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How Dyslexia impacts on my writing and my confidence.

Most of what I write on this blog tends to be about autism, but I wanted to take the time to talk a bit about my dyslexia, and how it impacts on my work. I have written about having dyslexia in the past, but to tell the truth it’s not something I think about all that often. I get so caught up with my autism, and how that impacts on my day to day life that I tend to forget that I am dyslexic and dyspraxic too. However, at times I cannot help but think about it. When I work I am keenly aware of my dyslexia, and how much it slows me down and frustrates me.

My work is my writing; I write blogs, and articles about autism and disability in general, and, as yet unpublished, short stories and novels. I have co-written and published two autism books as well as writing my own autism-related book, and had that published last year. Like everyone who writes I go through times in my life where it is hard to write, and where I don’t get much work done at all. But most days I write something, and that has been the case for over ten years now, and yet I can’t spell or hand-write. If I were to be tested I don’t know what level my spelling would be at, but I know it would be poor. There are very few words I can actually spell right first time, and when it comes to spelling out loud that number goes down even more. When I type most of the words I get right I do so without thinking; my fingers just hit the keys. If I had to tell you out loud how to spell half the words I do manage to get right, I would not have a clue.

It will be hard for a reader to fully understand quite how bad my spelling is; by the time you read this blog it will have been spell-checked and edited by my Mum, so most if not all of the spelling or grammar mistakes will be gone. I could publish a blog without any spell-check or editing for you to get a full idea of what I mean, but I don’t think you would be able to read it. A lot of the time the inbuilt spell-checker does not even know what I am trying to type. It changes the word to what it thinks it is meant to be; sometimes to a word that is so close to being right that I don’t even notice it`s wrong until someone points it out – other times to seemingly random words. When this happens I have to resort to googling a word (as Google seems to have more luck working out what I am trying to say) and pasting it in to whatever it is I am writing.

My spelling has always been poor, and I am sure anyone who is dyslexic knows that feeling of frustration when you try over and over again to spell a word without getting any closer. But there is an added level of frustration when it impacts on what I do for fun, and my work. I write at a much slower pace than I would if I did not have to worry about my spelling, but its more than that – it’s the lack of confidence in my own work. A lot of the time I do not even feel like I can put a tweet out there without having someone else check it first to make sure I haven`t spelt everything wrong. I can’t ever see myself feeling confident enough to write a blog and publish it without having my Mum, or someone else check it over first. When writing is what you do it can be unbelievably frustrating to know that you are reliant on someone else to make even the most basic of your work understandable. I am a published author, and yet I do not even feel confident to send out a tweet on my own. As for making notes or hand-writing anything, there is next to no point in me even trying to do this anymore. I cannot even read my own handwriting! I have to type and I can type quite fast, so things now are a lot better than they were a few years ago, but there is still this underlying feeling of frustration at my poor spelling.

I don’t want this blog to be full of self-pity, but I felt that I needed to point out how much extra work myself, and fellow dyslexic writers have to put in to get our work ready to be read. There is a part of me which thinks that even with some of the difficulties that come with my autism, it’s my dyslexia that gets me down the most. That’s what makes it hard for me to do what I love, and that’s a huge part of what makes me so reliant on other people when it comes to my work. And even though I have gotten so used to it I might not think of it much, it’s the effects of my dyslexia that keep impacting on me day to day.

I don’t have any practical advice to leave you with in this blog as it was intended more as a way for me to vent some frustration, and explain how hard writing these blogs can be. But I might try and put together a list of tips and things that have helped me over the years, as well as things I might try in the future, and post that at some point.

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

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?

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

Autism and Sameness.

Everyone knows change, however small, can be hard for autistic people.  But what a lot of people don’t think about when contemplating change is the changes that can take place in one room. This can be something as small as an item not being put back quite right after cleaning. Things that might not even be noticed by someone without autism, but they can have a real impact on autistic people.  I found things such as a lamp being moved from one place to another very hard to deal with when I was younger.

Furniture being rearranged might not sound like a big deal, but to someone with autism it can be. If they are used to the room being a certain way then seeing it all changed around can throw them.  For me I know where my chair is, and what view of the TV I get from it, how easy it is to use my shelves, and things like that.  So just that one small change gives me a whole lot of new things to get used to.

