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June 2009 Archive

Date: 6/29/2009
Title: NJ Bill On Autism Insurance Closer to Becoming Law
Author: BRUCE SHIPKOWSKI
Publication: THE ASSOCIATED PRESS
Article: TRENTON, N.J. — A measure that would expand health insurance coverage for autism and other developmental disabilities in New Jersey may soon become law.

The bill requires insurers to cover the cost of autism treatments deemed medically necessary, such as physical, speech and occupational therapy, along with behavioral intervention. The Assembly overwhelmingly passed it Thursday.

That came a week after the Senate approved the measure, which would cap coverage at $36,000 annually for patients ages 21 and younger.

The bill now heads to Gov. Jon Corzine, who is expected to sign it into law soon. If that happens, New Jersey would be the 14th state with such coverage requirements.

"Families that have a loved one with autism should not be expected to shoulder the financial hardships of this disorder alone," said Vincent Prieto, D—Secaucus, who co—sponsored the bill with Assembly Speaker Joseph Roberts Jr., D—Brooklawn, and Assemblywoman Joan Voss, D—Fort Lee.

"Requiring health insurers to cover therapies for autistic children early in their lives ensures they receive the treatments they most need when it will make the greatest impact," Prieto said.

A Federal Centers for Disease Control and Prevention study found that 1 in 94 New Jersey children have the disorder, compared with 1 in 152 nationwide.

Autism is considered a genetic—based disorder. Its cause has not been pinpointed and there is no known cure. The symptoms are wide—ranging and include poor speaking and eating abilities, self—inflicted injuries and inappropriate crying or laughing, according to Autism New Jersey.

"Treating autism spectrum disorders early ensures that these children learn basic life skills, which can have lifelong impacts, often mitigating some of the challenges faced by many adults with autism," Voss said.

Some people with autism have trouble learning how to do the simplest tasks, and supporters of the measure say insurers often do not cover needed treatment, or if they do, the coverage is for a limited time. Opponents, while sympathetic, contend it will drive up health care costs for small businesses.

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Date: 6/26/2009
Title: Chromosome Abnormality Tied to Autistic Behavior in Mice
Author: Robert Preidt
Publication: © 2009 ScoutNews, LLC. All rights reserved.
Article: FRIDAY, June 26 (HealthDay News) — Mice with an extra chromosome region inherited from their fathers display many behaviors seen in people with autism, a finding that suggests that the same chromosome abnormality in humans is one cause of autism, according to Japanese scientists.

The mice will be an important tool in efforts to develop treatments for autism, the researchers from Hiroshima University say. Their report appears in the June 26 issue of the journal Cell.

The duplicated chromosomal region in mice is the equivalent of human chromosome 15q11-13, which is duplicated in about 5 percent of all people with autism. It is believed that chromosomal abnormalities account for 10 to 20 percent of autism cases, according to a news release from the journal’s publisher, Cell Press. So far, duplication of chromosome 15q11-13 is the only recurrent aberration connected to autism.

The mice with an inherited duplication of a region on their chromosome 7 showed autism-like behaviors, such as poor social interaction, behavioral inflexibility, abnormal vocalizations and anxiety, the researchers found.

"The link between social behaviors in rodents and social behavior in humans is difficult to establish," the study authors concluded. "Our model mouse will be valuable not only for therapeutic studies but also provides a starting point for more detailed genetic analysis directed toward understanding the etiology of developmental brain disorders."

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Date: 6/25/2009
Title: Preschool Program Faces Ax From Possible State Budget Cuts
Author: By Veronica Van Dress
Publication:
Article: Charlie Price was about a year old when his parents got the diagnosis — autism.

During the next two years, Charlie wouldn’t utter a word, said his mom, Heather Price. At age 3, she enrolled him in preschool — the Early Learning Initiative (ELI) program administered by the Ohio Department of Job and Family Services in partnership with the Ohio Department of Education. It’s one of the many programs that appears headed for the budget ax in the new state spending blueprint.

One year in the program changed Charlie’s life, says his mom. "Now he can tell me things I never even imagined."

Now age 4, he’s nearly ready to start kindergarten.

ELI targets youngsters from low–income families and helps them catch up with their peers. The program also provides child care for working families.

Without it, "he’s not going to get the social skills he needs or other skills he needs for kindergarten," said Price. "Basically, he would be walking into kindergarten with a blindfold."

The vote on the budget is Tuesday. If passed in its current form, ELI programs around Ohio would be phased out by Aug. 21. In Stark County, more than 400 children attending preschool at 21 ELI sites would be impacted.

