Unless you’ve been living in a cave for the last couple of years, you likely have seen the puzzle piece that has become the predominant symbol of autism.
I’ll just come out and say it bluntly: I hate it.
If someone thought a puzzle piece was an accurate representation of me, I’d be pretty ticked off to put it mildly.
Admittedly part of it may be that the over-commercialization of it has become as bad as the Christmas season. Autism Speaks has once again discovered a way to jump the big swimming fish by offering us silver puzzle cufflinks in a “lovely black gift box”, helpfully categorized under “Glamourous Gifts” in their store. I think I just threw up in my mouth a little. Perhaps I could hurl in the Autism Camo Baseball Cap or the Logo Etched Champagne Flutes instead…
[Hint to Mary - This is not what I want for Christmas.]
I’ve been pondering this for months and am beginning to have a clearer way of expressing why this bugs me so much. Perhaps it’s because I think the puzzle piece symbol is all about us (parents, family, friends, medical professionals, educators, researchers, etc.) and not at all about people who are autistic. I’m really starting to question whether this is not a symbol of autism but instead a symbol of our own fears and uncertainties. I wonder if we’re the ones with the missing puzzle piece and whether we’ll ever feel at peace with ourselves until we figure out where to look.
The rebellion against the puzzle piece is swelling. I have no talent for coming up with this sort of thing on my own, though I tend to know what I like. My hope is that support someday coalesces behind a much better alternative. In the meantime, the multitude of great ideas out there are incredibly creative.
Mother of Shrek has a great post about the evolution of symbols and logos with many sample ideas. I’m already fond of The National Autistic Society’s updated logo. It’s infinitely more positive and inclusive to me.
I hunted around for some more and found this one done by Bob King at GraphicTruth.com. I think it’s pretty slick just in its own right, but even more than that, it’s a powerful statement.
Which leads me to a little suggestion. How about all autism-related organizations commit to having their logos designed or redesigned by someone who is autistic?
Feel free to use the comments area to link to other logos and symbols you like. And feel free to use it to flame me too if you feel the need to. I welcome all feedback. 
Posts that hopefully are similar:
- What Blogging for a Year Has Taught Us
- Happy World Autism Awareness Day!
- Do It Yourself at Do2Learn
- Autism Speaks – Salaries Gone Wild?
- Toner for Autism?
- And Now We Will Hold You To It
- We’re All Afraid
{ 8 comments… read them below or add one }
Hi Tim,
Just read your blog above and it’s very timely on my part to find it today. My best friend’s son is autistic and we’re putting on an autism fundraiser this April 2009. It’s going to be called “Artism” We’re inviting local autistic artists, artists who are family members/friends of autistic children, and adults whose art has been inspired by autism, to submit their work for the show. We’re selling tickets and all the proceeds go to autism research (specific organizations TBA). We’re going to select a favorite piece beforehand and use it as the logo (with artist’s permission) on the t-shirts we plan to wear and sell at the event. We live south of Boston and have a number of people heavily involved in raising autism awareness…but given the cold weather five months of the year, and the fact that there is a walk benefit for just about everything, we wanted to do something a little different.
I’d love to hear your thoughts on this…does the puzzle piece really resonate with people? It seems like it has such a strong market presence at this point people know what it is on sight…but I agreed with you on your points above about being defined by a puzzle piece…seems a bit thoughtless. Anyway, if you have any suggestions on this fundraiser and other on-line sites I should reference before the event, please let me know.
Thanks
Karen
Karen – Let me first say that your idea to do an art show is brilliant. I enjoy walks and runs, but you’re right in that everybody does them. Yours is a very creative idea at many levels.
There are some absolutely brilliant autistic artists; I’m talking mind-blowing stuff. Many autistic adults have described their learning and thinking styles as being very visual. Temple Grandin even has a book called “Thinking in Pictures”. So to say that you’re really on to something by doing an art show is an understatement.
I can’t say as I’ve done a scientific study of this or anything, but most parents I run across are fine with the puzzle piece, and many sport one on their car. (FWIW – I don’t and won’t.) Most autistic adults I run across online hate it.
As I’ve said before, I think the puzzle piece is about our understandable feelings of cluelessness as parents and not about our children, though I think a lot of people haven’t tuned into that distinction. Regardless, since many do interpret that symbol as being about our children, I think it can tend to reinforce negativity about autism with the public at large and many parents, too. To me it just says, something is missing, my child is incomplete, or worse, he’s a few pieces short of a complete puzzle. (Insert few-fries-short-of-a-happy-meal-esque analogy here.)
I’d like to see us move toward symbols that are more affirming. A goodly number of people I run into who have little or no exposure to autism look upon us as parents with pity, which I don’t need nor want, and my fear is that at least part of that is reinforced by the symbols we use. That’s just my opinion and others are welcome to theirs. It’s just that I’ve studied the meaning and interpretation of symbols as part of my former days as a career student of sorts, and I can’t help but draw the conclusions I have.
