The Autism News

The Autism News | English

By Melinda Beck | The Wall Street Journal

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.”

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.

Source: http://online.wsj.com/article/SB10001424052748703422904575039351632663996.html?mod=WSJ-hpp-MIDDLENexttoWhatsNewsSecond#video%3DE3A6D82B-B923-414B-8ADA-8CE1D9401500%26articleTabs%3Darticle

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

The Autism News English, English autism, Autism's Rise, autistic, California, Los Angeles, Seeking Reasons

The Autism News | English

Clusters are associated with areas of greater parental education

Watch report from  KCBS

By UC Davis Health System

Researchers at UC Davis have identified 10 locations in California where the incidence of autism is higher than surrounding areas in the same region. Most of the areas, or clusters, are in locations where parents have higher-than-average levels of educational attainment. Because children with more educated parents are more likely to be diagnosed with an autism spectrum disorder, one need look no further for a cause, the authors say. The other clusters are located close to major autism treatment centers.

The clusters are located primarily in the high-population areas of Southern California and, to a lesser extent, in the San Francisco Bay Area. The researchers said that, while children born within the clusters during the study period were more likely to be diagnosed with autism, the majority of the state’s children with autism were born in adjacent areas outside the clusters.

For the rigorous study, published online today in the journal Autism Research, scientists examined nearly all of the approximately 2-1/2 million births recorded in the state of California from 1996 through 2000. About 10,000 children born during that five-year period were later diagnosed with an autism spectrum disorder, according to the California Department of Developmental Services (DDS).

After mapping the state’s birth cohort based on where the mothers lived at the time when their children were born, the researchers pinpointed birth locations of children who were later diagnosed with autism. The study looked for areas of higher incidence within each of the service zones of DDS’s regional centers, which coordinate services for individuals with developmental disorders like autism.

“This is the first time that anyone has looked at the geography of autism births in California in order to see whether there might be some local patches of elevated environmental risk. This method ignores unknown widespread factors (such as a regional pollutant) that could increase autism incidence,” said Karla Van Meter, the study’s lead author. Van Meter is an epidemiologist and was a doctoral student in the UC Davis Department of Public Health Sciences and at the Center for Animal Disease Modeling and Surveillance when the study was conducted.

“This spatial study was extremely rigorous because we developed a methodology that greatly improved accuracy in identifying areas of higher autism incidence. With so many possible environmental health risk factors, we see this method as generally useful for focusing studies on exposures that are elevated in such clusters,” Van Meter said.

However, the researchers said that in this investigation the clusters probably are not correlated with specific environmental pollutants or other “exposures.” Rather, they correlate to areas where residents are more educated.

“What we found with these clusters was that they correlated with neighborhoods of high education or neighborhoods that were near a major treatment center for autism,” said senior author Irva Hertz-Picciotto, a professor of public health sciences and a researcher with the UC Davis MIND Institute.

“In the U.S., the children of older, white and highly educated parents are more likely to receive a diagnosis of autism or autism spectrum disorder. For this reason, the clusters we found are probably not a result of a common environmental exposure. Instead, the differences in education, age and ethnicity of parents comparing births in the cluster versus those outside the cluster were striking enough to explain the clusters of autism cases,” Hertz-Picciotto said.

Autism is a neurodevelopmental disability characterized by impaired social development and communication and restricted, repetitive behaviors. It is considered a lifelong condition that develops by the time a child is 3 years old. The researchers limited their study to the five-year period between 1996 and 2000 in order to allow all of the children born during that time to grow to an age by which they probably would have received a diagnosis — 6 years old.

Van Meter said that the increased risk of autism in these areas is roughly a doubling of the incidence of autism over the incidence in the surrounding zone. For example, for the cluster area located in the service zone of the San Diego Regional Center, the autism incidence was 61.2 per 10,000 births and, in the rest of the Regional Center service zone, 27.1 per 10,000 births. For the Harbor Regional Center the incidence was 103.4 and 57.8, respectively. Van Meter added that it is important to remember that most of the children with autism were not born in the cluster areas.

In Southern California, the areas of increased incidence were located within these Regional Center service zones:

1. The Westside Regional Center, headquartered in Culver City, Calif., which serves the communities of western Los Angeles County, including the cities of Culver City, Inglewood and Santa Monica;
2. The Harbor Regional Center, headquartered in Torrance, Calif., which serves southern Los Angeles County, including the cities of Bellflower, Harbor, Long Beach and Torrance;
3. The North Los Angeles County Regional Center, headquartered in Van Nuys, Calif., which serves the San Fernando and Antelope valleys — two clusters were located in this regional center’s service zone.
4. The South Central Los Angeles Regional Center, headquartered in Los Angeles, which serves the communities of Compton and Gardena;
5. The Regional Center of Orange County, headquartered in Santa Ana, Calif., which serves the residents of Orange County; and
6. The Regional Center of San Diego County, headquartered in San Diego, which serves people living in Imperial and San Diego counties.

