Tag Archives: blogs

Making my first phone call.

A few days ago I made a phone call. I put in the number, waited for someone to pick up, told them who I was and what I wanted, answered their questions, was passed on to someone else,waited on hold, sorted the issue out, said goodbye and hung up the phone. I know what some of you will be thinking “So what? That’s a phone call. People make them all the time. I don’t see the big deal!”. But because of the nature of this blog I know there are some of you who will be thinking something more along the lines of “Oh God that sounds awful! I hate doing that/the idea of doing that!” Due to my autism I am firmly in the second camp, and that’s why I wanted to blog about making a phone call, because – as I only realised after it was all over with – it’s the first phone call of that kind I have ever made.

I have called my family on a couple of occasions, although I don’t even like doing that, or talking to someone on the phone when they call me. It’s hard for me to put my finger on quite why I find talking on the phone so hard (even harder than talking to someone face-to-face I mean) Perhaps it’s because it is so hard to tell when I should be talking as I have no visual clues; I can’t see who I am talking to – it’s just a voice with no face attached to it. Also, when you phone a call centre the background is often noisy, and while some people might not even notice this, if you’re autistic it’s hard to filter out that background noise. And there is the issue of anticipation; if you know you have to make a phone call the anxiety and nervousness can build all day. But you have to put an end to that; you have to be the one to pick up the phone and make the call. But you also have the power to put it off which means that you can fall in to a cycle of putting it off as it’s so stressful which means you wait longer, which means you grow more stressed. The stress and anxiety of knowing you have to make a phone call can be huge. Your chest can go tight and you can start to turn over and over in your head what you might say, and what the person on the other end of the line will say back to you. And sometimes this will help to calm you, but other times it will just get you more and more worked up to the point of panic. To then have to pick up the phone, make the call, and deal with whatever it is you are calling about can be a massive task.

What seems so small, and day-to-day to some people can be a skill that it takes a life time to master (or get to grips with but not quite master in most cases) for autistic people. I am twenty two now, and as I say I have only just got to the point of making a phone call for myself. However, just because I made one phone call does not mean that I would be able to make another, or even that I would feel confident enough to call the same people back about the same issue if it were to happen again. But even if I am able to call them again, and call other people up and talk to them, that would not mean there would be no impact. My Mum (who is also autistic) has been making phone calls all her life, and can talk on the phone for three or four hours when sorting out a computer related issue, still gets all the same worry and stress that I do from the idea of using the phone. She is able to do it yes, but it still leaves her feeling worn-out, and takes a toll on her.

So I am aware that there might never be a time when I am able to use the phone with ease and free from stress, I might always get a tight chest and a sense of panic at the idea of having to ring someone up and talk to them, and even as an old man I might still do all I can to avoid talking on the phone. But now that I have made a phone call from beginning to end I do feel a certain sense of accomplishment. I know that for most people this is no big thing, but up until a few days ago it was something I had never been able to do. And I am glad that to a degree I feel I have at least somewhat got the hang of a skill that has eluded me for years. As I say, I might not be able to use that skill again next week or in the foreseeable future, but the fact that I have been able to use it even once is good in itself.

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

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

Autism, and the confusion around receiving gifts …

Sometimes being given a gift can be awkward for anyone; they might be given something they don’t like and have to try and pretend that they do like it. But for people with autism even being given something they do like can be awkward: knowing how to react, what to say, how you should look, and things like that is not something that will come naturally to most autistic people. So why can receiving a gift feel awkward? And what can you do about this?

What do you do and say if someone gives you a gift? This might sound like an easy question to some of you – you just say thank you and then open it. But the fact that you are meant to say thank you is one of those unwritten rules that can be so hard for people with autism, and they might just not think so say thanks. This might be even more likely if the gift is not given on their birthday, but is a random gift. They are not in the mindset of being given something, and it will take them by surprise, and saying thank you just might not occur to them. That’s not because they are being rude, it`s just because saying thank you is not something that is automatic to them as it might be to someone who is not autistic. I know that when I was younger often I would not think to say thank you without being prompted, and once someone had pushed me to say it I would often feel embarrassed, and try and get out of saying it.

But even now that I do know to say thank you I still find it hard on Christmas morning to know if I should say thank you after each gift, or just once at the end. Should I say thank you after a big gift, but at the end if its just a few small things? Would it be odd to thank someone after each gift if you are sat next to them and opening the gifts one by one? Or is it rude to not say anything? Does it matter? I genuinely do not know.