Some would stay home and receive no services. Others would transfer to subsidized preschool if their families qualify. And roughly a third of the county’s ELI children may not qualify for the subsidy because it requires that parents either have a job or be in school.

Susan Petty of Canton is raising her two grandchildren. Her grandson, Kyler Hall, 3, is in the ELI program at the YWCA. If it’s eliminated, Petty said, "I don’t know what I’m going to do."

Petty fears she won’t qualify for subsidized preschool because her income is too high. She makes about $3,000 a month in Social Security and government aid, she said.

"Us lower–class people are going to lose everything," Petty said. "Where are kids going to go?"

SERVICES NEEDED, MONEY LACKING

Stark County has more to worry about than the loss of ELI programs, said Julie Barnes, executive director of Stark County Job and Family Services.

"Certainly it (would be) a huge loss in terms of helping kids who are at risk," she said. "But this is just one piece of a very complicated puzzle."

Barnes said her agency’s primary programs include child and elderly protection, food stamps, cash assistance, Medicaid, childcare, job assistance and child support enforcement, all of which also face cuts under Gov. Ted Strickland’s proposed budget.

"We’re looking at a 20 percent cut across all these areas at a time when the need for services has increased," she said. "The economy is hitting us hard."

Barnes said the agency is seeing, on average, 65 new applications a day.

ELI is funded through federal Temporary Assistance for Needy Families (TANF) dollars, said Department of Education spokesman Scott Blake. The $125 million the state received under the current budget to fund ELI was diverted to other programs, leaving ELI paid for solely through the general fund. That left it more exposed to the budget writers’ knives.

"Why, if you’re born poor, shouldn’t you still get the best teachers," said Laurie Porter, childcare director at Interfaith Child Development Center in Alliance.

The center has been around nearly 41 years, but it’s only been during the last five years — since ELI has existed — that the quality of the preschool program has met Porter’s expectations.

Porter said her center could lose as much as $264,000 per year if ELI is eliminated. She gets $22,000 a month for 40 children. That pays the wages of eight teachers — four certified and four with child development associate degrees.

"How am I going to keep them now? We finally were digging ourselves out of a hole. We don’t charge a hefty tuition," Porter said.

The center is funded through United Way, state reimbursements through ELI and Job and Family Services and tuition payments. But Porter charges families only as much as they can pay — from $9 to $25 per day depending on a family’s take–home pay. And those who fall short are asked to contribute paper towels or hand soap.

"We’re providing quality education for children who don’t have money, and it’s always the children who are penalized," said Porter.

WORKING POOR IMPACT

Heather Price works as a teacher’s aid at OakPark Preschool in Jackson Township where Charlie attends. Her husband, Charles, is on disability for a mental disorder. The couple has two daughters, Hannah, 6 and Heidi, 5. Hannah also has autism and attended the ELI program in preschool.

The Price family won’t qualify for subsidized preschool because the elder Charles is at home. For his son, that means no more education help until he starts kindergarten.

"It’s going to affect him socially, mentally more than anything," his mom said.

Between disability payments for Charles, Charlie and Hannah, and Heather’s wage, the family makes roughly $30,000 a year.

"What really agitates me is that it’s automatically assumed that because someone’s getting help that they’re welfare cases and will add up to nothing, and that’s not true," said Heather Price. "I’ve seen plenty of families, single moms who are going to school just so they can provide for families."

Price figures it would cost her about $1,200 a month for summer day care. She can’t afford it, she says.

COST OF QUALITY

The YWCA in Canton, Stark County Community Action Agency and Just Like Us in Cleveland subcontract with 21 ELI preschool providers in the county.

More than $2 million in state aid is funneled into the Y and paid out to its 14 programs, including one at the Sixth Street NE facility, said the Y’s ELI coordinator, Christy Johnson.

Johnson said staff may have to be reduced at centers around the county because subsidized preschool is reimbursed at a lower rate than ELI. Centers could lose roughly $100 per child per month in state reimbursements, she said.

Phone blitz

Educators and parents concerned about losing the Early Learning Initiative preschool programs have been calling the House and Senate and the governor’s office with their concerns. They’re hoping to get ELI funding back in the state’s budget, which will come to a vote Tuesday. The deadline to call legislators is Saturday.

Ohio Gov. Ted Strickland: (614) 466–3555 Sen. Bill Harris, Senate president: (614) 466–8086 Rep. Armond Budish, Speaker of the House: (614) 466–5441

Strickland’s plan: Eliminate state’s Early Learning Initiative programs by Aug. 21. What it would mean here: In Stark County, more than 400 children attending preschool at 21 ELI sites would be impacted. Officials are worried that the children, many of them with disabilities like autism, would not receive proper treatment in alternative settings.