In Northern California, the areas of increased incidence were located within these regional centers’ service zones:

7. The Golden Gate Regional Center, headquartered in San Francisco, which serves Marin and San Mateo counties and the City and County of San Francisco. Two clusters were located within the Golden Gate Regional Center’s service zone; and
8. The San Andreas Regional Center, headquartered in Campbell, Calif., which serves Santa Clara, Santa Cruz, Monterey and San Benito counties.

Two areas of increased incidence were located in Central California regional centers’ service zones:

9. The Central Valley Regional Center, headquartered in Fresno, Calif., which serves Fresno, Kings, Madera, Mariposa, Merced and Tulare counties; and
10. The Valley Mountain Regional Center, headquartered in Stockton, Calif., which serves Amador, Calaveras, San Joaquin, Stanislaus and Tuolumne counties.

The South Central Los Angeles and Valley Mountain Regional Center autism clusters were listed as “potential clusters” because their clusters met a reduced set of statistical conditions.

All of these areas were identified using a sophisticated new biostatistical testing procedure developed by Van Meter in collaboration with study co-author Lasse Christiansen and constructed on Christiansen’s earlier statistical work. This method looked for combinations of events, in this case, autism, within a set of locations, in this case, births, whose occurrence would not be expected to occur at random. This is the first application of that method. UC Davis undertook the epidemiological study as a step toward identifying geographic risk factors for autism in California, Van Meter said.

The study also examined demographic factors recorded on the children’s birth records that are known to be associated with both autism and residential location. These included having an older parent — a known autism risk factor. The researchers found a statistically significant but small association of the cluster areas with older parental age at the time their child was born.

Hertz-Picciotto said that the findings do not counter the idea that the environment plays a role in autism, but rather, help to focus attention toward certain types of exposures.

“Because of the strong link between demographics, particularly parental education, and the locations of clusters, other explanations for these pockets of high autism incidence, such as localized sources of exposure, are not likely,” Van Meter explained.

“The risk for a child with highly educated parents to be diagnosed with autism is probably not caused by the location of the mother’s residence or any local shared environmental exposures,” she said. “Our result indicates that the most likely sources of environmental hazards for autism in California are in or around the home or else are widespread.”

“The strong link between demographics, particularly parental education, and the locations of the clusters validated the effectiveness of the statistical method that we employed because it successfully identified areas where a known risk factor was concentrated,” she added.

Other study authors include Lasse Christiansen of the Technical University of Denmark, Lyngby, and Lora Delwiche, Rahman Azari and Tim Carpenter, all of UC Davis.

Source: http://www.ucdmc.ucdavis.edu/newsroom/newsdetail.html?key=3479&svr=http://www.ucdmc.ucdavis.edu&table=published

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

The Autism News English autism, autism clusters, autistic, California, research, researcher, researchers

The Autism News | English

Andy Gulley gets instruction from wellness coordinator Jamie Kennedy as students learn to improve core body fitness. Young men with asperger’s syndrome live in a residential program in Melbourne where they are encouraged to socialize, stay fit and operate better in society. (GEORGE SKENE, ORLANDO SENTINEL / September 12, 2009)

By Linda Shrieves | Orlando Sentinel

Most parents dream of sending their kids off to college someday. But for parents of autistic children, even high-achieving kids with Asperger’s syndrome, college often seems like the impossible dream.

Dave and Kim Kennedy thought they would have to support their son, Chris, for the rest of his life. Diagnosed with nonverbal learning disorder, a form of autism in high school, Chris fought bouts of depression. Though academically he was a high achiever, socially, he didn’t like to talk to others, preferring to hide in books.

Now 25, Chris is finishing his undergraduate degree in psychology at the University of Central Florida and is headed for graduate school. He’s well-spoken, polite and funny.

And his parents credit the College Internship Program in Melbourne, one of four campuses across the nation that help students with autism-related disorders prepare for college – and for life.

Students – most of them high-functioning and with disorders such as Asperger’s syndrome and nonverbal learning disorder – live in two-bedroom apartments and attend classes at nearby Brevard Community College. They also take classes at the program in social skills, organizing their time and schedules, while learning how to fit into society.

The program was created eight years ago by psychologist Michael McManmon, after he was diagnosed with Asperger’s syndrome. After a career spent running group homes for learning-disabled students and emotionally disturbed students, he changed his focus.

“I thought, ‘What would someone with Asperger’s who’s going to college need to be able to function in life?” said McManmon. “That’s why we came up with our comprehensive curriculum.”

