Is there a right way?
Last year, in the beginning panic of the pandemic, I read a Facebook post by a mom whose child had just been diagnosed with autism. She was asking how it was “appropriate” to celebrate Autism Awareness Month. As so many of us do, she had researched her child’s condition online, and was inundated with information. She was accepting their diagnosis, and wanted to raise awareness, but didn’t know how. And as I read it, I remember thinking, “Bless her heart.” With all that she was dealing with, this was one more thing.
The puzzle piece is perhaps the most well-known image associated with autism. Here’s a quick history:
The puzzle piece logo was created in 1963 by Gerald Gasson, a parent and board member of The Society for Autistic Children in London. He and the board believed that children with autism suffered from a “puzzling condition”, and they included the image of a weeping child to show the tragedy of their suffering.
In 1999, the Autism Society of America created the puzzle piece ribbon as their symbol of autism
awareness. Their belief is that “The puzzle pattern reflects the complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope — hope that through increased awareness of autism, and through early intervention and access to appropriate services/supports, people with autism will lead full lives able to interact with the world on the own terms.”
In 2005, Autism Speaks was founded, and they quickly adopted the puzzle piece in the blue color, and launched their “Light It Up Blue” campaign. “Light It Up Blue” is observed annually on April 2nd, when homes and iconic landmarks are lit with blue lights for Autism Awareness Day. It is perhaps the most prolific autism awareness campaign in the US and worldwide.
In the past ten years, the puzzle piece has been the center of a growing debate around autism. Due to its history, many autistic adults reject it. Its origin symbolizes that autism is something to be sad about. Some feel that it is babyish and the primary colors lead to the misperception that autism is for childhood, not a lifetime. Some feel that it portrays people with autism as incomplete, or missing pieces to life. Many feel that Autism Speaks has made too many mistakes in the past, and that the blue color doesn’t represent the females on the spectrum. There is a push to replace the puzzle piece with the infinity loop. The feeling is that the infinity loop better represents the neurodiversity of those on the spectrum.
To me, the puzzle piece has always been the perfect symbol for my son John. He’s now 11, and has been nonverbal so far. He has behaviors and interests that are very different, and yes, sometimes puzzling. I’ve always thought of John as a many piece puzzle, and how we have to move the pieces around in different directions, even spin them sometimes, to help him complete his picture- just like a real puzzle. I also like to think of all the people in his world as part of his puzzle – his parents, grandmother, therapists, teachers, and friends. We all fit together because we love him and we want to be part of his world. And I'll be honest, I love the fact that if we're in public, and he's wearing a shirt with a puzzle piece on it, people tend to be a bit more understanding.
To bring it back around, I replied to that mom’s post by telling her that there is no one way to celebrate autism. Take the time to learn the history, and if your child can communicate his/her opinion, please ask them and follow their lead. If not, then you make the decision you are most comfortable with. You want to rock the puzzle piece, go for it. You want to “Light It Up Blue”, please do. If you love the spectrum symbol to infinity and beyond, do that. But no matter what you do, continue to raise awareness, promote acceptance, and fight for equality for those with autism, this month and always.