ICare4Autism Speaks at UN on Urgency and Hope for Autism
Dr. Eric Hollander, Director of the Autism and Obsessive Compulsive Spectrum Program at Albert Einstein College of Medicine/Montefiore and Chair of the ICare4Autism Advisory Council, Juan Carlos Brandt, Chief Advocacy and Special Events at the UN and Dr. Joshua Weinstein, Founder and CEO of ICare4Autism
Dr. Beth Diviney, member of the ICare4Autism Advisory Council, Dr. Eric Hollander, Director of the Autism and Obsessive Compulsive Spectrum Program at Albert Einstein College of Medicine/Montefiore and Chair of the ICare4Autism Advisory Council, Juan Carlos Brandt, Chief Advocacy, Special Events at the UN, Dr. Joshua Weinstein, Founder and CEO of ICare4Autism and Dr. Stephen Shore, Professor at Adelphi University
Dr. Beth Diviney, member of the ICare4Autism Advisory Council, Dr. Joshua Weinstein, Founder and CEO of ICare4Autism, Dr. Stephen Shore, Professor at Adelphi University and Dr. Eric Hollander, Director of the Autism and Obsessive Compulsive Spectrum Program at Albert Einstein College of Medicine/Montefiore and Chair of the ICare4Autism Advisory Council
ICare4Autism was invited to the United Nations Convention to address the Rights of People with disabilities. "ICare4Autism's International Conference in Jerusalem in August made a big impact on everyone by giving them a great deal of hope and opening a dialogue that has begun to move forward." said Juan Carlos Brandt, Chief Advocacy and Special Events at the UN in his opening remarks as moderator.
Dr. Joshua Weinstein, Founder and CEO of ICare4Autism presented a global perspective on ICare4Autism's mission and reported on the Global Autism Center to open in 2015. A critical element of his discussion was the Autism Workforce Initiative which will focus on providing employment and vocational services to those on the autism spectrum. A pilot program is to start in New York and Jerusalem to be replicated worldwide.
Dr. Stephen Shore, who is autistic, Professor at Adelphi University gave a touching description of his own personal struggles and how to promote successful employment for those with autism. As a member of the ICare4Autism advisory council he will lead the workforce initiative.
Dr. Eric Hollander, Director of the Autism and Obsessive Compulsive Spectrum Program at Albert Einstein College of Medicine/Montefiore and Chair of the ICare4Autism Advisory Council, reported on the Research Highlights from the recently concluded ICare4Autism International Autism Conference.
Dr. Beth Diviney, member of the ICare4Autism Advisory Council, outlined the global state-of-the-art database system International Computer Analysis Program (ICAP). It will be the largest international database to facilitate collaboration and will disseminate information for educational and medical researchers, practitioners, policy makers, families and autistics.
This international event was in conjunction with the Mission of Israel to the United Nations. Those attending included heads of disability organizations, autistics, persons with other disabilities as well as delegates and leaders from countries such as Monaco, Pakistan, Senegal, Spain, Moldova who spoke about their need to collaborate with ICare4Autism. Dr. Weinstein indicated his intentions to assist each and every one. One audience member indicated that people with developmental disabilities will outlive pediatric care so it is important and urgent for medical professionals to specialize in treating adults with developmental disability. An autistic woman in the audience said "Just because I cannot speak doesn't mean I don't have something to say." ICare4Autism is listening and taking on the challenge of promoting and fulfilling productive lives for people with autism worldwide.
This side of the podium: Finding autism's voice
By Stephen Shore
The work of autism advocacy organizations is vital and urgent.
The Jerusalem Post, August 12, 2012
I spend much of my time explaining a subject that is outside of my professional area of expertise - Autism Spectrum Disorder. I do this because I have the condition.
I have presented my story in 30 countries across six continents, including 45 of the United States. I always share insights and observations based on research, practical experience working with individuals - all from the perspective of my own life as a person anchored on the autism spectrum.
The fact that I regularly speak in front of audiences as large as 1,500 is quite surprising considering that at age 18 months I was struck by the "autism bomb."
My parents watched as their baby lost all functional communications, began having meltdowns,
self-stimulatory and showed abusive behavior. In short, they suddenly had a very autistic infant on their
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Can anyone hear me?
By Joshua Weinstein
Perhaps you have met someone who has it. Maybe you live next door to someone whose life has been affected by it. If not, you have definitely noticed them in line with you at the supermarket or while you wait for your meal at a restaurant. They can be a distant relative, or the child of a close friend. It may even be a member of your immediate family. In any case, your life has definitely been touched by someone affected by Autism Spectrum Disorder, and you know how much work needs to be done to make the lives of these special people better.
Parents of children with autism must learn the best techniques for nurturing their loved ones. Professional caregivers must be completely up-to-date on the latest technologies so that they can guide families through the difficult obstacles that often accompany the joy of raising children with ASD.
