Unlock Autism

You know, I had heard it was a disgruntled ex employee of a Pharmaceutical company that started this whole MMR connection, if that is true this person should be tarred an feathered and tied to a whipping post in the village square for wasting so many valuable years of research down a wrong street, years that could have been used to find a cause and cure. Instead, we have wasted big time dollars and time accusing and defending.. What a shame, Now this article appeared int he NY Times claiming that the researchers had a conflict of interest who published the findings.. all this for what, a Gov’t grant or a mention in some Journal?

“Meanwhile, the original paper’s publisher — The Lancet — complained in 2004 that the lead author had concealed a conflict of interest. Ten of his co-authors retracted the paper’s implication that the vaccine might be linked to autism. Three of the authors are now defending themselves before a fitness-to-practice panel in London on charges related to their autism research.

Sadly, even after all of this, many parents of autistic children still blame the vaccine. The big losers in this debate are the children who are not being vaccinated because of parental fears and are at risk of contracting serious — sometimes fatal — diseases.”

How about we shift towards researching things introduced into the environment that mirror the rise of Autism, Such as; Cell Phones, PC’s, Plastic Everything, Teflon, Hormone use in the food supply, even down to Hydro-Ponic Marijuana. Doesnt anyone else wonder about these things and their possible place in the cause of the Autism Epidemic? Anyone there?

Ten years ago, a clinical research paper triggered widespread and persistent fears that a combined vaccine that prevents measles, mumps and rubella — the so-called MMR vaccine — causes autism in young children. That theory has been soundly refuted by a variety of other research over the years, and now a new study that tried to replicate the original study has provided further evidence that it was a false alarm. Read More from this New York Times article

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Where as I appreciate any and most attention Autism receives, I feel a bit sickened by the fact that celebrity’;s seem to be leanding their names solely for the purpose of publicity.

Jenny is cool, but her book talks about she is able to afford the therapy’s that most of us only dream of or mortgage our homes for.  the therapy’s she mentions in the book are not hers, they are those of Berdard and Tomatis. Deidre Imus was a big factor in passing the Combating Autism Act, which is a lame act of empty promises. Where is she now? Robert Kennedy, now I was shocked to see how much attention he gets for helping Autism get reserach dollars, I thought he was an enviormentalist? And what is President Bill; Clintoln doing rasing money for children in far off lands, most of which wil never even see the dollasr raised when 1 in 150 children in the US are diagnosed with Autism, shame on you Bill! I don’t know, maybe I am wrong here and maybe, just maybe getting celebrity endorsement is better than none, but what have we gained since Autism is such a celebrity cause? A few best sellers or rehashed gobblee goop?

This is not a part time thing here, this is a life long condition and for most finanacial burden. What do we have to do, go on TV and get sponsors for individual families here in the states? We need insurance reforms like we see taking place in a few states like New Jersey, we need the medical community to rally here. Autism is horrible and the numbers climb ever day, why is it not being treated as an epidemic, but rather as a celebrity attention grabber!!?? What are your thoughts. Please share them and lets take the bull by the horns ourselves and Unlock Autism.

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Jenny and Jim, Autism Awareness’s newest and some of the most visible advocates for Autism reserach and CHANGE to lead march on Washington.

March on Washington DC to Clean Vaccine ingredients and request a better vaccination schedule.
JUNE 4th 2008 Visit www.tacanow.org for more info

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Seems a bit like covering one’s tracks here. Seizures and Autism commonly go – hand in hand and can trigger serious health issues which lie dormant in the body.

Written and owned By Michael Smith, North American Correspondent, MedPage Today Published: March 14, 2008

Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston.

ATLANTA, March 14 — An apparent increased risk of febrile seizures has led the CDC to soften one of its recommendations on immunizing children against measles, mumps, rubella, and varicella with a combination vaccine.

The agency had said the combination tetravalent vaccine against the four diseases (ProQuad) was to be preferred over vaccination with a trivalent measles, mumps, and rubella vaccine at the same time as a separate varicella shot.

That preferential recommendation has been withdrawn. The agency’s Advisory Committee on Immunization Practices (ACIP) now says there should be no preference, the CDC said in the March 14 issue of Morbidity and Mortality Weekly Report.

The change comes after review of data from the Vaccine Safety Datalink, which monitors vaccine safety, as well as preliminary results from a post-licensing study conducted by Merck, which makes the tetravalent vaccine.

The Vaccine Safety Datalink, the CDC said, showed a signal of increased risk for seizure among children ages 12 to 23 months who were given the tetravalent vaccine, compared with those who got the trivalent vaccine.

The increased rates were seen seven to 12 days after vaccination.

Once the signal was seen, the agency said, analysts used the Vaccine Safety Datalink for a study comparing seizure rates among children who got the tetravalent vaccine and those who got a trivalent vaccine plus a varicella vaccine at the same visit.

