In the News

Prevalence of Autism Now 1 in 150, According to New CDC Report
REVERSAL OF SYMPTOMS IN AN AUTISM SPECTRUM DISORDER
Autism and Adults: Finding Independence
INDEPTH: AUTISM

Prevalence of Autism Now 1 in 150, According to New CDC Report
Washington, D.C., Feb. 8, 2007 -- This morning, the Centers for Disease Control and Prevention (CDC) released, through its Morbidity and Mortality Weekly Report (MMWR), the latest revised prevalence figures for autism. The report indicates that the prevalence of autism is now 1 in 150, up from the 1 in 166 figure reported by the CDC in January 2004.
 Today's report states, "Findings from this first U.S. multi-site collaborative study to monitor ASD [Autism Spectrum Disorders] prevalence demonstrated consistency across the majority of sites, with prevalence statistically significantly (p<0.001) higher in New Jersey. Average ASD prevalence across all six sites was 6.7 per 1,000 children aged 8 years. These results indicate that ASDs are more common than was believed previously."
Speaking at a Capitol Hill briefing about the new data, Dr. Gary Goldstein, Autism Speaks' Scientific Advisory Committee Chair and President of the Kennedy Krieger Institute at Johns Hopkins said, "These new numbers provide a much more accurate picture of a disorder that has undoubtedly become a major national health crisis. Our dedication to finding critical answers about autism -- potential causes, better treatments and, hopefully, a cure -- must become that much more urgent today."
These new prevalence estimates are the first to come from multiple sites utilizing the same methodology for the same points in time. (Previous prevalence estimates have been from single sites and have relied on differing methodologies). According to the CDC, these data represent the most comprehensive effort to obtain accurate prevalence figures for Autism Spectrum Disorders to date, and offer important information about the prevalence of these conditions in multiple parts of the U.S.
As part of this study, six ADDM sites evaluated the prevalence of ASDs for children who were 8 years old in 2000 (born in 1992): Arizona, Georgia, Maryland, New Jersey, South Carolina and West Virginia.
An additional eight sites determined ASD prevalence for children who were 8 in 2002 (born in 1994): Alabama, Arkansas, Colorado, Missouri, North Carolina, Pennsylvania, Utah and Wisconsin.
To read the full MMWR report, click here.

REVERSAL OF SYMPTOMS IN AN AUTISM SPECTRUM DISORDER
Rett Syndrome is reversed in genetic mouse model
Cincinnati, OH (February 8, 2007) -The Rett Syndrome Research Foundation (RSRF) announces results of a landmark study reversing the symptoms of Rett Syndrome (RTT) in a genetic mouse model. The findings, by Adrian Bird, Ph.D., of the University of Edinburgh and Chairman of the RSRF Scientific Advisory Board, appear online in Science Express on February 8, 2007. Rett Syndrome is a severe childhood neurological disease that is the most physically disabling of the autism spectrum disorders. The experiments were funded by the Rett Syndrome Research Foundation (RSRF), the Wellcome Trust and the Rett Syndrome U.K./Jeans for Genes.
Caused by mutations in the gene MECP2, RTT affects primarily girls, striking at random in early childhood and destroying speech, normal movement and functional hand use. Many children become wheelchair bound; those who walk display an abnormal, stiff-legged gait. Disordered breathing patterns and Parkinson-like tremors are common.
Restoration of fully functional MECP2 over a four week period eradicated tremors and normalized breathing, mobility and gait in mice that had previously been fully symptomatic and, in some cases, only days away from death.
"Like many other people, we expected that giving MECP2 to mice that were already sick would not work," said Bird. "The idea that you could put back an essential component after the damage to the brain is done and recover an apparently normal mouse seemed farfetched, as nerve cells that developed in the absence of a key component were assumed to be irrevocably damaged. The results are gratifyingly clear, though, and must give hope to those who are affected by this distressing disorder."
Bird is Buchanan Professor of Genetics at University of Edinburgh and Director of the Wellcome Trust Centre for Cell Biology. MECP2, first identified by Bird in 1990, is considered to be a protein that regulates the expression of other genes by turning them off at the appropriate time.
In 1999 Huda Zoghbi, M.D., Professor, Departments of Molecular and Human Genetics, Pediatrics, Neurology, and Neuroscience at Baylor College of Medicine discovered that RTT is caused by mutations in the MECP2 gene. Mutations in MECP2 are now being seen in some cases of childhood schizophrenia, classic autism and learning disabilities. "The findings are extraordinary, and are of relevance not only to Rett Syndrome but to a much broader class of disorders, including autism and schizophrenia. The successful restoration of normal function demonstrated in the mouse models suggests that if we can develop therapies to address the loss of MECP2 we may be able to reverse neurological damage in children and adults with Rett, autism and related neuropsychiatric disorders," commented Zoghbi.
The reversal experiments were carried out in the Bird lab by research assistant Jacky Guy. Employing technology known as Cre-lox recombination, she created mouse models in which MECP2 was silenced by insertion of a Stop cassette into the gene, resulting in the neurological deficits seen in RTT. Silencing could be reversed at will by removing the Stop cassette, thereby reactivating the MECP2 gene. This was achieved by treating the mice with a drug that caused the enzyme Cre to enter the cell nucleus where it could splice out the cassette.
As well as losing overt behavioral defects, the mice also recovered a key electrophysiological function of the brain. This was determined by measuring LTP (long-term potentiation) which provides a quantifiable measurement of the ability of neurons to respond to stimulation. LTP has long been thought to reflect the cellular basis of learning and memory. Though LTP in RTT mice models was defective, it was restored to normal function by the reversal experiments.
"The reversal of neurological defects, reported in the remarkable article by Guy et al, is surprising because the cause of the symptoms occurred early in development and was expected to be permanent. Of particular note is the recovery of LTP, which is the best current physiological correlate of learning and memory. These findings are very encouraging for those searching for a treatment because they give hope that the symptoms could not only be halted from progressing, but the course of the disease itself may be able to be reversed," stated Fred Gage, Ph.D. of the Salk Institute of Biological Studies.
"Dr. Bird's astonishing results usher in a new era for Rett Syndrome and other autism spectrum disorders. The reversal experiments provide justification for aggressive exploration of next steps on all fronts, from drug discovery to gene correction. The Rett Syndrome Research Foundation will be focused on a comprehensive effort to identify and speed treatments to the children and adults in dire need of them," commented Monica Coenraads, co-founder and Director of Research for RSRF and mother of a young daughter with the disorder.
About the Rett Syndrome Research Foundation
The Rett Syndrome Research Foundation (www.rsrf.org) was created in late 1999 and is the largest private source of funds for biomedical research on Rett Syndrome.
About the Wellcome Trust
The Wellcome Trust is the largest charity in the UK and the second largest medical research charity in the world. It funds innovative biomedical research, in the UK and internationally, spending around £500 million each year to support the brightest scientists with the best ideas. The Wellcome Trust supports public debate about biomedical research and its impact on health and wellbeing. www.wellcome.ac.uk

