Friday, October 16, 2009

Sean's Walk Now for Autism 2009 Donation Page


Sean at the 2008 Walk

Saturday, October 24, my family and I will be participating in a very
special event, WALK NOW For Autism benefiting the Autism Speaks
Foundation. WALK NOW FOR AUTISM unites the community in support of those
affected by autism with a noncompetitive 5K walk and community resource
fair, where parents meet a variety of autism service providers and kids
enjoy arts & crafts, moon bounces and other fun activities. Experience the
power of thousands united by a single cause by joining WALK NOW FOR AUTISM:
the fast-growing, family-friendly community dedicated to raising necessary
funds for autism research, awareness and outreach.

You may be wondering why Autism Speaks and WALK NOW are so important to me
and my family. My involvement stems from a very personal and deep emotional
contact with this complicated disease.

My 10-year-old son, Sean, was diagnosed with a form of Autism, Asperger's
Syndrome, seven years ago. I am very proud of Sean and impressed with his
progress so far thanks to hard work on his part, our part and an excellent
program within the Cy-Fair School District.

I strongly feel that I can have a direct impact on finding causes and cures
for autism. I also feel strongly that Autism Speaks/Cure Autism Now is a
wonderful organization which has been instrumental in furthering autism
research. In 1995, when Cure Autism Now was founded there were only 12
researches focused solely on autism. Today there are over 300. That is
progress. WALK NOW gives us a tangible way to help the nearly 1.5 million
other Americans affected by autism and related disorders.

I am asking for your support in helping us raise money for this worthy
cause. Any contribution you are able to make would be greatly appreciated,
but I ask you to give big as there is a big need for further research. My
personal goal is to raise $500.00 for Cure Autism Now and I hope to far
exceed that goal. Last year I raised over $1,125.00!

I know times are tough and some of my biggest contributors are no longer
my co-workers due to layoffs, etc. Please give what ever you feel comfortable with.

It is easiest to donate online by going to our personal webpage at

Sean's 2009 Autism Speaks Walk Now page

If you are unable to donate online, you can print out a donation form from
that page and hand it to me. All checks should be made payable to Autism

Please feel free to forward this e-mail on.

Marc's Autism - Asperger's Syndrome Blog


Every 20 minutes another child is diagnosed with autism. A cure must be
found NOW. Autism is a neuro-developmental disorder that is commonly
diagnosed by the age of three, and in some cases, as early as one year.
Affecting one in every 91 children born today, autism is characterized by
varying degrees of impairment in communication skills, social interactions,
and restricted, repetitive and stereotypical patterns of behavior. The
money raised at WALK NOW FOR AUTISM supports Autism Speaks' mission to find
the causes, effective treatments and a cure for autism through funding
essential biomedical and scientific research.

About Autism Speaks and Cure Autism Now
Autism Speaks is dedicated to increasing awareness of the growing autism
epidemic and to raising money to fund scientists who are searching for a
cure. Cure Autism Now was founded in 1995 by Jonathan Shestack and Portia
Iversen, parents of a child with autism. Autism Speaks was founded in
February 2005 by Suzanne and Bob Wright, grandparents of a child with
autism. Autism Speaks and Cure Autism Now (CAN) recently announced plans to
combine operations, bringing together the two leading organizations
dedicated to accelerating and funding biomedical research into the causes,
prevention, treatments and cure for autism; to increasing awareness of the
nation's fastest-growing developmental disorder; and to advocating for the
needs of affected families. Together the organizations have awarded autism
research grants valued at more than $50 million. To learn more about Autism
Speaks, please visit

About Autism
Autism is a complex neurobiological disorder of development that lasts
throughout a person's lifetime. Because persons with autism exhibit
different symptoms or behaviors, ranging from mild to serious, autism is a
"spectrum" disorder, or a group of disorders with a range of similar

Children with autism have difficulty communicating and interacting with
others. Many individuals with autism seem to retreat into isolation, or
fixate on a word, an object, or an activity.

Sometimes symptoms are seen in infancy, while other children develop
normally for a year or more before they begin to slip into their own
private world. At best, a high functioning person with autism may simply
seem eccentric, a loner. At worst, a person with more profound autism may
never learn to speak or care for themselves.

