BREAKING NEWS: U.K. Autism Study Finds Prevalence one in 64

U.K. Autism Study Finds Prevalence one in 64
By: Carin Yavorcik

Autism Society Welcomes New Study
and Calls for Continued Focus
on Supporting People with Autism in America

A new study by researchers in the United Kingdom finds that the prevalence of autism in that country is much higher than previously thought. The current estimate of autism in the U.K. is one in 100. But the new study, led by Professor Simon Baron-Cohen of the Autism Research Centre at Cambridge University, found that for every three diagnosed cases of autism, there are two that are not diagnosed meaning the true prevalence in the U.K. could be as high as one in 64. The Autism Society applauds this research and hopes to see similar studies done in the United States to help address the comprehensive need for services to support individuals with autism across the spectrum.

“The data from this British study reflects what we are also seeing here on the ground in America,” said Autism Society President and CEO Lee Grossman. “We believe the incidence rates here are approaching those in the United Kingdom. In the U.S. educational system, states are reporting higher prevalence even with coding differences among states. There has been an unanswered and urgent need for services and supports for people with autism for decades, and we need to act now to serve.” Mr. Grossman is also a public member of the Interagency Autism Coordinating Committee of the U.S. government.

In the United States, where current estimates place the prevalence of autism at one in 150, the Autism Society hears from many families whose children still have difficulty getting a diagnosis and adults who have never been identified. Reports from the state of Indiana indicate the current rate of identification in students is one in 101, and does not include children who are home-schooled or educated in private institutions, according to the Indiana Resource Center for Autism. The U.S. Centers for Disease Control and Prevention are expected to release updated estimated prevalence rates this year.

“Perhaps the most important issue raised by the Cambridge study is not simply the higher prevalence rate of autism but, rather, the tremendous heterogeneity in its expression,” said Dr. Edward Carr, Leading Professor, Department of Psychology, State University of New York at Stony Brook and a member of the Autism Society’s Applied Research team. “That means that more and varied resources will be required to do full justice to the wide range of support needs across the spectrum from severe, incapacitating disability to subtle yet challenging forms of the condition.”

The study was school-based, with researchers sending diagnostic surveys to the parents of 11,700 children ages 5-9 in participating schools. Based on the scores, children were brought in for further assessment, with researchers finding a number of undiagnosed cases.

“This research, conducted by prestigious and ethical researchers, should generate a call to action across schools, universities, community agencies and others who will be tremendously impacted by the rising numbers of individuals with autism spectrum disorders (ASD),” said Dr. Brenda Smith-Myles, Autism Society Chief Program Officer, a member of the Society's Applied Research team and one of the world’s most-published applied autism researchers. “Today, the best options to ensure optimal outcomes for individuals with ASD are education and multi-faceted supports for home, community, and employment success. All who teach and support individuals with ASD and their families must understand the complex nature of the disorder and be educated on how to provide multi-faceted, comprehensive services that will serve their long-term needs.”

“These numbers are very concerning. It is hard to believe that this many people with autism have always been among us,” said Dr. Martha Herbert, Assistant Professor of Neurology at Harvard Medical School, a pediatric neurologist at Massachusetts General Hospital and a member of the Autism Society’s Applied Research team. “It is both prudent and pressing to look for environmental reasons for these dramatic figures. Perhaps there is something we could be doing differently that could help prevent some of the suffering that comes with this level of need.”

There are several bills currently active in U.S. Congress that could help address these needs, most notably the Autism Treatment Acceleration Act, a comprehensive bill that would provide for adult services, care centers, national teacher training and health insurance. Learn more about this legislation and others at our Take Action page.

Insurance Coverage for Autism Treatments Sought

Patient advocates want the state to more quickly resolve parents' complaints over payments for behavioral therapy.

By Lisa Girion, LA Times
February 25, 2009

Patient advocates called on state regulators Tuesday to force health insurers to cover certain autism treatments.

Consumer Watchdog in Santa Monica sent a letter to Cindy Ehnes, executive director of the state Department of Managed Health Care, and her boss, Gov. Arnold Schwarzenegger, expressing concern about delays in resolving coverage complaints from parents of autistic children.

The parents say insurers are refusing to cover needed behavioral therapy for their children. But, the parents say, when they took their complaints to the department, it sat on them for months.

Consumer Watchdog founder Harvey Rosenfield said in the letter that state laws require the department to take swift action on the parents' complaints and that delays could exacerbate the children's condition.

Autism is a disorder that impairs communication and socialization. Its cause is unknown. There is no cure. But experts and public health authorities say that the disputed behavioral therapy is effective, especially when started at an early age, at mitigating symptoms and improving self-sufficiency.