Now CIP operates four campuses across the country – in Massachusetts, Indiana, California and Melbourne – and is one of only a handful of places in the country where young people with Asperger’s can attend college while getting an array of support services to help them succeed. Another, called the College Living Experience, has five locations around the country, including a program in Fort Lauderdale.

The 14 students currently enrolled in Melbourne hail from all over – Texas and South Dakota and Washington state. The program, like autism itself, is disproportionately male. Of the 14 students in the program – 13 are boys.

“Typically, when a student comes in, they’ve gone to college somewhere else and failed,” said Joan Williamson, director of CIP’s Brevard campus. So they start off slowly, taking one or two classes at Brevard Community College while taking a wide variety of classes inside the CIP.

Every day, for instance, students attend an 8 a.m. class to mentally prep them for the day ahead. Twice a week, they meet with academic advisers to discuss upcoming projects, homework and tests and how to manage their time.

And, because people with Asperger’s syndrome are often socially handicapped, the staff spends months teaching them how to navigate social situations – how to look in someone’s eyes when speaking to them, how to conduct a conversation, how to pick up physical and verbal cues. They take field trips to restaurants, where they work on talking to waitresses.

They learn life skills as well, including how to balance a checkbook, cook and clean for themselves, and do their own laundry. And though social mixers might be a part of normal college life, it’s new to most of these students. So their advisers set up a “grill and chill” happy hour every Friday afternoon, where the students grill dinner and learn to mingle.

For a group more comfortable playing video games and avoiding eye contact, happy hour is hard work.

“Most of our students will never be social butterflies,” said psychologist Debra Sloane. “But they’ll be able to say good morning when they see their colleagues at work.”

This intensive residential counseling program isn’t cheap. Depending on how much help a student needs, it ranges from $30,000 to $40,000 a year. Some scholarship money is available, but many parents say it’s an expense they’ll pay willingly.

“My son is getting his inheritance now,” joked Kim Graham of Daytona Beach, whose 18-year-old son Matthew started the program this summer.

Originally diagnosed with Attention Deficit Hyperactivity Disorder, Matthew did well academically in elementary school, but his behavior and outbursts became a problem. As he got older, it became more apparent Matthew was different. Kids picked up on it and began picking on him. When he got beat up in a bathroom in sixth grade, his parents began home-schooling him.

Two years ago, a neurologist diagnosed Matthew with Asperger’s and the pieces of the puzzle began to make sense to Kim Graham.

The Grahams were sold on CIP after attending an open-house. There, Graham met the president and vice president of the small student council – and was impressed. “You could tell these kids had the same difficulty my son had growing up,” she said. “But they seemed very well adjusted. They were very happy there.”

Some of the students, she said, didn’t want to go home – even on school breaks.

And for a kid like Matthew, who has always struggled to make friends, that’s an answer to prayers, said Graham.

“Finally,” she said, “he is not the odd man out.”

Source: http://www.orlandosentinel.com/features/orl-autism-college-091209,0,511693.story

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

The Autism News English asperger's syndrome, autistic children, California, college, College Living Experience, Dave Kennedy, Fort Lauderdale, High School, Indiana, Kim Kennedy, Massachusett's, Melbourne, University of Central Florida

The Autism News | English

By Michael Bernick | SFGate

The California State University East Bay campus in the Hayward hills is the site of an unusual experiment in higher education for people with autism. Starting in the fall quarter, college-age autistics will be encouraged to attend and build an educational community; one that draws on the autistics’ unusual academic strengths. The experiment will test the possibilities for autistics in a university setting, and more generally the possibilities for a range of students with disabilities.

Twenty years ago in California and across the nation autism was largely invisible. Today, rarely a day goes by that there is not an article regarding autism in the news media. The shelves of bookstores and libraries are filled with books on causation of autism, early intervention, parenting and even “warrior mothers” of autistics.

The state Senate has formed a Senate Select Committee on Autism and Related Disorders, the second such committee formed in the past four years. A Senate report estimates that by the year 2012 at least 70,000 autistics will be registered with the state’s Regional Center system, and the number of Californians with a condition on the autistic spectrum will number more than 350,000. The emerging Center for College Students with Autistic Spectrum Disorders is an attempt to open wider higher education for autistics. The young adults with autism, born in California in the late 1980s and early 1990s when the number of diagnosed cases of autism grew geometrically, are now reaching college age. They and their parents are faced with life after high school. In particular, they are challenged to find alternatives to a life of dependency and Social Security payments that has been the main lot of adult autistics in California.

An estimated 70 percent of adults with autism in California are unemployed, with the majority enrolled in the Supplemental Security Income/Social Security Disability Insurance systems. Much of the growing literature on autistics focuses on their limitations and disabilities: the socially awkward behaviors, the large gaps in cognition and conceptualization, the self-stimulating behavior like spinning or rocking and self-talking.

