Let's Change the Disability Narrative One Story at a Time
Posted by The Art of Autism | April 20, 2019
By Debra Muzikar
(Editor’s update: In 2020 the Art of Autism nonprofit made a commitment not to use the puzzle piece in any of our promotions).
As language evolves, so do symbols.
The origins of the puzzle piece, the primary symbol for autism, go back to 1963. It was created by Gerald Gasson, a parent and board member for the National Autistic Society (formerly The Society for Autistic Children) in London. The board believed autistic people suffered from a ‘puzzling’ condition. They adopted the logo because it didn’t look like any other image used for charitable or commercial use. Included with the puzzle piece was an image of a weeping child. The weeping child was used as a reminder that Autistic people suffer from their condition.
When I researched, I was reminded how far we’ve come in our use of language to describe people with developmental disabilities. In the 1960’s people with developmental disabilities were referred to as mentally handicapped. People with cerebral palsy were called spastics. The label “autistic” wasn’t commonly accepted. Children with autism were thought to be psychotic and were diagnosed as having childhood schizophrenia. Autism was blamed on refrigerator mothers.
To the National Autistic Society’s credit, they’ve evolved and don’t use that image anymore. This is their new image.
I decided to do an informal survey of my friends on Facebook about the puzzle piece logo. Should it stay? Should it go? What would you replace it with?
I received over 100 responses. Some people emailed me off-list. As usual the responses I received were intelligent and thought provoking.
On the side of appreciating the puzzle piece logo, parent Keri Bowers writes, “the political correctness of so many things in today’s world is disturbing to me. It’s hard to keep up, actually, as the terms flip – as in person first language (PFL). When Taylor was young, I called him an autistic child. Then that became a bad thing. Now it’s flipped back from a person with autism, to an autistic person – just where I started. A puzzle piece implies a mystery to be solved or something to be put together. Is that untrue in autism? Is that really hurtful or did we make that up to feel better? I believe my son is a mystery – still, after almost 26 years, and he is ‘missing’ certain understandings, skills and abilities as an ‘autistic person.’ He would tell you – as he told a group of volunteers at a training he helped me facilitate yesterday, ‘I just don’t get certain things.’ Is it insulting to imply through imagery a particular truth about him?”
Maria Hall, parent, “My son is a puzzle wrapped in an enigma . . . I love the puzzle piece.”
Sally Verduzco, parent, “I love the puzzle piece . . . It’s part of a unit. Together all of us in our own reality and ways, place each puzzle in the right place to create a unit. Unity coming together. Many pieces as one.”
Savana Rose, parent, “I really like the puzzle. To me it does perfectly symbolize all the different ways that our individual kids fit together. It symbolizes the complicated ways in which this disorder may have happened to our kids. It symbolizes how there’s no one therapy that works for everyone, and sometimes it’s a whole puzzle of therapies that actually work. How did this happen? How do we help? How are they different? How are they alike? What works? What doesn’t? It’s a complicated puzzle to me and the logo speaks all that to me.”
Marge Pamintuan, parent, “It’s a symbol – perhaps to some, it’s a ‘missing’ piece. I’d like to think our kiddos are the COMPLETING PIECE of the human puzzle.”
Just when I thought it was only parents who liked the puzzle symbol, I received this input from Erin Clemens who is on the spectrum, “I like the puzzle piece. I like it because it’s not about the end result, but the PROCESS of putting the pieces together. I also like it because it reminds us that each person, even though all grouped in as being on the spectrum, is still unique and has their own way of fitting in.”
There were some who wouldn’t mind keeping the puzzle piece if the message behind it were reframed.
Jennifer O’Toole, “I viscerally dislike the puzzle pieces as symbols of that which must be figured out and ‘solved.’ However! Then I found these handcrafted, fused glass bracelets – where the puzzle represents the idea that we each have an essential, unique part to play in the bigger picture. And that – I like a lot.”
