's a really interesting process because it's so intuitive. Instead of teaching, the student discovers the balance."

Her family has struggled to get Ben to ride without training wheels, and she smiled as her competitive son actually was racing another boy around the track. "I like going fast," he said with a grin.

Sharon Colantonio held a clipboard, evaluating each of the riders to determine their progress. During the school year, she teaches at the School for the Blind in St. Louis, where she lives. For the past three summers, she has worked for Lose the Training Wheels as floor supervisor for the 75-minute sessions.

"When they make that transition to two wheels, their world explodes," she said. "They have opportunities to work with and be part of a peer group they have for so long been excluded from. It gives the family an opportunity to do something together."

Heidi Curtis is the mechanic and technician for the bikes, making sure everything keeps rolling. Ms. Curtis, 21, of Chicago, is an eight-year veteran of the program.

"You get them on those two wheels and it just amazes you. You'll see this huge change, and just seeing the smiles on their faces, that's what I get out of it."

Her favorite success story is about a boy who learned to ride during the week. The next day, his parents couldn't find him in the house, then he walked through the front door with breakfast for everyone from McDonald's. "His parents ended up locking up the bike at night," she said, laughing.

Some riders slowly worked their way around the track, getting a feel for the new bike, but others gave their volunteers a workout.

Cooper Quigley, 7, who lives in Chicago but will move to Peters next month, was very comfortable on his bike. "Because it kind of reminds me of races, like Speed Racer," he said.

The volunteer paired with Cooper, Laura Bradley, of Canonsburg, ran for the entire session, her face flushed after the workout. "Looks like I'm going to get in shape," Ms. Bradley, a special education major at California University, said with a laugh.

Cooper's mother, Laura, held back tears as she watched her son race around the course. "It was emotional. It was nice to see him having so much fun, doing really well and having some optimism that he's going to get this and have success."

Mrs. Spanos, who founded the parent group that brought Lose the Training Wheels to southwestern Pennsylvania, was overjoyed to see her son do so well riding around the track. "It was wonderful," she said.

Her son has a type of autism and is nonverbal, but words weren't needed as Zach smiled and pointed during the riding session. It's been a struggle to get Zach to take off his training wheels at home, and Mrs. Spanos believes learning to ride a bike on his own is an important step for him. "It's not something you just learn today," she said. "It's something that he can carry on for the rest of his life. Not only is it exercise, it's transportation, it's the social element; he's able to ride with the typical peers in his neighborhood."

John Liebrock, of McCandless, was on the balcony watching his 14-year-old son, Stephen, ride a bike longer than he ever had before. "We've tried to get him to ride a bike with his brother and sister, and he just won't do it," he said. Stephen is very athletic, participating in skiing, basketball, baseball, soccer and swimming. "You name it and he does it, except for riding a bike," Mr. Liebrock said.

He watched as Stephen rode for more than an hour, when normally he would stay on a bike for only two minutes. "It was wonderful ... he was having a good time, speeding right along," he said.

Stephen concurred, "I like it. I like going fast."

Katelyn Schultz, 15, of Crafton, has had a lot of trouble learning to ride a bike, according to her mother, Jeanine, who helped bring Lose the Training Wheels to The Iceoplex.

Katelyn is the only one in the family who can't ride a bike, so she rides along on a tandem with her dad.

"We've tried nonstop [to teach her]," Mrs. Schultz said. "Every time the ground becomes uneven, she becomes very frightened. We've always had an issue with the balance."

But Katelyn did fine on the specially designed bike, and her mother was thrilled. "It was very exciting," she said.

Her mother asked, "Do you think you'll be riding a two-wheel bike by Friday?" Katelyn smiled and nodded.

Every participant received a new Trek bike courtesy of GlaxoSmithKline Consumer Healthcare. The bikes were handpicked to custom fit each child.

Mrs. Gretz wants to make this an annual event, but she needs other parents to form a planning committee that will be mentored by this year's parents.

She wants every child who comes through the camp to go home with something more than the ability to ride a bike.

"If they feel 'I'm good, I can do things'... If they can come out with that, wow, we have given them a real gift."

For more information about the camp or how to help for next year's event, call Jane Keim at the Children's Institute at 412-420-2209.
Doug Oster can be reached at doster@post-gazette.com or 724-772-9177.

Lifewatch: Listening training

2008-07-31T05:01:00.000-07:00

DETROIT -- You hear what's going on around you, but are you really listening?

There is a new teaching tool that helps kids pay more attention to what's going on around them, and it can be especially helpful for kids with autism.

Some say, if you can change the way you listen, you'll change your life.

11-year-old Ian wants to be a skate boarding champ, and 14-year-old Jessica wants to be an actress.

But the question is, will listening training help them succeed?

9-year-old Ray is getting his first taste of listening training at the New Medical Foundation in Farmington Hills.

Enlisten is a computer based program that is supposed to train the ear to distinguish between language, music, and noise.

Ray's mom is hoping this will help him connect with people.

"I'm hoping because he will be a better listener he will be more aware of his environment. He'll make better eye contact he'll be able to work quicker," said Ray's mom.

Diane Cotman is the director of the New Medical Foundation.

She feels passionately about the listening technology after doing it herself. But seeing an autistic child break out of her shell really convinced her.

"In only 2 months she was able to hug her parents, and in the life of an autistic family that's life transforming," said Cotman.

The testing involves listening to a series of beeps, which helps determine your listening strengths and weaknesses.

After testing, the training involves weeks or months of listening to different sounds. There have been books written on listening training, but this is still very new.

Reported by Kristy Ondo

New York Autism Specialist Enlists Technology to Empower Parents of Children with Autism

2008-07-31T04:23:00.000-07:00

"People need to know that Autism is NOT a mental disorder that is genetic and therefore untreatable. It is a biochemical and neurological problem that can be treated, once you know where to look for the causes of the symptoms!" says Dr. Gruttadauria. This issue and more will be addressed during Dr. Gruttadauria's teleseminar series.

Plainview, New York (PRWEB) July 28, 2008 -- When it comes to Autism, Dr. Michael Gruttadauria is an expert. Not only does he run the Long Island Spectrum Center, a facility that treats children with Autism, he has two children of his own that were diagnosed.

Day after day, patients come from all over the NY Tri-State Area asking questions about their Autistic children...and what can be done to help them. As a clinician, he patiently consults with families and examines and treats their children. But each day, his frustration grows...frustration based on ignorance, misinformation and politics.

There is (and always has been) a lot of confusion as to what Autism and the Autistic Spectrum Disorders are. This starts with a significant problem with the way Autism is classified; Autism is considered a 'mental disorder'. Since it has been classified as such since the 1940s, most physicians learn little to nothing about it. Its classification further breaks down Autism to be an impairment in social interactions, repetitive behaviors and problems communicating. With these 'defining characteristics', it is no wonder that these children are placed into a structured special learning environment accompanied by behavior modification with little to no medical intervention.

"I understand Autism to be a biochemical and neurological problem that alters the way the brain and body develop, and eventually results in the social, behavioral and communication problems that these individuals experience. These characteristics are symptoms, and the result of a multi-system breakdown that went undiagnosed!"

Dr. Gruttadauria states that, "We have let an entire generation of children slip through our fingertips and it is time to mobilize and get them back. If the top three defining characteristics were; under-connected brain circuitry, chronic gastrointestinal dysfunction and underlying autoimmune/inflammatory processes, we would see a very different treatment criteria established for Autism! In fact, based on the research, these three things are the true problems of Autism which eventually lead to the cognitive impairments."

This message is no longer going to be limited to Plainview, NY. Dr. Gruttadauria, with the help of David Craig Marketing, will be launching a FREE teleconference live on August 14th, 2008 at 7 p.m. EST to teach parents around the world about what they can do to help their children.

Just go to www.JustAskDrMike.com to register for this FREE one of a kind event!

He will be sharing some important information regarding some ground-breaking news in the treatment of Asperger's Syndrome, Mitochondrial Disorders and Autistic Spectrum Disorder.

Dr. Michael Gruttadauria, Autism Specialist

Unique, web-based teleconference empowering parents to help their children!

Montessori education for autistic children

2008-07-31T04:04:00.000-07:00

Montessori education has been proven to be an effective method of learning for children with ASD.

Autism is a neurological disorder that affects the functioning of the brain. This developmental disorder starts in childhood. There are many reasons for autism. The specific cause for autism is still unknown. Autism is treatable but at present there is no cure. These children could be normalised to some extent with the Early Intervention Programme.

Children with Autism Spectrum Disorder (ASD refers to the whole range of 'autistic style' symptoms with their varying degrees and differing ranges of symptoms and is used to describe those mildly affected to the most profound disability. Autism, Asperger Syndrome, etc are subgroups of an Autistic Spectrum Disorder) have a developmental disorder, which results in them perceiving and understanding the world in a significantly different way. Unless we understand and respect these differences we cannot hope to intervene successfully. Early support for the child will reduce their developmental delays as they get older, which includes appropriate methods of education, therapies, support from the parents and doctors.

Educational intervention remains the primary source of help. Montessori education has been proven to be an effective method of learning for children with ASD. Various specially trained teachers use specially structured programmes that emphasise individual instruction used in the education of these children. Many teachers use a combination of several methods. Some teachers attempt to identify an individual student’s learning style and modify the curriculum to suit the child’s learning style. For example many children with autism are visual learners. Teachers will use pictures, charts and visual representation while teaching these children.

Material developed for children with learning disability are often helpful. Teachers also use concrete materials i.e. Montessori materials for students who learn through the senses and the physical touch. The Montessori Method often uses the multi-sensory approach effectively. Number symbols are introduced in a multi-sensorial approach; arranging concrete objects and then number rods, where it becomes more sensible for the child to relate to the increasing order of numbers, smaller/bigger numbers, equal number and so on.

Tracing of sand paper letters and numbers for tactile and motoric memory lends to use of numbers and words linked with pictures and letters copied under the drawn picture.

The Montessori classroom provides an excellent environment for these children to develop social and communicative skills, which otherwise they would find very difficult to learn. Many activities provide daily opportunities for social interaction. The teacher should be on hand to help the child’s interaction. For e.g. she may need to provide the encouragement and the words that the child needs to join an activity or verbal support in sorting out a conflict.

The interaction helps the development of social behaviour, the set of ground rules which all teachers and children are expected to adhere to. These rules are regularly discussed and practiced through games of grace and courtesy. And they are very important for children with autism who will take longer than most to learn social requirements. E.g. Turn taking skill, greeting, speaking slowly, asking to be excused, and maintaining physical distance while talking.

The Montessori language and grammar materials are heaven-sent for teachers of children with autism. The reading and writing of 'command cards', for example, shut the door, open the windows when demonstrated give children opportunities to watch others speaking and acting out, using appropriate actions, intonations and behaviours to express what they understand from the words on the cards. (The Montessori Elementary Material, Maria Montessori)

In a crowded and noisy group, children can be distressed, so the quiet and calm atmosphere in the class room allows these children to participate in more relaxed circumstances and at their own pace.

These children tend to follow a rigid routine becoming very distressed when these routines are disrupted.

Montessorians know it is good practice to keep a simple daily schedule. Prepare children well in advance for any change in routine. Routines such as school trips, cultural materials such as time lines of the school day, calendars and clocks all provide a concrete representation of time and therefore an accessible reminder of the child’s routine.

These challenged children don’t generalise very well and a technique used to accommodate this characteristic is by giving them opportunities to practice skills in real situations e.g. a real apple is preferable to a wax apple just as real stories and songs to develop concepts.

The multi age group and non-competitive atmosphere advocated by the Montessori system values and encourages all children, not just those with special educational needs such as autism. The curriculum is taught based on the development of each child.

Research indicates that children can learn to overcome some of their autistic tendencies. Thus Montessorians have the skills to help them to do so.

Autistic man at college graduation details hopes

2008-03-29T08:01:00.000-07:00

Autistic man at college graduation details hopes

By Allison Lopez, Jeannette Andrade
Inquirer

MANILA, Philippines--David Michael Lopez, 22, graduated on April 12 from the Lyceum Institute of Technology in Calamba City in Laguna, earning a degree in communications.

“I wanted to communicate,” Lopez said, explaining why he took the course.

He is one proof that being diagnosed as a person with autism spectrum disorder (ASD) is not the end of the world.

Only a trained eye can detect traces of autism in David. He looks like any other young man his age, but his life is a shining example of the triumph of perseverance and years of struggle against ASD.

ASD, as defined by the Autism Society of the Philippines (ASP), is a developmental disability that severely hinders the way information is gathered and processed by the brain, causing problems in communication, learning and social behaviors.

At age 3, David was diagnosed with ASD. But through years of education and parental care, he was able to overcome his problem. David told the Philippine Daily Inquirer that the early intervention of his parents was a key.

“There is no cure, but through education and training, autism can be treated,” he said at the close of the two-day national conference at the Philippine Columbian Association in Paco, Manila, on “A Life Journey with Autism: Hope After Diagnosis.”

For the ASP, which organized the conference, autism is not a tragedy. Ignorance is. The organization maintains that parents of children with autism should not despair, claiming that 1 in 150 children is diagnosed with ASD.

“There is no one specific cause of autism known yet. But while there is still no cure for autism, it is treatable. Many children with autism, especially with early intervention, make considerable improvements. Parents have to empower themselves to give these children a better life,” the group stressed.

Their vision: “ASP sees an environment that helps persons with ASD to become, to the best of their potentials, self-reliant, independent, productive and socially accepted members of society.”

Based on information from the ASP, autism “typically appears during the child’s first three years, is four times more common in males than in females, and has been found throughout the world in families of all ethnic and social backgrounds.”

“People with ASD live normal life spans and some of the behaviors associated with it may change and disappear over time,” said ASP.

The symptoms of ASD, usually apparent in toddlers, include:

* No pointing by one-year.

* No babbling by one year or no single words by 16 months or no two-word phrases by 24 months.

* Any loss of language skills at anytime.

* No pretend playing.

