Another autism study. Yawn.
his week, a study came out showing that women whose labor is induced and/or accelerated are more likely to have a child with autism, especially if the child is a boy.
I had my first labor accelerated, back in 2005. My son has autism. With my second child, I didn’t. She doesn’t.
Aha! Proof? A cause for autism? An answer? Most importantly, rationale to stop inducing/accelerating labor?
Nope, say the researchers. “The findings of this study must be balanced with the fact that there are clear benefits associated with induction and augmentation of labor,” notably reduced stillbirth, said Chad Grotegut, a study author and an assistant professor of obstetrics and gynecology at Duke.
In other words, it’s a risk-benefit tradeoff. Like just about everything in life, including whether to have kids in the first place (another topic recently in the news.) Stop the presses!
So as a parent of a child on the spectrum already, I don’t much care. On the contrary, I dispute the “significant interest” the authors claim in their abstract:
Importance One in 88 children in the United States is diagnosed as having autism spectrum disorder. Significant interest centers on understanding the environmental factors that may contribute to autism risk.
The study made me recall a chance meeting I had this summer with a doctor who wrote a book called “Autism Prevention, Care and Management.” He asked me how he could get his message out to other parents. I think I shocked him when I said, frankly, that I wasn’t interested in the cause of autism, or how to prevent it. This is my road. While it’s often bumpy, by no means do I consider it a dead end. And wishing myself off it (though I have been known to do so) is a waste of time and energy.
Nor do I want to isolate my child and family any further on our road. There’s strength in numbers. In terms of support and understanding among the neurotypical majority, insurance coverage and special education funding, it’s in my family’s best interest to have more kids diagnosed with an ASD.
Now, I am interested in the care and management. But as with the finding on labor that tiptoes up to a recommendation, then follows up with the “wait, but…” I’m not going to get the clear, objective, peer-reviewed, controlled, data-driven results I want.
Case in point: Gluten-free, casein free diets, probably the most commonly-used autism intervention that we’ve not yet tried with our son. I googled “gluten free casein free diet, peer reviewed, controlled studies.” Here are excerpts from the top two hits linked to direct sources:
No. 1, a 2009 paper published in Research of Autism Spectrum Disorders: “Critical analysis of each study’s methodological rigor and results reveal that the current corpus of research does not support the use of GFCF diets in the treatment of ASD.”
No. 2, a 2013 paper found in the National Library of Medicine Archives: “Although not wholly affirmative, the majority of published studies indicate statistically significant positive changes to symptom presentation following dietary intervention.”
That sounds (relatively) solid. And it is the more recent research. But then, the authors waffle (italics mine):
“Further debate on whether such dietary intervention should form part of best practice guidelines for autism spectrum conditions (ASCs)….is warranted.”
Sigh. More clinical CYA double-speak.
I know I’m not alone in my frustration. Patients with cancer, Alzheimer’s and MS, to name a few off the top of my head, also face conflict on whether cause vs.coping is the more important research focus. Intellectually, I know there’s truth when I’m told, ‘It’s not either, it’s both.”
But speaking again as a parent, as I often tell my kids, in the real world, you can’t have both. You don’t get ice cream and a cookie. You have to pick. From my position on the road that is autism, events that occurred almost eight years ago aren’t even in the rear view mirror anymore. My eyes are fixed forward, and I’m navigating my own way. I’d welcome a better map*, though, not the equivalent of a train wreck distraction.
– The letter T brought to you by Daily Drop Cap.
* Update, 8/23/13 – This study by Rutgers neuroscientist Elizabeth Torres provides the kind of direction I’m seeking. From the article: “many experts are making a mistake when they focus only on what’s malfunctioning in the brains of people with autism.” And “instructors should worry less about odd repetitive physical behaviors that are common in autism.”
In other words, look for strengths and don’t worry about stimming. Hurray!
Update, 9/2/13 – Here’s another post from Hopeful Parents that makes my point much more simply. “Autism has taught me that obsessing about causes [of bad things] and your role in those causes is toxic. Much better to spend your energy thinking about what helps and what heals.”