Tag Archives: asperges

Awareness versus Acceptance ( re-post)

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

Awareness versus Acceptance

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

Awareness

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

Acceptance

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

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

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

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

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

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

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

Paddy-Joe Moran

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Autism and the Puzzle Piece ………..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ASK-PERGERS?

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

Twitter https://twitter.com/ASKPERGERS

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

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

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

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

Paddy-Joe Moran J

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

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

Why is the problem of loneliness prevalent in autistic people?

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

Why does this sometimes go un-noticed?

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

What has this got to do with Christmas?

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

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

What can people do to help?

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

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

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

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

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

HALLOWEEN

HALLOWEEN

Halloween is one day, but the impact on people with autism can start days before the event, with all the activity and preparation for Trick or Treating, or Halloween parties. Or even weeks before, with the aisles in shops filled with bright orange pumpkins, scary masks, and bright-red fake-blood. This can have a sensory impact on somebody with autism. The impact of Halloween can last for days, or even weeks.  If you decorate your house with black and orange streamers, Jack-o-lanterns, candles, fake spiders, rats, and bats, then it may be a nice change, a fun change for your child with autism, but it is still a change.  And those of us in the autism community know that even good change can be overwhelming for somebody who has autism.

There can also be a lot of excitement around this time of year; siblings or friends of the child with autism may be looking forward to playing Trick or Treat, or going to a Halloween party, or even just to dressing up, and having some fun at home.  People with autism can be very sensitive to changes in the moods of others – they may not always be able to recognise or articulate others feelings, or their own – but they can still be affected by the heightened mood of others.

Bright colours, changes in food such as extra sweets, and different smells in the air, can all contribute to a sensory overload which can leave the autistic person feeling overwhelmed and stressed.  Costumes with itchy materials, or labels, face-masks, wigs, face-paints – all of these things can feel irritating and uncomfortable for someone with autism, even if they want to dress-up and take part.  On the whole, although Halloween can be a fun and exciting time of year for all children, for children with autism it can also be a confusing, distressing, and overwhelming occasion.

Below are some tips that may help you and your child with autism to get the best out of Halloween, and hopefully to enjoy it J

  • First and foremost – your child does not have to take part in Halloween activities if they don’t want to.  You can plan something quiet to do with them that isn’t related to Halloween.
  • Preparation is usually the key to success in most areas when it comes to autism; start preparing your child for Halloween a couple of weeks before the event actually takes place to give them time to get used to the idea of a change.  One way you can do this is to have a calendar, and count down the days to Halloween with your child.
  • Depending on your child`s age, it can be really helpful for them to learn lots of facts about Halloween such as where it originated from, and why it is still `celebrated` today.  They may enjoy doing the research with you.
  • For all children with autism, despite where they sit on the spectrum, writing and drawing about a subject can help them to absorb it better.  They can write poems about Halloween, draw pictures, make collages – anything that is fun and helps to get the information across regarding what Halloween is, and that it is going to be happening soon.
  • Even if you don`t `do` Halloween in your family, the likelihood is that your child will still be affected because of the merchandise in shops, the buzz of their friends who do take part in Halloween, and especially because of Trick or Treat, and how chaotic and noisy the streets can be on that night.  Your child will still benefit from some preparation.
  • If your child is going to wear a costume try to have this sorted out well in advance of Halloween.  Let them get used to wearing it; to the feel of the material for example, and then if there is a problem you will have time to fix it, or find a different costume.  Irritating material, and itchy labels can be particular problems.
  • Don’t try to cajole your child in to wearing a mask or fake fangs if they are reluctant – these could prove to be extremely uncomfortable for someone with autism.  The same goes for wigs, and face-paints.  One useful tip is to try to make a costume from clothes that the child is used to wearing; for example take old leggings and T-shirt and tear them to make a zombie costume, rather than buying a ready-made one, and risking the material itching the skin. An alternative to wearing a mask can be to make one on a stick that they can hold in front of their face as and when they want to.
  • If your child want to do Trick or Treat then prepare them for this by talking, writing, drawing in advance what they can expect.  They may want to wait at the gate with you while siblings/friends go to the door, or they may want to go to every-other door, to have a little break in-between. It can be useful to put a time limit on how long the child will be Trick or Treating for, and maybe have something calm, and quiet planned for the return home.
  • If your child is on a wheat and gluten free diet then you may need to make up some treats especially for them, or enough for the whole family so they are not eating differently from everybody else.  When it comes to Trick or Treat, maybe you could speak to close neighbours, family or friends in advance, and give them some wheat and gluten free treats to give to your child when they knock.
  • If your child is staying home, and needs to be shielded from the noise of Trick or Treat you could use ear phones, and put a favourite story CD on for them, or get them engaged in an activity they normally enjoy before all the noise starts, so they are already engrossed in something, and hopefully won`t be as affected by the noise.
  • To prevent too many people knocking on your door, place a bowl of sweets just outside your door, or near the gate, with a note saying `…Unable to answer the door tonight, but please feel free to take a handful of sweets…`
  • As the noise and excitement wears off your child may need some space to themselves, and some quiet time, so don’t make any demands on them, such as sitting with the family, or doing homework.
  • Try as far as possible to stick to your child`s normal routine.
  • Remember that they may experience a sugar-rush from too many sweets and this could affect their behaviour, making them more hyper-active initially, then possibly tired and irritable as they `come-down` from this.
  • Don’t pressure the child to try new foods on Halloween, such as scary shop-bought cakes.  Make sure their usual food is available for them.

