http://online.wsj.com/article/SB20001424052748703422904575039351632663996.html

Why is a child born in northwest Los Angeles four times as likely to be diagnosed with autism as a child born elsewhere in California?

Medical experts have pondered for years why autism rates have soared nationwide, and why the disorder appears to be much more prevalent in certain communities than in others. Now, some recent studies that zero in on California may shed some light on these baffling questions.

Researchers from Columbia University, in a study published in the current Journal of Health & Place, identified an area including West Hollywood, Beverly Hills and some less posh neighborhoods that accounted for 3% of the state’s new cases of autism every year from 1993 to 2001, even though it had only 1% of the population.

Another recent study, from the University of California, Davis, published in Autism Research, also found high rates of autism in children born around Los Angeles, as well as nine other California locations. Autism, usually diagnosed before a child is 3 years old, is a developmental disorder characterized by impaired social interaction and communication and repetitive behavior.

Both of the California-based studies suggest that local environmental or social factors are driving the high autism-diagnosis rates. And they conclude that childhood vaccinations—which some people fear is a factor behind rising autism—are not to blame. Otherwise, diagnoses of the disorder would be more evenly dispersed, they say.

The studies also disagree on some points. According to the UC Davis study, greater concentrations of autism occur in communities where parents are highly educated, which could mean they have more awareness of autism and access to treatment. By contrast, the Columbia researchers discount the role of educational levels. They believe that social influences, such as shared information about diagnoses, doctors and services, are largely responsible for the high rates they found in parts of Los Angeles.

In Los Angeles itself, residents have a variety of explanations for the high autism rates, ranging from a family’s affluence and the activity of autism-advocacy groups to past air and water pollution.

James McCracken, a child psychiatrist at the UCLA Center for Autism Research and Treatment, says families often have to fight with state bureaucracies to be deemed eligible for services, and some spend thousands of dollars for private evaluations. “You can see the possibility for inequity according to social advantage or cultural background,” he says.

But Moira Giammatteo, a San Fernando Valley mother with a 12-year-old autistic son, doesn’t believe that affluent, educated parents are gaming the system. “It’s not like people think, ‘get this label and you can get services.’ Nobody wants this diagnosis; most parents are in denial,” she says.

Some of the increase in autism rates in past decades is due to changing definitions. Until the early 1990s, diagnoses of autism were rare and included only children with low I.Q.s, who were deeply withdrawn and had very minimal language skills. In 1994, diagnosticians adopted the term autism spectrum disorder (ASD), which also includes children with impaired social skills but not necessarily severe intellectual disabilities or language delays.

On average, one in 110 American 8-year-olds had an autism spectrum disorder in 2006, an increase of 57% since 2002, according to a December report from the Centers for Disease Control and Prevention. Some parts of the U.S. are seeing much higher rates than others: Metropolitan Phoenix, for example, has twice the prevalence as northern Alabama.

Whether those differences reflect actual higher risk in different regions, differences in awareness among local residents, or simply variations in record keeping is something the CDC is trying to untangle.

“We still don’t know what causes autism, and we don’t know a lot of the underlying factors, so we can’t rule out the possibility that there are differences in the distribution of risk factors.” says Jon Bai, a CDC epidemiologist.

Theories abound to explain the steep increase that has occurred in recent years. Some experts attribute it to genetic changes within families. But others say genetic changes wouldn’t occur so quickly and instead they blame environmental toxins or childhood vaccinations.

Another possible explanation: Greater awareness of the disorder, and programs in some parts of the country that can help children regain skills, may make parents more willing to have their children diagnosed.

“But awareness can only go so far” to explain the rising levels of autism, says Dr. Baio. “We are still identifying more children with autism, in all levels of severity, than ever before, which is why this continues to be a perplexing and urgent concern.”

Around the U.S.

Nine out of every 1,000 8-year-olds were diagnosed with autism spectrum disorder as of 2006. But rates vary widely in the survey areas, located in 11 states, that the CDC monitors. (Prevalence per 1,000):
Alabama 6.0
Arizona 12.1
Colorado 7.5
Florida 4.2
Georgia 10.2
Maryland 9.2
Missouri 12.1
North Carolina 10.4
Pennsylvania 8.4
South Carolina 8.6
Wisconsin 7.6

Source: CDC’s Autism and Developmental Disabilities Monitoring Network

In California, children with autism or ASD must be “substantially developmentally disabled” to qualify for services from the state’s Department of Developmental Services (DDS). The two recent studies used data from the DDS in their research. The studies looked at where the children with autism were born, not where they were diagnosed, so that their findings wouldn’t be skewed by families moving into the areas.

