The Crisis in FASD Diagnoses: A Call to Action

In the US, we absolutely have a dearth of those qualified to diagnose Fetal Alcohol Spectrum Disorders. There are something like nine diagnostic centers across the country. Just doing some quick math, if we consider that 5% of the population has an FASD, and that consideration is on the LOW end, that means that there are over 17 million people with an FASD currently living in the US. If they all wanted to be diagnosed, that would mean that each center would see, on average, nearly 2 million people. So, yeah, there’s a dearth of diagnoses.

Does that seem odd to you? To me, it’s completely unacceptable. It’s medical malpractice. It’s incompetence at its most basic level. It’s criminal neglect.

But we’ve made do. I’ve actually heard, from a professional, that an accurate diagnosis isn’t as important as ANY diagnosis. Why bother, the thought goes, when not all states recognize FASDs as a disability warranting benefits. Instead, get any diagnosis – ADHD, autism, or anything will do – receive benefits such as health care and Social Security Disability, and do your best as either the person with the disorder or the caregiver.

So, treat the cough with cough medicine when you really have pneumonia. You’ll feel better, but you won’t get to the heart of the problem and, therefore, you won’t mitigate the condition over the long haul.

When we don’t recognize FASDs as an actual diagnosis, we get medications that don’t treat the individual. Those medications may be helpful in some respects, but since no one is identifying the disordered brain of the person with the FASD, the medications can cause harm, too. That is, if you only have a hammer, everything looks like a nail. If you only think of prescribing Ritalin, everything looks like ADHD.

If we know that the brain that has been damaged due to prenatal alcohol exposure is the problem, we know how to mitigate the effects. We can’t cure FASDs, but we can use strategies to positively impact those affected. But we have to know.

And that’s where we’re falling down. How many people do you know who have a diagnosis of an FASD? Is it anywhere near the number of people you know who have a diagnosis of cancer…because it should be close! Approximately 18 million people in the US have had cancer.

How about diabetes? That’s a higher number…about 38 million in the US. But that means that for every two people you know with diabetes, you should know one with an FASD. How are those odds stacking up? I can answer that: they aren’t. I just scrolled through my cell phone, ending at last names beginning with H, and I know at least 10 people with cancer.

I work in the field; I’m an expert on FASDs, and, absent those who I know from my work, I know absolutely 0 – ZERO – people with an FASD diagnosis.

Does that seem odd to you? To me, it’s completely unacceptable. It’s medical malpractice. It’s incompetence at its most basic level. It’s criminal neglect.

We have basically written off nearly all the 17 million individuals in the United States who have been prenatally exposed to alcohol in a way that has caused a diagnosable disorder. We have basically indicated that what’s wrong with them doesn’t matter.

Is it because we really don’t care?

Are we too worried about stigmatizing the mother who drank while pregnant?

Do we only want to diagnosis disorders that have reliable medications to treat them?

Whatever the rationale, it’s unconscionable.

We have got to do better.