Goodnight Autism Puzzle Pieces

Goodnight Autism Puzzle Pieces by Judy Endow on Ollibean. Picture of crescent moon on night sky.You may like lighting it up blue or using puzzle pieces as a symbol of autism awareness.

I personally no longer like either of these things for lots of reasons and I post various blogs and articles about these topics in social media venues.

My opinion, even though it may differ from yours, does NOT mean my autism is preventing me from understanding your point of view. It simply means we have different points of view.

Yesterday I had a conversation in social media with a woman who explained all the reasons the puzzle piece symbolism was important to her while I explained all the reasons I no longer like this symbol. It was a very civil discussion until the end when she said, “I’m sorry your autism doesn’t allow you to see my point of view. I will be praying for you. Have a nice evening.” It is only April 3rd and I have already had more than enough of these sorts of conversations.

The truth of the matter is that it really does not matter in 2014 whether we like the puzzle piece symbol for autism or not. It is no longer about personal preference. It also does not matter what the original historic purpose or what any organization’s current intent is for using the puzzle piece. All of these things used to matter, but in 2014, we have a different landscape.

At this point in time because a very good job has been done over the years with autism awareness campaigns we have a new problem. The problem is that one organization gets almost all the autism contributions which in turn means this organization (Autism Speaks) has been able to purchase the most advertising. In fact, in many communities the only public advertising comes from Autism Speaks. This means that Autism Speaks awareness campaigns about autism have become the public perception of autism.

Public Awareness and Autism Puzzle Pieces

Because the puzzle piece is connected with autism, public awareness kicks in when we see the puzzle piece symbol for autism. Regardless the historical or the current facts about the puzzle piece or indeed even our own association and good feelings with the puzzle piece it is important we understand what the puzzle piece has come to mean.

If you want to understand public awareness of autism in 2014 go to a street corner of a busy intersection where you interface with the general public. Start asking John Q. Public to tell you one thing they are aware of about autism. Here are some answers you will get:

  • It bankrupts families.
  • Kids are ok, but when they grow up they should be put away. Too many of them turn out to be shooters. They have no morals or conscience. The rest of us shouldn’t have to live in fear of them.
  • Those kids need to be put on a leash or locked in so they don’t run off and drown. Why don’t their parents watch them better?
  • Autism is my worst fear. I don’t think I could handle it if my baby had autism.
  • So many people have it – it is all so tragic.
  •  It’s a mystery. Nobody seems to know what to do about it.
  • I think society should have a more Christian attitude about autism. Those unfortunate souls can’t help it. They don’t want to have autism and there is no cure so what are they supposed to do?
  • Autism is a good cause. My neighbor had a team for his kid and our family went on that walk to show support. We gave a big donation.
  • Wish they could find a way to test for it prenatally. It is a shame autistic kids are brought into the world.
  • My insurance premiums are already too high and keep going up. I have to bear the burden of somebody else’s autistic kid. We need a way to prevent this cycle of poor people having autistic kids the rest of us have to pay for.
  • Parents are so overwhelmed. I understand why some of them snap and put their poor kids out of their misery.
  • Nobody really knows anything about autism. It’s a puzzle.
  • I love the blue lights! Go blue!
  • I would not subject my family to that kind of thing. If we can’t cure it then we should be merciful and do the Dr. Kevorkian thing. Parents and siblings shouldn’t have to suffer and give up everything for one child afflicted with autism – and those kids aren’t really aware anyway. They don’t have feelings as the rest of us.
  • My workplace did autism for our charity last year. It is such a worthy cause!
  • Many of us in the autism community have worked very hard on awareness campaigns over the years. For many of us our campaigns were about education, earlier detection, support programs, etc. Even so, 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.

I no longer use my beautiful quilted puzzle bag I bought long ago at my first autism conference. Today I look fondly at my old white sneakers sporting their muddied autism puzzle shoe laces and remember the day Lori and I served over a thousand brats and hot dogs to the autism walkers – how sore our feet were and how exhausted we were at the end of the day, and yet how pleased we were to have helped a good cause.

That was then. Today it is 2014. Our yesterdays can be fond memories. Our todays must come with the realization of the negative message about autism the general public now associates with the puzzle piece. Any positive programming on behalf of supporting autistics is undermined by use of the puzzle piece logo. In fact, it will be boycotted by autistics – the very people you are trying to serve. All your good explanations about what the puzzle piece means to you will not undo the public perception now associated with the autism puzzle piece.

