Tag Archives: dyspraxia

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

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

University help.

I wrote a blog a little while ago about how stressful, and difficult I was finding the process of getting support for my autism, dyspraxia and dyslexia at university.  The process has actually become more difficult as it’s gone on. I mentioned that despite having official diagnoses of Autism, dyslexia, and dyspraxia I still had to go back and be re-tested because these were diagnosed before I was sixteen – despite being life-long conditions.  I went for this assessment recently.   It was supposed to be for approximately an hour and a half, but I ended up being there for nearly two and half hours.  I have to say the entire experience was unpleasant, and above all unnecessary. First of all I resented having to be tested at all, considering I had indisputable proof that I have these conditions.  But rather than sitting down and simply asking me what I needed help with, and then getting on and helping me, it was almost as if I had to go through the whole process of being diagnosed again, simply to get the support I am entitled to.  They said that the tests were to see if I still had dyslexia and dyspraxia, or if I had a specific learning disability. I have to say this confused me because I always thought dyslexia and dyspraxia were specific learning disabilities. But to tell the truth, it wasn’t even the pointlessness of the situation that annoyed me the most, it was two other things: the first one being the embarrassment factor – the fact is tests like this are designed so that you`ll fail them, and they keep going until you do fail. So this in itself, by its very nature, is embarrassing – a complete stranger testing you on stuff until you finally fail.   But for me, I simply felt that the entire thing made me look much less intelligent than I actually am.  I was first published when I was twelve, and currently write for three on-line newspapers as well as this blog. I know my handwriting and spelling are poor, and this is one of the first things I told them, but the results of the test seemed to imply that I couldn’t read out loud, have a poor grasp of language, and I was told I need to read a lot more – when in fact I have been reading fluently since I was three, and always have at least two or three books on the go. In fact I`ve read more than anyone I know of my age. I’ve also been writing in one form or another – even if it is simply dictating the words – virtually every day since the age of eleven. Which leads me on to my second point; this was a test for dyslexia and dyspraxia, but I don’t feel my autism was taken in to account in any way, shape or form.   I was somewhere I`d never been before, with somebody I`d never met.  I wasn’t told what order the tests would be taking place in, or even specifically which tests would be happening.  As I said the test took an hour longer than I was told it would take, so I was unprepared for this. By the time we started to get to the halfway point – due to my autism – I was finding it incredibly hard to concentrate on what was going on. Therefore, things that I would have ordinarily found simple, such as reading certain words, proved impossible, simply because I couldn’t focus on what I was supposed to be doing.  This got worse as the test went on, to the point where I could barely even attempt some of the tasks that were supposed to be measuring my dyslexia, because of how bad the symptoms of my autism had become.  I don’t know how these kind of tests are for other people, or what others might have gone through to get help at university, but overall I am disappointed with the process so far. It reminds me much more of school – where you have to fight for even the most basic assistance – than college, where help was given freely to me. Also, making somebody pay to be retested for something they`ve lived with their whole life is ridiculous; if I go up to somebody and say that I have dyslexia, and I have a certificate from the Dyslexia Association confirming this, and I’ve had help and support for it from professionals as recently as last year in college, why should I then have to pay, and go through the process of a stressful reassessment simply so that they are happy with what I am saying to them?   If I have proof of something, and they don’t believe it, surely it’s up to them to come to me, and prove that I am wrong rather than me having to prove that I’m right.  I fully understand the concept of having to check what somebody`s specific needs are to give them the correct help, but it is a pity that people who work at such a high level don’t seem to understand that the best way to find out what somebody with a disability needs is to go ahead and ask them, and then to provide it.  Accommodating my needs is their job. Why should I have to jump through hoops before they will start doing it? I`m sure a lot of other people with conditions such as autism would feel the same way if they were in the position I`m in.  And this is what irritates me the most,  the fact that it has taken such a ridiculously long time – we had appointments so that we could talk about a form that they would send to me to fill out, and send back to them so they could send it to somebody else, so that I could meet with them and do a test, the results of which would be sent to somebody else who I would then meet with, so that they could tell me who I could meet with to actually answer the questions I`d asked in my very first meeting – when really, in my view what should have happened is I should have gone along to one meeting with the evidence I already have of my conditions, they should have told me what support they could offer, and listened to what I was saying I needed. We would have decided on mutually agreeable terms, drawn up a small programme which they then would have put in to place, and that would have been the end of the matter.  As it is, I`m just under two months away from starting university, and am still no nearer knowing if they will accept my diagnoses of autism, dyslexia and dyspraxia, than I was when I began this process five months ago.   I am not singling out any particular individuals for criticism, it’s just the way the system is set up in general.  It`s as if somebody sat down and said ‘how can we make the process of somebody with a disability getting to university as long and time consuming as possible?`  Overall, it has all been a bit of a shambles.