But it is also true that many students with autism possess academic skills more advanced than many students in computation, observation and documentation. They often bring a different way of looking at the world and a singular creativity. Can these skills and insights be harnessed in ways that allow the students with autism to succeed in college and in the larger world and work world? This question is central to the experiment about to begin in Hayward. While its outcome is uncertain, we can be certain of a few of the elements needed for any success.

One key element will be the involvement of parents. At a time when public university resources are declining, the parents will need to bring a heavy investment of time and financial resources to the center. A second key element will be the ability of the students with autism to build their own network of mutual support. As longtime disability rights advocate Catherine Baird notes, students with disabilities cannot depend on the kindness of others. A critical mass of students with autism needs to exist at a university, and these students need to provide the social and academic support for each other.

A third key will be the university itself, and the evolving role of higher education in our state’s economy. The California State University system for years has done the heavy lifting in higher education, producing the teachers, nurses and technicians needed in California, as well as a range of other professionals. This initiative builds on the CSU’s role as most responsive to the state’s changing job structure and changing demographics.

Imagine Raymond Babbitt of “Rain Man” in college. Might it not be a better alternative for him, and much less expensive for society, than institutionalization or the SSI/SSDI government system? Might he even bring unusual skills that can enrich university life for others?

Michael Bernick, former director of the California Employment Development Department, is the chairman of the advisory board of the CSU East Bay autism center.

Source: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2009/08/03/EDPN193F67.DTL

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

The Autism News English autism, autistic, California, California State University East Bay, Hayward hills, higher education, Michael Bernick, people with autism, Social Security Disability Insurance system

The Autism News | English

By Mary Ann Roser  | Salud

Autism researchers are recruiting 1,200 pregnant women who already have a child with autism for one of the largest studies to investigate early risk factors for Autism Spectrum Disorders, which now affect one in 150 children.

The researchers plan to follow the women to see if they can identify possible environmental factors and genes that might play a role in autism, according to information about the Early Autism Risk Longitudinal Investigation, also known as the EARLI study. It is being funded by the National Institutes of Health and Autism Speaks, a nonprofit advocacy organization.

The study sites are in Pennsylvania, California and Maryland, and although the women must live in one of the study areas to take part, the findings could be far-reaching. Results won’t come for several years, however. Based on a news release about the study, its goal is to assess the prenatal experience and the baby’s development through age 3.

One of the most frustrating things about autism is that its causes are largely unknown. Genetics are believed to be involved, and while some parents blame childhood vaccinations, there is no scientific evidence that vaccines cause autism.

Source: http://www.statesman.com/blogs/content/shared-gen/blogs/austin/health/entries/2009/06/08/big_autism_study_seeks_familie.html

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

The Autism News English Autism researchers, autistic, California, early risk factors, have a child with autism, Maryland, Pennsylvania, pregnant women

The Autism News | English

By Karl Taro Greenfeld | Time | Partners with CNN

Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy. And having spent 15 years at the Fairview Developmental Center in Costa Mesa, Calif., a state facility, Noah has picked up the con’s trick of lashing out before anyone could take a shot at him.

Noah’s autism has been marked by “three identified high priority maladaptive behaviors that interfere with his adaptive programming. These include banging his head against solid surfaces, pinching himself and grabbing others,” according to his 2004 California Department of Developmental Services individual program plan (IPP). Remarkably, that clinical language actually portrays Noah more favorably than the impression one would get from a face-to-face meeting. (See six tips for traveling with an autistic child.)

Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is nondegenerative and nonterminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today’s children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society.

We are largely unprepared to deal with this crisis. Autism funding and research, so far, have predominantly focused on children. When I have visited autism conferences, there have been exceedingly few research projects devoted to low-functioning adult autistics. It remains difficult for families of adult autistics to find the programs they need, to access those services that are available and even to locate medical professionals and dentists who can handle adult autistics. Too much of the burden rests on the families themselves, who remain in the picture as caregivers, advocates and, too often, the only party with the autistic adult’s best interests in mind.

Parents, of course, love their children. When I used to accompany my parents to visit Noah at Fairview, we would sometimes see other parents visiting their middle-aged “boys” — some of them strapped into helmets because of their self-injurious behavior — who walked with the same stiff-legged gait, bobbed their heads from side to side, twiddled rubber bands or twigs in their hands and sometimes smacked their foreheads with their fists. They were unlovely men, I thought, lost, impossible to like. But once the parents were gone, who was supposed to keep making these visits and these phone calls checking up on their sons and attending these meetings with the administrators and bureaucrats and caregivers to advocate on behalf of the lost men? That will end up being me, or people like me, the siblings. We will be the ones left caring.

