Using Second Life

Ashley Phillips at ABC News reports on researchers using Second Life to aid in the improvement of social skils for people with Asperger's Syndrome.
"As a treatment, professionals that include occupational therapists and psychiatrists take patients through a series of exercises, in groups and individually, designed to help them learn social skills. In the center's new therapy, patients may have a job interview with a "boss" character or learn to ask another avatar out on a date. "

Study on Genetic Links to Autism

In an editorial by Evan Eichler and Andrew Zimmerman, The New England Journal of Medicine says:
"It has become clear that the solutions to autism will be neither simple nor uniform among patients with various autistic syndromes. At least 60 different genetic, metabolic, and neurologic disorders have been associated with autism and involve approximately 10% of patients, whose clinical presentations frequently vary, even among those with known disorders...these examples highlight a different paradigm for the genetic basis of autism. Rather than being an inherited disease, autism may be the result of many independent loci that rarely delete or duplicate during gamete production. Collectively, such de novo events might contribute significantly to the disease and explain why few genetic loci have been confirmed with the use of traditional linkage-based approaches...The discovery of significant associations for the rarer loci may require the screening of tens of thousands of DNA samples from patients rather than a few thousand samples. Deeper sample collection and new cost-effective genomic techniques may be needed..."

This is how mainstream media is reporting it:
"A rare genetic variation dramatically raises the risk of developing autism, a large study showed, opening new research targets for better understanding the disorder and for treating it..."

PBS Doc Premieres Tonight

"Today's Man", a documentary about a man named Nicky Gottlieb with Asperger's Syndrome, will be premiering tonight on most PBS stations. Here is an article by Felicia R. Lee about filmmaker Lizzie Gottlieb, Nicky's sister, from the New York Times. The PBS website for the film contains more information and a link to local listings.

Interview with "Unstrange Minds" author

Here's a highly interesting interview with Roy Richard Grinker, the author of Unstrange Minds: Remapping the World of Autism, on the Committee for Skeptical Inquiry website. The interview was conducted by Benjamin Radford.
Some excerpts:
"I wrote Unstrange Minds so that people can see that autism is universal and that autism awareness is increasing everywhere in the world. But the most important reason for writing the book—though this was not my original intention—was to tell the world a simple message: the increase in autism diagnoses is not a crisis but rather evidence that we’re finally beginning to address a kind of human difference that has for too long been misunderstood, misdiagnosed, and mismanaged. More than six decades after autism was first described by Leo Kanner, we’re finally getting it right, and counting it right."
"I thought I could articulate some of the cultural and scientific reasons behind the increase in rates and give a positive message: the higher rates are due to positive changes in the way we understand and treat neurological and psychiatric disorders."
"The reality is that (1) the higher rates mean that autism is a bigger public health issue than we ever realized; and (2) there is nothing mutually exclusive about saying there’s no epidemic and at the same saying that we’ve finally figured out what’s going on with people on the autism spectrum, and we need more research and services. I recently received an e-mail from a parent who decried my stance: “How can you say there is no epidemic of autism?” she wrote. “When I was in school, there were no kids with special needs in my school. Today, in my daughter’s school there are dozens.” Actually, that is my point. In the past autistic people were not included in our schools. Today they are. And that’s a very good thing.
Another big misconception is that autism is somehow new. I am frequently asked: If there is no epidemic, then where are all the adults with autism? The answer is easy, but also complicated. Finding adults with autism is very hard, not because they do not exist but because they are dispersed in our society. Some live in group homes, others in institutions, others are living and working among us in our everyday lives. Kids are easy to count because they are all in school, neatly recorded in school records. But adults are a different story."

Yale Child Study Center Director in NJ

For anyone in the area, Dr. Ami Klin, director of the Autism Program at the Yale Child Study Center, will present a free program on ASDs and AS on Wednesday, Jan. 23, from 7 to 9 p.m. at Adath Israel Congregation, 1958 Lawrenceville Road, Lawrence.
More details can be found here.
He is also presenting an all day workshop for educators the following day for $75.00.

Clinical Trials

I may have posted this before but it seemed worth revisiting. If you are looking for clinical trials related to ASDs, check out

www.clinicialtrials.gov

Here is a sampling on a search "autistic disorder".

Smart is not an Endgame

Penelope Trunk reminds us to pay attention to social skills - our own and our children's.

"And when you think about someone finding his way to success in the real world, consider the Wall Street Journal's list of traits that recruiters look for in business school candidates:
• Communication and interpersonal skills
• Original and visionary thinking
• Leadership potential
• Ability to work well on a team
• Analytical and problem-solving skills"

Test

Just testing out a change made nervously to my template. I am such a blog design coward!

Article on RDI

This article by Mary Jiminez from the Shreveport Times (Louisiana) describes one family's experience with RDI - Relationship Development Therapy. The price tag is $500-$800 per month, and it is not covered by insurance.

Autistic Brain Structure & Development

Wrongplanet posts an interesting article from the journal Neuron about the size of portions of brains in autistic children and autistic adults.

"Surprisingly, current research is showing different results in the brains of autistic children compared to data collected in adults. The very same structures that appear smaller in adult autistic brains appear much larger and overgrown in autistic children. "

This paragraph is kind of shocking:
"Considerations for developmental aspects of autism are becoming ever more important. Even gene-association studies may be inconsistent because the genes that cause and regulate differential development may not be the same as those genes that respond to these differences later in life, making it hard to define a clear set of “autism” genes. This means, that genes found in autism studies may be identifying genes involved with secondary issues and are not finding genes that have to do with developing autism directly. Indeed, many genes identified thus far in autistic patients have to do with regulating cell death in the brain and may only be expressed secondarily in response to the overgrowth of particular brain structures."

