One in four U.S. parents believes some vaccines cause autism in healthy children, but even many of those worried about vaccine risks think their children should be vaccinated.
Most parents continue to follow the advice of their children's doctors, according to a study based on a survey of 1,552 parents. Extensive research has found no connection between autism and vaccines.
Twenty-five percent of the parents said they agreed "some vaccines cause autism in healthy children." Among mothers, 29 percent agreed with that statement; among fathers, it was 17 percent.
Nearly 12 percent of the parents said they'd refused a vaccine for their children that a doctor recommended. Of those, 56 percent said they'd refused the relatively new vaccine against human papillomavirus, or HPV, which can cause cervical cancer. Others refused vaccines against meningococcal disease (32 percent), chickenpox (32 percent) and measles-mumps-rubella (18 percent).
I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at email@example.com
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Sunday, February 28, 2010
Survey on Autism and Vaccines
Saturday, February 27, 2010
Missouri Bill Hits Snag
Sen. Chuck Purgason is holding up an autism insurance bill until his committee approves an unrelated bill reining in tax credits.
Yesterday, Purgason, R-Caulfield, abruptly canceled a meeting of the Governmental Accountability and Fiscal Oversight Committee, where autism supporters had expected their bill (SB618) to be approved.
The meeting was scrapped after a deal fell through to revive the bill (SB728) that would make tax credits subject to annual appropriation by the Legislature. It failed in Purgason’s committee earlier this month.
Purgason said in an interview that he was “trying to get some bills gathered up to vote out.” Asked whether the autism bill was linked to the tax credit bill, Purgason said: “It’s my intention to get both bills voted out.”
Thursday, February 25, 2010
You had a moral obligation to do the right thing for our kids, and you chose not to. You sent a message to my Sean that his future doesn't matter, that he is dispensible. So I am going to remind you, as often as I can, about my son Sean O'Keefe, age four, from Chesapeake. So maybe next time you have the opportunity to help him and others like him, you will actually have the guts to act.
Wednesday, February 24, 2010
An article in a forthcoming issue of a peer-reviewed medical journal, Current Opinion in Pediatrics, just posted online, makes this explicit.
The article cites “historically important, proof-of-concept studies that specifically link autism to environmental exposures experienced prenatally.” It adds that the “likelihood is high” that many chemicals “have potential to cause injury to the developing brain and to produce neurodevelopmental disorders.”
The author is not a granola-munching crank but Dr. Philip J. Landrigan, professor of pediatrics at the Mount Sinai School of Medicine in New York and chairman of the school’s department of preventive medicine. While his article is full of cautionary language, Dr. Landrigan told me that he is increasingly confident that autism and other ailments are, in part, the result of the impact of environmental chemicals on the brain as it is being formed.
Tuesday, February 23, 2010
Virginia Mandate Goes Down
Legislation that would have required many Virginia employee health care plans to cover a treatment for autistic children died Tuesday under business and insurance industry claims that its costs would hurt business.
Sen. Janet Howell's bill was tabled Tuesday on an unrecorded voice vote by a House Commerce and Labor subcommittee.
The defeat ends a 2010 legislative push by families of children with the neurological disorder to secure coverage for a treatment called applied behavior analysis.
"They were lobbied hard by the insurance and business lobbies not to stand up for children and families," said Mark Llobell of Virginia Beach, grandfather of an autistic child and one of several tearful relatives who consoled one another after the vote.
Monday, February 22, 2010
Autism and Marijuana
Legislators are still working out the details on a medical marijuana bill, including who will be eligible. But some users hope it will cover their mental health problems. Abigail Schweter says marijuana helps with the anxiety disorder she's suffered since she was raped in her childhood, more than pharmaceuticals like Zoloft, an antidepressant. And she thinks marijuana would also help her severely autistic son, who has started becoming violent.
"For those of us who chemically and medically need it, we're not using it to get high. We're using it to feel normal, to feel okay. And to be able to cope in our everyday life," Schweter says.
But Schweter and her son are likely to be disappointed, at least in the short run. Even if medical marijuana does get signed into law this year, it's unlikely to cover mental health problems. However, legislators say they will consider expanding coverage, two years down the road.
In an earlier story on ABC, however, at least one physician expressed skepticism about the approach:
"He is intoxicated. He's stoned," said Dr. Sharon Hirsch, a child psychiatrist at the University of Chicago. "It means that he's under the influence of a drug and may have an addiction. It can cause psychosis, may lead to schizophrenia. [There's] no evidence at all at this time and no reason to prescribe any kind of marijuana for a child with autism."
