Saturday, October 4, 2008

The Autism Spectrum Is (Still) Expanding

Ettina recently piqued my interest with a comment she left on one of my earlier posts, referring to "Pathological Demand Avoidance" as a subtype of autism/PDD. I follow autism research pretty closely, and had never heard of such a category, so naturally I had to read all about it. I found not only a description of PDA, but also of several other emerging autismlike categories.

Not surprisingly, there is a considerable gap between Ettina's writing about her own demand avoidance (she does not consider it "pathological") and the official descriptions I've been able to find online, which emphasize manipulation of others and deliberately provocative acts. The areas in which Ettina's self-assessment matches the official description are:

  • clumsiness
  • vivid imagination*
  • good eye contact; able to pass as NT
  • flying into sudden rages when told to do something
  • mild, often barely-noticeable social difficulties**
Where the accounts begin to diverge is in the interpretations offered for the sudden defiant or emotional outbursts. Elizabeth Newson (who first described PDA) says people with PDA are "obsessed" with avoiding the "ordinary demands of life" and lack the core of personal identity (and the corresponding faculties for self-discipline: pride and shame) that normal children begin developing by around preschool age. Digby Tantam, in his brief article describing a bunch of PDA teenagers (whom he labels as having a subtype of Asperger syndrome) says people with PDA create confrontation and chaos because they cannot read other people's emotions, and desire situations in which the emotional content is obvious (i.e., crises).

In her open letter to Tantam, Ettina contradicts the latter hypothesis.

I am terrified when others are mad at me, and very upset when others are sad around me. It would make no sense for me to deliberately induce such an unpleasant situation. If I'm scared because I don't know how someone is feeling, I withdraw and try not to be noticed. I don't try to provoke them to attack me or induce sympathetic anguish in me by being upset!

She clearly doesn't need to provoke extreme reactions in order to notice other people's emotions; indeed, so sensitive is she to what others are feeling that such scenes cause her great distress. Neither does her writing give any indication of an underdeveloped sense of self. However, these two experts' bafflement at PDA children's unexpected outbursts and noncompliance --- and the insistence that it must be either willful or indicative of some profound lack of selfhood --- evoke earlier autism experts' confusion over sensory overload. It took a long time, and listening to the voices of actual autistics, before unusual sensory experiences were accepted as being part of autism, and autistic people's reaction to those experiences began to be seen as reactions, rather than bizarre behavior indulged in just to annoy others. I think that Ettina, and others with PDA, are probably so hypersensitive to the emotions of people around them that tension and conflict, however slight, literally incapacitate them, as certain sensory stimuli are already known to incapacitate some autistics. That would mesh with the inclusion of PDA under the PDD umbrella, since the inability to mute or filter one's perceptions figures in both PDA and autism.

*Interestingly, vivid imagination and a love of pretending are characteristics that often show up in autistic girls and women. Probably not coincidentally, PDA has a much higher female-to-male ratio than do autism or AS (1:1 as opposed to 1:4 and 1:9, respectively).
**Ettina describes these as specific to particular areas of social understanding. She does perfectly well at reading emotions and nonverbal signals in one-on-one interactions, but has trouble recognizing group dynamics.

1 comment:

Ettina said...

Interesting hypothesis. I'll have to ponder that.