Tag Archives: autsim

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My work is my writing; I write blogs, and articles about autism and disability in general, and, as yet unpublished, short stories and novels.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?

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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

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Autism, Illness and Meltdowns:

The signs are all there – so why can`t I recognise them?

I normally have an outburst before I get ill.  It doesn’t mean I get ill every time I have an outburst, but it does mean that if ever I am coming down with something, in the days before it fully becomes apparent that I am ill, I will have some kind of meltdown or outburst, or at the very least be snappy, and even more short tempered.

I find it hard to recognise when I am feeling ill.  And so where a lot of people would say that they are not feeling too great and perhaps adjust what they were doing to suit that, I just carry on as normal and my negative feelings come out in other ways.  It might seem strange; how can you not know if you are feeling ill?  But what you have to understand is that with autism comes stress and anxiety, and with stress and anxiety come physical traits that can be similar to being ill: stomach pains, headaches, and tightness of the chest, nausea and dizziness.  These are all common, sometimes daily, occurrences for me and other people who have high anxiety levels.  So how am I supposed to know when they grow worse that this is actually down to me becoming ill?  I also, as I have discussed before, have a high pain threshold.  This has a lot of bonuses of course, but also means that things like infections can take hold and become serious before I even notice I`ve got them.  It is not uncommon for me to be ill for several days before I actually realise it.  And in those days I tend to have an outburst (meltdown) This happened again recently.  I had an outburst and was short tempered for the next couple of days, and then I became ill.  The same old pattern.

But it raises questions.  The biggest and most obvious of which is `if it is the same old pattern and it has been going on for years, why can`t I spot it?  The honest answer is I don`t know.  I think it is a combination of things.  As I`ve said before, symptoms get lost.  I don`t feel pain the same way other people do.  But also I think I get so caught up in the short term impact; if I am feeling ill then things such as noise, or other sensory stuff will affect me much more than they normally do.  So I need to deal with this.  In the moment I can`t stop and think `why can I not handle so much talking? ` I just need whoever is talking to shut up so that is what I tell them to do.  My Mum tends to react to that, but I still need her not to talk so I tell her again, and things escalate from there generally.  We can both see this perfectly when we look back at it, but in the moment neither of us seems to be aware.  It is something that we both need to work on.  But I am sure you can see how difficult it is trying to spot illness in somebody or even in yourself, by how they/you speak or react to things – days before any symptom of the actual illness become apparent.

Have any of you ever experienced anything like this?  And if not how does illness impact on you, if you are autistic?

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

And here`s the link to our new E Book Autism & Animals – the benefits of animals for autistic people https://www.amazon.co.uk/dp/B01GO1N1X6

Managing Sensory Overload …

I have spoken before on my blog about rest days, and about how sometimes they have to be taken even when I would much rather be productive.  But often I will only have rest days when I reach a point where they are absolutely necessary, after I have become overloaded.  Even though this might help to reverse the overload it means that I don’t have a great deal of control over when I rest, and when I am productive.  So what I have been trying this week is resting the day before I know I have something to do, such as going out, in order to ensure I have enough energy to complete the activities.  Even though I like to plan I have never been very good at planning in a way to ensure I was resting, and would have enough energy to do everything I want to do over the course of a week.  I might push myself too far on a Friday, even when I began to feel tired, and therefore not have enough energy to go out on a Saturday.

This week I had planned to go out on Thursday to visit family.  I knew that to get there I would need to use public transport, and it might be a relatively busy and noisy environment when I did arrive.  To ensure that I had the energy to go and accomplish this I had Wednesday as a rest day.  As strange as it sounds it was difficult to rest as I felt I should be doing something more productive and useful.  And yet the next day I could feel the benefits.  I felt much more able to go out and do what I needed to do than I would have done if I`d pushed myself on the Wednesday.

I needed to walk to a tram stop, travel on public transport and be in a really busy, noisy environment; interacting with people socially for an hour and a half before getting the tram, then walking back home.  And while I did feel overloaded after this I know that if I had woken up on Thursday feeling overloaded there is no way I would have been able to get up and go out, or even attempt doing this journey.

So even though it was difficult having a rest day on the Wednesday I feel that it was worth it.  When you enjoy working, then it can be hard taking the time out that you need to rest, especially if it is rest as a preventative measure.