Sunday, February 21, 2010
Saturday, February 20, 2010
A bill aimed at solving a dearth of early treatment options for children with autism cleared its first legislative hurdle Friday.
HB311 would set up an Autism Treatment Fund in the Utah Health Department to be administered by a volunteer five-person committee. The measure calls for no state investment.
For now, funding would come from private donations from foundations and individuals, said sponsoring Rep. Becky Lockhart, R-Provo.
The money would fund grants to providers of early, intensive behavior therapy to children under age 8 who have been diagnosed with an autism spectrum disorder.
The bill was unanimously approved by the House Health and Human Services Committee and sent to the consent calendar of the House. [Audio of committee meeting here -- JJP]
Friday, February 19, 2010
Wisdom from Temple Grandin
"You know what working at the slaughterhouses does to you? It makes you look at your own mortality."
"When I was younger I was looking for this magic meaning of life. It's very simple now," she says. Making the lives of others better, doing "something of lasting value, that's the meaning of life, it's that simple."
How about meaning, I ask. What's the picture for that word? "Ok, now I'm seeing a mother saying your book helped my kid go to college—that's meaning. Or my kid got a job because of one of your lectures—that's meaning. Or a rancher comes up and says that piece of equipment works really well—that's meaning. Concrete, real stuff. On. The. Ground."
Thursday, February 18, 2010
Autism and Police
I did a little research and found out about Dennis Debbaudt, a professional investigator and law enforcement trainer who was the first to address the interactions between law enforcement and people with autism in his 1994 report Avoiding Unfortunate Situations.
He was also the father of a young man who has autism.
If anyone got it, it was Dennis.
Today, Dennis provides autism training and resources for law enforcement, emergency first responders, parents, educators, care providers, and the autism community. His training video, Autism & Law Enforcement Roll Call Briefing is in use by the Department of Homeland Security and hundreds of police agencies throughout the country. The video provides a quick and engaging education in autism that helps increase safety for both officers and individuals with autism.
West Chester Police are learning about Autism. Every police officer in the department will watch a video called "Autism and Law Enforcement."
It explains how to identify the signs of Autism and the best way to approach someone with the disability. The video gives real life examples of when officers were called to emergencies involving people with Autism.
Officers are learning that people with Autism don't react to situations like most other people. Captain Joel Herzog said he learned they are attracted to shinny objects.
"We're loaded with shinny objects, " said Herzog. They might want to reach out and want to touch an officer. In a normal situation you try to touch an officer on the street and they're not going to let you do that and you're going to take defensive action."
“I think that this shows that the police officers in Mahoning County, and in our area in general, really care about the people that they serve,” he said.
The training session included discussion and videos about communicating with people with autism, possible problems with interrogation and interviews and restraint and arrest options.
“In the training, everyone learned the value of calming body language, giving people extra time to respond and using clear language if at all possible,” Debbaudt said. “It is all based on officer safety but the key is to remember that these calls are going to take longer.”
Debbaudt's website is here. Here is a short video:
Wednesday, February 17, 2010
The Missouri House on Tuesday took the first step toward mandating that insurance companies cover certain treatments for children with autism.The legislation, given first-round approval on a voice vote, would require insurance companies to cover up to $36,000 annually in treatment for autistic children up to age 18 for applied behavioral analysis, or ABA.
House members need a final vote later this week to send the bill to negotiations with the Senate, which has passed legislation mandating $55,000 in annual coverage for children with autistic spectrum disorders to get ABA therapy.
Legislation that would compel insurers to pay for expensive but effective treatments for children with autism won overwhelming passage Tuesday in the state Senate despite opposition from mighty insurance and business lobbies.
On a 27-13 vote, Sen. Janet Howell's bill advances to the House, where a companion measure died on a tie vote in a subcommittee two weeks earlier.
The bill would mandate coverage by certain employee health plans for applied behavior analysis, the treatment that psychiatric and medical officials say is the most effective and promising for children with autism. Insurers say ABA is an educational service, not a medical one that should be covered.
Howell's bill restricts coverage to children from age 2 years through 6, and limits annual insurance outlays for ABA to $35,000. Because of the record $4 billion gap facing the next state budget, it exempts state employees from required coverage until 2015.
"This bill is so limited, and it breaks my heart it's so limited," Howell said. "But it's a small step, a baby step, for children with autism spectrum disorder and their families."
Tuesday, February 16, 2010
Opening Doors for Autistic Adults
Several of Arizona's leading real-estate groups have tackled a growing national housing problem in a new report, Opening Doors: A Discussion of Residential Options for Adults Living With Autism and Related Disorders.
During the next 15 years, more than 500,000 children with autism disorders will become adults. Now, most adults with autism live with their aging parents, who won't outlive their children. Autistic adults currently have few options for housing away from their families.