Early Learning Initiative Stark County children served: 430 Total funding for Stark County: $3.84 million Maximum reimbursement per child, per year: $10,438 Number of ELI sites in Stark: 21 Number of ELI contracting agencies in Ohio: 99 Ohio children served: 13,997 Total state ELI budget: $125 million *All figures are for 2008–09 Sources: Ohio Department of Education and Ohio Department of Job and Family Services

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Date: 6/24/2009
Title: UIC study hopes to shed light on autism, 'insistence on sameness'
Author: By Emily Stone
Publication: Special to the Tribune
Article: As a kid, Alec Kedziora was a picky eater, refusing anything new and subsisting on a self–selected diet heavy on Cheerios, Chex Mix and bacon. He insisted that all doors in the house be kept closed. His morning activities were identical every day and timed perfectly. If he overslept by even a few minutes he was late for school.

Alec was diagnosed with autism when he was 3, and his rigid routine is common among people with the disorder. Though he was an affectionate, sweet kid, if something went awry he often threw a fit and sometimes banged his head against a desk or wall.

Two years ago, as a freshman in high school, things took a turn for the worse. His frustration turned aggressive and he started getting in fights. His parents, Joe and NiCole Kedziora of Orland Park, were horrified. Alec realized he was acting badly and would apologize to his parents. "I was suffering," he said recently. "I was sad about it."

Hoping to provide relief to people like Alec and to solve a piece of the autism puzzle, a team of researchers at the University of Illinois at Chicago is looking at the relationship between the brain chemical serotonin and the trait known in the field as "insistence on sameness."

With the help of a five–year, $9.6 million federal grant, the team is using a combination of genetics, medication and brain scans to explore possible mechanisms behind this craving for routine. Alec was enrolled by his parents.

There’s no single pattern to autism spectrum disorders, which affect perhaps 1 in 150 children. Some with autism repeat phrases over and over. Some barely interact with anyone. Others are outgoing, but their lack of social skills can sabotage their efforts to make friends. Up to a quarter have insistence on sameness, said geneticist Ed Cook, director of autism and genetics in UIC’s psychiatry department.

The differences make autism a challenging condition to study and to treat.

"Autism is too big as a whole to attack," said John Sweeney, director of UIC’s Center for Cognitive Medicine and the group’s brain imaging specialist. "We have to go through the brain bit by bit to find out what’s working and what’s not. Get the bricks sorted out, and then build the house."

Having to take the same route to school each day to keep a kid calm may not seem like a big deal. But not doing it can trigger distress, and that can lead to anxiety or aggression. Cook said he knows parents who can track the severity of their child’s symptoms by the amount of trashed drywall in the house.

Treating that rigidity has a huge payoff. "They still have autism, but they feel better," Cook said. "And everybody else feels better."

Each participant in the study gets blood drawn for genetic tests, including an analysis of the genes related to serotonin, a neurotransmitter that is part of the brain’s system for modulating mood and emotion. Participants’ families are asked to donate blood samples so researchers can look for hereditary links. All the blood Cook collects from participants –– he’s hoping for more than 250 –– will be shared with a national autism database for other researchers to use.

Participants with a high level of insistence on sameness are referred to the group’s pharmacologist, Tom Owley. The outgoing head of UIC’s Neurodevelopmental Psychopharmacology Clinic, Owley conducted a preliminary study two years ago on the antidepressant Lexapro, which affects serotonin levels. Sixty–five percent of participants who took the drug were helped, according to results of a detailed questionnaire completed by their parents.

He’s hoping this new study backs up those results and that combining the Lexapro research with the genetics and brain scans will help the team understand why the drug may not help some patients. Eventually, he hopes, the research could lead to medications targeted for people with specific autism symptoms.

This month, researchers in another large federal study reported that an antidepressant similar to Lexapro was no more effective than a placebo in reducing repetitive behavior, which seems to contradict UIC’s initial results. Cook said the studies are looking at slightly different things.

The UIC study is focused only on repetitive behaviors that cause the participant distress –– like the breaks in routine that caused Alec to bang his head on a wall or start a fight. The other study measured all repetitive behaviors, whether they were upsetting the subject or not. Cook said he agrees that antidepressants don’t appear to help reduce repetitive behaviors that a person is not hoping to shed, such as a compulsion to order things in a particular way.

In the Chicago project, people taking Lexapro undergo brain scans that record activity in key areas as the participants perform different mental exercises, both before they begin the medication and several months later. The results will be contrasted with those from a group of participants with low insistence on sameness.

