The puzzle piece is often one used to
represent individuals with autism spectrum disorders.
I’m not sure where it originated, but it seems to be commonly known that
its existence is based on the thought that those with autism are puzzling, and
that we need to find the missing pieces to solve some sort of problem. I disagree with this mindset, and have spoken with many individuals on the spectrum who emphatically feel the same way.
Could it have come from the largest autism science and advocacy organization, founded by those who had the funding available to start up a $25,000,000 organization “dedicated to funding research into the causes, prevention, treatments and a cure for autism”? Personally, I think the medical view that if we put enough money into it, we can find the missing piece - a cure - is a negative view. Autism is a neurological disorder which I don’t see as a PROBLEM to be solved. It’s simply a means to describe a collection of attributes which relate to differences in processing, not to problems or missing pieces in society. Those with autism have contributed VASTLY to our world, from computer-based resources to livestock handling to some of the best art and engineering our world has to offer, among many other contributions in every area imaginable. For some, their contributions may well be a direct result of their autism - common strengths include exceptional visual processing abilities, ability to
focus on a task or subject area without distraction or boredom, and strong rote memory abilities, among many others, depending on the individual.
Focusing on a cure supports the viewpoint that we need to ‘fix’ those with autism, and gives individuals, caregivers, and those who support them false hope that autism is a medical problem to be solved. Autism is neurological, and autism is life-long. An individual on the autism spectrum may not always meet criteria for diagnosis their entire life, because fantastic services are available to help individuals on the spectrum use their strengths to support their
challenges. Is this a cure? No, it’s good teaching. Is there a cure for learning disabilities or other similar neurological disorders? No, but if we live in an inclusive world, we know that every child learns differently, and through good teaching, can learn to use their own strengths to support their own challenges, regardless of who they are and what diagnosis they do or don’t have.
Further, our current diagnostic process is behavioural. We diagnose autism based on the behaviours that we see.
If we are able to change behaviours, we are able to change a diagnosis, but autism is a neurological disorder, not a behavioural one. Have we changed neurology when we change behaviour? SHOULD we aim to change the neurology of those on the spectrum? These are certainly challenging and unanswered questions.
I see a problem when people use the phrases “suffer from” or “struggle with” autism. Having autism doesn’t have to mean suffering or struggling. I know individuals who have difficulty, and I know many who are simply living with autism, and enjoying who they are. Temple Grandin, a well-known figure in the autism world whose success surpasses that which most of us seek, indicates that if given the chance to go back and NOT have autism, she would not, as autism is a part of who she is.
Yet organizations continue to use the puzzle piece as a symbol of autism; as one large organization says it, the puzzle piece represents that they are “...bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.” This organization “aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns
and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.”
I wish we could find another symbol. Unfortunately, I don’t have $25,000,000 behind me in order to make this a
reality. What I can do is urge those who consider a puzzle piece to be a symbol of autism to just think about
What about thinking about a puzzle piece representing each of us, and the whole puzzle is the whole world. We are each one piece, and when put together, form society. We are all interconnected, and the world is incomplete without any one piece.
When using the puzzle piece, consider that one sole piece isn’t really representative of anything –represent autism with several pieces in several colours, all connected, with no missing pieces. In terms of autism, I like the ribbon with the connected pieces. To me, it means that if we all link together, we can support each other and create a spectrum of possibilities, but without any one of us, the puzzle is incomplete. Together, we form a mosaic that is our
colourful and beautiful world.
Casey Burgess has a B.Sc.in Psychology, an M.A. in Education (Curriculum and Instruction), and a Ph.D. in progress in Education (Cognition and Learning). She has 20 years experience with direct service, curriculum development, workshop facilitation, and supervisory experience supporting children who have Autism Spectrum Disorders, and their families. She currently frames her work using a developmental, relationship-based, self-regulation lens.