Stress, anxiety, and sensory overload can last for days, or even weeks after such a big change in routine as Halloween.  Don’t be surprised if your child does have a meltdown in the days, or weeks following Halloween.  And remember; when they get upset, or explode because of something seemingly small, that this may actually just be the trigger that has released a build-up of emotions during the Halloween period.

If you do put in to practise some of the above tips you may not reduce sensory issues, or the risk of anxiety or meltdowns completely, but they should help to lessen these difficulties, hopefully making things easier for your child with autism, and for the family as a whole.

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When my son was younger I was able to find lots of advice and information regarding the bigger changes and transitions, such as going from primary to senior school, or from senior school to college.  I was completely unable to find any advice on the smaller, daily, weekly, monthly or yearly changes, and so I set about creating my own.  The Transition Techniques I developed were specifically designed for times such as Halloween, Christmas, weekend to weekdays, changing of the seasons, and a whole host of other smaller changes – that don’t seem so small to people with autism!

To learn more about our Transition Techniques for these smaller, everyday changes take a look at our Transition Techniques book: http://jkp.com/catalogue/book/9781849052757

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The KINDLE edition can be found here: http://www.amazon.co.uk/Children-Spectrum-Conditions-Everyday-Transitions-ebook/dp/B00C4XR1PI/ref=sr_1_1?ie=UTF8&qid=1412715667&sr=8-1&keywords=helping+children+with+autism+spectrum+conditions+through+everyday+transitions+kindle

For information and advice on AUTISM/ASPERGER`S take a look at our on-line advice service ASK-PERGERS? on Twitter: https://twitter.com/ASKPERGERS  Facebook: https://www.facebook.com/ASKPERGERS

HAPPY HALLOWEEN FROM ASK-PERGERS?

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

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

The 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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Is Autism a Disability?

One thing that kept coming up when I wrote my blog about the idea of a cure for autism, was the fact that the word cure made it sound like autism was some kind of disease.  Also, I have noticed a lot of anger recently on Twitter about people on the T.V. using the term `autism sufferer`, which again implies some sort of illness.  Even the term disorder, as in autism spectrum disorder, has its fair share of critics, but what about the terms disability or disabled?  Are these the correct terms?  And ultimately does it even matter what term you use?

Organisations like the National Autistic Society refer to autism as a disability whereas the DSM refers to it as a disorder.  But the NHS says that on its own autism is not a disability, but that sometimes, depending on where you are on the spectrum, it may come along with other things that would mean the person was disabled.