Contestant with AS on "America's Top Model"

Aspiring model Heather Kuzmich made it to the Top 5 on the current edition of "America's Top Model." Heather, has Asperger's Syndrome, and her experience is described in this article. I'm sorry I missed this. If anyone did watch it, please comment with your thoughts.

AS and Sleep

This should come as no surprise to parents of children with Asperger's. But at least they are studying it.
" The first known attempt to evaluate the sleep patterns of children with Asperper Syndrome (AS), taking into account sleep architecture and the cyclic alternating pattern (CAP), finds that children with AS have a high prevalence of some sleep disorders and mainly problems related to initiating sleep and sleep restlessness together with morning problems and daytime sleepiness, according to a new study."

Bush Vetoes Funding Bill for Combating Autism Act

From the Autism Society of America Web site:
"On November 13, President Bush vetoed the FY 2008 Labor, Health and Human Services and Education Appropriations bill. This bipartisan bill had strong support in both the House and the Senate, but the President objected to the overall funding levels of the bill, which includes modest increases for vital programs - most of which have experienced significant cuts, lost purchasing power or both over the past three years.
This legislation includes significant increases for autism programs at the Centers for Disease Control and Prevention (CDC), the Health Resources and Services Administration and the National Institutes of Health. These increases represent full funding of the Combating Autism Act, and are critical in improving our ability to diagnose, intervene and develop new therapies for autism. We need this crucial investment!
The House could move to override the President’s veto as early as this week. Contact your Member of Congress and urge them to vote YES on the veto override.
Click here to take action now."

NJ Theater Workshop for Adults with Autism

From Tina Kelley, reported in the New York Times, an article about a 12 week theater workshop at Montclair State University.
"B. Madeleine Goldfarb, the director of outreach and education at the Autism Center, helped get funding for the program. She said of the center’s clients: “Most of them have some sort of passion for something, and can be savantlike within that particular passion. How do you harness that?”
Ms. Goldfarb, who is pursuing more grants for the program, described its roots in discussions with some of the center’s clients.
“They were all sitting in their own little worlds, not communicating with one another around a big conference table, not making eye contact or engaging,” she said. She asked them what their passions were, and the atmosphere quickly became charged as a consensus grew around theater.
“There was a change in connectedness, in reciprocity, in giving suggestions, with other people in the room commenting on suggestions,” she said. “It was astounding.”
By welcoming adults, the workshop fills a crucial need. Suzanne Buchanan, the director of clinical services at the New Jersey Center for Outreach and Services for the Autism Community, described “almost a total lack of funding of appropriate programs” for adults with autism, many of whom do not work full time.
“Having a meaningful activity where they’re working productively with others, working toward a common goal, is a really great way for them to spend their time,” Dr. Buchanan said.

AAP Reports

The American Academy of Pediatrics just published two new reports related to ASDs. Although they are written for clinicians, they are sure to have useful information for families.

The first is called "Identification and Evaluation of Children with Autism Spectrum Disorders".
It describes signs and symptoms for pediatricians.
The second is "Management of Children with Autism Spectrum Disorders". According to the press release, this report "strongly advises intervention as soon as an ASD diagnosis is seriously considered rather than deferring until a definitive diagnosis is made. The child should be actively engaged in intensive intervention at least 25 hours per week, 12 months per year with a low student-to-teacher ratio allowing for sufficient one-on-one time. " The press release also says, "Pediatricians who treat children with ASDs should recognize that many of their patients will use nonstandard therapies. The report says it’s important for pediatricians to become knowledgeable about complementary and alternative medicine (CAM) therapies, ask families about current and past CAM use, and provide balanced information and advice about treatment options, including identifying risks or potential harmful effects. They should avoid becoming defensive or dismissing CAM in ways that convey a lack of sensitivity or concern, but they should also help families to understand how to evaluate scientific evidence and recognize unsubstantiated treatments. "

Disclosure

This article by Debi Boucher Stetson in a New England newspaper, touches on a sticky subject: what and whom to tell about your child's special needs.

Facilitated Communication

This blog post from Dr. Sanjay Gupta at CNN triggers some interesting comments on Facilitated Communication.

Clinton Asked About Autism

Just a blurb that came my way. Posted by Mark Murray on an MSNBC News blog called "First Read":
"[Hillary} Clinton answered questions from voters at a town hall at the opera house here, which was her second stop on a two-day swing through the state...Other audience members asked...what she would do to address disorders like Asperger's syndrome, which is part of the autism spectrum of disorders. Clinton responded ...that she wanted to be the president to put autism on the map and help families dealing with it. ."

Thimerosal Study

Here is a link via Robert Bazell in The Daily Nightly that leads to the full-text article in The New England Journal of Medicine "Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years". I don't know how long it will be available for free online.

NJ Father Wins Lawsuit for Son's Care

I heard the teaser for this story by Larry Abramson on NPR, but missed the broadcast. It is now available live online.
"What they said when they rejected me was that treatment was not restorative. It didn't restore a previously existing function," Micheletti says. "Jake was three and a half. He had never spoken before. [The insurance company thought], 'Why should we give him verbal behavior therapy to make him speak now.'"