Parents of spectrum kids fit into three rough categories:
- Haven’t heard of biomedical recovery / think biomedical recovery is quackery. These parents may rely on behavioral therapies, sleep assistance, or pharmaceuticals to cope with ASD, but they don’t make special efforts regarding diet or medical interventions.
- Are doing some biomedical work. These parents buy into those limited biomedical processes that “studies have shown” to help, such as the GFCF diet or oxytocin hormone, but they don’t do the whole DAN! protocol or anything else considered radical.
- Have dived headlong into recovery. Obviously, I fit into this category. Let’s call me, and others like me, the “don’t care if it’s been proven, as long as it’s not going to hurt” crowd.
I’ve tried to emphasize in this blog that, although Adrian and I are in Category No. 3, I’m not anti-Category No. 1 or -Category No. 2. To the contrary, I know that we’re all trying to do what’s right for our kids. I am yet to meet the parent who says, “I don’t think biomedical recovery works, but I’ve decided to put my family through all that the process entails, just for kicks,” or, “I think that biomedical recovery works, but I’d rather not recover my son.” Parents love their children and come to their own decisions on issues as sensitive as treating autism. I—especially given my experience with Martin’s birth, when my wishes were not respected—honestly, wholeheartedly, and unreservedly respect those decisions.
As for me and Adrian, we skipped Category No. 2. We jumped from Category No. 1 straight to Category No. 3, and we did so within less than one week. Over a series of three posts (and maybe a postscript), each titled “The A-ha Moment,” I’m going to describe what prompted such a rapid transformation.
It was early September 2010, thirteen months ago, when Adrian and I first suspected that Martin’s development might be not only slow, but beyond the normal range of variance one expects in toddlers. In October, our friend, an EI professional upstate, evaluated Martin and said, informally and unofficially, that his condition looked like autism. By November, New York State (which does not use the “autism” epithet on young children) had labeled Martin “PDD” and accepted him into EI. (In spring 2011, the Big Imposing Hospital’s pediatric neurodevelopment department confirmed what was clear to everyone else and gave the official diagnosis of autism spectrum disorder.)
From October 2010 until February 2011, Adrian and I were Category No. 1, to the side of “haven’t heard of biomedical recovery” more than “think biomedical recovery is quackery.” I think I knew vaguely that some controversy existed over the actress Jenny McCarthy and whether her son had recovery from autism, or whether he’d never had it in the first place. (I could not then, and still cannot, identify this actress by sight, or name any role she’s played. I’m not much of a television or movies person. I do, however, now know Jenny McCarthy to be an activist in favor of treating ASD biomedically.) In any event, I had heard, and I believed, that behavioral therapy, and specifically ABA-based therapy, provided the best hope, or even the only proven method, for making progress against autism. We got Martin behavioral therapy. We got him hours and hours of behavioral therapy daily: two hours of home-based ABA, two hours of center-based ABA, 30 minutes of speech therapy, 30 minutes of occupational therapy, 30 minutes of physical therapy.
(Before I write anymore, I must say that all this was provided by New York State. I am deeply grateful to live in a state that values Early Intervention and provides this level of service to children with developmental delays. Without a doubt, EI makes a great difference for a great many children.)
Martin made some initial gains with all this therapy. He sat still longer. He sometimes responded “yes” to questions, instead of repeating the inquirer’s last words. But several issues persisted that seemed more medical than psychological. For example, lethargy often overcame Martin, and he lay on the floor, absentmindedly pushing a toy. He bent at the waist and pushed his hands into his distended belly as if he was experiencing gut pain. And then there was sleeping. Sleeping was, pardon the pun, a nightmare. Martin almost never slept through the night. It could take him 90 minutes or two hours to fall asleep, and usually spent three or even four hours awake between 11:00 p.m. and 5:30 a.m.
It bears mentioning that Adrian and I are lawyers, are fussy and aggressive, and are used to getting what we want. We wanted Martin to improve. Adrian read a lot during the early months after Martin’s diagnosis, mostly mainstream sources like books on behavior. He learned that a gluten-free diet seemed to help some kids on the spectrum, though (from what he’d read) no one was sure why. We resolved to try phasing gluten out of Martin’s diet in January.
We did, indeed, begin phasing out gluten in January, but we never finished the process. Or more accurately stated, we finished phasing out gluten in the context of doing a whole lot else.
That is, in mid-January, Adrian handed me an article he’d printed from the internet. From a mainstream source, a reasonably well-known doctor who reports on medical issues.
The article told the story of a six-year-old boy who, four years earlier, had regressed into autism and become non-verbal.
The boy had recovered.
You would never know, the article stated, that this boy ever had autism. He was now bright and engaging, and a typical grade-schooler.
The article was not long. With only bare-bones analysis, it spoke of “triggering” factors, and how finding what’s triggering autistic symptoms can help to reverse them. This hit-or-miss approach, though painstaking, could offer new hope for the estimated 1-2% of American children with ASD.
To me, the article, the story of the recovered boy, made eminent sense. The light bulb flickered. Autism did not just happen to my son. Something caused, something was still causing, him to have these medical symptoms, which in turn were tied to the developmental delay.
I tacked the article onto the bulletin board in my home office and went to Adrian.
“There’s something we’re missing,” I said, without a trace of doubt. “There’s something more we can do.”
In that moment we left Category No. 1.