A new piece of furniture being added can have the same impact.  Add to this the fact that it might mean an old piece is thrown out, then you can see why it’s so much for someone with autism to get used to.  It’s not to say they won’t like the new furniture, but it changes the look of the room, and is therefore something they need time to adjust to.

For me – and I am sure a lot of other autistic people – the big one is having my own things moved, and then put back in the wrong place.  But for me the wrong place could just be a few inches to one side. It’s something other people might not even notice, but to me it is a huge thing.  When I was younger I would have meltdowns if my Mum put something of mine back in a slightly different place after cleaning.  Even now I have to admit I would not be too happy about it!

I am older now, and I do find some change easier to deal with, for example changing a room around.  In fact I am always changing things around in my own room.  But I still find it hard to have my belongings touched or moved.  I like to put DVD’S and books on the arm of my chair, and I find it hard when someone else moves them even if it is just to clean. I won’t have a meltdown, but I will get annoyed and tell them not to do it again.

I think most of this stems from having a good eye for detail. I and many other autistic people can pick up on where a book was on the shelf, and the fact that it has now changed places.  We know if our view of the TV is off as someone has not quite put it back right after cleaning behind it.  And being able to notice this can make things hard. There is also the need to control our environment that a lot of autistic people have.  We experience this as we often find ourselves at a loss with the world, and being able to control some part of it – even if it is just a room, or our own belongings in that room – can help. When we see that changed we feel a loss of control.

Change of this kind cannot be avoided; there is no way around that. But there are ways to help.  One is a level of respect from family.  Moving the belongings of someone who is autistic can have a very real impact on them; there are genuine reasons why they have those items where they are, and why they would be upset if someone moved them.  Try talking to the autistic person, or at least give fair warning before you move stuff.  And as always with autism, planning can be key; talking about what is going to change in a room, how and when.  This won’t solve all the issue but it will help.

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?

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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

Dyslexia.

I spend a lot of my time witting about autism, how it impacts on me and others, but it`s easy for me to forget that I don’t just have autism. I also have Dyslexia and Dyspraxia, and it`s about time I said something about those.  Autism tends to dominate; it`s what I write about, it influences my day to day life more than anything else, but my dyslexia gets me down more than autism ever has.  Well it used to.

I should start at the beginning, I was able to read well from a young age, and that could almost hide how much my dyslexia did impact on me.  It took me years to even be able to write my own name. I still to this day can’t spell basic words.  Some of them are starting to stick, and I can spell better now then I ever could before, but I am twenty – I should have been spelling better than this when I was eight or nine.  I can still recall with absolute clarity that burning embarrassment of not being able to spell, or having someone look down at a page of writing that is basically sideways slanting gibberish.  For years my Mum tried to help me; she came up with all kinds of clever devices to help me learn to spell and improve my hand writing. The impact?  Well there was some, but it was a long, hard journey.  In college I had help with my dyslexia too, but still no huge change.

I have to admit I am finding it hard pin-point times, and dates when this has impacted on me as you might be able to tell, but one word keeps coming to me – Education.  Not the time I spent being home-educated, but the few years at school and college I had. It seemed that the aim of both was to get me writing like normal – school pushed that a lot more, and in a much more heavy-handed way, whereas college allowed me extra time in exams, and did offer me help.  But I still had to go once a week and do the same stuff I had been doing from the age of eight or nine to try and get better hand writing.  I think university is the only education esablishment where I feel my dyslexia does not impact on me.  The amount of help I have been given there is well woth talking about.  I have someone to take notes for me, a laptop with programs on that allow me to talk in to a mic, and watch my words appear on the screen, and much more.  The impact of this?  I am able to think about the work and not about spellings!

Where am I now?  Well I am at peace with the fact that I will never be very good at handwriting or spelling.  That might sound a bit odd.  You might be thinking “But you`re a writer! You write books and if all goes well you will be writing for a living one day.  How can you do that if you can’t spell”. Well it`s easy.  We are in 2015 now – there are spell-checks on computers, and as I said above I can just talk, and have a lap-top write up my words for me.  Over the years most of my work was written by me dictating, and my Mum typing it up. Without her doing this I would not be where I am today.  The point is I will always find a way to write. I don’t have to be good at spelling or have neat hand writing to be able to write.  So I don’t feel the impact of my dyslexia much anymore, but that does not mean it`s not there – just that I can live with it now in a way I could not when I was younger.

