A study is coming out today that will report that the prevalence of Autism Spectrum Disorders in school-aged children has risen to 1 in 50.
Or...has it?
That number seems scary. It's definitely going to sell papers, grab headlines, and cause people to watch the news a little longer than to just watch the weather forecast. The engineer in me asks this question - can I trust it? Can I allow this report to frighten me? Can I really believe the media?
This is why I firmly believe that special needs parents need to be amateur statisticians. Think about it - we deal with standardized data, percentiles, and studies with convoluted results daily. We have to be able to sort through it all, pick out what is critical, and discard the rest.
So, where does this 1 in 50 study fall into all of this?
When you evaluate a study for credibility, you need to look at two things - is the test method good, and what do the conclusions actually represent. When looking at this new 1 in 50 study, the first concern I have is over the test method. Unlike other CDC studies where information is gathered from an outside source, this study involves self-reporting - or calling and asking families how many of their children are autistic. This introduces parental bias into the game.
Let's face it, everyone lies. (Thanks, Dr. House!) It's not always a conscious lie that we tell, but our own bias and misguided thoughts that lead us astray. If someone were to ask me if I have an autistic child, I could say yes with all confidence. He's been tested by both a developmental pediatrician - the gold standard, if you will - and the school system and BOTH have confirmed it. Thus, I'm basing my information off of a 3rd party.
However, what if I was in denial? What if someone asked me if my child was autistic, but I wasn't ready to admit it? What might I say? I might say that my child wasn't autistic, because I wasn't ready to admit it.
Or, conversely, what if I thought my child was autistic, but I had yet to obtain a diagnosis? What might that parent do? When asked if they had an autistic child, that parent might very well say "Yes".
The problem with self-reporting like this is that there is no one to fact-check on the tail end. No one follows up with these families to see if they actually obtained a diagnosis for their child or not. Certainly, there would be some "No"s that would be incorrect (parents in denial), but there would also be some "Yes"s that would be wrong as well (parents who are simply incorrect in thinking their children have autism). Would those incorrect responses on either side balance out the other? Since we haven't accurate diagnosis data on any of the respondents, we can't ever truly know.
Need more proof about the fallacies of self-reporting? I'll give you an example from when Jack was diagnosed. Here I was thinking that I was seeing the worst in my son. I thought that I was surely seeing things no one else was seeing. So, when I took a parent assessment that was designed to gauge Jack's development in many different areas, I was shocked to find out that my scores placed him a full 7 months ahead of what objective testing did; he was functioning at the level of a 7-month old, but I was seeing him at the level of a 14-month old. My own Mommy-bias was giving my kid a "boost" in his scores. Subsequent testing confirmed that my own assessments were generous and off the mark (he didn't reach that level until last year).
I can hear what your'e saying..."But RM, you always preach that parents know best! That we know our own children, but now you're saying we're biased and can't be trusted?" Well, yes and no. Parents do typically know something is wrong. We know that our children are not developing in a typical manner. What we have a harder time doing - especially early on - is pinpointing what is going on and where our children truly function. That acuity in judgement comes with time and experience. That's the reason why I knew that my son wasn't moving like other children, but I never dreamed he needed physical therapy (I was SHOCKED when I got his first set of PT evaluations).
You see, parents are emotional creatures. When it comes to self-reporting - particularly for our children - our responses can't always be trusted when looking for objective, unbiased data.
Then we have to look at how this information is presented. The lay-person is not going to actually open a link to a study presented to them so that they can scrutinize the testing method and draw their own conclusions. Rather, we will look at the headline, skim the article (written by journalists, not scientists, in all likelihood), and we will take that to be truth. So when we see a headline that says this:
"Autism Rates Skyrocket to 1 in 50"
we believe it. We trust the media to not lead us astray, but they do. That's why the studies the media latches on to are studies about causation (living near interstates causes autism and other such garbage) or about cures (20% of children lose their diagnosis, which we all know is absolutely not true). Believe me, I know from being syndicated that people who carry your work can - and do - alter titles of your pieces without your consent (it's part of what you agree to allow). After all, who is going to bother to read something titled:
"The Parents of 1 in 50 Children Report Their Kids to Be on the Autism Spectrum"
More accurate, yes. Attention grabbing? Not exactly. That's why you won't hear it.
Now, the reality is that the 1 in 50 number is probably not accurate, but we also don't know to which end the pendulum would really swing. That number only reports on children of a certain age, thus taking a measure of a younger group - like Jack's age - might yield a larger number. Or not. Many kids Jack's age who are on the spectrum haven't been diagnosed yet. It's a subjective diagnosis. We may never know with any certainty the true prevalence of autism amongst American children, but we can get some estimates.
What is important is for all of us - parents, teachers, professionals, and laypersons alike - is that we evaluate each study critically. Don't fall victim to hype, sensationalism, or panic. Numbers don't always reflect the full story.