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Autism and the Puzzle Piece ………..

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The puzzle piece has become synonymous with autism, and with autism awareness over the years.  A lot of people use it, but most likely many of them don’t think about what it means.  I have been thinking about what it means, and what it represents recently, and I have to say that after giving it a lot of thought and consideration, and weighing up many arguments for and against, I am not a fan.  I am not suggesting it is immediately deeply offensive in the way perhaps racist language would be, and I am certainly not saying that people who use it mean to be offensive, or even mean anything negative about autism.  There are many reasons why I dislike it as a symbol, and in this blog I will attempt to explain what they are. This isn’t meant to be calling anybody out, and people should not feel like it is criticising them if they have used the puzzle piece.  It is simply my view, as somebody with autism, which I am putting forward to make people think.

In 1963 the NAS needed a symbol to represent autism because it had only been officially recognised about twenty years earlier, and it wasn’t really known about at all.  They wanted to be certain their symbol wouldn’t be mistaken for anything else.  There are a lot of charities out there, and finding a symbol that catches the public’s imagination, but isn’t too similar to anything else is difficult.  In the end they settled on a puzzle piece, with the image of a crying child in the centre, created by a parent member Gerald Gasson, This has to be seen in the context of the times, when the majority of people with conditions such as autism may have been institutionalised, and there wasn’t a great deal of care, support or understanding for autistic people.  The charity Scope was still known as the Spastic Society, and terms such as Moron, Imbecile and Idiot were still recognised medical diagnoses.  Virtually all the coverage of disability, learning disability, or any difference would have been negative.  So as a collection of parents who had set up what was probably the first autism-specific organisation in the world, they weren’t exactly in the best position to make sure everything was politically correct, and anyway political correctness as we see it today didn’t exist in the sixties.  When talking about why they opted for the puzzle piece and crying child, in the late nineteen eighties, one of the founding members said:

“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.”

This type of language may have been acceptable in those days, but nowadays the concept of somebody being `handicapped` or `suffering` from autism is outdated –  that part was symbolised by the crying child, so the concept of autistic people not quite fitting in to society was therefore represented by the puzzle piece.  But there are actually still a number of problems with this idea which I will highlight below. The first and most important thing to say is that as with any point I raise in my blogs, it is not just me saying it.  I did plenty of research in to what other autistic people and their families think of the puzzle piece, and these are some of the main concerns that were raised

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  • The first point that many autistic people raise is the way this symbol assumes that we are puzzles, to be decoded in some way, rather than just people.  It is impossible to ever truly understand another person, so in a way we are all puzzles.  It has been said many times that if people would just listen to what autistic people have to say, or read what they write, then understanding autism and the autistic brain would be much easier.  It seems as if you might as well use a puzzle piece to represent people from Japan because you don’t understand Japanese culture, whereas if you simply take some time to talk to, and listen to Japanese people, things will become clear.
  • Another point – this one actually raised by people who are neuro-typical – is that the concept of decoding the puzzle of autism really seems to be more representative of neuro-typical professionals than it is autistic people.  Autistic people simply live their lives – they are not trying to put a puzzle together.  It might seem like a strange distinction, but I actually think it is an important point.  It does feel more like a symbol that would be worn by people who do research in to autism rather than people who actually live with it.
  • Although the puzzle piece is often used either without thinking, or with good intentions, people often misunderstand it, and its meanings.  Part of this may be to do with not understanding its history, and part of it may be because they assume it represents one thing, without actually thinking about it any more deeply.  This may be why so many parents, and even autistic people use the symbol.  And really it does complicate the issue because although in its origins, and with what it represents today, it is a negative symbol, it is used in a positive way by so many people.