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?

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

Why I`ve decided to take a year out of university ….

I was due to start my second year doing film studies at university at the end of this month, but I have decided to take a year out.  There are two main ressens for this.  One is my work. I wanted more time to work on my writing, and autism talks than I would have got if I was going in to the second year of a university degree.  And the second reason is that the last five or so months have been so stressful, and full of difficult things that I need a break.  But underpinning all of that is why my autism affected my time at  university.

I have to say I got a lot of help when I first enrolled, and I can’t fault my university for the way they have helped with both my autism, and dyslexia since classes began.  But I think my conditions still made my time there harder than it would otherwise have been.  I don’t drive so to get from my house to my university I have to get two trams.  This is OK when I am traveling mid-morning to mid-afternoon, but when the lecture does not end until five, or starts at nine I ended up traveling right in the middle of rush hour.  As the year went on it became harder and harder to do both the traveling, and the lectures in the same day.  If I had a three hour class the last thing I wanted was to get straight on to a packed tram, and have to fight my way off only to get on to an even more packed tram.  And if I had got on the two busy trams in the morning I felt too overloaded to be able to pay close attention to my class.  I also found it hard to balance my university with my autism-related work.  My aim is to one day make a living from my writing so I feel that it is something I need to put a lot of time in to in order to make this happen.  But I found that even in my first year I was expected to do so much reading and work out side of the class room that it ate in to my time for writing, and planning talks. Now I do feel that if the traveling, and overload after class had not been an issue this might have been OK.  But once I had been to a class I found it hard to do anything else that day, and if I knew I had to go out to a class I found it hard to do anything in the time leading up to that.  This meant that three days of the week were spent doing nothing, but being in university. Add to that the fact that each class came with a group project that meant you had to come in on other days, and meet up with your group.   I felt I had hardly any time at all to do what I think of as my real work.

So in the end I decided to take a year out. I want to take some time to relax, and try and de- stress, but I also want to use this time to work, and write a few more books.  It took me a while to decide, but I feel now that I made the right decision.

Why I haven`t blogged for a while ….

Over the last few months I have not been blogging much, as you might have noticed.  There are two main reasons for this: one is that I have just been too busy with life to have any time to work on a blog, and the other is that when I did have time to write I had to spend that time working on articles, and books.  Without going too much in to my family`s business there has been a lot going on this year:  Death, near death, illness, and surgery.  It has been quite a hard year, but this is not a blog for moaning about things like that.  All you need to know is that what has been going on has taken up almost all of my time and energy.   Added to this is the fact that I had the second half of my first year of university to get out of the way, and it meant I didn`t have a whole lot of time left over to write.  But the time I did have I ended up spending working on books, and article.  This means that I have somehow managed to get a deal to have a new book on autism published, finished off writing my horror novel, and had quite a lot of articles on autism published.

But I enjoy blogging, and I want to get back to posting something at least once a week if I can.  So this is just a small post to say that I will try and get back to blogging soon, and to ask if there is anything you want to see me talk about on here?  It can be a general autism issue, or something about my life or ASK-PERGERS itself.

Paddy-Joe.

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?

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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

Inclusion in Mainstream Schools Vs Special Needs Schools

 

Often parents of disabled children will have to make the choice about whether they want their child to go in to, or continue, in mainstream education, or to attend a special needs school.  Some people argue that special needs schools are the best places for children with disabilities as they give them a much better chance of having a full, and complete education.  Others argue that segregating disabled people from the rest of the community during their childhood can not only be detrimental to them, but can also be damaging to those left in mainstream education, because it fosters an image of disabled people being removed from normal society.  Below are some of the possible pros & cons to each argument.

Should children with disabilities attend Special Needs Schools?

Pros:

The most obvious positive is that these schools might be much better equipped to deal with each child’s specific disability. Because they are set up to cater for children who are disabled, or who have learning disability, the staff – by and large – should be experienced and knowledgeable.  In practise it should remove any ignorance from the teaching.  Along the same lines special needs schools may teach things that are more important for disabled students to learn, for example, an academic education is of course still important, but if somebody struggles to go out and be independent or to talk to other people, having specific lessons in this can be just as important, if not more so.