I have explained to the best of my ability why I have put my puzzle piece items to rest. Their time is over; their usefulness spent. If you cannot understand my explanation perhaps the words of my dear friend and treasured ally will serve you better:

Lee Stickle: “Out of respect for autistics who have asked that the puzzle piece not be used, I will not use it. While I admit I do not understand all the nuances of ASD, I do recognized and respect those who advocate for themselves and others.”

 

Say no to autism puzzle pieces. A yellow, red, royal blue and turquoise connected puzzle pieces a red outline of a circle with diagonal bar symbolizing" No Puzzle"Autism Puzzle Pieces

About the Author:

Judy Endow, MSW is an author, artist, and international speaker on a variety of autism-related topics. The award winning Paper Words, Discovering and Living with My Autism ,  Learning the Hidden Curriculum: The Odyssey of One Autistic AdultPaper Words, and many other wonderful books can be found on her website JudyEndow.com.

34 Comments

  1. Derek May 2, 2017 at 11:39 am - Reply

    I am sorry but I am very confused about this article and the justification against the puzzle piece. I am not going to sit here and say you are wrong. But I think more clarification is needed. But what I took away from this article is that the puzzle piece has become more of a marketing tool and barely brings the proper awareness of Autism to the general public. If that is your stance then I understand. But how does to puzzle piece create the misperception when the misperception alone is solely on the ignorance of the public itself. Sure I agree that more awareness needs to be worked on by the organization and using it to market products is morally questionable and questions the intentions of the organization. But I doubt that the puzzle piece alone narrates all the negative connotations you’ve listed. People will believe what they believe just like that woman you spoke to stood by her own convictions regardless of differing viewpoints. But I think what bothers you more is the organizations lack of effort to bring better public awareness. The better question is how do we change that. Do you think boycotting the symbol will accomplish your goals?

  2. Al March 12, 2017 at 5:54 pm - Reply

    I’m about to say something very selfish, but I want to preface it with a thought or two. I teach special education and have many autistic students. First, I have absolutely no concept of what it must be like to raise an autistic child or be autistic. I work with my students for eight hours, take a lunch break, and go home. This is easy compared to parenting and raising a child.
    Someone in a prior comment said “If anything, the NT world could be represented by a puzzle piece, seeing as that’s the side of the world that expects others to fit in so closely like clockwork.” This is so deeply true.
    Now for my selfish comment: I am so blessed to have my autistic students. Through them I have learned to communicate differently. Through them I have learned to be silent in my communication. Through them I continue to learn what it means to allow another to be different and see the kaleidoscope of colors of the human soul. I have been the beneficiary of my autistic students. The NT world only sees it as a puzzle piece because we don’t want to change. Why is it that so many people expect others to speak their language? With my autistic students, I try to learn their silence, and once I’ve learned their silence, there is no puzzle. We dance.

  3. […] I am fed up with your puzzle pieces, which have a history before Autism Speaks took them over. Learn our history (I am imperfect myself and am still learning our history. I’m always learning. It’s part of being. Learning is good. Please learn. We cannot change and grow if we don’t grow). […]

  4. Robert Gehrman March 12, 2016 at 2:12 am - Reply

    You didn’t explain much about your aversion to the puzzle piece, Judy. Please expand the article! I hate the puzzle piece and here is why:
    I’m Autistic. I’m not a “person with Autism” as if it were something inside and seperate from every thing about me. I’m not a puzzle to be solved. I’m not missing any pieces. If anything, the NT world could be represented by a puzzle piece, seeing as that’s the side of the world that expects others to fit in so closely like clockwork. But then again doing that might be seen as abrasive to NT’s– after all, they’re just being themselves too <3

  5. […] Goodnight Autism Puzzle Pieces […]

  6. […] an in-depth explanation of her position on the subject, read Judy Endow’s essay, “Goodnight Autism Puzzle Pieces,” on the Olliebean.com blog […]

  7. […] an explanation of her position on the subject, read Judy Endow’s essay, “Goodnight Autism Puzzle Pieces,” on the Olliebean.com blog […]

  8. […] are so many issues that Neurodiversity advocates and medical model supporters disagree on, from the puzzle piece symbol, to the ethics of certain therapies. And sometimes, it gets […]

  9. […] Endow writes in Goodnight Autism Puzzle Pieces about how the puzzle piece is now permanently tied in with fear-based messages. “… the […]

  10. […] for themselves whether they want to take back the puzzle symbolism, or refuse it because it’s been tainted by organisations that do not speak for us. We could let the puzzle piece divide the community, or we could accept that it’s still a […]

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