Managing Editor's Note: In other Autism Speaks news, John Robison, Aspergian author and advocate resigned his position on the science board at Autism Speaks last week with THIS explanation. I've known John since before Look Me In The Eye was published and I consider him a friend. And while John and I differ on neurodiversity, I can agree that every American deserves acceptance and kindness and a full life. And I am encouraged by these words from him, "I also support the idea of developing therapies, treatments, and tools to relieve suffering and disability from both autism and the conditions that accompany it for some people. I know how hard life is for some on the spectrum, but I also see the gifts other autistics bring. " I do not see my girls' autism as bestowing gifts upon them - autism hobbles them 24/7. I do love them 100% and if they never make one iota of progress I will always love and care for them. Society, however, will not - unless we work toward treatment, therapies and a huge amount of social services. I do not have autism or Asperger's, so I don't think like someone who does. I think like an NT Mom. It's a distinction we sometimes ignore as we point fingers and choose sides. I'm moving past that - I have too much work to do for my kids. I have found AS to be as effective as a fish on a bicycle, disingenuous and and counterproductive to everything that darling boy in the photo (who is much older today) needs. My $.02. Thank you, Anne for this open letter.
By Anne Dachel
On Nov 11, 2013, Autism Speaks put out an announcement---their "Call for Action."
Suzanne Wright wrote there was to be a "first-ever national policy and action summit" starting Nov 12 in Washington. She sounded an alarm about the lack of response and the need for action regarding the autism crisis in the U.S.
I carefully read what she said and I have a lot of questions about what this summit proposes to do. I decided to write. . .
MY OPEN LETTER TO SUZANNE WRIGHT:
I don't really see what you mean by a national plan and I can't imagine America waking up to the autism crisis.
Just what would a "national plan" entail? So far, when it comes to autism, no one anywhere is doing anything. Health officials at the Centers for Disease Control and Prevention in Atlanta, the people who get billions of dollars to run health care in the U.S., have barely noticed autism.
You refer to autism as "a monumental health crisis." No one at the CDC has ever called autism a "crisis." "Serious health care concern" is the strongest language they've used. In fact, regardless of the soaring rate increases that no one can reasonably explain, they regularly announce that they don't know how much, if any, of the increase is real or how much is still more of the better diagnosing that's been going on for years. Maybe some of your efforts should be spent educating the experts at the CDC.
"If three million children in America one day went missing - what would we as a country do?"
"If three million children in America one morning fell gravely ill - what would we as a country do?"
Seriously, we'd be moving mountains to STOP IT. We'd find out who took our children. We'd find out what was making our kids so sick.
We never do that when it comes to autism. Doctors can't explain it and we pour millions of dollars down a narrow, dark hole looking for a solely genetic cause or some strange association. We ignore the hundreds of thousands of parents who gave birth to perfectly healthy babies and then watched as they suddenly and dramatically got sick and regressed into autism following routine vaccinations.
Where was Autism Speaks in 2008 when the late Dr. Bernadine Healy, former head of the National Institutes of Health, was on CBS News? She said we need to look at the children who got sick, the ones who were thriving and happy but who suddenly and inexplicably regressed into autism. Five years later, that still hasn't been done. http://www.cbsnews.com/video/watch/?id=4088138n
"So let's dial back a minute and consider the babies being diagnosed with autism every day in this great country."
So why are children being diagnosed like this on a daily basis? When I was young, I never knew a single child who displayed the symptoms of autism. Not one. I never knew kids who couldn't talk or who wandered away or who rocked and banged on things continually. I sure know lots of them today.
With all the money Autism Speaks raises, why hasn't AS funded that one study that could really shed some light on what's causing autism?
Why doesn't anyone want to see a simple comparison study of fully-vaccinated and never-vaccinated children? It would settle a big question overnight. If one in every 50 never-vaccinated children also has autism, the proof would be there for everyone to see. There are now so many parents too afraid to vaccinate that the study group is out there. Our health officials do retrospective studies like this all the time but they refuse to call for one that could end the most heated controversy in pediatric medicine. And neither does Autism Speaks.
"Financially, we estimate it costs 2.3 million dollars to care for one person with autism for their lifetime."
Actually, that figure is way off the mark. It was from a study done by Michael Ganz at Harvard back in 2006. At that time he told me it was a "conservative" figure. I have friends in Minnesota who have a severely disabled autistic teenage son who lives in a group home. They told me that he'll easily cost the state over a million dollars by the time he's 21---and that doesn't include that cost of his education.
"There is no national plan to build a city for 500-thousand people."
I'm sure this comes from the oft repeated statistic from Autism Speaks that 500,000 children with autism will be aging out of school in the next decade. There are calls to provide for these young adults. Any logically thinking person would want to know what's going on here. Why isn't there anything for them? Why can't autistic young adults go where autistic adults have always gone? And where exactly is that? Why can't anyone show us the 40, 60, and 80 year olds who act like so many of our children with autism? Why hasn't AS funded a study to find the one in 50 adults with autism? I'd settle for one in 200 or 500---especially adults with classic autism with all the obvious signs. If we continue to do nothing to stop this disaster, we're going to have to build lots of cities for hundreds of thousands of adults because they're going to keep on coming.
Finally, it's too bad you weren't in D.C. on Nov 7. On that day, a group of parents held a congressional briefing on the Vaccine Injury Compensation Program. One of the speakers was Rolf Hazlehurst who's an Assistant District Attorney General for the state of Tennessee and the father of a boy who developed autism following vaccination.
He described a government program so corrupt that no one can legitimately say that there isn't evidence vaccines cause autism and that the government doesn't know about it, because they obviously do.
Last Nov 29th your husband gave testimony before the U.S. House Reform Committee. He said that his 11 year old grandson Christian was born healthy and was developing normally. "We thought he was very precocious. He seemed to be brighter than average. He had an enormous vocabulary and then he lost everything."
He added, "I'll tell you without any secret, my daughter firmly believes that vaccines were the relationship that triggered him into this pit."
Shouldn't part of our "national plan" also include finally honestly and thoroughly addressing this issue?
Anne Dachel, Media editor: Age of Autism