The Problem With the Autism Puzzle Piece
One of the easiest ways to connect a person to a cause is through symbols. We see them everywhere — the peace sign, the raised fist representing Black Lives Matter, the pink ribbons representing breast. When used correctly, a logo and the emotions it can create can help draw someone into a cause and stand as something to fight for and stand behind.
This Friday is World Autism Awareness Day, a day to celebrate those that make up the broad nature of the autism spectrum. Perhaps the most worldwide symbol of autism is that of a puzzle piece. Whether it is the blue puzzle piece belonging to Autism Speaks, or the interlocking puzzle piece ribbon of the Autism Society of America, some of the largest autism organizations in the world still use the puzzle piece. This is despite the clear and evident anger it has caused so many in the autistic community.
The puzzle piece was first used as the “symbol” for autism spectrum disorder in 1963 by the National Autistic Society in the United Kingdom. The symbol stemmed from the idea that autism was a “puzzling condition.” The original image showed a crying child inside a puzzle piece to represent the sadness of the burden that autism was considered to put on a child and family’s life.
There are a lot of ideological beliefs about the puzzle piece. After the research journal Autism: The International Journal of Research and Practice elected to remove the puzzle piece as their logo in 2018, Autism Speaks put out a statement that the puzzle piece is important because it represents the search for answers that will lead to greater understanding and acceptance of people on the autism spectrum. This is what those who support the symbol wish to believe — that it is part of a search for answers and that if they find that answer, it will improve the lives of autistic people. The reality, though, is that the symbol damages the discourse around autism while being widely considered offensive to autistic people. Here are some of the reasons why many autistic people believe the puzzle piece is harmful and needs to be replaced.
The first issue with the puzzle piece and the puzzle ribbon is that it infantilizes autism. Puzzles, by and large, are games designed for children, and the puzzle piece helps create the perception that autism is solely a childhood condition and doesn’t affect adults. This is damaging to the philosophy of creating “awareness” because it helps to add to the consistent issue of disregarding the needs, opinions, and lived experiences of autistic adults.
In reality, once an autistic person reaches 18 (or 21 in the USA), the system forgets about them. In Canada, although it varies by province, most lose access to government services or funding. According to the 2012 Canadian Survey on Disability, the employment rate for the Autistic community was 14.3%, while it was 92.7% for the general population.
Autistic adults often get excluded from the conversations on how to help them. That could be deciding where to dedicate funding, completing research studies on autistic adults to understand their experiences, or simply asking what an autistic adult needs help with to survive the world. This is not just my opinion. There has been an acknowledgment of this fact by industry professionals. Kevin Stoddart is the Director of the Redpath Centre in Toronto, a Mental Health Organization specializing in ASD treatments at all ages. As he sees it, “We’ve excluded people with autism consistently from conversations about research and provision of services.”
Not all of these flaws can be solely placed on the back of the puzzle piece symbol, but it reinforces them. It creates a world where autism is something to be aware of when a person is age 0 through 17 and then forgotten about once they turn 18.
The second major issue with the puzzle piece is what it insinuates. A puzzle piece is part of something unfinished. A puzzle piece by itself inherently means that the puzzle is incomplete. It implies that we are not complete people, that autism is something to be ashamed of because it means we are missing a piece of ourselves.
I don’t need a puzzle piece to know I’m different. I saw it in the way I struggled to learn how to connect with other kids growing up, and I see it in how hard I work to get through social situations every day.
I am different, and quite frankly, I’m proud of my differences. Those differences have created roadblocks in my life but have also helped me get to where I am today. The puzzle piece isn’t saying that, though. It’s saying I am a puzzle, that I am a “challenge.” Since a puzzle cannot complete itself, the puzzle piece says I am incorrect until someone else finds the proper way to solve me. I don’t need to be solved, though; I am not missing any pieces of who I am. I am the person I am thanks to being autistic, both the good and the bad that comes with it.
Symbols have power. I am an openly gay man, and I remember the first time I went to Pride in 2019, and I saw so many people decorate themselves with the symbol of the rainbow. That mark’s design originated to show that there is no one singular sexuality and that everything exists on a spectrum. So many people (including myself) used that to recognize that having a sexual identity different from the “norm” was OK.
The puzzle piece symbols used for autism do not do that. Rather than representing the “spectrum” like some choose to believe, the puzzle piece instead serves as a consistent reminder of the damaging ideology that autistic people are so often still viewed as incomplete and in need of fixing.
Dr. Stephen Shore famously said that “If you’ve met one person with autism, you’ve met one person with autism.” That’s the real takeaway; autism is not a puzzle that can be solved. It is an infinite number of people presenting an endless number of different lived experiences. When we use the puzzle piece as the symbol for autism, it tells autistic people not to embrace their experiences but instead be ashamed of them until hopefully, someone comes by one day with the missing piece that fixes us. But I’m not missing any pieces, and neither are other autistic people. We need to be accepted, not “fixed.”
Getty image by Galina Shaffran.