72 Think Piece: “It’s Time to Trash the Puzzle Piece: A Story of Autism and Symbolism”

Madison Hughes

Dr. Esther Houghtaling

ENG 1023.XX

13 Feb. 2022

Cover Letter

I feel the Think Piece is a fascinating type of writing. Reading the Teller and Hesse articles, I discovered some key features that I think all think pieces should contain. Number one, Think Pieces should start with a bit of personal narrative to help hook the reader. Number two, the paper should explain the problem and show two sides of the debated problem that it is trying to solve. Number three, the paper should contain an advice section where the author suggests ways to solve the problem.

Overall I would say a Think Piece is less about convincing the reader of your point and more about starting a conversation. With that in mind, I aimed to write my Think Piece in a way that hit all the key points needed for it to qualify as a think piece and for it to start a conversation.

I started my paper with a bit of self-narrative, talking about how I was first exposed to the puzzle piece, which is the key focus of my entire paper. Later on, I went into the history behind the puzzle piece and its use. Closer to the end of my paper, I wrote about how people with autism feel about the puzzle piece. At this point, I’d like to state why I didn’t put a whole lot of my personal opinion about the puzzle piece into the paper. I did this because I am not someone with autism. I am the younger sister to someone with autism, but I do not have autism, so I felt that adding my personal feelings on the puzzle piece would be unhelpful. I mentioned a few times in the paper how people with autism are left out of the conversation around what is best for them, so I didn’t want to add in my personal feelings and leave out the feelings of people with autism.

This leads to the explanation of my next major choice with the paper; adding quotes from people with autism. I know it’s not typical of a Think Piece to add a section of quotes, but I felt it benefited my point. I aimed to get across how the puzzle affected people with autism, and what better way to do that than to quote people with autism. I also felt that doing this helped show that I genuinely do care about giving people with autism a voice.

To end off the paper, I added some advice. To be completely frank, I struggled with what kind of advice to give. I teetered back-and-forth with two ideas. One was that I should give advice on what is best in autism advocacy. The other was that I should give advice on things to use instead of the puzzle piece. Both I felt would be a decent way to close the paper. However, I settled on a kind of middle ground in the end. I gave advice for people starting to get involved in autism activism.

I did this because I felt that if I was to publish this paper and not just submit it for a class, I would be publishing it to an audience of people who were semi-unaware of the history of autism activism. I felt that my paper wasn’t geared towards people who were highly engaged in autism activism but more towards people on the outskirts, parents whose kids just got diagnosed with autism, or people who are friends with autistic individuals. Therefore, I geared my advice towards guidance for people just starting to get involved with autism activism.

It’s Time to Trash the Puzzle Piece:
A Story of Autism and Symbolism

At 14 I found myself scrolling through YouTube when I stumbled upon a video called “I Am Autism” from an organization called Autism Speaks. Of course, being the younger sister to a brother with autism, such a bold title piqued my curiosity. So I clicked it. In the words of my 14-year-old self to my mother, “It was one of the worst things I’ve ever seen!”

The video talked about how autism ruined families, ended marriages, and was worse than cancer. At the time, I understood that autism was a scary diagnosis, but I also knew that it wasn’t the end of the world. After all, my brother hadn’t torn apart any marriages or destroyed a family. Later because of that video, I looked more into autism activism and noticed one symbol constantly used: a puzzle piece.

The puzzle piece was first used by the United Kingdom organization, the National Autistic Society, in 1963. This original puzzle piece was created by Gerald Gasson, a board member of the society. The organization was known to believe that autistic people suffered from a “puzzling” condition. With this in mind, they adopted a puzzle piece logo with a weeping child in the center, displaying the notion that autism was a tragic disease that children suffered from.

Later in 1999, the Autism Society of America created the puzzle piece ribbon to symbolize autism awareness. The Autism Society stated that the puzzle piece pattern on the ribbon represents the complexity of the autism spectrum. The different colors and shapes are intended to represent the diversity of people with autism. To directly quote the foundation, “The brightness of the ribbon signals hope—hope that through increased awareness of autism, and early intervention and access to appropriate services/supports, people with autism will lead full lives able to interact with the world on their own terms.” It should be noted that in this context the statement “increased awareness of autism, and through early intervention” typically meant putting research and money into finding a cure and treatment for autism. The standard treatment used at this time would have been Applied Behavioral Analysis therapy, which aims to change and eliminate what was seen as autistic behavior by forcing individuals to hide their autism.

In today’s society, the most recognized use of the puzzle piece, and the one I first saw, is utilized by the organization Autism Speaks. They are also credited with popularizing the use of the symbol. When the organization was founded in 2005, it began using a puzzle-piece logo to spread awareness for autism. You can go to their website today and see the puzzle-piece symbol being used as their logo. Autism Speaks said in a statement, that the blue puzzle piece “Represents the search for answers that will lead to greater understanding and acceptance of people on the autism spectrum, their diverse challenges, abilities, and strengths.” I would like to point out now that it is widely understood that “search for answers ” refers to a search for cures and treatments for autism similar to Applied Behavioral Analysis mentioned above.

As stated in my opening paragraph, the puzzle-piece symbol is used frequently by many organizations, but the more I spoke with people who have autism and who worked in advocacy for autism, I realized that the puzzle-piece symbol was at best controversial and at worst downright disrespectful. There are numerous reasons why someone with autism would dislike the symbol one of which is that the puzzle ribbon infantilizes autism. Puzzles are often games designed for young children, and using a puzzle piece as a symbol for autism presents the idea to people that autism is solely a childhood condition that doesn’t affect adults. This idea creates a world in which people with autism only exist from age 0 to 17, and once they turn 18, they disappear in people’s minds. My brother is a 23-year-old man with autism. His autism didn’t magically disappear when he turned 18.

