1 in 88ish

According to the media, 1 in 88 kids has autism, and everybody is freaking out. That's understandable. The idea that that many kids will grow up to be Rain Man is really something to worry about- to panic about.

What needs to be understood is that this number- 1 in 88- has been taken out of context and misunderstood. I read the CDC study to see whether it actually said what the media was reporting it said. It doesn't- not really. I have a master's degree in psychology and I'm an MSW student now. I know my way around a study, and I can tell what a study like the one the CDC did says, and more importantly- what it doesn't say.

Here's what it really says, more or less: based on school and medical records of 8 year old kids at 14 sites in the year 2008, we found that you could make an argument that 1 in 88 of the kids in this sample could meet the criteria for anything from severe, non-verbal, self -injurious autism to being a little weird or antisocial. That's it.

Here's what it doesn't say:

The samples that were studied by the CDC can't reliably be generalized to the country as a whole- the researchers say so outright. That means that there's some indication that the prevalence rate might be as high as 1 in 88, but there's no way to be sure based on these findings. In other words, this study doesn't mean that 1 in 88 American schoolkids have autism. It means that the number could theoretically be that high, or higher- but it could also be much, much lower. These numbers don't give us that answer. I think that's a crucial distinction.

Lay readers and writers often don't know that there are two kinds of prevalence:  point prevalence and lifetime prevalence. Point prevalence is the number of people who have a disease in a certain moment in time. The CDC's 1 in 88 number is a point prevalence number- it gives us the prevalence of the diagnosis in the areas they studied for the calendar year of 2008. That's it.

This is different from a lifetime prevalence rate. The lifetime prevalence rate is the number of people who will carry a diagnosis at some point in their life. The 1 in 88 number- a point prevalence number- is being discussed as though it were a lifetime prevalence number. It's true that the kids in the CDC study all showed signs of the disorder before the age of three. We might assume that most kids who meet criteria for the diagnosis at age three and still meet it at age eight are likely to meet the criteria for diagnosis for their whole lives- but that is an assumption. Do we know that this is the case?

We absolutely don't. The criteria for an Autism Spectrum Disorder are notoriously vague and it is not infrequent for a child who is diagnosed with Asperger's, or the catch-all PDD-NOS to have their diagnosis changed, removed, or supplemented with ADHD, borderline intellectual functioning, or a million other conditions. The diagnosis itself is fluid, so the only way to accurately assess the lifetime prevalence of the condition is a longitudinal study that follows a cohort of diagnosed and control children over a period of many years. Studies of this kind are underway, but a real lifetime prevalence rate for autism is elusive. It will be difficult to determine the real scale of autism as long as the vague, subjective diagnostic criteria change and get reinterpreted by professionals.

This is important: none of the kids in the CDC study were actually observed by the researchers. The records they reviewed and the children they purportedly describe may not be as similar as they appear. The diagnosis a kid carries and the services they receive are related. If a kid with problems seems like they might be autistic, if they are "autistic-like", they often need the autistic label to get the full range of services available. Practitioners, parents and teachers are all motivated to attach a diagnosis to a kid to make sure that the kid gets help. It's sad that need drives diagnosis, but it does. It's common enough that leading researchers like Fred Volkmar of Yale, among others, have wondered whether the need to access treatment and the consequent pressure to apply the autism label have inflated the prevalence of this disorder. The CDC study was based on records, and records, because of treatment needs, are routinely distorted.

1 in 88 is a scary number, but what makes it really intimidating is its relation to the older prevalence rates. Autism, we are told, is rising. Just 30 years ago the 1 in 88 number was 1 in 2,500. A change like that is more that just an increase- it is, in the words of Gerri Dawson, Autism Speaks Chief Science Officer- "an epidemic". A disease on the rise is unfortunate, and something to worry about. An epidemic is something to panic about. The word conjures up images of Polio in water fountains and food recalls. Its not just rising, it's almost catching. When they say that it effects "more kids than AIDS, diabetes, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy, or Down Syndrome combined", they imply that one way or another, autism is coming for you or someone you love. If I have a kid, will it be the one in 88?

 This tactic has its uses. The fear the statistic generates raises money. It puts autism into the national public health conversation better than saying: "the rate of autism could be as high as 1 in 88, but it might not." Both of those things are good. More research on autism is good, and that costs money. Making people aware of autism is important if the quality of life for people with autism is to improve. When Autism Speaks uses the rhetoric of epidemic, they are just doing their job. They're raising money and awareness. When Autism Speaks says the prevalence of autism is 1 in 88, they're not being dishonest- but what they're saying isn't entirely true either, and that's a problem.

Before my son was diagnosed, I was skeptical of the the autism "epidemic." It might have been a residual effect of the vaccination imbroglio. The rhetoric of the vaccination camp seemed shrill and paranoid, and my attitudes about them may have carried over into a dismissal of the puzzle ribbons on car bumpers and the "Light it Blue" campaign.  I'm sure that I was not alone in that, and if my son hadn't been diagnosed I would probably still feel a hint of annoyed skepticism about autism. Whenever an unpleasant message is repeated, there inevitably emerges a resentment of the information, and denial is the first response to things we resent. Soon, the epidemic will be an irritating message that people blow off as an exaggeration because it makes them uncomfortable. That's what I'd feel if my son were neurotypical.

Many people in the world of autism feel that the language of epidemic and disease is counter-productive, and I tend to agree. If we are supposed to accept people with autism, then likening the diagnosis to a blight seems like doublespeak. By touting findings like the CDC numbers as evidence of a problem, we run the risk of alienating the very people we are trying to help. What does it say about a cause when the rhetoric it uses to raise money hurts the people it raises money for?

In a way, my bellyaching about the inaccuracies in the discussion of the new CDC numbers is nitpicking. The goal of "Autism Acceptance" requires success in the campaign for "Autism Awareness". Showcasing the CDC numbers in a slightly misleading way will "raise awareness" and that is probably more good than bad, at least in the short term.

It's unclear whether the 1 in 88 number will be absorbed into the zeitgeist positively or negatively for my son, my family, and people like us. Like everything with autism, you just hope for the best.