Action Alert: Health Resources Commission Subcommitte on ASD June 2008 Draft Report
"HB 2918, Oregon's Health Insurance Mandate for Pervasive Developmental Disorders, instructed the Health Resources Commission (HRC) to conduct a review of available medical and behavioral health evidence on the treatment of pervasive developmental disorders. The HRC Subcommittee on Autism Spectrum Disorders has completed their draft report and is seeking public input. Their final report on "Effectiveness of Treatments for ASD" will be completed by September 2008 and will be presented to the legislature in January 2009.   Contrary to what all other states have found, Oregon has found insufficient evidence to determine the effectiveness of ANY treatment for autism except for two:  Secretin and DTT for language acquisition - which they found NOT to be effective! In other words, they found insufficient evidence for therapies like ABA, RDI, gluten-free/casein-free diets, Son-Rise, TEACCH, auditory integration, PECS, social skill groups, and music therapy. " ...  Read more.

Genes from Middle East families yield autism clues
Harvard researchers have discovered half a dozen new genes involved in autism that suggest the disorder strikes in a brain that can't properly form new connections. The findings also may help explain why intense education programs do help some autistic children - because certain genes that respond to experience weren't missing, they were just stuck in the "off" position. "The circuits are there but you have to give it an extra push," said Dr. Gary Goldstein of the Kennedy Krieger Institute in Baltimore, which wasn't involved in the gene hunt but is well-known for its autism behavioral therapy. The genetics suggest that "what we're doing makes sense when we work with these little kids - and work and work and work - and suddenly get through," he said. But the study's bigger message is that autism is too strikingly individual to envision an easy gene test for it. Instead, patients are turning out to have a wide variety, almost a custom set, of gene defects. "Almost every kid with autism has their own particular cause of it," said Dr. Christopher Walsh, chief of genetics at Children's Hospital Boston, who led the research published in Friday's edition of the journal Science. Autism spectrum disorders include a range of poorly understood brain conditions, from the mild Asperger's syndrome to more severe autism characterized by poor social interaction, impaired communication and repetitious behaviors. It's clear that genes play a big role in autism, from studies of twins and families with multiple affected children. But so far, the genetic cause is known for only about 15 percent of autism cases, Walsh said. So Walsh's team took a new tack. They turned to the Middle East, a part of the world with large families and a tendency for cousins to marry, characteristics that increase the odds of finding rare genes. They recruited 88 families with cousin marriages and a high incidence of autism, from Jordan, Saudi Arabia, Kuwait, Oman, Pakistan, Qatar, Turkey and the United Arab Emirates. They compared the DNA of family members to search for what are called recessive mutations - where mom and dad can be healthy carriers of a gene defect but a child who inherits that defect from both parents gets sick. In some of the families, they found large chunks of missing DNA regions that followed that recessive rule. The missing regions varied among families, but they affected at least six genes that play a role in autism. Here's why this matters: All the genes seem to be part of a network involved in a basic foundation of learning - how neurons respond to new experiences by forming connections between each other, called synapses.

Calm Down or Else
By BENEDICT CAREY NY Times
The children return from school confused, scared and sometimes with bruises on their wrists, arms or face. Many won’t talk about what happened, or simply can’t, because they are unable to communicate easily, if at all. “What Tim eventually said,” said John Miller, a podiatrist in Allegany, N.Y., about his son, then 12, “was that he didn’t want to go to school because he thought the school was trying to kill him.” Dr. Miller learned that Tim, who has Asperger’s syndrome, was being unusually confrontational in class, and that more than once teachers had held him down on the floor to “calm him down,” according to logs teachers kept to track his behavior; on at least one occasion, adults held Tim prone for 20 minutes until he stopped struggling. The Millers are suing the district, in part for costs of therapy for their son as a result of the restraints. The district did not dispute the logs but denied that teachers behaved improperly. For more than a decade, parents of children with developmental and psychiatric problems have pushed to gain more access to mainstream schools and classrooms for their sons and daughters. One unfortunate result, some experts say, is schools’ increasing use of precisely the sort of practices families hoped to avoid by steering clear of institutionalized settings: takedowns, isolation rooms, restraining chairs with straps, and worse.

LISTENING TO YOURSELF
By Dan Coulter
Who do you listen to? We generally listen to people we respect. Which makes it kind of ironic that we don't always listen to ourselves. A few days ago, my wife pointed out an article about listening written last year by teacher Andy Dousis, who noticed his fourth grade students excluding a classmate from their activities.  This classmate had trouble making conversation, so he sometimes pushed or grabbed others.  He had other challenges, too, and often sobbed in frustration. While the other students were initially patient with this child, they became less and less tolerant as the year progressed. In looking at his own behavior, this teacher realized that the good example he'd set at the beginning of the school year had slipped away from him.  In September, he had put considerable effort into integrating this "difficult" classmate into the class, and his students had responded.  But as the year wore on and he'd gotten busier, he'd become impatient and spoken sharply to correct the child's inappropriate behaviors.  The students were simply picking up their cues from their teacher.  A good person and a good teacher, all it took to start fixing his approach was to listen to himself and realize what he was doing.  Things got better for the lonely student and everyone in the class benefited.

It's not just boys who are autistic
When it was first discovered more than 60 years ago, Asperger's syndrome was thought to be a male-only condition. But now that more and more girls are being diagnosed with it, why do we hear so little about them, wonders Joanna Moorhead.  Ten years ago, when she was 11, Robyn Steward was diagnosed with Asperger's syndrome, a form of autism that made that already challenging time particularly difficult. While other girls were forming tight friendships, hanging out with each other for hours after school, Steward had trouble fitting in with her contemporaries - more so, she suspects, than if she had been a teenage boy with the syndrome. "At that age," she says, "boys aren't connecting with one another so much, but for girls it's so cliquey. Also, the stuff I was interested in seemed even more weird in a girl than a boy. It was mostly computers and music with me - boys can get away with being a bit obsessive, but it seems more strange in a girl."

Asperger's: My life as an Earthbound alien
One CNN manager, who asked to remain anonymous, recently learned -- at 48 -- that she has Asperger's syndrome, a form of autism. Today she shares an inside view of life with the condition.
Recently, at 48 years of age, I was diagnosed with Asperger's syndrome. For most of my life, I knew that I was "other," not quite like everyone else. I searched for years for answers and found none, until an assignment at work required me to research autism. During that research, I found in the lives of other people with Asperger's threads of similarity that led to the diagnosis. Although having the diagnosis has been cathartic, it does not change the "otherness." It only confirms it.

Asperger's and IT: Dark secret or open secret?
Asperger's Syndrome has been a part of IT for as long as there's been IT. So why aren't we doing better by the Aspies among us?

ASPERGER'S AND THE HIGH TECH INDUSTRY
The high tech world needs people who can become so engrossed in solving a complex computer problem that the rest of the world virtually melts away. It sounds like the perfect setting for people with Asperger's Syndrome. Asperger's is on the high functioning end of autism and affects peoples' ability to pick up on non-verbal cues or interact in social situations. Computerworld Magazine recently featured an article examining why the IT industry could be an ideal setting for people with Asperger's, and how employers can help make life easier for employees with the syndrome. Our guests are Computerworld Magazine contributing editor, Tracy Mayor, and Phil Schwarz, vice president of the Asperger's Association of New England.