But one thing that I am learning and understanding more and more as I grow older is my limits, and what I need to do to ensure that I stay within those.  The reality is I can’t push myself to the point of overload every day, and not suffer badly from it.  When I had to get up each day and go out to college or university, traveling on public transport and interacting with people for hours, I barely had the energy to do anything else.  Even activities such as reading and watching films felt hard for me.  And I need to remind myself at times that this isn’t because I am lazy.  It is because I am autistic, and when I become overloaded it means that I have pushed myself too far.  I am productive; I have a book coming out later this year, and I have edited and helped my Mum to publish her book earlier this month https://www.amazon.co.uk/dp/B01GO1N1X6

But there will be days when I simply sit around and do nothing.  There might be more of these than there are for most people, and as strange as it might sound I think that is one of the hardest things about being autistic for me.  I can`t work twelve hours a day, five days a week.  My mind literally starts to shut down, and I do mean literally.  It is as if a great fog closes in over my brain once I become overloaded.  I find it hard to form coherent thoughts.  I speak much less, my memory is severely affected, and I find it hard to hold a thought in my head for too long, or remember things.   Physically my body begins to feel stiffer; it aches, and I feel as if I have just done an incredibly difficult workout.  Basically when I am overloaded I am the last person you would want doing any kind of job for you.  It seems bizarre, but taking time off enables me to be more productive, and to do better work.  But if anything, I am the one who needs the most convincing of this …..

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

And here`s the link to our new E Book Autism & Animals – the benefits of animals for autistic people https://www.amazon.co.uk/dp/B01GO1N1X6

 

Autism & Animals Book – and why writing such a positive book has been so hard for me …

Today, June 16th ASK-PERGERS? new book, Autism & Animals – the benefits of animals for autistic people, will be published as an E Book.  We are looking forward to the book being published and hoping that lots of people read it, and enjoy it.  The book takes a positive look at the relationships that often form between autistic people and animals, and the benefits this can have on things such as confidence and self-esteem, understanding and expressing emotions, and on our general sense of well-being.

The process has been quite stressful, partly because although we have two books published already, and Paddy-Joe has a book coming out very soon of his own, all of these have been published through a professional publisher, and so the Autism and Animals book is our first attempt at self-publishing, and it wasn`t as straight-forward as we`d hoped!  In fact we have really struggled to get printed copies, and have settled for the electronic version for now to prevent further delay in publishing.

However, these difficulties are not what has made the writing and publishing of this positive book so hard, and so stressful for me.  I don`t want to go in to too much detail, but the past year or so has been the absolute worse time of my life.  Both Paddy-Joe and I have been through some really horrendous experiences – the death of one family member who we loved more than it is possible to say, the near death of a close and equally loved family member, who remains on palliative care.  An investigation in to the death (I can`t say any more about that) and another family issue that has been extremely stressful to the point of making my son and myself very ill.  All of the above has meant time away from my autistic son for me, and a complete disruption to his routine.  This, along with anxiety and grief have caused him to have increasingly explosive meltdowns on most days.  I really can`t describe how scary they have been for both of us, leaving us with chest pains, dizziness, and an extremely low mood.   There has been more, so much more, too much to write here, and too personal for social media.  We are both exhausted, and completely burned out.  For over a year now I have felt unable to work on ASK-PERGERS? and have left most of the work up to Paddy-Joe.  I am trying to rectify this, but still most days my depression is such that I am unable to interact, even on social media.   My son isn`t feeling much better, but he has done his best to continue with our autism information and advice service through Facebook and Twitter.

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So why did we press-on with completing the Autism & Animals book (which I came so close to scrapping so many times)?  It is partly because we didn’t want to let anyone down.  Lots of individuals and families contributed their stories and experiences to the book.  We had already started writing the book before our lives were turned upside down, and we had to keep postponing completion of the book, and then postpone publishing due to our personal circumstances, and the way we were feeling.  However, my son encouraged me to continue with the book, and we worked together on it as often as possible.  With weeks on end spent at the hospital, often awake all night and all the following day, no proper food or rest it was extremely difficult.  And when I was at home with my son he was so agitated by everything that has happened and so overwhelmed that the meltdowns were (are!) coming thick and fast, and each one completely wiped us out.  However, my son kept reminding me that we had made a commitment to the people who had contributed to the book, and they were all so kind and patient, that we pushed on, and finally the book was ready to be published! We also wanted to publish while our dogs – Fred and Poppy, the inspirations behind the book – are still with us as they are quite old now, and have a few health problems.

