Wednesday, April 29, 2015

The "normal child inside" (fourth installment): being autistic vs. "having autism"

There have long been two mutually incompatible views of autism. There’s the view of the scientists—the neuroscientists and cognitive scientists--in which autism involves deep neurological differences that specifically impair the more complex aspects of socio-cognitive reasoning. And then there’s the view of the sensation-seeking public, in which autistic individuals have neurotypical social and cognitive capabilities but are trapped inside bodies riddled with sensory-motor impairments. In a nutshell, the AS child doesn’t communicate and socialize neurotypically either because his mind isn't so suited (science), or because his body won’t let him (sensation seekers and wishful thinkers, along with their assorted panderers).

Two generations ago, the “normal child trapped inside” model was also that of some of the self-styled empirical scientists. Psychoanalysts like Bruno Bettelheim made it their job to coax socially withdrawn children into normal sociability by liberating them from the “refrigerator mothers” who had "willed" them into "nonexistence." (Back then it was mothers, rather than uncooperative bodies, that were responsible for autism). But when it comes to clinical psychology in general, neuroscience and experimental psychology have long since discredited the normal child trapped inside.

Special education circles are another matter, as I recently discovered. Some of the more compelling locked-in child stories have penetrated special education programs and are treated as reliable windows into autism.

And these stories are quite compelling. Their star is a nonverbal individual whose inner self has been painstakingly unlocked, emerging as an eloquent, empathetic personality eager to share with us what it’s like to “have autism.” The costar, however, is no longer the psychoanalyst, but some sort of facilitated communication system. This consists of a low or high-tech keyboard and either a human or computerized facilitator. The human facilitates either by supporting child’s wrist, or by holding the keyboard up to the child’s fingers; the computer facilitates via word prediction and word completion software. Some these children appear in YouTube videos or shows like 20/20. Here we see short, often carefully edited clips of the child's fingers touching letters or buttons that spell out short messages, and we hear fluent, expressive voiceovers of longer texts whose actual production we aren’t privy to: soliloquies that typically show levels of eloquence, introspection, and empathy that belie everything that scientists have discovered about autism.

They’re not communicating things like How many ceiling fans do you have in your house? or I have a special computer internet which radio ways are quadrillion light years per second. Rather, they're communicating things like People look at me and assume that I am dumb because I can’t speak and I knowingly contribute to my looking retarded by carrying around a plastic spoon, but spoons are my comfort.

You watch these children’s eyes (to the extent that the videos let you), and you see little or no evidence of focused or coordinated eye gaze; you see eyes that seem to flit all over the place, or to stare upwards or outwards at nothing in particular (and often not at the keyboard that their fingers are pushing against). Perhaps all this can be explained by sensory-motor problems rather than socio-cognitive impairments. But then you have to ask: how can kids whose eyes seem not to be able to track pointing gestures or eye gazes, and who would seem therefore to have no way to deduce what people’s words refer to when uttered, have managed to learn the words for the various things in their everyday environments? Not to mention the more advanced words that have somehow entered their soliloquies, poetry, and memoirs: words like “assume” and “knowingly”? More advanced learners can pick up words from texts alone, but to jumpstart the process you (however neurotypical or neurountypical you are) need real-world connections. Before you can read for meaning, that is, you need a critical mass of basic vocabulary that you’ve actively linked to the outside world. And linking those basic words to the outside world--in other words to their meanings--requires of you (however neurotypical or neurountypical you are) a certain threshold of sustained and appropriately targeted auditory and visual attention.

Here's what Wikipedia has to say about Facilitated Communication (FC) and its promoters:

As early as 1991… more than 40 empirical studies published in peer-reviewed journals involving more than 400 people with autism not only failed to demonstrate FC's efficacy, but indicated that any success reported by proponents of the technique was due to facilitator influence.

Despite claims from FC promoters that autism is a motor control and emotional (i.e. confidence) problem that can be overcome with physical support, autism is, largely, accepted in the academic and clinical arenas as being a neurological problem often accompanied by intellectual disabilities. A core feature of autism is severe communication problems which cannot be overcome simply by supportively holding onto someone's hand.
Misconstruing autism as a disorder that can be unlocked by keyboards and facilitators ignores the science, the much more promising therapies based on that science, and, most of all, the pressing needs of the most vulnerable people involved.


FedUpMom said...

This discussion reminds me of a movie called "My Kid Could Paint That", about a little girl who paints sophisticated abstract paintings -- or does she? It's a similar story about people projecting their own fantasies and desires into a powerless child.

Katharine Beals said...

FedUpMom, That is a fascinating movie--and, yes, very comparable to what's going on with FC. If I recall, the dad sanctioned the documentary in the hope that it would vindicate them, but it seems to do the opposite.