Obviously bullying can still take place in special needs schools, but it happens much less often than in regular mainstream schools.  This can help children to improve with their confidence and self-belief, as well as helping them become more tolerant due to all the people around them having different disabilities and needs.

The school will probably also be more tolerant of certain things such as having time off, or having to have a specific routine that cannot be changed.  This ties in with the first point about experience.  Having somebody who has read about a disability can be useful, but a lot of teachers at special needs schools may have disabled children themselves, or have worked with disabled children for many years. Special needs schools (in principle) provide an environment crafted specifically to meet the needs of disabled students, so how could it be a bad thing?

Cons:

The most obvious con to special needs schools is that it removes disabled children from the mainstream – but this actually has multiple smaller issues attached to it, that can be broken down.  The first of these is that a lot of parents of disabled people, and disabled people themselves, will end up spending years battling to be included in mainstream life, and many see opting out of this at such a young age – possibly before an informed decision can be made by the young person themselves – is laying the groundwork for a lot of difficulties later in life.

There is also the fact that it may deprive disabled children of a lot of experiences they may otherwise have.  Some of these experiences might not be easy, but it could be argued that it is not right to try to shelter disabled children from the realities of the real world that they will have to spend their lives living in.

There is also the issue of how society in general will perceive disabled children if they are separated.  It is hard to argue – especially to children or teenagers – that disabled people are part of the same society as them, when they see them all as being put in one building away from so-called normal society. The argument goes that in order to breed tolerance, and eventually achieve equality, people in the mainstream need to be around disabled people from a young age, so that this becomes the norm; if there is too much separation it will become something strange and unusual.

It is also argued that although special needs schools mean well, they sometimes tend to prepare children with disabilities for a life in which they will need constant care.  They say this means that instead of learning how to get by in the so-called real world, they learn how to live a good life for somebody with a disability – rather than a good life in general.  The main point of this argument is that some say special needs schools define children too much by the fact that they are disabled, and also make that a bigger deal than it would be if they were left in mainstream education.

So what about leaving children with specific, or additional needs in mainstream education?

Pros:

One of the most widely referenced positives of leaving a child with a disability or learning disability in mainstream education is that they will get a better grasp of the real world, and of how to interact with others.  They might not be able to go out and do the things their classmates can do, but they will be around a wider mix of people, and also be able to experience a less sheltered existence.

Another widely held belief is that by not segregating disabled students from their peers it can breed a much more tolerant attitude.  If people experience being around somebody with a disability day to day, then it may just become the norm; other students would be able to get to know disabled students for who they are, rather than just the fact that they are disabled.

Some parents also believe that their children become much more confident after spending time in mainstream education.  They feel that there is a stigma attached to special needs schools, and that by not attaching this to their child they are helping them to become more happy, and confident in their life.

Cons:

A lot of mainstream schools are simply not equipped to deal with people who have disabilities, or learning disabilities.  This can result in these students not receiving the education they deserve.  Also it can lead to teachers behaving irresponsibly, and sometimes even downright cruelly towards students.  There are countless cases of neglect, and unpleasantness by teachers towards their disabled students.

There is also a greater risk of bullying.  The vast majority of people with a disability or special needs who have gone through a mainstream education report being verbally, or physically bullied on more than one occasion.  Obviously special needs schools will have bullying as well, but incidences tend to be lower.

Often the children themselves find mainstream education a challenging, and sometimes tortuous experience.  This could be for a multitude of reasons.  But whatever the reasons happen to be, a large proportion of students who have a disability dread having to go to school, but often when they go to a school that specifically caters for disabled students they find the experience much easier.