The department had been sending disputes over the treatment to panels of independent physicians. Increasingly over the last year, those panels had been deciding that the treatments were medically necessary, and the insurers were made to pay.

Then, late last year, Kaiser Permanente, the state's largest nonprofit health insurer, changed its rationale for denying the coverage.

Instead of saying the treatment is not medically necessary, Kaiser now says the therapy is not covered because it is educational and not medical.

The new tactic prompted the department to put several treatment disputes on hold while it considered how to respond.

"The proper handling of Independent Medical Reviews for autism coverage has been a high priority for the DMHC, and the issues in these cases are highly complex, as are most issues concerning autism," said Department of Managed Health Care spokeswoman Lynne Randolph.

"Children with autism and their families deserve a complete examination by the DMHC of all complexities of these cases, which is what we have been providing," Randolph said.

The department's reconsideration of the disputes stoked concern among parents and patient advocates that it might allow insurers to avoid covering the treatments.

Rosenfield threatened to sue the department if it retreated.

"There are no exceptions to the legal requirement that the plans provide coverage for 'medically necessary' treatment to autistic patients . . . no matter what the [insurers] cynically attempt to call it," Rosenfield said in the letter to the department.

The new pressure on regulators raises the stakes in an ongoing controversy over treatment for children with autism.

Parents of autistic children have filed at least two class-action lawsuits against Kaiser in recent months, accusing the insurer of using a series of sham excuses to deny treatment in order to avoid the expense.

Charles Bacchi, interim president of the California Assn. of Health Plans, said that requiring insurers to cover behavioral therapy would drive up everyone's premiums.

"We believe that health plans provide comprehensive coverage for autism related medical services for parents and children every single day," he said. "However, educational services, we believe, are more appropriately covered by schools and [government] regional centers."

Like the association, Kaiser has "asked the department for clarity surrounding the department's views about sending coverage disputes of non-healthcare services to" independent physician review panels, said Jim Anderson, a spokesman for Kaiser.

For more information about autism, visit www.centerforautism.com

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California Legislature Approves Budget Bill

By JUDY LIN, Associated Press Writer

SACRAMENTO, Calif. – The California Legislature passed a long-awaited budget early Thursday after an epic battle that involved several all-night sessions, sending the governor a bill that raises taxes and cuts spending to help close a $42 billion deficit.

Gov. Arnold Schwarzenegger, a Republican, praised the bill, passed by the Democratic-controlled Senate and Assembly. He came out of his office after the budget vote and disconnected a large deficit clock counting the number of days — 106 as of Thursday — that the Legislature had failed to act since he declared a special session to deal with the state's fiscal problems.

"I'm absolutely delighted about the budget passing," Schwarzenegger said outside his office.

The budget deal flew through the Assembly less than an hour after it won approval by a single vote in the Senate after late-night horse trading to win over a final Republican vote.

The package included a combination of spending cuts, tax increases and borrowing, intended to close a projected multi-billion dollar deficit and avert fiscal disaster for the state.

Senate leaders secured the final vote needed from moderate Republican Abel Maldonado in late-night negotiations by agreeing to his demands for election changes, government reform and removal of a gas tax increase, giving them the two-thirds vote needed to pass the package.

To win Maldonado's support, legislators agreed to ask voters to revise the state's constitution to allow open primaries for legislative, congressional and gubernatorial elections.

Leaders also met Maldonado's demands to remove a provision to increase the gas tax, freeze legislators' salaries in deficit budget years and to eliminate new office furniture budgeted for the state controller.

In a statement, Schwarzenegger said: "I am extremely proud of the members of the legislature, both Republicans and Democrats, who had the courage to stand up and put the needs of Californians first. ... we took the difficult but responsible steps to address our entire $42 billion budget deficit and pass historic bipartisan reform measures."

In passing the tax portion of the package, Republicans who broke from their party harkened back to former Gov. Ronald Reagan's decision to pass tax increases during hard economic times.

"What would Ronald Reagan do? Ronald Reagan would vote yes," said Sen. Roy Ashburn of Bakersfield.

Maldonado brought out a photograph of Reagan at a tax bill signing in 1972. He said he never thought he would have to defend California against members of his own party.

"This is not about my political career. This is about the health and safety for the people of California," Maldonado said. "My friends, this might be the end for me. This ensures it's not the end for California."

Senate Minority Leader Dennis Hollingsworth warned the crippling effects of passing the state's largest tax increase in California history.

"You may count this as a win because you got a few Republicans to vote for it," he said. "The taxpayers of California are going to view this as a loss."

___

Associated Press writer Samantha Young contributed to this report.