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ICare4autism to Create World’s First Global Autism Research and Education Center
Mayor Of Jerusalem Pledges Support In City Hall Ceremony
Home to Future Icare4Autism
Global Autism Center, in Israel
Jerusalem Mayor Nir Barkat and ICare4autism’s Founder and President Joshua Weinstein, Ph.D., M.B.A., meet and agree on the Global Autism Center to be created
NEW YORK and JERUSALEM – December 6, 2010 - The International Center for Autism Research and Education (ICare4autism), a New York-based charity, announced plans to create the world’s first Global Autism Center on Mt. Scopus in Israel, dedicated to catalyzing breakthrough innovation in autism research and treatment. In a ceremony at Jerusalem’s City Hall hosted by Mayor Nir Barkat, ICare4autism’s President Joshua Weinstein, Ph.D., M.B.A., signed an agreement paving the way for ICare4autism to acquire the campus of Bezalel Academy of Art in 2013, and convert it into a center, housing:
- State-of-the-art autism research facilities to serve as a platform for global collaboration.
- The world’s first university-level school of autism studies, to raise therapeutic standards worldwide.
- A model school, applying the latest research, technology and design to the needs of students across the Autistic Spectrum.
- A foundation to support transformative global collaborations in autism education and treatment.
Dr. Joshua Weinstein said, “To tackle the global autism epidemic, we need a community of researchers, educators and advocates that reaches across borders. Our new Center will give us the ability to convene and empower that community.”
Said Dr. Eric Hollander, Chairman of ICare4autism’s Scientific Advisory Council, “The Center will drive the research needed to discover the etiology of autism, ultimately leading to better methods of detection and treatment.”
Said Mayor Barkat, “We welcome ICare4autism’s plan to create a Global Autism Center on Mt. Scopus, and we look forward to the breakthroughs in research that will emanate from its campus to benefit the entire world.”
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Autistic Numbers Whiz Thrives in Brooklyn Store
Brooklyn Hardware Store Doesn't Require Computer; Austistic Savant Has All the Inventory Memorized
By Steve Hartman, CBS Evening News
(CBS) I came to Kramer's hardware in Brooklyn, N.Y., to meet a man name George, who everyone said would give me an interview unlike any I'd ever done before.
His responses to questions about when customers starting coming in and what the store was like in the old days didn't result in much of a response.
Then I realized I was asking the wrong questions.
George's boss, Isaac Abraham, says I should have started out by asking him something like - what's the inventory control number on this random set of faucet handles?
"99-0163, they're Centrals," George quickly responded.
He's right. And he can do it with just about every part in the place.
Abraham compares George's incredible memory and ability to track endless numbers and quantities of inventory to that of Dustin Hoffman's character in the film "Rain Man." Hoffman won an Oscar for his portrayal of an autistic savant.
"He qualifies to be Rain Man number two," says Abraham.
Born with what doctors said back then was a developmental disability, George started working at his father's hardware store in 1951.
When Abraham bought the place 30 years later, he kept George on - partly as a promise to George's dad -- but mostly because Isaac realized that the place would fall apart without George.
When asked what George does for the store, Abraham said, "Basically everything."
The store doesn't need a computer, he says. George keeps track of all this inventory - in his head.
He also knows the phone numbers of all the suppliers, and can even tell you how to get there. Never mind that he doesn't drive and has never even been there himself.
No one can say for sure how he does it or why genius would manifest itself through hardware parts.
But one thing is obvious -- it gives his life order -- and order, for all of us, is comfort.
Broken Mirror Neurons Linked to Autism?
Scientists believe that people with autism may have difficulty understanding other people’s everyday actions and thoughts. The ability to understand another’s action relies on a number of brain regions collectively known as the mirror neuron system. The mirror neuron region fires in the brain when a person acts and when a person observes the same action performed by another, thus the neuron “mirrors” the behavior of someone else, as though the observer were itself acting.
It is not possible, however, to study single neurons in the human brain. Scientists instead have to rely on indirect methods that measure entire regions of the brain. The research team at the University of Nottingham, UK are testing this theory more fully. For their study, volunteers will take part in a series of tests that include computer tasks and puzzles, a short interview, and a Magnetic Resonance brain scan (MRI).
Past studies of children with autism have shown less activity in the mirror neuron regions of the brain when imitating. Anatomically, the area’s cortical regions were observed to be thinner as well. This lack of mirror neurons, according to some researchers, can lead to disabilities in social skills, imitation, empathy, and theory of mind, or the ability to infer another person’s mental state.
Eye tracking provides another indirect measure that may reflect mirror neuron processing. Recent studies indicate that poor eye contact in children with ASD may directly link to social imitation. Human infant data using eye tracking measures suggest that the mirror neuron system develops before 12months of age, and that this system may help human infants understand other people’s actions.
Mirror neurons have also been linked to empathy. The same regions in the brain that respond to observing someone else’s actions are also active when a person experiences an emotion and when they see another person experience the same emotion. However, emotions have been studies far less than actions.