The researchers eventually will have a data set that overlaps all this information –– the genetics, the medication results, the scans.

So far, 93 people have participated in the study, nine of whom were put on Lexapro. The researchers are looking in particular for more teenagers and young adults.

Alec, now 17, has been on Lexapro for a year and a half –– he continued to take it even after his time in the study ended. He and his family said the drug made an immediate difference. His family said he’s able to vary his routine.

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Date: 6/19/2009
Title: A Genetic Link Between Anorexia and Autism?
Author: By Maia Szalavitz
Publication:
Article: At the Eating Disorders Unit at the Maudsley Hospital in London, anorexia is not seen as a social disorder — or even primarily a psychological one. While most American treatment providers blame perfection–seeking parents and the media’s idealization of hollow–cheeked actresses for eating disorders (among other dysfunctional behaviors), researchers at Maudsley believe the root cause has little to do with social pressure. Rather, they think anorexia is better explained by heredity — perhaps by some of the same genes associated with autism.

The London researchers have been studying the commonalities between these two conditions for several years. On the surface, they appear entirely different — in autism, patients have difficulty connecting with people in the outside world, while in anorexia, sufferers seem consumed by other people’s perceptions — but Maudsley researchers point out that the salient characteristics of each illness are similar.

For example, both anorexic and autistic patients have a tendency to behave obsessively and suffer from rigid ways of thinking. Tic disorders, which commonly affect people with autism, are found in 27% of people with severe anorexia. And in both conditions, patients have difficulty with "set–shifting," or changing course mentally.

"Both autism–spectrum conditions and anorexia share a narrow focus of attention, a resistance to change and excellent attention to detail," says Simon Baron–Cohen, director of the Autism Research Centre at Cambridge University, who is not involved in the Maudsley research.

In addition, says Janet Treasure, director of the Maudsley Eating Disorders Unit, past research suggests that about 15% to 20% of patients with anorexia may also have Asperger’s syndrome, an autism–spectrum disorder. Research also shows that the conditions occur together in families more often than they would by chance. It’s possible, she says, that the same genetic predisposition for autism and anorexia may be expressed differently depending on gender.

About 15 times as many boys are given a diagnosis of Asperger’s syndrome as are girls, and nearly 10 times as many girls develop anorexia as boys. It’s easy to see how an outsized sense of perfectionism in a female might lead to an unhealthy obsession with thinness — given society’s preoccupation with physical appearance — while a male might end up obsessing about cars or trains, which is typical in autistic boys. "The reason [Asperger’s] is usually diagnosed less often in females may be because it takes a different form — anorexia may be just one of the forms," says Baron–Cohen, adding that there are likely multiple routes leading to anorexia and that autistic features may not factor in all of them.

Treasure has found that starvation itself intensifies autistic characteristics like rigidity and obsession — a phenomenon that applies to all people, but particularly those with anorexia. "When they are underweight, people with anorexia get even more like people with autism," says Treasure. "They can’t interpret other people’s emotions, they can’t regulate their own emotions, and they get overwhelmed when they are frightened or angry."

In fact, in a study published this month in the journal Clinical Psychology and Psychotherapy, Treasure and colleagues found that underweight anorexics performed poorly on a classic test of understanding others’ emotions that was devised by Baron–Cohen to study such defects in people with autism–spectrum disorders. The theory is that hunger focuses the brain so sharply on the task of getting food that, as with other stressors, it shuts down higher cognitive functions, like reading other people’s emotions.

And according to Dr. Eric Hollander, an attending psychiatrist at Montefiore Medical Center in New York City and an expert on autism, there is evidence that the "repetitive thoughts and behaviors, rigid routines and rituals and perfectionism" that characterize both autism and anorexia may be traced to the same regions in the brain. Imaging studies of patients with either condition have found variations in the activity of brain regions like the anterior cingulate cortex, for example, where disruptions contribute to obsessive–compulsive behavior and aberrant social behaviors.

"[Anorexia is] highly heritable, it runs in families, and it’s clear now that it’s affected by a cluster of [early life] vulnerabilities like anxiety and perfectionism. If you don’t have those vulnerabilities, you are very unlikely to develop anorexia," says Dr. Walter Kaye, director of the eating–disorders program at the University of California, San Diego.

Practically speaking, that means researchers may be able to pinpoint specific early risk factors to help identify kids who are vulnerable to developing anorexia — much the same way specialists can now recognize signs of autism as early as 12 months. "We are where autism was 20 years ago. There were the same discussions about the mother causing kids to be autistic, and most of the theory and treatment was based on that," says Kaye, referring to the outdated notion that autism was caused by cold, neglectful "refrigerator" mothers. "I think that anorexia is as biological as autism. It’s just 20 years behind in terms of research."

