Tag Archives: aspgers

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

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

Advertisements

Autism and the Puzzle Piece ………..

images

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

.images8X6I3OZJ

  • 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.

imagesWW6IFQ8Q

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)

images

  • 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.

imagesTCIL00ML

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.

images91850KEC

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?

th

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?

imagesQ33FI5MS

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

The ice-bucket challenge – Is there a right and wrong way to raise awareness?

Please note: this is not a blog addressing any issues related to the charity itself.  I understand people`s concerns over testing on animals, and the challenge being done inappropriately, but that is not relevant to the subject of this blog.

If you`ve been on-line at all over the last week or so there is no way that you can`t be aware of the ALS ice-bucket challenge.  This was created to raise awareness for Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,”  Thousands of people from across the world have filmed themselves pouring buckets of ice over their heads – people such as George Bush, Stephen King, and Cristiano Ronaldo, along with a host of other celebrities.  According to the official statistics it`s raised an incredible amount of money, but several people have complained about it.  These people say that the actual message is being lost, and that pouring water over yourself is a silly way to raise awareness.  From my point of view I simply looked at what people who suffer from the condition have to say – and everything I read by people with this condition, and their families, was extremely positive.  The idea that you could get hundreds of celebrities from all over the world to endorse your charity, would have been impossible without the use of the internet.  Of course some people have simply picked this up as a thing to do without actually thinking about the message behind it, but they still mention ALS in their videos – the message is still getting out there, whether people realise they are spreading it or not.  The use of social media to get so many people involved really was a stroke of genius from the people who created it.  But it leads to the question, is this the right way, or the wrong way to raise awareness?

If the charity raises money, and they get endorsed by hundreds of celebrities – all of whom are probably followed by millions of people on-line – how can this be a bad thing? The ice-bucket challenge is enough of a challenge that people will feel they have accomplished something, but easy enough that anybody can participate.  It`s fun, and after you`ve done it, why would you not want to nominate three other people?  If you had to do it, why shouldn’t they?  It also plays on a level of narcissism in society – some people love to be seen doing stuff for charity, much more than they actually enjoy doing things for charity.  The ice-bucket challenge lets you not only do a good act, but put it out there for the world to see.

Also, it works.  I had no real understanding or knowledge of this condition until I started seeing the videos on-line, then I googled it, found out about it, and read a lot written by people who live with it.  Now there is no way that I am the only person who has done this.  In reality thousands of people are probably aware of ALS, who weren’t before.  It is not done in a way that would inspire pity instead of respect.  It is simply saying, `we`re a charity, we need money, please donate`.  Things on the internet often go viral; whether it`s a picture, a saying, a certain activity.  They are huge – as in millions and millions of people seeing, and participating in them – in a way that things could never have been this big before.  For the most part these things are funny, and have no actual meaning or relevance behind them.  The fact that something that actually helps to change people’s lives for the better has taken off in this way, is very positive.  And even though I am usually rather cynical about things like this, I have actually found myself getting annoyed at people who criticise it.  Obviously if you were already fully aware of ASL before, and it has already affected your life in some way, this may seem like a silly way to raise awareness.  But as I said before, the voices of the people who actually live with this condition are what matter the most, and they – to the best of my knowledge – are firmly behind this.  I have read several interviews with people who either have ASL, or have a family member with this condition.  They all say that it is an under-funded, virtually unknown disease that has a devastating and terrifying effect on people`s lives.  A few people giving quietly is good, but it won`t have anywhere near the impact that a challenge like this has had.  The fact is, people who are going through this disease endorse this challenge, and in reality, their opinions are the only ones that truly matter.  I can`t say that my knowledge of this condition is perfect now, or that I have checked the charity out fully, and there may well be issues I discover as I look in to it in more detail.  What I can tell you though, is that virtually everybody on-line is talking about ALS – people who I never thought would do something such as tipping a bucket of ice cold water over their head, have been doing so happily – and these are not the kind of people who would do something for attention, or simply to jump on a bandwagon.  These people, for the most part, have donated money as well, and overall I can`t help but view something like this as a positive.  It seems to me like a very clever way to utilise the power of the internet.

The TV, radio, and newspapers are old-fashioned ways to get through to people. If you want to advertise, or raise money and awareness now, you use the internet.  A lot of people do all their TV watching, a large chuck of socialising, and spend much of their free time on the internet.  People can`t avoid something that goes viral – everybody sees it. Also challenges such as this seem to be much easier for people to deal with than an advert which shows the harsh realities of real life.  Things such as the ice-bucket challenge won’t cure all diseases, or solve all the world’s problems, but they will undoubtedly raise a lot of money.  People of all ages, from all of the countries in the world, will see these things. People don’t feel as if they are being put under pressure to donate money – they do it because they want to, because everybody around them is doing it.

