John Donvan & Caren Zucker
I wrote about the book NeuroTribes recently and recommended it for anyone who enjoys interesting stories, well-written. While In a Different Key is similar, it contains even more stories – 46 chapters – and the writing may be even better. John Donvan and Caren Zucker are a talented, well-informed team. In a Different Key reminds me of The Making of the Atomic Bomb by Richard Rhodes which tells the story about our growing understanding of the atom interwoven with the stories of the scientists, their families, and the times. Seeing the change in understanding over time is much more meaningful than just being exposed to the current understanding without knowing how it evolved. Equally important is understanding that this evolution was the product of people, their lives, and their interactions, not by names in a book. The emergence of our understanding of autism, autistics, their families, and societies’ reactions is at least as interesting a story. It is an example of how change takes place. These changes did not take place in isolation and parallel changes in society’s view of the roles of women, race, religions, nationality, age, and sexual orientation. In the authors’ words…
That is probably autism’s single certainty: that the story is far from over. The mystery remains complex. Attempts to investigate its nature continue to bring new questions to the surface. The boundary lines set by professionals can, and should be expected to, move yet again.
In that uncertainty lies much of the explanation for why, over a span of eighty years, the story of autism has been so uniquely riven with division and dispute. The concept’s inherent elusiveness, the vagueness in how it has been described, and the variety in how it presents itself – to a degree that hints at infinity – has meant that anyone could say anything about autism, and eventually probably would. This effect was seen repeatedly, in the latching on to the word “autism” by all manner of theories, therapies, claims, interpretations, and controversies – from the scientific to the social to the legal to the nearly religious.
While only some of this helped shed light on what autism is, all of it served as a mirror for the societies that recognized autism as something real. Not everything revealed in that mirror was flattering; not the blaming that autism inspired, or the vituperation, or the exploitation, or the grandstanding, or the outright and sometimes willful neglect of the vulnerable.
At the same time, however, that mirror showed how, in the search for treatments and services, for recognition and understanding, some good and admirable qualities came into play over the decades, on the part of many people. They demonstrated talents for organization, self-sacrifice, the expansion of knowledge through solid science, and for channeling love into pure, inexhaustible energy. This was most true of parental love. To be sure, that love could run awry at times, and be fierce to a fault, but it was one element in the whole long saga that was always, unquestionably, pure.
Indeed, the fact is that even with all the contentiousness attached to the word “autism”, the momentum pushing all the argument has also, over time, pushed all the societies that have tried to deal with autism in the most commendable direction, which is toward ever greater recognition of the dignity of individuals who are different by virtue of fitting the label in some way. It is this interpretation of autism that has come to be shared by the bitterest foes and the most casual bystanders: that having autism – being autistic – represents but one more wrinkle in the fabric of humanity, and that no one among us is living a life “unwrinkled”.