The debate
In the attempts to tackle an extremely important on going debate to provide information on where things came to be, we present you with the puzzle piece vs the infinity symbol.
This topic being one of the most controversial topics involving the Autism Spectrum to date, we felt it was a very important one to discuss and to include everyone involved. Being a part of the community trying to advocate for the Autism Spectrum we feel it is very crucial to weigh in on this topic, the details behind it, where everything was developed, where things went wildly astray and where we are today. This blog is not about our opinions in any way on either of the symbols. It is to lay out what we have witnessed within the symbols and the community over the last 15 plus years of time. We would love to hear every person’s opinion on the topic, and we know this may get very wild. All we ask is that you read the article fully and with an open mind, let it all digest and then politely give your personal feelings towards the matter. We encounter this topic almost daily and we seem to always encounter individuals not knowing much information on the topic, just what they have been told. Understandable because this is what most do. In a way this blog may feel the same way. We will do our best to lay out information from a non biased perspective and from both sides to open up the conversation with the most respect we could possibly give to all parties involved. Again, we understand the heavy emotions that are involved in the topic. We completely respect all parties and their opinions. We are not trying to convince anyone one way or another towards either symbol and its meanings to you. We feel it is important to discuss the facts and misconceptions that have come into play over the last 31 years or so. Let us begin.
From https://www.autism-society.org/ .
The puzzle ribbon was adopted in 1999 as the universal sign of autism awareness. Although this image is a trademark of the Autism Society, the organization has granted use to other non-profit organizations in order to demonstrate unity and advance a universal mission as opposed to any individually held interests or promotion of a single organization.
The Autism Awareness Ribbon. 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.
The Autism Awareness Puzzle Ribbon is the most enduring and recognized symbol of the autism community in the world. Yet, views about the iconic marker are as diverse and wide-ranging as the spectrum it represents.
The Autism Society posed this question on Facebook – the answers were intriguing, we’ve provided just a sampling.
“What does the puzzle ribbon mean to you?
That I am not alone.
That I am part of the great puzzle of life.
It means that I am a major confusion to people and stand no chance to ever fit in.
Multiple meanings…The condition itself is a puzzle which needs to be addressed on many fronts to completion; and that persons with this condition are puzzled by our “normal” ; and we as parents, siblings, family, friends, teachers/therapists, and the general public are presented with the puzzle of how to understand & work with each autistic individual to empower them to be as independently functioning as possible.
To me, it simply means autism awareness, just like a pink ribbon on a shirt- breast cancer awareness; a yellow ribbon around a tree- “bring my soldier home”; a wooden cutout of a stork, on a front lawn, with a blue ribbon- “it’s a boy”; a rainbow sticker on the back window of a car- gay pride….everyone knows what the autism awareness symbol is, regardless of their knowledge of autism. They see it & they think about autism, & isn’t that the point. If we suddenly put a green ribbon on that stork, because someone decides that blue is offensive, it will be a VERY long time before everyone gets that memo, & even longer before it becomes instinctive. Could someone have come up with a better ribbon? Maybe, but I personally think that it’s a beautiful symbol, because the fact is, the autistic world is a puzzle to us, & ours is puzzling to them, & how beautiful it would be if with enough acceptance and understanding our puzzling world’s could come together and fit perfectly. I know in my life, that I see a few more pieces fall into place every day; not just for my child, but for myself as well. There are very often things that are “puzzling” to me, things that I just can’t wrap my head around, that I suddenly “get”, and that piece just falls into place, & fits so perfectly, that it makes absolute sense. So much sense in fact, that it’s much more logical & simplified than “our” way. That’s just my view, I can see others as well,…
It means nothing to me, but more importantly it means nothing to my son. Autism may have seemed a bit “puzzling” at the beginning but now the only puzzle pieces we are concerned about are the ones that disappear under the stove.
….So really, the puzzle piece is nothing more than mirror into the person you are talking to. My hope is that conversations about autism shift from how other people don’t understand us(mystery of autism), to how *both* autistic people and non-autistic misunderstand each other. And how we can develop mutual respect for our differences, for multiple ways of communicating, and an understanding that perspective does not equal wrong. Or right.
I don’t like the symbol of the puzzle or blue lights. They remind me of loneliness, sadness (blue), and isolation (missing piece). I know that’s not what it’s supposed to mean. They just don’t make me or my son feel hopeful, understood, special, belonging. Autism is just really hard.
That even though we’re all different, we all belong and are needed.
That I am not alone and that I am unique due to my Autism. I am proud to have Autism!
The puzzle piece goes back even further than the adoption and rights to it from the Autism Society. The HHS Public Access website has traced the imagery all the way back to 1963. “Common lore traces the use of puzzle pieces to represent autism to the United Kingdom. In 1963, the logo of a weeping child superimposed on a puzzle piece was created by a (non-autistic) parent-member of the National Autistic Society. Another (non-autistic) parent-member later related that “the puzzle piece is so effective because it tells us something about autism: Our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’” (National Autistic Society, 2007).
In all accounts up to about 2008 from our digging, the puzzle piece never represented the individual on the spectrum being a puzzle. It was actually not referring to the individual on the spectrum at all. Instead it was referring to the non-autistic individuals not having an understanding of what was going on with the individuals on the spectrum. The puzzle piece was used because they were puzzled as to help or cure these individuals that were on the spectrum. Therefore the real puzzle piece is representing the non-autistic individual and their inability to come up with answers. Which we still struggle with today and continue to add new “disorders” to the Autism Spectrum umbrella.
