Tag Archives: acceptnce

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?

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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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Awareness versus Acceptance ( re-post)

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

Awareness versus Acceptance

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

Awareness

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

Acceptance

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

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

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

ASK-PERGERS?

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

Twitter https://twitter.com/ASKPERGERS

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

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

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

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

Paddy-Joe Moran

Inclusion in Mainstream Schools Vs Special Needs Schools

 

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

Should children with disabilities attend Special Needs Schools?

Pros:

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

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

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

Cons:

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

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

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

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

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

Pros:

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

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

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

Cons:

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

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

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

Conclusion :

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

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

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

ASK-PERGERS?

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

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

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

Paddy-Joe Moran

 

[jm1]

Autism and the Puzzle Piece ………..

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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?

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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.

*

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

978-1-84905-275-7

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?

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 doesn’t 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 awareof autism to some degree – even if it is just through Rainman. Some people are acceptingof 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?

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