The analysis included 43,353 children ages 12 to 23 months who received the tetravalent vaccine and 314,599 who received the trivalent vaccine and varicella vaccine at the same visit.

The researchers reviewed medical records to validate the diagnosis and used a multivariate logistic regression to adjust for age and influenza season, the CDC said.

Results of that analysis showed:

* A rate of nine febrile seizures per 10,000 vaccinations among recipients of the tetravalent vaccine.
* The rate was four per 10,000 vaccinations among those who got the trivalent vaccine along with the varicella vaccine.
* The adjusted odds ratio was 2.3, with a 95% confidence interval from 1.6 to 3.2, which was significant at P<0.0001.
* Of the 166 children who had febrile seizures after vaccination and had hospitalization information available, 26 (or 16%) were admitted to a hospital.
* There were no deaths.

The advisory committee was told that interim data from the Merck post-licensing study showed a similar relative risk for seizure, although the difference did not reach statistical significance. Only about half of the final sample size needed was available for the analysis.

Neither study looked at the risk of a febrile seizure after the second recommended dose of the vaccine, at ages four through six years.

The CDC noted that the tetravalent vaccine is currently in short supply in the U.S., because of manufacturing problems not related to safety, and is not expected to be widely available before 2009.

The agency also said that febrile seizures are not uncommon in children and generally have an excellent prognosis.

Additional source: CDC
Source reference:
CDC “Update: Recommendations from the Advisory Committee on Immunization Practices (ACIP) regarding administration of combination MMRV vaccine” MMWR 2008; 57(10): 258-60.

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All we seem to hear about these days is the debacle facing the mortgage industry and the looming “National Foreclosure Crisis”. I personally do not know of anyone who is going through foreclosure, but based upon the news coverage, it seems everyone has a condition named “Foreclosure.” There is currently underway a government bail out for the many consumers who traded up to most likely, what they couldn’t afford in the first place or to simply live large on equity. But that’s another story. Last week or so I heard on Face The Nation or some other Weekend News show that 1 in 550 familes are facing mortgage default and or foreclosure - “An Alarming Rate” said one politician, “The most in the past 30 years”, said another. “Too Much for the country to bare, a real crisis and burden to the economy.” So a multi-billion dollar bail out is underway, through interest rate cuts and government loans.

Now I am not saying this isn’t important to do as a nation. Our economy is our best strength for sure. But unlike the Mortgage Foreclosure fiasco- which mostly affects people in the the Southeast, Southwest and California, and one we generally took on ourselves,  Autism knows no geographical boundary’s and today affects every town, county, city, state and country in the world, with intolerable indifference in selection by social standing, financial well being, class, race, religion and or nationality. Today- Autism affects 1 in 150 families or more and poses a lifelong commitment to a roller coaster of emotions an feelings an is expected to cost 200-400 Billion dollars ANNUALLY by 2010.
SO I have to ask, sine the numbers are so similar. Where is the multi-billion dollar bail out to help save our children, unlock or at least better understand this disease?

The awareness of Autism is on the rise for sure, we are light years from just 5 years ago in terms of awareness, research and understanding, but why is the very thing that has shown to help improve a child with Autism so unobtainable still today? Why do I have to spend $20, $30, $40,000 per year or more on therapy’s which only guarantee hope as the next great thing? Why is the school system an absolute joke for most children with Autism? Why do we have to wait 2 years to get into a program identified to offer the very things my child needs, mostly due to a lack of funding to expand? Where do George, Dick and the Presidential Candidates stand on Autism Research?

Ask your politician – what are you doing specifically to help find a cure, financial support for families, better therapy’s and more understanding of Autism and other PDD’s? And use the foreclosure vs Autism stats to show your point.

If you visit this site, you can replace “Foreclosure” and “Foreclosure Filings” with “New Autism Diagnosis” to give you an idea of just what 1 in 150 means. There were 220,000 new foreclosure filings in October and the number of people who have been diagnosed with Autism has reached  770,000.  WOW. Think about that for a while.

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By LIDIA WASOWICZ
UPI Senior Science Writer
SAN FRANCISCO, May 18 (UPI) — There is at least one dilemma that confronts virtually every family with an autistic child, at one point or another: the problem of access to needed services.By federal law, public schools must provide appropriate education for youngsters with autism, beginning at age 3, although programs vary by state and some families opt for private treatment, especially when the child is very young.

However, early intensive therapy is so expensive — averaging $33,000 annually, by some estimates — many districts refuse to foot the bill.

In addition, because of a lack of scientific support for certain interventions, parents often find themselves fighting health insurers to grant coverage or suing school systems to provide home-based instruction.

Some moms and dads take up the therapist’s role themselves or train college students — who come at a fraction of the cost of specialists — for the job.