* Little interest in making friends.

* Extremely short attention span.

* No response when called by name or indifference to others.

* Little or no eye contact.

* Repetitive body movements such as hand clapping or rocking; intense tantrums.

* Fixation on a single object.

* Unusually strong resistance to changes in routines.

Dr. Alexis Reyes of the University of the Philippines College of Medicine, Department of Pediatrics, stressed in her discussion, “Early intervention works. We cannot wait until the symptoms are very obvious.”

She said that treatment within the developmental framework would be most effective to arrest the incidence of ASD, which has been reported to be steadily increasing here and abroad.

In his speech with matching PowerPoint presentation, Lopez recounted his struggles as a child that began when his parents did “lots of massage” on his neck thinking it would help him speak.

“They also put a spoon in my mouth, and had a faith healer work on me. After a week or two, I was talking like a parrot,” he said as the crowd laughed.

A special education program at Cahbriba, an alternative school foundation in Los Baños, Laguna, transformed Lopez.

“I learned new skills that changed my attitude,” said Lopez. It was there that he learned to eat properly, to wait for his turn, and to develop teamwork by joining sports activities.

He described high school in Cahbriba as “challenging, full of hard work and fun.” He recalled acquaintance parties with girls and “romantic evenings” at junior-senior proms.

A trip to Thailand, his first foreign visit courtesy of the United Nations Educational, Scientific and Cultural Organization (UNESCO) was a dream come true.

“I think I gained more self-confidence after this trip,” he said, as he related eating grasshoppers and haggling to buy a black Buddha image down from 600 baht to 300 baht.

Lopez said he was disappointed he failed the entrance exams of University of the Philippines and University of Santo Tomas. “But I did not lose hope in life,” he said.

He was accepted at Lyceum where he chose AB Communication because he “wanted to communicate with other people.”

A vigorous writer, Lopez also started blogging through accounts at Multiply and Blogger.

“Hopefully, I will land a job soon to help my parents, search for the right girl, get married and raise my family,” he said as the audience clapped loudly.

“The future is there waiting for me. I know it will be hard but I have walked those steps. The next step is really not that hard anymore … I will be an eye-opener to everyone to persevere, not to lose hope in case their child is afflicted with autism. I know that not everybody can be like me, but I know in their own time they can duplicate what I have achieved,” said Lopez.

Sm Supermalls support Autism Sectors

2008-02-22T03:27:00.000-08:00

The SM Supermalls Accessibility Committee, in cooperation with National Council for the Welfare of Disabled Person (NCWDP), Autism Society of the Philippines (ASP), Autism Pinoy (AP) and Philippine Association of Behavioral Analysis (PABA) conducted a seminar about autism at SM Mall of Asia recently.

The seminar themed "Recovering from Autism: An inspiring talk on a mother's fight to free her child from Autism" featured Ms. Annabel Stehli as the guest speaker, together with her daughter Georgiana. The seminar was attended by different autism sectors and parents of autistic children.

Ms. Stehli talked about how she was able to free Georgiana from autism when she discovered she is autistic. She was unable to speak and remained a silent child. She feared that Georgiana is destined for a desolate future. But, Ms. Stehli never gave up. She did everything to cure her daughter until she found this innovative therapy, Auditory Integration Training (AIT). After receiving AIT, Georgiana was able to change from autistic to a normal person. AIT really helped her to enjoy communication and to excel in school.

AIT corrects sensitivity through concentrated music therapy, which is played at different frequencies for 30 minutes, 2 times a day for 10 days. The frequency from music manipulates the brain and thus, it reduces painful hearing and allows the brain to understand the sounds better. Sounds are important in therapy because auditory, which is a sensory distortion, are common in autistic children and it is the cause of different autistic behavior. Not only autistic children can benefit from AIT but the other children who suffers from other learning and development disorder.

Ms. Stehli is the founder of Georgiana Institute. She is credited for promoting AIT to the world. She presented 2 books that depict stories about autism in the seminar. The book, "The sound of a miracle: A child's triumph over Autism" showed Georgiana's childhood and recovery from autism. Her other book, "Sounds of Falling Snow: Children's stories of recovery from Autism and related disorders" consists of personal stories of the parents whose children recovered from autism with the help of AIT.

Autism gets congressional attention

2008-02-22T03:24:00.000-08:00

CLOSE to half a million Filipinos suffer from autism, a highly inherited brain development disorder that impairs social interaction and communication, and causes restricted and repetitive behavior—all starting before a child is three years old.

Luth Lamela, training coordinator at the Autism Society of the Philippines, says the figure is an estimate based on hospital records, and could be much higher.

“It is increasing in numbers at an alarming rate,” she said, adding autism may be detected in a child as early as 18 months, but there is no known cure.

Their disabilities aside, autistics also suffer from a scarcity of doctors and specialist teachers who can help bring a semblance of normality to their lives, says Buhay party-list Rep. William Irwin Tieng.

He has vowed to come up with bills to address the lack of medical specialists and teachers for autistic students, saying the treatment for autism is very expensive at P400 to P500 an hour.

“No wonder many parents no longer bother to put their children under medication,” he said.

Tieng’s interest in the disability grew after discovering that one of his staff, Rommel Dumilon, has an autistic child, but he has failed to seek treatment for Nikko, 12, because he cannot afford it.

Tieng has promised to help Dumilon.

In a recent consultation with the parents and teachers of 50 autistic children in Quezon City, Tieng learned that the teachers have no materials to help them deal with autistic children.

And some parents have to wait six months up to a year to secure the services of medical specialists, Jan Pena, an official of the Autism Society of the Philippines, told Tieng.

Tieng vowed to do everything he could to help autistic children.

Earlier, he asked some business establishments to comply with the provisions of the Magna Carta for Disabled Persons, a law that provides people with disability 20 percent discount on medicines and medical services and on the services provided by hotels, restaurants and recreation centers.

Philippines ABA Project: Tigas Ni Paolo Dy

2008-02-13T19:07:00.000-08:00

Philippines ABA Project: Tigas Ni Paolo Dy
By Marisse Reyes

When I was told we would be viewing a TV commercial entitled “Project: TIGAS,” I was immediately intrigued. My fertile mind had conjured up different kinds of images and connotations. Before my imagination got the better of me, someone set up a laptop on a dining table at Hai Shin Lo, a Chinese restaurant along Pasay Road. The screen initially showed the black/white/gray blades of a fan rotating clockwise, & counting backward 5, 4, 3, 2, 1… You hear the cadence of a methodical thud, as though someone were tossing a ball against the wall. Then the camera pans across a pink and blue life-size dollhouse. If you observe closely, you would see the image of a young girl reflected on an antique life-size mirror. It was surreal, as though you were seeing a giant Alice in Wonderland. Something was not quite right. It tugged at my heartstrings to see a little girl banging her head on the wall. As if on cue, her mother gets up from the room next door. All you can see later is the mother’s hand, cupping the face of her child away from the wall, and then cuddling her. The voice-over says, “Wag nang matigas ang ulo. If you see signs of autism in your child, seek help and give them a chance at a better life. Call Project Embrace.” A logo shows a man and a woman embracing a child.

Project Embrace, a multi-media awareness campaign for autism conceived by Jimenez Basic Advertising, was formally launched recently. The officers of the Autism Society Philippines (ASP), headed by Erlinda (Dang) Uy Koe, and PABA, spearheaded by Shanti Kilduff, had a difficult task of selecting from the sixteen campaigns and twenty storyboards. Many volunteers stepped forward when Mon Jimenez, joint CEO of JIMBASIC, called in their Accounts and Creative teams to tell them about the pro-bono project. Which execution would make people more aware of the signs of Autism for families to accept their child’s condition and seek help? The storyboard for the TIGAS commercial was selected to launch the campaign. Nato Caluag and Manny Tirona of Out of the Box Productions volunteered to undertake the TV commercial’s production, which was directed by one of their Resident Directors, Paolo Dy. Optima pitched in for the post-production work. The string of volunteers was not about to end.

ASP President Dang Koe says, “If the advertising can just make people more understanding of children who throw tantrums in churches and show more compassion for the parents who are trying their best to manage them, the campaign would have done its job.”

Autism occurs once in 166 individuals, and is four times more prevalent among boys. In the Philippines, 250,000 to 300,000 are known to be afflicted with autism; however, only 5% are diagnosed and about 2% receive appropriate intervention.

How does one get across such an important message in a 30-second commercial, what’s more in 15 seconds? Director Paolo Dy says his brother Mark had had some on-the-job training in Autism, which brought the task to a more personal level. He had seen how some upper-middle class parents were usually in denial about their child’s autistic condition. Moreover, he could see that the kids really needed help. Because of the economy of story telling, the message had to be simple, compressed, effective, and straight to the point. Using visuals and audio, a well-cared for girl in a typical room relays the message: “This could be your kid. It doesn’t mean this normal kid couldn’t have autism.”

Twenty-six-year-old Paolo Dy is someone my 15-year-old son would probably call ASTIG, slang for impressive. Paolo holds a double degree in Management Engineering and Economics from Ateneo de Manila University. Nevertheless, he was obsessed with film, and decided to forego corporate life for that medium.

In January of 2004, Paolo won First Place on MTV Asia’s THE PITCH screenwriting competition in Singapore, with his screenplay, The Oracle of Avendale U. Paolo’s directorial work for Ayala Corporation has twice won Gold Quill Awards of Excellence for “Someday, Today” and “What Makes a Company Great?” These pieces were finalists in the 2004 and 2005 New York Festivals (Industrial Films Category).

Apparently, Paolo’s laurels have not given him real satisfaction. It comes to a point, he said, that you get a feeling of emptiness doing things for money. “I want to give something back…to do work which makes you feel good inside. And opportunities like this rarely come up.” Executive Producer Nato Caluag chimes in, “This is an act of gratitude for our blessings.”

Paolo Dy believes there are three things one can never have too much of: a passion for beauty, a thirst for excellence, and a supply of fresh 35MM film stock. We may not be cinematographers, directors, or screenwriters, but I have heard it said that we all have photographic memories. Some just do not have film. Perhaps the anonymous philosopher meant that God has given us so many gifts and talents, but some of us have not developed them.

Hyperbaric Oxygen Therapy Shows Promising results for Autism

2007-12-17T04:43:00.000-08:00

Autism is a mysterious disease-condition-behaviour disorder which causes a complex neurological disorder that typically occurs within the first 3 years of life, that results in developmental disabilities. Children will seemingly develop normally until 18 -24 months at which time an alarming regression in their development occurs and they may stop speaking and begin to lose interest in their surroundings and interactions with other people. Autism occurs two to four times more frequently in boys than in girls.

There are many theories as to the cause of Autism such as abnormal cerebral blood flow to areas of the brain, high fevers, birth trauma, brain injury, infections, reactions to vaccines (some reports implicate MMR) or lack of oxygen before, during or after delivery. Other theories suggest mineral deficiencies such as calcium, iron and zinc either in utero or after birth or fat and protein deficiencies.

The use of hyperbaric oxygen therapy (HBOT) for autism has been used in many countries worldwide. The results are varied and the individual reports from families and health professionals are encouraging. There are many testimonies on the net from families who have taken HBOT for their autistic child with varied results, mostly very encouraging.

HBOT increases the oxygen tissue concentration which increases cerebral blood flow to an area thus enabling the body to restore brain tissue metabolism of oxygen and nutrients, helping restoration of any areas which are suffering from hypoxia. New blood and oxygen begin to stimulate an area, especially one that has viable, recoverable brain cells that are "idling neurons" not knowing what to do instead of function normally. HBOT reduces swelling or excess fluid in the brain that might be pressing on centres of the brain which cause "confusion" in their function ability. HBOT has been demonstrated to exert positive objective changes from a safe, adjunctive therapy that has been overlooked by most healthcare professionals. Parents are encouraged to educate themselves on this new dynamic use of HBOT so they can make informed decisions for the future of their child.

The following study, testimony and article is just an example of the information one can obtain from the internet. The testimony is from one of our patients treated here at Reimer Hyperbaric.

Hyperbaric Oxygen Therapy (HBOT) adjunctive role in the treatment of Autism — Trish Planck, Hyperbaric Clinical Director
Autism is a complex neurological disorder that typically occurs within the first three years of life that results in usually severe developmental disability. Its incidence in the population is estimated to be 1 in 500 with a prevalence of boys to girls of 4 to 1. The ensuing effects of the disease result in severe impairment in areas of social interaction and communication and in some individuals self- injurious behaviour may occur.

Presently there are no effective cures for this disease as little is known as to the etioloby. Diet, psychotropic medications and other regimens have been tried with mixed and often disappointing results. Recently a therapy that has been in and out of favour has been shown to be of possible benefit in the treatment of this disease.

Initial results were objective improvements in a variety of diverse phenomenon. Each child demonstrated global reduction in aggressive behaviour. Parental summaries all stated substantial decrease in tendency to rage or exhibit tantrums. All children were reported to be easier to engage when the parent wished to initiate communication with marked improvement of direct eye contact. All three children enrolled in a school program displayed higher achievement with better performance and less instruction in classroom assignments. All children were improved with regard to understanding verbal commands. Reasoning abilities were noticeably enhanced in all individuals.

Clinical improvement was substantiated by pre and post treatment SPECT SCAN brain imaging which displayed enhanced neurophysiologic function in at least one of the members of this study.

The aim of hyperbaric oxygen therapy as an adjunct therapy was to evaluate the efficacy of the treatment in a series of 40 initial treatments, one or twice daily at 1.5 ata to 1.75 ata using a monoplace Sechrist chamber on 100% oxygen for a total time of 60 minutes per treatment. Patients were treated for 5 days consecutively with two days off. HBOT has been demonstrated to exert positive objective changes on a limited cohort of autistic children as evidenced by subjective and objective parameters. HBOT would seem to be useful and safe adjunctive therapy in the treatment of Autism.