Amy Gravino, “For me, I would have fewer reservations about the puzzle piece logo if there were a way to re-imagine the meaning behind it. So rather than it representing a missing piece in individuals on the autism spectrum, I would love for it to represent the ‘key’ piece. The puzzle piece is that component that defines each and every autistic person; that, without that piece, we couldn’t be the fantastic people that we are. So rather than looking at the puzzle and seeing a piece that is missing, I would want to look at the piece as the piece that completes it. (Unfortunately, I think the current meaning behind the puzzle piece is so enshrined in it that it’s probably impossible to change it, but I want to believe there is a way).”
Kathleen Tehrani, “I am in favor of a puzzle piece where the individual is choosing those pieces themselves; e.g., the art work of Sarah Vaughn.”
“I am not in favor of a puzzle piece that holds the intention that people on the spectrum are confused or incomplete,” Kathleen says.
Karen Courtney, who is Autistic, had a symbol she designed tattooed on her arm.
Karen feels the tattoo symbolizes her struggles and being bullied for her autism. Karen is a gifted artist and designs autism puzzle piece tattoos.
Then there were a big group of people who opposed the symbol.
Michael Leventhal, “While the original intent of the puzzle piece was positive, it no longer represents the goals of advocacy. Yesterday autism was a mystery. Today, while efforts continue into autism’s etiology, the main focus is on applying what we have learned to make society and institutions more responsive to changes that lead to improved life and outcomes for autistic individuals and their families. Highlighting this shift in focus warrants a newer symbol – one of cooperation and sharing.”
Michael believes projects such as the Gee Vero Inclusion project go more to educating and reframing autism.
Jane Straus, “the puzzle piece is far more applicable in my opinion to NTs (neurotypicals), who seem to expect us to guess what they are thinking. It is inaccurate, in its assumption of boy-blue, and its assumption that we are so impossible to understand. Those of us who can communicate in a way that normals understand are so simple and direct in what we say, that if they would just pay attention we would be not a puzzle at all.”
Andy Dreisewerd, who lives in a restrictive group home, has no love for the puzzle piece logo. In fact, he performed a ritual to destroy the puzzle piece by “using a plastic prop sword and figuratively driving it through the puzzle piece, cutting it in twaine. I did this to free its influence from me and my attention to others’ opinions on things I should do with my spare time, and the type of job I should hold based on how ‘intelligent’ I am.”
Lori Shayew, “I’m not a fan of the puzzle piece. I feel it’s demeaning to autistic people. I like the infinity sign or heart better . . . something Autism represents.”
Andrew I. Lerner, “We are not just a puzzle PIECE, and are not missing anything. We do fit in, and we can SPEAK for ourselves! Let us support ourselves, rather than an NT jigsaw organization that is profiting from pitying us. We are all individuals, and need not have the same letters in our name. Show support for us by proudly displaying our A.S. logo.” This is the logo he proposes:
April Griffin writes, “My pieces aren’t missing and I’m not a mystery.”
Judy Endow writes in Goodnight Autism Puzzle Pieces about how the puzzle piece is now permanently tied in with fear-based messages. ” . . . the fact remains that today public awareness of autism is tied up with the tragedy and fear-mongering put forth by Autism Speaks. Our puzzle symbol no longer stands for any of the good we personally attach to it and, in fact, has become harmful to the very people we wanted to represent – autistic people.”
Alternative ideas for logos were suggested. Sarah Vaughn would like to see a rainbow in the logo. Corrine Tobias likes the butterfly symbol.
One of my favorite organizations, Hidden Wings, uses a butterfly.
Carol Ann Acorn uses many pictures in her educational presentations that represent autism.
Forward-thinking CarolAnn also created this symbol years ago.
On suggestions for alternate symbols, Joanne Lara, Bev Leroux, and April Dawn Griffin like this symbol.
April likes the rainbow colors for the spectrum and the infinity sign which is math-related. Many on the autism spectrum have an affinity for math-related symbology.