“There’s very vigorous debate about which methods are optimal in a given situation for a given child, but there is virtually no debate any more about the need for intensive intervention, which means expensive intervention,” said Michael O’Hanlon, a senior fellow at The Brookings Institution, one of the oldest research centers in Washington.

“These treatments are simply unaffordable at the intensity that’s necessary to make them work.” added O’Hanlon, noting the out-of-pocket tab for his child’s therapies tallies up to some $75,000 a year.

Dr. Eileen Costello, a pediatrician on the staff of Boston University School of Medicine, said she finds third-party payers so unyieldingly reluctant to cover the bill, she sometimes has to stretch the rules to circumvent them.

“I call my friends that are developmental and behavioral pediatricians and say … ‘I want this kid to get this service. What code do you think I should use?’ And … it’s sort of sneaky, and you feel like you’re breaking the law, and we probably are,” she told an autism conference.

“But … when you’re in an office with a child, and you know he needs a certain service, you’re going to do whatever you can within reason to get that service for that child. But it shouldn’t have to be that way.”

Severe restrictions on service availability are nullifying the hard-earned gains made in physicians’ ability to diagnose the neurodevelopmental disorder early, said Barbara Firestone, president and chief executive officer of the non-profit autism service center The Help Group, based in Sherman Oaks, Calif.

“(A)ccess to intensive early intervention is still very limited in our country,” she said. “Identification without intervention is an incomplete and seriously flawed policy, very deficient.”

There are glimmers of hope, including some promising federal efforts such as the Combating Autism Act of 2006, signed by President Bush last year, which authorizes close to $1 billion over five years for autism research, screening and early detection and treatment.

The Children’s Health Act of 2000 mandated the establishment of an Interagency Autism Coordinating Committee to organize autism-related research, programs and initiatives.

An expert panel convened under the plan to focus solely on services came up with a laundry list of 50 challenges to developing and delivering care to children with autism.

“(The) five that I think are particularly important: That we don’t have professionals who are trained to deliver these interventions; that we have no consistent funding mechanism for treatment; that it varies tremendously by locality; (that there is) no established standard of care; that … we have multiple agencies that are responsible for the care of children with autism, and those agencies don’t coordinate that care very well (leading) to extraordinary variation in how care is organized, financed and delivered,” said panel member David Mandell, assistant professor of psychiatry at the University of Pennsylvania School of Medicine in Philadelphia.

“(I)t’s a new paradigm for thinking about children with these disorders and how we care for them,” he told an autism conference. “Until things change at the federal level, it’s not going to filter down to states and localities and practices so that these treatments can be delivered in a meaningful way.”

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Sounds more like Politics as Usual, how do these people sleep at night. Lets be careful and listen intently on what politicians say and do..

Reneged autism promise will hurt Liberals

/ From the St. Catharines Standard
Editorial – Saturday, April 14, 2007 @ 12:00

By refusing to hear an appeal from a group of Ontario families with autistic children, the Supreme Court of Canada has thrust the issue back from whence it came.

The families had challenged the provincial government’s refusal to pay for an intensive therapy that clinical studies have proven to be quite effective in helping kids living with autism.

The high court gave no reason for rejecting the appeal, but observers believe it was because the Ontario case is similar to one the court heard from British Columbia three years ago. In that case, the Supreme Court found a provincial decision to not fund autism therapy isn’t a violation of the Charter of Rights and Freedoms.

While it’s a setback for those demanding the province fund treatment for their kids, it’s not the end of the line.

The court’s refusal to hear the case keeps this issue solidly in the political arena, and that is where it will have to be resolved.

It never should have come to this.

During the 2003 provincial election, families with autistic children were acutely aware of the government’s policy and for them it was a hot button issue in the weeks leading up to the vote.

In a nutshell, they were incensed with the Ernie Eves Progressive Conservatives and a government practice that cut off funding for IBI therapy when a child turned six.

As the argument went, it was discriminatory, a violation of these children’s rights under the Charter of Rights and Freedoms.

As it was, the issue was very political. The Tories had to defend their record. The NDP and the Liberals lined up to attack it.

On the campaign trail, Liberal Leader Dalton McGuinty was dropping promises across the province, endearing himself and his party to Ontario voters.

One of those promises was to extend government support of IBI therapy for autistic children past the age of six.

This is what the parents of autistic children wanted to hear.

They started to put their support behind McGuinty. They talked to their families, neighbours and friends and encouraged votes for the Liberal party.

The Liberals won the election, and then reneged on the promise.

Not only did McGuinty fail to meet the pledge, his government has spent an untold amount of taxpayer money (the government has refused freedom of information requests for the amount) defending its autism policy against the lawsuit from angered parents feeling, quite rightly, betrayed.

Put this one in the file with the Liberals’ 2003 campaign promise not to raise taxes. It should also put to rest any questions about why recent polls have McGuinty trailing PC Leader John Tory by 10 points when questions about leadership are asked.

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