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This sometimes makes it difficult to keep in mind what is wrong about it.   The real issue is that it is not obvious at first glance what it`s supposed to represent; people who defend it say that the pieces represent the families and friends of people with autism, the colours can represent diversity, and overall it represents the mechanical and logical workings of an autistic persons mind.  Now personally – and I know I am not alone in this – I don’t think any of this is obvious at first glance.  In a way it kind of makes sense, but it doesn’t really because none of those things actually call for a puzzle piece.  But if you think about it for a while you can kind of make it make sense.  The problems with this is you shouldn’t have to think about it – it should be instantly understandable at first glance.  The fact that it leaves so much room for interpretation is no doubt part of the problem. *

  • The puzzle piece is a fairly child-like symbol, using primary colours and big jigsaw shapes   A lot of autistic people may like bright colours, and appreciate the symbol on this level, but in a way, because it is so simplistic it does give the impression of being aimed at children – which could be seen to be reinforcing the negative stereo-type that only children are affected by autism. And it was actually designed to represent children because at the time the National Autistic Society was called The Society for Autistic Children (until 1982)

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  • The concept that there is a piece missing from people with autism which separates them from the rest of society is incredibly problematic.  It could easily be seen to be implying that there is a template for how people should be – a template of normality that people should strive to reach – and that because autistic people don’t measure up to this template, they are not full, complete human beings.  The truth is that people are different in all kinds of ways.  Autistic people don’t have something missing from them; they might feel things differently or think differently, but this is just who they are, and is not because a piece of them is missing.  And in a way the symbol does give the impression that if this piece can be found, and slotted in to place, autistic people will finally be whole.

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It is also worth noting that although Autism Speaks didn’t create the original puzzle piece, they seem to be the organisation most associated with it nowadays.  The bulk of their time, money and resources are spent on puzzling out autism; trying to find cures, and researching the causes of autism.  I personally don’t support them, but if you do that`s your choice.  I think that for a while the puzzle piece might have changed to represent a more positive image of autism, but now I believe that because of how much this organisation have been using it, and how it has become synonymous with their campaign to cure autism, it has gone back to its original meaning – mainly that autistic people are somehow lacking.  The debate over Autism Speaks is something for another blog, and I know it seems unfair to let them have the monopoly on an image such as the puzzle piece. But I do find it strange when people I know who speak out against Autism Speaks are happy to use the symbol that this same organisation plasters all over everything it ever puts out.

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Now it would be easy to sit here and say stop using the puzzle piece – I don’t like it, and nor do many other autistic people – but that perhaps would be a little unrealistic.  It has become so ingrained within autism awareness, and campaigns for acceptance that it would be difficult for people to stop using it overnight.  In fact there is an entire industry that appears to have grown up around it: clothes, jewellery, tattoos, to name a few, all featuring the puzzle piece.  Yes, if most autistic people are opposed to the puzzle piece then it should be retired, but I wouldn’t expect this to happen overnight – it may ultimately take years. The National Autistic Society dropped the puzzle piece in 2002, probably because they realised people in the autistic community were not fans of it, for all the reasons stated above.  And maybe in time other organisations will drop it as well?  I suppose the question that I am asking is this – if the NAS created the puzzle piece and used it for so many years, but have now ultimately decided that it is not a symbol they want to continue with, why have other organisations picked it up and ran with it?  If they took the NAS lead in using the symbol in the first place perhaps they should also take their lead in moving forward, and finding a new, more positive symbol?

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But perhaps the most important thing you can do when reading this blog is just to think.  If you have not already been doing so then take a moment now to think about the puzzle piece.  How many times have you seen it in literature, on the internet, in videos, on TV and in books?  Think for a second about what it actually means to you.  Not definitions given to you by somebody else, but when you see this image, what do you think?  Some autistic people have said that they like to be described as a puzzle as they find it appropriate for them, but I was actually surprised by the amount of neuro-typical people who when they stopped for a second, and actually thought about how they would feel as grown men and women being described as a puzzle, an enigma, or something to actually be put back together, realised that they would hate it.