Studies Find Evidence of Novel Genes in ASD by Eli Hatchwell, MD PhD
Eli Hatchwell MD PhD, Director of the Genomics Core Facility and Associate Professor in Pathology, Stony Brook University Medical Center, NY is heading up the genetic component of iCARE4autism's International Autism Conference in Jerusalem in February, 2010. He just released the following report on new studies indicating evidence of novel genes in ASD.
In two articles published in Nature in April 2009, researchers from the Center for Applied Genomics at the Children’s Hospital of Philadelphia report novel genetic findings in ASD. In the first paper, a search was conducted for common variants that might predispose to ASD in all affected individuals, while the second paper focused on the presence of rare genetic changes, confined to those with ASD.
The search for common variants in ASD has not been successful in the past but in April’s report, evidence was found for the likely role of a region of chromosome 5p14.1, which includes two genes, named Cadherin 9 and Cadherin 10, known to be involved in the way that nerve cells communicate with each other during development. While the effects uncovered were weak, the statistics are indicative of an important role for these genes and the region of the genome they inhabit. This discovery does not mean that a new diagnostic test will become available for ASD – rather, it yield insights into the molecular mechanisms that might be worthy of further study.
In a separate study from the same authors, a search was conducted for rare copy number variants (CNVs) that appear to be specific to ASD cases. In addition to confirming the presence of CNVs affecting genes already reported (including CNTN4, reported by Dr. Hatchwell in 2008), the study’s authors report the discovery of a set of genes that fall into 2 categories: genes that mediate neuronal communication (as above, although a distinct set were found) and genes that are involved in the modification of proteins prior to degradation (this class of genes was a novel finding for ASD).
In summary, these studies add to the knowledge of the causes of ASD, and further reinforce the notion that ASD represents a heterogeneous group of disorders for which no one cause is ever likely to be found.
A Genetic Clue to Why Autism Affects Boys More
from Yahoo! News, May 19, 2009
Among the many mysteries that befuddle autism researchers: why the disorder affects boys four times more often than girls. But in new findings reported online today by the journal Molecular Psychiatry, researchers say they have found a genetic clue that may help explain the disparity.
The newly discovered autism-risk gene, identified by authors as CACNA1G, is more common in boys than in girls (why that's so is still not clear), and the authors suggest it plays a role in boys' increased risk of the developmental disorder. CACNA1G, which sits on chromosome 17, amid other genes that have been previously linked to autism, is responsible for regulating the flow of calcium into and out of cells. Nerve cells in the brain rely on calcium to become activated, and research suggests that imbalances in the mineral can result in the overstimulation of neural connections and create developmental problems, such as autism and even epilepsy, which is also a common feature of autism. (See six tips for traveling with an autistic child.)
"Our current theories about autism suggest that the disorder is related to overexcitability at nerve endings," says Geri Dawson, chief science officer of Autism Speaks, an advocacy group that provided the genetic data used by the study's authors. "It's interesting to see that the gene they identified appears to modulate excitability of neurons."
For the new study, researchers at the University of California, Los Angeles (UCLA), combed the genetic database of the Autism Genetic Resource Exchange (AGRE), a resource of DNA from 2,000 families with at least one autistic child. The scientists focused on the more than 1,000 genetic samples of families in which at least one son was affected by the disorder, prompted by the results of an earlier study using the same database, which identified a rich autism-related genetic region on chromosome 17 that contained genetic variants more common in boys than in girls. While nearly 40% of the general population has the most common form of CACNA1G, one variant of the gene was more prevalent in autistic boys, researchers found. "There is a strong genetic signal in this region," says Dr. Daniel Geschwind, director of UCLA's Center for Autism Research and Treatment and one of the study's co-authors. "But this gene doesn't explain all of that signal or even half of it. What that means is that there are many more genes in this region contributing to autism." (See pictures of inside a school for autistic children.)
That's not surprising for a disorder as complex as autism - actually, a spectrum of developmental disorders involving impairment in language, social behavior and certain physical behaviors - with symptoms that range widely in number and severity. So far, studies have linked a handful of genes, all of which play a role in the way nerve cells connect and communicate, with autism spectrum disorders. It's likely not only that a large number of genes contribute to the disorder, but also that a different combination of genes - as well as unique interactions between genes and environment - are responsible for each individual case of autism.
So it's certainly a daunting challenge to begin teasing out the individual genes that may contribute to autism, as the UCLA team has with CACNA1G, but databases like AGRE make the job slightly easier. The next step will be to try to use known autism genes to help develop screening tools or early interventions. "We are going to have a much better understanding of the causes of autism over the next five to 10 years," says Dawson. "We're in a period of great discovery."
Aging with Autism
From KUTV.com, The state of Utah has one of the highest rates of autism in the country. In fact, the numbers show, one out of every 133 children has the disorder. But often what we don’t report is the challenges that families with adult autistic children face. For the past 44-years, Mary Paulsen has done, what any good mother would do, with great love. She has taken good care of her son Philip. He is a grown man who enjoys simple tasks and lives every day of his life, with autism.
