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Living with Autism: What I'd Say If I Had Dinner with President Obama

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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.

Around the Web

Home | Autism Speaks

Autism Fact Sheet: National Institute of Neurological Disorders ...

CDC - Autism Spectrum Disorder (ASDs) - NCBDDD

Living with autism in a world made for others - CNN

The Autism Life.Com | The Autism Life

YouTube - Living With Autism

Easter Seals: Living with Autism Study

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