My family served for the first 14 years of Noah’s life as a sort of monument to my parents’ love for their autistic son. We functioned as a Noah-support group. Almost as soon as I was aware of myself, there was Noah, a perpetual source of worry and concern because of his delayed development. He wasn’t turning over, crawling, walking, doing anything on schedule except talking — and he soon regressed out of speech. My parents began then the lacerating pilgrimage from specialist to specialist, seeking, first, an explanation for this delayed development and then, finally, desperately, a cure, a therapy, hope.

In the late 1960s and early ’70s, autism was considered a rarity in the U.S., so uncommon that many pediatricians believed they had never seen a case. Treatment was laughable: the dangerous Freudian inanities of Bruno Bettelheim and his now widely discredited methods, the talk therapy of the psychoanalytic community, whose members wanted to treat the parents rather than the child (the blame-the-parents approach). We moved from New York to Los Angeles in search of a cure for Noah. There, at UCLA, new behavioral programs, the operant-conditioning and discrete-trial therapies that now dominate autism treatment, were being pioneered by psychologists like O. Ivar Lovaas.

Noah was an early patient of Lovaas’, yet the success that Lovaas would have with some of the autistic children he worked with eluded Noah, who remained among the lowest-functioning cohort — nonverbal, unable to dress himself, not toilet-trained until he was 5. Lovaas soon told my parents that he had gone as far as he could with Noah, that he was now focusing on younger children. (I have since heard of numerous children who also, as one parent I know put it, “flunked” Lovaas.) It was an early disappointment but only a precursor of so many to follow.

In the late ’70s, my mother, frustrated at the lack of care and attention given to special-education children, who actually had fewer school hours and more days off than “normal” children did, opened her own day-care center for the developmentally disabled. By this time, Noah was 14 and as tall as my mother. My father, already in his 50s, was soon diagnosed with a heart problem; he has since had open-heart surgery. My mother, who had been Noah’s most assiduous and faithful teacher, spending hours a day at a table in his room, constantly trying to get him to repeat sounds or tie a string, was exhausted. Both of them felt they couldn’t take care of him at home anymore, that it had become a matter of their survival or Noah’s. My parents reluctantly began looking for a place for Noah; a year later, they chose a group home in the San Fernando Valley. (See six tips for traveling with an autistic child.)

When we arrived, we were shown the room — four beds, three along one wall and the other in a corner, two windows with vinyl draperies — that Noah would share with three other boys. My parents signed some paperwork and showed the staff how to use the rice cooker they were donating so that Noah could still eat his favorite food. My mother had sewn labels into all his clothes and prepared a huge stack of gyoza dumplings for him. My parents were given additional forms to sign, including one that allowed the use of “aversives” — hits, slaps, spankings.

It wasn’t forever, my father believed, as if he had packed his son off to a military academy for some discipline. But he knew, he already knew, that this felt wrong.

My mother was crying.

Noah bounced on a leather sofa, uninterested, and then reclined on his elbow. He didn’t know this was forever; he didn’t even know he wasn’t coming home with us.

We left him sitting there. He waved to us, a weak, indifferent, limp-wristed gesture. Goodbye, like he didn’t care.

Driving away felt like a crime.

That was the first of half a dozen residential placements for Noah. Some were better than others, but none of them was a place you would want to put your own child.

Fairview developmental center was Noah’s last institutional stop. Built during the 1950s, Fairview is a complex of stucco bungalows spread over 100 acres (40 hectares) next to a golf course. Noah lived in Residence 14, one bungalow among about 50. In recent years, as the state has embraced a program known as Community Care, with the goal of moving developmentally disabled adults, including the severely autistic like Noah, from state facilities to local supported-living homes, these bungalows have been gradually shuttered. The money spent maintaining vast complexes like Fairview, the state believes, should instead be filtered through local agencies. Many of the higher-functioning developmentally disabled or autistic adults were never put into the state system to begin with, leaving the more difficult cases like Noah in facilities that increasingly rely on pharmaceuticals to treat any and all developmental and behavioral challenges.

Over the years, we noticed that each time we visited, Noah had a new scar, a black eye or a chipped tooth. In clinical parlance, these were Noah’s “unobserved, self-inflicted injuries” — or USIs. One day, Noah had a dozen thick, black stitches on his forehead. As Noah’s medications increased, so too did the number of USIs he suffered. Noah was already on Trileptal, Zyprexa and oral and injected Ativan. The collective side effects of these three drugs filled three pages of his IPP. I’ve looked and never been able to find a study of how they interact in “normal” individuals or the autistic. Because Noah had reached the maximum legal dosage for each of these medications, the Fairview staff urged another new medication, the antidepressant Remeron. (It is important to note that Noah suffers from no other physical illness, ailment or handicap. His problems are entirely neurological.)