Starting in roughly 2008, articles started circulating heavily against the puzzle piece, referencing the it symbolizes that individuals with autism are puzzling. In 2011 and article was published in the English Journals that stated, “Puzzle pieces … symbolize so much of what is wrong with popular autism discourse—representing autistic people as puzzling, mysterious, less-than-human entities who are “short a few cognitive pieces,” who are utterly self-contained, disconnected, and [who] need to “fit in”. (Heilker and Yergeau, 2011: 494). This article was in response to a publication put out by the power house Autism Speaks where they inadvertently made a comment that led individuals on the spectrum to believe that they were in fact the puzzle that the puzzle piece represents. Being one of the largest organizations representing the autism spectrum it sent many people into an uproar because in many people’s view Autism Speaks was the main source for information. It really put Autism Speaks in a tough situation and lost them a ton of respect in the community.
Today there are many anti-puzzle piece organizations that still feed off of the Autism Speaks mistakes made during major television campaigns and articles from roughly 2005 to 2008. From our research one of our favorites and most true articles comes from https://www.altogetherautism.org.nz/ . In this article Paula Jessop writes,
“Many autistic people strongly dislike the puzzle piece as a symbol for autism.
THE PUZZLE piece as a symbol for autism was originally used by the National Autism Society in UK in 1963. Time went by and it was used to represent autism by an organization in America, Autism Speaks.
Autism Speaks then went on to use the puzzle piece in very big Autism Awareness campaigns in America, leading to the puzzle piece being adopted as ‘the symbol’ for autism.
But the problem for many autistic people, is that Autism Speaks campaigns were particularly negative and problematic to autistic people.
Autism awareness campaigns historically have been modelled on campaigns to raise awareness of diseases, illnesses like cancer. Early autism awareness promotion was based on organizations and parents’ belief that autism is a disease. A tragic and terrible one.
Autism Speaks was the biggest organization to approach autism awareness from this perspective that autism is a disease requiring fixing or curing. Therefore, their campaigns were the most hurtful, upsetting and offensive to autistic people.
In 2006, as part of Autism Speaks campaigning for Autism Awareness, the organization ran a range of advertisements on television and created a short film about autism that featured the organization’s leader at the time talking about her desire to kill herself and her autistic daughter, via driving off a bridge.
She spoke of these urges in the film, while her daughter was in the room and could hear what she was saying. Autistic people continue to be horrified there was ever a time it was seemingly socially acceptable for people to discuss killing us while we listened.
Another advertisement featured comments that autism ruined families and was almost a curse to families.
Their campaigning held a lot of very negative ideas about autism, that autistic people found very offensive and unfair.
So, due to this, and a whole range of other issues with Autism Speaks, autistic people find the puzzle piece a reminder of an organization that spent years running very public campaigns in America that framed autism as a tragic disease. To autistic people, the puzzle piece represents negativity about autism, not a positive perspective of autism.
A second issue for autistic people, is the puzzle piece also represents viewing us as ‘puzzling’ or a ‘mystery’. Often terms used in the past referring to autism. For autistic people this is problematic, as we don’t wish to be viewed as akin to a puzzle that can’t be worked out.
Autistic people tend to use a rainbow infinity symbol, as connected to the neurodiversity perspective. For autistic people, if they see an organization or parents using the puzzle piece, and they know the history of the puzzle piece, they will assume an organization does not consult with actual autistic people and may find that problematic. Or they may assume an organization disregards their feelings towards the symbol and find that very disrespectful.
Autistic people on the whole, desire a shift in perspective of what autism awareness is about.
For many years adults have openly, publicly discussed their desires for autism awareness to shift to an approach aimed at creating acceptance for us in society. Continuing to ignore our wishes, to use symbols which may remind us of our discrimination in society or that people sometimes do kill us because of our autism, IS disrespectful.
Words and symbols might not seem to mean much, but they represent a perspective which increases discrimination against us in society. It’s time to shift to autism awareness, as well as throwing away symbols from an era gone by that was not kind to autistic people.”
This article and response rings very true to many individuals on the spectrum and we respect this perspective to its fullest. Paula is correct on so many levels, but is it the full perspective? Is the underlying issue with the imagery itself or an organizations misguided views that used the imagery? Is she taking one perspective and enclosing it as an all inclusive perspective? Is the imagery being misconstrued in the polar opposite manner like it was by Autism Speaks and is this solution any better? Is the discrimination housed in the imagery or is placing the factor of the imagery as a part of it giving small minded individuals an excuse as to why they are small minded?
The list of questions can go on and on in both directions and these are just food for thought. Words and symbols mean a lot in our society, but it is the power that individuals place on these words and symbols which take them to the places that they go. There can be a million explanations for one symbol and how it effects a person. Is it the symbol itself that is the cause of this or is the power of the people behind a symbol on either end that leads to its controversy in both directions? The topic of Awareness vs Acceptance was brought to light in Paula’s article. Both need to be accomplished but both are very different. Could it be possible that the different symbols used could represent both sides of the debate in unison if the true meanings are explained for the way they were intended? Is it possible that the puzzle piece (the most recognized symbol across the planet) could represent the mind of the non-autistic individual as it was intended to bring awareness to the non-autistic community to usher in the acceptance of the individuals on the Autism Spectrum as one in the same, as a non-autistic person, and a critical part of our society. And from there show your true acceptance with the infinity rainbow as it seems to have been intended. Two symbols thriving in unison which means two very different things, but without one the other could not happen. Does doing so show that we as individuals are bringing in a new and not disregarding the past regardless of the turmoil or happiness it holds?
Now it is time for you to express your views on the topic if you wish. We know this article is not going to solve the debate by any matter. But we are trying to open the eyes to all involved and to push forward as much truths that we can. Through truths on all sides is the only way absolute acceptance can be found.