You are never prepared for a child with autism. You will gradually come to
believe it, but never fully accept it, get used to it, or get over it. You
put away the hopes and dreams you had for that child - the high school
graduation, the June wedding. Small victories are cause for celebration - a
word mastered, a dry bed, a hug given freely.


I look forward to hearing from you. I thank you very much!


Monday, October 05, 2009

Op-Ed: Fight to overcome autism gets major boost, higher priority

By Health and Human Services Secretary Kathleen Sebelius

Washington, DC — Last Wednesday, President Obama visited the National Institutes of Health (NIH) to announce the single biggest investment in biomedical research in American history. Among the $5 billion in grants he announced are new explorations of longtime research targets from cancer to heart disease. But the grants also include the largest-ever investment in an Obama administration priority that has so far gone mostly unnoticed: autism research.

President Obama has made autism a focus from the first days of his presidency. Less than a week after he was sworn in, my department’s Interagency Autism Coordinating Committee released its first-ever strategic plan for government autism research. And President Obama has backed this plan by adding $1 billion to his budget for autism over the next eight years. Altogether, the federal government will provide nearly twice as much funding for autism research in the upcoming fiscal year as we had just three years ago.

We needed a new focus and new resources because autism has emerged as an urgent public health challenge. As recently as the 1990s, scientists thought autism was a rare disorder that affected 1 in every 2000 kids. Earlier this decade, we revised that estimate to say that 1 in every 150 kids was somewhere on the autism spectrum. Our most recent data suggest that autism may be even more common than that. Almost every American I talk to about this issue knows at least one family that is affected by autism.

Autism has created new challenges for families, schools, and health care providers. When parents discover that their child has autism today, they’re left with a lot of questions, but few answers. What causes autism? How can it be prevented? Which treatments can help? Where can I get needed services? These questions aren’t new. And the government has tried to address them in the past, most notably with the Combating Autism Act, which passed in 2006. But there has never been a comprehensive, well-funded effort across government to overcome autism – until now.

As Secretary of Health and Human Services, I oversee many of the agencies that are participating in this effort. At the NIH, new research funds are being used to address every aspect of autism from testing innovative treatments to exploring the unique needs of the growing number of adults with autism to searching for the genes underlying the disorder.

At the Health Resources and Services Administration, they’re helping train health professionals to recognize autism early when we know treatments can be more effective. They’ve also created two national autism research networks that will allow researchers to gather data from different sites in order to identify the most promising treatments for autism. These networks will also create channels for these best practices to flow back to parents and providers around the country, so that Americans can have the latest evidence on which treatments work and which don’t.

The Center for Medicare & Medicaid Services is working with states to provide targeted case management that helps kids with autism get the support they need at home and at school. And for the first time ever, they’re supporting medical home models that can help children with autism get the kind of coordinated, family-centered care that helps them thrive.

President Obama is also taking steps to make sure health insurance reform will address the needs of families with autism. Under the plan he has proposed, private insurance companies would no longer be able to deny you coverage just because you or someone in your family has a condition like autism. And in order to participate in new health insurance exchanges, insurance companies will have to agree to offer mental health services that help families with autism on par with other benefits.

Like public health challenges such as polio in the 1950s and HIV/AIDS in the 1980s, we must address the rising prevalence and complex needs of people with autism. We still have more questions than answers. But with additional funding and a new coordinated national strategy, we are working harder and more closely together to find those answers than ever before.

Kathleen Sebelius is the Secretary of Health and Human Services in President Barack Obama's Cabinet. She was the Democratic governor of the state of Kansas from 2003 to 2009.

For the First Time, a Census of Autistic Adults

Among the many great mysteries of autism is this: Where are all the adults with the disorder? In California, for instance, about 80% of people identified as having an autism spectrum disorder (ASD) are 18 or under. Studies by the Centers for Disease Control and Protection (CDC) indicate that about 1 in 150 children in the U.S. have autism, but despite the fact that autism is by definition a lifelong condition, the agency doesn't have any numbers for adults. Neither has anyone else. Until now.

On Sept. 22, England's National Health Service (NHS) released the first study of autism in the general adult population. The findings confirm the intuitive assumption: that ASD is just as common in adults as it is in children. Researchers at the University of Leicester, working with the NHS Information Center found that roughly 1 in 100 adults are on the spectrum - the same rate found for children in England, Japan, Canada and, for that matter, New Jersey.