B. M.
Autistic and Cerebral Palsy
Thirteen year old boy hearing impaired, mentally delayed and non-verbal. 3 Spect Scan images were taken of the brain at baseline, mid and after the 115th treatment:

Progress while undergoing hyperbaric oxygen therapy:
Major improvement in interactions with family members.
Plays with family pets.
Major improvements in understanding verbal commands.
Beginning to verbally communicate.
Responds to knocks at the door and answers the door in a normal manner
Major improvements in balance, especially when he starts to fall, he is able to regain his balance with a faster response. He cross patterns down the steps without holding on.
He is no longer raging/destructive of things in the home.
Sits through movies with more understanding.
Better understanding of public surroundings.
When music is played he responds in singing tones.
Hearing has improved and is no longer required to wear hearing devices.
Responds to things/awareness-like waiting for the school bus in the morning through the window.
Plays with various types of toys with more understanding.
Loves to work in the house and yard with Dad.
Mimics everything you ask him to do.
Is able to dress himself, is caring for himself in a independent manner.
Doing better in school with his assignments.
Happier child and smiles more.

Z. M.
Eleven year old boy with profound autism, who is non-verbal, and is still in diapers. Progress since undergoing hyperbaric oxygen therapy:

Major increase in understanding.
More eye contact.
Behavioural changes are easier to handle and function in public place, less aggressive, raging stopped and is much happier.
New ability to mimic simple vocal sounds-of major importance as pre-language sounds he makes have more tone and syllables.
Shows more interest and contact with his brother, increase in all interactions with others.
Accepts new people, places and situations easier.
Plays with a wide range of toys, instead of only one object.
Less sound sensitive.
Higher functioning in all ways.
Z. M. never noticed people let along mimic anything they did. He now mimics vocal tones and tuning forks and is more aware of sounds and things that people do. Parent gives credit to hyperbaric oxygen therapy.

L.S.
Autistic
Ten year old boy, high functioning with verbal skills and mimics.

Exhibiting receptive manner
Easier to engage.
Exhibiting great internalization of emotions.
Less tantrums.
Classroom achievement improved.
Completing work without re-direction and accuracy improving daily.
Easier to reason with especially in the home environment.
Open to re-direction with rages.
Great willingness to work and stay focused through all classroom assignments.
Much better transitioning, and flexible, open to variety of mediums with little assistance needed.
Much improved relatedness in sharing his emotions.

Abnormal Regional Cerebral Blood Flow In Childhood Autism
Takashi Ohmishi, Heroshi Matsuda, Toshiaki Hashimoto, Toshiyuki Kunihirok, Masami Nishidawa, Takeshi Uema and Masayuki Sasaki

Departments of Radiology, Psychiatry and Child Neurology, National Center Hospital of Mental, Nervous, and Muscular Disorders, National Centre of Neurology and Psychiatry, Kodaira City, Tokyo, Japan

Correspondence to: Takeshi Ohmishi, Department of Radiology, 4-1-1 Ogawa higashi, Kodairs City, Tokyo, Japan 197-0031

Neuroimaging studies of autism have shown abnormalities in the limbic system and cerebellar circuits and additional sites. These finding are not, however, specific or consistent enough to build up a coherent theory of the origin and nature of the brain abnormality in autistic patients. Twenty-three children with infantile autism and 26 non-autistic controls matched for IQ and age were examined using brain-perfusion single photon emission computed tomography (SPECT) with technetium-99m ethyl cysteinate dimer. In autistic subjects, we assessed the relationship between regional cerebral blood flow(rCBF) and symptom profiles. Images were anatomically normalized, and voxel-by-voxel analyses were performed. Decreases in rCBF in autistic patients compared with the control group were identified in the bilateral insula, superior temporal gyri and left prefrontal cortices. Analysis of the correlations between syndrome scores and rCBF revealed that each syndrome was associated with a specific pattern of perfusion in the limbic system and the medical prefrontal cortex. The results confirmed the association of (i) impairments in communication and social interaction that are thought to be related to deficits in the theory of mind (ToM) with altered perfusion in the medial prefrontal cortex and anterior cingulate gyrus, and (ii) the obsessive desire for sameness with altered perfusion in the right medial temporal lobe. The perfusion patterns suggest possible locations of abnormalities of brain function underlying abnormal behaviour patterns in autistic individuals.

5 year old boy treated at Reimer Hyperbaric (testimony)
We miss you !!!! Time has flown since we returned from Canada. We had such a nice time while we were there and will always be most grateful for your friendship and hospitality.

Things at home are going well, it took a little time to get settled in again, the children adapted very easily to the changes, although they miss all of you too. The changes in Christian are wonderful! He continues to speak much more often and in a "conversational" manner, which we are so thankful for.

For your records, I will give you a little background information on Christian and the changes that have occurred as a result of hyperbaric oxygen therapy.

Christian was 2 weeks overdue, and as a result, labour was induced. The procedure did not progress well and the labour and subsequent emergency C-section were very difficult. Christian was deprived of oxygen before & during delivery. The hospital records stated he suffered "mild to moderate hypoxia" and fetal distress. His apgars were ok and he did have a birth cry. He had suffered lung damage (double pneumothorax) as well as oxygen deprivation.

He lost a lot of weight in the hospital and we stayed 4 days. He was released and we went home - thinking everything was fine. Christian was breast fed and he did very well except that he seemed to have "colic", although it wasn't the normal colic, he never outgrew it (usually happens at 4 months). He was an extremely happy baby, even though he was in pain a lot. He never slept well and was awake most of the 24 hours of the day. At 4 months he suddenly developed "clenched fists" first one, then the other. They were severely clenched with thumbs out. He had an EEG - no seizures activity noted. He has a MRI, which showed no tumours or abnormalities.

The hands stayed clenched until about 16 months of age, where it sort of "wore itself out". He never developed proper use of his hands and fingers for fine motor. His "pointer" fingers are stunted in growth and usually icy cold.

Christian was never able to tolerate food, solid or other until I forced him to eat around 2 years of age. It was devastating to do so, but I had no choice. He had many sensory difficulties, noise was devastating to him, clothes were intolerable, smells made him gag. He didn't develop speech although he walked at 8 months, sat unassisted at 4 months and was running - fast at 1 year old. He was still very happy and friendly although as he got older his eye contact considerably lessened. He would connect for a very brief period and run away. In a group setting he would go to be on his own, preferably in a room by himself.

He was very physical and ran, climbed and jumped all the time. He was constantly in motion. He developed "eye ticks".

We were told that he had:

(1) a definite neurological disorder
(2) possibly autism
(3) possibly tourettes syndrome
(4) definitely sensory integration disorder
(5) definitely receptive (less) and expressive (more) language disorder

We were told - this is it, he will never be "normal" teach him sign language and get on with your life - don't try to "fix" him, it won't happen.

We never gave up on Christian and more importantly, Christian never gave up on Christian. Through much very hard work, tolerance, acceptance and love, Christian did progress. We found what we needed and we did it, simple as that. When he was 5, we decided he needed hyperbaric oxygen therapy and we were right, he did need it and these are the changes that occurred as a result.

(1) Although his sensory difficulties were already decreased, they did so even more after HBO- (we did 40 treatments). What occurred that is really wonderful is that his internal thermostat (which was defective especially in his fingers) has stabilized! His fingers are not icy cold anymore and his has completely stopped biting his nails and fingertips. There were always raw and bleeding. The tissue is healed and he doesn't bite them at all anymore. His hands look more normal and less stunted in growth. This is not wishful thinking, its really true. He also grew 1 whole inch from Dec. to Feb..

(2) His receptive ability is so much better. He understands consequences and can follow directions so much better. He doesn't seem "confused" like he did before.

(3) His expressive ability with language is outstanding. He actually talks on the phone and carries on a two-way conversation. His replies are no longer just one word. His desire to use language is much more pronounced. His teachers are amazed and very happy with the changes. They report that he is much better at "talking with" the other children and interacting in general.

(4) Although Christian was always a loving child, he is much more demonstrative now. he hugs and kisses his friends, spontaneously runs into Grandma's arms and tells her he loves her. He has more access into "our" world and is happier because of it.

Christian has overcome so very much in his life, many times thru very painful and difficult and frightening aspects. He has always remained loving, trusting and open. He deserved the chance to overcome his difficulties thru a non-invasive, pleasant atmosphere, where he doesn't have to work so hard. HBOT gave him this. We will always be so grateful for the opportunity to help him thru this method and grateful for the wonderful people who have allowed it to happen thru their hard word and dedication. That's you guys.

Sincerely,
J., G., C., & C

Activities for Autistic Children

2007-12-10T05:00:00.000-08:00

Parents, teachers, and other caregivers often get so caught up in educating and providing structure to the lives of autistic children that they forget that, above all, he or she is a child. Like any other child in his or her age group, your autistic child wants to have fun. While some activities may not be suitable for those suffering from autism, there are a number of fun games and activities for autistic children, many of which can get them involved with others or help them further develop motor or social skills while just focusing on having a good time.

Autistic children in the elementary school age range can benefit greatly from song. Even children who do not verbally communicate with words can learn to hum along or play simple instruments, such as tambourines or whistles. Using sounds that are repetitive and with educational lyrics helps autistic children learn school lessons but also gives them an outlet for some of the sensory stimulation they need, such as yelling. Play follow the leader with the instruments to help the children focus their attention and improve socialization skills.

Depending on how mature your child is, he or she may also not only be able to participate in regular childhood games, but greatly benefit from them as well. These activities, including tag and other games, can be learned more easily than you think. Stick with games in which the autistic child is not forced to have close physical contact with other children, as this may be hurtful for autistic individuals. Also, remember to play to your child’s strengths or what he or she wishes to learn. If he or she has a problem with yelling inappropriately, for example, encouraging him or her to be involved with a game of hide and seek may help curb this behavior.

Autistic children often wish to be included in games with non-autistic peers, and so this may help with the learning process. At home, focus on games that involve closer contact with trusted family members. For example, make it a game to get across the room without touching the floor. Perhaps the only route in some instances is to be carried. Remember that each child is different developmentally, so stay in tune with how challenging the activities should be.

As your child matures, he or she may want to be involved with organized sports. This should be encouraged, but choose your sport carefully. Golf, baseball, and other sports that do not involve strong personal sensory stimulation may be better for your child than something like tackle football. However, be open to all possibilities. Be sure the team’s coach understands your child’s disability and is willing to work with him or her.

At this later developmental stage, also continue encouraging learning activities. Sensory games work well to further teach these children, and as they mature emphasize the importance of appropriate behavior as you are playing these games. Using things like water balloons in games your child already enjoys is often as fun for children with autism. Also realize that an autistic individual has trouble seeing things from another’s point of view. Therefore, they may be less likely to enjoy games in which something must be kept a secret from another person (like go-fish).

Overall, you and your child need to grow together. Remember that although he or she has many special needs, sometimes your child needs to simply be a kid as well. Encourage play along with work, and realize that games and activities for autistic children may fulfill two key elements, socialization skills for life and learning to enjoy playing with their peers.

There are many more resources and information about diagnosing, controlling and treating Autism in -

Kids With Asperger's Syndrome: 'Bullied on a Daily Basis'

2007-11-02T06:56:00.000-07:00

High-Functioning Form of Autism Causes Social Awkwardness and Angst

Growing up, Daniel Corcoran was the odd kid at school. He wasn't slow, but his coordination was off, and he tended to obsess on certain subjects, like light bulbs and air conditioners. At the time, his preoccupations with random objects seemed quirky, but harmless.

But when Corcoran entered middle school, his quirks were not accepted by many of his classmates and his life became a social nightmare filled with name calling and other cruelties.

Corcoran is now out of middle school and a sophomore at Ramapo College in Mahwah, N.J. His uncomfortable encounters persist, especially after taking the dangerous step of "coming out," as he puts hit, with his condition. Corcoran has Asperger's syndrome, and his decision to announce the disorder yielded mixed results from his peers.

Asperger's syndrome is a form of high-functioning autism, characterized by social isolation and eccentric behavior during childhood. "It means my brain is different," Corcoran said.
Twelve-year-old Noah Orent also has Asperger's, and like Corcoran, he's mild-mannered and began to get bullied at an early age.

"I was just merely called 'Game Boy freak' or stuff. There was one kid that was the worst. He just called me names and he was not nice," Noah said. "He was mean -- mean to the bone. I was so mad that I couldn't let out my anger. I was just like hiding it. I just didn't feel like being at that school anymore."

'Bullied on a Daily Basis'

Noah is not alone, and some school systems are working on a solution to the social angst that affects many with the disorder. Jed Baker, a psychologist who works with many kids with Asperger's, found out the situation for kids with the disorder was very severe.
"In some areas, there have been reports of 90 percent of kids with Asperger's are getting bullied on a daily basis," he said.

Baker consults for the Milburn New Jersey Middle School, which has stepped up its focus on children with Asperger's and other conditions. His primary mission is to build a healthy social network of these kids. At Milburn, he partners children with Asperger's with volunteers from the student body.

High-Functioning Form of Autism Causes Social Awkwardness and Angst

"Building social skill groups, where we're creating an atmosphere of an accepting peer groups so these kids don't feel isolated," Baker said. "They have people who are at least friendly to them."
Working with what were once called the "uncool kids" has become a cool thing to do, and kids like Noah don't get picked on. "I was learning about basically just how to make friends and stuff," Noah said. "I mean, at my old school I never had many friends."

"When we moved, I was so happy to be finally away from them. I felt better," he said. "So then I started here and now I'm having a lot of friends. I like the school, the staff, even Dr. Baker. And I'm having a good time."

'Trying Too Hard'

As for Daniel Corcoran, it's too late to go back to middle school, but he's grown content with where he is now.

"I couldn't be happier, you know," Corcoran said. "I could be, but I mean this is, I haven't felt like in this amazing frame of mind since who knows when. It seems like all dreams start to come true."

And while he has grown up in many ways, he still sometimes has bad days. Women and romance now perplex Corcoran as much as the bullies who once tormented him, and the Asperger's is sometimes to blame.

