Autistic History Month: the puzzle piece

This article has been rewritten thanks to the feedback in the comments by Quarries and Corridors and Kate Gladstone.

When I first heard about November being Autistic History Month, my mind went blank. I was still struggling to make sense of my personal history in the light of my autism diagnosis. I didn’t know anything about the history of autism in general. Or important historical figures. Or the history of the neurodiversity movement.

But as Unstrangemind posted so eloquently on her blog: “Our own people do not know their history.”

So when I came across some interesting tidbits and factoids in my utterly random browsing today, I wanted to share them with you. On this last day of Autistic History Month 2013. Because we need to know our own history.

The puzzle piece.

First impressions.

When I first came across the puzzle piece symbol a couple of years ago, before I even started thinking of myself as autistic, I thought it was fun. Because I like doing jigsaw puzzles. And it had LOTS OF COLOURS! I’m helpless when it comes to colours. But the puzzle ribbon used by the Autism Society didn’t have as many colours, so it wasn’t as much fun. And Autism Speaks puzzle piece was even worse because it was all monochrome and boring and all by itself.

Second thoughts.

I started thinking about what the puzzle piece was supposed to mean. And I started applying it to myself. Am I a puzzle to be solved, a mystery to other people? Am I that piece of the puzzle that just won’t fit in properly no matter how hard you try? That’s not how I want to think about myself. And I don’t want other people to think that if they’d just cut a little bit off my corners, I’d fit right in. You know, that last bit of sky that you KNOW can’t go anywhere else. But it won’t fit. And you don’t feel like taking out all the sky pieces and starting over. So you just hammer it in and declare the puzzle solved.

Bugger that. I’m not a puzzle.

So imagine my surprise when I discovered that neither Autism Speaks or the Autism Society invented the puzzle piece symbolism.

It’s far older than that.

In 1962, a small group of parents in the UK who were frustrated at the lack of understanding and help available for them and their children started a group that would in time become The National Autistic Society and, as far as I can tell, the first autistic organisation in the world.

They’re the ones who started using the puzzle piece. It was designed by Gerald Gasson, a parent member of the Executive Committee.

The minutes of the Executive Meeting of 14 February 1963 read: ‘The Committee decided that the symbol of the Society should be the puzzle as this did not look like any other commercial or charitable one as far as they could discover’.

From Perspectives on a puzzle piece

However, it wasn’t just a puzzle piece. It was a puzzle piece with a weeping child inside of it.

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’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.

From a presentation by Helen Green Allison given in 1987

They actually changed their name from The Society for Autistic Children to The National Autistic Society in 1982, recognising that autism is a disorder that affects adults as well, something that several well-known organisations still struggle with today. But the puzzle piece with the weeping child remained in place until as late as 2002, around the same time they started making an effort to include autistic people on their board.

Their current logo symbolises inclusion and support, and a lot of what they do speaks of focusing on acquiring supports and services for autistic people and looking at the social model of disability instead of the recovery/cure rhetoric that a lot of other organisations still engage in. But it took a lot of pressure and criticism from autistic activists before they got to that spot, and it’s only been a relatively recent change.

I’m going to be a bit stubborn, though. Despite what Helen Allison wrote in 1987, the original meeting notes only mentioned the puzzle piece as being different. The notions of “not fitting in” or “solving the puzzle” were tacked on at a later stage.

Just different. As we are all different. No more. No less.

I think every person should decide 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 recognisable symbol to many people, or we could try and find something that appeals to all of us. But in the end, it’s up to you.

But I do like knowing a little bit more about the history of the puzzle piece symbol and its origins.

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50 thoughts on “Autistic History Month: the puzzle piece

  1. Interesting. Thanks for posting this. I had wondered what the history of the puzzle piece was.
    I love the colors in the bottom picture too. They remind me of rows of cans at the grocery store. 🙂

  2. I like this explanation of the puzzle piece! Better than being a mystery to be solved by others. When I first saw the puzzle piece symbol my thoughts were very similar… I liked the colors, and puzzles are fun, so it was kind of like, “Hey, autism is cool!” Why can’t we just leave it at that?;)

    • True! I don’t like the idea of “solving the mystery” either. We’re not the puzzle pieces. The way we used to do jigsaw puzzles in our family was a collaborative effort, which is far more fun!