This finding would also appear to contradict the commonplace idea that autism rates have exploded in the two decades. Researchers found no significant differences in autism prevalence among people they surveyed in their 20s, 30s, 40s, right up through their 70s. "This suggests that the factors that lead to developing autism appear to be constant," said Dr. Terry Brugha, professor of psychiatry at the University of Leicester and lead author of the study. "I think what our survey suggests doesn't go with the idea that the prevalence is rising."

In England, where there is widespread suspicion that the childhood vaccine for measles, mumps and rubella has led to an explosion in autism cases, the study was hailed as part of a growing body of evidence that the vaccine, which was introduced in the 1988, is not to blame.

Brugha's study was part of a larger national survey of psychiatric disorders among adults. In the first phase, researchers conducted 90-minute interviews with 7,461 people in 4,000 randomly selected British households; the interview included a 20-item questionnaire designed to screen for autism. (Sample yes-or-no questionnaire items: I find it easy to make friends. I would rather go to a party than the library. I particularly enjoy reading fiction.) Based on their answers in the first phase, investigators further assessed 618 individuals, using a battery of psychiatric measures, including a state-of-the art autism diagnostic tool. (About 200 of these participants had been selected for scoring high on the autism screen; the rest had been selected to sample for other disorders.) In the second phase, researchers identified 19 adults with ASD. But had they been able to evaluate all 7,461 in the survey, they estimate that they would have found 72 cases, or roughly 1% of the total.

One limitation of the study is its relatively small size, says Brugha. Being the first of its kind, it also needs to be confirmed by other studies. Another issue, notes Richard Roy Grinker, an autism researcher and professor of anthropology at George Washington University, who was not involved in the work, is that the study looked only at adults in the general population. Had it included people living in institutions, which is where the most severely autistic adults are likely to be, the estimated rate of ASD may have been even higher than 1%.

Michael Rosanoff, an epidemiology specialist with Autism Speaks, emphasizes that "the small sample size for estimating prevalence requires caution about interpreting this finding on a population-based scale."

Despite its limits, the new study does begin to fill in the profile of high-functioning adults who are on the spectrum but living in an ordinary home in the community. Researchers found that they are primarily male and unmarried: about 1.8% of men surveyed were on the spectrum - among never-married, single men, an estimated 4.5% had ASD - compared with just 0.2% of women. (Brugha notes, however, that autism screening tools may be poorly adapted for identifying autism in adult females.) People with autism are less likely than average to have finished college but about as likely to be employed. Only 0.2% of adults who had finished college were on the spectrum, but the rate was 10 times higher among those without a high school degree. And, in contrast with people with depression or anxiety disorders, autistic adults were unlikely be receiving any sort of mental health services.

Why has it taken so long to do a study of this sort? For one thing, you need an enormous sample size - at an enormous cost - to find significant numbers of people with autism. Second, it's more difficult to detect autism in adults than in children. Children often have glaring symptoms, like delays in learning to speak, extreme social withdrawal and terrible tantrums. Less is known about how autism looks in adults. "To diagnose autism, you need to have good information on people's behavior," says Brugha. "It's much more straightforward to get that with children because you've got parents and teachers as observers. Adults with autism are not the best people to describe their own behavior."

The Irish-born psychiatrist and epidemiologist says he sees a lot of adults with ASD in his own clinical practice, and "they have so much difficulty saying what their own difficulties are." He suspects that this lack of insight and inability to communicate emotional issues also reduces their ability to seek professional help.

Efforts to identify and help adults with ASD have lagged far behind efforts to help children. And yet, Brugha notes that just having an ASD diagnosis to explain their troubles can be enormously beneficial to his adult patients, who often struggle with relationships at home and at work because of difficulty reading social cues. "Once you help them to understand that they are not the only person on the planet who is like this, and help their families understand, it can be a breakthrough. People also have a better chance of staying in their work, if their employer understands why they are the way they are." Moreover, Brugha says it is not expensive to provide services to adults with relatively mild autism. "The cost of treating a child with autism is phenomenally high. We are not talking about this. We are talking about support, helping people adapt their lives" with help from a social worker.

Grinker, who has a teenage daughter with autism, finds the study to be in some ways comforting. "I would think that a study like this would encourage people that children with autism could grow up and have futures that are meaningful and that they are not going to end up in institutions."

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