Dear Mr. President:
I received a form letter from Vice President Joe Biden recently -- one of those mass emails one gets but rarely reads. I read that if I were to make a donation of $5, my name will be thrown into a hat for a chance to have dinner with you. Alone.
I imagined what I would say to you, Mr. President, if I had the opportunity to have dinner with you. And of course I knew what the answer was without hesitation. I would speak with you about the rising number of children diagnosed with autism. In 20 years there has been a 600-percent increase in diagnosed cases of autism. I would direct you to the countless news stories regarding the rampant abuse of those same children and adults living in group homes and institutions. I would ask you to help set up communities where individuals with autism were treated with respect and would have more control over how they lived, allowing them to pursue their interests and encouraging them to follow their dreams.
Mr. President, I would tell you about our trips to Central America with our daughter Emma for stem cell treatments. I would encourage you to put more funding into stem cell research, umbilical cord stem cells, using the patient's own stem cells and any other form of stem cells that might prove viable in restoring the lives of hundreds of thousands, even millions.
I would recite the staggering number of children diagnosed with autism: 1 in 110, though many believe that number is much higher. Of children with autism, between 25 and 30 percent have some words by 12 to 18 months of age and then lose them; 40 percent of children diagnosed with autism do not speak at all.
I would emphasize the fact that there is no cure. There is no known cause. I would go on to explain why all of these things cannot be ignored. I would speak of how our society is not set up to care for this maturing population: we do not have the services, we do not have the money, we do not have the resources and we do not have the training.
As I continued to think about all the things I wanted to say and ask for in the name of autism, I thought of the families like mine who have been affected. I don't just mean on an emotional level, but financially, as well. An autism diagnosis is financially devastating to any family. The lifetime cost of an individual with autism is said to be $3.2 million. Our family has chosen to pursue a more aggressive route than many can or want, but any family, even those who have not taken their child to foreign countries for stem cell treatments, has found the cost of caring for a child with autism staggering. For those who have little or no resources, who have to rely on social services to help them, who cannot afford to have a caregiver come to their home to give them a break, they live in a world starkly different from those with similar financial constraints who have neurotypical children.
So, Mr. President, on the off-chance that my name is not chosen and I do not have the opportunity to sit down with you, can you please help galvanize the medical community and make autism a priority in research? Can you look at what we're doing when we cut so much funding from our already-overwhelmed schools? Can you earmark autism as something we need to find answers to?
Five dollars is not much to contribute to your campaign; how much will it cost to have you take a good, hard look at what so many families are coping with -- often alone?
To read about the genesis of my blog about my daughter Emma's journey through a childhood of autism, go to: www.EmmasHopeBook.com.
Follow Ariane Zurcher on Twitter: www.twitter.com/Arianezurcher
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Autism Fact Sheet: National Institute of Neurological Disorders ...
CDC - Autism Spectrum Disorder (ASDs) - NCBDDD
Living with autism in a world made for others - CNN
Autism is the Nine-headed Hydra of this nation. And no one seems interested in slaying the dragon.
1) Autism is an epidemic ravaging a generation of our children.
2) Autism is breaking the budgetary backs of our schools.
3) Insurance coverage for Autism is still denied in most states.
4) Only families with lots of money get best practices and effective treatments for their children.
5) 1 in 91 children with autism are aging into adulthood with not a concern or preparation shown by our government. What will happen to them when their parents are gone.
6) Our schools are so overwhelmed they lump these kids into exclusive classrooms, apply low expectations, and sometimes even abuse them.
7) Parents are ignored, even by you. Eyewitness testimony of what happened to our kids is written off a conspiracy theory whackism.
8) When the unusual doctor comes around that listens to parents, treats the symptoms, investigates the whole health of the child, and helps kids get better, they are written off as charlatans.
9) Polio affected 1 in 4,000 children and the president of the United States called on every scientist to drop what they were doing and fix this problem. We have 1 in 91 with autism, all within a 25 year period, and we get obfuscation, denialism, and a president that seeks counsel on Autism from the same crowd that told you it was all genetic and there is no epidemic. Shame on you.
Dear President-Elect Obama,
I envision a country where the health of our citizens trumps pharmacy and every one of us "pays-it-forward" through sharing what we know and can do to help others have better lives.
