Wednesday, February 28, 2007

"It's not the label that's the problem...'s the baggage associated with it." Quick, somebody engrave that somewhere!
This is a very interesting article about our tendency to want to give everything a name, and what mindset it might produce.
"...parents and children may be relieved to learn that there's a name for the problem and specific remedies. But, she says, "it's incumbent on parents to explain that 'Well, you may be wired a little differently; this might make it more difficult for you; you might have to work harder and use different strategies,' as opposed to 'This means you can't learn.' "
Recent research in neuroscience bolsters the idea that people can and do change. Says Perry: "The brain is like a muscle: The areas that are used grow and improve while those which aren't, don't." Such growth is often visible on brain scans. Parents should also be aware that the criteria used to define these conditions are not absolute and that they shift over time. The conditions themselves also change as children learn and grow, often worsening with stress and improving when the child feels calm and safe."

Sunday, February 25, 2007

Blog Series on Sensory Processing Disorder

This series of first person articles appeared on Wired Magazine's website, in the Blogs section. Part 1 is at the bottom of the page. The writes calles Sensory Processing Disorder the "human equivalent of a computer that can't adequately multitask, or a network that drops packets when there is a lot of traffic. All of [her son Caleb's] senses work individually, but his brain loses information when they are combined. This problem wasn't obvious to us when he was younger, but now that he is in first grade, the complications are growing."
She continues:
"I've become solidly convinced that my son Caleb doesn't need a coping strategy, he needs his brain to be recalibrated. With the help of some professionals and some surreal neurotechnology, I'm going to try doing just that. We're going to try to hack my child's brain.
Today our family will travel to a clinic in Boulder, Colorado to do initial tests with Caleb. The treatment itself begins in earnest next Friday, which is when the neurotech comes into play. In this multiple-part series, I'll take you with us on the journey. I don't know what the outcome will be, but we can watch it unfold together."
At the end of Part 4, this is where she is at:
"Caleb is now over half-way through the program at the Center, going once in the morning and then again in the afternoon. We make careful observations of his behavior, taking notes and watching how he relates to the world around him. It is too early to tell what kind of effect the treatment is having, but our hopes are high."
To be continued...

Wednesday, February 21, 2007

Book Review: Rules by Cynthia Lord

This is a children's book, for ages 10 and up. It's a good read for siblings of autistic children.
Rules by Cynthia Lord
Catherine is 12 years old and in between. She is stuck between her brother David and her parents, and David and the outside world. Nothing goes as she wishes it would. Why does her best friend have to spend the summer in California? Why do all her hopes for friendship with Kristi, who just moved in next door, get twisted out of shape? Why can't she be honest about her new friend Jason? Above all, why can't everyone have the same chances in life?
I liked this book because Catherine is so real. She's human, she has faults, and she makes mistakes. She cares about what she wears and being popular. But she also has a big heart. So I was rooting for her all the way, even when she did things I didn't agree with.

Book Review: George and Sam

I always meant to do book reviews on this blog, but it's been difficult. I read a lot of very different things for my job, as a librarian, and just because. But here's one I finished recently"

"George and Sam: Two Boys, One Family and Autism" by Charlotte Moore.
Moore is a British writer and friend of Nick Hornby, who raved about this book in "The Polysyllabic Spree". It wasn't available in the US until recently. Moore has taken up the task of describing the experience of living with two children with autism as clearly and accurately as she can. This is a rather unsentimental view of "autists", as she calls them. But at the same time, it is clearly evident that she fiercely loves all of her children and would not change them if she could. When describing her perpetual state of sleep deprivation, Moore says, "Acceptance is key - for me, anyway. Once I'd let myself stop fighting the boys' sleep habits, everything improved. One should set oneself realistic targets." This sums up Moore's approach to rearing her autistic boys. She walks the fine line between acceptance, which could easily veer over into passivity, and active education/rehabilitation, which also, taken too far, can become obsession. I think she does an admirable job. I don't agree with everything she says (she is adamantly against mainstreaming even high functioning autisitic children in school), but she does try many treatments, with different degrees of results. Above all, Moore's humanity shines through. Her book is heartbreaking and sardonic at the same time. She doesn't ever feel sorry for herself. As a writer, she ruminates eloquently on what autism "means" to us "normal" people. Moore says, "...autism challenges our assumptions about what it means to be human...they can be instruments for us to learn benevolence upon; unwittingly, they provide a yardstick for neurotypical moral behavior."

Inability to Metabolize Fats May Be Key to Autism

This article in the Newark Star-Ledger describes research by NJ scientists on how the body breaks down fatty acids, and its connection to autism. Some excerpts:
"Researchers say that in the future a person's risk for autism could be measured with a simple urine test that would look for high levels of "bad" fat molecules, or a blood test that could reveal genetic problems, including the absence of a key gene, called GSTM1, which is responsible for metabolizing good fats. Many people with autism do not have this gene.
Xue Ming, a neuroscientist and a founding director of the Autism Center at UMNDJ-Newark, discovered that children with autism have higher levels of bad fat molecules in their urine than typical children.
No one understands yet why it is that so many children with autism have such metabolic differences, but Ming suggested it might be caused by an interaction between genes and the environment. It may be that having less of these key fats reduces the body's ability to deal with environmental and metabolic stress. "