This blog isn’t intended to make anybody who has been using the puzzle piece image feel guilty by the way – it`s not a big deal – just have a think about whether you want to continue using it, or whether you want to use something different?  I read a comment on an old Facebook page a while ago that I think perhaps could be useful.  The person in question was saying that when they first saw the puzzle piece it made them think that autistic people were a piece of society that had been ignored for a long time, and that it was society that was incomplete because of its refusal to accept different groups of people, so that instead of being a puzzle themselves, autistic people were just parts of a larger puzzle – that being humanity in general.  If  the puzzle piece isn`t to be retired completely,  may be it is worth thinking about this, and deciding exactly what it is you are trying to say or represent when you do use  the puzzle piece as a symbol of autism – what is your message, and if that message were aimed at you, how would you feel?

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Decision makeing for people with autism part one .

 Making the right decision can be a difficult process for anyone; weighing up your options and working out the consequences if you get it wrong.  Decision making can be a stressful, painful, drawn-out process. But what if that decision is something as simple as whether to go out or not?  Or what film to put on?  For some people with autism this can be very much the case.  Autism can often make it difficult for people to be able to make even the most basic of decisions.  My decision making is much better now than it was when I was younger.  When it comes to professional decisions, for example my books or my blog, I don’t struggle at all.  But I still find decisions around the house very difficult.  For example, tonight, even though I have had a swollen and painful stomach for two days now, I still couldn’t decide whether I should force myself to go to the gym tonight, even though I would get no real benefit, or go tomorrow morning when it had calmed down.  When you think about it, it is a very simple decision.  And in the end I did decide to go tomorrow morning, when I would get the benefit. Even though I made this decision, it wasn’t easy.  I still had to think about it a lot and talk to my Mum about it.  Even though it’s not a right or wrong decision, and there weren’t any real consequences, whatever I decided – the simple act of decision making is difficult in itself.  But in the past, I probably wouldn’t even have been able to make that decision.  When I was young, even a question such as `which piece of fruit do you want? ` Would have got me worrying, and trying to puzzle out a right or wrong answer.  I know it might sound silly, but even those simple, everyday decisions, can seem like an incredibly complicated problem to somebody with autism. And even if they don’t, they can be difficult decisions for other reasons; when I was younger, and even to a point still today, I would genuinely have no particular feeling one way or the other when making a decision, so often I felt that it should be down to somebody else to make that decision as they probably leaned in one direction or another, whereas I was one hundred percent neutral.  A lot of people find it difficult to understand; that for me two things could be completely the same.  But it is for the same reason that I don’t get disappointed if I can’t go to something I was planning to go to.  Even though I enjoy doing things, I don’t have the same emotional reaction to them that other people do.  This doesn’t mean that I don’t enjoy it when I’m there, it just means I don’t feel the disappointment when I don’t go – in the same way that with some decisions, even though I would enjoy either option, I would have no strong feelings either way which one I do.

I think that one of the major contributing factors to not being able to make a decision is stress; I don’t believe that anybody truly performs well under stress.  When I was in college I never became stressed by the amount of work I had to do.  It was simply work that needed doing and handing in.  The work and the deadlines never stressed me out.  But sometimes when it comes to making decisions, I do feel stressed.  For me, and I think for a lot of other people, to put it in the simplest term possible – when I become stressed my brain doesn’t work as it does now – I can’t seem to put together a process to decide which option I want to go for.  Nothing springs forward and says `this is the right option, choose this. ` And I can’t figure out how to process the options to decide what I want to do.  My brain becomes mixed up and my thoughts jumbled; imagine you are walking down a corridor, and at the end it forks in to two separate corridors. Then when you get there you are put in a blind fold and spun round multiple times.  You have no way of telling which way you are meant to go, or how you are meant to work it out.  It is not that there will be any dire consequences if you make a wrong decision – it is that you physically can’t make the decision in the first place.

 

Part two of this blog coming soon, where I will discuss the impact that struggling with decision- making can have on your life, and some techniques to help improve your decision-making.

 

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