  3. That is fascinating! I knew that Autism Speaks didn’t invent it, but didn’t know where it did come from. Kind of sad that most people only know it now as attached to Autism Speaks and not to the better organization that originated it.

  4. Thanks for that, Ine, what a great piece! I know nothing of our history, which is why I fell in love with the idea of Autistic History Month!!

    Love your writing as ALWAYS! I’ll share this post when I get home 😉

  5. Reblogged this on listenwatchreadshare and commented:
    I’ve never reblogged before. I worry about cluttering up blog space for people with things they did not choose to receive. But this lady has tempted me several times. She always comes up with something sensitive, humorous, informative and original.

  6. Wow, very cool. The puzzle thing has always bugged me, but a big part of my annoyance was that I LOVE jigsaw puzzles, but HATE the symbolism. I don’t think I’m interested in reclaiming it personally, but it’s very cool to know it isn’t a black or white thing. You know, since I’m always looking for excuses to reject black and white thinking. 😛

  7. British person here. The National Autistic Society has a long history of not speaking for autistic adults and generally using the language of pity and deficit when talking about autism. When they had a puzzle piece as their logo it had the image of a ‘weeping child’ in the middle – not exactly positive!

    Here’s a 1987 explanation of their choice of logo:

    “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’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.”

    Source: http://www.autism.org.uk/News-and-events/About-the-NAS/Who-we-are/Story/Perspectives-on-a-puzzle-piece.aspx

    I should say that all long running British disability charities had terrible terrible negative imagery and language even as recently as the early 1990s, it was in the mid-90s when disability rights became the message that charities like Scope (formerly The Spastics Society) represented.

    British autistic activists hated the old NAS weeping puzzle logo and rightfully saw it as a victory when it was changed. It was only removed in 2002, around the same time they made an effort to include autistic people in their board – you could say that the old logo was a barrier against doing that – how can a weeping child trapped in a puzzle speak for themselves or anyone?

    The NAS changed gradually over several decades, mainly because the parents who founded the society saw their kids grow up into autistic adults, but also because autistic adults put them under a lot of pressure in the 90s. It was a long fight to get autistic people on to the board of the NAS, Even now they still get plenty of very valid criticism, including from former autistic board members, especially for some of the stuff said at their medical conferences, but are generally a lot more positive now after a decade of having autistic people on their board.

    I think now days the NAS do really good things, although even in the last year they’ve had campaigns that made me cringe. They’re an example of how unrepresentative parent-run disability organisations can be changed to represent the disabled people they’re meant to. Maybe Autism Speaks could learn from them?

    But yes, the history of the puzzle piece is that autistic people have been campaigning against its use to represent us since before Autism Speaks existed. I remember the old Autistics.org site from the 1990s used to have a crossed out puzzle piece as its logo. I dug this out of their archive from the (facetious) How To Become An Autism Expert’s guide to valuable vocabulary:

    “Mysterious:
    Similar words, such as strange, puzzling, bizarre, and so on will do as well. This word adds an air of mystery to autism. It makes autism seem like something exotic. If you are making a logo, incorporate puzzle symbols into it for a similar effect.”

    Source: http://archive.autistics.org/library/autexpert.html

    So yes, anyone who’s reclaiming the puzzle piece, remember that it first looked like this (and only got changed in 2002): http://snichol.freeserve.co.uk/nas%20logo.gif

    • Thank you SO MUCH for the additional information! I was only going by their current mission statement and activities listed on the website, which all seem pretty OK. I’m not surprised to hear that this came about through pressure and activism from autistic adults, though. I’m glad they achieved success, but it’s sobering to know that even in this case, we had to speak up for ourselves because the parenting community was still stuck in their tragedy rhetoric.

      Is it OK if I include some of your information in the original post, in case people don’t get as far as the comments?