But the drugs always seemed to make Noah worse, we pointed out.

They told us the choice was ours: either more drugs or a transfer to another ward in the facility where the most dangerous and criminally inclined autistic adults were housed.

My parents and I were desperate to find a well-run supported-living situation for Noah, but they’re rare. When the state launched Community Care, numerous for-profit companies sprang up to house the developmentally disabled, each of whom is entitled to many thousands of dollars a year in state funding. The companies that have succeeded tend to work with higher-functioning autistic or developmentally disabled adults, those who pose little risk to themselves or others. Other companies are alleged to be providing inadequate care or even in some cases abusing clients. (See six tips for traveling with an autistic child.)

The risks of Community Care for families of the adult autistic or mentally challenged are numerous. Perhaps the greatest worry is that the state will cut the promised funding per client, leaving families to foot the bill. Institutions like Fairview, flawed though they sometimes are, are often necessary for care of the lowest-functioning or violently autistic. The seemingly benign term community care, when it is invoked by conservative state representatives in domed capitols, is too often a code word for budget-cutting. The concept of moving the autistic into loving group homes where they will be taught or looked after is Edenic but inadequate to society’s needs. For the high-functioning, such assisted-living situations are a better alternative than institutionalization; for the low-functioning, the concept is often better than the reality. What happens if the supported-living home we find for Noah goes belly-up or loses its license or is just plain corrupt? Then where would Noah go? My parents simply can’t care for him at home, nor could I.

And yet by 2005, my brother seemed almost in critical condition; we had no choice but to find yet another new place for Noah.

When I was writing my book about my brother, Boy Alone, I wished I had a story of hope and salvation. It is miracles that sell books. There seems to be an insatiable demand for narratives that end in triumph over an affliction: the cripple walks, the mute speaks, the autistic boy laughs and hugs and cries. We hunger for that uplifting journey, as opposed to the cruel odyssey I had to tell. What did I have to offer? My adult brother, still autistic, still nonverbal, still lost. As much as I hope that all the autistic boys and girls will get better, and as much as I can encourage their families to fight with all the hope they have, I also know that they will not all recover. The boy or girl will grow up, and there won’t be a miracle; instead there will be an effort, something like what my family goes through every day, to figure out what to do.

We did, however, catch our own small break three years ago. Through the Westside Regional Center, my parents found out about Diverse Journeys, an assisted-living program willing to place Noah in a rented house in Los Angeles closer to my parents’ home and therefore an easier commute for their weekly visits. Noah lives in a two-bedroom house with a roommate, a “normal” person, whose rent is partly subsidized in exchange for the attention she must pay to Noah when she is home. A rotating series of caregivers take Noah to the park or for walks or to fast-food restaurants during the day.

The program has made some real progress in weaning Noah from some of the medications he had been taking, cutting him down to two drugs from four. And the mysterious scars and bumps and bruises he was getting, what Fairview termed USIs, have largely ended. So far, Noah’s assisted-living program represents a great improvement over Fairview, and my parents and I are thankful every day for this change in Noah’s circumstances.

When Noah is happy, it is a stark, uncut ebullience, rising, as my father wrote in his first book about our family, A Child Called Noah, “from a deep, pure place.” The joy emanates from him with such force that he will run toward me with his wide smile and rub his head against my shoulder in an almost feline gesture of pleasure. On days when Noah is in a good mood, when he is humming an up-tempo version of his melody of repeated, nonsensical syllables, we are again reminded that he is capable of great happiness.

Yet on some visits he is awful. He has good moods and bad moods. Just like me.

Is Noah happier in his new situation? Perhaps a little. He can never say.

Noah’s condition persists, an immovable psychic object. As a family, we lived in the present, from crisis to crisis; my parents always mustering the energy for a response. My father is in his 80s now, my mother in her late 70s. They will go on as long as they can. Then I will try to step in.

Will I always be there for Noah, as my parents have been?

I wish I could say, Yes, definitely, I will be there.

But I honestly don’t know.

Greenfeld is the author of Boy Alone: A Brother’s Memoir (Harper), from which this article is adapted

Source: http://www.time.com/time/magazine/article/0,9171,1898322,00.html?iid=tsmodule

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

The Autism News English autism, California, Costa Mesa, English, Fairview Developmental Center, Growing Old, Noah, struggles

The Autism News | English

By Sandy Kleffman | Contra Costa Times

California saw a twelvefold increase during the past two decades in the number of autistic people who are receiving services through regional centers, a new state study reveals.

The dramatic rise in autism has broad implications for California families, taxpayers and social service agencies.

“This is a shocking recognition of the challenges we face, today and into the future,” said Rick Rollens, the father of an autistic child and a co-founder of the Medical Investigation of Neurological Disorders Institute at UC Davis.