I think parents of autistic children are really quite happy to rally behind any universally-recognizable symbol of autism as an awareness-raising tool. It gives us something to display to tell people we’re not hiding from the world. I do think that’s a very positive thing, but I can’t help but think the puzzle piece might be working against us within the consciousness of the public at large.
Personally, I would rather see us focus on symbols that are about our children and that portray them in a much more positive light. I’ve seen every permutation of a puzzle piece to the point where the whole thing has collapsed into a banal expression of, well I don’t know what it expresses anymore other than how I interpret it now. It’s like people use it out of reflex than any creative expression of anything.
If you want my opinion, I’d like to see us adopt some sort of symbol that meets criteria like:
* It should affirm the worth and integrity of our children and the gifts they have to offer the world.
* It should drop this ‘autism is a tragedy’ tone and hold up all the positives our children bring to our lives.
* I’m fine with it if it expresses that autism is very challenging to the one who is autistic and those who parent them. I think being honest is always a good thing.
* It shouldn’t have any allusion whatsoever to puzzles.
* (And some things that are increasingly important to me) It should communicate that we love our kids; we’re proud of them; if you don’t like having to ‘deal with’ our children you can bite me; we have an attitude about this; we will fight anyone who stands in our way (and win, too); and, it should make me want to pump my fist in the air and shout some barbaric yawp-like noise when I see it.
And if I had a vote, I would limit eligibility for your ‘favorite piece’ selection to only those artists who are autistic. To me it’s a much more affirming outcome for an exhibit about autism to highlight the giftedness of an autistic artist. This isn’t to diminish the value of the other artists, but I think by doing this you’d be making a very positive and encouraging statement about autism and autistic persons.
I’ll look into some web sites when I get a minute. One suggestion I’d make right now though is to find some blogs written by people who are autistic and ask them what they think. I feel like I can talk with some authority about issues relating to being a parent and what I think my son needs right now, but as far as what is important to those who are autistic, it’s best to go straight to the source.
I’m late to the party, but this is going to be an issue for years, so I figure I should mention that my “unpuzzled” design is copylefted. You can find a large-sized copy here, free to use as you like.
Bob, thanks for stopping by and letting us know about your design. The party – such as it is – is ongoing, and we’re a come-as-you-are-whenever-you-get-here sort of crowd. You’re right; this ongoing conflict over symbols and such is going to be with us for a long time. The more creative designs like yours we can get into the broader conversation, the better off we’ll all be for it.
I hope those of you reading this will follow his link and check out his designs.
Autism Speaks did it again the other day by expressing their disagreement with something by saying (I may be paraphrasing a bit), “the autism community cannot support this.” It was about as clear and public admission as it gets that Autism Speaks sees itself as the arbiter of what all of us are thinking – or apparently should be thinking. Well, glad we cleared that up.
Time to go find me some non-puzzle magnets for our car. I’m not a car magnet-person, but I think I’ll make an exception in this case.
Sorry I strayed off the point there. Bob, keep up the good work!
Maybe I’m missing something, but shouldn’t we be more focused on helping people with autism/ finding a cure. Rather than fretting over a logo? Aren’t there more important things to worry about?
We are speaking of human beings here, Courtney. We DO think in symbols, and symbolism pretty much defines HOW we think – and indeed, what we CAN think.
Defining autistics as “puzzles with pieces missing” is an other-identification. It says that their problem is that they confuse YOU. It says that before they can fit in, a “piece must be found.” It’s a powerful metaphor – and it has powerfully defined the whole discussion about autism in ways that are profitable to people “doing something about autism” but not terribly useful to doing anything useful for autistic people.
I’m not saying this is deliberate or mean spirited in any way. What I AM saying is that it is *limiting.* And further, we are wasting quite a few perfectly good people by adhering to a very outmoded view of what “normal” should look like.
@Courtney – It’s a fair question. I think it is important for a few reasons.
Speaking solely from a parent’s perspective, autism becomes a fundamental part of your life over the very long haul. As a result, you become a long-term or lifelong part of a diverse community of people who in many ways have a unique culture, language, shared identity, and so much else. And within that there are those who are autistic and those who are their parents and families and those who work with us and serve as advocates and so on. So you then have all of these unique groups coming together under one umbrella, for lack of a better metaphor. To me it’s felt somewhat like moving to a new country and becoming a passport-carrying citizen of the Republic of Autism.
Language, vocabulary, and symbols are one of the most essential parts of a culture, whatever that culture is and regardless of how many other identities we may have. These can be descriptive, affirming, or also destructive.
Bob made a critical point in his comment – “We DO think in symbols, and symbolism pretty much defines HOW we think – and indeed, what we CAN think.” I haven’t gone looking for hard statistics on this, but most all of the autistic children I know or have been around process things and communicate through visual methods. The adults I’ve conversed with online almost all do likewise, so I think we can establish how fundamental visuals are. Our houses and schools are covered in little picture cards with symbols on them that our kids use to learn and communicate. So with autism, perhaps more than most anything else I can think of, symbols have many more times the impact than they do in other contexts.
