By Anne Dachel
In August 2006, I wrote a piece called, The Really Big Lie about Autism. (HERE) It was about the claim by the medical community, health officials, and a parade of reporters, that the epidemic of kids with autism and related disorders overwhelming our schools, is the result of "greater awareness" and "better diagnosing."
Back then I wrote, “I'm constantly pointing out that the explosion in special needs kids in our schools can't be explained away so simply, but no one seems to notice.”
I said that we’d seen an exponential increase in autism in the last twenty years from one in 10,000 children to one in every 166 children. Since my son is part of the first wave, I’ve watched autism go from an unknown disorder to one of the most common disabilities affecting our children.
Then in August, 2009, I again wrote on the denial of any increase and I called it, The Really Big Lie about Autism, Thomas Insel Testifies. (HERE) Dr. Thomas Insel, head of the Interagency Autism Coordinating Committee (IACC) and the director of the National Institute of Mental Health, had just testified before the Senate Appropriations Subcommittee chaired by U.S. Senator Tom Harkin. At the time of this meeting, the autism rate had climbed to one in every 150 children, but nevertheless, Insel still wasn’t convinced that the numbers were really going up. He left it all just a big mystery.
Insel: ‘We have to remember the difference between prevalence, which can be affected by ascertainment, by changes in diagnosis, and the difference in incidence, which we don't have right now, good evidence that there's a true increase in the incidence...the rate of new cases.’ He added, ‘That's an area that requires more research.’
Then, four months later, in December 2009, the official autism rate jumped to one in every 110 children, one in every 68 boys. When that happened, Insel was one of the first to admit that the increase in autism was real. The cause was still a vast mystery, but environmental factors had to be involved for the numbers to continue soar.
In December, 2009, speaking at MIT, Insel said, "I said before this isn't just genetics... There have to be environmental factors."
By the spring of 2010, Insel was really getting concerned about the impact of autism. At the National Institutes of Health, he said, "Eighty percent of the people with a diagnosis of autism [in the U.S.] are under the age of eighteen." In Insel’s own words, “If you look at those numbers, the increase and recognize how many of those kids will become adults, we ...also need to be thinking about how we prepare the nation for a million people who may need significant amounts of services as they are no longer cared for by their parents or as their parents are no longer around."
That’s frightening information. An unexplained disability is overtaking a generation of children. So what actions are authorities taking to address this emergency? What are people like Insel and others saying needs to be done?
We’ve been lost in an autism dream for the last 20 years. Officials have calmly reassured us that no matter how bad the numbers, don’t worry---nothing’s really different; autism has always been around.
Insel has gone on the record publicly announcing that a disaster is looming on the horizon. The clock is ticking. A million needy adults with autism are coming. (And when everyone starts to demand to know why we’re totally unprepared for one percent of young adults with autism, Thomas Insel will be able to say that he tried to warn us.)
Recently, Katie Wright wrote about two meetings by officials who are supposed to be dealing with autism. There is no more proof needed to show that the neither the government nor the medical community will ever do anything about the autism epidemic. What is clear is that they’re paralyzed by autism.
The first was an IACC meeting. (Remember the IACC was created by Congress to deal with autism.) (HERE) In summary, the IACC bickers over everything and admits nothing when it comes to autism.
For example, Dr. Gerald Fischbach of the Simons Institute is a member of the IACC and he’s made a name for himself recently going on the record saying that there’s no possibility of a cure for autism. See video: HERE And on another panel discussion, Fischbach talked about why he’s sure that vaccines don’t cause autism. See video: (HERE) He announced, “Mercury has been removed from the vaccines since 1987…and the autism reported prevalence …is on the rise. I believe the reported prevalence …is due to wider recognition, broadening of the criteria.“
Fischbach cited the Diagnostic and Statistical Manual changes that he claims account for the skyrocketing increase in autism. “I believe the prevalence was just as high twenty years ago, just not recognized. I don’t believe there’s something that’s happened in the environment.”
Fischbach may have meant to cite a date other than 1987 for the removal of mercury, but he completely rejects the idea that autism has had any increase at all. This man is a member of the committee that is supposed to be doing something about autism and he sees nothing wrong with one percent of U.S. kids having autism.
Reading Katie Wright’s account of the latest IACC meeting makes a person wonder if the membership has ever agreed on anything.
Katie’s other new piece was on a meeting to discuss autism prevalence conducted by the Centers for Disease Control and Prevention. (HERE) Evidently, no one at this meeting has heard about what Thomas Insel said at NIH and MIT because they’re still debating if more kids really do have autism. Katie reported that a large group of scientists still don’t believe the increase is real.