Media Contact:
Monica Coenraads
Director of Research, RSRF
monica@rsrf.org
203.243.5733

Autism and Adults: Finding Independence
With 500,000 Kids in America Affected by the Disorder, We Need More Facilities to House Them as Adults
By JOHN DONVAN

May 30, 2006 — There's been a lot of attention focused on the unexplained swell of children with autism that began in the 1990s and now affects one in every 166 births in the United States.
But there are adults, like Paul DiSavino, who were ahead of that wave.
He was born in 1968 and made it through childhood and adolescence long ago. At age 37, he's well into manhood.
"Adults with autism are adults; they're not just little kids in big bodies," said Dr. Pete Gerhardt at the Organization for Autism Research.
DiSavino has spent his lifetime training hard for the skills most of us pick up with relative ease, such as learning what burns our skin and how to navigate a simple conversation. But despite his achievements, he will always be autistic and will always need a support system.
"He's totally vulnerable," said his mother, Marlene DiSavino. "He's totally naive. He needs to be taught everything."
He's found a place to live his adult life, in a group home in New Milford, N.J., that he shares with other disabled adults.
But places like the group home where he lives — places that both liberate and shelter an adult with autism — are still extremely rare. DiSavino waited 10 years to get accepted to the one where he now lives.
"We have a bunch of adults out there, a bunch of adolescents who are turning into adults, a bunch of kids who are eventually going to be adults, who can be contributing, involved but supported members of the community. So let's make that commitment," Gerhardt said.
That, of course, is the challenge. It costs $75,000 a year to give Paul this place in the world. With an estimated 500,000 kids in America with autism who will be adults before long, the commitment to make this possible for all of them will have to be huge.
"World News Tonight" continues its series on autism through Thursday, June 1 at 6:30 p.m. ET.
Source: http://abcnews.go.com

INDEPTH: AUTISM
Making sense of the confusing world of autism
CBC News Online | Oct. 2, 2006
A child sits flapping his arms wildly in the air; another expresses his frustration by pushing aside a teacher's aide, a third retreats into playing computer games instead of playing with friends.
All three are showing signs of autism, a common neurological disorder. In fact, autism rates are on the rise in Canada, and it's estimated about 150,000 Canadian children have the disorder.
Autism's causes and treatments are the subject of much debate, but a therapy called Applied Behavioural Analysis (ABA) — and therapy known as IBI, Intensive Behavioural Intervention — has been credited with helping autistic children overcome the disorder. The treatment is expensive, however, costing up to $60,000 a year.
In 1998, a group of families in B.C. took the provincial government to court for not funding ABA, which they described as a medically necessary treatment. They argued that by refusing to fund ABA, the province was violating the children's rights under the Charter of Rights and Freedoms.
The province argued it would cost hundreds of millions of dollars a year to pay for the treatments. The parents replied that treatment at an early age would cost less than institutional care later in life.
Two provincial courts agreed with the families and ordered B.C. to play for the treatment.
However, in November 2004, the Supreme Court of Canada ruled that it's up to the B.C. government to decide whether to fund the treatment, because its health coverage plan is "a partial health plan."
"The Canada Health Act and the relevant British Columbia legislation do not promise that any Canadian will receive funding for all medically required treatment," the court's unanimous decision read.
Since 2000, the Ontario government had paid for applied behavioural analysis for children under the age of six with autism. Thirty families with autistic children took the government to court, arguing that the cut-off was discriminated on the basis of age. In July 2006, the Ontario Court of Appeal sided with the government and said the funding can stop at age six.
Source: http://www.cbc.ca/news/background/autism/
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