Our lives remain extremely difficult at the moment, although not as chaotic and distressing as they have been over the past year and a half.  We are trying to get back to some sort of normality, but this is hard as many of the issues are still on-going.

I am so glad we didn`t give up, and now have a lovely book to share with you all J

The book is dedicated to my parents, and published on June 16th as it would have been their 63rd wedding anniversary, if they were both still here to celebrate.

The book is a testament to the loyalty, intuition and strength of animals.  And shows just how beneficial they can be for some autistic people.

And here`s the link for anyone who may be interested J

The book is called Autism & Animals – the benefits of animals for autistic people – and is priced at £4.99.  And I can`t believe it is finished at last!!

https://www.amazon.co.uk/dp/B01GO1N1X6

Jane Donlan x

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 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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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

Autism and the Puzzle Piece ………..

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The puzzle piece has become synonymous with autism, and with autism awareness over the years.  A lot of people use it, but most likely many of them don’t think about what it means.  I have been thinking about what it means, and what it represents recently, and I have to say that after giving it a lot of thought and consideration, and weighing up many arguments for and against, I am not a fan.  I am not suggesting it is immediately deeply offensive in the way perhaps racist language would be, and I am certainly not saying that people who use it mean to be offensive, or even mean anything negative about autism.  There are many reasons why I dislike it as a symbol, and in this blog I will attempt to explain what they are. This isn’t meant to be calling anybody out, and people should not feel like it is criticising them if they have used the puzzle piece.  It is simply my view, as somebody with autism, which I am putting forward to make people think.

In 1963 the NAS needed a symbol to represent autism because it had only been officially recognised about twenty years earlier, and it wasn’t really known about at all.  They wanted to be certain their symbol wouldn’t be mistaken for anything else.  There are a lot of charities out there, and finding a symbol that catches the public’s imagination, but isn’t too similar to anything else is difficult.  In the end they settled on a puzzle piece, with the image of a crying child in the centre, created by a parent member Gerald Gasson, This has to be seen in the context of the times, when the majority of people with conditions such as autism may have been institutionalised, and there wasn’t a great deal of care, support or understanding for autistic people.  The charity Scope was still known as the Spastic Society, and terms such as Moron, Imbecile and Idiot were still recognised medical diagnoses.  Virtually all the coverage of disability, learning disability, or any difference would have been negative.  So as a collection of parents who had set up what was probably the first autism-specific organisation in the world, they weren’t exactly in the best position to make sure everything was politically correct, and anyway political correctness as we see it today didn’t exist in the sixties.  When talking about why they opted for the puzzle piece and crying child, in the late nineteen eighties, one of the founding members said:

“The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.”

This type of language may have been acceptable in those days, but nowadays the concept of somebody being `handicapped` or `suffering` from autism is outdated –  that part was symbolised by the crying child, so the concept of autistic people not quite fitting in to society was therefore represented by the puzzle piece.  But there are actually still a number of problems with this idea which I will highlight below. The first and most important thing to say is that as with any point I raise in my blogs, it is not just me saying it.  I did plenty of research in to what other autistic people and their families think of the puzzle piece, and these are some of the main concerns that were raised

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  • The first point that many autistic people raise is the way this symbol assumes that we are puzzles, to be decoded in some way, rather than just people.  It is impossible to ever truly understand another person, so in a way we are all puzzles.  It has been said many times that if people would just listen to what autistic people have to say, or read what they write, then understanding autism and the autistic brain would be much easier.  It seems as if you might as well use a puzzle piece to represent people from Japan because you don’t understand Japanese culture, whereas if you simply take some time to talk to, and listen to Japanese people, things will become clear.
  • Another point – this one actually raised by people who are neuro-typical – is that the concept of decoding the puzzle of autism really seems to be more representative of neuro-typical professionals than it is autistic people.  Autistic people simply live their lives – they are not trying to put a puzzle together.  It might seem like a strange distinction, but I actually think it is an important point.  It does feel more like a symbol that would be worn by people who do research in to autism rather than people who actually live with it.
  • Although the puzzle piece is often used either without thinking, or with good intentions, people often misunderstand it, and its meanings.  Part of this may be to do with not understanding its history, and part of it may be because they assume it represents one thing, without actually thinking about it any more deeply.  This may be why so many parents, and even autistic people use the symbol.  And really it does complicate the issue because although in its origins, and with what it represents today, it is a negative symbol, it is used in a positive way by so many people.

