Tuesday, May 5, 2015

The problem with kids like J (one of them, anyway)

As I discussed in my earlier post, autism as imagined by pop culture is at odds with autism as explained by scientists. This is not so much the case with high functioning autism: the person most famous for being autistic, after all, is Temple Grandin, and she presents a highly accurate exemplar of high functioning autism. But low functioning autism, particularly the world of nonverbal individuals, leaves much room for imagination and wishful thinking.

One result are miracle stories: stories in which the nonverbal individual emerges, typically via some sort of facilitated communication system, as higher functioning than Temple Grandin is. That is, communicative utterances are attributed to the nonverbal individual that show a greater level of eloquence, empathy, and introspection that we hear from Temple Grandin. In (among other things) “explaining” to us what it’s like to “have autism,” these communications belie everything that scientists have discovered about autism. It’s just that, unlike Temple Grandin’s communications, those of nonverbal individuals with autism are (by definition) neither spoken nor typed without assistance.

Few people seem to wonder how someone can have low functioning autism (characterized, not just by verbal difficulties, but by difficulties with eye contact and social attentiveness and reciprocity) and yet end up communicating more neurotypically than one of the highest functioning autistic people in the world. Or perhaps Temple Grandin, too, could sound fully neurotypical if only her communications were facilitated.

Of course, this idea should ring false even to the most stalwart proponents of facilitated communication. Indeed, take any autistic person who communicates independently and fluently (and here I include J): how likely is it that such a person would suddenly start communicating at a neurotypical level of eloquence and empathy if we simply provided “facilitation”? Is a child who carries on 24/7 about ceiling fans really going to share intimate, empathetic feelings with me if I start holding up a keyboard to his fingertips?

The problem (“problem”) with kids like J is that they leave little room to the imagination.

But there’s room in plenty of other places. Indeed, the tendency—and temptation—to see communicative intent where none actually exists is nearly everywhere. When our babies cry, our cats meow, or our plants wilt, they are “telling” us that they need something; when we figure out how to deal with a difficult child, he has “taught us” something new; and when a nonverbal child pushes a button on a keyboard (with or without assistance) in order to make something happen, he or she must be “expressing” an actual desire for that something rather than merely executing a particular stimulus that gets a particular response.

1 comment:

Auntie Ann said...

These things make me so sad. It diverts parents to trying useless things, wasting time and money on approaches that can never work. They also delay the day when parents accept their child as they really are, and work with that reality to give their kid everything they can.