Guest Opinion: The Really Big Lie About Autism
The Really Big Lie About Autism
By Anne McElroy Dachel
This commentary is about something I've come to call, "the really big lie," which is surely based on the theory that the masses are more willing to believe totally illogical, absurd propaganda, than a small little lie.
I'm talking about the claim by the medical community, health officials, educators, and a vast parade of reporters, that the epidemic in kids with autism and related disorders overwhelming our schools, is the result of "greater awareness" and "better diagnosing."
I've been living with the really big lie for years but by now I am totally dumbstruck by the fact that it's still believed. It's not a lie as far as everyone who repeats it. To be fair, while it's a lie for many, it's a fallacy, medical myth, or just wishful thinking for others.
It's a crazy way to rationalize a health care disaster, but it works! I see it everyday in the press, usually backed up by quotes from a CDC official or a doctor. I've rarely, if ever, heard anyone in the mainstream media challenge people who make this pronouncement.
I'm constantly pointing out that the explosion in special needs kids in our school can't be explained away so simply, but no one seems to notice.
Although I have no proof of my belief, I'm inclined to think that the really big lie was started by some nameless individual deep within the recesses of the Centers for Disease Control and Prevention in Atlanta, being CDC officials never seem to tire of repeating the really big lie.
When faced with the skyrocketing increase in autism from one in 10,000 children, to one in every 166, including one in every 80 males, in just twenty years, coupled with the knowledge that this happened at the very same time that the CDC dramatically increased the number of mercury-containing vaccines on the childhood immunization schedule, CDC officials had to be desperate.
They never thought to add up the cumulative mercury totals with each new shot on the schedule and they had mandated each vaccine. The blame would fall squarely on their shoulders.
The CDC's response has been complete denial; after all if there was no real increase in disorders, everyone would be off the hook.
Thus was born the really big lie: There really aren't more children with autism. They've always been out there, we just didn't identify the problem as autism.
Like with all big lies, there must be proof to back it up and the CDC has given us lots of experts, studies, and findings of their own to do just that. I can't imagine the CDC getting away with the really big lie if it were used in attempt to explain away an epidemic of any disease affecting children, but because of the varied symptoms of the autism spectrum disorders, it seems to have worked for autism.
Since my son is almost 20, I've lived with the really big lie almost since its inception. In fact, I was probably among the first to hear it. This gives me a unique perspective and likely caused me to be a bit more skeptical about the really big lie than most people.
When John was three, his talking and interacting with people began to regress. It was so subtle that it's hard to remember when he first wasn't the alert, energetic little toddler he once was. Nobody seemed all that alarmed about it but me.
I enrolled him in a speech therapy class at the university which helped a little, but no one could explain why this was happening. I enrolled John in school at five and the next four years were one long struggle that I'd like to not even think about. No one understood him and his autistic behaviors were viewed as signs of immaturity, defiance, and anxiety.
In the second grade in 1993, John was diagnosed as "possibly autistic" by a psychologist from Minneapolis. I'll never forget how she made the statement that autism was a "rare disorder."
She said that it was doubtful that John would ever be able to live independently or hold a job. It was all rather hopeless and I was left pretty much on my own when it came to finding information on autism. So much was said back then about the rareness of the disorder.
We live in a town of 14,000 people and when I read that the autism rate was one in 10,000, I figured that it was unlikely that I would ever find another parent with an autistic child.
Although I taught school for eight years before I was married, I had never heard of a student with autism. This of course was all in the days before the invention of the really big lie, when the truth was still discussed about autism affecting only a small number of kids.
After what seemed a very long stay in grade school, where no professionals had any training or experience with handling kids with autism, starting in the fourth grade, I home schooled John.
Those were the good years. He learned at his own pace. Being a teacher myself, I designed a curriculum that he could work with. Some things he could do with no help, others were like a hopeless mystery.
John took piano, and we were all in 4-H and belonged to a home school social group. We took vacations and John had a paper route, but he was still pretty unresponsive when he was around strangers and he didn't like to go to public places.
When John was fifteen, everything changed. I found a doctor who specialized in developmental disorders. I wanted to learn how to get John to interact more with people.
This was when I got the shock of my life. In the eight years since John's original diagnosis at seven-years-old, the rates for kids with autism had exploded. Suddenly, doctors and educators knew about autism. Kids with autism were everywhere. The doctor's assistant even had two autistic sons of her own.
In fact, I learned that now there was a whole spectrum of autistic disorders and John's was called Asperger's Syndrome.
I'm pretty sure that this was when I was told the really big lie for the first time---that all of the autistic kids were the result of "greater awareness and better diagnosing," and that autistic children used to just "fall through the cracks" or were labeled with other disorders.
It didn't make much sense, but at least I had a lot of company now.
John's doctor had us combing through our family tree trying to find our "autistic relatives" that were labeled with something besides autism. This was also when I first heard of the "autism gene" supposedly responsible for this "inherited condition."
When I was first told that John had Asperger's Syndrome it was such a rush of relief because I assumed that there would be people to help John and school programs for kids like John that were not available when he was diagnosed eight years earlier.
This is when I realized that the really big lie was just that, a really big lie. There was a huge disconnect between the really big lie and the reality of services. If these kids had been always been around, what had the schools done with them?
I mean, it's impossible to ignore a child with autism, they must have had something for them. I was one of the original members of an Asperger's Syndrome parent group at a local hospital and I met so many people just like me struggling with children and nowhere to turn to.
When I first started hearing about the rise in autism cases, I knew immediately that John and others like him were just the tip of a very large iceberg hidden underwater for the moment but not for long.
The one thing that scares me more than anything else in life is wondering what will happen to these kids once they are adults if we can't even provide for them in schools as kids.
My son is considered mildly affected with autism now. He is much improved from the hopeless student in the second grade. He is fabulous on a computer, he has his driver's license, he rides horseback and plays the organ and piano. He is great at conversation at home now, but his social skills are still limited in new situations and with strangers.
Once he finished school, John became eligible for Social Security disability payments. When my husband took John to apply, the Social Security worker filling out the forms asked, "Why are there all these young people with autism going on disability?"
Evidently, she hadn't yet heard the really big lie, being she was so surprised at all the people with autism. My husband told her to get used to it, there were lots more coming, including many who were severely disabled in need of much more help than John.
The reaction of the young Social Security worker could be a sign that we're fast approaching a crisis with the really big lie that threatens to expose it to all.
Right now, eighty percent of autistic Americans are under the age of 18. This is another thing nobody seems to think about. What happens when one out of every 166 eighteen-year-olds goes on disability for life with autism?
Years ago, I used to hear projections about the enormous cost to society when the baby boomer generation retired. I don't hear anything about the generation with autism. They won't have pension plans, IRA's, veteran's benefits, or home equity. They will never pay into Social Security, but they will need to live on disability payments for life.
I don't know how much longer the really big lie is going to work. Throughout history, there have been many plagues and diseases that have resulted in the deaths of millions, but this will be the first time a society has been left with a generation of disabled young people to care for.
When the American taxpayers realize that their bill for all this "greater awareness and better diagnosing" will be in the trillions, I don't think they're going to buy the really big lie.
I suppose government officials will then have to invent a new lie. Only this time it will have to be a really, REALLY big lie and I can hardly wait to see what they come up with.
Anne McElroy Dachel Chippewa Falls, WI
Mother of a son with autism Member: A-CHAMP (Advocates for
Children's Health Affected by Mercury Poisoning)