By Anne Dachel, Media Editor
An Associated Press STORY came out on Dec. 3 that was published in the Enterprise-Record in Chico, CA. The headline, "Autism Explosion Due in Part to Expanded Defintions" is what got my attention. We were assured once again that while it may seem that there has been an "autism explosion" in the U.S., that couldn't be farther from the truth.
We have long been used to the phrase "better diagnosing by doctors" to explain the epidemic number of children with autism; here we're additionally told that it's because "in the 1990s, the autism umbrella expanded and autism is now shorthand for a group of milder, related conditions, known as 'autism spectrum disorders.' "
The main message being sent is that we have nothing to worry about because "many experts believe these unsociable behaviors were just about as common 30 or 40 years ago. The recent explosion of cases appears to be mostly caused by a surge in special education services for autistic children, and by a corresponding shift in what doctors call autism." It seems that children with autism were always here like this, we just didn't know it.
Since this story came out of Atlanta, home of the Centers for Disease Control and Prevention, the expected CDC comments were included. Dr. Edwin Trevathan, director of the CDC's National Center on Birth Defects and Developmental Disabilities, was quoted saying, "Even in the early 1980s, some parents were more comfortable with a diagnosis of mental retardation than autism." But now it seems things have changed. Today "there's a powerful incentive for physicians and schools to classify children in a way that gets services." That was stunning. Rarely have I ever heard about parents who thrilled over the services their kids are receiving.
So why was CDC getting the message out again? It's been said by officials so many times it may as well be included on an electronic message board outside the CDC headquarters.
Far too many stories are in the news citing frightening numbers of children with autism, and the CDC just can't account for them all. Their best bet seems to be to pretend that all these disabled kids are nothing new. As a parent and as a teacher it reminds me of a child being disciplined for something who keeps repeating their denial with the vain hope that if they just say it enough times, it'll really be true.
On a daily basis, we're presented with lots of local stories about the impact of autism. A recent example from Dec. 3 is THIS PA story, "Schools around the state deal with a growing number of children with autism. During the 2005-06 school year, there were 10,322 students with autism in Pennsylvania, up from 1,881 in the 1996-97 year."
There's a definite lack of help for those with autism in Pennsylvania. "Programs and services for autistic students are improving. But there are few health care providers and not many teachers with training in autism," said Keith Williams, an associate professor of pediatrics at Penn State University's Medical School.
Stories like this make it clear that the CDC can come up with pretend science that says that the autism epidemic isn't real, but they can't make these kids just disappear.
I'm always saying that if the CDC wanted to win the argument hands down on the question, Has autism increased among our children? --- all they'd have to do is to come up with one more autism study. This time they'd have to look for all those adults with autism who were missed when they were kids. They're the ones the CDC tells us were incorrectly labeled as retarded or emotionally disturbed or just quirky. We need to see the thirty, fifty, and seventy year olds doing all the things that kids with autism are doing. That would include stimming, toe walking, banging their heads on the walls, never getting out of diapers, running into traffic, being nonverbal or else talking incessantly on a single topic. They'd also have to have the allergies, seizures, and gut issues that many of our kids have. It would be easy to find lots of kids like this in any city in America so it shouldn't be too difficult for our top health agency to find the adults who are also.
What I can't get over is the claim that kids who have a diagnosis of autism somehow magically get all these services that Dr. Trevanthan said are available. Most parents I know battle to get help. They can't get insurance to cover therapies their children need, they dread the IEP meetings at school, and they're on endless waiting lists. Officials like Dr. Trevathan may paint a rosy picture of autism but recent news stories hardly make it sound like there's been "a surge in special education services for autistic children."
On WLNS-TV in Lansing MI THIS report let us know how much help families don't receive. With more than 11,000 children in MI affected, it has become a major issue. Private insurance isn't required to cover autism in MI and one mother of an autistic child reported, "I've spent thousands and thousands of dollars, probably upwards of $70,000 in treatment expenses."
Eighteen states have had to pass legislation to get insurance companies to provide some coverage for treatment of autism. THIS article in the Appleton Post Crescent reported on the efforts of WI Gov. Doyle to get insurance help for these kids. We were told that he's got an "uphill battle in the state legislature" because "Wisconsin Manufacturers & Commerce, the state's largest business group, and America's Health Insurance Plans, which represents more than 1,300 insurance companies oppose the proposal."
Newsday in NY on Nov. 8 had THIS story, in which we found out that "autism imposes devastating financial as well as emotional penalties on parents of children afflicted with the disorder, and Long Island schools need to provide more help." Furthermore the report said, "Schools try to hold down the number of students classified with disabilities."
In The Tuscaloosa News, Dec. 4, University of Alabama professor Laura Grofer Klinger cited a "dire need to increase services across the board, from screening and diagnosis to early intervention, school-based services, adult services, medical training and family support" in Alabama.
It really doesn't sound like things are very autism friendly out there and the future forecast is cold and overcast. Take for example the Newsday piece HERE Nov 30 by Delthia Ricks. In it we were told that the "800 percent growth rate in children with autism over the past 20 years is translating into an explosion of adults with the condition." And we heard about "the need for jobs and support programs." Seriously, why should there be a need for jobs and programs? We've been told there have always been so many disabled people like this. What did we do with them before we knew they had autism? There really shouldn't be a problem.
I was most impressed by THIS story, A Shot of Truth on ABC affiliate TV-13 in Asheville, NC on Nov. 30. Amy Carson, a courageous mother of an eleven year old son with autism, described how autism affected him and she left us with a ominous comment: "We have well over 200,000 children in North Carolina in special ed. There's a problem." And about her son she said, "Kitt's future is still so very uncertain. I fear for that the most."
I fear for all the children that we see everywhere but who are invisible to federal health officials. I can't imagine what the future will be like for our country and for all these disabled children when they reach adulthood. We are doing absolutely nothing to prepare for their support and care.
It must be that kids with autism are never meant to become adults with autism. I keep thinking of the play "Peter Pan." Peter Pan lived with the Lost Boys on the island called Never Never Land where they spend their never-ending childhood. I guess our kids are expected to be like the characters in the play and stay young forever -- much like the song "I'll Never Grow Up "in the play:
I'll never grow up, never grow up, never grow up