As part of their work, the Columbia researchers constructed a “SimCity map of California,” referring to the city-building simulation game, says Peter Bearman, the lead investigator. They assembled data pinpointing not just where children with autism were born and diagnosed but also all the parks, day-care centers, doctors’ offices, autism-advocacy groups and other gathering places.

The result: significantly higher occurrences of autism in a large area of Los Angeles stretching from Santa Monica in the west to beyond Burbank in the east, and from El Segundo in the south to the San Fernando Valley in the north. The epicenter of the autism cluster: areas around Hollywood.

Dr. Bearman says he believes social influences are the leading cause for the high autism rates in Los Angeles, although the researchers continue to examine environmental issues.

Other studies have shown that older parents run a greater risk of having an autistic child. But when the Columbia researchers adjusted the Los Angeles cluster to factor out parental age, the higher levels remained. Dr. Bearman says he believes the high levels will also remain after the data are adjusted for education levels, socio-economic status and other demographic characteristics in future studies.

In addition to parts of Los Angeles, the UC Davis study located clusters around Santa Ana, San Diego, San Francisco, Santa Clara, Fresno and Stockton where children had at least a 70% greater chance of being diagnosed with autism than in surrounding areas.

The Davis researchers believe their findings can be explained solely by parents’ educational levels—by adjusting the data for educational levels, the discrepancies in autism rates virtually disappeared.

“There are many ways that you can see that a highly educated person will be more successful at getting the diagnosis,” says Karla Van Meter, the study’s lead author. “If I’m more educated, I might have different expectations for my child,” she says.

Corrections & Amplifications
An earlier version of this article incorrectly spelled Jon Baio’s surname.

Write to Melinda Beck at HealthJournal@wsj.com

Great News

I just received a copy of the completed DVD on Peace Officer Standards and Training for ASD in the mail.

Over 600 law enforcement agencies in CA will be receiving a copy of this.

It is now important for all of us to ask our Law Enforcement trainers to choose this DVD when training officers. They have many DVD’s to choose from.

It is now important for all of us to help our trainers understand the need in our county for this training.

I am sure we can identify ways to help our trainers see how very important this training is. It is up to us to rally for our children, teens and adults.

When officers understand our children’s needs they also understand many others with developmental learning challenges

This is another great accomplishment of the California Autism Blue Ribbon Commission!!!!

Karen Kaplan
Karensupportsu@comcast.net
415 497-3751

MIND Institute: Autism’s earliest symptoms not evident in children under 6 months

Condition is characterized by a slow decline rather than an abrupt loss of skills, study says

A study of the development of autism in infants, comparing the behavior of the siblings of children diagnosed with autism to that of babies developing normally, has found that the nascent symptoms of the condition — a lack of shared eye contact, smiling and communicative babbling — are not present at 6 months, but emerge gradually and only become apparent during the latter part of the first year of life.