Conclusion :

Looking at the arguments for, and against both inclusion in mainstream education and special needs schools, it seems that there may be two correct answers – one is an ideal situation, and one is a situation that makes the best of reality.  Ideally there would be no need to split students with disabilities and learning disabilities from their mainstream peers, so it is easy to understand the people who don’t like special needs schools.  But if you actually take the time to look at the reality of the situation, you can see that students with special needs might just not be able to keep up with the class, or might need a specialist kind of help that mainstream schools simply can’t provide due to budgets, or lack of training – for some people even a general special needs school might not be enough, and they might need to go to something like an autism-specific school.  There is also the issue that not all special needs schools will be idyllic.  Some of them will have lazy teachers, or bad practise.  But that is not a criticism against the institution as a whole.  It would seem that mainstream schools need to do much more to be able to support disabled, and special needs students.  Whether that means more awareness among teachers and students, to more money being allocated on budgets.  Not in every case, but in many the school system does let disabled students down, and this is unacceptable.  But even if there are wholesale changes and improvements in mainstream education, special needs schools will still have a large role to play in catering for the specific needs of disabled students.  The concept may sound like segregation, but in reality it is a segregation that the student themselves will be able to opt in to or out of, and the student can still interact with non-disabled people when they wish to.  So yes, even though it would be different for everybody, it would seem that special needs schools are largely a positive thing, and that they can be incredibly beneficial to disabled students.

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

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

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

 

[jm1]

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

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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/ 

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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

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Paddy-Joe Moran J

January Meltdowns …..

Christmas and New Year have been fun, but also quite stressful.  I think however old you get, or however many strategies you put in to place, this time of year will always be difficult if you are autistic.  The amount of change and transition, plus the sensory issues means that Christmas and New Year can`t be anything other than a difficult time.  This doesn’t mean it can’t be enjoyable as well.

For me, I finished my first semester at university, and then had the change, and transition of Christmas and New Year.  All of these things together meant that my behaviour, and mood was affected quite severely.  I began to have more meltdowns than normal, and these also increased in severity.  I don’t think that this is uncommon at all among autistic people.  In fact, I think you would struggle to find someone who doesn’t get like this after Christmas, or during Christmas.

Early January can actually be the most difficult time because at least during December there are the positives of Christmas and New Year, so the good comes with the bad.  But January can be a pretty miserable month for people anyway – everything goes back to normal.  While this can be a positive thing, it is also not the easiest thing to deal with for anybody, let alone somebody with autism.  From my point of view it is even stranger as I don’t actually start university again until early February.  All my assignments are handed in so it is as if I have transitioned to another stage – it`s kind of a holiday, but not really.  I am not complaining about getting so much time off, it is just a little bit odd as I was just getting used to university, and I am sure that in some way this must have contributed to what`s been going on for me.

December is a strange time of year for people with autism and their families.  It is very positive and there is a lot of fun to be had – I am not trying to take away from this at all – but I also think it is the most difficult time of year.  I have written about why this might be previously, and I am sure everybody reading this will know anyway from personal experience, but for me early January has always been a bit more difficult.  It is harder to find the positive edge in all the changes and transitions that are going on, but it is possible.  It may be the case that some people are excited to get back to their old routine; may be they want to see friends they`ve not seen for a while?  There could be all kinds of positives to the transition back to everyday life, but it can still feel overwhelming.

The other thing to remember is that while meltdowns are not good – and it`s always best to ward them off, or at least resolve them quickly if possible – just because they get worse in January doesn’t mean that they will stay at this level for the rest of the year.  Things pass, and calm down.

In order to make sure things aren’t too much of a problems in December and January it is important to plan far in advance.  I think last year, may be because I am older, or simply because we were so busy, we didn’t put anywhere near as much planning in to Christmas and New Year, and the transition back to everyday life as we normally do.  And my Mum and I have both felt the effect of this.  We created strategies and techniques to make this transition easier, but for some reason we didn’t put them in to place this year.  My Mum was diagnosed with autism in the build-up to Christmas, so obviously this had quite a big impact on her life, and mine.  But one positive to come from this is that going forward in to Christmas and New Year this year, we can look at not only how it might affect me, but how it might affect Mum.  We both obviously struggle with these things.

What I am trying to say in this blog isn’t anything particularly negative; I just think that it`s important to make the point that things such as the stress created by change don’t simply go away as people with autism get older. Strategies and techniques are not things simply to be used in childhood and then left, especially for things like Christmas which only comes around once a year.  There is so much time in-between each event that the techniques and strategies need to begin afresh every time.  Even though we didn’t take our own advice for the Christmas and New Year just gone, hopefully some people reading this will have done, and had a more peaceful Christmas and New Year holiday than we did.  I wrote lots of articles and blogs in the lead-up to Christmas offering advice and tips that we know work – and we will certainly be using them next Christmas and New Year J Paddy-Joe

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