Foggyrock
Beta
"When autism is your mountain, you will never have to climb alone"
Feel free to browse around and get to know Foggyrock. However, you will need to login/register in order to fully participate

Library Categories > Global Issues > When Is An Epidemic an Epidemic? By John Gilmore

 
Library Item Name:

When Is An Epidemic an Epidemic? By John Gilmore 		   
Summary Statement:

Thought provoking questions and answers about what is really going on and what and who we all need to be watching...
Content:

SPECTRUM
When is an epidemic an epidemic?
By John Gilmore

That’s a question about autism no one seems to want to answer. Some would say that whenever anyone near and dear to you becomes sick, that’s an epidemic. If you are reading this column you probably have an autism epidemic of at least one in your home. Epidemiologists say that an “epidemic” is an increase in the incidence of a disease. And we have certainly seen a huge increase in the incidence of autism among American children, from 1 or 2 per 10,000 20 years go to more than 1 in 150 today according to the Centers for Disease Control and Prevention (CDC). Despite these staggering increases nobody with power in the twilight world of autism will use the phrase “autism epidemic.”

Prominent autism organizations won’t say it, the Food and Drug Administration won’t say it, the herd of candidates for President haven’t said it, and the last group in the world to say those dreaded, but obvious words, is the CDC, the extremely well-funded federal agency that is supposed to detect, stop and rollback epidemics.
Epidemics are serious. They are frightening. Epidemics demand action from government, public health officials, physicians and leading medical institutions. Epidemics are expensive. What’s most frightening about epidemics, at least for those in comfortable government bureaucracies, is that it requires those in power to act responsibly and produce results.

Public health authorities can certainly generate a lot of activity for issues they think are important. The CDC has been banging the drum about avian flu and spending billions even though not a single bird, much less a human being, has died of the disease on the North American continent.

What do we get from the authorities responsible for fighting the autism epidemic? Red herrings, untested guesses, rationalizations, speculation—in short: excuses. Anything but the serious, difficult and expensive work that would give us hard information essential for intelligent decisions and appropriate investment in research into the causes and potential cures for of autism. The state of research into the causes of autism is so dismal that we can’t even say with confidence that we know it isn’t a communicable disease. The powers-that-be say this, but they have no proof.


In past few months the intellectual gyrations needed to deny the epidemic would make Orwell proud. The New York Times recently quoted Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine, who said, “It appears that the rates are unchanged over the past 20 years or so, but it is important to track these numbers.”

There are lots of excuses used to avoid saying we are in the middle of a public health disaster. A frequently used excuse is to attribute the rise to better case finding, meaning we are better now than in the past at finding and diagnosing people with autism. While this is probably true for people with Asperger’s and milder forms of this disorder, people with full-blown autism comprise about half of all the cases. So better case finding, in short, means that until recently nobody noticed the 8-year-old who couldn’t talk banging his head and flapping his hands in the corner.


It is also frequently suggested that people with autism now would have been diagnosed with mental retardation in the past, and the overall decreasing number of people with a mental retardation diagnosis is cited as evidence. In the State of New York the number of students with a diagnosis of mental retardation has indeed decreased during the past ten years by about 3,000. At the same time, however, the number of students with diagnoses of learning disabilities, speech and language disorders and autism has exploded. Autism cases alone have increased by 13,000. So in New York, at least, diagnostic substitution can’t explain the increase in autism. Large and significant studies from the State of California, John Hopkins and the University of Minnesota came to similar conclusions.

The third big excuse is that changes in the checklists used to diagnose autism make comparison of the numbers now and in the past impossible because we define autism differently now. They say we are comparing pears to mangos. The argument is also made that the range of symptoms that fall under the autism umbrella is wider than in the past.

It is true that the diagnostic criteria used in the United States were changed several times in the 70s and 80s, but they have been unchanged since 1994 when the Diagnostic and Statistical Manual IV-Revised, the definitive text used for diagnosing autism, was issued by the American Psychiatric Association (APA). And the DSM-IVR defined autism more narrowly than the preceding edition. Any studies done in the past 13 years would have used the DSM-IVR criteria and during that period we have seen an explosion in the number of people with autism.

The next edition of the DSM is slated for 2010. Any changes to the diagnostic criteria for autism would make sound epidemiology all that more difficult. The autism community needs to pay close attention to what the APA does and make sure that no changes are made to the diagnostic criteria for autism, or we could be waiting for yet another 20 years while the bureaucrats dither and debate.

We can’t wait for the CDC to measure the obvious, but without solid epidemiology showing that the cases have sky rocketed we will not be able to get the attention and investment needed to fight the epidemic. As usual, parents of people with autism will need to make this happen.

Conducting a full census of adults will yield crucial information to determine the extent of the epidemic. If the count shows that there are indeed far more 8-year-olds with autism than 40-year-olds that would indicate looking for environmental rather than a genetic cause, and could lead to a much more efficient use of available research funds.

Autism United, a coalition of autism organizations and service providers, has launched a private initiative on Long Island, N.Y., to count every individual appropriately diagnosed with autism.

Studies like these will bypass the roadblocks at the CDC and provide the solid information we need. It is unfortunate that we have to take on this additional responsibility, but when faced with bureaucracies resolutely determined not to do their jobs and deal with reality we have no choice.
Submission Date:

12/13/2007by: Angela
Current rating:


Our Supporters