From 1987 to 2007, the number of children and adults with autism served by regional centers rose from 2,701 to 34,656, notes a study released this week by the state Department of Developmental Services.

That is a nearly 1,200 percent increase. By contrast, the state’s general population grew by 27 percent during that time frame.

Other disabilities saw much smaller growth rates. Regional center clients with mental retardation increased by 95 percent, cerebral palsy by 73 percent, and epilepsy by 66 percent.

People who have autism now outnumber those with cerebral palsy in the state, and they will soon surpass those with epilepsy.

Autism is a severe developmental disorder marked by communication difficulties, an adherence to routines and a lack of interest in socializing with others.

No one knows what causes the disorder, but many experts now believe one or more environmental factors trigger autism in genetically susceptible children.

The latest findings highlight the urgency in discovering a cause, Rollens said. He added that it is ironic that the report is being released shortly before the regional center system faces a $100 million budget cut beginning in July.

This is the third major autism study produced by the state. The numbers understate the amount of autism in California, said Julia Mullen, deputy director of the community services and support division of the state Department of Developmental Services.

The statistics include only people who are receiving services through regional centers, which represents about 75 to 80 percent of the autistic population, the study estimates.

The numbers also include only those with classic autism. For the most part, people with other autistic spectrum disorders, including Asperger’s syndrome and Rett’s disorder, are excluded from the statistics.

In a finding with important ramifications for the future, the study notes that within the next five years, more than 4,000 teenagers who have autism will reach adulthood. They will be added to the 6,000 adults already in the regional center system.

By 2018, the study estimates, the number of adults with autism will exceed 19,000. It is crucial, Rollens said, that the state develop the infrastructure to serve these families, despite the tight financial times.

Mullen said her agency has developed guidelines on diagnosing autism and effective interventions. It also has placed autism specialists in each of the 21 regional centers to work with the community on approaches and programs, she said.

The study reveals that the ratio of males to females who have autism continues to increase. Today, nearly five boys have the disorder for every one girl.

The percentage of people who have both autism and mental retardation has dropped significantly, a trend that may provide clues for those trying to solve the autism puzzle.

Rollens noted that the state does not have experience in dealing with thousands of adults who have autism, but will need to prepare for what is often a lifelong need for care.

“The impact of what we see in these numbers is sobering,” he said.

Source: http://www.contracostatimes.com/california/ci_12310147

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

The Autism News English autism, California, English, increase, statistics, stats, twelvefold

The Autism News | English

By ABC • Bakersfield News • Kero 23 TV

BAKERSFIELD, Calif. –  “Bad Girl Designs” continues to develop its clientele of costumers seeking the abstract look all while its owner battles a socially debilitating disease. Between the all absorbing narrow interests, the structured routines, or the speech and language problems Asperger’s syndrome can grip a person’s everyday interactions with the outside world.

Owner of “Bad Girl Designs” Gabrielle Lopez has dealt with this high – functioning form of autism for a decade now. Lopez demonstrated to ABC 23 how she copes with this socially awkward condition.

Imagine having a disease where interacting with people on a daily basis was one of your biggest struggles. That’s the life Lopez a decade long fighter of Asperger’s syndrome. The shop specializes in all that is retro, vintage, and well just plain different. Bad Girl Designs personal knack for the flare is something that Lopez cherishes. For Lopez the hardest part is dealing with her unique clientele, “I need a name tag saying be patient with me I have Asperger’s.” The boutique made the move from the Golden State Mall to downtown on 19th street in the past year, a spot where Lopez envisions her homemade touches to the store flying off the shelf.

Lopez told ABC 23 her heart continues to drive the store while every day she learns more about the disease that has stuck with her for the past 10 years. Dr. Arnold Chun, a physician at Kern Regional Center said their is no direct cure for Asperger’s . However, certain medications can help those with the syndrome.

Source: http://www.turnto23.com/news/19367811/detail.html

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

The Autism News English asperger, Bakersfield, California, English, shop owner

The Autism News | English

The Department of Managed Health Care declines to require carriers to pay for applied behavior analysis, an expensive therapy that insurers contend is an educational service, not medicine.

By Lisa Girion – March 10, 2009

California regulators said Monday that insurers must provide speech, occupational and physical therapies to their autistic members but rejected pleas to require insurers to cover the cost of behavior therapy that aims to help patients live in society.

At issue is so-called applied behavior analysis, a therapy that teaches patients skills such as self-feeding and stopping injurious behaviors such as head banging. The therapy can cost as much as $70,000 a year per patient.

Parents of children with autism have argued in lawsuits and in complaints to regulators that insurers, by refusing to pay for an array of autism care, are ignoring the Mental Health Parity Act. The 2000 state law requires insurers to treat mental conditions the same as medical conditions.