Born in the 1960’s, Philip grew up in an era, when doctors knew very little about autism. In fact, many in the medical community believed children with autism where schizophrenic or the result of poor parenting. “And the professional beat me up royally,” says Phillip’s mother Mary. “I was the bad mother, the refrigerator mother. What on earth was I doing to this kid? And I said ‘I wish I knew’.”
As a result, Phillip would go through life with no specific training, and no specific help for his disorder. His social skills were poor, and verbally, it was even worse. “He’s very smart, he’s very savvy,” said Mary. “He can do things that are so crazy, you can’t believe it.” Mary Paulsen also tells us Phillip ran away as a child. One time, he even ran out into the orchard and ate rat poison.
Researchers say autism still remains a complicated disorder. Dr. Megan Farley has studied autism for nearly eight years. She says finding a cause or a cure for the disorder has been a challenge. However, educational treatment has come a long way. With early intervention, those with autism can live a normal life. Just ask the family of Matthew Fairchild. He was diagnosed with autism at the age of 4, and has made great progress according to his mother, Karen. “He’s very high functioning in a lot of ways. He’s very intelligent. His biggest deficit is being able to use expressive language.
Early on, Matthew was enrolled at the Carmen B. Pingree School for children with autism. There he was taught by specially trained teachers. “He really learned how to learn there,” said Karen Fairchild. “Before then, he was only learning what he cared about.” Matthew now holds a job at the Orem City Library and in many ways has become independent. A very different scenario from that of Phillip, who in reality, can never be left alone. The families of both Phillip and Matthew have legal guardianship over the men. Phillip is currently living in a group home. Matthew lives with his parents in Utah County.
Autism in California Increases Twelvefold
From the Contra Costa Times, May 7--California saw a twelvefold increase during the past two decades in the number of autistic people who are receiving services through regional centers, a new state study reveals. The dramatic rise in autism has broad implications for California families, taxpayers and social service agencies. "This is a shocking recognition of the challenges we face, today and into the future," said Rick Rollens, the father of an autistic child and a co-founder of the Medical Investigation of Neurological Disorders Institute at UC Davis.
From 1987 to 2007, the number of children and adults with autism served by regional centers rose from 2,701 to 34,656, notes a study released this week by the state Department of Developmental Services. That is a nearly 1,200 percent increase. By contrast, the state's general population grew by 27 percent during that time frame. Other disabilities saw much smaller growth rates. Regional center clients with mental retardation increased by 95 percent, cerebral palsy by 73 percent, and epilepsy by 66 percent.
People who have autism now outnumber those with cerebral palsy in the state, and they will soon surpass those with epilepsy. Autism is a severe developmental disorder marked by communication difficulties, an adherence to routines and a lack of interest in socializing with others. No one knows what causes the disorder, but many experts now believe one or more environmental factors trigger autism in genetically susceptible children. The latest findings highlight the urgency in discovering a cause, Rollens said. He added that it is ironic that the report is being released shortly before the regional center system faces a $100 million budget cut beginning in July.
This is the third major autism study produced by the state. The numbers understate the amount of autism in California, said Julia Mullen, deputy director of the community services and support division of the state Department of Developmental Services. The statistics include only people who are receiving services through regional centers, which represents about 75 to 80 percent of the autistic population, the study estimates. The numbers also include only those with classic autism. For the most part, people with other autistic spectrum disorders, including Asperger's syndrome and Rett's disorder, are excluded from the statistics.
In a finding with important ramifications for the future, the study notes that within the next five years, more than 4,000 teenagers who have autism will reach adulthood. They will be added to the 6,000 adults already in the regional center system. By 2018, the study estimates, the number of adults with autism will exceed 19,000. It is crucial, Rollens said, that the state develop the infrastructure to serve these families, despite the tight financial times.
Mullen said her agency has developed guidelines on diagnosing autism and effective interventions. It also has placed autism specialists in each of the 21 regional centers to work with the community on approaches and programs, she said. The study reveals that the ratio of males to females who have autism continues to increase. Today, nearly five boys have the disorder for every one girl. The percentage of people who have both autism and mental retardation has dropped significantly, a trend that may provide clues for those trying to solve the autism puzzle. Rollens noted that the state does not have experience in dealing with thousands of adults who have autism, but will need to prepare for what is often a lifelong need for care. "The impact of what we see in these numbers is sobering," he said.
Scientists Find Genetic Clues to How Autism Can Develop
From guardian.co.uk, Scientists have found the first substantial evidence that autism may be caused by genetic differences that damage the connections in the brain in early childhood. Three studies have identified genetic variations which may help explain the origins of the condition, including one that could account for as many as 15% of autism cases.
The researchers believe the findings could help the process of identifying people with an autistic spectrum disorder, improve medical treatments, and potentially lead to diagnostic tests for the condition. About 500,000 people in Britain are autistic, including some 133,500 children, according to the National Autistic Society (NAS), which campaigns on their behalf. People with autism have difficulty relating to those around them and often have higher than usual rates of mental illness, unemployment and social exclusion.
