A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.
The great divide in the autism community occurs between those who view autism as a unique — and perhaps advantageous — extension of typical brain wiring versus those who experience the potentially debilitating symptoms of the condition. In other words: Is autism a gift or a public health crisis?
Maybe it’s both. For every proud story of idiosyncrasy and unabashed connection, for every open mind and open door, there is a story of suffering, of sacrifice, and of soreness that comes with navigating a world of missing links — a world of enormous complexity at both synaptic and societal levels.
Throw in an unprecedented global pandemic, and the spectrum of the autism experience becomes wider, deeper, and more complex. On one end, there may be comfort in seclusion: the virtual realms catalyzed by Covid-19 can alleviate the anxiety, communication barriers, and sensory overload experienced by some people with autism during in-person interactions. On the other end, the pandemic has upended routines for a population that craves predictability and structure, interrupted behavioral and educational interventions outside the home, and multiplied the need for emergency psychiatric assistance at a time of reduced capacity. Given the high rates of comorbid mental illness among people with autism, these scars may last long after societal reopening.
Now more than ever, autism awareness — and increasingly acceptance — should mirror the spectrum of the condition: a celebration of fortitude and uniqueness as well as a recognition of the pain that may lie below the surface.