What a difference a frame makes

I have a new book on my future reading list, Steven Silberman’s Neurotribes: The Legacy of Autism and the Future of Neurodiversity. I have now read 3 reviews with the NY Times one being very informative. The bit that caught my attention was Silberman’s rendition of our early medical understanding of what is now referred to Autism Spectrum Disorder, specifically the different approaches by Hans Asperger in Austria and Leo Kanner in the USA. Asperger saw autism as a life long condition showing the variability of the human mind. Yes, those with this condition were different, and many needed extra help and accommodation (don’t we all some time?), but they also brought forth special talents. He clearly appreciated the range of human personality; he did not pathologize the condition in part because the Nazis were looking to purify the race but also I think because his perspective of the clinical data was deep. So now we come to Leo Kanner, an American psychiatrist who saw autism as a childhood condition and possible precursor to adult schizophrenia. Dr. Kanner also thought that a cold mother contributed to the disease, and indeed, some early research into the mothers of autists showed them to be depressed, but then how could you not be when your child was so different emotionally and you were blamed for it? This was also the period when American medicine recommended bottle feeding over breast feeding, another misogynist belief from a rabid patriarchy.

When I was first in graduate school in the mid-1970s, Project TEACCH at UNC-Chapel Hill was pushing back against Kanner with excellent research and improving treatments. I still appreciate my training there very much. Later I went to a neuropsychology conference and heard Martha Denkla MD re-discover Asperger’s work and took that lesson back to my job with an early intervention/prevention mental health service for pre-schoolers. Here the difference in the ‘theoretical frame’ was proved to be more than academic.

I was asked to observe a child in a playgroup who workers thought was quite different, and he was, less engaged with playing with peers and fascinated by the record player turning around. He seemed bright otherwise, gross motor about on target, fine motor very good and language only a little delayed. His mother was nervous and concerned. The family was well placed socially and we suspected she was under their microscope as to her parenting and the development of her child. Indeed, media stories about the “cold mother hypothesis” were common then. One day we came to work to find out that in her shame and grief, she had killed her son (inadvertently?) and then herself. My heart still cries out in anguish over this tragedy.

I went to observe another child in his preschool for similar concerns. We made sure to counter any parental blame from the outset (and this family seemed less concerned with their image and more supportive of difficulties). This boy knew what car I had driven because he knew every car in the lot otherwise; he called his grandfathers either “white” or “black” because of the color of his hair. He did not socialize fully and also liked mechanical motion. He had to be coached as to how to hug and kiss. He was one of the first to benefit from an evolving theoretical frame more adequate to the task. The challenge today is more how to support these people across their life span.

So the frame does make a difference, eh? Travel on (and maybe check out Silberman’s book).

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