Autism is the fastest-growing serious developmental disability in the U.S., more prevalent than childhood cancer, juvenile diabetes and pediatric AIDS combined. There are an estimated 185,000 Californians with autism.

The state now treats about 37,000 significantly impaired autistic children, delivering a variety of services, including applied behavior analysis — at a cost of more than $320 million a year.

The disorder impairs communication and socialization and is often marked by repetitive behaviors such as rocking and head banging. Its cause is unknown, and there is no cure.

The state’s major insurers and HMOs routinely refuse to pay for applied behavior analysis, arguing, most recently, that it is an educational service, not medicine. The insurers also say that covering applied behavioral analysis will drive up premiums for everyone, although studies from other states have found such increases to be minimal.

Parents disputing the denials have been winning appeals to regulators in recent months as research on the effectiveness of the therapy has become more widely recognized.

In 15 of 16 recent disputes over insurance denials of applied behavior analysis for individual children, state-impaneled physician-reviewers have declared the therapy to be medically necessary. Those decisions required the insurers to pay for the treatment. The 16th case is pending.

The Department of Managed Health Care stepped into the controversy Monday, sending insurers a letter seeking to clarify their coverage obligations to cover autism and related disorders.

Parents lauded the department for making it clear that insurers must cover speech, physical and occupational therapies for their autistic members. But they were disappointed by its failure to address applied behavioral analysis.

Some said the letter set up the likelihood that parents would have to fight case by case to convince the department that the therapy should be covered. Only if they won that round would parents be able to take their case to an independent medical review panel, where they have been winning.

If not, it could be game over for parents.

“I have a problem with their staying silent on the most effective therapy,” said Bay Area parent advocate Kristin Jacobson.

“Does every child who needs insulin — or cancer treatment — have to take it all the way to the Department of Managed Health Care?” she said. “This is the only thing where every family has to fight it every time. And that didn’t stop today.”

Applied behavior analysis teaches skills by breaking them down into numerous steps and drilling them with positive reinforcement.

Some studies have shown that as much as 47% of children who receive the therapy are able to enter school with no further intervention and few, if any, symptoms of the condition, said Gina Green, executive director of the National Assn. of Professional Behavior Analysts.

Eight states have laws that explicitly require insurers to cover certain autism treatments. In California there is no specific autism law. But autism is one of the conditions that was supposed to be addressed by the Mental Health Parity Act.

State officials defended the plan. “We’re doing all we can within the limits of the law to make sure what should be covered is covered,” said Tim LeBas, assistant director of the Department of Managed Health Care’s Office of Health Plan Oversight.

Department spokeswoman Lynne Randolph acknowledged that the department would review coverage denials for applied behavior analysis case by case, trying to distinguish medical applications of the therapy from educational ones.

“We would say yes in certain instances,” she said.

Kaiser Permanente and other insurers have vigorously opposed an interpretation of the law requiring them to cover the therapy.

The department’s letter said it would develop regulations to formalize the requirements on insurers and to “provide additional clarity through an open and public process.”

Kaiser said Monday’s letter was “a step forward” but left some issues unresolved.

Charles Bacchi, interim president of the California Assn. of Health Plans, said the trade group looked forward to gaining further guidance through ongoing regulatory audits with individual insurers, as well as through the development of new regulations.

The courts may influence the course of autism coverage as well. Kaiser is the target of two proposed class-action lawsuits that accuse the company of violating the Mental Health Parity Act and other laws by routinely denying medical care, including applied behavior analysis, to its members.

Scott Glovsky, a Pasadena lawyer representing Kaiser members in one of the suits, said it was a shame that the department failed to address applied behavior analysis therapy.

“ABA is what children with autism spectrum disorders need the most,” he said.

The decision applies to insurance policies held by more than 21 million Californians and supervised by the Department of Managed Health Care. That includes health maintenance organizations and some preferred-provider organizations offered by several companies, including Kaiser, Anthem Blue Cross, Blue Shield, Health Net and PacifiCare.

Harvey Rosenfield, founder of Consumer Watchdog, a Santa Monica advocacy organization, said the department might have crossed the line on “underground rule-making” by trying to change the rules by letter rather than through the formal adoption of regulations, which is a public process.

“This is a state agency winking at the HMOs and inviting them to deny claims to autistic children,” Rosenfield said. “This is going to be a license to steal for the HMOs, and they are giving it away without even holding a hearing, which is just an outrage, and also, I think, illegal.”

Source: http://www.latimes.com/business/la-f…,7333027.story

Please share this news with friends, family and also with your contact list on Facebook and MySpace.

The Autism News English autism, behavior analysis, California, English, expensive therapy, health care, insurance, medicine, patients