My daughter suffered permanent neurological, gastrointestinal, and motor damage as the result of our modern-day, one-size-fits-all from newborn to 400 pound men, "standard of care" at three months of age; her decline continued through the third year of her life. As a matter of fact, until she was nearly five, mainstream physicians, educators, and therapists wrote her off as destined for institutional care.
Thank God for a very special community of parents and doctors who have dedicated their lives to helping children like my daughter - they gave me the tools to help my daughter regain her future. She is nine, now, although she will always struggle with her severe developmental disability, neurological impairment, GI dysfunction and more (and despite these high hurdles), she is finally participating as a "typical" child in school and at play - a stranger would never guess the challenges she faces moment-to-moment, all day long.
My point is that our practice (and I chose this word purposely) of medicine is dangerous.
For the majority of pharmaceutical products prescribed for and injected into this population no long-term safety studies have been performed. No research has been performed to ascertain the safety of concomitant administration of these products (neither short-term, nor long-term). Most alarming is the fact that none of the products injected into this population have been proven efficacious. The products used on these, smallest, American citizens are causing this generation of children to be the most sick (rampant autoimmune illness) and the most disabled (1 in 6 children are suffering a developmental disability).
This said, some of us are finding that certain interventions can enable our children to have better health and developmental outcomes. Although these interventions cannot stop the damage, we ARE mitigating the damage in a substantial population of children. These children are regaining developmentally lost years and finding their place in "typical" classrooms and peer groups.
I am (and have been for over four years) doing my part. I run a tiny one-woman non-profit to help families improve their lives with Autism. The only thing I ask in return for my help is that families "pay it forward." The vast majority of families who contact me are seeing their children making giant strides toward better quality of life. However, I am just one person and I am spread too thin. I am a member of a large movement, we all share information and help one-another - but we are not heard over the propaganda carried by the media outlets, funded by the pharmaceutical companies that are destroying our children.
Please, please, PLEASE put on your cross-examination hat and READ what is in our vaccines, have your staffers actually RESEARCH the vaccines and drugs prescribed for children ten and under, ask the manufacturers of ready-to-eat foods why they use neuro-toxic dyes, DEMAND an answer as to why our drinking water contains potent pharmaceutical agents and poisonous chemicals.
My husband frequently criticizes me for my idealistic ways and dogged efforts to change the world into a better place. Call me the eternal optimist, I know it can happen - all it takes is vision.
Thank you for not simply reading my words but acting upon them.
Sincerely,
Liz Parker
Hopeful American, Mom, Wife, Volunteer, Autism mom,
I wonder why we don't know the cause of autism: might it be that the truth would be just too inconvenient? I take it you are posing a rhetorical question.
In 2006 the then head of the Human Genome Project, and now head of the National Institutes of Health, Francis Collins, told Congress in budget request that the rise in autism must me environmental.
http://www.genome.gov/18016846
We also know of at least 83 vaccine injury awards for brain damage including autism.
http://digitalcommons.pace.edu/pelr/vol28/iss2/6
And we have lots and lots of vaccinations. Why do the NIH keep fumbling, why isn't this recognised as an international emergency, why do they squander millions of dollars on projects which are designed to find nothing? These are just some more rhetorical questions. The cynical negligence is manifest.
John Stone, AgeofAutism.com
If I could have dinner with President Obama I ask him how we're going to pay for the autism epidemic. I'd want to know why the CDC and mainstream medicine are content to leave autism as the perpetual mystery.
Anne Dachel
Media editor: Age of Autism
annedachel.com
The national rate of one in every 110 children is based on studies of eight year olds. When we talk about autism, we're always talking about children with autism. No one has ever found a comparable rate among adults, especially of those with classic autism, whose symptoms are undeniable.
The one in 110 studies were done on 8 year olds in 2006; those children are teenagers now. No one has bothered to update the numbers. The agency charged with health care, the Centers for Disease Control and Prevention, has shown little interest in autism. They have never used the term "crisis" when talking about autism. The strongest language concerning autism from the CDC is, "serious health care concern."
Dr. Thomas Insel, head of the Interagency Autism Coordinating Committee (IACC) created by Congress to deal with autism, has said that 80 percent of Americans with autism are under the age of 18 and he warned that we need "to prepare for a million people who may be in need of significant services." The IACC now calls autism "a national health emergency."
Anne Dachel
Media editor: Age of Autism
annedachel.com