""Metabolic issues in autism are entirely understudied," said Sophia Colamarino, science director for Cure Autism Now, a major advocacy and research group in Los Angeles. "It's a very exciting area. There is accumulating evidence that would clearly tell me this is where I should look."
The New Jersey scientists are cautious, however, about their preliminary results, and warn families not to expect a miracle cure. Testing on humans, they say, could take a few years.
Meanwhile, the researchers are preparing a preliminary study to begin in September. Lambert hopes to work with 5- to 7-year-olds at the Douglass Developmental Disabilities Center in New Brunswick, a school for children with autism run by Rutgers.
Lambert will be giving the children doses of a good fatty acids to see if they have any noticeable effect on the children's cognitive, social and behavioral states. The study will use a control group of similar students.
"New Jersey is the perfect place to do this," said Lambert, director of the EPA-funded Center for Neurotoxicology. "We have a high incidence (of autism), a long history of activism and a strong community." "

Tuesday, February 13, 2007

Article on NLD

Coverage of Nonverbal Learning Disorder is generally sporadic, probably because it is not yet listed in the DSM Diagnostoc Statistical Manaual). Here's a decent article, with a rather unfortunate headline.
"Coworkers do not understand why people who are smart and educated have problems with tasks such as managing a classroom or assisting customers. Teachers and parents often cry out in frustration, "If you're so smart, why can't you..." or "I shouldn't have to tell you!" But you do have to tell them, because people with nonverbal learning disability often don't learn by observation, and have trouble learning and doing the simple, everyday things most people take for granted. "

"Day to Day" on NPR

Today's edition of "Day to Day" on NPR is supposed to do a feature on renewed attention on Asperger's Syndrome in the wake of the murder in the Boston area. Find your local station here.

Saturday, February 10, 2007

1 in 150

New numbers are coming out of the Centers for Disease Control.

"Prevalence of Autism Spectrum Disorders --- Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2000."Catherine Rice et al. (CDC).MMWR CDC Surveillance Summaries, February 9, 2007, Vol. 56, No. SS-1

"Prevalence of Autism Spectrum Disorders --- Autism and Developmental Disabilities Monitoring Network, 14 Sites, 2002."Catherine Rice et al. (CDC).MMWR CDC Surveillance Summaries, February 9, 2007, Vol. 56, No. SS-1

Wednesday, February 07, 2007

Treating Autism Through Diet

Nice article on gluten free and casein free diet here. It's good to see some research being done on this. Some excerpts:
"Why the diet seems to work isn't completely understood. One theory involves the "leaky gut syndrome," in which the autistic child's body isn't able to process proteins found in wheat and dairy products, said Gary Stobbe, medical director of Seattle's Autism Spectrum Treatment and Research Center, a non-profit organization that diagnoses, treats and manages people with autism. The undigested chunks of protein get into the blood stream and affect the brain. Another theory is the body's immune system is reacting to the proteins in the body."Nothing is determined for certain and there is no set approach with the diet," he said. "In my practice, it is something we encourage in younger kids or if we see a kid not making progress with more conventional therapies. "Stobbe said for some children, especially the more severe autism cases and those with physical complaints, the diet works well. They are calmer, have better attention spans and have less severe behavioral disturbances.Still no one knows whether this will work in the long term.
So far, only anecdotal evidence from parents is available.One study under way at the University of Rochester Medical Center in New York looks at the effects of the diet in autistic children between the ages of 2 1/2 and 4 1/2. Sponsored by the National Institute of Mental Health, it began in 2004 and should be completed in 2008.

Thursday, February 01, 2007

Media Coverage vs Scientific Research

Sifting through the pages of newspapers, most people reading stories about autism would think scientists are primarily grappling with understanding how environmental factors, such as childhood vaccines, might contribute to the condition.
But the truth is quite different. The efforts of the scientific community to explore autism lie predominantly in brain and behavior research.
This disconnect between the scientific community and the popular media is starkly laid out in a study published in the February issue of Nature Reviews Neuroscience by researchers at the Stanford University School of Medicine.
The researchers found that while 41 percent of research funding and published scientific papers on autism dealt with brain and behavior research, only 11 percent of newspaper stories in the United States, United Kingdom and Canada dealt with those issues. Instead, 48 percent of the media coverage dealt with environmental causes of autism, particularly the childhood MMR vaccine for measles, mumps and rubella that was once linked with autism in a widely refuted study. Only 13 percent of published research was about environmental triggers of autism.
“What was very interesting is that media frequently reported being very skeptical of the MMR evidence, as was scientific literature,” said Judy Illes, PhD, associate professor of pediatrics and senior author of the paper. The media stories accurately reflected scientific thinking, but didn’t reflect the breadth of scientific research including the genetics, treatment and epidemiology of autism.

The Stanford team divided autism research into six categories: brain and behavior, genetic, environment, treatment, epidemiology and other. Singh then categorized research spending, published research papers and stories about autism in the media. What she found was a sharp disconnect between the conversation scientists were having via published papers, and what the public learned about autism through the media.

Interesting read! Full article here.

Article on Women with Asperger's

From Psychology Today:
"Girls are pretty neglected," says Shana Nichols, who specializes in treating girls with AS. Most of what we know about the condition is based on research on boys; theories about how it manifests itself differently in girls stem mainly from anecdotal evidence. Researchers agree that girls with AS tend to be more anxious and less aggressive than the boys. And during their teenage years, they are at an increased risk for awkward sexual situations and even date rape because of their inability to interpret social cues and their tendency to take statements literally. "