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This sometimes makes it difficult to keep in mind what is wrong about it.   The real issue is that it is not obvious at first glance what it`s supposed to represent; people who defend it say that the pieces represent the families and friends of people with autism, the colours can represent diversity, and overall it represents the mechanical and logical workings of an autistic persons mind.  Now personally – and I know I am not alone in this – I don’t think any of this is obvious at first glance.  In a way it kind of makes sense, but it doesn’t really because none of those things actually call for a puzzle piece.  But if you think about it for a while you can kind of make it make sense.  The problems with this is you shouldn’t have to think about it – it should be instantly understandable at first glance.  The fact that it leaves so much room for interpretation is no doubt part of the problem. *

  • The puzzle piece is a fairly child-like symbol, using primary colours and big jigsaw shapes   A lot of autistic people may like bright colours, and appreciate the symbol on this level, but in a way, because it is so simplistic it does give the impression of being aimed at children – which could be seen to be reinforcing the negative stereo-type that only children are affected by autism. And it was actually designed to represent children because at the time the National Autistic Society was called The Society for Autistic Children (until 1982)

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  • The concept that there is a piece missing from people with autism which separates them from the rest of society is incredibly problematic.  It could easily be seen to be implying that there is a template for how people should be – a template of normality that people should strive to reach – and that because autistic people don’t measure up to this template, they are not full, complete human beings.  The truth is that people are different in all kinds of ways.  Autistic people don’t have something missing from them; they might feel things differently or think differently, but this is just who they are, and is not because a piece of them is missing.  And in a way the symbol does give the impression that if this piece can be found, and slotted in to place, autistic people will finally be whole.

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It is also worth noting that although Autism Speaks didn’t create the original puzzle piece, they seem to be the organisation most associated with it nowadays.  The bulk of their time, money and resources are spent on puzzling out autism; trying to find cures, and researching the causes of autism.  I personally don’t support them, but if you do that`s your choice.  I think that for a while the puzzle piece might have changed to represent a more positive image of autism, but now I believe that because of how much this organisation have been using it, and how it has become synonymous with their campaign to cure autism, it has gone back to its original meaning – mainly that autistic people are somehow lacking.  The debate over Autism Speaks is something for another blog, and I know it seems unfair to let them have the monopoly on an image such as the puzzle piece. But I do find it strange when people I know who speak out against Autism Speaks are happy to use the symbol that this same organisation plasters all over everything it ever puts out.

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Now it would be easy to sit here and say stop using the puzzle piece – I don’t like it, and nor do many other autistic people – but that perhaps would be a little unrealistic.  It has become so ingrained within autism awareness, and campaigns for acceptance that it would be difficult for people to stop using it overnight.  In fact there is an entire industry that appears to have grown up around it: clothes, jewellery, tattoos, to name a few, all featuring the puzzle piece.  Yes, if most autistic people are opposed to the puzzle piece then it should be retired, but I wouldn’t expect this to happen overnight – it may ultimately take years. The National Autistic Society dropped the puzzle piece in 2002, probably because they realised people in the autistic community were not fans of it, for all the reasons stated above.  And maybe in time other organisations will drop it as well?  I suppose the question that I am asking is this – if the NAS created the puzzle piece and used it for so many years, but have now ultimately decided that it is not a symbol they want to continue with, why have other organisations picked it up and ran with it?  If they took the NAS lead in using the symbol in the first place perhaps they should also take their lead in moving forward, and finding a new, more positive symbol?

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But perhaps the most important thing you can do when reading this blog is just to think.  If you have not already been doing so then take a moment now to think about the puzzle piece.  How many times have you seen it in literature, on the internet, in videos, on TV and in books?  Think for a second about what it actually means to you.  Not definitions given to you by somebody else, but when you see this image, what do you think?  Some autistic people have said that they like to be described as a puzzle as they find it appropriate for them, but I was actually surprised by the amount of neuro-typical people who when they stopped for a second, and actually thought about how they would feel as grown men and women being described as a puzzle, an enigma, or something to actually be put back together, realised that they would hate it.