 By all accounts, the level of money raised in only two weeks in unprecedented.  I am sure that in the wake of this many charities will launch challenges of their own, and in my view, using social media and the internet to raise awareness and money, is the future.  Is this particular idea perfect?  No it isn’t.  But can it lay the framework for charities reaching wider audiences, and raising more money in the long run?  Yes, undoubtedly it can.  And how can that be anything but a positive development?

For more information about ALS go to http://www.alsa.org/

 

 

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? 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

Excuses Vs Reasons.

Autism is not an excuse – it may well be a reason – but it is never an excuse.  What I mean by this is, if something occurs such as a meltdown in a public place, you don’t need an excuse, you have a perfectly valid reason for your behaviour.  You can choose to share this reason with the people around you or not, it’s up to you, it doesn’t matter, it`s none of their business anyway.  But there is a fine line between things that you genuinely can’t help, and creating excuses for things that you can help.  A lot of people claim that they get in to trouble socially because more people aren’t autism aware.  But sometimes I think that the people who need to be most autism aware are the people with autism themselves – I say this because we need to be aware of the impact we can have on those around us – of course some people can’t be aware of their own behaviours, much less control them, and these individuals don’t need excuses, because they have perfectly good reasons – but if you have autism, and you know you have a tendency to offend people, but want to maintain your friendships, just try to think about what you are saying before you say it.  Don’t think to yourself `would I find it offensive?` think about what people may have found offensive in the past, and then decide if you want to go ahead and say it.  I am not for one second trying to say that this would be easy, but if you don’t try to think about the impact of what you are saying before you say it, then don’t be surprised if some people react negatively to what you say.  Having autism doesn’t give us free-reign to say whatever we like to people.  It might be thought of as cute if a child does it, but if a grown man or woman goes around telling everybody exactly what they think of them – we are probably going to get in to trouble at some point.

  I have had a lot of people tell me that they don’t struggle to start friendships or relationships – but maintaining them is almost impossible.  And largely they can’t see what they have done wrong.  It is very, very rare that an argument is ever entirely one person’s fault.  We all know that autism, by its very nature, influences our behaviour, so if you are in a friendship or relationship the person probably knows that from time to time something you do or say is out of your control.  But you also need to be aware of the impact your behaviour may have on them – for example, if you move in with a partner and you know that every time you get in from work you are so overwhelmed by all of the contact and social interaction of the day, that you often end up having outbursts if you then have to talk with your partner, you should explain to them that you need half an hour alone, rather than having to talk to them straight away and risking having an outburst, and shouting at them.  They might be perfectly aware that you have autism, but if you don’t explain how it affects you, what can they do to help?  You need to talk to the neuro-typical people around you that you are close to, and you trust.  Everybody in life has to compromise a bit.  People who go through their life saying `this is who I am, I don’t change anything for anybody` are either liars, or are very difficult to get along with.  To maintain any kind of relationship in life; be it a friendship, a partner, or a relationship with your own family, we have to be willing to compromise – that is the foundation of all healthy relationship’s – whether you have autism or not doesn’t come in to the equation.  Obviously with autism, our behaviour may be a lot more difficult to change – I can say that from my own experience – but we would be incredibly selfish if we didn’t even try for the sake of the people we care about.

One thing that you have to think about is how much the neuro-typical people you are close to might be compromising, and accepting parts of your behaviour that they find difficult to live with; maybe they put up with your outbursts or sensory overloads, maybe they deal with the fact that it is harder to go out and do things spontaneously, and maybe they restrict the number of their possessions that they leave around because they know you need your things around you.  There might be all kinds of things that they are changing or holding back – compromising isn’t easy for anyone, whether they are autistic or not.  If the people we care about are doing things to make our relationships easier, then we should try to do the same.

Obviously you might not be able to tell by yourself what it is you need to do, in which case, don’t be afraid to ask people for help.  You could ask people you are already close to what they think you can do to improve new friendships or new relationships.  You can ask people if there is anything that you do that annoys them, and then change it if you can.  The people who love you may be prepared to overlook or accommodate things you do, but not everybody will be. It is not about making yourself any less autistic, it is simply about trying to make your life easier, and about being able to maintain relationships that are important to you.

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