  8. It’s kind of sad that the puzzle pieces were “ruined” by these organization’s campaigns. As an NT parent, I always saw the puzzle as a representation of the “puzzle of the condition” – because if you can’t figure out something, it’s a puzzle. I never thought about it as the PEOPLE being the puzzle, because to me, that’s just – well – stupid and insulting. People are people, and the condition IS sometimes challenging to understand. For example, my son’s social challenges are a puzzle for us to understand and create work-arounds for; it’s also a puzzle for me to find ways to make OTHERS work at meeting us half-way and fostering acceptance.

    But for how these organizations use the puzzle and the pity? Yuck. It’s good to see that they got a bit less clueless over time.

  9. Thank you for this fascinating article, it’s good to meet you . I found you through Denise’s reblog on listenwatchreadshare as I follow her blog.

    My daugther (now 21) was diagnosed with Asperger’s Syndrome when she was 18 and I knew absolutely nothing about it. I joined my local branch of the NAS here in my town in Somerset but I have never heard of the puzzle piece! From my daughter’s point ot view, I know that she would relate very much to this feeling of being made to fit into a puzzle and her utter frustration, anger and despair the sheer lack of understanding of her condition since her diagnosis which has caused her to decline over the last 2 years (she suffers from extreme social anxiety).

    As you say so perfectly: ‘Bugger that. I’m not a puzzle!’ I second that 🙂

    I have had to fight so hard for her to get the support she so badly needed after her diagnosis and it is only now that she is seeing a properly trained Asperger psycologist.

    I wish you all very very best…Sherri

  10. your history…that is unfolding here, with your writing…is one of my new favorite histories…always enjoy your insights and terrific writing…thx for sharing so many great posts

  11. i had researched and found the same historic on the puzzle piece and probably felt a bit the same about it as I learned more about origin, interpretation and acceptance by autistics. I kinda LIKE the puzzle piece as a symbol (just the graphic look of it) and I initially understood it like “it all fits together” in the sense of ‘take the time and understand how your autistic child works’ maybe?
    then i saw graphics with childrens heads and a lacking puzzle piece and mentions of ‘the missing piece’ i felt that was a rather unfortunate understanding and use of it..
    i am not a great believer in the big autism family/community (any more) so maybe it doesn’t matter if there is a bit of division (also) about this symbol.. i think it is important not to assume though, but ask what people mean by using the puzzle, when in doubt..
    it occurred to me only recently that even my use of the colour blue (turquoisy-teal) in my blog could be interpreted in association to AS – of all things! but then it’s just a colour. they don’t own the colour blue. they don’t own the puzzle piece and as we both found out, they didn’t even first use it.

  12. I’ve been ill so I only just saw this today, but with your permission, I will add it to the blog links on the History Month blog.

    And I liked the puzzle piece at first, too. I made a macramé tapestry bracelet with the four-color puzzle piece pattern. That was before I saw all the logos with pictures of people with puzzle-piece-shaped holes in their head, symbolizing that there is something lacking in us.

    If you’d like to see it, I’ll take a picture of the bracelet I made.

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      • Thank YOU for allowing me to get the story told straight. Too often, when I put some facts and documentation in front of anyone’s rose-tinted guesses on the origins of the puzzle piece symbol (or certain other things), I get told: “NoNoNo, it CAN’T have been like that! It MUSTN’T have been like that that! How DARE it have been like that!” (or words to that effect). I have more than once been told — outright — that my having noted, documented, and mentioned a fact (which contravened a belief) is “atypical behavior because it goes against the consensus, and therefore cannot be possible or meaningful. To fail to prioritize the consensus as a greater reality than individually noted facts or information is a deeply autistic behavior, very unlike general human behavior.” (direct quote from a social worker with an ABA background)

        • I just LOVE learning new things, even if it means I have to revise my opinion. I just feel bad that it took me so long to update the article, because that meant people were reading the wrong kind of information because of ME.