Researchers conducted the study over five years by painstakingly counting each instance of smiling, babbling and eye contact during examinations until the children were 3. They found that by 12 months the two groups’ development had diverged significantly. Intentional social and communicative behavior among children developing normally increased while among infants later diagnosed with autism it decreased dramatically. The study is published online early and will appear in the March issue of the Journal of the American Academy of Child & Adolescent Psychiatry.
“This study provides an answer to when the first behavioral signs of autism become evident,” said Sally Ozonoff, the study’s lead author, a professor of psychiatry and behavioral sciences and a researcher with the UC Davis MIND Institute. “Contrary to what we used to think, the behavioral signs of autism appear later in the first year of life for most children with autism. Most babies are born looking relatively normal in terms of their social abilities but then, through a process of gradual decline in social responsiveness, the symptoms of autism begin to emerge between 6 and 12 months of age.”
Autism is a pervasive developmental disorder of deficits in social skills and communication, as well as in repetitive and restricted behaviors, with onset occurring prior to age 3. Abnormal brain development, probably beginning prenatally, is known to be fundamental to the behaviors that characterize autism. Current estimates place the condition’s incidence at between 1 in 100 and 1 in 110 children in the United States.
Children with a sibling already diagnosed with autism are known to be among those at greatest risk of developing the disorder. The current study included 25 high-risk children who met criteria for autism at 3 years of age, matched with 25 low-risk peers who were developing normally. It was conducted at the MIND Institute and the University of California, Los Angeles. The sole inclusion criterion for the high-risk group was having a sibling with autism; low-risk participants had to have been born after 36 weeks gestation and have no autistic family members.
The children’s development was evaluated at 6, 12, 18, 24 and 36 months of age using a series of widely implemented diagnostic tools, including the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). Examiners were not told which babies were at high- or low-risk when evaluating the participants’ development.
The researchers found that there were few discernable differences between the two groups at the outset but that after six months, 86 percent of the infants who developed autism showed declines in social communication that were outside the range for typical development. “After six months,” the study found, “the autism spectrum disorder group showed a rapid decline in eye contact, social smiling, and examiner-rated social responsiveness.” Group differences were significant by 12 months in eye contact and social smiling and all other measures by 18 months, the study found.
The study is notable because of the accuracy and precision of its prospective methodology, assiduously recording exact numbers of social and communicative behaviors during lab visits. Previously, researchers have constructed evidence of autism’s earliest manifestations by interviewing parents about when they believed their children’s symptoms first arose or by reviewing home movies for clues to when children begin exhibiting symptoms of autism.
“Until now, research has relied on asking parents when their child reached developmental milestones. But that can be really difficult to recall, and there is a phenomenon called the “telescoping effect” where people usually say that they remember something happening more recently than when it occurred,” Ozonoff said. In addition parents frequently will turn off the video camera when their children are behaving poorly — precisely when autistic symptoms may appear.
Ozonoff said that the study provides a deeper understanding for parents, caregivers and health-care providers and for future research of the developmental trajectory for very young children with autism.
“We need to be careful about how we screen, and we need to know what we’re looking for,” Ozonoff said. “This study tells us that screening for autism early in the first year of life probably is not going to be successful because there isn’t going to be anything to notice. It also tells us that we should be focusing on social behaviors in our screening, since that is what declines early in life.”
“This study also found that the loss of skills continues into the second and third year of life,” she said. “So it may not be adequate, as the American Academy of Pediatrics currently suggests, that providers screen for autism twice before the end of the second year. Autism has a slow, gradual onset of symptoms, rather than a very abrupt loss of skills.”
“Screening may need to continue into the third year of life, since symptom emergence takes place over a long time. If a child starts exhibiting a declining trajectory and a sustained reduction in social communication we want to refer them into therapy, especially if they are at risk,” Ozonoff said, “even before we might be able to make a definitive diagnosis.”
Ozonoff said that the study does not address the etiology of autism or causality. In this study, the infants who participated were at high risk due to having strong family histories of autism, suggesting that genetics plays a major role in the later autism diagnoses, despite the fact that their symptoms were not apparent at birth.
The study was funded by grants from the National Institute of Mental Health of the National Institutes of Health.

U.C.Davis MIND Institute
________________________________________

Extremely premature babies show higher autism risk

Researchers found that of 219 children born before the 26th week of pregnancy, 8 percent met the criteria for an autism spectrum disorder (ASD) at age 11. That compared with none of 153 classmates who were born full-term and included in a comparison group.
This latest study shows not only a substantially heightened risk among children born very preterm, but also points to which of these children are most likely to be affected.
“The study shows an increased frequency of ASD, but it is mainly among children with other disabilities, such that the risk of it developing in children with no other problems is very low,” explained Dr. Neil Marlow, a professor of neonatal medicine at University College London, in the UK, and one of the principle researchers on the study.
“We know that very preterm babies’ brains develop differently to those of full-term babies after birth, and that this is associated with a high frequency of cognitive problems in childhood,” Marlow told Reuters Health in an email.
The impaired brain development in these children may account for the high ASD risk, the researchers speculate. And that, they say, means that autism may arise via different mechanisms in extremely preterm children compared with those who were born full-term — for whom, Marlow noted, genetics are believed to be key.
For parents of children born extremely preterm, the findings mean that they should be aware of the possibility that their child’s learning or behavioral issues could be indicative of an ASD.
“Where a parent is worried about learning or behavioral problems in their very premature baby,” Marlow said, “they should seek advice from a professional to see what the nature of these problems is.”

