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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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Dyslexia real or not?

There has been a lot of talk lately about whether Dyslexia even exists.  As someone who was diagnosed with Dyslexia when I was seven, it seems very odd that people are questioning whether it exists or not.  I know it exists because I have lived with it all my life.  I know this blog is normally about autism and related issues, but I have given a bit of thought to this over the last day or so and just wanted to put my views out there. People who claim it doesn’t exist seem to be saying a couple of different things: one thing I`ve heard is that it is mostly middle-class children who are diagnosed with having dyslexia, suggesting it is something rich people come up with to make excuses for children who aren’t really that intelligent – the main argument seems to be that instead of trying to diagnose something, you should simply give the children the help that they need. It was also argued that a diagnosis wasn’t helpful and all children who struggled with reading or writing should be given the same amount and type of help.

There are a few points I would like to make:

1)      Of course mostly middle-class children are being diagnosed – you have to pay for a diagnosis – even if that comes back saying your child doesn’t have dyslexia.  The reality is that in today’s economic climate, the vast majority of people can`t afford to spend a few hundred pounds on something that they can`t guarantee will help them in the long run – but if you have the money, you spend it because you think it might benefit your child.  It is no different than anything else throughout history; middle and upper class people will often look as if they suffer from something more, simply because they have the money to go out and get diagnosis and treatment.

2)      One former teacher said that he believed debates about terminology and correct diagnosis were taking up time that could be spent helping children and coming up with ways to teach them to read and write.  Well, in a way he is actually right, but my question would have to be – if he thinks spending time on terminology and categorising peoples problems are a waste of time, why spark a debate about terminology?  It is hypocritical in the extreme.  He is right, it is better to help people rather than spend time debating what you are going to call the issues they are having, but does that mean we should remain ignorant and refuse to diagnose anybody – no, of course it doesn’t.

3)      Should all children who struggle with reading and writing be given the same type of support that dyslexics are given? Short and simple answer – no – First of all, there is a reason people with Dyslexia have specially designed techniques to help them to learn to read and write and spell.  It is because they need specific help.  Somebody without Dyslexia may pick things up faster than somebody with Dyslexia (and remember I speak as someone with Dyslexia when I say this) Why should they have to work with techniques that go more slowly than they can learn?  There is no point holding them back.  Of course it is right to give them the same level of support, and to not act as if their inability to pick something up is less important than that of someone with Dyslexia.  But that doesn’t mean you teach everybody the same.  Also, if you teach people with Dyslexia just like everybody else, the likelihood is that you will destroy their confidence.  They have a perfectly valid reason why they struggle to pick things up – it doesn’t mean that they will never be able to do it, it just means they will have to work hard.  But if you take that reason away – you tell them that it doesn’t exist, that they are just like everybody else – what does that make them? Stupid?  I am not saying Dyslexia can be used as an excuse.  People with Dyslexia don’t need an excuse – they have a perfectly good reason.

4)      Diagnosis itself – of anything – is a strange one.  Without getting too philosophical about it – does anything really exist?  Something like autism for example; everyone in the world thinks and feels things differently.  They have things they find easy and things they find hard.  They have a certain way of thinking.  A certain percentage of these people, who think and feel and interact in a different way to the majority of people around them are put in to a big category named autism.  Now at one end of that category you could have somebody who is slightly socially awkward and likes spending time alone – you could have a highly successful business man who could be the CEO of a company and make massively important deals every day.  At the other end you could have somebody who just sits in their room every day, can’t talk or look at people and still uses nappies.  Now without wishing to be derogatory towards anyone, you can see that there is a vast difference between those two individuals, and yet they are both diagnosed with the same condition, because they both share some of the core symptoms – just to differing degrees.  All you are doing when you diagnose someone is ticking off a list of symptoms that put them in a certain category and sub-category which somebody else thought up years before.  Now that might sound pretty negative, but in actual fact I am not so sure it is.  If you can put a name to your collection of issues it is much easier to get help. You can search for specific resources out there and talk to other people with the same condition, find out what worked for them and what might help you.  If you don’t diagnose it, you never really know what is going on for you, therefore you can’t get help.

5)      If you mention Dyslexia to most people, even a surprising number of professionals, they seem to think it is something to do with how well you can read.  This is nonsense.  Dyslexia has certain key elements, but depending on who you are you can have all kinds of different issues that go along with it.  Difficulty in either reading/ writing, poor organisational skills and a bad short-term memory are the most common issues, but there are many more.  People who argue that because it doesn’t affect everybody in the exact same way it can’t exist, are just being silly if you think about it.

