Autism and Hugs

A report in Newser:

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.

There is nothing wrong with this news item per se. But a common problem in autism reporting that internet regurgitation causes the loss or distortion of important details. Although the Newser account later notes that Fragile X is not the only cause of autism, All Headline News says that the syndrome is "better known as the cause of autism." In fact, only 5% of people on the spectrum have fragile X.

More important, many casual readers of the report may incorrectly infer that all autistic people have an aversion to hugs and other forms of touch. But they don't, so here's the problem. When parents first start to suspect that their child may be autistic, they desperately look for reassuring signs. If the child is physically affectionate, they may say to themselves, "Oh, he likes hugs, so he can't possibly be autistic." In such cases, they may delay seeking diagnosis and treatment.

LAT on DSM

Not long ago, it would have been odd for a revision of a diagnostic and statistical manual to be the subject of an editorial in a major newspaper. But such is the significance of the DSM that the Los Angeles Times is weighing in:

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.

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.

A useful article in The Economist explains DSM's evolution.

Autism, Asperger's and DSM-V

More reaction to the proposed revisions to the DSM. CNN reports:

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.

DSM-V

The American Psychiatric Association today launched the website for the DSM-V, the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (www.dsm5.org). DSM is the standard classification of mental disorders used by mental health and other health professionals for diagnostic and research purposes. The Washington Post explains its significance:

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."

One release is of particular interest here:

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.”

Roy Grinker, author of Unstrange Minds, supports folding Asperger's into ASD:

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.

Media and Autism

Bill Ahearn has sharply critical words for media coverage of 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.

Maternal Age

New research suggests more emphasis on material age than paternal age as a risk factor. The Wall Street Journal reports on an article in the February issue of Autism Research:

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.

A year ago, an HHS publication stressed paternal age.

See here for a related article in the American Journal of Epidemiology

For and Against Mandates

A Virginia resident makes the case for 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.

The Oklahoman cites recent prevalence studies to argue against mandates:

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

Reagan and Lanterman

Today would have been Ronald Reagan's 99th birthday. What does that have to do with autism? A website supporting California's Lanterman Act explains:

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.

Click here for a history of the Lanterman Act.

Aftershocks of the Lancet Retraction

The Lancet has retracted the paper that helped create international concern about a vaccine-autism link.

The Newark Star-Ledger editorializes:

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."

Strategic Plan

The Interagency Autism Coordinating Committee (IACC) has posted its updated strategic plan. IACC organized it around seven questions that concern ASD people and their families:

• 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?

The section on the future makes sobering observations on the current limits of our knowledge:

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]

In a related development, the American Psychiatric Association has postponed the release of the DSM-V until 2013. In April, the Neurodevelopmental Disorders Workgroup tentatively proposed a single diagnosis in place of Autism, PDD-NOS and Asperger disorder.

More on Autism Clusters

The Wall Street Journal reports:

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:

Temple Grandin Interview

In an interview with MSNBC, Temple Grandin talks about some major questions of autism policy:

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.’

State Mandates and Interstate Effects

Virginia legislators are considering an autism insurance mandate. A background article on the legislation suggests one of the side effects of interstate differences in such laws:

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.