U.S. Vaccine Court Denies Family's Autism Case

By Maggie Fox, Health and Science Editor

WASHINGTON (Reuters) - A special U.S. court ruled against three families on Thursday who claimed vaccines caused their children's autism.

The Vaccine Court Omnibus Autism Proceeding ruled against the parents of Michelle Cedillo, Colten Snyder and William Yates Hazlehurst, who had claimed that a measles, mumps and rubella vaccines had combined with other vaccine ingredients to damage the three children.

"I conclude that the petitioners have not demonstrated that they are entitled to an award on Michelle's behalf," Special Master George Hastings, a former tax claims expert at the Department of Justice, wrote in the Cedillo ruling.

The families sought payment under the National Vaccine Injury Compensation Program, a no-fault system that has a $2.5 billion fund built up from a 75-cent-per-dose tax on vaccines.

No judges but instead three "special masters" heard the three test cases representing thousand of other petitioners.

They asked whether a combination vaccine for measles, mumps and rubella, or MMR, plus a mercury-containing preservative called thimerosal, caused the children's symptoms.

"The evidence does not support the general proposition that thimerosal-containing vaccines can damage infants' immune systems," Hastings wrote, after reviewing tens of thousands of documents and hours of oral arguments.

Michelle's parents argued that she was a normal baby until she received the vaccine.

Experts say parents often link vaccines with their children's symptoms because they are vaccinated at an age when autism and related disorders are often first diagnosed.

NO EVIDENCE

Two Institute of Medicine reports, in 2001 and 2004, reviewed the evidence and determined there was no link between vaccines and autism. Many other studies have also shown no link, but a small and vocal group of parents continue to press the cases.

"Considering all of the evidence, I found that the petitioners have failed to demonstrate that thimerosal-containing vaccines can contribute to causing immune dysfunction, or that the MMR vaccine can contribute to causing either autism or gastrointestinal dysfunction," the ruling from Hastings said.

"I further conclude that while Michelle Cedillo has tragically suffered from autism and other severe conditions, the petitioners have also failed to demonstrate that her vaccinations played any role at all in causing those problems."

Hastings also rejected an argument that some children may be genetically "hypersusceptible" to mercury.

More than 5,300 cases had been filed by parents who believed vaccines may have caused autism in their children and were seeking payment under the National Vaccine Injury Compensation Program. Under the program, someone injured by a vaccine does not have to prove the vaccine actually caused his or her injuries.

All they need to do is establish that vaccines sometimes cause that particular condition or injury, as the three test cases sought to prove. The no-fault payout system is meant to protect vaccine makers from costly lawsuits that drove many out of the vaccine-making business.

(Editing by Alan Elsner)

Autism Coverage Bill Fails

Senate's Move, House Panel's Inaction Anger Advocates

By Fredrick Kunkle

Washington Post Staff Writer
Thursday, February 12, 2009; Page B07

RICHMOND, Feb. 11 -- The Senate has effectively killed a bill that would have required insurers to cover autistic children, pleasing business lobbies that argued against new mandates but enraging parents who vowed revenge at the polls.

The fight over mandating autism coverage has gathered intensity nationwide and resonated especially strongly in Loudoun County and other fast-growing areas of Northern Virginia with high numbers of children.

Anger about the bill's defeat late Tuesday was magnified by what appeared to be a flip remark by a Northern Virginia lawmaker who had offered qualified backing for the cause. Moments after the vote on the bill concluded a late session, Majority Leader Richard L. Saslaw (D-Fairfax) took the floor.

"I'd inquire of the clerk: Who won?" Saslaw said with a grin. "We had a pool going."

The Senate clerk replied with a smile: "That's not appropriate, senator."

Advocates of the bill thought Saslaw's question referred to a wager on the bill's fate.

"Our parents just felt like their kids were made some sort of a joke, an office wager," said Judith Ursitti, regional director for Autism Speaks, a nonprofit organization.

But Saslaw, who had attempted to broker a compromise on the autism bill, said yesterday that his joke was a victim of bad timing. The office pool he referred to, Saslaw said, concerned the hour at which the Senate's session would end. Saslaw said it was tradition to wager on the timing of "crossover," the final session when each chamber concludes work on legislation that must be referred to its counterpart. Saslaw said he regretted the bill's failure.

"I did everything I could to get this thing out of here," he said.

More than 100 people, including educators, lawmakers, and families with autistic children, assembled in July at a community center in Lansdowne on the Potomac to organize their campaign. They enlisted not only other parents of autistic children but also their friends in what became known as the Loudoun Project. They traveled by the busload to the capital and trooped to lawmakers' offices wearing huge buttons saying, "Autism Votes in Virginia," often with their autistic children in tow.