I tend to say thank you at the end. I open anything I happen to get and then thank whoever gave it to me once everything is open. But even then I feel unsure. How long should I look at each thing for? I am going to spend a lot of time looking at them in detail later on, but is it OK to just turn something over in your hands once and put it to one side after someone has spent money on it? Even if you plan to look at it later on? Again I am not sure. I tend to do this, but I do not know if it’s the right thing to do or not.

Added to that for me – and I am sure for other autistic people – is the fact that it can be hard at times for people to read my face, and tell how happy or not I might be about whatever they have given to me, and even when I speak my voice may well be flat. I might look up with a blank face and say in a none-too-excited voice that I am very happy with what I have been given. It would be hard to blame someone if they though I was lying about that. Lots of autistic people say that they find it hard to put emotions in their face or voice – that’s not to say they will not be there from time to time, it`s just hard for us to force emotion to be visible.

There is also the fact that once someone has given you something you are no longer in the background; you become the centre of attention for a while as people watch to see how you will react. This in turn makes you think more about how you react, and makes you doubt and second-guess yourself more.

Like everything in life there is an unwritten etiquette to being given gifts, and like all unwritten rules they can be hard for autistic to people to understand. What I tend to do when I am given a gift is to say thank you once I have been given it, and again after I have opened it. If it’s a birthday or Christmas I will open them all then say thank you after that. I don’t know if this is the right thing to do, and it`s hard to really ever be able to tell; as with a lot of things you just need to do what you think is right, or what comes naturally to you. Being given a gift is meant to be a fun thing, and whoever is giving it to you most likely would not want to think of you being worried about what you are saying or doing in response.

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

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

AUTISM: when you plan for a change that doesn`t happen …

It’s a well known fact that change is hard for people with autism. If we are going to cope well with it we need to spend time planning for it and be ready well in advance. But what if the time comes and in fact things do not change as we thought they would? Is that a good thing, and can we just get on with our old routine as if nothing has happened? I cant speak for everyone, but for me the answer to this is No. If I have spent days or weeks planning for a change, and going over it again and again in my head, and then the moment comes and I am told it is not happening that will throw me even more than the original change would have done. I can give you a recent example of this, and attempt at least to explain why it impacts on me in the way that it does.

Last month my Mum was due to go in to hospital for surgery. She would have been in for a few days but then after she came out she would have needed looking after for quite sometime. Things would have been very different; I would have been doing a lot of the jobs, we would not have been getting as much writing and ASK-PERGERS?social media done, and my Dad would have been coming around more. While none of this is bad in itself it would have been different, and therefore I needed time to plan it and get used to the idea in my head. We talked it over a lot, planned what time I might get up, what time I might do the jobs around the house, how we might still get some writing and editing done, what I might make to eat, and just about everything else. We knew we had to plan otherwise we were leaving ourselves open to things going wrong. As far as we knew we had everything planned and set up to deal with the change that my Mum going in to hospital would bring – only she ended up not going in.

I should point out that we did know her operation might not go ahead, and in fact I was not at all shocked when I got the text from her a few hours after she had gone to the admissions unit telling me there were no beds, and she had to come home. It’s just one of those things that can happen, and has been happening more and more lately. But even though none of us were surprised at this change of plans it did put us in a strange place. We were all ready for things to change; for the normal routine to be put on hold for a while and a new routine to take its place, and now none of this was going to happen.

So what is meant to happen in this or similar situations? Are you just meant to wake up the next day and get on with your normal routine – that thing you have been telling yourself for weeks you wont be able to do. For me it does not work like that; it has been a month since my Mum was meant to go in to hospital, and I don’t think we have really got back to any kind of normal routine with work, the house, going out or anything since then. That’s not to say we have not done anything productive, but we have not done it in a routined way. We spent so long getting in to the mindset that our routine was going to change that we have been unable to change back, and get in to our old routine when there was no need for change.

I don’t know about anyone else with autism, but I can`t plan for two possible outcomes in a situation like this. I can plan for the change of routine, but that takes so much planning, and so much time to get used to I don’t have any space left to make a real plan for what will happen if that change does not take place. Just looking at this one situation, how can you make a proper plan for something that is so uncertain? It’s OK to know in the back of your mind the change might not take place, the operation might be cancelled, but what then? When will it be rearranged for? A week? Two weeks? A month? Will there be a set date for it? Or will it just be when ever they can fit it in? All these things would need a plan of their own, but we have no way of knowing which one we would be planning for until after the operation was cancelled. What about things that we decided not to do as Mum would be in hospital? Do we plan to do them now that she is not going to be in? Or would it be best to just leave them?