Two papers published online in Nature, by Hakon Hakonarson and colleagues at the Centre for Applied Genomics at the Children's Hospital of Philadelphia, show that mutations in genes that play a role in establishing connections within a child's brain increase his or her chances of developing autism. While a single genetic variant may pose a small increased risk for a child, the researchers claim to have identified variants that may explain up to 15% of the prevalence of autism.
Philip Johnson, the hospital's chief scientific officer, likened the significance of the findings to previous breakthroughs in knowledge about the links between genetics and cancer. "It moves the field of autism research significantly ahead, similar to the way oncology research progressed a few decades ago with the discovery of specific genes that give rise to cancers," he said. "Our extensive pediatric genomics programme has pinpointed particular genes and biological pathways, and this discovery provides a starting point for translating biological knowledge into future autism treatments."
The third paper, published in Molecular Psychiatry, sets out research among those with autism and their families work by a team led by Professor Tony Monaco, of the Wellcome Trust Centre for Human Genetics at Oxford University. It also shows that genes involved in the growth and development of nerve cells in the brain could increase someone's susceptibility to autism. "This does seem to fit with what we know from brain scans - that people with autism may show different or reduced connectivity between different parts of the brain," said Monaco.
However, Richard Mills, research director of the charity Research Autism, cautioned that the research did not answer many key questions. "People shouldn't get too excited about thinking that this research identifies a gene for autism. These studies add to the overall picture of how genes interact with each other and how they influence connections within the brain, but it's not groundbreaking in terms of telling us which genes are implicated and their interaction with the overall environment."
The NAS welcomed the new research. A spokeswoman said: "There is evidence to suggest that genetic factors are responsible for some forms of autism. However, the difficulty of establishing gene involvement is compounded by the interaction of genes with environmental factors. Various studies over many years have sought to identify candidate genes, but so far inconclusively."
The exact causes of autism are still unknown, and many experts believe the type of behaviour that leads to people being diagnosed with autism may have more than one cause, she added. Other theories advanced in recent years as potential contributory factors include drinking during pregnancy, older fathers and early television viewing, though none has been substantiated.
The government today starts a 20-week consultation into how support and services for people with autism can be improved in areas such as health, employment and training. The Office of National Statistics research shows that about 90 in 10,000 children have an autistic spectrum disorder. No study has been undertaken into the prevalence of autism among adults.
European Union Research Grant Awarded To University Of Haifa Research Team
From Medical News Today, The research team is headed by Prof. Kobi Rosenblum of the University of Haifa's Department of Neurobiology and Ethology and has been awarded a grant of $815,000. A research team composed of 14 European groups, headed by Prof. Nils Brose of the Max Planck Institute for Experimental Medicine, has been awarded 11.9 million Euro, on behalf of the European Union, to study the role of synaptic proteins in neurological and psychiatric diseases. One of the research teams is headed by Prof. Kobi Rosenblum of the University of Haifa's Department of Neurobiology and Ethology and has been awarded a grant of 600,000 Euro. The topic of the grant is "Synaptic protein networks in neurological and psychiatric disease."
Many neurological diseases result from mis- or damaged expression of proteins in the links between the nerve cells - the synapses. The goal of the research is to cause deliberate damage to the function of various proteins in the synapses, so as to create disease models that result from abnormal functioning of proteins in the brain, such as autism and schizophrenia. The process is based on the existing knowledge of the function of different proteins and according to medical knowledge relating to people with different brain disorders such as autism and schizophrenia.
Cambridgeshire Study Confirms 1 Per Cent Prevalence Of Autism
From Medical News Today, A new study has confirmed that 1 per cent of children aged between 5- and 9-years-old have an existing diagnosis on the autistic spectrum. The research, published in the June issue of the British Journal of Psychiatry, was carried out by the Autism Research Centre at Cambridge University. The research team, led by Professor Simon Baron-Cohen, used three different methods to estimate the prevalence of autism-spectrum conditions (including previously undiagnosed cases) in Cambridgeshire.
First, the team carried out a survey of cases of autism and Asperger syndrome using the Special Educational Needs (SEN) registers in schools. The register used for this research covered 8,824 children attending 79 schools in Cambridge City, East Cambridgeshire, South Cambridgeshire, and Fenlands. A total of 83 cases of autism-spectrum conditions were reported, giving a prevalence of 94 in 10,000, or 1 in 106 children. This estimate closely replicates findings from previous studies. Second, the team sent a diagnosis survey to the parents of 11,700 children in the Cambridgeshire region. From the 3,373 completed surveys, 41 cases of autism-spectrum conditions were reported which corresponds to prevalence of 1 in 101. Finally, the team sent the Childhood Autism Screening Test (CAST) to parents of the same 11,700 children to help identify any undiagnosed cases of autism-spectrum conditions. All children who scored highly on the CAST, along with a selection of medium and low scorers, were called in for further assessment.
Excluding the 41 cases already known about, the team found an additional 11 children who met research diagnostic criteria for an autism spectrum condition but had not yet been diagnosed. If this finding is extrapolated to the wider population, it means that for every 3 cases of autism spectrum that are known, there may be a further 2 cases that are undiagnosed. In other words, the ratio of known to unknown cases is 3:2.