Treasure’s colleagues at the Maudsley Hospital say current treatments are equally obsolete. In the late 1980s, the British researchers published the earliest studies describing what has become known as the Maudsley method of treating anorexia in teens — and it remains the only therapy that has proved effective in controlled trials. Unlike traditional treatment, which assumes that anorexia is caused by environmental factors and low self–esteem and often involves intense therapy at residential treatment centers, the outpatient Maudsley method does not focus on psychological therapies or on "parent–ectomy" — removing the teen from the home.

Instead, researchers encourage patients and families to regard food as medicine, and caregivers are instructed to use rewards and positive pressure to restore patients’ weight. Use of the car and access to other activities desired by teens are offered as incentives for regularly completing meals, for example. Antidepressant medications, like Prozac, which affect serotonin levels and reduce obsessive thinking among anorexics, may later be prescribed, but not until patients have reached a healthy weight — without enough nutrients in the brain, medications can’t work.

Essentially, Treasure and her colleagues have abandoned the idea that family dysfunction causes eating disorders and instead enlist the family to help guide patients’ recovery. Most recently, the Maudsley method has also incorporated a new type of cognitive behavioral therapy, based on the autism connection, which aims to broaden the narrow thinking routines of people with anorexia. "We try to get them be more flexible," she says, "They want to have these rigid habits and we try to get them to break out of that and see the bigger picture."

The treatment worked for Laura Collins’ 14–year–old daughter, who developed anorexia in 2002. "She ate an apple and thought she could see her arm growing," says Collins, who says it was clear that her daughter’s condition was more than an obsession with being fashionably thin. Collins read about the Maudsley method in a newspaper article and sought clinicians who were willing to try it. "In the U.S., almost all treatment is predicated on blaming or marginalizing the parents," Collins says. Today, her daughter is thriving in college, and Collins runs a group called FEAST, which is dedicated to helping families find evidence–based treatment for eating disorders.

Meanwhile, researchers like Kaye have launched a six–site National Institutes of Health–funded clinical trial to compare the Maudsley method to more traditional family therapies. At U.C. San Diego, Kaye’s group also provides affected families a weeklong intensive introduction to the Maudsley method. "At first," he says, he thought it was "preposterous" that such a short period of treatment would help at all, but "now I’m a believer. It doesn’t work for everyone, but it does work."

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Date: 6/11/2009
Title: SLEEP 2009: Melatonin May Counter Sleep Disorders in Autistic Children
Author: Jim Kling
Publication: Medscape Medical News
Article: June 10, 2009 (Seattle, Washington) — A pilot study in children with autism spectrum disorders (ASD) suggests that low–dose melatonin may be an effective treatment for insomnia in these patients. In this study, positive effects of treatment were seen on both sleep and daytime behavior.

Melatonin "does appear to be effective," Beth Malow, MD, professor of neurology at Vanderbilt University, in Nashville, Tennessee, said during her presentation. She emphasized that the study was small and that more work needs to be done.

"Kids with autism who have some sleep problems are candidates for melatonin, and I believe that large, randomized clinical trials of melatonin are well warranted," she concluded.

Dr. Malow presented the findings here at SLEEP 2009: 23rd Annual Meeting of the Associated Professional Sleep Societies.

Increasing Melatonin Use

Children with ASD may experience insomnia, the researchers note, and parents are increasingly turning to melatonin as a sleep aid. However, not much is known about its potential adverse effects. Melatonin also comes in a wide variety of formulations, some with additives such as antihistamines or vitamins.

Parents perceive melatonin as a natural treatment, but the wide variety of formulations makes it difficult for practicing physicians to assess its utility. "I don’t know what they’re taking," said 1 attendee, referring to his autistic patients.

To better assess melatonin’s safety and efficacy in autistic children, the researchers conducted a 17–week study of children with ASD who had trouble falling asleep.

The study enrolled children aged 4 to 10 years diagnosed with ASD who required at least 30 minutes to fall asleep on 3 out of 7 nights of the week. Parents received behavioral sleep education before melatonin treatments began, and this was continued through the study. Parents filled out sleep and behavioral survey forms at the beginning and end of all study procedures. Patients wore actigraphy watches (Respironics) for 17 weeks.