"The potential crisis in housing and services for this population is an issue not only for families and local communities, but for society as a whole," said Joe Blackbourn, a Valley developer and former board member of Southwest Autism Research & Resource Center
Monday, February 15, 2010
The R-Word and the A-Word
The latest battle over the R-word kicked into high gear with a Jan. 26 Wall Street Journal report that last summer White House Chief of Staff Rahm Emanuel blasted liberal activists unhappy with the pace of health-care reform, deriding their strategies as "[expletive] retarded." Palin, the mother of a special-needs child, quickly took to Facebook to demand Emanuel's firing, likening the offensiveness of the R-word to that of the N-word. Limbaugh seized the low ground, saying he found nothing wrong with "calling a bunch of people who are retards, retards," and Palin rushed to his defense, saying Limbaugh had used the word satirically. Comedy Central's Stephen Colbert took her up on it, calling Palin an "[expletive] retard" and adding, with a smile: "You see? It's satire!"
Though not nearly as widespread, there is a growing use of the word autism in a negative sense that does not deal with ASD. In November, the London Times led a story this way: "The Conservative leadership came under double attack today when two frontbench Eurosceptics resigned and a French minister accused the party of political `autism.'" In December, blogger Andrew Sullivan wrote: "At times, Bush's indifference to the system around him bordered on a kind of political autism."
Sunday, February 14, 2010
Autism and Hugs
New research suggests that sensitivity to touch, a common symptom of autism, might be caused by delays in brain development in the womb. The study looked at brain development in mice with Fragile X, a condition closely linked to autism. Researchers found that parts of the brain linked to touch developed late in Fragile X mice. Knowing these key development "windows" might help doctors find new treatments.
Saturday, February 13, 2010
LAT on DSM
The variety of criticisms reflects the fact that, compared with other fields of medicine, psychiatry lacks precision and that psychiatric classifications often have moral and political overtones.A useful article in The Economist explains DSM's evolution.
With all its imperfections, the DSM serves an important purpose for psychiatrists and doctors in general practice. That doesn't mean therapists can't be alert to specific complaints from their patients that confound or combine the categories. As with the Bible, in some cases the manual should be taken not literally but seriously.
Friday, February 12, 2010
Autism, Asperger's and DSM-V
The Asperger's Association of New England [AANE], a nonprofit organization with more than 3,000 members, has written a letter to the APA committee in charge of revising autism diagnoses explaining that Asperger's should remain separate, said Dania Jekel, the association's executive director. The group is currently trying to mobilize other organizations to speak out and do what they can to see that the diagnosis remains in the DSM V.
"This is their identity, which is really being taken away," Jekel said. "If everybody's sort of lumped together, we're going to lose that."
On its website, AANE elaborates:
AS provides an identity to a large and growing group of people.
“Asperger Syndrome” has become an indispensible key to self-understanding and self-acceptance for a rapidly growing multitude of children, teens, and adults. The AS diagnosis allows them to grasp and accept their unique combination of strengths and challenges, to become effective self-advocates, and to develop more adaptive life strategies. In two short words, the AS diagnosis explains to people with AS why they struggle in life despite their considerable gifts. A host of adults have embraced this identity and found humor and beauty, compassion and courage in it. Removing Asperger’s from the DSM would cause a devastating loss to people with AS, who have built precious, hard-won identities around the term.
Having the AS nomenclature helps create invaluable community.
People with AS and their families tend to be marginalized in their communities. AS is the key to finding face-to-face and/or online communities of similar people—people who can really understand each other’s experiences, and can support each other on their journeys. The term “Asperger Syndrome” is what allows them to connect to others like them.
Wednesday, February 10, 2010
The product of more than a decade of work by hundreds of experts, the proposed revisions are designed to bring the best scientific evidence to bear on psychiatric diagnoses and could have far-reaching implications, including determining who gets diagnosed as mentally ill, who should get powerful psychotropic drugs, and whether and how much insurance companies will pay for care.
"It not only determines how mental disorders are diagnosed, it can impact how people see themselves and how we see each other," said Alan Schatzberg, the association's president. "It influences how research is conducted as well as what is researched. . . . It affects legal matters, industry and government programs."