My name is Paddy-Joe Moran. I am a 19 year old autistic author of two books, and co-founder of autism advice service ASK-PERGERS?If you need any more help or advice about Asperger`s, or simply want to talk about it check out my free help and advice service ASK-PERGERS? On Twitter https://twitter.com/ASKPERGERS Facebook https://www.facebook.com/ASKPERGERS?ref=hl

Also to read more from me go to my blog https://askpergers.wordpress.com/

And have a look at my books (at the time published under pseudonyms, but I did co-write them trust me on that!)   http://www.jkp.com/catalogue/book/9781843106227

http://www.jkp.com/catalogue/book/9781849052757

 

 

Help with autism for University.

Over the past few months I have been preparing to start university.  Because I have been on a gap year since finishing college I`m having to sort out a lot of things with the university without the help of the college.  One of the major issues we`ve had to sort out is what help and support I am entitled to.  I have Autism, Dyslexia and Dyspraxia, and therefore it is reasonable to assume I might need a fair bit of help in university.  The problem that I have found isn’t so much that there isn’t help available – I just take issue with the process you have to go through to get it.  The main problem I have is that you are expected to provide a post-sixteen diagnostic assessment of anything you are asking for support with.  That in itself doesn’t seem to make any sense, as all three of these issues are life-long – their diagnosis doesn’t change over time.  My diagnoses for Autism, Dyslexia and Dyspraxia have always been accepted in the past – why they become invalid when I try to apply for help from university I am not sure.  The vast majority of people are diagnosed with these things when they are under sixteen.  Initially I was asked to provide a post sixteen diagnostic assessment for all of my conditions.  This would have cost a lot of money, and also taken an incredibly long time to get done.  People can wait months, or even years for one diagnosis.  I would probably have been finished with university by the time I’d been re-diagnosed for three separate conditions!  Eventually they agreed to accept the diagnosis of Autism, but not of Dyslexia or Dyspraxia.  So we were told that I would need to go and be reassessed for Dyslexia and Dyspraxia, at a cost of three hundred pounds.  Although you get most of this back, in the long run you still end up paying seventy five pounds for a two and a half hour assessment, so somebody you have never met before can tell you a lot of stuff you already know about yourself – which you could have told them in two and a half minutes.  What I found when taking the assessment was that due to the lack of structure, or knowledge of what I was going to be asked, my autism made things that were normally quite easy for me, difficult.  As I say, it was two and a half hours with no break, and I really don’t think you can get a full assessment of my needs from that.  A much better way would have simply been to ask me what I need help with, and then to provide it.  Perhaps an assessment of what I am struggling with now would be alright, but at no time did anybody imply that was what this was – I was told it was an assessment to see if I still struggled with Dyslexia and Dyspraxia, or if I had what was referred to as a more general issue.  Now as I have said before, I am not a hundred percent sure what this means, because both these issues are life-long, but also I don’t believe it should be for the individual to prove they have a condition, when they already have all the evidence they could possibly need with a diagnosis.  Overall I think the entire process has been a lot longer, more complicated, and more stressful than it has any need to be.  I also think it shows a lack of respect for people with disabilities or learning disabilities, as it basically says that even if they come right out and tell you what they struggle with, and want you to help them with, you should do your own tests and decide what you think they need help with, and implement that instead.  Yes, evidence is obviously needed to make sure nobody claims extra time, or benefits unjustly, but why aren`t certificates of diagnosis evidence enough?  Or the words of the three professionals who have worked with me to help with my Dyslexia and Dyspraxia over the years?  Apparently they count for nothing as well.

Anyway, this blog is more of a moan than anything else, but what do you think?  Do you feel it’s fair?  What experiences have you had when trying to get support for your autism, or other issues?  Let me know in the comments below.

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