Lost, is it, buried? One more missing piece?
But nothing’s lost. Or else: all is translation.
James Merrill “Lost in Translation” (1974)
The puzzle piece as a symbol for autism awareness, advocacy, and services is ubiquitous. Indeed, with the exception of the pink ribbon for breast cancer advocacy, we can think of no other image that is so clearly associated with a particular condition. The puzzle piece is now associated largely with the Autism Speaks Foundation and the Autism Society of America, but it was first used for autism advocacy in 1963 by the newly established National Autistic Society (NAS), an organization founded by parents and modeled on the Spastics Society of Children with Cerebral Palsy. The logo (no longer used by the NAS) was designed by Gerald Gasson, parent of an autistic child and member of the NAS board of directors. Gasson superimposed the image of a crying child on the puzzle piece to illustrate both that autism is a baffling condition and that people with autism suffer and do not “fit in” (Allison, 1987). In recent years, the puzzle piece has become a popular and hotly contested symbol in the media, in blogs, and in the world of philanthropy—the Autism Speaks Foundation has trademarked its own blue (perhaps male), anthropomorphized puzzle piece—and the passions the images elicit call out for comment. Autism: The International Journal of Research and Practice recently was asked to defend its use of a puzzle piece on the cover, and the resulting comments ranged from enthusiastically positive about the use of the puzzle piece to represent autism to vitriolic in their disdain for this symbol (http://the-art-of-autism.com/the-autism-puzzle-piece-a-symbol-of-what/). Why does the puzzle piece endure and why does it generate so much discussion and controversy?
One way to begin answering this question is to think about autism spectrum disorder (ASD)—the phenomenon to which the puzzle refers—as an explanation for the confusion, and sometimes intense suffering, people experience as they struggle to relate, as individuals, to societies that are constantly changing shape. Certainly, the communities into which autistic individuals are born today are very different from the past, when so many people with autism were given unhelpful diagnoses such as childhood schizophrenia or mental retardation and were often institutionalized; when restricted interests and social and communication impairments were stigmatized, when mothers were blamed for their children’s problems, and when schools and employers could offer them few opportunities. While there is much more that must be done to support people with disabilities, the 21st century, particularly in North America and Europe, offers people with ASD unprecedented possibilities. Just as Merrill’s puzzle stands for the unstable relationship between the individual and the human condition in general, so too is ASD an ever-changing assemblage of ideas and practices that, perhaps like any historical construct, is a set of relationships “at once interlocking and in tension” (Williams, 1977). The meanings and values of “autism,” as we now conceive of it, like genetics or economics, or any other construction a society may use to explain human variation, change constantly because societies change.