January 15, 2018 at 4:09 p.m.
Autism numbers spike: The latest call to action
Autism numbers spike: The latest call to action
Action they must take on two separate fronts.
First, our nation needs to continue its efforts to find the cause or causes of autism, to help us better develop successful treatments and preventive measures. While a growing body of evidence points to environmental triggers, adequate resources must be provided to non-ideological and truly independent scientists so they can pursue their research wherever it takes them.
Second, the nation must come to terms with the educational, social, and medical needs of those who already have autism, and with the needs of their families. Frankly, the resources provided to special-needs student populations these days is woefully inadequate for what is already a massive population.
As the latest NCHS survey shows, the numbers continue to tick upward. Lost productivity, lost lives, lost national wealth - each and every day more and more people are being lost to this tragic epidemic, and ultimately all of us are going to pay the price.
The thing is, when it comes to education, we pretty much know what works and what does not. We know what is effective and what is not. True, the science is always evolving, and there are always new revelations, but the world has made great strides in educating and socializing children with autism.
What is lagging is the resources to do what needs to be done effectively. If ever there was a need for government spending, this is it.
A few words about the latest government survey are in order.
Most important, while the number of children aged 3-17 who have received a diagnosis of autism according to their parents rose from 2.24 percent in 2014 to 2.76 percent in 2016, the government says that growth is not statistically significant.
And that has led the notoriously lazy, sloppy, and dishonest mainstream media to report that what the numbers really show is a leveling off of the autism rate, a steadying of the numbers.
Here's how UPI put it in its headline about the survey: "NIH: Autism rates in U.S. appear to be stabilizing."
Well, nothing could be further from the truth. That's not what the NIH said, and the mainstream media is once again wrong.
What the government said was that the increase is not statistically significant. That's academic terminology, and it has nothing to do with whether the increase was large or significant in real-world terms. Indeed, when those percentages are translated, that's an increase from 1-in-45 children to 1-in-36 and no one is going to argue that's not a significant increase.
What it does mean is the increase falls within a range that makes it more likely the outcome was the result of chance. It doesn't tell us anything about the importance of the outcome.
In this instance, all that labeling the increase as statistically insignificant means is that, while the increase is large, it might be due to chance. Of course, it could also be real.
It doesn't tell us anything about the size of the increase - that certainly wasn't stable - and it doesn't mean a different sample will produce a different result.
A great point about this was made about a decade ago by Andrew Gelman, a professor in the Department of Statistics and Department of Political Science at Columbia University, and Hal Stern, a professor in the Department of Statistics at the University of California, Irvine, in their wonderfully titled article "The Difference Between 'Significant' and 'Not Significant' is not itself Statistically Significant."
In their discussion, Gelman and Stern touch on the growing awareness that "statistical significance is not the same as practical importance," and "that dichotomization into significant and nonsignificant results encourages the dismissal of observed differences in favor of the usually less interesting null hypothesis of no difference, and that any particular threshold for declaring significance is arbitrary."
Indeed, the authors wrote, many of the pitfalls of relying on declarations of statistical significance are well known.
"For example, by now practically all introductory texts point out that statistical significance does not equal practical importance," they wrote. "If the estimated effect of a drug is to decrease blood pressure by 0.10 with a standard error of 0.03, this would be statistically significant but probably not important in practice. Conversely, an estimated effect of 10 with a standard error of 10 would not be statistically significant, but it has the possibility of being important in practice."
And so equally could the rise in autism rates by 23 percent over three years be important. Especially in public health matters, such differences cannot be dismissed or trivialized, but, as the authors observe, such focus on statistical significance "encourages practitioners to ignore potentially important observed differences."
Such as the media has done with very potentially important observed difference in the autism rate of 2014 and that of 2016. So with, one, the over-focus on statistical significance in the first place, and, two, the media's mistranslation of statistical insignificance into "stabilizing numbers," the important news in the survey was not only completely buried, it was falsified to boot.
There's also the difference between the 1-in-36 number in the parents' survey and the 1-in-68 official CDC estimate, in which the latter did show a stabilized prevalence rate in its 2014 and 2016 reports.
As we report today, there are limitations in both data constructions, but, that said, there are some very good reasons to believe that the parental survey is the more accurate one.
For one thing, as Autism Speaks points out, the official CDC numbers are based on an analysis of medical and school records of children and can miss children who have not received autism-related medical or special education services.
The CDC also acknowledges that the parents' survey sample is more broadly based than the official sample, which is carried out at 11 monitoring sites selected competitively and are not necessarily representative of the national population or even of the population in the state where the site is located.
Not only that, but, the CDC admits, its inability to review education records at some sites might have led to an underestimate of ASD prevalence at those sites. All that is nicely tucked away in the fine print.
To be sure, parents may overreport or mislabel some ASD diagnoses, especially with all the media attention autism receives, but, on balance, the reported reluctance of parents to label their child as having autism because of the stigma attached to the disorders and the built-in sampling flaws of the CDC estimate likely make the parents' survey a more accurate barometer.
At the end of the day, though, while the latest news points to an increasing crisis, any of these numbers should be a sufficient wake-up call for our elected leaders. No matter which number you embrace, all of them - whether it is 1 in 36, or 1 in 45, or 1 in 68 - point to a crisis that is epidemic in proportion.
Consider that when a terrified and almost panicked nation was in the clutches of the polio epidemic, its numbers were nowhere near the autism numbers of today. In 1952, at the height of the polio epidemic, there were a total number of 312,571 cases of polio documented among the birth to 17 population, out of 50.5 million children of that age.
Thus only about six-tenths of one percent of the youth population had polio compared to 2.76 percent today who have autism. If that comparison doesn't wake our elected officials up, nothing will.
Even a stabilized epidemic would be an ongoing tragedy, and it is especially so for those already in this world and living with these disorders. It is a moral imperative not only to try and truly stabilize this growing crisis - starting by paying attention to what parents across the country are telling us - but to work and invest every possible resource to make the lives of those millions with autism as happy, as productive, and as decent as we can.
That is the mission before us, and, as the new autism numbers press upon us, the time is now.
Comments:
You must login to comment.