FOR WHAT IT’S WORTH

The title of this post comes from an old Buffalo Springfield song, written and sung by Stephen Stills:

There’s battle lines being drawn,
Nobody’s right if everybody’s wrong.

It’s been a while since I last wrote directly about the neurodiversity movement. For a period of time, we had a conversation going on here that involved responsible ⎯ and some less than responsible ⎯ voices from differing viewpoints. But the conversation died out when it became clear that we were speaking different languages, with the line drawn over the definitions of three words: autism, cure, and acceptance.

We can’t agree on the nature of autism. While most of us in the biomed community see autism as a physical disorder with varied mental, behavioral, biological, and neurological sequellae, some ⎯ but not all ⎯ vocal espousers of neurodiversity see it more as a different cognition that may involve certain challenges but needs no cure.

Ah, cure: now there’s a word we can’t agree on. You can’t even get the same definition among those of us who are curebies. There is truly a spectrum running between a few who think no intervention at all is necessary, and a few who think the idea of intervention is necessary to create some mythical status of “normal” (when the essence of human “typicality” is diversity). Most of us fall somewhere in the middle of that spectrum, and yet we tend to identify ourselves as either pro-cure or anti-cure.

Those who are anti-cure argue that the pro-cure folks lack acceptance of their children. Most of us who are pro-cure on the other hand, will gladly say that we accept our children; what we can’t accept is something inside of them that goes well beyond what genetics intended for them ⎯ something that prevents them from using all of the gifts that genetics have bestowed on them.

What has divided the two camps, however, is more than just the definitions we give the words we use; the divide really results from philosophical differences that can’t be resolved. Although we have been able to politely listen to one another on questions about the nature of autism, the root causes of autism, and the matter of acceptance, there is one difference that seems to keep us from even being civil to one another. That is the issue of “cure.”

It is ironic that most of us agree that some intervention is necessary (even if we can’t agree on the nature of the intervention), and yet we divide ourselves over the word we use to describe the process of intervention.

Truly, battle lines are being drawn and the rhetoric is escalating. Lately I have seen measured responses to attacks by members of the on-line neurodiversity movement. My particular favorite, a commentary in the Huffington Post by Lisa Stagliano, makes the point quite nicely, and with a fine sense of humor, that all of our children have unique challenges, and nobody ⎯ but nobody ⎯ can define the autism experience for our children and dictate the right road.

I will never stop trying to help my girls recover from their autism. I can not tell you what recovery means. It varies by kid and according to God’s grace. If recovery means only that Peanut understands she should sit on the toilet, not play in the toilet, I’ll take it.

Recovering your kids doesn’t mean denying their value as people. To the contrary, it means we are willing to devote our lives, our savings, our sanity to their improved health, development and well being.

Most of what I have seen from the other side lately after Lisa’s piece, or the recent opinion piece by David Kirby, also in the Huffington Post, have either hit on the same, tired themes of how there is no epidemic and it’s nothing to be cured, etc., or there have been howls of protest that some are using the word “neurodiverse” to describe the adherents of the neurodiversity philosophy.

Okay, I get it. Neurodiversity is not a condition but a philosophy. But let’s face it; “the neurodiverse” is a lot easier to type out and reads more cleanly than “the adherents of the neurodiversity philosophy.” I suspect that’s the prime reason the term came into use rather than any intention of using it in a derogatory manner. Can the same be said for the constant labeling of all of us in the biomed community as “members of the mercury militia?”

Although most of us believe quite firmly that mercury poisoning has played an active role ⎯ and perhaps the key role ⎯ in triggering our children’s autism, and that some of the symptoms we see are consistent with heavy-metal poisoning, it is equally true that most of us now accept that we must look beyond the question of mercury to help our children. Of course, the neurodiversity community knows that. Their favorite target is Andy Wakefield, whose work (which has been replicated, something that tends to be ignored) has little to do with the question of mercury poisoning.

Despite its inaccuracy, I haven’t seen anyone complain about seeing the term “mercury militia” used with an obvious tone of derision. Most of us realize that there are far better things to be worried about than what we are called. So go ahead and call me a member of the mercury militia if you like; I’ll wear it as a badge of honor. I’ll gladly be a little militant if it means helping recover my child and perhaps help prevent the need for recovery in children yet to be born.

In the meantime, I will continue to keep reading what the adherents of the … oh, what the hell … the neurodiverse (some of whom I am lucky enough to consider friends) have to say in the hopes that I can learn more about autism from those who have something to say. And I hope some day that a civil dialog may resume. But I won’t hold my breath.