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Awareness versus Acceptance ( re-post)

As I have been too ill to prepare anything for World Autism Day I am reposting this.

Awareness versus Acceptance

Many people argue about whether awareness or acceptance are what people with autism want from society.  Lots of people will say that an awareness of autism is fine, but people can be aware and still not accepting.  Virtually everybody thinks they know what autism is, but that doesn’t stop people being offensive.  And some people argue that acceptance suggests that it is up to the neuro- typical people to say `Oh, we accept people with autism` as if NTs can decide what types of people are acceptable, as if autistic people have put forward a fairly good case and they`ve been accepted in to the day to day order of things.  My view is somewhere in between:

Awareness

  • Awareness means everybody being aware of what autism is, and having at least a basic knowledge of it.
  • Awareness is a positive thing because it will hopefully lead to greater understanding, easier access to services, and make life easier for autistic people.
  • The vast majority of people are already aware of the existence of autism, even if they don’t fully understand it.
  • Awareness can help improve the lives of people with autism.
  • Awareness can’t solve all of the problems.

Acceptance

  • Acceptance means people who aren’t autistic accepting autistic people and their ways.
  • Acceptance can be very positive as it might make things easier in the work-place or learning environment.
  • The word acceptance does have a tendency to give a lot of power to the people without autism, as it suggests that it is up to them to decide if they want to accept autistic people or not.
  • A lot of people don’t like the phrase `acceptance` for that very reason.
  • Does this mean that acceptance is a bad thing?  No, it doesn’t. But it does mean that it is something that you have to be careful about when approaching.

Taking the positives and negatives from the concepts of awareness and acceptance, I think that there is a good ground to be reached somewhere in the middle.  Most people are aware of autism to some degree – even if it is just through Rainman. Some people are accepting of it without really knowing what it is.  For me the real key is understanding; you can be aware of autism, but not really know what it is.  Often this will lead to pity, people being patronising, or a belief that people with autism are either dangerous, or completely pointless trying to communicate with.  A lot of negative stereo-types pervade the public’s perception of autism; they are accepting yes, but quite often they are not accepting of real autistic people.  They might be aware, but in reality they are not aware of real autism, they are aware of the Medias` portrayal of autism.  That is why understanding is so important: you are aware of autism – good.  You are accepting of autism – good.  But do you understand autism?

For more information and advice on Autism/Asperger`s see our free on-line service

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To read some of my autism articles check out my author page http://www.autismdailynewscast.com/author/paddy-joe/

I have co-authored two autism books. Check them out J

http://www.jkp.com/uk/helping-children-with-autism-spectrum-conditions-through-everyday-transitions.html

http://www.jkp.com/uk/create-a-reward-plan-for-your-child-with-asperger-syndrome.html

Paddy-Joe Moran

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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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You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34253.html/ 

For more information and advice on Autism/Asperger`s see our free on-line service

ASK-PERGERS?

Facebook https://www.facebook.com/ASKPERGERS

Twitter https://twitter.com/ASKPERGERS

To read some of my autism articles check out my author page http://www.autismdailynewscast.com/author/paddy-joe/

I have co-authored two autism books. Check them out J

http://www.jkp.com/uk/helping-children-with-autism-spectrum-conditions-through-everyday-transitions.html

http://www.jkp.com/uk/create-a-reward-plan-for-your-child-with-asperger-syndrome.html

Paddy-Joe Moran J

Loneliness among young autistic people, and why this can go un-noticed

Christmas can be an exciting and fun time of year, and yet it can also be a time when depression and suicide rates increase, and people who normally feel lonely or down in their lives can feel even worse.  Being bombarded by constant images of happy people enjoying themselves can`t be easy for somebody who is lonely, and it is loneliness that this blog is about, and how it can sometimes go undetected in younger people.

Why is the problem of loneliness prevalent in autistic people?

Loneliness can affect anybody, but because autistic people can struggle to socialise and communicate anyway, they are more susceptible to it.  It may be that even if the autistic person goes to school or college they find it hard to interact with those around them, and are not included in social groups.  Some autistic people may also find dating and relationships challenging, and so may not be able to get companionship that way.  Having said this a lot of autistic are not lonely, and a lot of lonely people are not autistic.

Why does this sometimes go un-noticed?

The reason for this is probably best illustrated by looking at a scenario such as the one below – take a twenty one year old autistic woman who could go to university, and communicate with people as and when she needs to.  She could have a job, and communicate with people professionally, but may be that is as much as she can do.  Maybe she doesn’t know how to have a laugh, and a joke.  Maybe when she tries to find somebody to talk to about her special interest all she gets is blank looks.  Let’s even suppose that she is invited to nights out or parties – maybe the sheer force of will and energy that it takes her to get up and go in to university or work, and interact with people daily, means that she doesn’t have anything left to go out and socialise.  People may begin to think she is unfriendly, and in the end stop inviting her to things.   It should be stressed that this is not representative of all young, autistic people, but if you can hold it in your mind, it is an example of how somebody can be around people all day, and hold conversations with them, but at the same time still be profoundly lonely.  It might be a cliché, or even the lyric to some cheesy, eighties song, but like many clichés it has a ring of truth to it – sometimes the loneliest place to be is in the middle of a crowd.

What has this got to do with Christmas?