"The thing that I realized -- I have to stop doing what's called trying too hard," he said. "Trying to force a conversation with a girl even if she's not fully interested in talking, asking too many questions, showing signs of being nervous, maybe."

Corcoran said he was building the confidence that was often absent in those with Asperger's.
"As long as I stand my ground, and I am who I'm supposed to be, and I get to love myself for who I am -- others are really really going to love me too," Corcoran said. "I really do think some people are going to like me. And I'm convinced I'm going to meet somebody really special one day."

If Corcoran can picture that day, so can those who have known him all his life. Fitting in while standing out -- it isn't always easy for anyone but some have to work harder to get there.

Autism: A gift of hope, courage and inspiration

2007-09-23T00:46:00.000-07:00

By Jeanne Tan Te

It is my sincerest hope to continue inspiring parents who are facing the same dilemma that we've been through, that I share another story from the very courageous and giving lady, Awit Dalusong

THE emails I received in response to my article about my child's autism were very encouraging.

It is my sincerest hope to continue inspiring parents who are facing the same dilemma that we've been through, that I share another story from the very courageous and giving lady behind www.autismpinoy.com, Awit Dalusong:

"A few weeks before giving birth to Ethan, I was busy surfing the internet trying to update myself on the latest research on how to take care of a newborn. When, suddenly, I was directed to a website with these words on the front page, "God gives special children to special parents." Immediately, I turned off the computer and said, "Well, I don't think I want to be special."

As fate would have it, two and a half years later, I was once again in front of the computer, trying to figure out why my son lost his language and why he has failed to make eye contact with anybody including his mom and dad. It really started with an innocent question from a friend. She asked me, "How does Ethan call his Ate Colleen?" I answered, "He doesn't really call her anything. He had about 60+ words but after his second birthday, his words suddenly disappeared. I think it's because he's been watching too much TV." That night, I got a text message from her with these words, "not to alarm you or anything but please have Ethan checked right away because it's unusual for a child to lose his language according to my uncle who is a psychologist." I deleted her message right away. Fear had hit home, and it hit me hard.

The Autism Society's website confirmed any mother's worst nightmare. They enumerated fourteen behavioral signs and symptoms that may indicate autism. If the child manifested seven signs, then he needed to be diagnosed immediately. It was funny how my husband, Edward, and I desperately omitted some signs so Ethan wouldn't meet the seven signs or symptoms. I vividly recall saying, "I think he only has five signs, six max. Maybe he doesn't have autism after all." But, deep down, I knew the writing was on the wall. For the next several days, I never felt more scared, never felt more desperate and never thought I had so much tears to shed. We just knew he had autism. The diagnoses from the development pediatricians were mere formalities.

"Why my son?" was the question I asked myself everyday while I cried myself to sleep. Ethan crawled, lifted his head, sat, walked, uttered his first word exactly when he was supposed to, if not ahead of most kids his age. At eighteen months, he had uttered more words than his sister. His repertoire included the names of the secretaries in his Dad's office including complex words that a 3 year old may have difficulty pronouncing. He was a very happy boy with a constant smile plastered on his chubby little face. I fondly recall the Christmas before his second birthday, Ethan was dancing to the tune of the latest dance craze. He also gamely helped me show off his extraordinary verbal ability by perfectly identifying all the words in the flashcards. Everyone was really impressed with Ethan that I carried those flashcards wherever we went. Ethan (and I) enjoyed the applause and admiration. Then, out of the blue, autism entered our house, like a thief in the night it snatched my son's soul away from me. At two years old, our son virtually disappeared.

From a bubbly toddler, Ethan transformed into someone I barely know. He walked in circles, opted to play on his own, and the most devastating of all was that he seemed to have forgotten who his parents were. He had a blank look on his face all the time, our boy seemed lost, oblivious of our presence...

Edward had to kick me out of my depression and told me to "get to work because Ethan won't get well with you just sitting down." I called the Behavioral Management for Autistic Children (BMAC), Inc. (thank God for their website) and told them I wanted my son to undergo Applied Behavior Analysis (ABA) therapy ASAP.

Edward and I went to two developmental pediatricians and both confirmed that Ethan was indeed in the Autism Spectrum. We went back to the internet in search for hope. After a few days, we stumbled upon the website of the Autism Research Institute (ARI). ARI's theories on the biomedical approach in treating autism offered a new lease on life for our little boy. Incredulous as we were, our skepticism was still there. But it also offered us hope, and for a parent of a special kid, hope is all you could ask for. Prior to discovering the existence of BMAC, ABA therapy and the biomedical intervention of the Defeat Autism Now (DAN) movement, I felt so hopeless. I kept picturing Ethan ending up in an institution. My nightly prayer was for God to not let me lose patience in taking care of my boy for the rest of his life. In fact, one developmental pediatrician told us point blank, "Your son is autistic, and he'll forever be autistic." From that moment, we vowed to prove otherwise.

A month later, we went to Hongkong to meet with a DAN doctor who helped us get started with Ethan's biomedical and dietary intervention. If we were to help Ethan, Edward and I felt that we should address the behavioral and biomedical issues related to autism to ensure success. We felt we owed it to Ethan to explore every possible treatment available to help him recover. The DAN doctor told us that along with the ABA therapy, Ethan's biomedical interventions will put him on a faster track to recovery.

Ethan's first day of ABA was on June 28, 2004. I remember how frustrating the first session went. Ethan practically cried for the first two hours. I thought he could have cried longer had he not exhausted his energy from all that kicking, screaming, and running away. As the days rolled by, Ethan behaved better. For that alone, living with a child with autism seem to be more bearable.

However, Ethan's lack of expressive communication was still a very deep concern for everyone in the family (especially his grandparents). So, in the summer of 2005, I flew to Canada and the United States to attend a couple of workshops on Verbal Behavior spearheaded by Dr. Vince Carbone.

When I came back home, I was very eager to share what I learned from the workshops. I was ecstatic that the staff was excited to incorporate Verbal Behavior in Ethan's program. I have been blessed to work with a team that was very supportive in my endeavors to strengthen my son's program.

Ethan recently turned 4 years old. He knows all the uppercase and lowercase alphabets. He knows his numbers from 1- 20. He easily identifies all the shapes, colors, body parts and animal sounds. He has about 300+ receptive vocabulary. He knows the concept of opposites. His fine motor skills have dramatically improved to indicate that he now has the ability to concentrate on tasks. He feeds himself during mealtimes with great scooping control. Our greatest achievement by far is that Ethan can now sight read common words. But, Ethan is still a work in progress. He still has very limited expressive language. Most of his words are just approximations. His social skills need to be addressed. But there's no denying that he's had a major leap in his cognitive skills. A year and a half ago, he was a boy who didn't know any nursery song. Fast forward to today, Ethan can fill in words to some of his favorite songs. The point is, there is light at the end of the tunnel. The tunnel might be long and winding, but that light is a guide for me to persevere more for my son.

The year 2005 has been good to Ethan. Ethan got a coveted slot at International Montessori School, a school with a well-established inclusion program. The directress, Ms. Judith Gonzalez is very supportive with Ethan's dietary and biomedical intervention. She has been an answered prayer to a mother like me. The icing on the cake is that the school uses ABA techniques during Ethan's pull out sessions with his SPED teacher. Ethan's socialization skills practically blossomed overnight. He now enjoys being around other children. A far cry from several months ago when he opted to be left alone and showed no interest to be part of a group.

I am often asked what keeps me going despite the fact that my son has autism. The answer is simple, I have fully accepted Ethan's condition but I also haven't given up hope that I will recover him. Don't be afraid to tell people that your child has autism.

Upon confirming that Ethan was in the Autism Spectrum, I was afraid that my friends would pull away from me. Believe it or not, I never felt more loved and more understood by the people I cared about the most after I revealed Ethan's condition to them. Also, it's important to study. The best way to fight autism is to face it head on with courage, conviction and research. Nobody has all the answers to your child's condition. Parents are in the best position to decide what they feel is best for their children. I am currently doing some volunteer work for the Generation Rescue group. I also moderate an online support group for Filipino families affected by autism. Every week, I receive several emails from parents from here and abroad who wish to learn more about helping their children. Nothing excites me more than reading emails from parents inquiring about autism and recovery.

Yes, Ethan is a special child. He has made significant steps but he is still on the proverbial long road to recovery. Every now and then, my six year old daughter innocently assures me that "Ethan is on the road to recovery but there's just traffic, Mom." I still hope that Ethan will attend a good University, borrow my car to go on dates and get married someday. Edward still hopes that his little boy will be a world-class athlete. Yes, we still have high hopes for him and we will never give up until we find the solution.

They say that God gives special children to special people. We truly believe that parents of special children are some of the greatest caregivers in the world, the uber parents as they say. It's a tough honor, but it surely is worth living up to. Every child with autism deserves nothing less."

Disadvantaged kids learn skills, have fun at Cradle Beach camp

2007-08-20T13:28:00.000-07:00

At Cradle Beach, fostering uncommon abilities
Disadvantaged kids learn skills, have fun at Cradle Beach camp
By Louise Continelli - News Staff ReporterUpdated: 08/19/07 8:48 AM

They may have cerebral palsy or autism or cystic fibrosis. But the disabled and disadvantaged kids who arrived home from Cradle Beach camp on Saturday morning had at least this in common: they all had fun.

And that’s what they did best at the Town of Evans camp.

Nine-year-old Casey Burnett of Buffalo said he wants “to be a fireman” — he was impressed by a camp visit by firefighters and a fire truck, complete with siren.
Shawna Lauby, 10, of Buffalo, noted the camp “was safe, respectful and responsible. And I loved swimming.”

Cradle Beach Executive Director Cara Stillman pointed out that “the diversity of the children was amazing. Some of them said they made friends with kids they wouldn’t have usually talked to.”

The camp also promoted unity through state-of-the-art equipment like the adaptive challenge obstacle course, designed for kids ages 6 through 16 who function at different physical and cognitive levels.

All campers were able to participate in an obstacle-course activity, regardless of level of disability.

But campers returned with more than memories of a good time.

Camp leaders, Stillman said, were committed to instilling values like integrity, honesty and responsibility in their young charges.

Some of the youngsters deal with epilepsy, motor difficulties, heart defects, Down syndrome, spina bifida, speech delays and neurological impairments. Cradle Beach is the only summer camp program in the country to integrate children with and without disabilities “as far as we know,” Stillman said.

The camp’s director said she is certain campers left with higher expections for their lives, greater “friendship skills,” sensitivity and compassion. The majority were better able to solve problems without fighting, and to resist negative peer pressure.

“They did well with resolving conflict,” Stillman added. They were also more comfortable with people of different cultural, racial and ethnic backgrounds.

“Kids get more responsible and independent,” she said.

Camp is not cheap. It costs $1,000 to send one child to Cradle Beach camp for 10 days. Of the approximately 800 kids who attended this summer, most came from families who can’t afford to pay this fee. This means Cradle Beach relied on the generosity of supporters, so children with special needs could enjoy nature, campfires, arts and crafts.

lcontinelli@buffnews.com

Understanding and Teaching Friendship Skills

2007-07-26T13:38:00.000-07:00

Understanding and Teaching Friendship skills

Tony Attwood and Carol Gray

One of the central diagnostic criteria for Autistic Spectrum Disorders (ASD) is a failure to develop peer relationships and clinicians examine how the child conceptualises and demonstrates friendship skills. Normal childrens' conception of friendship changes over time and it is notable that children with autism and Asperger’s Syndrome often have an immature and unusual definition of friendship. The research literature on the concept of friendship indicates there are four levels between early childhood and adolescence. The four levels are summarised as follows:

Level 1: Approximately 3 to 6 years
The child recognises that games and activities cannot happen unless there is an element of turn taking but there is an egocentric or simple conceptualisation of friendship in terms of defining a friend as someone who gives you things or someone you play with. Friendship is based on proximity and physical attributes and when asked Why is _____ your friend? The typical response is He lives next door!

Level 2 : Approximately 6 to 9 years
There is an increasing understanding of the concepts of reciprocity and mutual rather than one-way assistance. The likes and dislikes of the other person are more likely to be considered with friendship based on how closely each friend matches their self interest, for example, in liking similar games. There is also a new awareness of the motives, thoughts and feelings of others. When asked Why is _____ your friend? the typical response is He lets me play the games I want to, Because she comes to my party and I go to hers or She's nice to me.

Level 3 : Approximately 9 to 13 years

The child is more aware of other peoples opinions of them and how their words and actions affect the feelings of others. They are more careful in what they say and do because it may be hurtful to someone. Friendship can be based on shared experience or common interests and helping becomes more valued than simply playing together. There is a greater selectivity in choosing friends, a gender split and a greater durability in the relationship. There is increased value placed on personal attributes such as trust, loyalty and keeping rather than breaking promises. When asked Why is _____ your friend, the typical response is He sticks up for me and helps me with my maths homework, She enjoys doing the things I like to do or I can talk to them and they listen.

Level 4 : Adolescence to adult

Peer group acceptance becomes more important than the opinions of parents, there is a greater depth and breadth of self disclosure, desire to be understood by friends and recognition that there are different types of friendship - from acquaintances to close friends with autonomous interdependence. When asked Why is _____ your friend, the typical response is or Because we think the same way about things.

When children with an ASD are asked What makes a good friend?, clinical experience suggests that a common response is a list almost exclusively of actions that a friend should not do, eg. bully or tease you, which indicate that the child has experienced a disproportionate level of negative experiences in their peer relationships. They know what a friend should not do but have little idea what they should do.

Social Play with friends
The social play of children with an ASD is often more immature than their peers and includes unusual characteristics such as having less motivation to seek friends, autocratic qualities and being less able to demonstrate the wide range of behaviours that we use as an index of friendship skills. The traditional school curriculum pays little attention to the development of friendship skills yet these skills are the foundation of abilities that are highly valued by adults in their professional and personal lives, namely having teamwork skills, the ability to manage conflict and having successful personal relationships. A recent study examined the perceived quality of life of high functioning adults with autism and Asperger=s Syndrome and only one variable, Ahours spent with friends@, was able to significantly predict the scores on any of the quality of life measures . These adults valued and desired friendships more than anything in their lives, yet few had the ability to maintain acquaintances, let alone friends. As children we were never directly tutored in friendship skills, so how do we start teaching someone who appears to lack the intuitive ability we take for granted?