Professor Baron-Cohen said: "This study is novel because it does not rely on a single source of information but instead combines information from three different sources. "The two independent sources of information - the SEN register and diagnosis survey - provide converging evidence on the prevalence of autism spectrum conditions as being around 1 per cent of primary school-age children. This is about 12 times higher than 30 years ago; including the previously undiagnosed cases, this means that 1 in 64 children may at some point in their lives require support and services."
Professor Baron-Cohen concluded: "It is important to conduct epidemiological studies of autism spectrum conditions so that the relevant services, including education, health and social services, can plan adequate provision for all those children and adults who may need support. Epidemiology is both expensive and time-consuming, but vital if as a society we want to be well-prepared and pro-active, not simply reactive."
Explaining the increase: Prevalence estimates for autism-spectrum condition have shown a steady increase over the past decade. This increase, however, could be accounted for by a number of factors including: improved recognition, awareness and detection - both by parents and professionals; differences in study methodology; an increase in available diagnostic services; growing acceptance that autism can coexist with a range of other conditions; and a widening of the diagnostic criteria - Asperger Syndrome did not enter the diagnostic manuals until 1994.
Additionally, the conceptualisation of autism and related conditions has changed over the years. Previously, it was thought of as a discrete categorical condition, but this view has been replaced by a quantitative and dimensional approach (hence the term 'the autistic spectrum').
Explaining the numbers: The 1 in 64 prevalence estimate was calculated by multiplying the estimate derived from the Special Needs Register (94 cases per 10000) by the ratio of known-to-unknown cases (1.67). This ratio was calculated by adding the (weighted) known cases (which parents reported) and unknown cases (which the scientists found through prospective screening and assessment) and dividing this by the (weighted) number of known cases. Thus, 33.3 (known cases) plus 22.2 (previously unknown cases) equals 55.8. Dividing this by 33.3 (known cases) gives a multiplier of 1.67 (or 3:2 ratio of known to unknown if rounded up). The higher prevalence estimate seen here is therefore the result of combining three different methods of case ascertainment, including cases that met research diagnostic criteria in the estimate, but who did not have a previously recorded diagnosis of autism spectrum condition.
Reference: "Prevalence of autism-spectrum conditions: UK school-based population study" Baron-Cohen S, Scott FJ, Allison C, Williams J, Bolton P, Matthews FE and Brayne C (2009), British Journal of Psychiatry, 194: 500-509.
Celexa Fails Autism Study; Kids Got Side Effects
From The Canadian Press, CHICAGO -- An antidepressant that is among the most popular kinds of medicine used for treating autism didn't work for most kids and caused nightmares and other side effects, new research found. Results showed risks with Celexa outweighed any benefits in the largest published study of medication versus dummy pills for autism. That's according to the lead author, Dr. Bryan King, director of child and adolescent psychiatry at Seattle Children's Hospital and the University of Washington medical school.
The drug is not approved for treating autism. However, many doctors have prescribed it, thinking it might help prevent repetitive behaviours such as spinning, twirling and head-banging that are hallmark autism symptoms. Similar antidepressants have been shown to help treat repetitive actions in people with obsessive-compulsive disorder. But in the autism study, Celexa worked no better than dummy pills. In fact, compared with kids on placebo, those on Celexa were more than twice as likely to develop repetitive behaviours, as well as other side effects including sleep problems and hyperactivity.
Celexa is in a class of antidepressants known as selective serotonin reuptake inhibitors, or SSRIs, which are among the most widely used medicines given for autism. The new research could "change this practice," said prominent Yale University autism researcher Dr. Fred Volkmar. He commented in an editorial released with the study Monday in the June issue of Archives of General Psychiatry.
The results echo a separate study reported in February that showed a low-dose form of Prozac, another SSRI, also did not reduce repetitive behaviors in autism. The overall global market for drug treatment in autism is at least US$2 billion and SSRI antidepressants account for nearly 60 per cent of that, the study authors said. Celexa's maker, Forest Laboratories Inc., issued a statement saying the company "was not involved in this study and therefore cannot provide comment." The National Institutes of Health paid for the research.
Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, said the new results underscore the difficulty in treating a condition with an uncertain cause and symptoms that range from mild to severe. "We are still so challenged to come up with medications that can address core symptoms," she said, "largely because we still don't understand the biology of autism."
The study involved 149 autistic children aged five to 17 who were randomly given either up to 20 milligrams daily of Celexa for 12 weeks or dummy pills. Doctors rated children's symptoms during treatment on a scale of 1 to 7, with high scores reflecting worsening symptoms. The rating method allowed doctors to evaluate improvements in repetitive actions and also other behaviours.
Only about one-third of children on Celexa showed substantial improvement; most showed little or no improvement or got worse. Celexa is among antidepressants labeled with a warning about the potential for increasing risks for suicidal thoughts and behaviour in children, but these symptoms didn't occur in the study. About one-third of children on dummy pills also improved. King said reasons for that are uncertain. It could be they expected to get better with any kind of pill - the well-known "placebo effect." Or it could just have been a coincidence since autism symptoms tend to fluctuate over time. That tendency might also explain why many kids on placebo also developed new or worse symptoms, he said.
