Tag Archives: help

Autism, and how routine is helping my low mood.

Lately I have been finding it hard to get things done. I have had low energy and a low mood, but it’s been hard to pinpoint just what the cause of this might be. I have tried my best to get on with things, but a lot of days I just end up falling asleep in the afternoon, and not even being able to decide which film to watch. Even the things I enjoy doing like watching films and reading have suffered. I was finding myself unsure of what to do most days, even though I had a lot of stuff I could do, or wanted to do I could not decide what I should be doing, and that made everything feel much more overwhelming than it really was. This meant that whole days were going by where I did almost nothing, and the things I needed/wanted to do just built up and up.

After talking to my Mum about this she offered to help me come up with a new routine to try and put some more structure in to my day. I did used to have a routine, but due to various family issues it has become disrupted.

We started the routine on Thursday night and I found it worked. On Thursday and Friday I was much more productive, and also found time to get the things I enjoy done. Knowing what I was doing, when, and for how long helped me. Having it written down and being able to tick off each thing as I did it was also a help as it allowed me to see what I had coming up next, and become used to the routine more quickly.

I am sure that I don’t need to go in to how important routine can be for autistic people as that has been talked about so much. As a child I worked on routines all the time. I can recall how hard it was when there was even a slight change to one. But I have to admit it did surprise me how much I still need a strict routine in my life.

Even as an adult if I don’t plan out what I am going to do I get nothing done. Let me give you an example that will show just how important a routine can be, and what a difference it can make.

On the first day of my new routine I was up at six, I did a work-out, showered, sat down and worked till lunch time. After lunch I watched a film, did some more work, and then spent the evening reading. It might not sound like a lot, but I had spent weeks worrying about how to fit all those things in to one day, but not actually doing any of them – that is despite the fact I am at home all day. But just knowing when I was going to do each thing and having it planned out for me meant I got it all done with ease. Not only did I get stuff done, but I ended the day feeling less tired and feeling better about myself.

Then let’s look at the weekend. The one fault with our new plan is that it does not cover the weekend. So I know what you might be thinking – why could you not just get up and do it anyway? Well I don’t know. But I found Saturday just drifting away. The truth is I am not even sure what I did – and I don’t mean that in a relaxed sense. I did not read, did not watch anything or do anything that I can think of. The day just seemed to pass, and then be over. Sunday was a bit better, but by that time it had become clear to both me and my Mum that just having the weekend as free time was not going to cut it. We needed to make at least a basic plan.

Because that’s the thing a lot of people don’t get about autism and planning; I don’t just need to plan when and how I work, I need to plan when and how I relax too. I can have all the free time in the world, but unless I have some structure and a plan nothing, or next to nothing, will get done. When I say I did nothing on Saturday I mean it; I did not have fun, or relax, I just drifted round unsure of what to do. The less structure there is the worse I feel, and the more worn-out I get. But just by putting a good routine in place and sticking to it all that can change. This morning I stuck to my weekly routine: I got up, worked out, went to the field with the dogs and wrote this blog by 09:17 in the morning.

The past few days have been a reminder to me how key routine is, and how despite not being a child any more having a good routine and structure to my day is just as important, and useful now as it ever was.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

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

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

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Autism 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

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

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

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

Paddy-Joe Moran J

Accommodating each other’s autism.

Accommodating someone’s autism can be difficult when you are sharing a house with them.  But if there is more than one autistic person in a house it can be even more difficult for them to accommodate each other’s autism, for example you could have one person who absolutely hates the smell of a certain food, and another person who will only eat that particular food.  Each person can have a routine that they feel they have to stick to, and these two routines could contradict each other.  Even though the two autistic people may have a good understanding of autism it doesn’t mean it will be any easier for them to accommodate the other person’s autism.  But because autism does tend to run in families situations, where two or more people with autism are sharing a house are quite common.

 The main problem can arise from the fact that while autistic people might be willing to compromise with some things, there will be other things that they simply cannot give in on.  If one sibling has an extreme sensitivity to sound and the other one constantly yells and screams, it is obvious that there is going to be conflict.  Of course in this situation they both need to work at finding some kind of compromise, and they may need help from the parents with this.  It is not fair for the one sibling to run around screaming and shouting – whatever their reasons for doing it are – but on the other hand the sibling with sound sensitivity will learn that their brother or sister will have to scream and shout sometimes, and they will need to try to find ways of coping with that.

.  A lot of people would think that neuro-typicals adjusting their behaviour to accommodate someone with autism is the most difficult thing, but this simply isn’t true.  It is not to say that two autistic people living in a house together can’t have a good relationship – in fact a lot of autistic people end up getting married to someone who also has autism, but this is different from having two people with autism being required to spend a large amount of time in the same house as each other, such as siblings, or parent and child.  There is no reason that two or more people with autism shouldn’t live together, and get on perfectly well for the majority of the time, but it would seem highly improbable that they could do so without having any kind of conflict.  The most important thing for people to do in this situation is to try to think how they would want the other person to treat them – if you want other people to adjust their behaviours to make life easier for you, you have to adjust yours a little bit as well.  If someone is unable to do this or they simply don’t have the understanding of what they need to do, then spending time apart could be very important. This gives everybody a chance to be on their own and to relax, to do what they want, and behave however they need to without having to worry about taking somebody else’s autism in to account.

Something else you could try – and again only if you are able to – is to talk to each other about how you experience autism; what it means for both of you, your similarities and differences.  Try to explain what you need from the other person. If the people with autism struggle to do this then parents, or siblings can help obviously.  There are lots of couples who are both autistic who have very happy relationships, and also some who have children who are autistic as well.  These aren’t relationships devoid of conflict – no relationships are; be it between neuro-typicals, autistics, or neuro-typicals and autistics – but they are relationships where people have a good understanding of each other’s needs, and do their best to accommodate them – that`s the basis for any relationship – be it with a family member, a partner or your children.

As with so many other things in life, autism just takes something that is perfectly normal and makes itthat bit more complicated – complicated, but most definitely not impossible.

 

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

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

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

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

Help with autism for University.

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

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

If you need any more help or advice about Asperger`s, or simply want to talk about it check out our free help and advice service ASK-PERGERS? On Twitter https://twitter.com/ASKPERGERS Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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