"We promised a daily presence," said Pasquale "Pat" DiBari, a Leesburg resident and early organizer. "We really went above and beyond to tell legislators our personal stories."

Allying themselves with Autism Speaks, parents entered about 20,000 supporters into their database, and they flooded lawmakers' inboxes with more than 7,000 e-mails, winning bipartisan backing from Dels. Robert G. Marshall (R-Prince William) and David E. Poisson (D-Loudoun). Sen. Jill Holtzman Vogel (R-Winchester) carried a bill in the Senate.

But the legislation met resistance from the business community, which argued that a recession was the worst time to impose a costly mandate.

"I'm very sympathetic to the parents and children caught up in this terrible condition," said Hugh Keogh, president of the Virginia Chamber of Commerce. "[But] our numbers show a decreasing amount of employers who are able to offer health-care insurance every year, and mandates are a part of that."

Reginald N. Jones, a lobbyist for the Virginia Association of Health Plans, said one estimate suggested that the costs of autism coverage could be as much as $40 million a year in Virginia, despite a provision that would cap expenses at $36,000 per child per year.

"It would probably become the second most expensive mandate in Virginia, and maybe the first," Jones said.

The bill quickly met resistance. The House Commerce and Labor Committee took no action on it, infuriating advocates who noted the unpleasant irony that the bill suffered the same fate as some of their children. "To receive the silent treatment was really stunning," DiBari, 40, said.

Jodi Folta, 39, an accountant who lives in Ashburn, said advocates were mystified by the actions of Del. Thomas Davis Rust (R-Fairfax), a member of the Commerce and Labor Committee. Rust appeared to be a friend of the cause, turning up at a rally on the capitol grounds, but he showed no effort to advance it, Folta said.

"He's on our unhappy list," Folta said.

Rust did not respond to a message at his office seeking comment.

In the Senate, Vogel sought compromise by limiting the mandated coverage to children younger than 12. Saslaw cut the age further, to 6 years old. But efforts at compromise failed.

"I've struggled with this bill, and I think everybody here has struggled with this bill," said Sen. Kenneth W. Stolle (R-Virginia Beach) before asking that the bill go back to the Finance Committee, where it would effectively die this year. "The legislative process is an ugly process, and this has been particularly ugly."

Staff writer Tim Craig contributed to this report.

Scientific Review of the Immunization Action Coalitions Guidelines to Vaccination Policies

The issue of whether vaccines are related to autism in any manner remains a controversial and divisive one. The tremendous financial and public health ramifications of the issue render it difficult to imagine that individuals from any community, be it scientific, pharmaceutical, governmental, or parental, can remain unbiased while addressing it.

The following article, which is slated to be published soon, is by Dr. Andrew Wakefield, one of the most active and controversial players in the debate, and consists of a response to the document entitled “Clear Answers and Smart Advice About Your Baby’s Shots” by Dr. Ari Brown, published by the Immunization Action Coalition.

Among the primary points of the paper is the fact that the debate can only be solved by sound scientific research, not strong opinion, a point with which we firmly agree. We encourage a careful reading of the paper and we encourage the reader to assess the levels of evidence presented for the various claims on both sides.

This is not a debate that will be solved by faith in one’s own position, nor by acrimony toward others, but by scientific research alone.

CLICK HERE TO DOWNLOAD A PDF OF THE DOCUMENT

Shedding Light on Autism

presented by

SIDNEY MacDONALD BAKER, MD

May 15-17, 2009
Big Sur, California

Spend a weekend at Esalen with Dr. Baker,

Former Director of the Gesell Institute

of Human Development, co-founder of DefeatAutism Now! and co-author of Autism: Effective Biomedical Treatments, and practicing physician.

Treating the Unique Child: Private Options, Public Policy and the Autism Spectrum will be an intelligent conversation leading to the ultimate question faced by parents, teachers, physicians, therapists: “Have we done everything we can for this child? ”

This is a question Dr. Baker learned to ask in Nepal in 1959 when he apprenticed with Dr. Edgar Miller during a year off from his Yale undergraduate education. This question should concern those entrusted with public policy, where one-size-fits-all approaches is in direct contrast with the fundamental law of Nature: that each living organism is unique. Individuality has practical clinical implications, and demands a tailored approach the individual, not a standard protocol.

The following relevant issues will form the basis for the symposium with Dr. Baker:

• Six rules for preventing autism. And why…
• Seven top treatment options for my child. And why…
• Lab tests: which, when, and why.
• What lessons have we learned from the children who recover?
• How does the language of name-it, blame-it, and tame-it prescription pad medicine affect clinical decisions?
• And other questions that you bring to the conversation as parents, practitioners and policy makers.

Enrollment is limited. Please reserve early
Reservations can be made on-line at www.esalen.org.