 Lots of people make a big deal about not wanting to be referred to as disabled.  They may claim that because they are able to get on with their lives and do other things they can’t possibly have a disability, whereas I would say that autism is a disability.  In some cases it disables you from doing certain things, therefore it is a disability.  In my view, refusing to accept the words disability or disabled simply give the words more of a stigma.  It is basically like saying `if you can still do things and make something of your life you can’t possibly be disabled`.  Somebody like Stephen Hawking is quite obviously disabled; he can’t walk or even move, and is unable to speak now without the aid of a computer.  The fact that he has achieved things that very few other people in the world could achieve, doesn’t mean that he is not disabled – just as being disabled doesn’t mean you can’t achieve those things.  It is the same with people at the Paralympics; they were without question disabled – that’s the whole point of the event – if they are going to claim they are not disabled they may as well just pack up and go home.  Of course there is the whole other argument that people with disabilities should be able to compete in the Olympics, which I think would be fair enough, but that is a different debate. 

In my mind, when people refuse to accept that they are disabled, they give the word all kinds of negative connotations – just accept it and move on – it`s not like people are going to be calling you disabled every day for the rest of your life.  Ultimately words are meaningless, and the only reason they have any power at all is that we give them power with our reactions to them.  If you change the word disabled what do you replace it with?  Disorder is another word that sparks a lot of controversy for exactly the same reasons.  If you use the term differently-abled, you deserve a punch in the face – because it basically means the exact same thing, just in a more patronising tone.  Having said all this, if the word disabled really does distress you, you don’t have to use it yourself.  I can’t think of a time in my life when I have ever referred to myself as being disabled, or of a time when someone has ever directly referred to me as disabled  But I do consider autism to be a disability, and the knock on effect of that of course is that I would be considered disabled. 

I suppose what I really want to try to get through to people is that, yes, to a degree words are important – but they are only as important as you make them.  A hundred and fifty years ago the word nincompoop was considered to be one of the worst insults you could throw at somebody.  Language changes and evolves, and whatever new words come in and replace the old ones, eventually somebody will get offended by them and they will have to go.  It is similar to the debate over the word prostitute – apparently the term now is sex-worker; but that could mean anything; a porn star could be a sex worker.  Pimps or strippers work in the sex industry.  Words seem to go from harmless to offensive all the time nowadays – a lot of words that a hundred years or so ago would have been given as a medical diagnosis, such as idiot or imbecile, are now considered to be insults.  Now, I am not saying that those words should be acceptable, of course not, but it is simply the evolution of language. Some words were used in a clinical sense, then began to be used as slang – and then insults – until they were judged to be unacceptable for their original purpose, and new words needed to be found.  Much the same thing is happening in America with the word retard at the moment – it is a much more socially acceptable word over there than in the UK, and in some places will still be used in a medical sense, but because of its connotations as an insult, it is finally becoming much less acceptable to actually refer to somebody who is disabled as a retard.  I don’t think it`s a bad thing if Americans stop using that word in a clinical sense also.

 In reality it is just the way language evolves; around half of the most well-known swear words today were originally farming terms across England or Germany.  Language evolved, and at some point those words stopped being socially acceptable agricultural slang, and became insults – much the same way that insults from a hundred years ago or so, like brat, became socially acceptable slang.  Certain words are created as insults from the start; in history whenever one race has tried to exert superiority over another, language has always been one of the most powerful weapons – refer to a group of people with words that make them seem less than human and it is easier to do atrocious things to them.  So these words are always considered insults, and understandably so, but what about other words, such as disability?  Well as I say, it`s basically pointless to get offended by it.  I mean if somebody really wanted to insult you would they just say `you`re disabled`?  There are a whole plethora of other insults available, and it is a pretty substandard bully indeed who would fall back on `disabled` as an insult.  I just feel that there are far more important things to focus on than terminology when it comes to the word disabled where autism is concerned.  Autism, no matter how many positives it may bring to your life, will come with its fair share of difficulties – and it is really much better to focus on dealing with those difficulties, without bothering to think about the terminology behind it all. 

 

 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