Neurodiversity

The Iceberg Speaks

Given the stereotype of the mute, “unreachable” autistic child that comes most easily to many people’s minds whenever autism is discussed, I’m well aware of what a sharp departure from that image it may seem when someone claims as I did recently that, “… autistic people, given the opportunity, have always been fully capable of speaking for ourselves and acting as an independent, autonomous force in the world.”  It might be easy to assume I am referring only to those autistic people who happen to be fluently verbal, while conveniently “forgetting” those who are not.  Not so.  There is a lingua franca, a common language shareable between nonverbal autistic people and the verbal world that has been available throughout recorded history, limited in its availability only by any given society’s literacy rate.  That common language is the written word.

That this is so is a sticky, thorny issue for those who cleave to that arresting stereotype of the unreachable child; it is a fact which has been regularly rediscovered as an isolated “miracle” before being duly reburied in preparation for its rediscovery yet again, rinse, lather, repeat.  This was brought sharply home to me as I was researching a figure who appears in a recent documentary, The Sunshine Boy, which follows the experiences of an autistic boy and his mother.  The figure I was interested in was the developer of a particular teaching method for autistic children, Soma Mukhopadhyay.  My initial impression, gathered from a radio interview about the documentary, was that the method involved teaching nonverbal autistic children to write or type rather than insisting that they speak; I hoped to use that as a springboard for the thoughts below.

Had I been mistaken about the teaching method however, I had a familiar example to fall back on, a no-nonsense, clear-eyed, and (within the community) widely read nonverbal autistic blogger to whom I have linked before, and whose very existence gives the lie to the stereotype that’s in question here.  And who should I run into online while looking into Soma Mukhopadhyay than that very woman, Amanda Baggs.  What I found was a 2008 essay in which she described, with a “mixture of rage and deep pain,” the rewriting of history on behalf of Mrs. Mukhopadhyay and the commoditization of her all-but-nonverbal autistic son. Soma Mukhopadhyay’s son Tito as it happens is a published poet who has been breathlessly described as providing “a window into autism such as the world has never seen”—a description, Amanda Baggs reminds us, offered in blatant, blissful ignorance of a long history of such well-documented, previously “seen” windows.

My aim here is to highlight a thread of common experience that is woven throughout the autistic spectrum, but before I go on, ponder for a moment the number of people languishing in unnecessary silence, pain, and isolation right now (as well as their predecessors now passed on, many institutionalized for life), mute and “unreachable” simply because of our ever-repeating surprise and wonder, our endless capacity to “discover” over and over again that the nonverbal are people, and capable of communicating—via the written word. There is a bitter and telling irony here in that a difficulty with applying generalizations from one situation to another similar one is recognized as an autistic trait, yet when it occurs over and over this way among those supposedly free of certifiable mental handicaps, it is simply accepted as the way of the world.  Rage and deep pain are not inappropriate responses.

“The iceberg whole” was a phrase I borrowed from Shift’s founding editor Andrew Lehman, from a post of his over at Neoteny.org that offered the example of a woman he had known whose personality took on surprising characteristics when and only when she was dealing with others via text, on a listserve, rather than face-to-face.  He referred to this fuller personality as the iceberg whole, as opposed to the smaller, above-the-surface portion which was all that appeared of this woman in person.  In a comment, I related his observation to the notion of a “text-only personality,” something I had first observed in my wife and later in many of our online acquaintances; that comment was eventually fleshed out to become an entry here at Shift.

What I would like to suggest now is that what was referred to then as icebergs whole, and what was described just now, the perpetually rediscovered ability of nonverbal autistic people to communicate via the written word, are part of one and the same continuum, all of which can be referred to as autism.

Autism in this sense involves an unbroken continuum of behavior that runs from full personalities who engage in no verbal communication whatsoever, to nonverbal aspects of personality in those who are to all appearances both fluently verbal and not autistic—it being only aspects of their personalities that are capable of expressing themselves solely via text or other nonverbal means.  Now, if we need some way to discern who on this continuum can benefit from professional services, support, and accommodations, and I believe we do, then by all means let all the relevant experts have at it—not just the psychiatrists.

For all our sakes though, let’s not lose sight of the idea that this is a continuum that extends into all our lives; if you feel it does not describe you personally, it certainly describes people you know.  In order to see this though, you have to be able to take in those you know and meet by means other than how they present themselves verbally.  Quick instructions for how to do this may be conveyable only in glib metaphors such as learning to read between the lines, or listening to the silences; better maybe to reflect on the fact that the high value we place on verbal communication, on voice-to-voice sociability, is an artifact of our place and time. For all the advantages that come with being a highly verbal society, it also has the effect of devaluing and even rendering invisible some or all of the nonverbal reality we all participate in to one degree or another.

Whether we call that nonverbal reality autism or something else isn’t so much the point as that we recognize it when we see it, in ourselves and in others, and neither dismiss it out of hand nor place it on a pedestal, elevating it to a status of special, precious, or “such as the world has never seen.”  To do either is to tilt life’s playing field viciously against not only those people who are nonverbally autistic, but against the recognition of all human experience that does not lend itself to spoken expression.

If there are true wonders and surprises in store for anybody, I expect they will come when that playing field is leveled for all of us, not when the next nonverbal autistic kid is “miraculously” discovered to have wants, needs, talents, and opinions of his or her own.  Teaching such kids to read and write is vital, but is in and of itself no more an “intervention process” than is sending any other child off to kindergarten.

A little less drama, and a lot more lingua franca, please.

Mark Stairwalt on 12/4/09 in featured, Language | 3 Comments | Read More