Autism 911: Help for a family in chaos

By Linda Saether, CNN Medical Producer

CARD Note: You can follow the Bilsons' progress on CNN American Morning 6 a.m. to 9 a.m. through February 4.

Seal Beach, CALIFORNIA (CNN) -- The Bilson family is like many other families: three kids, a cat, and a small, lovely home with lots of family photos and carved wooden wall signs with sayings like "Live, Laugh, Love."

But step inside their house after 4 p.m. most weekdays and you'll want to cover your ears because of the noise -- the screaming, to be exact. These are not the shouts of sibling rivalry or parental annoyance. This is the high-pitched, ear-shattering sound of a 13-year-old girl. More accurately, it is the sound of a frustrated, irritated, very loud teenager with autism.

Marissa, the middle Bilson child, was diagnosed with autism when she was a toddler. Her mother, Mary, a nurse, knew something wasn't right early on, when young Marissa's tantrums were off the charts and seemingly unwarranted.

But during the first few years, doctors told Mary Bilson that her daughter was fine and this behavior would eventually pass. They were wrong on both counts.

Marissa's behavior has not passed; it has, in fact, become worse. According to Bilson, Marissa and her tantrums rule the household. "I don't want to hear her screaming and tantruming, so we pretty much let her do what she wants," Bilson says. "We" means Mary, her husband, John, and their two other children, Brittany, 15, and 6-year-old Brendan.

Keeping the peace means that, when it comes to Marissa, the rules are different. She is allowed unlimited time on the one family computer. She is allowed access to her siblings' rooms and possessions. She is allowed to eat dinner at the computer instead of the family table.

Watch more on the Bilson's journey »

But before you sit in judgment of the Bilsons, and suggest they just need a firm hand to keep their middle child in line, consider one thing: They are trying to cope with a child with severely impaired social sensibilities.

"Do you think people who don't have children with autism know how tough it is to deal with them?" CNN's senior medical correspondent, Elizabeth Cohen, asked Marissa's mom in a recent interview. "No," Mary Bilson replied. "And I don't see how they could."

She's right -- we can't, because many of us have never seen autism in action, day in and day out.

Learn more about autism »

Autism is described on the National Institutes of Health Web site as a "developmental disorder that appears in the first three years of life, and affects the brain's normal development of social and communication skills." According to the Centers for Disease Control and Prevention, autism and related disorders affect about one out of every 150 babies born each year.

Autism manifests itself in many different ways. Although there are some common threads, like language issues, repetitive movements and difficulties connecting to others, specific behavioral patterns are largely unique to the individual. "Children with autism are all different; they are like snowflakes," explains Dr. Ronald Leaf, co-director of the group Autism Partnership.

The one thing that Leaf believes they all have in common is that "they are not expected to do enough." Leaf insists we have set the bar too low for what we think children and adults with autism can do. "They are highly teachable," he says. "You just have to have a good teacher."

A good teacher is exactly what Bilson was looking for to help her with Marissa. The family had already tried various programs, starting when Marissa was a toddler -- but nothing completely worked for her. And as Marissa entered her teen years, her behavior grew worse. Mary knew that her daughter needed to be reined in, and it needed to be done now.

"She is getting older. She's 13 and her tantrums are louder and longer than they used to be. It's just so inappropriate. It was OK when she was much younger, but now that she's going to be an adult soon, she can't be behaving this way," Bilson says with tired resignation.

But what could the Bilsons do? This family doesn't have a lot of extra money, and most programs either aren't covered by insurance or have long waiting lists. The costs are staggering, according to the Web site FightingAutism.org. Families with autistic children can expect to spend $30,000 annually to provide proper medical, educational and other assistance necessary for dealing with an autistic child.

Enter Autism Partnership, or AP. This group, founded in 1994, offers extensive therapeutic services to children and adults with the disorder. One of its most unique programs is an intensive one-on-one, at-home intervention service that is similar in scope to what happens on the television show "Nanny 911." It's not cheap -- about $2,500 per day, typically for a five-day period (with additional days on an "as needed" basis).

Most of AP's work is grounded in a behavior modification technique known as Applied Behavioral Analysis or ABA. Essentially, the method breaks down behavior patterns, rewarding proper behavior while being careful not to encourage improper responses.

And that is exactly how AP therapist Rick Schroeder hopes to reshape Marissa Bilson's worst behavior. The group, which met Marissa while working in her school, offered the Bilson family a free week-long intervention with the proviso that CNN be allowed to record the process.

The week started off with a day of observation -- a day with lots and lots of screaming and tantrums, that left Schroeder stunned. He had observed Marissa at school where, he says, she was much less demonstrative.