 

 

6)      A lot of people will claim that everybody has had symptoms of Dyslexia at some point in their lives, and really they are just things that everybody struggles with – that some people are simply more intelligent and get through these issues faster.  I should probably tell you a bit about myself at this point:  I could read efficiently by the age of three, but now, even aged nineteen, my hand-writing is still like that of a very young child and my spelling is terrible.  I don’t mean that in the sense some people do, where they make the odd mistake and then go back and change it – I mean there are literally thousands of words that I still can`t spell, even to this day – many of them basic, everyday words  I was diagnosed with Dyslexia aged 7.  At this time I had an IQ of 120, which was higher than the average fourteen year old.  I co-authored and published my first book aged twelve.  At this time the only things I could handwrite were my name and a few basic words.  When I was fifteen and had my second book published my handwriting and spelling had improved, but was I still years behind the average fifteen year old.  Because I was home educated I did not have a GCSE in English, so I had to take one when I was in my second year at college.  I did get half an hour extra in my exam but I didn’t use it, but I did do the exam on a lap-top, and I managed to get the second highest mark in the class.  I finished college after obtaining the equivalent of three A* in IT.  I don’t think that one of my assignments was handed in without at least ten spelling mistakes.  I am not some kind of genius but I am fairly intelligent, yet even to this day my handwriting and spelling are absolutely terrible.  If it wasn’t for having a diagnosis of Dyslexia, and my Mum creating Dyslexia friendly strategies to help me with my spelling, I don’t believe I would have achieved any of the things in this list.  The frustration and anger that you feel when you can’t spell a word you need to spell or write for an assignment, even though you know it is only a basic word, is incredibly hard to describe to anyone who hasn’t felt it.  But I think that if I didn’t have a diagnosis this probably would have destroyed my self-esteem and caused me to get so angry I`d put my fist through the computer.

How I started writing about autism

It is just coming up to ten years since I was diagnosed with autism.  Obviously in the years before my diagnosis things were very difficult for myself and my family.  I`d be one of the first people to say that autism has its good side, but you would be a fool to deny that there are a lot of negatives that come with it.  Simply getting a diagnosis helped a lot with those.  Knowing what it was we were dealing with obviously made things easier, and my autistic brain coped better after it had more facts presented to it.  But things were still difficult. The techniques that were going around to deal with certain challenges were fine, but for us they just didn’t quite do it.  This isn’t to insult the techniques, but every technique, no matter how well thought out and fine-tuned it may be, isn’t going to be able to help everybody.  So my Mum began to create techniques of her own; a points-based reward system that helped to encourage me to do things I found difficult, rather than punish me if I had a meltdown or something.  She created a series of Scripts, Signs and Sketches that helped me to deal with challenging situations, and helped me to understand social etiquette better. And something that might be familiar to you if you have read my previous blogs; the Transition Techniques – a series of techniques that helped me to deal with changes, whether they be small or monumental in scale.  These were all incredibly effective. 

We began to notice real changes in behaviour and in our day to day lives.  I am presuming you are not stupid if you are reading this, and I wouldn’t treat you like you are and try to tell you that everything was perfect, but there were huge differences.

 I have always been an avid reader.  I do read less now because I am so busy in my day to day life, but when I was younger I would generally have at least three books on the go at any one time, and would spend the majority of my free time reading.  I don’t know if any of you read the blog I wrote on IMAGININGS, but if you did you will know that I was already creating stories in my head from a very young age – with casts of hundreds of characters, and story lines that I would create and play out over many years.  It is fairly obvious that the two things were bound to meet at some point, and at around the age of eleven I did begin writing my first horror novel.

 I remember one day saying to my Mum `I think we should write a book on these techniques we`ve been doing. ` – to my surprise she`d had the same idea.  So really that`s where the ideas for the books came from. ( you can check them out here http://www.jkp.com/catalogue/author/1762 )

We both felt that because of our knowledge and experience of autism, and our techniques for dealing with autism, that we were more than qualified to advise other families.  The thing is, you can never speak for everybody with autism, but I think that because I experience a lot of the things that the majority of autistic people experience – but I am also able to articulate and explain them in a way that not everybody with autism is – I am able to write about them in a way that people without autism can’t do.  It is not that I think that anybody without autism shouldn’t be writing about it, it is just that personally, I believe that people with autism are the best qualified to give advice on it.  It is with that principle in mind that I started writing.  Of course the Reward Plan book was co-written with my Mum.  She believes the same thing I do about autistic people being the best to give advice, but she did create all the techniques which allowed me to be able to express my views in this way.  And they are techniques that I believed at the time and still believe now, could be incredibly useful for a large number of people.  

I suppose what I am really saying is not that you shouldn’t listen to someone who isn’t autistic; it is just that when you have somebody who is autistic, and is able to articulate how things are for them, that can give parents and professionals an insight in to autism that they might not have had otherwise.  A lot of non-autistic people will look at behaviours, and things such as meltdowns from the point of view of an outsider.  Sometimes you need somebody with autism to explain the logic and the reason behind each piece of behaviour – because there is always a reason behind it – nothing is irrational, no matter how much it may appear to be.  Again, I am not trying to discredit any professionals without autism, but I think everybody would agree that when you get autistic individuals who can express the reasons behind their behaviour, it is so much more useful.  And that is basically why I started writing, I wanted to be able to try to explain to people some of the reasoning’s behind these behaviours, and some of the ways that could help.   

Everyone who has read both the Reward Plan and Transition Techniques books say they have found them incredibly helpful, and have begun to use some of the techniques themselves, so overall, I think what we have been trying to do has been working. 

Currently we are working on two more books, but right now I have no idea if they are going to be published or not.

 

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