Full Article, Reuters
________________________________________

Hormone-infused nasal spray found to help people with autism
The study, involving 13 adults with either a high-functioning form of autism or Asperger syndrome, a mild form of the disorder, found that when the subjects inhaled the hormone oxytocin, they scored significantly better on a test that involved recognizing faces and performed much better in a game that involved tossing a ball with others.

“This is the first study that looked at whether oxytocin has an effect on social behavior, which is a major deficit in autism,” said Angela Sirigu, who directs the National Center for Scientific Research in France and led the study, published online by the Proceedings of the National Academy of Sciences. “It looks like it could be very helpful.”
While cautioning that more research is needed on children and additional patients to make sure oxytocin is safe and effective, advocates for families with children with autism welcomed the findings.

Here might be a way for programs to access dollars to provide scholarship camp spots.

Karen Kaplan

We’ve designed the site to provide an overview of the many autism research projects underway at the Division of Research and to be a resource for families and providers. Our intent is to keep the site timely and lively so that parents, providers, and researchers can stay current and connected to the most up-to-date news on autism research at Kaiser Permanente. We also provide many downloadable materials containing general information about autism and describing the system for support and services at Kaiser Permanente Northern California.

We believe that the path to prevention starts with research. Please help us raise awareness of the opportunities for families to participate in research by adding a link on your organization’s site to the Kaiser Permanente Autism Research Program website. We are eager to share resources and work together to advance the scientific understanding of autism spectrum disorders.

We welcome your comments and questions about the website or our program. Please contact us at autism.research@kp.org.

http://www.education.com/reference/article/executive-function-high-school-asperger/