“Dr. Paul Shattuck and Dr. Peter Bearman gave their usual stump speeches about why the ASD increase is mainly due to greater awareness and parental age.”
“It was very disappointing to hear Dr. Craig Newschaffer talk about how we can never know if the increase in autism is real. ‘We can never know.’”
The idea that genetics cause autism is still being pursued.
It all boils down to the fact that NO ONE KNOWS ANYTHING FOR SURE ABOUT AUTISM. NO ONE ADMITS ANYTHING.
AND NO ONE IS DOING ANYTHING ABOUT AUTISM.
Instead of circling the wagons and preparing for the autism onslaught, we’re pretending that it’s not going to happen. Why aren’t adults with autism ever a subject at any of these meetings? Tens of thousands of autism parents out there don’t even dare think of the future when they’re no longer around to care for their children.
All a person has to do is look at the news stories on autism to discover how wrong all these officials and experts are.
THE NUMBERS KEEP GROWING
In California recently, it was announced that autism continues to increase. News reports on the subject had stunning information like this story. (HERE)
“The number of children with autism enrolled in special education classes in California has tripled in the past eight years, according to the state Department of Education.
“The department's Special Education Division reported 59,690 students had autism in the 2009-10 school year, which was up from 17,508 in 2002.”
Regardless of the numbers, old excuses die hard. It’s still nothing to worry about. “But the hike in numbers does not necessarily mean there is an autism epidemic - parents and doctors are getting better at diagnosing children earlier, experts said.”
THE ADULTS ARE COMING
The latest news is that services for young people leaving high school simply aren’t there. In the surreal world of autism news, no one asks why there’s nothing for them. No one is worried and no one has any real solution.
On February 8, 2011, the Baltimore Sun had the story (HERE) , "Resources scarce for young adults with autism," New research the storyrch suggests that the wealth of resources targeting children with autism tends to decline after high school, begging the question: what happens to autistic children once they reach adulthood?
“Nearly 40 percent of all young adults examined in a survey of 680 19- to 23-year-olds had not received medical services, mental health services, case management or therapy, according to a study published this week in the Archives of Pediatrics & Adolescent Medicine”
This article begs the questions: Why aren’t there services? What did we do for autistic adults in the past? And why aren’t we sounding an alarm over what’s going to happen?
This new information on the lack of services for adults is a frightening omen for the future. For two decades experts haven’t known anything for sure about autism. Instead of real action, they’ve called for AWARENESS, ACCEPTANCE, AND ACCOMODATION.
The really big lie about the autism increase not being real is alive and well, despite what Thomas Insel warned about. The American people don’t question this lie. We’re used to it. We’ve had twenty years of experts telling us practically nothing for sure about autism and every imaginable lie to cover up the true impact that this disaster is having on the U.S.
I would love to personally attend one of the IACC meetings or a CDC meeting on prevalence. I’d show up with a huge stack of news stories on autism--ones about the lack of services and the growing number of children in our educational system. And I’d have ones about the absolute abyss out there when it comes to help for adults with autism.
There’s never been study that could find adults with autism at rates even remotely close to what we see in our children. NOT ONE. All those who proclaim that there’s been no real increase have never bothered to look for the hundreds of thousands missing autistic adults. I can go into the special ed rooms at my local grade school, middle school, and high school and find the kids who don’t talk, spin in circles and flap their hands endlessly. I can’t go to the nearby nursing home and find residents like that.
What will society be like as these children get older? Where are the group homes and institutions that will have to be there? The waiting lists for services will continue to grow and parents will get older and less able to care for their children. What happens then? Maybe no one wants to face that question, but it’s out there. It’s going to get louder and louder.
I can’t imagine what autistic behavior in adults will be like because I’ve seen so little of it. I know a number of people with autism in their twenties, but I’ve never seen someone forty or fifty with autism. But they’re going to be here. And we have nothing for them.
So I’m warning everyone to prepare for THE NEXT REALLY BIG LIE ABOUT AUTISM. It’ll be a lot like the one telling us that one percent of children have always had autism. Only now, we’ll also be told that having one percent of young adults with autism is nothing new.
We may not have anything for them, but we’re not going to be alarmed. We’re going to pretend that whatever happens is expected and normal. Officials will be looking into it, I’m sure. But I keep thinking of Insel’s words about preparing this nation for A MILLION ADULTS WHO MAY BE IN NEED OF SIGNIFCANT SERVICES. No one is doing that. Why should they? No one’s been told there’s a problem.
What are the chances that THE NEXT REALLY BIG LIE ABOUT AUTISM will work when we’re all paying for it?
Anne Dachel is Media Editor of Age of Autism