On Jul 11, 2011, Dr, Thomas Insel testified before the House Health Subcommittee on the importance of refunding the Combating Autism Act and once again turning autism over to the Interagency Autism Coordinating Committee. (See my recent story about Thomas Insel’s testimony Age of Autism HERE )
Recently a story also appeared in the Gulf Times, Qatar’s only English language newspaper, titled, The real reasons for the autism 'epidemic.’
It was written by Allen Frances, MD. Frances was chair of the DSM-IV Task Force and he’s with the department of psychiatry at Duke University School of Medicine in Durham, NC.
DSM stands for the Diagnostic and Statistical Manual of Mental Disorders, and while many of us wonder why our children’s neurological problem, namely autism, is in a manual about mental illness, that’s where the criteria for diagnosing autism is found.
Frances was in charge of the DSM 4 that came out in 1994. This is important because that’s when the diagnosis of Asperger’s Syndrome was officially added as a form of autism. In his Qatar piece, Frances went into great detail about why he’s not worried about all the children everywhere with autism. There is no epidemic. We’ve just expanded the definition of autism so much that many more people now qualify. He’s convinced that adding Asperger’s in 1994 is the reason the current autism rate is one in 110 and he’s sure that when the DSM 5 comes out in May 2013, the autism rate will soar even higher—because they’re going to drop Asperger’s as a separate category. If that really doesn’t make sense to you, I’m sure you’re not alone. All that’s clear to me is that if they keep playing with the definition of autism, the term itself will lose all meaning. The spectrum will include so many atypical behaviors that on a bad day, anyone could be labeled “autistic.”
Frances wrote, “Not long ago, autism was among the rarest of disorders, afflicting only one child in every 2,000-5,000. This changed dramatically with the publication in 1994 of DSM IV (the manual of psychiatric diagnosis widely used around the world). Soon, rates exploded to about 1 per 100.”
All the autism makes perfect sense to Frances but the epidemic rate has caused parents to be scared. “The natural reaction to any plague is panic. Parents are now fearful that every delay in speech or socialisation presages autism. Childless couples decide to avoid having kids. Parents with autistic children are desolate and desperate to determine its cause.”
And unfortunately, desperate parents have been convinced that vaccinations cause autism.
“The British physician Andrew Wakefield's vaccine theory became wildly popular among parents, many of whom began to withhold vaccination (thus subjecting their own and other children to the risk of entirely preventable, and sometimes serious, illnesses).
“Vaccination seemed a plausible cause because of the fortuitous correlation between getting shots and the onset of symptoms. Wakefield's work has now been thoroughly discredited as incorrect and dishonest science. But fear of autism is so great, and the reactions to it so irrational, that in some circles Wakefield continues to be revered as a false prophet.”
Only those with severe symptoms used to be called autistic, but that’s all changed.
“Before DSM IV, autism was among the most narrowly and clearly defined of disorders. Symptoms had to begin before age three and comprised a striking and unmistakable combination of severe language deficits, inability to form social relationships, and a preoccupation with a very narrow set of stereotyped behaviors.”
“In preparing DSM IV, we decided to add a new category describing a milder (and therefore much more difficult to define and distinguish) form of autism, called Asperger's Disorder. This seemed necessary because some (still quite rare) children presented with more or less normal language development, but with grave social and behavioral difficulties. We knew that Asperger's would likely triple the rate of autistic disorders to about 1 per 500-1,000, but this doesn't explain the new rate of 1 per 38.” (The one in 38 is a reference to the rate recently found in S. Korea.)
So how does Frances dismiss so many children having autism? Easy, it’s getting to be more and more popular to have autism.
“The most likely cause of the autism epidemic is that autism has become fashionable - a popular fad diagnosis. Once rare and unmistakable, the term is now used loosely to describe people who do not really satisfy the narrow criteria intended for it by DSM IV.
“Autism now casts a wide net, catching much milder problems that previously went undiagnosed altogether or were given other labels. Autism is no longer seen as an extremely disabling condition, and many creative and normally eccentric people have discovered their inner autistic self.
“This dramatic swing from under- to overdiagnosis has been fuelled by widespread publicity, Internet support and advocacy groups, and the fact that expensive school services are provided only for those who have received the diagnosis. The Korean study, for example, was financed by an autism advocacy group, which could barely contain its enthusiasm at the high rates that were reported.”
So we’ve gone from under-diagnosing to over-diagnosing?
Is Frances worried that if the Centers for Disease Control and Prevention ever gets around to updating the autism numbers the rate may even be higher? Not really.
“It is entirely plausible that 3% of the population may have some smidgen of autism, but it is entirely implausible that so many would have symptoms severe enough to qualify as an autistic disorder. Reported rates should be regarded as an upper limit, not as a true reflection of the rate of actual mental disorder.”
Despite the fact that the recent NIH funded twin study showed that environmental factors are more important than genetics in determining why a child develops autism, Frances isn’t buying it.
“Perhaps, then, an environmental toxin is causing an epidemic outbreak of autism. This has been the most popular theory, but it, too, is a small factor, at best. There has been no sudden environmental change since 1994 to account for an explosion in rates. This doesn't entirely disprove an environmental vector, but it does make the odds quite remote - especially since there is a far more plausible explanation.”
“Human nature, neurological illness, and psychiatric disorder all change very slowly, if at all. Environmental toxins do not usually just pop out of nowhere to make a condition 100 times more common than it was less than 20 years before.”
These outrageous remarks are meant for people he hopes are willing to accept that a well-credentialed expert must know what he’s talking about and that they can trust him to be telling them the truth. And he’s betting that most people out there don’t’ know that the number of vaccines our children receive more than tripled after 1983.
