Naysaying

In Wednesday’s post I included a reference to the “subtle naysayers.” Those are the people who say they support our journey but who often lob jabs or zingers that suggest otherwise. I gave seven examples of statements (e.g., “Is that actually a scientifically accepted principle?”) that, to me at least, translate as, “I think it’s wonderful that you want to help your son, so I’m going to say that I’m rooting for you! Deep down, though, I don’t really think your process of diet, supplementation, and other interventions can recover your son.”

In case yesterday’s post didn’t make the point, here are some other examples of subtle naysaying: “Of course, you need to leave room for Martin just to be a kid. Balance is key. Don’t go overboard.” “I bet there isn’t another mom doing as much as you do!” “Isn’t chelation dangerous?” “I was reading about a family that stopped all supplementation. Their son did even better without it.” “It’s just so hard to believe that mainstream doctors don’t know about this.” “Can you take a break from the diet over vacation?”

And then there’s my, ahem!, favorite: “It’s so great, what you’re trying to do.” What’s wrong with that statement? The word “trying,” which implies lack of success. True champions say, “It’s so great, what you’re doing,” or, “It’s so great to watch Martin’s progress.” Subtle naysayers refer to how hard I’m trying.

In any event, after I drafted yesterday’s post, I spent some time contemplating—that is, I took a shower and had ten minutes to myself—why the subtle naysayers bother me. I won’t mince words: They do bother me! Here’s the reason:

When Martin has a week like this week has been, then at least a dozen times daily the idea of throwing in the towel drops into my head. Yes, I contemplate quitting the recovery process. I hear the little voice that says it would be easier, so much easier, to live according to the traditional notion that autism is a behavioral or communication disorder and therefore should be treated just with behavior therapies.

And when that little voice in my head is speaking, what I need is to hear a bigger, louder voice—preferably outside my head—reminding me that (1) “autism” is the symptoms of an underlying immune disorder, a medical condition that should be treated like any other need to heal; (2) recovery is bound to be a series of ups and downs, and ultimate success is more likely to come from surviving the downs than celebrating the ups; and (3) although it would be easier, right now, to give up biomedical treatment, leaving Martin untreated would be harder in the long run, for him as well as for me and Adrian.

That bigger, louder voice is never going to come from a subtle naysayer. A subtle naysayer looks for cracks, looks for weaknesses, to insert seeds of doubt and coax me away from the “extremes” of the recovery process. A subtle naysayer might think s/he is being helpful: If I’m sleepless, and alternating hope and desperation, and preoccupied with Martin’s special diet and supplementation and everything else, wouldn’t I be happier with none of that to worry about?

So I can’t turn to a subtle naysayer for help. Not even in a week like this, when I need all the support I can get. Indeed, especially not in a week like this, because when I’m at my lowest is when a naysayer is most likely to strike.

Which leaves me with Adrian, other families in recovery, and the few people outside the recovery community who truly understand.

I wish there were more.

One thought on “Naysaying

  1. Pingback: Judgments Redux | Finding My Kid

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