Specific Brain Protein Required For Nerve Cell Connections To Form And Function
Neurons, or nerve cells, communicate with each other through contact points called synapses. When these connections are damaged, communication breaks down, causing the messages that would normally help our feet push our bike pedals or our mind locate our car keys to fall short. Now scientists at the University of North Carolina at Chapel Hill School of Medicine have shown that a protein called neurexin is required for these nerve cell connections to form and function correctly. The discovery, made in Drosophila fruit flies may lead to advances in understanding autism spectrum disorders, as recently, human neurexins have been identified as a genetic risk factor for autism.
"This finding now gives us the opportunity to see what job neurexin performs within the cell, so that we can gain a better insight into what can go wrong in the nervous system when neurexin function is lost" said Dr. Manzoor Bhat, associate professor of cell and molecular physiology in the UNC School of Medicine and senior author of the study. The study, published online September 6, 2007, in the journal Neuron, is the first to successfully demonstrate in a Drosophila model the consequences that mutating this important protein may have on synapses.
During the last decade, scientists have learned that neurexins are integral to the transmission of chemical signals within the nervous system. Neurexins interact with binding partners called neuroligins to link neighboring nerve cells together so that signals can be sent and received correctly. Previous attempts to study these proteins in animal models have been challenging. In vertebrates such as mice, three different genes code for the production of certain neurexin proteins. Deleting just one of these genes causes no adverse effects in mouse models, while removing all three is fatal. But fruit flies have only one gene for neurexin, and when Bhat and colleagues deleted the gene, the flies survived -- barely.
"Knocking out neurexin basically resulted in a fly with defective nervous system" said Bhat, also a member of the UNC Neuroscience Center and the UNC Neurodevelopmental Disorders Research Center. First of all, the mutated fruit flies had trouble moving around. When the researchers examined the synapses in these flies, they found that half of them were gone. The synapses that remained were deformed, causing them to send out less chemical signals. The researchers, led by Jingjun Li, a graduate student in neurobiology in the UNC School of Medicine, concluded that neurexin is required for the growth of synapses, for the maintenance of their structure and for their function. Currently, Bhat and other scientists are working to identify the proteins that neurexin binds to, how they interact, and what sequence of events ultimately results in the organization of synapses within nerve cells. The hope is that such studies in Drosophila will one day clarify the role neurexin plays in learning and memory, ultimately leading to a better understanding of how defects in this protein can lead to human disorders such as autism, Bhat said.
Researchers Image Brains of Infants At Risk For Autism
By Jim Dryden
Autism researchers at Washington University School of Medicine in St. Louis are joining other scientists to image the brains of infants and attempt to identify anatomical and behavioral changes that may be linked to the onset of autism. The $10 million, NIH-funded Infant Brain Imaging Study allows investigators to analyze early brain development in children at risk for autism spectrum disorders by virtue of having an autistic sibling. The study builds on two key findings. The first is that children with autism tend to have larger brains — between 5 percent and 10 percent larger by age two — than children who don't have the disorder. Data from pediatricians measuring head circumference suggests the enlargement could begin at the end of a child's first year of life. The second finding suggests the onset of social deficits associated with autism usually cannot be detected until the end of the first year.
"We don't know much about brain development in children with autism or children at risk for autism, but we do know that symptoms start very early," says Kelly N. Botteron, M.D., principal investigator at the Washington University study site and a child psychiatrist at St. Louis Children's Hospital. "We think it's going to be very important to learn about the changes in early brain development that may be associated with autism." Botteron's team is joining researchers from the University of North Carolina, the University of Washington in Seattle and Children's Hospital of Philadelphia, collecting MRI brain images from children as young as six months old. The project also includes a data-coordinating center at the Montreal Neurological Institute in Canada.
"We're recruiting infants as young as possible — even during the mother's pregnancy — for interviews and screenings, and then they come to see us for brief testing and to have MRI scans at six months," says Botteron, who is an associate professor of child psychiatry and radiology at the School of Medicine. "They come back for more scans and more testing at 12 months and again at 24 months."
The Washington University portion of the Infant Brain Imaging Study uses MRI imaging to get a very detailed look at the brain's anatomy. The investigators also perform what's called resting-state, functional MRI imaging, which provides information about how the various structures in the brain connect to one another while the baby is resting. A third imaging technique, called diffusion tensor imaging, allows Botteron's team to analyze characteristics of the brain's gray matter and white matter. The imaging is done in the evening while the babies are asleep.
New National Children's Study Seeks Environmental Causes of Autism, Asthma, ADHD
From US News and World Report
Starting this week, pregnant women in Duplin County, N.C., and Queens, N.Y., will be getting letters and phone calls asking them to be part of the National Children's Study. This first-ever effort, 10 years in the making, will follow thousands of children from the womb to age 20, with the goal of finding the causes of major health problems like asthma, autism, attention deficit hyperactivity disorder, low birth weight, birth defects, and premature birth. In the months and years to come, 103 more areas of the country will be included in this first large-scale, long-term study to investigate environmental factors like pollution and pesticides as possible causes.