After 3 weeks, patients were given 1–mg melatonin (Natrol). Every 3 weeks thereafter, the dose was escalated to 3 mg, 6 mg, and 9 mg, until the patient fell asleep within 30 minutes at least 5 out of 7 nights per week. Pre– and posttreatment actigraphy measures were analyzed using a Wilcoxon signed–ranks test.

Ten patients completed the study with no adverse effects. Three required a dose of 1 mg, 5 required 3 mg, and 2 required 6 mg to achieve the desired end point. No patients required a 9–mg dose.

Patients started with a mean sleep latency of 38.7 minutes that was reduced to a mean of 21.8 minutes with treatment (P = 0.039).

The Children’s Sleep Habits Questionnaire showed improvement in sleep–onset delay (P = 0.008) and sleep duration (P = 0.004), repetitive–behavior scale domains of compulsive (P = 0.002) and ritualistic behavior (P = 0.004), and Parent Interview for Autism domain of affective responses (P = 0.02).

Definite Promise

Asked for perspective on these findings, Judith Owens, MD, professor of pediatrics at Brown Medical School, in Providence, Rhode Island, who moderated the session, said the data support the safety, tolerability, and efficacy of melatonin in this patient population.

"This was open label, so you can’t get solid conclusions of efficacy, but it definitely has promise," Dr. Owens told Medscape Neurology.

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Date: 6/09/2009
Title: Autism Study to Follow Pregnant Women
Author: By JENNIFER CORBETT DOOREN
Publication: Wall Street Journal
Article: WASHINGTON — Researchers are looking for 1,200 women who have a child with autism and who are pregnant with another child, as part of a large study of the disorder.

The study is primarily funded by the National Institutes of Health along with money from Autism Speaks, an advocacy group. The project, known as Early Autism Risk Longitudinal Investigation or EARLI study, will follow women from pregnancy, and then monitor the babies until they are three years old.

The study’s goals are to identify early signs of autism and understand its possible causes. The Centers for Disease Control and Prevention estimates that one in 150 U.S. children have an autism spectrum disorder, which includes autism, Asperger’s syndrome and pervasive developmental disorders. There is no known cure for autism, which is characterized by impairments in social interaction and communication, and unusual behavior and interests, but therapy and medication can improve symptoms.

"By studying families who are already affected by autism, we feel we have the best chance at learning how genetics and environmental factors could work together to cause autism," said Craig Newschaffer, a department chair at the Drexel University School of Public Health in Philadelphia and the study’s principal investigator.

Although the specific cause of autism remains unknown, people who already have a child with autism have a much higher risk of having another child with autism, or an autism spectrum disorder such as Asperger’s syndrome. The study is open to pregnant women who have a child with a diagnosed autism spectrum disorder.

Dr. Newschaffer said blood and urine will be collected throughout the study so that DNA can be analyzed. When babies are born, researchers also will collect samples from the umbilical cord; the placenta, which supplies babies with nutrients and oxygen during pregnancy; and meconium, or baby’s first stools.

Study participants must live near one of the four research centers in Philadelphia, Baltimore and Northern California.

Dr. Newschaffer said women who plan to become pregnant can contact a research center to pre–enroll. Women who are less than 20 weeks’ pregnant are also eligible.

Babies born during the study period will receive a series of developmental assessments. Older siblings with autism may also receive assessments to confirm their diagnosis. More information can be found on the study Web site at http://earlistudy.org.

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Date: 6/05/2009
Title: Democrats Balk at President’s Budget Plan on Autism, Cancer
Author: By Walter Alarkon
Publication:
Article: Powerful Democratic appropriators are opposing President Obama’s proposed funding boost for autism and cancer programs, claiming it would inject politics into scientific research.

House Appropriations Committee Chairman David Obey (D-Wis.), Rep. Rosa DeLauro (D-Conn.) and Sen. Tom Harkin (D-Iowa) are questioning Obama’s proposal to increase National Institutes of Health (NIH) funding for cancer by 5 percent and autism research by 16 percent, arguing that it goes against Congress’s traditional approach to science. Historically, lawmakers have avoided setting aside money to research cures for specific diseases in an attempt to leave those decisions to scientists.

The appropriators’ worry is that politicians will start picking what diseases to fund without regard to the evidence.

Obama’s budget calls for boosting total NIH funding by 1.5 percent — an increase of $443 million — to nearly $31 billion.

Obama has proposed increasing cancer research funding by $268 million, to approximately $6 billion. The president is seeking to boost funding for autism research by $19 million, to $141 million.

Harkin wondered whether so much money should go into two diseases alone.

"I’ve fought as hard as anyone for more money for cancer research, but there are other devastating diseases, too," he said during a Senate Appropriations subcommittee hearing on NIH funding last month.