The starting point is an assessment of the friendship skills the child demonstrates and the skills that are conspicuously absent. We have standardised tests to measure cognitive, linguistic and movement skills but at present we do not have standardised assessment instruments for friendship skills that can be applied to children with an ASD. However, a review of the research literature on the range of social behaviours used as an index of friendship skills with ordinary children can produce a primitive checklist of friendship skills for children with Asperger Syndrome. The key social behaviours to be examined are as follows:

Entry Skills: How the child joins a group of children and the welcome they provide for children who want to be included in their activity.

Assistance: Recognising when and how to provide assistance as well as seeking assistance from others.

Compliments: Providing compliments at appropriate times and knowing how to respond to a friend's compliment.

Criticism: Knowing when criticism is appropriate and inappropriate, how it is given and the ability to tolerate criticism.

Accepting Suggestions: Incorporating the ideas of others in the activity.

Reciprocity and Sharing: An equitable distribution of conversation, direction and resources.
Conflict Resolution: Managing disagreement with compromise, and recognising the opinions of others. Knowing not to respond with aggression or immature mechanisms.

Monitoring and Listening: Regularly observing the other person to monitor their contribution to the activity and body language. Their own body language indicating interest in the other person.
Empathy: Recognising when appropriate comments and actions are required in response to the other person=s circumstances and the positive and negative feelings of others.

Avoiding and Ending: The appropriate behaviour and comments to maintain solitude or end the interaction.

The next stage is to use behavioural and cognitive strategies to maintain and improve friendship skills. If the skills outlined above occur, then it is essential that such behaviour is recognised and rewarded. The authors would add that the praise should also be directed at the other child, as they need encouragement to maintain their friendship, especially as such children are often not among the most popular children in the class or neighbourhood. It is also essential that the child=s social play is monitored by an adult to identify when the cues for specific friendship skills occur but the child has not recognised them or is unsure how to respond. The child=s attention is drawn to a specific cue or opportunity and verbal prompts and instruction given as to what to do. This is an application of the traditional behavioural techniques of task analysis, prompting, shaping and reward. Children with an ASD are unusual in that they can be taught what to do in a given situation, but they may not understand why the action or comment is appropriate. They need to learn the theory as well as the practice. Conventional programs to encourage friendship skills with ordinary children make assumptions that may not be applicable to children with an ASD who have significant problems with Theory of Mind Skills, Affected Relatedness, Central Coherence and Executive Function. However, Social Stories can be used to assist the child to acquire the necessary cognitive mechanisms. The following is an example of a social story for a grade one child who needs to learn about the concept of assistance in friendship. It is designed to understand what 'help' is

Sometimes Children Help Me

Sometimes children help me. They do this to be friendly.

Yesterday, I missed three math problems. Amy put her arm around me and said, Okay, Juanita She was trying to help me feel better.

On my first day of school, Billy showed me my desk. That was helpful.

Children have helped me in other ways. Here is my list:

I will try to say, Thank you! when children help me.

How I Can Help Children in My Classroom

My name is Juanita. Sometimes, children help me. Being helpful is a friendly thing to do. Many children like to be helped. I can learn to help other children.

Sometimes, children will ask for help. Someone may ask,"Do you know what day it is today" or "Which page are we on?" or maybe something else.

Answering that question is helpful. If I know the answer, I can answer their question. If I do not know the answer, I may try to help that child find the answer.

Sometimes, a child will move and look all around, either under their desk, in their desk, around their desk. They may be looking for something. I may help. I may say, "Can I help you find something?"

There are other ways I can help. This is my list of ways I can help other children:

Children like to be helped.

Other techniques can be used to encourage friendship skills such as a friendship diary, matching individuals and support groups.

For younger children, a friendship diary can be used to record occasions when the child demonstrated friendship abilities and other children were particularly friendly towards the child. It is interesting that one of the criteria ordinary children use for defining what makes a good friend is someone who has similar interests. However, the special interests of the child with an ASD may not be interesting or popular with their peers.
One option is to identify other children who have the same interest and introduce the two children to each other.
An example is a child with Asperger=s Syndrome who has a special interest in ants, a solitary pursuit for him as no other of his acquaintances at school shared his enthusiasm and knowledge of this topic. However, by chance, another local child who also has Asperger=s Syndrome, was also interested in ants. When they were introduced a genuine friendship occurred with joint expeditions to observe and collect ants and the sharing of information and resources on these insects. It was notable that each child=s friendship skills with other children appeared hesitant and contrived, yet when the two met, their natural friendship skills were far more fluent and spontaneous. This technique can be facilitated by local parent support groups having a registry of children and their interests, pen pal registries, special interest clubs and Internet chat lines. An extension of personal matching is the development of local support groups run by adolescents and young adults with Aspergers Syndrome. These groups hold regular meetings and excursions to destinations that may not be valued by their ordinary peers, such as museums and transport facilities. These groups provide a social life outside school, and the opportunity to meet someone who shares the same experiences and values, the basis of many friendships for adultsOne of the issues raised during social skills workshops for young adults with an ASD is recognising when someone appears to be friendly but may actually be taking advantage of their social naivety, and how to identify and respond to the different types of personality. Tuition may be required in identifying hidden motives, seeking a second opinion and how to manage situations of potential abuse. It can also be necessary to teach the strategies of maintaining friendship, coping with grief when the friendship ends and overtures of friendship that are not reciprocated. The authors have also noted that children with Asperger=s Syndrome appear to lack an ability to perceive and describe the personality characteristics of others and themselves. When asked "What sort of a person is _____?" their responses are predominantly descriptions of physical attributes such as height or what a person does, eg. a teacher. What is missing is a wide lexicon to describe the different types of character. When personality characteristics are nominated, a common response is "nice and kind", and synonymous words to this one characteristic. The children appear to have a one dimensional approach to characterisations. Other children can quickly "read" a person's character and adapt their behaviour accordingly. They know which children to avoid and are more proficient in choosing who complements their own personality. To teach such skills in young children with Asperger's Syndrome the authors advocate using the popular Mr. Men stories by Roger Hargreaves. They describe a range of personality types such as Mr. Grumpy and Mr. Nosey and Little Miss Chatterbox..
Another activity is encouraging the child to choose an animal that represents someone's personality. Older children can use adaptations of literature studies to identify the indications of personality type and how to respond to such people. It is important to help the child understand their personality and to recognise the type of person they are likely to get along with and who might become their friend

Dispelling Autism Myths: Why Curation Isn't The Answer

2007-06-23T03:05:00.000-07:00

Every now and then, I run across someone that hasn't gotten the word that autism is a spectrum condition. Although science has pretty much shown conclusively that autism comes in varying flavors, from the most disconnected, nonverbal, helpless autistic all the way up to people that are socially inept, obsessive, but generally capable of living life normally, there are people that refuse to accept this.

These people refuse to accept that there is anything to autism other than disability, helpessness, dependence, and pain in those who care for them. This would be a contemporary view twenty years ago, but it isn't now. Unfortunately, there are well-known "experts" in the autism community that continue to promote and spread the myth that autism is nothing but people who don't communicate and who can never live without a full-time caretaker. Bernard Rimland is one of these dinosaurs. Despite the fact that he wrote the foreword for Temple Grandin's first book, acknowledging that she was autistic, he continues to insist that people that can talk, live independently, and get college degrees cannot be autistic. Temple Grandin, in case you do not know, travels around the world speaking at autism conferences, lives independently, and has a doctoral degree.

These people invariably find fault with what I have written here on a number of points. First, they almost always deny that I am autistic. It is standard procedure for a person arguing with an autistic person about matters of autism to question whether that person is really autistic (apparently as a means of reducing his credibility). I have gotten this so much that it is almost like waiting for "the other shoe to drop" once someone disagrees with me. If I finally convince them that I am what I claim to be, I usually hear that I am an exception. Temple Grandin's an exception. Donna Williams is an exception. All of the other people like me that have web pages are exceptions. So very many exceptions running around there are! I have made the acquaintance, online and offline, of hundreds of "exceptions."

The truth is that there are more "exceptions" than these people know. While they can handily deny our existence when it suits them, we're out here, and we're just as much a part of the autism equation as any low-functioning autistic. While they want to define autism only as a horrible, child-stealing enemy that must be eradicated (which leads them to ignore or marginalize autistics that can communicate), the fact is that people like me are no less a part of what autism is than the individual they are personally trying to cure. And invariably, there is always one person that defines what "autism" means for them.

The people that desperately need autism to be this horrible foe, rather than a condition that one can live and be happy with, even be proud of, are very resistant to the idea that there are a lot of "exceptions" like me around. If they took a unified view of autism, including ALL autistics, not just the ones that meet their outdated and self-serving definition, they would have to admit that people like me might have something valuable to offer them, in terms of our opinions and experiences. They don't want to do that, because people like me overwhelmingly do not support the "Cure Autism Now" type agenda. Given that just about every autistic adult is steadfastly opposed to Cure Autism Now and similar groups, the anti-autism people must keep us marginalized and irrelevant, or else they would have to admit that there is something wrong with their agenda when nearly all of the autistics that can communicate oppose the groups that are trying to eradicate us out of "compassion."

One person I argued with recently suggested that no one is out to cure people like me; the cure is needed, she said, for people like her son, who are nowhere near as high-functioning as am I. That would be a reasonable excuse if there were a cure that could be applied only to adult autistics, who could choose for themselves not to take the cure. However, there is no such cure, and given what neuroscience has revealed about the structural brain abnormalities that come with autism, it is abundantly clear that there is not going to be a cure that will help someone who is already autistic (which is NOT to say that any autistic person, low functioning or otherwise, is hopeless, or that they should be left in a state of neglect. Please be perfectly clear that when I say there is no cure, I mean that there is nothing that will make an autistic person into a normal one. In no way am I suggesting that there should be no attempts to improve the lives and the functioning level of any autistic child. I'll get more specific about that later in this article).

There are over a billion neurons in a human brain, and they are connected to each other with an intricacy that boggles, no pun intended, the mind. Curing an autistic person would mean making the brain structures that have developed differently become more normal. It would mean thickening the cerebral cortex in the posterior portion of the brain. It would mean trimming millions of "extra" neurons in the gray matter of the cerebrum-- and this would have to happen without disturbing the intricate balance of neurons that results in human consciousness. The corpus callosum, the amygdala, the cerebellum, and several other brain structures that are typically underformed compared to an NT (neurologically typical; in other words, normal) brain of the same age would have to have the proper amount of neuronal tissue added... again, while maintaining the delicate balance that results in consciousness. This is something that would be much, much harder than fixing spinal cord injuries, like the one that paralyzed actor Christopher Reeve, and while progress is being made for injuries like that, it is much different thing entirely to reconfigure an entire human brain. It would be akin to taking a chimpanzee's brain and reworking it so that the chimp thinks and acts like a human-- all without killing the chimp!

This is a very hard thing for many parents of autistic kids to accept. They want their kids to be normal, and they want to believe... they want to believe that there is a cure. They think that with enough vitamins, ABA, Floor-Time, secretin, GF-CF, chelation, et cetera, they can make their kid normal. Those things may have their uses, but they're not going to make an autistic into an NT. Regardless, there are quasi-experts going around speaking at conferences, all but claiming that they can fix an autistic kid (but it'll cost ya!). I ask that you do some research into neuroscientific discoveries about autism and brain construction before believing any of these claims of curation. These are physical differences in the way neurons are laid out in the brain... nothing is going to change that layout. That is what a real cure for autism would require.

What this means is that a "cure" for autism is more likely to take the form of autism prevention. The most likely scenario for this is to develop a DNA test for a predisposition toward autism, and to have parents selectively abort fetuses that show the genetic markers for autism. I have a big, big problem with that. I have the genetic markers for autism. People with AS (Asperger's Syndrome) have the genetic markers for autism too, as is proven by the coexistence of autistic and AS children in monozygotic siblings (identical twins, triplets, et cetera), which share exactly the same genetic code. I might not exist if my mother's amniotic fluid had been tested for genetic markers for autism when she was pregnant with me, and if some well-intentioned doctor told her horror stories of what autism could do to her life. A lot of wonderful people, some that have contributed immensely to society, may never have existed if there was a genetic test for autism.

So, when I argue against a cure, I am really arguing two points, corresponding with the two paragraphs above. First, I am arguing against trying to force an autistic kid to act normally through behavioral intervention, because that's not actually curing him. No matter how the kid is trained to act, the brain in his head will be thinking autistic thoughts. Forcing him to act like an NT when he is not an NT is a very stressful way for him to live, and it usually causes a host of problems once the child grows up. I get to see autistic adults that had this stuff inflicted upon them as kids all the time, and a lot of them end up attempting or committing suicide when they realize that they are still the defective people that their parents and their tutors had told them they were if they were not normal. While some normality acts learned in this way can fool normal people into thinking the kid is now normal, the person who has to carry on the act is never fooled. Ask any one of my kind that has had to live behind this sort of mask... ask if they ever thought they were normal now. We know we are not normal... it takes way too much conscious effort and hard work to pull off the act of being normal for us ever to think that. It would be like someone asking a normal person to act like an autistic person, mimicing autistic movements, speech patterns, interests, et cetera, for the rest of your life, with no breaks, ever. This is a horribly cruel thing to do to someone, even if the intentions are good.