Karen Kaplan
Karensupportsu@comcast.net

http://www.nytimes.com/2010/01/23/health/23patient.html?%2334;autism =&sq=&st=cse&%2334;=&scp=1&pagewanted=print
________________________________________
January 23, 2010
PATIENT MONEY
Dealing With the Financial Burden of Autism
By WALECIA KONRAD
WHEN Jeff Sell’s twin sons were found to have autism 13 years ago, he, like so many other parents in the same situation, found himself with a million questions: Will my children be able to function? What are the best treatments and where do I find them? How will this affect the rest of my family?
And besides those monumental worries, Mr. Sell kept asking himself another fundamental question as he began the long string of doctor and therapist visits with his sons: “How in the world am I going to pay for all this?”
Autism trends, treatments and therapies routinely make headlines. Often overlooked, though, is the financial burden for many families with autistic children.
Treatment is extremely expensive. Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health.
That figure includes medical costs like doctor visits, prescriptions and occupational and speech therapy, as well as expenses for things like special education, camps and child care, said Michael Ganz, the author of the study, who is now a health care consultant.
“It can cost $3.2 million to take care of an autistic person over the course of his or her lifetime,” the study said.
More families are grappling with the disorder than ever before. One of every 110 8-year-old children in theUnited States has been diagnosed with autism — and one of every 70 boys, according to the latest survey from the Centers for Disease Control and Prevention, released last fall. That is up from one in 150 children in a comparable report released in 2007.
“The numbers are just amazing,” said Pat Kemp, executive vice president of the advocacy group Autism Speaks, “Unless we attack this like a national health crisis, we’re going to have a huge economic crisis on our hands.”
Certainly families feel the financial strain. Many health insurance policies do not cover autism treatments, while those that do often have severe limits. And there is very little government or private financial assistance available.
In many cases these children will need assistance all their lives, Mr. Ganz points out. Making sure there is money for the future is something else parents worry about.
When his sons received their diagnosis, Mr. Sell was practicing personal-injury law in Texas, and he began paying for many of their treatments from his own income and savings. In 2005, as he became more involved in autism issues, he joined the staff of the Autism Society of America in Bethesda, Md., where he is now a vice president.
His sons are now 15. One, Joe, is talkative and considered “high functioning.” The other, Ben, is nonverbal with profound autism.
“What works for one child doesn’t necessarily work for the other,” Mr. Sell said. “So we’re talking about finding and paying for twice as many treatments.”
In the early years, the Sell family had some autism coverage under Mr. Sell’s health insurance. But claims for certain therapies, tests and treatments were often denied. “I was very aggressive about appealing those denials, and I often won,” Mr. Sell said.
But even with coverage, Mr. Sell found he needed to pay enormous amounts out of pocket to come close to giving his sons the 20 to 40 hours of behavioral therapies each week that were often recommended. (Eventually, as discussed below, Mr. Sell was also able to obtain financial assistance through a special part of the Medicaid program.)
Although direct financial support may be scarce and hard to obtain, there are several autism information and advocacy groups that routinely help parents navigate financial hurdles. Here is a road map parents can use to get started.
CHECK YOUR INSURANCE Coverage for autism treatments is still far from common, but it is improving. Some large employers offer policies that cover treatment, and 15 states have passed laws mandating at least some autism-related coverage. The Autism Society’s Web site lists the relevant states.(That section of the site is still under construction, but you can scroll down to see the states.)
In addition, Maine and New Hampshire both have legislation pending that could pass soon, Mr. Kemp said.
If you do have coverage, watch for limitations. Because treatment for autism is so individualized, there are few uniform standards or protocols for insurance companies to follow. That means parents often have to argue that a certain therapy or treatment is necessary. Also, be sure to check any caps on treatment, Mr. Sell warns. What may look generous — say $36,000 a year — can be spent quickly. Or there may be limits on how many sessions of a particular type of therapy will be paid for each year.
And you will want to coordinate your insurance coverage with the services you may be receiving from your child’s school. If an occupational therapist sees your child regularly in school, for example, you may want to save your insurance dollars for social interaction therapies.
In addition, you may need to be especially aggressive about coverage for some medical conditions. Gastrointestinal problems, for instance, are extremely common in autistic children.
Mr. Sell found himself fighting for such coverage for Ben, his nonverbal son. The insurance company had denied the claim for gastrointestinal testing, saying that because Ben’s behavior problems were related to autism, the testing was not covered.
Mr. Sell, convinced Ben was in pain and could not tell anyone what was wrong, appealed and won. The tests showed that Ben had ulcers and lower-intestine problems that still occasionally flare up and require treatment.
MEDICAID WAIVERS Some states offer Medicaid coverage for children with autism without taking the family’s income into account — only the child’s diagnosis. This is usually reserved for fairly serious cases but is worth exploring, Mr. Sell said.
“This was a godsend for us,” he said. The waiver, he said, allows families access to services that private insurance won’t cover and that they wouldn’t be able to afford otherwise.
With the waiver, Mr. Sell was able to get more home-based speech and occupational therapies for his sons to supplement the sessions they receive at the public school they both attend. Medicaid also covers recreational therapy during which a specialist takes Ben and Joe on hikes and other outings, giving the parents some downtime.
To see if your child is eligible for a Medicaid waiver, go to the Centers for Medicare and Medicaid Services Web site and click on your state.
Because Medicaid is one of the few government lifelines available, waiting lists for waivers can be extremely long. Mr. Sell, for example, waited nine years to get waivers for his sons.
“Just go ahead and get on the list and try not to be too discouraged,” advised Mr. Sell. “Many states are moving faster now.”
GO LOCAL Many autism advocacy organizations, including Autism Speaks and the Autism Society of America, are affiliated with local chapters throughout the country. In addition, most states, counties, towns and cities provide lists of local autism resources and support groups.
It is people in the local groups who will know all the resources available. They can also help you keep up with the latest research, so you don’t spend time and money chasing the many unsubstantiated “cures” out there. They will also have lots of practical advice, like which dentists, optometrists and even barbers are good with autistic children.
“You think going to the barber is no big deal?” Mr. Sell asked. “Just try it with an autistic child.”
OTHER RESOURCES A handful of organizations like Easter Seals and the National Autism Associationoffer financial help to struggling families. Autism Family Resources and United Healthcare Children’s Foundation also offer grants to pay for autism treatments.