For me it’s too much to think about and too uncertain to plan for. I can plan for a change to my routine – even though that is hard enough – but I cant make any real plans for a change to the change. I just have to deal with that as and when it happens. But that is not easy to do; not knowing what is meant to be happening or when tends to lead to nothing or not much getting done, and the stress of this added to the stress of the change can lead to meltdowns. This has been the case over the last few weeks, and I am not to sure what we could have done to prevent it. As I say planning for something so uncertain is hard to do, and there is something of a feeling that with so much change back and forth meltdowns were bound to happen.

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

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

Inspiration Porn – an autistic point of view

Autistic people, and disabled people as a whole are not here to inspire you. They do not live their lives so that it can be filmed, put to an uplifting sound track and posted on Facebook. Most of you should know this, and you might even be nodding along to this blog, but it’s amazing how many people fall in to the trap of re-posting what has become known as “Inspiration Porn”.  But what is Inspiration Porn?  And why is it an issue for disabled people?

First of all what is inspiration porn? From what I can find online Stella Young the comedian, journalist and disability rights activist was the first to use to term ”Inspiration Porn” back in 2012. It refers to stories where someone with a disability is called inspirational for doing normal, everyday things just because of their disability. Think of someone using a wheel chair being approached by a stranger in the street, and told they are an inspiration. Then imagine that same stranger takes a photo to tweet, or writes a post on Facebook about what an inspiration this disabled person is.

So why is this so bad? Well inspiration by its very definition means being inspired to do something, or to feel something. But mostly you would say you were inspired if you saw, read or heard something that then pushed you on to go and do something yourself. But the word inspiration in terms of inspiration porn is used in a very strange way. Think “Autistic person gets date to prom” what has that inspired anyone to do? Is it in terms of “Well if someone with autism can get a date why can’t I?” Just break it down and think for a second. What’s the inspiration here? Someone with a disability did something day-to-day. Not only is that a headline, but it’s going to go viral and become world news. If you’re non-disabled try and put yourself in that story. You wake up and go to the shops. When you get home from work that night you log on to twitter only to find out that someone noticed you out shopping, and was so inspired, so moved by watching you decide what flavour crisps you wanted that they just had to take a picture and tweet it out. In fact what you did was so fantastic that thousands of people re-tweeted it. Makes no sense right? Well run through the same story again only this time pretend you`re autistic, or you have one arm. It could be anything. Do you think you would be any less shocked or perplexed to see yourself all over twitter?

The bottom line here is that disabled people are just living their lives. Yes some things might be hard for them to do, and yes doing day-to-day stuff might feel like a big deal to some people. But that’s their life. They are not doing it to try and make other non-disabled people feel better about themselves. If you are disabled and you feel like you might never be able to do something, and then you see someone with the same disability as you doing it sure that might inspire you. But it would inspire you to do something, not just post about it online. The idea behind it seems to be that disabled people just sit in a room all day doing nothing. If they do anything outside of this it must be a huge deal, and worth taking time out of your day to admire. Disabled people are not here to act as inspiration, but what makes it even worse, in my eyes at least, is that people are not even inspired to do anything. It’s not as if the people who share these stories go out and do something – they just talk about it, post about it, and then forget about it. That is not on any level inspiration.

Also let’s think about how these stories and images tend to be played-out. More often than not it’s not even the disabled person who is given the headlines. It’s “Cheerleader asked boy with Downs Syndrome to prom” Or “Staff member helps man with autism in busy shop.” In other words “Girl asked boy out on date.” “Staff member does what they get paid to do.” But as soon as you bring disability in to it their acts are elevated to almost hero status. The girl did not ask any old boy to the prom, no she took it upon herself to ask the disabled boy. And that act should inspire you to …well I am not sure? And the staff member doing their job, nope, a hero because even though they are paid to deal with the public someone with autism is clearly outside of that right?