Like it or not, Autism Speaks is presently the most widely recognized organization and voice of autism. Their logo has become the almost-universal symbol of autism. If a picture is worth at least a thousand words, then that symbol is doing a lot of talking for people, many of whom don’t much like what it’s saying. Within autism, speaking is a fundamental issue that is very challenging for many and impossible for some. Assuming the role of speaking for someone else about who they are but you aren’t is at minimum an awesome responsibility but more likely is just arrogant.
What we say about each other in words and symbols matters, regardless of whether it concerns autism or anything else, and it’s even more important when it concerns the people we share our lives with and whom we love and care for. Our words and symbols set the tone for conversations. And for autism that tone we create informs everything we talk about with schools, legislators, media, the general public, and more.
If we begin from a place where autism is described or portrayed as a negative or as a deficit or it’s talked about using words like ‘damaged’ or ‘broken’, that may help some groups raise money but it’s terribly harmful to the work we’re trying to do every day to build our kids up and it’s very hurtful to autistic people when they read and hear and see negative things said about them, as it would be to anyone.
I will argue that helping people with autism and finding a cure are two completely different conversations. (And on that latter point, I’m definitely not going there right now. Too charged of a topic.) At least in my opinion, the puzzle piece, its symbolism, and the rhetoric surrounding it have contributed to the thinking that helping and curing are the same thing. I’m not saying that you personally are saying that, just that I believe what is communicated about autism has largely been negative and that has led us to some real problems in the present. I do think that tone is changing for the better slowly but surely, however.
Bob’s comment came in as I was writing this, and he articulated some things better and more succinctly than I could obviously, especially concerning what all is at stake here and the effects that has on people.
When your child is screaming inconsolably, spending all afternoon reciting dialogue from the same scene of Finding Nemo for the 97th time, banging his head on the floor, or staring at you in terror because he knows he can’t do something and that tears him apart inside, then talk about logos seems rather less important. I guess in that long haul view of things, while we still spend most of our time concentrating on what’s going on in our house, we know our futures are linked with everyone else’s and we have to commit ourselves to the issues affecting our larger community.
I didn’t intend to write a very long response, but that’s how I do sometimes. I certainly do not mean this as a negative response to your comment. You gave me something important to think about, and I just ran with it.
Thanks!
I am very late here, but after hitting my head on a wall yet again at a group of idiot parents posing as an autistic advocacy group, I thought I should offer my services around as an autistic adult whose opinion one can solicit. In no particular order:
Original post: I think if you asked my mother, she would tell you that I am about as puzzling to her as the six-words-to-a-page books they made children read in school when I was a boy were to me. I could read at an adult level when I was three years old, if that tells you anything. You see, the household I grew up in, I will be honest here. It became abusive over time because of the explosion in living costs over the 1980s, and the fact that social services for women with autistic children who could do more than scream and hit themselves at the sight of running water were utterly non-existent. A lot of screams into the ear from mere centimetres away, a lot of scratches, punches, and hits with solid objects. Fast forward a quarter of a century, and my mother is now trying to help a son who suffers serious PTSD symptoms that can also be attributed to his school years and run-ins with psychiatrists whom he could not have made himself more obvious to at the time if he walked into their office with “I am autistic” tattooed into his head. It is no mystery to my mother at all why if Suzanne Wright were to show up on my door tomorrow, I would gun her down and laugh in her face.
Courtney: You might as well have gone on the Oprah Winfrey show and asked why we do not focus on trying to cure blackness. Good one. Make no mistake about this. Come to my door offering me a cure for what differentiates me from those who abused and forcibly isolated me during my childhood and adolescence, and you better believe that I will kill you.
Karen and Tim: On a more positive note, I am glad to see your posts here, and they have reassured me that not all parents of autistic children/teenagers/whatever are godawful. Lately when I have been reading some of the things posted by some parents, I have been weeping that humanity is lost.
Myself, I have been attempting to go back and study filmmaking as a future career, but it has not been going well because of the PTSD symptoms. I only have to go near a school-like place and my senses go haywire. I see the ghost of ten year old me running along beside me, crying at me to turn back and get out of here.
I believe that there can be a better tomorrow for the autistic and everyone else with them, but genuine reconciliation must occur first. People like the education department of New South Wales, for example, must step up to the plate and admit that abuse of autistic children for reasons relating directly to being autistic has occurred in the past and that they are entitled to some kind of justice. Governments must directly ask autistic adults like myself what we actually want. But above all else, laws like the Fairness Doctrine must be restored with a specific focus on pre-empting every ridiculous statement made by the like of Jenny McCarthy with commentary from autistic adults and actual qualified autism experts such as Anthony Attwood.
Anyway, thank you for one of the best posts regarding the autistic spectrum that I have so far read, Tim. I will make a point of coming back to check this journal some more in future.