Obey said that the result of determining funding levels for research of one disease over another will lead to "political chaos in an area that ought to be determined by science."

"I think virtually all of us are more comfortable with the final decisions being made on the basis of what peer-reviewed process leads us to the best scientific judgments, as opposed to doing a political balancing act," Obey said during a hearing on Obama’s budget request Tuesday.

Health and Human Services Secretary Kathleen Sebelius said the administration is attempting a "balancing act" of respecting science while trying to find cures for autism and cancer. She said that Obama "fully supports letting science guide the research," but she also noted that the president has a personal experience involving cancer: His mother died at the age of 52 after a bout with ovarian cancer.

"I do know that the president personally feels very strongly about the opportunity to cure cancer in his lifetime and has talked about that for years, based, I think in large part, on his personal experience," Sebelius said.

DeLauro said Tuesday that lawmakers share Obama’s goal of eliminating cancer, noting that she too is a cancer survivor. But the lawmaker said she preferred to avoid the "earmarking of autism and cancer."

Obey said that appropriators, regardless of party, have "steadfastly insisted that allocations to research on diseases be handled by scientists rather than politicians."

"And so we have always resisted efforts to direct a specific amount of funding at a specific disease," he added.

But advocates for cancer treatment said the administration has the right focus, even if it is bucking tradition.

The American Cancer Society (ACS) noted that cancer will kill more than 565,000 Americans and cost $200 billion this year.

"By investing in cancer research, Congress has the power to support promising scientific initiatives that can lead to breakthroughs in prevention, early detection and treatment that will save lives and reduce healthcare costs," said David Pugach, associate director of federal relations for ACS’s Cancer Action Network, the group’s advocacy arm.

Political fights over scientific research spending are not new. In 2003, then-Rep. Pat Toomey (R-Pa.) sponsored an amendment seeking to cut money for studies on sexual behavior. Toomey’s amendment barely failed in the GOP-controlled House.

A spokesman for the Health and Human Services Department (HHS) noted that all diseases benefited earlier this year from the $10 billion investment in the NIH in the stimulus package. NIH research for diseases other than autism and cancer will also increase next year under the president’s proposal, by $154 million.

"We understand the committee’s interest in avoiding disease-specific funding requests," said Bill Hall, the HHS spokesman. "By the same token, and consistent with his campaign promises, the president feels very strongly about the opportunity to combat cancer and to expand support for children, families and communities affected by autism spectrum disorders."

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Date: 6/02/2009
Title: Lawmakers Seek Passage of Autism Treatment Bill
Author: BY JAMES T. MADORE
Publication:
Article: ALBANY – Lawmakers here and in Washington Tuesday urged passage of bills requiring health insurers to pay for autism treatment and therapy for children and young adults.

A bipartisan coalition of state senators and Assembly members touted legislation from Sen. Charles Fuschillo (R–Merrick) and Assemb. Harvey Weisenberg (D–Long Beach) to have insurers cover up to $36,000 per year in autism–related care. The benefit would increase based on the inflation rate.

Meanwhile, in Washington, U.S. Sen. Kirsten Gillibrand announced plans to introduce a bill that would help military families with autistic children. She said, "They often aren’t in one place for very long and that complicates health care."

In Albany, the state lawmakers criticized insurance companies that don’t reimburse for treatments, leading parents to mortgage homes and drain bank accounts to pay the bills. Autism therapy can run from $20,000 to $50,000 annually.

"Parents face financial ruin or stop getting treatments for their child; that has to stop," Fuschillo said.

Autism is a neurobiological disorder affecting communication skills. The causes are in dispute and there is no cure.

One in every 150 children is afflicted, according to the advocacy group Autism Speaks. On Long Island, that amounts to 4,486 children out of a total of 672,595.

The bill in Albany would cover Applied Behavior Analysis, a treatment endorsed by the American Academy of Pediatrics and the U.S. Surgeon General. Reimbursement also would be provided for speech, occupational and physical therapies; medication; counseling; and psychiatric and psychological care.

Weisenberg said, "Ninety–percent of the families with an autistic child end in divorce. . . . We need to provide the resources so that there is less stress on these families."

Similar measures have been adopted in nine states, including Illinois, Texas and Florida.

America’s Health Insurance Plans, a trade group representing companies that insure more than 200 million people, opposes the New York bill and others.

Spokeswoman Susan Pisano said additional coverage requirements would drive up premiums. She said hard–pressed employers are dropping coverage for employees because of the recession.

"They don’t want to pay more for health care. . . . New mandates increase costs," Pisano said.