The other point I am arguing is that someone who is already developed and who is unable to live independently is not going to be cured. That person will always be autistic. Now, I must quickly add that this does NOT mean that the person will always be helpless and requiring of care. If the goal is to help the person learn to take care of himself, communicate his needs, or live independently, I would say those are wonderful, laudable, reasonable goals. Now, for someone that thinks that autism equals helplessness, this next point is hard to accept. You can help the autistic person to do those things without curing the autism. I can't emphasize that enough, because this is the one point that so many people refuse to understand. They have to let go of the incorrect definition of autism as a condition that completely prevents learning and development of skills that will allow someone to live independently. With that definition, the only way to help an autistic person to be independent is to eliminate (cure) the autism, which leads them to latch onto the "cure at any cost" mentality that ends up doing more damage to their kid than they can ever imagine. The fact that there are _many_ autistics that have life skills, that can communicate, that can live like real people, should be proof that you do NOT need to cure the autism to give the person a chance at life. Curing the autism is not reasonable or possible, but that does not mean that there is no hope.

Unfortunately, some people are still so wedded to the idea that autism equals horrible disability that they want to wipe autism out entirely. The aforementioned woman who told me that no one was out to cure people like me eventually admitted that she wanted to wipe autism off the face of the earth. The truth is that this is what all of the CAN people really want. They hate autism; to them, it is the name of a stealthy foe that took away the kid they wanted and replaced it with one they did not want. Few would ever admit not wanting their kid, but this is really the way it is. The dissonance this creates is a source of tremendous guilt in these parents, and that causes them to take often ridiculously dangerous chances in the name of defeating this foe that has caused them so much pain. This is a very personal battle for them... they see autism as a demon that stole their dreams of a normal child, and they want to kill that demon at any cost.

That attitude is understandable, but horribly counterproductive. The "war" mentality that this attitude causes is very stressful to the kid, and stress is a terrible thing in the life of any autistic. It causes a lot of the autistic behaviors to get worse, impedes learning, and is very unpleasant to the autistic. If the parents would call off the war and recognize that autistic kids CAN be educated, they CAN develop and mature, they CAN go to college and get a job and live like a real person, maybe they would not be so driven to defeat the autism. That is the kind of CAN that I like... the one that says that no one is hopeless. I, and people like me, are proof that autistics can grow up and be able to live as adults. You can work within the autism to help the autistic kid grow and mature, but you have to quit looking for a complete cure that is going to suddenly make things the way you wish they were. Ultimately, the feverish search for a cure, and the refusal to accept anything but complete defeat of the autism demon, are a form of denial. It's denial that this is what your child really is, that autism is what he is more than what he has. For the sake of the child, they have to drop the attitude that autism is some kind of parasitic demon that fights to destroy the life of the child and (by proxy) his parents.

Autism is not at all like a bacterium that invades a body, and which must be killed for there to be any improvement in the condition. That is obviously how many people see autism, though; they talk of how their child "became" autistic, as if that is when he caught the bug that causes autism, and they talk of a cure, as if it were some kind of antibiotic that will kill the germs. The cure for which they seek is something like penicillin, in the bacteria analogy. This is a very flawed way to look at autism, one that is borne of ignorance. To someone that does not understand how deep the neurological differences run, it seems plausible that there is something, some enzyme, some hormone, some nutrient that is missing, some simple thing that, once discovered, will get rid of the autism, like water on a fire.

Autism is what someone is, not what someone has. It is not a disease, with a specific external cause and a specific remedy. It is a condition that is permanent. It is also a condition that does not automatically mean that the person will live a life of disability. The goal should be to help the autistic person develop into the best adult he can be, not to cure the autism. The former works with the child, building him up; the latter works against the child, tearing him down. Doing the former means dropping the grudge against autism and accepting that it is not a thief that stole your child... it is simply a name for a very different kind of child, one that, at birth, has just as much potential as any other child. Remember that it is not your child that has the grudge against autism-- it is simply the way he is; he has no concept of autism or normality. It is the parent that has the grudge, and that can make her fail to realize that the war on autism is something she wants, not something the child wants or needs. It is very hard for such a parent to accept that the war on autism is not in the best interest of the child; she is so blinded by her hate of this autism demon that she is absolutely convinced that fighting that demon that has abducted her child, no matter how long the odds, no matter what the collateral damage may be, is the right thing to do for her child. Living with the demon is unfathomable to them. They cannot believe that the child can ever grow as a person and mature with that demon still attached.

The bottom line is that it is very possible for autistic children to grow into self-sufficient autistic adults. Much of the time, the emphasis the parents have is on curation of the autism, and that does not work; the autism always remains. That approach is the one that was tried while most of the non-self-sufficient autistic adults were growing up. It is silly to keep butting one's head against an immovable rock; trying to cure the autism is akin to that. Instead of trying to destroy the rock with the head-butting, why not work with the rock and just go around it, leaving it in place? That approach works (and is in fact the approach used by the newer and most effective autism therapies you may read about), and if the focus of research was on learning new ways to parent autistic kids, rather than curing autism, it would work much more often.

A child's brain is far from being fully developed at birth. All children, autistic or normal, are born nonverbal, helpless, and unable to do the slightest thing to take care of themselves. While the basic structure of the brain, which determines (among other things) whether a child is autistic or not, is already complete at birth, the majority of the neural connections, the ones that dictate the ability to communicate or think, have not been formed yet. The brain is simply too complex to be described entirely in DNA, so the neurodevelopment process is guided by patterns of stimulation in the existing neurons in the brain. If the child is normal, there are no real barriers to development; the child thinks and looks and learns almost as if by osmosis. As he does, the new neurons that are formed as his brain grows are placed according to how the child uses his brain. If he thinks in a logical manner, more neurons are added to the part of the brain that does the logical thinking. If he hears sounds, the part of the brain that processes sound is built. When the child begins to realize that some vocal sounds have meanings, the part of the brain that processes language begins to develop. (maybe because they believe that autistics are emotionless and cannot form bonds with anyone, With an autistic child, there are often barriers that prevent these things from happening.

Sensory issues may present such a jumble of stimuli that the autistic infant cannot make sense of any of the things he sees or hears. He can't form a concept of what the world is, and that means he can't think and wonder and be curious about it. If he hears language as a jumble of disconnected sounds, the part of his brain that processes language is never stimulated. His brain's new neurons are not placed in a manner that enhances function, but instead in a random way that reflects the manner in which his faulty senses perceive the world. So while his parents are trying various stressful therapies to rid the child of the "disease" of autism, or worse, are not trying to bond with, engage, stimulate, or educate their child because someone irresponsibly told them that the child was a lost cause, or because they just don't know what to do with this unusual child), his brain is rapidly developing in a random, haphazard manner that does nothing to enhance his level of functioning in the future.

The primary task, in the first few years of an autistic's life, should be to engage the child's brain, to get the sensory net to develop enough to begin presenting a coherent view of the world, so that the child can begin to form a concept of the world. He'll still be autistic, but he might just surprise you with what he is able to accomplish, if you can get his brain engaged early enough. That's what I mean by working with the autism, not trying to defeat it.

I am not suggesting that working within the autism to raise the child is easy; it's not. Raising a normal child is not easy, and raising an autistic child is harder than that... sometimes much, much harder. I wish it were not so, but with the limited knowledge we have of autism, it is likely to be this way into the foreseeable future. I'm also not suggesting that my way is a guarantee that any given autistic person will grow into a self-sufficient adult. There are no guarantees in life. I am telling you that you stand the best chance at having your child grow into a self-sufficient autistic adult if that was your goal from the beginning.

It is pretty obvious that what we know about raising autistic children is minimal indeed compared to what we know about raising normal children. Even so, what is known about raising autistic kids now is a huge improvement over the state of affairs only ten years ago, and the prognosis has improved accordingly. Right now, the biggest thrust in autism, and in autism research, is to find a cure. That's just more head-butting against that rock, isn't it? Imagine how much we could learn about helping autistic kids to become functional autistic adults if that (helping autistic kids become functional autistic adults) was the focus of the research, and of the parents whose demands and money drive that research.

Some people want to insist that almost all autistic kids will grow into adults that will never be self-sufficient, and because of that, autism must be cured. Even if it were true that most autistic kids will never grow into self-sufficient adults, and it is not, it still would not mean that curing the autism is the best thing to do. Maybe the thing to do would be to find a way to help autistic kids grow into self-sufficient adults... from a research perspective as well as from a parental perspective. Is that really so hard to understand?

Faces of Autism - Part III

2007-06-06T04:46:00.000-07:00

It was once a rare diagnosis, but now, Autism is more common than Multiple Sclerosis or childhood Cancer. With one in 150 children being diagnosed with Autism, there's a very heated debate about what's causing the increase. The reality is no one really knows for sure. It's a very controversial issue and there are dozens of different theories.

"I used to think my son's spirit was taken from him, but I actually think it's still there, it's just hidden away, it's just locked in a door that we are trying really hard to break down,"

says Shelly Cowgill, of her son Jonah. The door closed on 6-year-old Jonah Cowgill's life just a few months shy of his second birthday. Shelly says, "He was my first, earliest crawler, first to sit up, he did every milestone on time, he walked on time. He had about a 40-word vocabulary and then it just, kind of went away."

In a matter of a week, Jonah's world fell apart. "He stopped talking, he starting walking around in circles, I couldn't get him to make eye contact with me. He would make strange movements with his eyes and we knew something was wrong."

Luckily, Jonah's pediatrician acknowledged and diagnosed the Autism quickly, but the answers and explanations the Cowgill's would get from doctors in the coming years, weren't good enough for them. Shelly says, "You get to that point, okay, I've done everything mainstream medicine has asked me to do; and so as a mom, as a parent, you start looking into other things."

The Cowgill's are now in a fight to get back the son they once knew. It's turned into almost a full-time job for Jonah's mom. "Some of the things we're doing with our son, now in treating his Autism, I think we really feel is probably the medicine of the future for treating kids, at least with the type of Autism that Jonah has," says Shelly.

The causes of the dramatic rise in Autism cases is at the center of much debate, but many believe genetics play some role. Dr. Pam Hanson from Franciscan Skemp says, "We know there's a genetic propensity to Autism and that, if one child has it, there's a higher chance another child in the family will have it. We also know that there's probably some abnormalities within the structure of the brain."

But, with Jonah's type of Autism, the Cowgill's are convinced, it's something more than just genetics. A so-called perfect storm for a catastrophe. Shelly says, "I think genetics kind of loads the gun, but I think environment kind of pulls the trigger. For someone, like Jonah, who was fine for the first 18-20 months of his life, and for it to just disappear like that, you kind of have to wonder, okay, what happened here, something happened here, something went wrong."

One of the most controversial arguments is whether the mercury-based preservative and known toxin, Thimerosal, which used to be used in childhood vaccines, is responsible for the increase in Autism cases. Dr. Hanson says, "I think Thimerosal, which has been taken out of vaccines for young kids, has been looked at so thoroughly, that everyone's pretty much debunked that as a cause."

Shelly says, "I'm not anti-vaccination by any sense of the word, but I'm kind of thinking, we need to be watching what preservatives we're putting in vaccinations and I think we need to take a close look at the vaccination schedule."

Dr. Hanson says, "Are other vaccines involved? It's still an ongoing study to look at those."

Tests on Jonah have found detectable levels of several metals in his body, including mercury and lead. Both of the Cowgill's are dentists, who work with industrial chemicals, often, so is there a connection there? They've now turned to bio-medical therapies, such as Chelation, to treat Jonah's Autism. It's a process that pulls the metals out of his body. Jonah's dad, Terry, says, "I'm the skeptic, she'll tell me a theory and I'm a skeptic, but after you see some from separate doctors, separate labs, and the same results, there's something there."

Another of the potential factors being studied is diet. Some people believe removing gluten and casein proteins from their child's food intake has helped them improve, although, it didn't do much for Jonah. Regardless, the Cowgill's are not giving up their fight. Shelly says, "Some people might think that's crazy. I can live with that, the one thing I can't live with is not doing everything I can to help my son."

Dr. Hanson says, "I think when you have a disorder that's not curable that conventional therapies don't work miracles for, then I think looking at alternative therapies, that work, sometimes just as well as our medical therapies, is understandable."

Shelly says, "No matter how he turns out, we will absolutely love him and be fine with, however, whatever happens in the end, but it's still, I feel, as his mother, it's my job, our job to make sure that we help him reach his potential."

It is true Autism is recognized and diagnosed more, but most experts also agree, that alone doesn't account for the huge increase in the number of cases.

Faces Of Autism - Part II

2007-06-06T04:33:00.000-07:00

If you lined up 10 Autistic kids in a room, no two would be alike. Every Autistic child is different. Two or three in every 10,000 children have a high-functioning form of Autism, called Asperger's Syndrome. They usually have major difficulties in social situations and have unusual interests and behaviors. A La Crosse woman shares her first-hand experience growing up with Asperger's.

"I always had this sense that I was different from the other kids. I had thoughts and feelings, I suspected, that none of my peers thought the way I did," says 23-year-old Nicole Baumgartner. Nicole has lived her entire life on the outside looking in. From as early as she can remember, something just wasn't right. "I could sense there was something different about me. I didn't know what it was, I didn't have a name for it. Most of the time, I felt like a freak or I imagined, maybe, I was from another planet or something."

Nicole's first memory of feeling alienated and different from the other kids was on the playground at preschool. "Looking down from this climbing structure at everyone else who was in my class, sitting there watching them with this oversized baby doll in my arms, just watching. I'd physically separate myself to perhaps mimic the mental separation I felt." The loneliness and feelings of isolation continued into elementary school, but it would still be years before her disorder was diagnosed. "I did like to play a lot by myself with a small group of friends. I'd sit on a tree stump and daydream in elementary school during recess." By high school, it had become easier for Nicole to hide in the shadows. Her survival strategy, make other kids her textbook. I kind of became a nature show host, almost, I'd observe others and just stay out of it and see what they did. They were animals to be observed, in a way, to learn, okay, what does a so-called normal person do in this situation. I kind of styled myself an outcast, an outsider, I was really into heavy metal and I'd hang out with other like-minded people. I channeled myself, almost completely, into academics, because I knew that's where I could do well, it's where I felt safe."

