Written in English: Goodnight Autism Puzzle Pieces
http://www.judyendow.com/advocacy/goodnight-autism-puzzle-pieces/

French Translation: Adieu à la pièce de casse-tête pour l’autisme http://www.judyendow.com/french-blogs/adieu-a-la-piece-de-casse-tete-pour-lautisme/

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 2015 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 2015, 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.

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 2015 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 2015. 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 recognize and respect those who advocate for themselves and others.”

Originally written for and published by Ollibean on April 4, 2014