But Schroeder is still eager and ready to tackle the challenge. "I think the family is starting to realize something needs to change, and that's very good," he says after his day of observation. "As far as Marissa's behavior goes -- and the level that she is capable of going to -- she's pretty much out of control, for sure."

Join CARD Feb 14th in Anaheim!

CARD is proud to be a part of this February's Autism/Asperger's Conference in Anaheim, California. Join us as we present our 2008 Study on Early, Intensive Behavioral Intervention on Children with Autism. Stay and watch RECOVERED with us!

It's all happening Saturday, February 14th. What better way to show love, than learning about resources that can lead to autism recovery!

Click Image to Enlarge

Autism Spectrum Disorder May Be More Prevalent Among Children Born Very Prematurely

Science Daily (Jan. 30, 2009) Researchers from Boston University School of Medicine (BUSM) and Boston Medical Center (BMC), in collaboration with other medical centers, have found that children born more than three months premature, are at three times the risk for screening positive on the modified checklist for autism in toddlers (M-CHAT). Children who screen positive on M-CHAT may be at greater risk for developing autism.

The Council on Children with Disabilities of the American Academy of Pediatrics recommends that pediatricians screen for an autism spectrum disorder (ASD) if there are concerns about the child's development. One of the ASD-specific screening tools is the M-CHAT. The M-CHAT is a checklist that asks the parent/caregiver to report on 23 behaviors. Checking any three items or two of six critical items as "unable to perform" leads to a positive screen on M-CHAT.

The researchers enrolled more than 1,500 infants born more than three months early at one of 14 hospitals in five states. An M-CHAT was completed by the nearly 1,000 caregivers of children who returned for follow-up evaluation at age 2.

According to the researchers, when an M-CHAT is used as a screen in unselected children during well-child care visits between 16 and 30 months of age, 5.7 percent screen positive. Overall, more than 21 percent of the children in this study screened positive. The study investigators found that the presence of multiple physical handicaps appears to contribute to screening positive, independent of true autism risk.

"However, in our study, even after excluding those children with motor, vision and hearing impairments, we still found 16 percent screened positive," said lead author Karl Kuban, MD, SMEpi, a professor of pediatrics and neurology at BUSM and Chief, Division of Pediatric Neurology at BMC. "Because we have not yet determined if those who screened positive satisfy criteria for an ASD, we cannot yet assess the predictive values of the M-CHAT among children born at extremely low gestational ages," he added.

Making a diagnosis of ASD often occurs after many years of symptoms, at times delaying appropriate services for children with the disorder. "Determining the predictive value for screening positive on the M-CHAT among extremely low gestational age children and among handicapped children may offer critical information for pediatricians, since the AAP has recommended early screening for autism," added Kuban.

Funding for this study was provided by the National Institute of Neurological Disorders and Stroke.

Journal references:

Karl C. K. Kuban, MD, SM, Epi, T. Michael O'Shea, MD, MPH, Elizabeth N. Alfred, MS, Helen Tager-Flusberg, PhD, Donald J. Goldstein, PhD, Alan Leviton, M. Positive Screening on the Modified Checklist for Autism in Toddlers (M-CHAT) in Extremely Low Gestational Age Newborns. Journal of Pediatrics, January 2009 DOI: 10.1016/j.jpeds.2008.10.011 , Neil Marlow, MD, and Samantha Johnson, PhD. Positive Screening Results on the Modified Checklist for Autism in Toddlers: Implications for Very Preterm Populations. Journal of Pediatrics, January 2009 DOI: 10.1016/j.jpeds.2008.11.028

Legislature Proposes Autism Registry

Studies show Autism affects millions of families across the country.

New Mexico lawmakers are taking steps to try and determine just how widespread the disorder is.
Tuesday, a Senate committee unanimously approved legislation that would create a statewide voluntary autism registry.

Another bill in the works would mandate insurance coverage for autistic children through high school.

"We're way behind the curve and families are struggling mightily so something needs to get done no matter what is happening budget wise," said Liz Thompson, a mother of an autistic child.

Supporters feel it would save the state money in special education and corrections cost.

View the KOAT-TV newsstory.

Copyright 2009 by KOAT.com.

New Study Further Disputes Vaccine-Autism Link

By Carla K. Johnson, Associated Press

A new study from Italy adds to a mountain of evidence that a mercury-based preservative once used in many vaccines doesn't hurt children, offering more reassurance to parents.
In the early 1990s, thousands of healthy Italian babies in a study of whooping cough vaccines got two different amounts of the preservative thimerosal (pronounced thih-MEHR'-uh-sawl) from all their routine shots.

