Wednesday, August 21, 2013

Autism and the "normal child inside" fallacy

Much has been learned about autism since the days of the "normal child locked inside" paradigm, in which mute children were taken away from their "refrigerator" mothers and psychoanalyzed into normalcy by the likes of Bruno Bettelheim.

Now we know that autism involves deep brain differences, both in overall neural connectivity and in specific structures like the amygdala. We know that, even among the highest functioning autistic and Asperger's children, significant delays persist in the social-emotional sphere, particularly in facial expression reading and in perspective taking skills. Neuropsychiatric research suggests that, along pretty much every cognitive dimension except for visual processing, autism correlates with weaknesses in complex information processing.

Simply put, there is no normal child inside--anywhere you look.

But that hasn't stopped the popular media, popular culture, and the wishful thinking of hopeful parents. A decade ago we had Tito and his introspective poetry:

I have fancied a little dream and the world is left unseen… with the light of your eyes through the darkness of the night… I have held that little dream beyond my world, beyond all scenes./ and in that dream I saw perhaps...the bleeding drops of my heart... through all smiles through all tears...Coming from far but never near...I have held it close since then...close within my darkest pain.
Today we have Carly and her letters to her father:
Dear Dad, I love when you read to me. And I love that you believe in me. I know I am not the easiest kid in the world however you are always there for me holding my hand and picking me up. I love you.
And her novel:
I want you to close your eyes and imagine a girl all alone in the middle of the jungle. All she can hear are the sound of the animals. But what she does not know is that the sounds aren't just random sounds. In fact the animals are talking to each other. People think that a lion's roar is its way to scare you. But let me tell you from experience that a roar is not just a ROAR. Actually a roar can mean many things depending on the tone. I think that humankind is just oblivious to many things that have been around for years. I think that humans are so silly.
It would seem that, even where they are now, both Tito and Carly meet the official diagnostic criteria for autism. Neither of them speaks; their eye contact appears minimal; they don't appear to do much "sharing of attention" with others--something that involves monitoring what other people are attending to and moderating one's behavior accordingly.

But is either of them really a normal child locked up inside an autistic one?

One thing that raises this question is the level of introspective, communicative, and perspective-taking skills seen in the above writing samples. These go far beyond what we see in the most high functioning autistic individuals who are able to speak, for which Temple Grandin is the best known example.

Perhaps neither Tito nor Carly is actually autistic, but only appears so, superficially, because of a severe apraxia that makes it difficult to track eye gaze and impossible to speak.

Then there's the second video of Carly in which we actually see her type.

Sentences take minutes of strenuous work to complete (along with a steady of flow of chips and dip); every word can be chosen from a drop-down menu; the sophisticated language and perspective taking of the first video (where we don't see her type) are nowhere to be seen; and answers seem driven by simple associations of key words (e.g., Cape Cod to Boston).

Whatever is really going on here, it's safe to say that neither Carly nor Tito represents the norm for autism.

...And yet the media is happy to serve up the opposite impression--along with a lot of false hopes.


FedUpMom said...

To me, it's a big red flag when these kids "write" exactly what the adults want to hear. Any parent of a difficult child would love to hear the child say "I know I'm not the easiest kid in the world ..." but it's extremely rare. Most neurotypical kids don't have that kind of self-awareness and empathy for their parents, so it seems especially unlikely for a child with autism (am I allowed to say "autistic kid" on this blog?)

Carly was discussed on kitchen table math here:

Is this a clinically-known hypothesis on autism?

FedUpMom said...

I just watched the second video. It's clear that the video was made as a response to skeptics, but I'm even more skeptical after watching it. They should have made a full disclosure at the beginning of the video about what software she's using. There's clearly some powerful auto-completion going on. What's Carly like with a plain word-processing program like the one I'm using now?