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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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Sould you get your child diagnoised with autism or not?

To most people a diagnosis of autism for their child is the first step to dealing with a lot of the problems that they have been facing.  But for others the idea of a diagnosis is akin to giving their child a label for life; one that they think is unfair to inflict on their child.  I would presume that most people reading this will have a diagnosis, or know someone who has a diagnosis.  My own personal view is that you should get yourself, or your child diagnosed, if you think they do have autism. I talked to people on Twitter and they made some points about not wanting to get very young children diagnosed, or believing that they could handle their own children’s problems better than professionals could.  I understand both these points, and even though I don’t think a diagnosis would hurt just to make sure they knew what they were dealing with, and to make sure the child didn’t have something else going on that they weren’t aware of, they aren’t the particular type of parents I am talking about.   I am talking about certain people – some of whom I have encountered in real life, and others on-line – who treated being diagnosed as autistic as though it was some kind of stigma. They looked down their nose at parents who got their children diagnosed, and acted as if they were better parents for making those decisions.  Those are the kind of people I am talking about in this blog.  I don’t think it matter what age you get diagnosed at as long as it works for both you and your family, so none of this is aimed at people who choose not to get very young children diagnosed.  But in this blog I will weigh up the pros and cons to try to understand other people’s point of view.

Cons:

  • A lot of people say that if you get your child diagnosed and therefore, label them, you are marking them out for life; people will treat them differently or maybe patronise or bully them. 
  • They also believe that their children will feel that they have something wrong with them and that they aren’t normal.  They worry that this will affect their self-esteem.
  • Some people say that they don’t want social services interfering in their family life, as they might if the child was diagnosed. 
  • A lot of parents will argue that they don’t want a medical diagnosis for what they perceive to be just their child`s personality.

 

When it comes to giving children a label – yes, fundamentally that`s what any diagnosis is – one thing is for sure; if your child does have autism and it goes undiagnosed, they will pick up their fair share of labels going through life. Depending on how it expresses itself; they could be labelled as shy, rude, ignorant, unsociable, and in some cases even violent.  This is due to the fact that issues they could be helped with – if people knew what was going on for them – go untreated because they don’t have that one label of autistic.  Also, I don’t know about anybody else reading this, but I find it pretty offensive that a parent wouldn’t want their son or daughter to be labelled with something that I have.

The likelihood is that if your child has undiagnosed autism then they will feel that there is something wrong with them.  They will feel that they don’t exactly fit in, but they won’t know why.  They may become alienated and lonely, but if they know that they have autism then they would know that there is a perfectly good reason why they don’t feel the same as everyone else, they would know that there are plenty of other people out there just like them and that they are not abnormal.

It is perfectly understandable that people don’t want Social Services to interfere in their lives – but why would they?  Unless you contact them, they won’t even know your child has been diagnosed.  And anyway, even though they may not be able to get it right every time, they are a perfectly good resource if you find you do need them somewhere down the line. 

The point about a medical diagnosis/child`s personality is a fair one; but just because your child gets a diagnosis doesn’t mean they have to change – they will still be the same child with the same personality.  Anyway, autism doesn’t make your personality, it is just a part of how your brain works.  Even though I am fairly positive about autism I have had a lot of struggles with it over the years.  I have managed to change certain aspects of it, and I don’t believe that has affected my personality whatsoever.

 

Pros:

  • Getting a diagnosis allows you to finally put a name to any issues you may have been having.  What I mean by this is, especially as you get older, you may start wondering why you find it hard to be in busy places, why you get anxious and panicky, or any number of other things.  The stress of having to deal with these things is bad enough, but if you add that to not knowing why you have them in the first place, it becomes a pointlessly stressful situation.
  • It gives you access to a whole host of services.  There are a lot of services set up to help people with autism, and your child will be autistic whether you get them diagnosed or not.  They will have all the same issues other autistic people have, but all those other autistic people will have access to the services – your child wont.
  • Also, people who get diagnosed will be able to look at other people who have been diagnosed with autism, talk to them and find out what they did to make life easier for themselves, and find out what they can do to help themselves.  If you are undiagnosed, not only do you miss out on services, but you miss out on other people’s experiences.
  • It will actually give your child a lot more self-confidence.  This is true whatever age you are diagnosed at, but especially so for children, who struggle to understand why they are behaving in the way they are.  If they can understand what it is that makes them behave in this way they actually gain a lot more confidence and self-belief, and it is easier to then tackle the bad parts of autism.

 

I still believe that being diagnosed is the best thing for somebody with autism.  If it was anything else you wouldn’t even think twice.  I think you can still take matters in to your own hands and do what you think is best for you and your family – a diagnosis confirms that you are doing the right thing – there is no need to let professionals take over.  And your child doesn’t have to tell anyone they don’t want to tell, that they have autism.  The label won’t follow them around if they choose not to tell people, but if they behave in certain ways without diagnosis, people will remember, and that will follow them around.  In my personal opinion I think it is best to get your child diagnosed as early as possible, just so it is clear what is going on.  I wouldn’t have a go at anyone who didn’t get their child diagnosed until that child was old enough to make that decision themselves.  But I just feel that in my own life, being diagnosed was a huge turning point in allowing me to get control of some of my behaviours and to become more confident.

 

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