Ten years later, 1,403 of those children took a battery of brain function tests. Researchers found small differences in only two of 24 measurements and those "might be attributable to chance," they wrote in the February issue of the journal Pediatrics, which was released Monday.

Only one case of autism was found, and that was in the group that got the lower level of thimerosal.
Autism is a complex disorder featuring repetitive behaviors and poor social interaction and communication skills. Scientists generally believe genetics plays a role in causing the disorder; a theory that thimerosal is to blame has been repeatedly discounted in scientific studies.

"Put together with the evidence of all the other studies, this tells us there is no reason to worry about the effect of thimerosal in vaccines," said the new study's lead author, Dr. Alberto Tozzi of Bambino Gesu Hospital in Rome.

The debate over thimerosal and autism has been much stronger in the United States than in Italy, Tozzi said. But the researchers recognized a chance to examine the issue by going back to the children who had taken part in the 1990s whooping cough research.

Randomization sets the new study apart. The random assignment of children rules out the chance that factors other than thimerosal, such as education or poverty, caused the results.

Thimerosal, used in some vaccines to prevent the growth of bacteria and fungus, hasn't been in U.S. childhood vaccines since 2001, except for certain flu shots. Italy and other European nations began removing it in 1999. U.S. health officials recommended the removal of thimerosal as a precaution and to reduce the overall exposure of children to mercury.

Safety regulations still require multi-dose vials of vaccines to contain some type of preservative to prevent the spread of infection from contaminated vials.

The study, funded by the U.S. Centers for Disease Control and Prevention, drew praise from outside experts.

" It's yet another well done, peer-reviewed research study that has demonstrated there is no risk of any neurodevelopmental outcomes associated with thimerosal in vaccines," said epidemiologist Jennifer Pinto-Martin of the University of Pennsylvania.

"This becomes the fourth study to look for subtle signs of mercury toxicity and show the answer was 'no,'" said Dr. Paul Offit, chief of infectious diseases at the Children's Hospital of Philadelphia, the author of a book on autism research and the co-inventor of a rotavirus vaccine.
Tozzi said comparing children with no exposure to thimerosal could have improved the study.

"However, if thimerosal were a cause of harm, it is likely that this effect would increase with the
administered dose," he said.

The children received either 62.5 micrograms or 137.5 micrograms of ethyl mercury from all their shots during their first year of life. Thimerosal breaks down as ethyl mercury in the body. Before the reduction of thimerosal in the United States, the maximum exposure for infants was 187.5 micrograms of ethyl mercury.

The researchers found the children in both groups scored, on average, in the normal range on 11 tests of memory, attention, motor skills and other brain functions.

Those 11 tests included 24 measured outcomes. Small, but statistical differences were found for only two of those areas, and only for girls. The girls with higher exposure scored worse on a finger-tapping test with their dominant hands, and on a vocabulary test in which they were asked to name common objects.

There was no difference in boys on those outcomes or others. Researchers also found no difference in tic disorders. And the one autism case found in the lower-intake group was likely a chance finding, Tozzi said.

Comedy Night to Benefit Children with Autism

Get ready to laugh until your stomache hurts!

Some of New York's most up and
coming comedians are joining forces for a spectacular ...

Comedy Night to Benefit
Kids with Autism

When:

Sunday, Feb. 15 @ 8pm

Where:

The Comedy Club

2235 Empire Blvd - Webster, NY

Doors Open: 7 pm

Must be 18 +

Tickets:

$10

To purchase your tickets, contact:

Center for Autism and Related Disorders, Inc. (CARD)

6th North Main Street, Ste 110

Fairport, NY 14450

Or Call:

585-377-6590 x 22

Proceeds from this event benefit

Autism Care and Treatment

Alison Singer Announces Her Resignation as Executive Vice President of Autism Speaks

Disagreement on Vaccine Research Prompts Departure

NEW YORK, NY (January 15, 2009) – Alison Tepper Singer, executive vice president of communications and awareness for Autism Speaks, today announced that she has resigned from her position with the advocacy organization, effective next month.

“It has been an honor and a pleasure to help to build this organization into the preeminent autism advocacy group -- the group that has, in fact, elevated the word “autism” to the global vocabulary,” said Singer. “I am grateful to Autism Speaks founders Bob and Suzanne Wright for their leadership, insight, commitment and for the tremendous support and love they have shown to my family and me.”

“However, for some time I have had concerns about Autism Speaks’ policy on vaccine research. Dozens of credible scientific studies have exonerated vaccines as a cause of autism. I believe we must devote limited funding to more promising areas of autism research.”