After years of slipping through the cracks, doctors finally diagnosed Nicole with Asperger's Syndrome, her sophomore year of high school. "I did some research on my own on the Internet, and books, and the more I read, the more I was like, 'oh yeah, I did that when I was younger, I did that, I still do that.' I experience a lot of mixed senses. I can feel music, as if it was like a physical touch. A lot of people with Asperger's, I've read, tend to be very frank and say exactly what they're thinking, whether it's socially acceptable or not. People will say something to me and if I like the sound of a particular phrase or something, I'll repeat it out loud after them and they'll say, 'I just said that' and I'll be like, 'yeah, but I want to hear it from my mouth.'"

Nicole is now using her disability to help others in the same or similar shoes. After graduating from Viterbo, in December, she landed a job working with other Autistic kids as a classroom assistant at Chileda. She calls herself a voice for the voiceless. "I'll notice one of the students doing a particular behavior and I'll be like, 'yeah, I would do that, too', if I didn't feel like I had to constrain myself to so-called normality. When I finally, kind of, came out of the closet, so to speak, with my disorder, a lot of people said, 'well, I didn't know that, I wouldn't have guessed it' and I said 'that's because I'm very good at pretending to be normal.' There's a lot more of us, so-to-speak, than you may think, you might even work or live next to someone who perhaps has Asperger's. Be sensitive and understand that people with disabilities are people too."

Unlike other forms of Autism, Asperger's is usually not diagnosed until adulthood, because of a lack of standardized criteria to diagnose it. It was a social worker at Nicole's high school who first suspected Nicole had it.

Faces Of Autism - Part I

2007-06-01T03:52:00.000-07:00

The numbers are eye-opening. One in 150 kids are now being diagnosed with Autism, with the disorder affecting four times more boys than girls. This so-called explosion of new cases is not only puzzling, it has many very concerned.

The 1988 movie Rainman was, for many of us, our first look inside the life of a person with Autism. It brought a lot of attention to a certain type of the disorder, but unfortunately, also created some misconceptions. Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, often accompanied by extreme behavioral challenges.

t's a Spring afternoon at the Reuteman house in La Crosse and 8-year-old Sam is on the move. Just looking at Sam, you probably wouldn't notice anything unusual, but hidden behind the smile and laughter is a world only Sam knows. The first of four kids, Sam came into the world showing almost immediately he was a fighter. Sam's mom, Callie, says, "Colicky, they labeled him colicky right away, very spitty, when we fed him, he wouldn't keep anything down."

Looking back now, Sam's parents believe that was one of the first signs something was wrong. Sam's dad, Paul, says, "They originally labeled or diagnosed it as just colic and said he'll grow out of it and not to worry about it."

Sam did eventually grow out of it, but he still struggled. He had a tough time expressing what he wanted and when his speech started developing, it became very repetitive. Callie says, "You hear a lot about regression in kids. Sam always was delayed, he didn't actually roll until he was 8 months old. The doctor kept saying he's a big baby, then he didn't crawl until he was 11 1/2 months."

The thought of Autism did cross the Reuteman's mind in those early years, but it was never a real consideration. Paul says, "There were times, when I had thought about it, but yet, we were continually reinforced by other people, don't worry about it, right now, he's just delayed, that's common."

It wasn't until Sam was about 4 years old that doctors finally diagnosed him with Autism Spectrum Disorder. Most kids are diagnosed by age 3. Paul says, "Some of the medical professionals were a little bit hesitant to label him, just because they were afraid of that permanent label on his record." The diagnosis, as strange as it sounds, was actually a relief. The Reuteman's finally knew what was wrong with Sam and now they could do something about it. Paul says, "It's a very, very difficult pill to swallow the first time you hear your son or daughter may be Autistic, but it's so important to get the diagnosis, so you can move on and carry on with the appropriate therapies."

Diane Hietpas, Director of Special Education at Chileda, says, "You may see some sensory issues, where kids are processing sensory information a little bit differently, so they may be very sensitive to sounds and they may want to cover their ears. Socially, they prefer to play alone and they do very, very repetitive things. Play with Lego's, but build the same tower every time."

Sam still has many of the traits and behaviors associated with Autism, but with therapy, he's made incredible progress over the years. He's now a second-grader at Cathedral school in La Crosse, learning right along with the other kids his age. Sam's teacher Amy Gleason says, "It's teamwork, without the teamwork, without the parents, without all the other teachers, art teacher, music teacher, without us all working together, my students, it wouldn't work."

Sam is more like an 8-year-old boy, now, than the Reuteman's every thought he could be, and they hope more people will take time to understand Sam's world. "We don't necessarily know where he's going to be and I don't think society knows where he's going to be, either, and I think that's going to be a huge issue in the next 10-15 years," says Paul.

Callie says, "Life goes on, we've learned so much from Sam and our kids have learned so much from Sam, and I absolutely love every ounce of him and what he does for us, and I feel we've been dealt this hand, and you know what, you go with it."

Early detection and intervention is key with Autism. It's much easier for the brain to adapt to differences in the early stages of development. Sam works with a therapist a couple of times a week, for a few hours at a time, which is crucial for him to continue to control some of those behaviors associated with his Autism. But, one of the big issues is also cost. These therapies are very, very expensive and insurance companies typically don't cover them.

Potty Training Children with Special Needs

2007-05-25T06:50:00.000-07:00

While parents often complain of difficulty potty training their children, for most families, potty training is a fairly easy experience. Even when there are problems or children show signs of potty training resistance, usually they will eventually become potty trained.

However, this is not always the case for children with developmental delays or disabilities, such as autism, Down syndrome, mental retardation, cerebral palsy, etc. Children with special needs can be more difficult to potty train.

Most children show signs of physical readiness to begin using the toilet as toddlers, usually between 18 months and 3 years of age, but not all children have the intellectual and/or psychological readiness to be potty trained at this age. It is more important to keep your child's developmental level, and not his chronological age in mind when you are considering starting potty training.

Signs of intellectual and psychological readiness includes being able to follow simple instructions and being cooperative, being uncomfortable with dirty diapers and wanting them to be changed, recognizing when he has a full bladder or needs to have a bowel movement, being able to tell you when he needs to urinate or have a bowel movement, asking to use the potty chair, or asking to wear regular underwear.

Signs of physical readiness can include your being able to tell when your child is about to urinate or have a bowel movement by his facial expressions, posture or by what he says, staying dry for at least 2 hours at a time, and having regular bowel movements. It is also helpful if he can at least partially dress and undress himself.

Children with physical disabilities may also have problems with potty training that often involve learning to get on the potty, and getting undressed. A special potty chair and other adaptations may need to be made for these children.

Things to avoid when toilet training your child, and help prevent resistance, are:

beginning during a stressful time or period of change in the family (moving, new baby, etc.)

pushing your child too fast

and punishing mistakes.

Instead, you should treat accidents and mistakes lightly. Be sure to go at your child's pace and show strong encouragement and praise when he is successful.

Since an important sign of readiness and a motivator to begin potty training involves being uncomfortable in a dirty diaper, if your child isn't bothered by a soiled or wet diaper, then you may need to change him into regular underware or training pants during daytime training. Other children can continue to wear a diaper or pullups if they are bothered, and you know when they are dirty.

More Potty Training Information

Once you are ready to begin training, you can choose a potty chair. You can have your child decorate it with stickers and sit on it with his clothes on to watch TV, etc. to help him get used to it. Whenever your child shows signs of needing to urinate or have a bowel movement, you should take him to the potty chair and explain to him what you want him to do. Make a consistent routine of having him go to the potty, pull down his clothes, sit on the potty, and after he is finished, pulling up his clothes and washing his hands.

At first, you should only keep him seated for a few minutes at a time, don't insist and be prepared to delay training if he shows resistance. Until he is going in the potty, you can try to empty his dirty diapers into his potty chair to help demonstrate what you want him to do.

An important part of potty training children with special needs is using the potty frequently.

This usually includes 'scheduled toileting' as outlined in the book 'Toilet Training Without Tears' by Dr. Charles E. Schaefer. This 'assures that your child has frequent opportunities to use the toilet.' Sitting on the potty should occur 'at least once or twice every hour' and after you first ask, 'Do you have to go potty?' Even if he says no, unless he is totally resistant, it is a good idea to take him to the potty anyway.

If this routine is too demanding on your child, then you can take him to the potty less frequently. It can help to keep a chart or diary of when he regularly wets or soils himself so that you will know the best times to have him sit on the potty and maximize your chances that he has to go. He is also most likely to go after meals and snacks and that is a good time to take him to the potty.

Frequent visits during the times that he is likely to use the potty and fewer visits to the potty at other times of the day is another good alternative. Other good techniques include modeling, where you allow your child to see family members or other children using the toilet, and using observational remarks. This involves narrating what is happening and asking questions while potty training, such as 'did you just sit on the potty?' or 'did you just poop in the potty?'

Even after he begins to use the potty, it is normal to have accidents and for him to regress or relapse at times and refuse to use the potty. Being fully potty trained, with your child recognizing when he has to go to the potty, physically goes to the bathroom and pulls down his pants, urinates or has a bowel movement in the potty, and dresses himself, can take time, sometimes up to three to six months. Having accidents or occasionally refusing to use the potty is normal and not considered resistance.

Early on in the training, resistance should be treated by just discontinuing training for a few weeks or a month and then trying again. In addition to a lot of praise and encouragement when he uses or even just sits on the potty, material rewards can be a good motivator. This can include stickers that he can use to decorate his potty chair or a small toy, snack or treat. You can also consider using a reward chart and getting a special treat if he gets so many stickers on his chart.

You can also give treats or rewards for staying dry. It can help to check to make sure he hasn't had an accident between visits to the potty. If he is dry, then getting very excited and offering praise, encouragement, and maybe even a reward, can help to reinforce his not having accidents.

Another useful technique is 'positive practice for accidents.' Dr. Schaefer describes this as what you should do when your child has an accident and wets or soils himself. This technique involves firmly telling your child what he has done, taking him to the potty where he can clean and change himself (although you will likely need to help) and then having him practice using the potty. Dr. Schaefer recommends going through the usual steps of using the potty at least five times, starting when "the child walks to the toilet, lowers his pants, briefly sits on the toilet (3-5 seconds), stands up, raises his pants, washes his hands, and then returns to the place where the accident occurred." Again, although you are trying to teach him the consequences of having an accident, this should not take the form of punishment.

While it may take some time and require a lot of patience, many children with special needs can be potty trained by the age of 3-5 years. If you continue to have problems or your child is very resistant, then consider getting professional help.

What is Lovaas Method

2007-05-21T18:02:00.000-07:00

What is the Lovaas method?

The Lovaas method is an early intensive behaviour therapy approach for children with autism and other related disorders. It is also known as the UCLA (University of California Los Angeles) Programme by Dr Lovaas, Home-Based Behavioural Intervention and UCLA Model of Applied Behavioural Analysis as developed in the Lovaas Institute for Early Intervention.

It is based on extensive clinical experience and research carried out over more than 30 years by psychologist Dr O. Ivar Lovaas, in the USA.

In the late 60s and 70s Lovaas worked with institutionalised, non-verbal children who had been diagnosed as autistic. He concentrated on verbal communication using the strategies of applied behavioural analysis.

At the time Lovaas' work was criticised by colleagues advocating the psychodynamic approach, because most of the children lost their verbal skills when the programme ceased and they returned to institutional life. However, those who moved back with their parents, who wanted to be informed about the treatment, did much better. This led to an increased importance of the role of parents in the education process.

Lovaas went on to work with younger children, aged two to four, in their home setting with parents involved in the treatment to see if he could ensure that the new skills learned were maintained. Children received 40 hours a week of structured input on a one-to-one basis from trained students whose work was closely supervised by Lovaas and his staff.

The results were published in 1987 and caused great interest as up until then there had been no studies to show that behavioural strategies could present such positive results.

Lovaas compared three groups of 20 children:

1. The experimental group of children who received 40 hours a week of treatment.

2. A first control group who received 10 hours behavioural treatment together with a variety of treatments from other sources such as those provided by small special educational classes.

3. A second control group who received no behavioural treatment.

Lovaas described his findings from the experimental group as follows:

a) A recoverable group of individuals, who, following intervention, no longer demonstrated the characteristics of autism. Lovaas claimed that 47% of children who worked 40 hours at home per week achieved normal functioning by the time they successfully entered full-time mainstream education at the age of seven.

b) An intermediate group (40%) who made substantial progress but who still displayed autistic characteristics. Many of them retained language difficulties or an intellectual disability.

c) A small number (10%) who received little or no benefit from the intervention.

The results also showed that those children who followed the programme for two years or more gained on average 30 IQ points compared with the other two groups who made no IQ gains.

A follow-up study carried out by McEachin, Smith and Lovaas in 1993 indicated that the majority had maintained their gains into adolescence. They appeared to be functioning normally and at blind interviews with clinicians were said to be indistinguishable from children with no history of autism.

What does the programme involve?

Lovaas and his colleagues recommend that treatment should begin as early as possible, preferably before the child is five years old and, ideally, before the child reaches three and-a-half years. This is necessary in order to teach basic social, educational and daily life skills. It can also reduce stereotypical and disruptive behaviours before they become established.

The home-based programme consists of 40 hours a week of intensive therapy. Results of Lovaas studies show the importance of maintaining these hours in order to maximise the benefits to the child. The therapy is on a one-to-one basis for six to eight hours per day, five to seven days a week, for two or more years. Teaching sessions usually last two to three hours with breaks. The intensity of the therapy means that there is usually a need to establish a programme team which normally consists of at least three persons. These people have all undergone a full training programme.

Family participation is a very important element of the treatment as researchers at the time found that skills learned in clinics and special classrooms would not transfer to a home setting unless there had been parental involvement in the child's treatment programme. All skills are broken down into small tasks that are achievable and taught in a very structured manner and accompanied by lots of praise and reinforcement. Examples of reinforcers are small bites of food, play with a favourite toy, social rewards such as verbal praise and hugs and tickles. Gradually food and other artificial reinforcers are replaced, if possible, by more social and everyday reinforcers. Aggressive or self-stimulatory behaviours are reduced or replaced by ignoring them or by introducing more socially acceptable forms of behaviour.