The American Psychiatric Association’s draft proposed diagnostic criteria for the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM) will include new categories for learning disorders and a single diagnostic category, “autism spectrum disorders” that will incorporate the current diagnoses of autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder (not otherwise specified).The recommended DSM-5 draft criteria for autism spectrum disorders include a new assessment of symptom severity related to the individual’s degree of impairment. The draft criteria also specify deficits in two categories: 1) social interaction and communication (e.g., maintaining eye-to-eye gaze, ability to sustain a conversation and peer-relations) and 2) the presence of repetitive behaviors and fixated interests and behaviors. Additionally, in recognition of the neurodevelopmental nature of the disorder, the criteria require that symptoms begin in early childhood. Clinicians must take into account an individual’s age, stage of development, intellectual abilities and language level in making a diagnosis. “The recommendation of a new category of autism spectrum disorders reflects recognition by the work group that the symptoms of these disorders represent a continuum from mild to severe, rather than being distinct disorders,” said Dr. [Edwin] Cook. In addition to specifying a range of severity of ASD, the criteria will include description of the individual’s overall development, course (e.g. regression), and language. “We expect that the proposed changes will improve the sensitivity and specificity of the criteria for autism spectrum disorders, so that clinicians may be able to more accurately diagnose these disorders.”
The change is welcome, because careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid, and there are clear benefits to understanding autism as one condition that runs along a spectrum.
When the American Psychiatric Association first recognized Asperger’s disorder in 1994, it was thought to be a subtype of autism. As the diagnosis became more common, it broadened the public understanding of autism as a spectrum. It helped previously undiagnosed adults to understand their years of feeling unconnected to others, but without bestowing what was considered the stigma of autism. And it helped educators justify providing services for children who, in the past, might have been unappreciated or even bullied because of their differences, but received no help from teachers.
Tuesday, February 9, 2010
Media and Autism
Andrews et al. (2002) found that parents of children with autism diagnosed after the MMR controversy was publicized in the media were more likely to report the onset of autism as just after MMR vaccination than were parents of children with autism diagnosed before the controversy. The impact of the media's coverage of this issue has had a significant and detrimental influence. Unfortunately, highly improbable events, extraordinary claims implying a conspiracy, and steadfast beliefs with little support beyond anecdote tend to given more coverage than sound information based upon empirically valid and peer reviewed research.
Ahearn adds: "Another typical tactic of the media is to present controversial topics as if there are two, equally relevant sides to the story." Some media critics see a similar "false balance" in coverage of other issues, such as climate change.
Monday, February 8, 2010
A woman's chance of having a child with autism increases substantially as she ages, but the risk may be less for older dads than previously suggested, a new study analyzing more than five million births found.
"Although fathers' age can contribute risk, the risk is overwhelmed by maternal age,'' said University of California at Davis researcher Janie Shelton, the study's lead author.
Mothers older than 40 were about 50% more likely to have a child with autism than those in their 20s; the risk for fathers older than 40 was 36% higher than for men in their 20s.
Sunday, February 7, 2010
For and Against Mandates
Having an insurance company pick up its share of what is prescribed by a medical doctor solves many problems. First, our kids with autism get the help they need. Second, our schools are better able to teach the kids they are trained to assist. A child with autism needs both medical and educational therapies and services to get better. We all know there are no free rides (again, think roads, bridges and tunnels,) so here's the catch. In order to have this occur, insurance premiums are forecasted to increase 0.4 tenths of 1 percent. That calculates to a projected $1.26 per month per policy — or $15.10 per year.
Parents of children with an autism diagnosis have made passionate appeals for the coverage mandate. Their emotional arguments are tough to resist, yet the studies cited above offer more reason to urge caution on a mandate that would likely never go away and that would cost the insured ever more money if the diagnosis rate continues to soar.
As awareness builds of autism, more parents are likely to look for signs of trouble and seek a diagnosis. That in turn will likely drive the prevalence rate up. Jon Bai, a federal government epidemiologist, calls the increased rate "a perplexing and urgent concern.”
The pro-mandate side may yet win the argument because the number of autism-diagnosed children is growing so quickly — and so inexplicably.
Read more: http://newsok.com/autism-studies-bolster-argument-to-act-slowly/article/3437471#ixzz0ertN2sqs
Saturday, February 6, 2010
Reagan and Lanterman
Frank D. Lanterman was a Republican State Senator from Pasadena, who was the primary author and force behind passage of California’s landmark disabilities law, now known as the Lanterman Developmental Disabilities Act.When negative reviews and press about the state-run “hospitals” for persons with developmental disabilities came to light in the mid-1960s, the state’s response was to try to build more hospitals. But Frank Lanterman asked a different question: What do families want for their loved ones? What do people with disabilities want, to live more productive lives?The Lanterman Act, signed into law by Governor Reagan in 1969 and substantially expanded in 1977, created a new model for services in California: A model based on inclusion, that empowered families and persons with disabilities to make meaningful choices about their own lives.