          But yeah, you’re right that most people tend to stick to their opinions even in the face of overwhelming evidence. That direct quote is so scary. Just because a majority of people believe something, doesn’t make it right. I mean, we’re straight into Terry Pratchett territory there, where if enough people believe in a certain god, that’s enough to make that god exist.

        • I call it George Orwell territory (“2+2=5 because Big Brother says so”) — Orwell and some of the other great dystopian writers. The social worker/ABA-trained lady presented — as her own favorite and “most positive” example of “this important concept” (as she called it) — a hypothetical instance of someone in a low-tech society who had somehow managing to discover electricity, invent batteries or light-bulbs or whatever, then gone back to the rest of the tribe with a working flashlight? If the he tribal belief was that light came only from already familiar and accepted sources (such as the sky or candles), then — according to the social worker — the tribe would be correct to veto the existence of the flashlight, because “it was non-existent in the tribe’s reality paradigm, therefore it would need to be non-existent for any member of the tribe”: even if the flashlight inventor was able to demonstrate that it worked and that it could help them in their lives. (The point of the example, as the social worker presented it, was supposed to be that the flashlight inventor was “maladjusted and out of sync with the social reality” because he believed he had created something that the tribe did not believe could exist. I asked her: “So, if that tribe had a social worker and you were it, what you would be doing would be to convince him that this thing he was showing you couldn’t be real?” And she smiled and said, “Yes, exactly,” and was very proud of that … )

  15. I have a tattoo of a puzzle piece with more pieces inside of it and it’s for my son who has asperger syndrome and he likes my tattoo so I’m happy with it .

  16. The puzzle piece symbolizes the time when autism ess a mystery. This is a new era for advocacy so I would like to propose that weadopt a new symbol that draws attention to our current concerns ….that we share what knowledge we now have to help improve life today for people on the Spectrum, their families and society in general.That knowledge must be shared with people outside the advocacy community. Advocacy deserves a symbol that has significance both today and for the future. My recommendation is Bareface, a half complete image offered as a starting canvas for others to contemplate and draw Autism. Your article is both interesting and information. I enjoyed it very much. But I think you will agree that we should reflect on the meaning we each would like to see representing autism advocacy. My apologies for posting this link to my site which explains Bareface and provides samples of coartist work that has already been shown at galleries and major museums in Europe.

  17. When I was diagnosed as an adult, before I knew what a puzzle piece symbol was, I had the mental sensation of a myriad of disconnected puzzle pieces falling into place as the many mysteries of my past sorted out and fell into place. The puzzle piece works for me in spite of its checkered history.

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  19. Thanks so much for the article and the comments from others, about the origins of the puzzle piece.
    I have a chrome puzzle piece pin badge, which my Autistic daughter bought me, but as i was well aware of the AS connection to it i was pained to wear it, but my love for my daughter made me think No! i am wearing it and Stuff the negative connotations.. So I do and it is remarked on quite a lot; i simply say its a symbol of autism and refers to how much the typical, NT or mainstream world still has to learn about Autism & more importantly to learn about us with Autism.
    So its nice i can add an older link to its history, to what is now a person centred charity & a great resource for information,which is the National autistic society. Also that small group of parents in the 1960’s who were its origins we owe them thanks; as they have helped move forward so much Autism awareness/Acceptance in the UK, so no complaints from me re the NAS Also maybe we should not be so harsh with them for some language they used in the past, which needs to be seen in the context of the times it was spoken in,,

    The real Bonus is.. I can also keep my daughter smiling by wearing the gift that creates so many puzzling questions, which allows me to spread a little autism acceptance to the unknowing out there.. 🙂

    So a big thank you 🙂

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  25. This really is a marvelous post. Thanks for bothering to explain this all out for all of us. It is a great guide!

  26. As a developmental disabilities case manager, I work with adults with Autism. I look at it as a symbol that the individual is a piece of a greater puzzle. On that although it may be hard for them to find their place, their place does exist and they may just need people to help them take the time to find their place. That we all fit together somehow, we just have to support each other to fit together, just as each piece of the puzzle, when placed in the right spot, supports the piece next to it.

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