I have a hard times thinking most Americans still believe the worn-out claim of better diagnosing, expanded spectrum. What I see at work here is a well-orchestrated effort to make autism go away and with it the controversy over vaccines. If autism really hasn’t increased, then the ever-expanding vaccines schedule couldn’t be a factor.
That might work, except we’re getting mixed messages from officials.
BACK TO THOMAS INSEL
Insel has steadfastly talked about the ever-increasing autism numbers. Of course he does this in Congressional subcommittee testimony and in speeches at MIT and at NIH, not at press conferences with a large national audience. Still, Insel spouts claims totally different from Frances’s. He’s not happily agreeing that we’re just calling a lot of fringe conditions autism because it’s a “fad diagnosis.”
Insel has been quoted saying things like this:
"I think that most people that have been in this field, as I have for more than two decades, would say it's not simply changing diagnosis, not simply greater awareness, not simply ascertainment that's better, but that there is a true increase, as there is in asthma, type I diabetes, food allergies."
In 2009, Insel testified before Senate Appropriations Subcommittee chaired by U.S. Senator Tom Harkin. There he said,
"We have a whole wave of children with autism who'll soon be adults with autism,"
And in 2010, Insel gave a talk at NIH and asked, “How will we prepare the nation for a million people who may need significant amounts of services?”
He further said, "We need to figure out how this gets paid for and who provides the care,”
Also in 2010, Insel talked about autism at MIT. He said things like:
"In the 1980s,...I remember having to look far and wide to actually find a child with autism."
"I'd never seen any children with autism through all of my training."
"I didn't actually know anyone that I trained with who'd actually seen a child with autism."
Insel said we don't know what's driving this. We know it's not because of people who were labeled something else. He said it's not diagnostic substitution.
"I said before this isn't just genetics... There have to be environmental factors."
"We have barely been able to scratch the surface."
"There are something like 80,000 potential toxicants."
Notice how the two supposed experts contradict each other. I guess when it comes to autism, official sounding statements don’t have to make sense. No one is demanding that the medical community tell us anything for sure or that there should be some sort of consensus of belief. The only thing mainstream medicine and health officials know for sure about autism is that vaccines don’t cause it. Beyond that, as Allen Frances showed us, no one agrees on anything.
The scariest thing about Frances’s story is that he’s got a prominent position when it comes to autism. As the chairman of the group that worked on the last definition of autism, he has a lot of credibility. He must know what he’s talking about.
His claims fly in the face of reason and he’s muddying the water. He’s continuing the idea that autism is just a mysterious disorder--we don’t know anything for sure.
So why are so many parents worried about what will happen to their autistic children. If Frances is right and autism has always been around, then adults with autism will go where adults with autism have always gone. There is no crisis. The IACC can just disband. There’s no need for a special committee.
There seems to be a well-orchestrated effort to make autism go away. What Frances is skillfully doing here is distracting us. He’s redefining autism as something mild and acceptable. The only way his argument flies is if we forget about the kids with severe autism. We have to ignore the ones who are in need of constant care. They’re in diapers as teenagers. They don’t talk. They scream and bang their heads. They get away from parents and are found dead in a river or lake. They’ve got severe health problems like bowel disease and seizure disorders. They’re the ones we never see in TV news coverage about autism awareness.
Frances has absolutely no concern about where all these disabled kids will end up. Most noticeably, he can’t show us adults with the symptoms of classic autism that we see in so many of our children. I can go to local special ed rooms in area schools and find the hand-flapping, spinning, nonverbal kids. I can’t go to area nursing homes and see 70 and 80 year olds like this. And no one holds Allen Frances accountable for his ridiculous claims.
Furthermore, Frances totally ignores the thousands of children everywhere who were born healthy and were developing normally until they received routine vaccinations. How does he explain regressive autism? Simple, he doesn’t.
The clock is ticking on Allen Frances and his idiocy. He can pretend that the autism epidemic isn’t real, but he can’t make these children go away. They’re getting older and they’re going to bankrupt social services. When autism begins to cost us more and more money and when there is simply no place for all these young adults to go, we’ll be desperate for answers. We’ll understand that there have never been disabled adults on any scale like the autism epidemic has produced. We’ll have to stop the pretense that somehow we can explain away a generation of disabled children who’ve never been here before.
Frances tried hard to downplay autism. Insel talked a lot about the impact autism will have on us but he’s cautious about being too alarming. Meanwhile, the media says little of importance about autism. They dutifully talk about it during April Awareness Month. They occasionally mention a new study about the genetics of autism. They regularly remind us that studies show no link between vaccines and autism. Mostly they don’t sound worried about autism.
If the new updated rate goes from one in 110 to one in 70 or one in 60, we’ll still get the caveat that this doesn’t really mean more kids have autism. I’m sure we’ll have more lots of people like Frances downplaying the numbers.
We’ll finally stop listening to that mantra when we start to feel the cost of caring for the generation of autistic adults who will be aging out of school. I can imagine editorials demanding to know why no one warned us this disaster was coming. How come doctors like Allen Frances told us it wasn’t really happening? How come the CDC never called autism a crisis, let alone an epidemic? Why didn’t anyone in authority care about the suffering of hundreds of thousands of disabled children?
I can’t wait for the answers.
I really like what an autism dad I know wants to put on a bumper sticker….
"I pay a fortune for my child with autism. You will pay a fortune when he is an adult. Still think autism is someone else's problem?"
Update: See: Fueling the Fire: Autism as a "Fashionable" Disorder (HERE) by Lisa Jo Rudy. She also focused on Frances’s claim that an autism diagnosis is just in vogue right now.
Anne Dachel is Media Editor of Age of Autism.