Singer resigned prior to the January 14th Interagency Autism Coordinating Committee (IACC) meeting, at which the discussion of vaccine research was to be continued from the December meeting, at the request of one of the public members. Knowing she might cast a vote with which Autism Speaks might disagree, she resigned from Autism Speaks prior to the meeting. Singer serves as a public member of the IACC and will continue to serve until 2011. She was appointed to the IACC by outgoing HHS Secretary Michael Leavitt in 2007.

The IACC, created via the Combating Autism Act of 2006, is responsible for coordinating all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder, including drafting a Strategic Plan for autism research with budgetary requirements. At the January meeting, the IACC voted to seek input on two proposed studies of vaccines and autism from the National Vaccine Advisory Committee Safety Working Group (NVAC), an HHS group specifically charged with undertaking and coordinating scientific review of the federal vaccine safety system, prior to including the proposals as specific objectives in the strategic plan. Singer voted in favor of this motion.

Singer was the first professional hired by Autism Speaks when it launched in 2005. She served as interim CEO for three months, then as senior vice president and later as executive vice president. She also served as a staff member of the board of directors until her resignation. Singer has been responsible for directing the organization’s award-winning awareness and strategic communications programs, including its work with the Ad Council which was awarded a prestigious “Effie” award in 2008 in recognition of the 43 percent increase in overall autism awareness directly attributable to the campaign. She also serves on the Executive Committee of the Yale Child Study Center and on the board of directors of Autism Spectrum News, as well as on numerous state and local autism advocacy committees. She has appeared on Oprah, The Apprentice, NBC Nightly News, Good Morning America , CBS Early Show and numerous other news programs discussing autism issues.

“My work with Autism Speaks and within the advocacy community has been exceptionally rewarding, and I will continue to advocate on behalf of my daughter, my brother and the millions of others affected by autism spectrum disorder,” said Singer.

Testosterone Levels Linked To Autistic Traits

Exposure to high levels of testosterone in the womb is related to the development of autistic traits.

This is the conclusion of groundbreaking research published in the British Journal of Psychology on 12th January 2009, which found that levels of testosterone in amniotic fluid were linked to children's autistic traits up to ten years later.

Psychologists Dr Bonnie Auyeung, Professor Simon Baron-Cohen and their team at the Autism Research Centre at the University of Cambridge measured the levels of foetal testosterone in the amniotic fluid of 235 women who underwent amniocentesis during pregnancy.

Years later these mothers completed questionnaires that measured their children's autistic traits. By this time, the 118 boys and 117 girls were aged between 6 and 10. High levels of foetal testosterone were found to be associated with high scores on two separate measures of autistic traits (the Child Autism Spectrum Quotient (AQ-Child) and the Childhood Autistic Spectrum Test (CAST)) for both boys and girls.

High scores on these measures of autistic traits reflected poorer social skills, imagination and mind reading but good attention to, and memory for detail. The team followed the children from before birth during the unique longitudinal project, which was funded by the Medical Research Council (UK) and the Boston-based Nancy Lurie Marks Family Foundation.

This research goes further than previous studies which have found that higher levels of foetal testosterone are associated with less eye contact at children's first birthday, slower language development at their second birthday, more peer difficulties at their fourth birthday, and more difficulties with empathy at their sixth birthday.

What is novel in this new study is that as it also links higher foetal testosterone to autistic traits such as excellent attention to detail, and a love of repetition, as well as social and communication difficulties.

Professor Baron-Cohen said: "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. "We all have some autistic traits - these are a spectrum or a dimension of individual differences, like height. It is important to note that this research does not demonstrate that elevated foetal testosterone is associated with a clinical diagnosis of autism or Asperger Syndrome; to do that would need a sample size of thousands, not hundreds."

"Our ongoing collaboration with the Biobank in Denmark will enable us to test that link in the future. Dr Auyeung added: "Since the male foetus produces on average twice as much testosterone as the female foetus, the present research may be relevant to the theory that autistic spectrum conditions autism is reflect an 'extreme male brain' - that autism is an extreme manifestation in terms of the structure and function of the male brain. This theory may also explain the higher incidence of these conditions in boys than in girls." Notes The British Journal of Psychology Part 1 2009 also contains a commentary on this paper by Dr Ami Klin of Yale University School of Medicine.

The Autism Research Centre at Cambridge University comprises a group of scientists and clinicians conducting research into the psychology and biomedical aspects of autism and Asperger Syndrome, and pioneers the development and evaluation of special educational methods.

Happy New Year from CARD!

Positive Behavior Management: Tips for Parents and Professionals

Presented by Jonathan Tarbox, PhD ,BCBA
CARD Research and Development Director

Click here to see his complete presentation.

Give the gift of HOPE this Holiday Season!

The Center for Autism and Related Disorders on Autism

CARD Phoenix Celebrates One Year of Successful Service!

Click here to read the complete story and view video.