This blog isn’t intended to make anybody who has been using the puzzle piece image feel guilty by the way – it`s not a big deal – just have a think about whether you want to continue using it, or whether you want to use something different?  I read a comment on an old Facebook page a while ago that I think perhaps could be useful.  The person in question was saying that when they first saw the puzzle piece it made them think that autistic people were a piece of society that had been ignored for a long time, and that it was society that was incomplete because of its refusal to accept different groups of people, so that instead of being a puzzle themselves, autistic people were just parts of a larger puzzle – that being humanity in general.  If  the puzzle piece isn`t to be retired completely,  may be it is worth thinking about this, and deciding exactly what it is you are trying to say or represent when you do use  the puzzle piece as a symbol of autism – what is your message, and if that message were aimed at you, how would you feel?

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Paddy-Joe Moran J

University:

The last few months have been very difficult, but now everything is finally sorted out for university.  After months of phone calls, meetings, assessments and providing evidence I finally have a grant, along with all the support that I will need in my course.  Although I haven’t started the proper course yet, and have only been doing introductory parts of it, it is still evident that the things we fought for will come in very useful throughout the three years that I will be at the university.  I don’t have a huge amount to say in this blog, the main point that I wanted to make is that there is no real way to make this simple – it can be very difficult getting the help and support needed for university.  But I also firmly believe that it is well worth it.  Some universities are very good and services will go through without any hitches, so don’t automatically think that you will have a very hard time getting what you need before you can attend university.  I have already talked in my blogs about how difficult it has been, so there is no need to go in to too much detail here.  The main thing to remember though, if the process is difficult, is that it is worth sticking to it.  For us it seemed that at every turn something new was coming up, that threw-up a whole wave of other problems.  But at no point did I ever feel that I wouldn’t get to university, or that it would be worth quitting, and not going.  In fact I felt the opposite; that because it was so difficult to get there it would be worth perusing even more.  Nothing should be off limits to people who have disabilities, and unfortunately I do know of people who have quit half way through the process, and dropped out of university because of how difficult it was to obtain the support they needed.  I would never have a go at them, or say they had done the wrong thing because everybody obviously have the right to choose what they do in their own life. But it is a pity that they felt they were denied the opportunity to a further education because their disabilities were not catered for.

Obviously I have no idea how I will find the next three years at university – it might be good or it might be bad, to put it simply. But the simple fact that I was able to go, and to get all the help and support that I need, which for a long time it looked as if I would not, feels like an achievement in itself.  I know this blog is very short, but now I am adjusting to university I hope to get back in to the routine of putting one up every week or two.  If there are any particular issue you would like me to talk about please let me know below in the comments or on Twitter or Facebook.

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

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The Autism Show Manchester 2014

This was our second year attending the Autism Show; an event that is held in both Manchester and London. Like most shows there are a variety of speakers: some people with autism, some professionals, and some parents. There are lots of different stalls ranging from people selling their books to people advertising care for adults with autism. We only attended on the last half of Saturday – partly because the two main speakers we wanted to see were on at that time, and partly because neither I nor my Mum felt able to go for the full day. This seemed to be a fairly common theme among several people we spoke to at the show.

We met up with both the speakers who we had planned to go and see – Phil Evans and John Williams, who we`d been in touch with on Twitter? Unfortunately, due to a scheduling rearrangement, we missed most of John Williams talk. But we found them both to be very friendly and welcoming, as were several of the stall owners who allowed us to leave our ASK-PERGERS? leaflets and business cards with them.

There were negatives though; as soon as we went in I could see that some people were starting to have sensory overloads. Even though I myself felt ok, I could see that the atmosphere was clearly too much for some. Now obviously conventions and shows are going to be busy and noisy, and there’s not really a great deal anyone can do about that, but there are a couple of things that I feel could have been done slightly differently: one thing – which may seem like a slightly odd detail to pick up on – would be the bright pink carpet. Again, this didn’t bother me particularly, but I spoke to a few people who were finding it difficult to deal with. It might seem odd, but I think having such a bright colour, added with the noise from all the people, was just too stressful for a lot of the autistic people there. I thought that the main speaking areas were much better than the ones last year as there was more of a gap between them and the crowds, so you could actually hear what people were saying. But the smaller speaking areas which were located in the middle of all the stalls, despite being better than last year, were still not quite right. The speakers would speak in to a microphone, and the audience members would put headphones on. Now this meant that you could actually hear the speaker’s voice, but what it didn’t do was drown out the background noise. So the noise was still a distraction when the speakers were trying to talk. I just think it would make more sense not to have the talks in the middle of the crowds and the stalls, or to construct some sort of framework around them so that the noise is vastly reduced, and also there would not be as many visual distractions for autistic audience members or speakers. Having said that the talk that we did attend by an individual with autism, Phil Evans, was very good despite the strange location. He spoke about autism and employment in a very positive way.

