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US Autism & Asperger Association, Inc. December 4, 2008

Welcome to USAAA Weekly News, an email newsletter that addresses a range of topics on Autism Spectrum Disorders and Asperger's Syndrome.


Autism linked to vaccines?


from CNN's Anderson Cooper Blog

David Kirby
AgeofAutism.com

It looks like the CDC may have missed a memo to itself on vaccine safety.

One very contentious issue in the vaccine-autism debate has been whether a certain subset of genetically susceptible children is unequipped to handle the early and intensive US immunization schedule – including kids like Hannah Poling, who developed autism after receiving nine vaccines at once.

No two people are alike so why do doctors think that giving everyone the exact same amount of vaccines is a good thing? They wouldn’t give a baby the same amount of medicine as a 4 or 5 yr old so why do they think that they can do that with vaccines and have no consequences!? —Cindy...GA

The theory is that some people with abnormal immune or metabolic systems might become overtaxed by the fever, inflammation and/or other stresses sometimes caused by multiple vaccines.

Many doctors and scientists scoff at the notion that someone could be injured by getting too many shots at once. They say that people of all ages, including babies, can handle multiple exposures at any given moment.

Click here to read more.


 

Autism's terrible toll: Parents risk hitting "a breaking point"
By Nancy Lofholm
Denver Post Staff Writer

Jacob Grabe, 13, could sense a storm coming several days out. He would get agitated and make strange noises. Silverware bothered him. He could eat only from plastic forks and spoons. He breezed through complicated algebra but struggled with basic division.

Nearly three months ago, when his father, Allen, allegedly shot and killed him while he was sleeping, Jacob had been exhibiting these and many other symptoms of the mysterious disorder autism for most of his short life.

"Money is a huge issue in 90 percent of our families," said Penny Park, program director with the state autism society.

He had great difficulty making friends. He had trouble controlling outbursts. He had been shuffled from school to school. He had, in recent years, made some improvements with medications. But there is no cure for autism.

Friends of the family say Jacob's father feared his son would never be able to live a normal life.

So Jacob became another statistic in a sad, pressure-cooker reality for families with autistic children.

Click here to read more.


 

Autism's Financial Burden

By Theresa Wrangham
Mothering Natural Family Living

Twelve years ago, tears stained my face as my husband and I were told that our eldest daughter, Rachel, had autistic tendencies that would require further diagnostic investigation. Six months later, Rachel was diagnosed on the autism spectrum as PDD/NOS, or in layperson's terms, mildly autistic. Even so, she would face significant challenges in everyday life requiring treatment to mediate the long-term effects of this disorder. Early medical advice about treatment focused on core features of autism's deficits in language delay, social skills, relationship development delays, and reasoning capacity. Years later, we would discover the value and cost of the biomedical treatments that have jump started her more recent improvements.

The story for many families facing this all too common financial scenario is anything but rosy, with many unable to meet the financial obligations that autism treatment entails.

When Rachel was diagnosed, I was a stay-at-home mom and my husband Scott had a good job with good health insurance coverage, or so we thought. It quickly became apparent that insurance would not cover the recognized treatments that Rachel needed to improve and certainly not off-label biomedical treatments we have used with success. We were a middle-class family with assets; we were told that we didn't qualify for services to assist us in meeting the financial burdens of treatment. If we could not find a means to fund treatment and education now and in the future for Rachel, our family faced a financial downhill slide to disaster. Autism was now the predator stalking our family and threatening Rachel's potential, our hopes for retirement, and college opportunities for both our children.

...studies published by Harvard University found societal costs for caring and treating individuals with Autism Spectrum Disorder (ASD) in the US to be $35+ billion per year.


Click here to read more.


 

Study shows families' financial strain from autism

By Lindsey Tanner, AP Medical Writer

CHICAGO – More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show.

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids. She is divorced — another common casualty, she said, of the challenges of caring for autistic kids.

"This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan, a researcher with the government's Maternal and Child Health Bureau.

The results are from a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness, requiring more extensive than usual medical care.

A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study authors said.

Click here to read more.


 

10 Tips for Good Advocates

by Pat Howey, Advocate

Remember, your goal is to assist parents in achieving an appropriate education for their child.

1. Good advocates facilitate the IEP process. Advocates must set an example for the entire IEP Team. They must be a role model of behavior for the parent. Challenging school experts, demeaning school staff, or being inconsiderate or impolite, will not advance the child’s cause. Your goal is to get better school services for the child. Good advocates ask questions and make valuable suggestions to advocate for a child. It is okay to disagree. It is not okay to put down or verbally attack someone.

Click here to read all 10 tips.


 

GoodSearch: You Search...We Give!Shop Online and Support USAAA

What if USAAA earned a penny every time you searched the Internet? Or how about if a percentage of every purchase you made online went to support our USAAA? Well, now it can!

GoodSearch.com is a new Yahoo-powered search engine that donates half its advertising revenue, about a penny per search, to the charities its users designate. Use it just as you would any search engine, get quality search results from Yahoo, and watch the donations add up!

GoodShop.com is a new online shopping mall which donates up to 37 percent of each purchase to USAAA! Hundreds of great stores including Amazon, Target, Gap, Best Buy, ebay, Macy's and Barnes & Noble have teamed up with GoodShop and every time you place an order, you’ll be supporting USAAA.

Just go to www.goodsearch.com and be sure to enter US Autism and Asperger Association as the charity you want to support. And, be sure to spread the word!




GET YOUR DVDs from the
2008 USAAA International Conference
Click here to get all your conference DVDs including Holly Robinson Peete's Keynote Address
In This Issue:
Autism linked to vaccines?

Autism's terrible toll: Parents risk hitting "a breaking point"

Autism's Financial Burden

Study shows families' financial strain from autism

10 Tips for Good Advocates

Shop Online and Support USAAA

 

Click here for Conference DVDs


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