Robert Miller
Executive Director
National Fragile X Foundation

Some of you may have recently read an online commentary by nationally syndicated, columnist Dr. Manny Alvarez. Not only does “Dr. Manny,” as he goes by, seem to be a qualified and thoughtful medical practitioner, but he is also the parent of a child diagnosed with autism. Therefore, I take his opinions seriously.

“While Fragile X syndrome has similar symptoms to autism, it differs in that it has a very well described genetic underpinning.

The reason this is important is because medications for the treatment of autism symptoms need to be carefully studied and individualized to specific spectrum disorders. If not approached in the right way, we may end up with medications that are perhaps not indicated properly and abused down the line.”

I have written to Dr. Manny in the comments section of the article, and I will share the same thoughts here as well.

In the quote above, Dr. Manny appears to miss the point that Fragile X syndrome (FXS) is a portal into a better understanding of autism. The “genetic underpinning” of FXS that he refers to as an example of what’s different about FXS and autism is exactly the opposite: it is a clue to the likely genetic underpinning of much of autism. According to numerous and highly qualified medical professionals such as Dr. Randi Hagerman, Medical Director of the UC Davis M.I.N.D. Institute, FXS is an autism spectrum disorder, a point he seems to be confused about. (The CDC states it as, “Autism spectrum disorders (ASDs) also occur more frequently in people with FXS.”)

In his column, Dr. Manny expressed concern and caution about drugs currently in clinical trials for FXS and autism and, in particular, his concern that improvements may be nothing more that the result of sedation, not true behavioral and cognitive improvement.

 “The problem that I have with these drugs for the use in the autistic spectrum is that there are drugs with similar mechanisms of action – for example, activating the GaBA receptor – that are currently in use for anxiety.  One, which you may have heard of, is called Valium.

So the question is: Are we sedating these children and therefore seeing an improvement in their anxieties, or is there truly a mechanism that is decreasing their autism-like symptoms?”

While I’m no scientist, I want to reassure Dr. Manny that the scientists I know are filled with an abundance of caution and are deeply committed to helping develop new treatments that lead to better lives for those with FXS and for those with autism or ASDs. And, without exception, those scientists understand that it will be the combination of drugs, traditional interventions, and the loving care and support of their families (including Dads like Dr. Manny) that will lead to the biggest improvements.

We need people like Dr. Manny thinking and talking about FXS and autism. But we also need them to be accurate.