Janet Sebelius disagrees with this symbol. The infinity symbol is used by the Metis in Canada.
“I feel the autism community has the best and brightest minds on the planet bright enough and creative enough to come up with something original I would love to see it come from within and not remind anybody of anybody else.”
Lori Shayew of The Gifts of Autism and Kelly Green of the Autismhwy.com came up with this symbol.
Lori writes “In light of the recent news that the rainbow is not an arc, but a circle. (Thanks for the proof NASA) It’s time to recreate the new model. Colors of the rainbow weaving in motion. We are recognized for all of our colors. For instance, I know a 13 year old girl who is non-verbal (red ray) AND comprehension/writes at high school level in English and Spanish (blue ray) She is also a wiz at math (indigo ray) Because she is non-verbal she is automatically labeled “low functioning”. But, there are hidden gifts that people are missing because they are focusing too much on the “non-verbal” aspect.
It’s time to break down the spectrum (low-mod-high) and allow our innate gifts to bloom and flourish. Don’t we all excel at some things, but not in others? No big deal. We can jump from yellow to red to indigo to green and back again. Maybe then there are no colors, only light.”
Andrea Clark, “As each person in this world is unique, how can one symbol do justice for all?”
James McCue writes, “I hate the missing puzzle piece – I am not missing anything, nor do consider anyone I work with to be less then whole.” James suggests this:
“I think this represents the beautiful chaos that is continually running through my neurology – If I could add motion to it, would be even better – and noises, and smells – but – this will do,” James writes.
Kelly Green states, “Many Allistic [editor note: allistic is a new term for neurotypical] parents like the puzzle piece while many Autistic adults dislike it. I’m trying to honor my Autistic friends. I have existing art with puzzle pieces, which I still use minimally (in my Making Friends with Autism coloring books and coloring pages.) I made a promise to my friends that I wouldn’t create any new puzzle piece imagery over a year ago.”
This was a chalk-art piece Kelly Green created to represent Autistic Pride.
On the side of getting rid of any symbol representing autism Judith Burkes weighs in: “I don’t believe there can be a unifying symbol for a spectrum. If some see it now as one color or another, or a variety of colors, or as limited and separating or unifying and celebrating, how can one symbol cover such a variety of expressions of human existence? And, in the end, do we need to have a/one symbol?”
Oya Dee Gazioglu, “Could a symbol also be construed by others as another limiting label? Or another separation as opposed to the oneness we actually are?”
Marilyn Lauer, a Special Educator in Santa Barbara, asks, “Why a symbol? Does every ‘disability’ have a symbol?”
Some thoughtful organizations are investing in new logo designs. For example, The Celebrate Autism Foundation changed their logo to this.
Jenny Anderson, founder of Celebrate Autism, states “Celebrate Autism Foundation changed it’s logo from a puzzle piece to a spark. Our organization is about empowering through education & sparking a brighter future for people on the spectrum. Feels like a much better fit!”
In the end, I believe symbols are important, just as words are. The symbol we choose to represent ourselves should reflect our values.
The puzzle piece was created to represent an autism organization, not Autistic people. The Autistic Self Advocacy Network which does reflect the values of many autistic people has chosen this symbol as their logo.
The fifteen-year old artist Rissa P chalked this at the Covina Autism Chalk Festival on April 18, 2015
I guess that says it all.
See also the controversy over which colors represent autism. Blue, a color associated with males, has been chosen by Autism Speaks as the color for autism. But this is not set in stone. Many people think rainbow or gold represents autism better.
Because of it’s history the Art of Autism nonprofit does not use the puzzle piece in it’s logo or promotions.
A Life Worth Living has copied the content of this article under fair use in order to preserve as a post in our resource library for preservation in accessible format. Explicit permission pending.
Link to Original Article: https://the-art-of-autism.com/the-autism-puzzle-piece-a-symbol-of-what/