Overall I would say that the show is a good concept, and is reasonably well executed. I don’t think it is the most autism friendly environment in the world, but I think considering it is such a big event with so many people, it does a fairly good job of making it as easy as possible for autistic people to get by. One thing that they had this year, that wasn’t there last time, was a café outside in the lobby area. This was much quieter than the café inside the convention centre itself. They also had a quiet room where the speakers could go and wait, so that they didn’t have to spend any more time in the main hall than was necessary if they were finding it too much. I think that any big event like this is going to have problems, and sometimes, with annual events it can be a hit and miss process over a number of years, with gradual improvement each year, until something becomes as right as possible. It would be useful if there was a quieter place for people with autism to retreat to. There were sensory rooms in the convention centre, but these were for demonstration purposes not relaxation. I think it would be good if there was a room, maybe down a quiet corridor, that people with autism could retreat to. I didn’t explore down the corridors so I can’t say if there was or not, but I didn’t hear any mention of one, or see any signs.

There is still room for improvement, but hopefully next year it will be even better.

 

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The use of Language.

Nearly anyone could tell you how important language is; not just for practical communication. The words we use have the power to change and sway people`s perceptions of the world around them.  For example, it is a well-known fact that every politician who has ever existed has lied to the public at some point.  The ones who get away with it are either (a) so good at it that you don’t even realise you are being lied to, or (b) the ones who can phrase it in such a way that you don’t even mind that they are lying to you.  With the right choice and use of language you can manipulate people to feel virtually anything.  And that is why the words we use to describe other people are so important.  I have talked in the past about being annoyed when people find words like `disabled` offensive.  But I have also said that some words are created simply to de-humanise others, or to separate people from the rest of society.  The issue of words such as `disorder` or `condition` are very controversial, and I am not talking about these words.  What I am talking about is the choice of words lots of professionals and media people tend to use in reference to autism.  Most of this seems to come out of the U.S. but you do come across people from all counties using phrases like these.

The kind of words and phrases I am talking about are things like `epidemic` `sufferer` `disease`.  Now, none of these words are offensive on their own, or when used in their proper context; if you suffer from something, or have a disease, that`s fine, you wouldn’t get offended if somebody pointed it out to you.  But if you are autistic that simply means your brain lines-up differently to other people`s.  So to imply that I am diseased simply because I have a different way of thinking and feeling than you do, manages to make you sound both deeply, deeply stupid, and also very intolerant.  Also, the use of the word `epidemic` implies something that is spreading – autism isn`t `spreading` – more people are being diagnosed because we have a greater understanding of autism now; the same as every condition that has ever been discovered appears to become more prevalent once we have a better way of testing for it.  People will use phrases like `battling autism` and the `fight against autism` – all terms like this can do is breed anger and resentment – you are battling and fighting, but against what? Against the way your child`s brain works?  Where can all this anger and fighting actually get you to?   It seems as if the anger just goes round and round in one big spiral, achieving nothing.  It is not a war, you are not battling anything; autism is just the way people`s brains work.

A lot of the language around autism does seem to be extremely confrontational and aggressive; as if it is some disease spreading around between our children that must be fought off at all cost.  Of course there are negative aspects to autism – you`d be a fool to say that there aren’t.  And maybe in certain situations you might struggle to find the positives, but the majority of people can see both positive and negative things in their autism.  Autism is far from a disease; in reality it is a way of thinking, and a way of feeling, and a way of seeing the world.  It comes with its own set of challenges, and some of the positives might not always be so easy to see.  And even though autism doesn’t always define autistic people, it is a massive part of who we are.  A lot of people seem to believe that the child, and the` autistic part` of the child, are completely different, and they go on about wanting a cure, without seeming to realise that their child wouldn’t be the same person if they changed from being autistic to non-autistic.  And it is the same thing when you use language like `diseased` or `epidemic` or talk about `waging a war`.  You are not using these terms about some separate, invasive element – you are talking directly about a group of people.  And even though I believe in listening to everybody`s opinion, I think you need to have at least a basic grounding in a subject before you talk on it.  So I think if you use words like that – words that prove your ignorance – the best thing you can do is stop talking, go and read a few books, and come back when you are qualified to join in the conversation.

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