The ironic thing is that adults with autism are the exact people whom we should be asking on how to help younger people with autism. They know what it’s like to be a young person with autism, and now they’re experiencing adulthood as someone with autism, and their thoughts and feelings, and ideas should be taken into account. But autistic adults often are excluded from the conversation. Even professionals acknowledge this fact. Kevin Stoddart, director of the Redpath Centre in Toronto, a Mental Health Organization specializing in ASD treatments at all ages, states, “We’ve excluded people with autism consistently from conversations about research and provision of services.”

Another reason people with autism dislike the puzzle-piece symbol is for what a puzzle piece insinuates. A puzzle piece is a part of something unfinished, and a puzzle piece by itself means that the puzzle is incomplete. This implies that people with autism are somehow incomplete people. How would you like for the symbol people used to recognize your situation to be something that references you being incomplete as a person? I imagine you might feel rather ashamed of that symbol and of your situation. I can say from my own experience my brother is not at all an incomplete person, and in no way does anything about him need to be fixed. He acts differently and sees the world in a way that is different from me, but that doesn’t make him incomplete or wrong, it just makes him different. The world is full of different people’s differences, which is what makes the world such a colorful place. If everyone on earth liked brown houses, every house would be brown, and we would lose the uniqueness of homes.

The final reason that I’d like to point out as to why people with autism dislike the puzzle piece symbol is that it’s highly associated with the group Autism Speaks. Earlier I spoke a little about the group, but I’d like to go more in-depth with their controversial nature. In 2006, Autism Speaks began a campaign for autism awareness. In doing this, they ran a variety of advertisements on TV, later archived to YouTube where I found them, and they even created a short film about autism. The short film featured the organization’s leader speaking on how she had a desire to kill herself and her autistic daughter by driving off of a bridge. She spoke of these urges while her daughter was in the room and could hear what she was saying. As you can imagine, many people with autism and without were horrified. Since when has it been okay to sit in a room and tell other people how you wish to end the life of your kid with them sitting right next to you?

The advertisement I referenced at the beginning of this paper, “I Am Autism,” can still be found on YouTube, features a disembodied voice similar to the ones you’d find anti-drug campaign speaking about how autism ruins families and to directly quote the ad, “I (autism) work very quickly I work faster than pediatric AIDS, cancer, and diabetes combined and if you are happily married I will make sure your marriage fails your money will fall into my hands and I will bankrupt you for my own self-gain.” It is because of this many people with autism find the puzzle piece to be something they do not wish to represent them as it’s so deeply tied into Autism Speaks.

I want to take this time to give voices to people with autism, so I’ve included some quotes from people with autism gathered in an article called “The Autism Puzzle Piece: A Symbol That is Going to Stay or Go?” on the website called The Art of Autism. The article was written by Debra Muzikar, and these quotes were gathered from her friends on Facebook, and I highly encourage anyone reading this paper to go read her original article.

• Lori Shaw: “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.”
• 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.”
• 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.”

From my lifelong experience learning from people with autism, including my brother, many friends, teachers, older adults, and from the research I’ve done for this paper specifically, I feel it’s safe to say many people with autism feel the puzzle piece represents negativity about autism and not the positive perspective of acceptance and understanding that autism deserves.

There are a few pieces of advice I would like to offer for anyone getting involved with autism awareness. These are pieces of advice that have been given to me throughout the years, and I hope they can serve as a gentle guide to help get rid of the puzzle piece and usher in the new age of understanding and acceptance over a search for a cure.

Don’t use the puzzle piece: I feel this one’s rather self-explanatory. Simply don’t use the puzzle piece. This piece of advice goes to those of us who don’t have autism due to its history and the way it makes many who are autistic feel it’s best to simply steer clear of something that could cause someone discomfort.

Spend time with people who have autism: If you’re trying to advocate for a group, you need to be well immersed in said group. You’ve got to understand their struggles, not just read about them online. The more time you spend with people who have autism, the more you further the goal of acceptance.

Ask people with autism: Specifically, ask adults who have autism what could help them or what could’ve helped them when they were younger. There is no one better in the world to tell you what needs to be done for autistic people than autistic people.

Step back: I think this one is perhaps the most important. No matter how badly you want to fight and scream and shout for autistic people to be accepted, often the best thing for you to do is step back and allow people with autism to speak for themselves. People have said horrible things to my brother, and instead of letting him speak for himself, I robbed him of that opportunity. In my rush to be an advocate, I stopped his own self advocating. Over time, I’ve learned that it is often better to allow people with autism to speak for themselves and amplify their words to further spread what they are saying.

Author Bio:

Madison Hughes is the younger sister to an epic young man named Taylor Moffatt.

Work Cited

Autism Speaks. “About Us.” Autism Speaks, Autism Speaks, https://www.autismspeaks.org/about-us.

Coffey , Richard. “The Problem with the Autism Puzzle Piece.” The Mighty, The Mighty, 28 Mar. 2021, https://themighty.com/2021/03/autism-puzzle-piece-problem/.

Crosman, Cassandra. “The ABLEIST History of the Puzzle Piece Symbol for Autism.” In the Loop About Neurodiversity, IN THE LOOP ABOUT NEURODIVERSITY, 1 Dec. 2019, https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece- symbol-for-autism/.

Muzikar, Debra. “The Autism Puzzle Piece: A Symbol That’s Going to Stay or Go?” The Art of Autism, The Art of Autism, 27 Sept. 2020, https://the-art-of-autism.com/the-autism-puzzle-piece-a-symbol-of-what/.

“Autism Every Day.” YouTube, uploaded by MilestoneVideoNY, 5 Apr. 2011, https://www.youtube.com/watch?v=O0vCz2KWMM0.