It is a problem that can affect people all year round, and sometimes for their entire lives; a state of isolation in the middle of hordes of people. But at Christmas, when every image you see is of happy groups of people enjoying themselves and socialising, it is little wonder that the feelings can intensify.  Neuro-typical people will probably be going out and socialising a lot more over this time, and many adverts on TV even run with slogans such as `you don’t want to be alone at Christmas`.  Therefore the message that is generally sent out, and drummed in to people is that Christmas is a time to spend with others, and that if you don’t have someone to spend Christmas with there is something wrong with you.  The human mind tends to focus everything inwards, so if there is a problem it is only a matter of time before the person with autism blames them self, and begins to feel there is something wrong with them.  To not be able to find anybody to spend Christmas day with could easily generate feelings of self-hatred – it can be embarrassing, and difficult enough for a person with autism not to be able to find somebody to sit with in a canteen at work or college. As with many other things, there is such a social pressure put on to Christmas that it can make what is already a difficult and complex mix of emotions much worse – sometimes even to the point where it becomes fatal.

(This blog is about raising awareness of the subject of loneliness, and not giving tips on how to deal with it.  However I will post another blog soon that will give tips which may be helpful)

What can people do to help?

The most important thing is to not think that only elderly people can get lonely at Christmas; there may be teenagers who don’t want to spend time with their families, and feel lonely because they have no one to speak to.  People in their twenties, thirties, or any age can feel lonely.  Loneliness, especially over the Christmas period, can be the start of a dark road that can lead to depression, and even suicide.  What society as a whole can do to help is first of all just understand, and realise that it is a genuine issue.  The actual solutions of how to help people to stop feeling lonely are more complex, and difficult to implement.  But if society grasps the concept that people of all ages, genders and races, can have the same sets of feelings, then it would be a big step in the right direction.

The stereo-type of autistic people always wanting to be alone is something that should be out-dated.  A lot of autistic people need to take breaks, where they need to spend time on their own to clear their minds, and there are some people with autism who could happily spend Christmas and even the entire year alone, but this is not all autistic people.  It is hard to face up to other people`s loneliness, and harder still when it is at a time when all you want to do is sit in front of the TV and eat chocolate.  But this blog isn’t even asking people to do anything really, it is simply letting you know – in what I hope is a clear and concise manner- that loneliness is a problem faced by some autistic people, and especially around Christmas time.  If you are involved in the autism community, and can think of anything you can do to help, then you should definitely do it – even if it is something as simple as just talking to somebody.

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

My new book:  http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html 

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And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

The Rain Man Effect

One of the things that annoys autistic people the most, I have found, is when they tell somebody they have autism, and the person responds with `do you mean like Rain Man?` or something along those lines.  I hadn’t seen the film itself until very recently, but after I watched it I thought I`d write this blog.

 I suppose what it`s really about is whether it`s the portrayal of autism in a film which people dislike, or something more than that.  I personally think that it was quite a good film, and I don’t have any real issues with its portrayal of autism.  The fact is that autism affects everybody differently, and there is no reason that Dustin Hoffman`s character would not have acted and behaved in the ways that he did.  You could take argument with some of the generalisations made by the professionals in the film, but it is a film made, and based in the late eighties when people knew much less about autism than they do now – so it is not particularly unrealistic for medical professionals in the film to make sweeping statements.

 What I think most people take issue with is actually nothing to do with the film itself; it`s the fact that people who may have seen the film once, or maybe even have only seen snatches of it, think that they now know everything they need to know about autism.  They think that everybody on the spectrum will behave in that manner.  It is their only real reference point for autism.  It is that lazy attitude that I think people dislike; as if watching one film tells you all you need to know.

Nowadays there are a lot more portrayals of autistic people in the media.  A few years ago all you used to really see was the random autistic characters who were put in to detective shows so that they could conveniently note down car number plates, or remember details from years before.  These seemed to be characters who were created by people with no real knowledge of the condition – simply recycled versions of older characters.  There was a point a while ago when having characters who were supposed to be quite funny, with obvious traits of Asperger’s`, became quite a popular thing.  I don’t find that offensive, as making people laugh is one of the best ways to get through to them, and make things stick in their minds.  Now you have programmes like Derek and The Bridge; with characters who aren’t point-blank called autistic, but blatantly are.  I would recommend these two shows as a good place to start if you want to learn more about autism, because they portray two people who are on the one hand completely different to each other – extreme ends of the spectrum –but in reality deal with a lot of the same issues.  Also, Derek is obviously male, but displays what is normally perceived to be a very female version of autism, whereas the main character in the bridge portrays what is typically thought of as a very masculine profile of autism.; perhaps the reason why, to the best of my knowledge, neither of them has ever been diagnosed with autism on the shows.

Now I am not saying that if you go away and watch these shows you will have a full understanding of autism, because that would be nonsense.  I don’t think you can ever have a full understanding of anything just from films and books – you need to do research.  And more important that any of those things, you need to talk to autistic people in real life.  The Bridge, Derek, and Rain Man, amongst others, are good portrayals of autism, but because the spectrum is so vast, and complex none of them give you a complete picture.

You also get characters like Roy Cropper in Coronation Street, who is almost a mix of male and female profiles of autism,  Again, I don’t think there has ever really been anything said about whether he has autism or not, but it is fairly obvious to see if you know anything about autism, that he does.  I think that as a lot of people do their learning through what they watch on T.V. or the cinema, the more varied and well-acted performances of characters with autism, or autistic traits there are in T.V. and cinema, the better.  Basically, there is nothing wrong with Rain Man; the problems lies with people judging an entire group of individuals on the basis of one movie.

If you need any more help or advice about Asperger`s, or simply want to talk about it check out our free help and advice service ASK-PERGERS? On Twitter https://twitter.com/ASKPERGERS Facebook https://www.facebook.com/ASKPERGERS?ref=hl

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762