Some insurers have balked at paying for Applied Behavior Analysis because it has been classified as an "educational" rather than "health" treatment by the pediatrics academy.

Fuschillo and Weisenberg were cautiously optimistic that the legislation would be adopted before lawmakers end their regular session on June 22.

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Date: 6/02/2009
Title: Study Finds Antidepressant Doesn't Help Autistic Children
Author: By Karen Kaplan
Publication:
Article: Nationwide research finds that citalopram is no more effective than a placebo and that its side effects are twice as bad. About a third of autistic kids take the drug, known as Celexa in the U.S.

An antidepressant commonly prescribed to help autistic children control their repetitive behaviors is actually no better than a placebo, according to a report published today.

Roughly a third of all children diagnosed with autism in the U.S. now take citalopram, the antidepressant examined in the study, or others that are closely related. The results of the nationwide trial, published in Archives of General Psychiatry, have some experts reconsidering the appropriateness of antidepressants and other mind–altering drugs used to treat children with autism spectrum disorders.

"There are tons of things being advocated as treatments for autism, some with appropriate caveats and careful explanations, others without any of that," said David Mandell, associate director of the Center for Autism Research at Children’s Hospital of Philadelphia, who wasn’t involved in the study.

An estimated 1.5 million Americans have autism, a group of poorly understood developmental disorders characterized by problems with communication and social interaction. One of the hallmarks of the disorder is obsessive, repetitive behavior such as flapping one’s arms or hands or memorizing car makes and models. When those routines are interrupted, severe tantrums can result.

Only one medication –– the antipsychotic drug risperidone –– has been approved by the Food and Drug Administration for the treatment of irritability and aggression in children with autism. But doctors, frustrated by their limited options, haven’t shied away from giving other pharmaceuticals a chance. Worldwide spending on drugs to treat autism is estimated to be $2.2 billion to $3.5 billion annually.

Because very few medications have been tested on autistic children in large, rigorous studies, doctors have looked to drugs that treat similar symptoms in other conditions, such as obsessive–compulsive disorder or attention–deficit hyperactivity disorder.

That’s what led physicians to a class of antidepressants called selective serotonin reuptake inhibitors, or SSRIs, that help adults with obsessive–compulsive disorder. Their repetitive rituals, such as counting, cleaning or hand–washing, are reminiscent of the behaviors seen in autistic patients.

Doctors were also hopeful about SSRIs because the serotonin system is known to function improperly in people with autism.

But the medications will work only if the root causes of obsessive–compulsive disorder and autistic repetitive behavior involve the same biological pathways in the brain. The new study strongly suggests they do not.

"It just begs for a more careful understanding of the neurological underpinnings of the disorder," Mandell said.

Dr. Bryan King, director of psychiatry and behavioral medicine at Seattle Children’s Hospital and leader of the study, said he was shocked to find that citalopram didn’t help patients. Not only was the placebo slightly more effective, but the drug’s side effects –– such as impulsivity and insomnia –– were at least twice as bad, the study found.

"I personally would have a healthy dose of skepticism about" prescribing citalopram or other SSRIs, King said. Citalopram is sold in the United States under the brand name Celexa.

In the study, King and his colleagues from six academic medical centers, including UCLA, enrolled 149 autistic children ages 5 to 17 whose compulsive behaviors were classified as moderate or worse. After 12 weeks, 33% of the 73 patients who took citalopram had improvements in repetitive behaviors as measured by clinicians and parents, versus 34% of the 76 patients who took a placebo.

If there hadn’t been a control group for comparison, King said he would have been impressed by the improvement seen in the children who took the drug. "The decision would most definitely have been made to continue them," he said.

The study underscores the value of evaluating drugs in randomized, double–blind, placebo–controlled studies, which are considered the gold standard of medical research, Dr. Fred R. Volkmar, director of the Yale Child Study Center in New Haven, Conn., wrote in a commentary that accompanied the study. In such studies, neither patient nor doctor knows who is getting the drug and who is getting the placebo until all the results are in.

"We need more studies of this kind to advance research and guide clinical practice," Volkmar wrote.

Placebo–controlled studies are especially important in evaluating medications to treat behavior and mood because patients are typically in a crisis state when they enroll in a clinical trial and could improve on their own in time, Mandell said.

What’s more, the attention focused on children when they are in a trial tends to improve their behavior all by itself, Volkmar said in an interview.

The study was funded by the National Institutes of Health. King and several of his colleagues have received research grants and other funding from pharmaceutical firms, including Forest Laboratories Inc. of New York, the maker of Celexa.

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