by Julie Obradovic
September 13, 1952.
That's the day Polio was declared an epidemic in Chicago. According to the front page of the Chicago Sun-Times at www.encyclopedia.chicagohistory.org the city declared it so after it surpassed the "critical level classification" of 720 cases by 9 cases, "at which the disease is classified as having assumed epidemic proportions on the basis of 20 infections for each 100,000 of the city's 3,600,000 population."
I was prompted to dig this up after a comment made by Dr. Tom Insel of the NIH. He claimed in response to the question as to why Autism has not yet been declared epidemic, that quite simply no one has bothered to look at the incidence rates to figure it out. That stunned me. Logic dictates determining if Autism is epidemic or not will best direct research funds, as genetic disorders and diseases cannot be so. Figuring this out sooner than later is not only fiscally responsible, it is morally responsible.
I then wondered what other well-known diseases were called epidemics, when and why they were done so with more urgency, and moreover, what their incidence rates were and how they were established. Certainly if we can do it for Polio, we can do it for Autism, right?
Before I made that call, however, I needed to get some information straight. Admittedly, I was unclear about the difference between incidence and prevalence rates, as well as what the formal definition of an epidemic is.
I now know that prevalence rates reference how much of the disease is occurring among the population as a whole, versus the incidence rate which looks specifically at birth cohorts to track increases or decreases. In essence, we know that 1 in 150 people now have Autism, but not how many 3 year olds per se across the country do. (This emphasizes the importance of the California data which does tracks incidence of Autism in that state.)
I found out through a quick Wikipedia search, "an epidemic is a classificaion of a disease that appears as new cases in a given human population, during a given period, at a rate that substantially exceeds what is expected based on recent experience (the number of new cases in the population during a specified period of time is called the incidence rate)."
Moreover, "Defining an epidemic can be subjective, depending in part on what is expected. An epidemic may be restricted to one locale (an outbreak), more general (an epidemic), or even global (pandemic). Because it is based on what is expected or thought normal, a few cases of a very rare disease like rabies may be classified as an epidemic, while many cases of a common disease (like the common cold) would not."
And finally, "Common diseases that occur at a constant but relatively high rate in the population are said to be endemic. An example of an endemic disease is malaria in some parts of Africa in which a large portion of the population is expected to get malaria at some point in their lifetimes."
Okay, back up.
First, epidemics are declared for diseases only. Is Autism even considered that yet? I know Dr. Jepson's book Changing the Course of Autism attempts to change the paradigm, but has it? And if not, how can we expect to qualify for epidemic status without first establishing ourselves within that classification?
Second, defining an epidemic is "subjective"? Declaring one is essentially a matter of opinion? Whose, the CDC's? That's funny. And that's not what the information on Polio stated. They had an exact number to reach within a very specific parameter.
Third, according to Dr. Insel, we don't have the incidence rates across the country to decide if Autism is indeed epidemic. But according to what I'm reading, that's only part of the problem.
We don't have the expectancy rate either.
The incidence rate means nothing without first establishing the expectancy rate to compare it. And to my knowledge, correct me if I'm wrong, I have never heard anyone clearly establish what the expected rate of Autism is in the U.S.
Can we logically assume then that our medical authorities believe the current rates of Autism are expected?
I would argue the continued mantra of better diagnosis makes it safe to do so. In fact, even in England where someone actually did study incidence rates over time, that was exactly what they concluded: No epidemic. Better diagnosis.
But if that is true, then that means that as the prevalence rate of Autism continues to rise, we submit to the idea that year after year after year the amount of people with Autism has remained constant throughout the world, regardless of time, geography, or ethnicity...and that year after year after year, we continue to misdiagnosis it or flat out manage to ignore it. Essentially, no matter what the prevalence rate becomes, it always was that way, we just didn't realize it. (And yet, in 1943, it was so bizarre, so rare, and so unheard of, that one of the leading psychiatrists in the world didn't know what it was, had never seen it in his lifetime prior, and had to make up a name for it.)
I'm preaching to the choir here, I know. My point is this:
In 2007, our medical authorities still don't know if Autism is a disease.
They still don't know how much Autism is expected in our society at any given time.
They still don't know if we actually have a real increase in incidence or not, and they have no idea what it's due to if there is. And worse, they apparently have no plans to find out any of these answers any time soon.
And yet, 55 years ago, they knew to the EXACT number on an EXACT day in one city of the country that it took to qualify a life-altering disease as an epidemic. A disease, mind-you, that was affecting at best every 1 in 5000 people.
In the time it took me to write this, 3 more children have been diagnosed with Autism.
I beg our collective Autism communities to prioritize our efforts and hold our medical authorities responsible for this atrocious display of ignorance.
Autism in now not only a national shame, it is truly a medical disgrace.
Julie Obradovic is a High School Spanish teacher in the suburbs of Chicago where she lives with her husband and 3 beautiful children, one of whom is recovered from Autism. She is a member of the NAA, a Rescue Angel, and founder of the Southwest Suburban Biomedical Support Group. Last year she threw the First Annual Evening for ACE, a benefit that raised several thousand dollars for the Autism Center for Enlightenment, Dr. Anju Usman's not-for-profit organization.