The intervention programme progresses very gradually from teaching basic self help and language skills to teaching non-verbal and verbal imitation skills, and establishing the beginnings of toy play. Once the child has mastered basic tasks, the second stage teaches expressive and early abstract language and interactive play with peers. In more advanced stages of the intervention the child can be taught at home and school.

Behaviour modification

Behaviour modification is based on the fact that pleasant consequences can promote good behaviour and unpleasant consequences, such as punishments, can reduce unacceptable behaviour. In the 60s and 70s aversive procedures had been used by behaviour analysts of all sorts when alternative treatments had failed and if the behaviour of the client was dangerous to himself or others. For this reason behaviour modification has been criticised. In his early work Lovaas defended its use in situations when a child used self-injurious or self-stimulatory behaviours. He contended that aversive procedures constituted no more than 1% of the typical interactions in his programme and that they are not generally required after the first few weeks.

The UCLA project no longer employs physical aversives and there is more of an emphasis on positive reinforcement procedures.

What are the benefits?

Lovaas and his colleagues believe that with early intervention a sizeable minority of children with autism and related disorders are able to achieve normal educational and intellectual functioning by the age of seven. For those children who do not achieve normal functioning it is claimed there are usually substantial decreases in inappropriate behaviours and acquisition of basic language is achieved.

There have been numerous articles and critiques written on this topic over the last 20 years and many arguments as to the validity of Lovaas' findings.
The treatment is extremely long and intensive and can therefore prove to be very expensive. However, a growing number of parents have used this method and have been pleased with the results.

In recent years there has been renewed interest in the Lovaas method following the publication of Let Me Hear Your Voice, Catherine Maurice's moving account of her use of the Lovaas approach with her two children.

Lovaas Method of Teaching Autistic Children

2007-05-21T17:53:00.000-07:00

In my Mind - Aspergers Boy talks about how it is to be one

2007-05-19T23:05:00.000-07:00

This is about a teenager with Aspergers talking about how it is to have the condition.

The Geek Test

Autism and Me

2007-05-19T23:04:00.000-07:00

Autism Features

2007-05-19T06:22:00.000-07:00

Here is another Autism Video.Its clear in this video how to recognize CWA.The stacking of any item,the fleeting eye contact,etc.

Skills Involved in Commun ication

2007-05-03T05:19:00.000-07:00

In order for us to effectively communicate, we need skill in multiple areas, including (A) verbal and (B) non-verbal arenas.

(A) Verbal/Spoken Communication Skills (may or may not be affected in ASD)

Semantic language: The ability to use and understand words, phrases and sentences; including abstract concepts and idioms. Aspects of semantic language include:

Receptive verbal language: The ability to understand spoken words and ideas.

Central Auditory Processing (CAP): A mixed group of abilities needed to process and derive meaning from sounds and words; including the abilities to distinguish between similar sounds, and to pick out the main voice from background. In short,“what we do with what we hear.”

Expressive verbal language: The ability to express our ideas with spoken words.

Articulation: The ability to speak each word clearly.

(B) Non-Verbal/Non-Spoken Communication Skills (Problematic in ASD)

Urge to initiate shared social interaction and two-way communication: Theory of Mind

The ability to socialize/relate/empathize requires a working “Theory of Mind.” Theory of mind refers to the relatively unique ability of humans to understand: (1)that I have a mind, (2) that you have a mind; and most importantly, (3) that our minds may not know or be feeling the same things. Without a theory of mind, there is little point in communicating. After all, who would you be communicating to? There is limited ability to truly recognize that there is another human being in the room. It will be difficult to feel the need to communicate with anyone else. It may seem as if there is a plane of glass between the child and others. Eye contact will be poor.

With limited ability to “get inside your mind,” it will be frequently difficult for the child to demonstrate empathy for what you are feeling. For example, a child with theory of mind problems may assume that since he is happy, then you must be happy; or the child may not understand that someone else is deceptive when his own mind always attempts honesty.

Thus, the ability to recognize that you have a mind, the ability to relate to that mind, and the ability to empathize with that mind are all parts of the same skill. It is felt that theory of mind problems underlie many of the difficulties seen in the Autistic Spectrum Disorders.

Closely related to the “interest” in social communication (that arises from a working theory of mind) are the following skills. They are required to actually achieve the meaningful interaction. Certainly, if you don’t have these skills, your ability to appear interested in social interaction may become blunted.

Pragmatic language: The practical ability to use language in a social setting, such as knowing what is appropriate to say, where and when to say it; and the give and take nature of conversation. Effective pragmatics requires a working theory of mind: the ability to figure out what the other person does or does not already know—or might or might not be interested in hearing about. Examples of pragmatic language/theory of mind problems would be:

A new student moves into the school district and enters the classroom for the first time. The teacher asks him where he comes from. The Autistic Spectrum child responds: “From the hallway.”

As an Asperger’s child walks into the office, the doctor notices that her pink shirt matches the color of her jacket. He jokes, “If you change into a green shirt, does the color of the jacket change, too?” The child responds: “My wardrobe includes a turquoise shirt, not a green one.” This child’s spoken language is precise, but she misses (1) the actual meaning of the question; and more importantly, (2) misses that the whole purpose of this conversation was just a little fun chit-chat to initiate an interaction.

The skill to know what is—and what is not—important

Ability to see the big picture rather than fixate on details.

Ability to maintain a full range of interests.

Symbolic play skills

Give a child a yellow box on wheels, with thin long black strips on it. The ability to understand that this object actually represents a school bus is a type of communication—just like the ability to recognize that the letters “C-A-T” stand for a furry animal. Both involve the use of symbols rather than the actual object to communicate.

By 18 months, most toddlers start to use objects as symbols for something else. For example, a cup is for drinking, but it also makes quite a handy telephone. By 3 years of age, most children are quite good at “let’s pretend” activities, such as “You be the cowboy!” The toy school bus is not fascinating because the cold metal box can move, but because little toy figures chat while getting on it as they go to school. Stuffed animals are not just warm rags of cloth to drag around, but living creatures that have feelings and needs.

So, by 18-36 months of age, typical children make continuous progress in the skill of appreciating the representational meaning of a toy, rather than focusing on its straight forward visual attributes. Failure to develop representational/symbolic/pretend play is a strong marker of the Autistic Spectrum Disorders. After all, if you cannot understand that a physical toy bus represents a real truck, how could you understand that the even more purely representational sound “bus” represents a real truck.

Non-verbal (non-spoken) transmission of language. The simple sounds are not the only thing my body sends through space when it attempts to communicate with you. It also transmits:

Facial expressions

Body language

Tone and prosidy of voice

Associated skills sometimes also involved with language problems:

o Motor (muscle) coordination, including both gross and fine motor.

o Spatial orientation.

O Overall cognition

Secondary Problems Resulting from Failure to Understand

If the child does not understand what is going on around her—especially if pragmatic/socialization cues are difficult—secondary problems usually occur in the Autistic Spectrum Disorders. The child will frequently appear:

· Anxious, since she doesn’t know where the next blunder will come from.

· Insistent on sameness and showing ritualistic behavior. Change means that previously hard-learned strategies will not help in this situation. These kids are barely hanging on. One new wrinkle can throw them over the edge. For example, Jill may know how to unpack her lunch from her backpack each day; but, what happens if the lunch is missing. Now what do she do?

· Inattentive, since it’s hard to pay attention to something you don’t understand.

· Rude-appearing, since she doesn’t understand rules of conversation such as waiting your turn.

· Interested in objects rather than people. After all, objects are more predictable.

· “Hanging back” from peers, for all of the above reasons, and from simply not knowing how to make conversation and relate.

· “Out of it” and “odd” looking

Meltdowns How to Handle One

2007-04-28T06:02:00.000-07:00

A Guide to Improving Behaviors in Children with Autism Spectrum Disorders

Children with Autism Spectrum Disorders (ASD) experience the world in a very different way than other children. For these children, behaviors considered to be inappropriate, such as outbursts, tantrums or "meltdowns" may be their only way to communicate their needs, wants and frustrations. Sadly, many parents and family members often do not understand why a child is misbehaving and their actions may make a behavior worse. In addition to causing family problems at home, these behaviors may also result in children with ASD doing poorly in school and at community events, and lead to a difficulty maintaining friendships.

Understanding potential causes of behavioral difficulties for children with ASD and developing tools and techniques to improve your child's behaviors can lead to a happier and more fulfilling life for the whole family.

Leading Causes of Inappropriate Behaviors

Communication delays: Children with ASD may not always understand what is being said to them or asked of them, due to their communication delays. They also may lack the language to adequately express their wants and needs. Acting out, or throwing a tantrum, is a good way to get attention and often is the only way the children can express themselves.

Sensory dysfunctions: Sensory dysfunctions can also be a primary cause of behavioral issues. A common feature of ASD is oversensitivity to sounds, texture, smell and lights. For a child with ASD, it can be as bad as experiencing his or her environment as a jarring alarm going off constantly, a strobe light flashing, a putrid smell everywhere, a feeling of clothing being overly tight and itchy, being asked questions in a foreign language and getting in trouble when the answer is wrong. Very few people would be able to keep their behavior in check under such circumstances, but this is often an everyday reality for children with ASD.

Need for routine: A core feature of ASD is the need for sameness or routine. When children impose a high level of rigidity and structure on their environment, they are setting up unrealistic expectations. When these expectations are not met, it leads to an increase in anxiety and frustration, which, in turn, leads to an increase in behavioral problems.

Tips to Avoid Behavioral Difficulties in Children with ASD

1. Focus on the positive: The best way to eliminate negative behaviors is to reinforce the positive behaviors children engage in throughout the day. This will increase the likelihood they will repeat those behaviors. For example, praising children for homework they've already completed is more effective than yelling at them to finish it. Use motivating statements like, "Wow, I see you've been working hard on your homework. I'll bet you'll be finished in no time at all." When children with ASD finish a task, it is important to give some kind of reinforcement, such as a treat, a token or praise.

2. Tell the child what to do instead of what not to do: In general, it is more effective to give children direct commands. This is particularly true for children with ASD as they often take language literally. When we tell kids what not to do, we assume they will know what the appropriate alternative behavior is. For instance, if you tell a child with ASD "do not jump in the puddle," he may not understand that means "go around" the puddle; instead, he may think it is ok to splash in the puddle, walk through the puddle, etc. Saying, "Walk around the puddle" makes expectations clear and reduces behavioral outbursts or unexplained reactions to what they perceive to be correct.

3. Avoid using too much language: Children with ASD often have communication deficits. When frustrated or anxious, they may be even less able to understand spoken language than usual. Rather than trying to reason with a child in the middle of a tantrum, try to use few words and concrete language. Statements such as, "It is time to get in the car" are more easily understood and followed than if you explain why the child needs to get in the car, how you are going to be late and what will happen if he or she doesn't get in the car.

4. Warn your child of upcoming changes or transitions: While it may not always be possible, it is best to tell a child with ASD about any change that may be occurring and give them plenty of time to adjust. If you are buying new furniture, share pictures or bring your child to the showroom to see and touch it. Ask for help to decide where to place the furniture. This prepares the child for change and reduces anxiety.

5. Use visual schedules or reminders: Structure and consistency are two keys to improving behaviors. A fun way to do this is to develop simple visual reminders or schedules. This can be as simple as putting a picture of your child's teacher on the calendar for every day that he or she needs to go to school, or as complex as having a full schedule written out for every step for getting ready to go to school, along with the expected times of completion.

6. Teach calming techniques: Often, we tell a child to "calm down" when they are feeling anxious or upset. The problem is that we only use the word "calm" when a child is upset. It is important to identify for children what it means to be relaxed or "calm" so that they know the feeling we want them to experience. Try different relaxation techniques - counting to 10, taking deep breaths, yoga, music - to see which ones works best for your child. What calms any child may be highly individualized.

7. Beware of sensory overload: It is always important to look at the environment that your child is in, and determine if it is over-stimulating. A child may throw a tantrum in the grocery store because it is too bright or the "beep beep" of the price scanners is bothersome. The tantrum may be the only way the child knows to quickly get parents out of the store. If you think your child has sensory issues, develop coping strategies, such as letting him or her wear sunglasses in the shop, or listen to music to drown out upsetting sounds.

Use "time-out" effectively: The use of techniques, such as "time-out," - a common punishment that removes a child from an enjoyable activity -- needs to be used with careful consideration in a child with ASD. Time-out may not be effective because what other children consider an enjoyable activity may not be fun for your child with ASD. For example, a child may be held back from recess because she hasn't finished her work. However, if the child finds recess too loud, too unstructured and too crowded, she will actually prefer staying in over going to recess, and may even stop doing school work in an effort to avoid recess. The teacher in this case has mistakenly reinforced the negative behavior by assuming that the child wanted to go to recess. At home a child may be sent to his room after having a temper tantrum during the family dinner. The child may have thrown the tantrum because there was too much language being used at the table, or he did not like the smell of the food. Therefore, sending him away from the table and allowing him to be alone in his room may actually be what he prefers.

These simple strategies are applicable in any environment and can be used by parents and family members as well as health care professionals and educators. Consistent and regular use of these tips can prevent or reduce inappropriate behaviors. It's important to always keep in mind that children with ASD are not necessarily being manipulative or stubborn when they are having behavioral difficulties. They may not have any other way to express what they are experiencing. If we learn to listen to behaviors, we'll be able help them handle them in a more effective and productive manner.

What the mom is doing here is very important.Encouraging an Autistic child to verbalize what he feels is very important to stop or minimize meltdowns.It takes a long time to do this but it will pay off in the end.

Watch in the last video how patient the dad was with the boy.Ignoring does help when they start playing up.Be firm in what you intend to teach them and they will respond.This of course doesnt work all the time.Varied ways of dealing with the tantrums.If one doesnt work,think of another one.The important thing is the child knows you are in control.