Friday, February 5, 2010
Aftershocks of the Lancet Retraction
Another casualty of the Lancet study is trust of medical research. Some parents were always skeptical about the study — after all, since it appeared, 10 of its 13 authors disavowed its conclusion linking the developmental disorder to vaccines. No other study found any such link.
But other parents are not letting go and insist there is a cause and effect between vaccines and autism.
"It’s very hard to be a parent in the information age," said Suzanne Buchanan, clinical director for Autism New Jersey. "There is so much information and it can be difficult to figure out what is credible and what is not." If a parent questioned a pediatrician who didn’t have the time to answer thoughtfully, the distrust grew.
Perhaps most troubling of all is the diversion of time, money and other resources on a theory that has now been thoroughly refuted. "We now need to put resources into more plausible theories," Buchanan said.
In the Los Angeles Times, Michael Fumento writes about an important externality:
Some groups claim only to oppose mandatory vaccines, but this ignores the need for what's called "herd immunity." That means a certain level of the population must be vaccinated (generally around 85% to 90%) so those unvaccinated are still protected.
Lack of herd immunity is what killed Gabriella "Brie" Romaguera. The New Orleans baby died of pertussis, or whooping cough. At one time, this disease afflicted more than 250,000 American children yearly, killing 9,000. Vaccinations reduced that to just 1,000 new cases annually by 1976; but by 2008, cases had soared to more than 10,000 annually.
Brie contracted the disease when she was a month old, too young for her first pertussis vaccine. "I'm not laying blame," her mother, Danielle, told me. "But people need to know they can infect other people's babies. It kills. People think these diseases don't exist anymore, but that's only because children are being vaccinated."
Thursday, February 4, 2010
- When should I be concerned?
- How can I understand what is happening?
- What caused this to happen and can this be prevented?
- Which treatments and interventions will help?
- Where can I turn for services?
- What does the future hold, particularly for adults?
- What other infrastructure and surveillance needs must be met?
Although considerable research has focused on the earliest phase of ASD, through early screening, improved diagnostics and early intervention, far less effort has addressed the adolescent, adult, and older adult phases of life. Minimal guidance exists for people with ASD across the spectrum and their families about the trajectories of ASD across the lifespan. Although the general assumption is that children who possess expressive and receptive language skills and coping strategies and who do not demonstrate significant challenging behaviors can sometimes excel as adults, while children who do not currently possess typical expressive language skills and who engage in significant challenging behavior will grow up to need long-term, 24/7 supports and services, the evidence base for these ideas is lacking. Scientists have not yet identified key prognostic factors or detailed information about how adults across the spectrum with ASD function, where they are, and how they are best supported. [emphasis added]
Wednesday, February 3, 2010
More on Autism Clusters
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.
A few weeks ago, NIMH posted an interview with Peter Bearman, the lead investigator for the Columbia study:
Tuesday, February 2, 2010
Temple Grandin Interview
Cases of autism are rising. Why do you think that is?
Some of it is probably due to the way autism is diagnosed. I saw people on the HBO lot that probably have Asperger’s but never got a diagnosis as a child. There has been an increase in regressive autism, children who develop normally, have speech, and then lose it. I think there’s something going on with some type of environmental contaminant. Some insult is getting to the child whose genes are susceptible to autism. I think we are going to be hearing more about epigenetics and autism. With epigenetics you look at how the genome responds to the environment. How things like toxins and diet and other things turn on the switches that regulate how certain genes are expressed.
“Autism pride” or neurodiversity is a growing movement. Do you think there needs to be a “cure” for autism?
I believe there’s a point where mild autistic traits are just normal human variation. Mild autism can give you a genius like Einstein. If you have severe autism, you could remain nonverbal. You don’t want people to be on the severe end of the spectrum. But if you got rid of all the autism genetics, you wouldn’t have science or art. All you would have is a bunch of social ‘yak yaks.’
Monday, February 1, 2010
State Mandates and Interstate Effects
Among states that mandate coverage for ABA and related therapies, at least seven set the annual coverage cap at $36,000, according to a survey of state laws by Autism Speaks. At least three have no cap.
And the financial drain autism places on families is so dire that those in states that don't mandate coverage often move to states that do.
Because West Virginia, like its namesake neighbor, doesn't mandate coverage, Scott Finn and his wife, Wendy Radcliff, moved from Charleston, W.Va., last fall to Florida, which mandates up to $36,000 annually in benefits for ABA and related treatments.
"The science is in, and there is a small window of opportunity to help your child and teach them how to think," Radcliff said of the family's decision to relocate near Tampa, Fla., for the sake of their 4-year-old autistic son, Maxwell Finn.