"We'll be able to amass information on the environmental causes of these diseases within three to five years," says Philip Landrigan, a principal investigator for the study, based at the Mount Sinai School of Medicine in New York. He pioneered research on the health effects of air pollution on children, proving in the 1970s that children could suffer IQ loss and other serious damage from exposure to low levels of lead previously thought safe.
Environmental factors clearly play a role in asthma and are suspected in autism. This month, researchers at the University of California-Davis reported in Epidemiology that autism rates in California have increased from 6.2 of every 10,000 children born in 1990 to 42.5 in 2001, an increase that couldn't be explained by better diagnosis or by migration. In the past few years, scientists have focused largely on finding genetic causes of autism, but genes don't change that much in 11 years. The National Children's Study could finally shed some light on the environmental causes of autism.
Autism Linked To High Levels of Testosterone In Womb
Prenatal screening tests could follow ground-breaking research into 235 children
By Sarah Boseley, The Guardian, UK
A prenatal screening test for autism comes closer today as new research is published that links high levels of the male hormone testosterone in the womb of pregnant women to autistic traits in their children. The ground-breaking study, published in the British Journal of Psychology by some of Britain's leading autism researchers, was prompted by the fact that autism is four times more common in boys than in girls. It is linked with other traits that are found more commonly in boys, such as left-handedness.
For more than eight years, a team at Cambridge University's autism research centre has been observing and testing the development of a group of 235 children whose mothers had an amniocentesis during pregnancy. The procedure involves drawing off fluid surrounding the baby in the womb using a fine needle and is offered by hospitals to pregnant women over 35 or 37 to test for Down's syndrome. The age and circumstances of the women have been taken into account in the research. Dr Bonnie Auyeung, Professor Simon Baron-Cohen and colleagues, who publish their findings today, say they have consistently found a link between higher testosterone levels in the womb and autistic traits, such as a lack of sociability and verbal skills, in the children.
These are not autistic children, but many of us have traits that are more pronounced in those who have a medical diagnosis. Autism has been described as a consequence of an extreme male brain. Those affected do not empathise easily with other people (as girls tend to do more readily than boys). They cannot guess what other people are thinking or feeling. They have a much stronger drive towards analysis and constructing systems and can have a great ability to focus on something that absorbs them. People with autism include some brilliant, albeit eccentric and reclusive, mathematicians and musicians, as well as children who are never able to communicate and may end up in an institution.
In the early years of the study, the scientists could not measure autistic traits in the children, but they noticed some very early indicators. Male babies with higher testosterone levels were less likely to make eye contact at 12 months, their vocabulary was more limited between 12 months and 18 months, and at the age of four they were less sociable and had narrower interests. Today's paper is a significant step forward because the children, now between eight and 10, are old enough to be psychologically assessed using two separate autism rating tests. Scientists found a clear link, in both tests, between higher testosterone levels when the child was in the womb and autistic traits.
The study highlights for the first time the association between foetal testosterone and autistic traits, and indicates that foetal testosterone not only masculinises the body, it masculinises the mind and therefore the brain, said Baron-Cohen. The children will continue to be followed for some years, but Baron-Cohen and his team have at the same time expanded their research to look at the relationship between testosterone levels in the womb and children with a diagnosis of autism. They have turned to Denmark, where a biobank has been freezing and storing many thousands of samples of amniotic fluid from pregnant women since 1990. A new, collaborative study, which will include autistic children, will be published this year. The work opens the way for a screening test for pregnant women, which could potentially involve amniocentesis to draw off fluid from the womb to measure testosterone levels.
The work is published on the day the General Medical Council hearing into Dr Andrew Wakefield and colleagues at the Royal Free hospital resumes. The three doctors face allegations of serious professional misconduct over their study, published in the Lancet journal in 1998, which suggested a link between autism and MMR vaccination.
Their paper came at a time of intense anxiety over soaring autism levels, which doctors have ascribed partly to better diagnosis but have not completely explained. More than half a million people are diagnosed with an autistic spectrum disorder, including Asperger's syndrome, in Britain. One of the reasons it sparked such a furore is that parents with an autistic child have no idea what has caused the condition and are left in a state of bewilderment and worry, wondering if they themselves could somehow be responsible. Diagnosis is usually delayed and often followed the MMR vaccinations, given at around 13 months and three to four years. A prenatal test would have the advantage of giving parents advance warning, so that they would be able to do everything possible to help their child from birth.
Even if a testosterone test is not developed (scientists may still find that it is not completely reliable), genetic screening will one day be on the cards. Scientists know that autism is partly genetic, because it runs in families, although environmental factors must play a part because there have been occasions where one identical twin was autistic and the other was not. More than 100 genes have been associated with autism, but it is not yet clear which are most important.
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