Dr. Marc Ellison: Time has come to re-imagine the view of autism
The Herald-Dispatch - 3/26/2018
Since the mid-1960s, autism spectrum disorder (ASD) has been visually represented by a puzzle piece. We see the symbol almost every day. It's a magnet on the back of a car, and it adorns specialized, colorful license plates. We see it on T-shirts. It's on the covers of books, journals, and magazines. It's even fairly common to see a puzzle piece tattoo from time to time.
The logo is so established as the symbol for autism that the Autism Society of America trademarked their puzzle piece ribbon which, it reports, was "adopted in 1999 as the universal sign of autism awareness." Regardless of how it's presented, the puzzle piece image was designed decades ago to unify a growing community and increase awareness of a disorder that was misunderstood.
Recently, publishers of the peer-reviewed journal Autism removed puzzle piece imagery from the cover of the publication. That decision was based on evidence: researchers from the University of WisconsinMadison, Ursinus College, and the University of Kentucky found that research participants identified autism-related puzzle pieces "with imperfection, incompletion, uncertainty, difficulty, the state of being unsolved, and, most poignantly, being missing."
That finding backs up feelings many adults with autism have expressed in recent years about the image.
The puzzle piece originated during a time when autism was a great unknown. Designed two decades after autism was first defined in the United States, it symbolized all the things we didn't know. What's the true prevalence of autism in our society? What causes it? How do we best educate and treat diagnosed children? What happens when children with autism grow into adults?
The imagery was created by parents, teachers, and other professionals who wanted the absolute best outcomes for those with autism; nevertheless, it was designed from the perspective of neurotypicals (a label used in the autism community for people not diagnosed with ASD). It was not designed from the viewpoint of people with autism.
Many with ASD have expressed publicly their opinions that the puzzle piece perpetuates a negative stereotype. In editorials, magazine articles, personal blogs and social media, they've described feeling stigmatized by the image.
Some say it suggests they are incomplete, not whole. Others believe the image doesn't represent them at all, but rather illustrates the uncertainty experienced by neurotypicals who interact with them.
Many, like Judy Endow, point out that we know a great deal more about autism than we did in the 1960s, and that the disorder is much less a puzzle than it was when the image was created. Ms. Endow, a mental health professional also diagnosed with autism, speaks out often against the use of the image. In a 2014 essay titled "Good Night Autism Puzzle Pieces," she stated that it "does not matter what the original historic purpose or what any organization's current intent is for using the puzzle piece. All of these things used to matter, but [in the present], we have a different landscape."
The puzzle piece logo was designed to increase awareness of a disorder very few understood in the 1960s. Awareness was important: effective education, appropriate services, and evidence-based treatment could never have materialized without it. But we've achieved awareness.
It's time now to move past awareness and into acceptance. Acceptance into classrooms, schools, colleges, jobs and careers, neighborhoods, and relationships. And as emerging research demonstrates and those diagnosed with autism tell us, true acceptance may not be possible if autism is represented by imagery that perpetuates stereotypes about -and causes emotional distress for - the very people it's intended to help.
April is Autism Awareness Month. I hope you'll join me in being more aware, and more accepting, of those living with ASD.
Dr. Marc Ellison is the executive director of the West Virginia Autism Training Center, located at Marshall University.