People share stories like this because they want to feel there is good in the world. Because they know how much bad stuff happens to disabled people and how hard life can sometimes be for everyone, disabled or not. But this is not the way to show how good the world can be. This is just showing people living their lives, or doing their jobs. It’s like saying “look at them, they`re disabled but they can still get out of bed, and live with themselves. Even like that. My life is not so bad. I should go to the gym tonight.”  Just try and think before you share something like this again. Think about what it is, and what the real point of it is. Think has it inspired you to do anything? And if so why? Because the truth is most, if not all, disabled people hate inspiration porn. We don’t want it, it gives us nothing, and yet it focuses on us. And all so someone else can feel happy for a few seconds when they hit share.

Stella Youngs TED talk: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en

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

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

A Book Launch, A Thunderstorm, and an Overload.

There has not been a blog up on here for quite some time, and I feel I should explain why.  As some of you know it’s been a pretty busy few weeks. I had the launch for my new book last week and my time has been taken up with planning for that, and dealing with the overload after the event.

A book launch in itself is an odd thing; you write the book, send it off to the publisher, and then spend months waiting, and then editing, and then you are told it`s going to come out, and you just wait some more. A few months later there is the book. And more than a year after you started working on it, and almost a year from when you knew it was coming out, you have an event to mark the beginning of something.

We never had a launch event for any of our other books, but the publisher got in contact with us and told us we could set one up for my new book if we wanted. Even though we were unsure of what to do we said yes, and went about trying to set up our first ever book launch.  And all things considered it went very well. We of course were unsure what to do, but we managed to book a room, get flyers printed out and sort out food and drinks. Even though we ended up with a lot of food left over! We ordered books from the publisher, and advertised the event on twitter and Facebook. I can’t say we got everything right, as I say there was far too much food. But we got things as right as we were able. Yet on the night it still looked as if the launch was going to be a failure. We got there two hours before it was due to start to get everything set up, and about half an hour later, as we were setting up the food tables it started to rain. Within half an hour it was pouring down with rain, and a short while after that the thunder and lightning started. It just so happened that the worst storm to hit Manchester for a long time happened to hit on that night. We carried on setting up, but we all felt that the weather was bound to put some people off. We found out later that some of the trams had stopped running and some roads where so full of water they were impassable.  The weather calmed down somewhat in the twenty minutes or so before we opened the doors, but it was still a bit of a surprise to see over thirty people crowd in to the room. Thinking about how bad the weather was, and how easy it would have been for them to stay indoors, I am very glad they came out, and ensured that the launch was not a failure.

The book launch only ran for an hour and a half and felt like it was over in no time. I talked about the book and my reasons for writing it, and then sat behind a table selling and signing books. I was happy to see how well the book sold, and I hope it will be of use to everyone who bought a copy. As I said in my talk that is the main aim of the book; to help both the professionals who read it, and the autistic people they work with.

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Even though it went well I was very overloaded from it, and still am to some degree. This is why I am only now sitting down to write about the event. I am sure most of you know how hard an overload can be. It’s not the same as being tired, and I think it must be hard for anyone who is not autistic to fully understand how much an event like this can impact on someone who is. Not just standing up and giving the talk, but also all the one-on-one talking that came after.

Seeing as this was our first book launch and the weather was against us I feel it went as well as it could have. Everyone seemed to enjoy themselves. I had fun and sold quite a few books so all-in-all it could not have gone much better.  I don’t know if or when there will be a new book, and a new launch, but hopefully there will be another one sometime soon.  But with it being over at least for now I plan to get back to my normal writing and blogging.

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

9781849057080

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

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

Autism, theft and anxiety …

On Saturday I received a bank statement, and a letter from my bank telling me that their fraud department needed to get in touch with me. They wanted to check if some recent transactions had actually been carried out by me. After looking at my bank statement it became clear that the last five transactions on it were not actually mine. And in fact I had no idea where the money – which amounted to over one thousand pounds – had gone.

Crimes like this are fairly common place, and I wouldn’t normally feel the need to write a blog about something like this, but what did make me want to blog about my experience on Saturday was the fact that the actual crime itself, and any stress or anxiety caused by that, completely paled in to insignificance compared to the stress and anxiety of having to interact with people to get things sorted out. My first thought on seeing that the money was missing was not actually one of concern for what had been taken, it was a feeling of concern and frustration because I knew that even if this were resolved quickly it would still completely ruin my usual Saturday routine. This did turn out to be the case. Me and my Mum decided that the best thing to do was to walk to our local bank and raise the issue with somebody face-to-face so we got ready, and prepared to go out. My anxiety levels rose higher and higher as were getting ready, and walking to the bank. In the back of my head there was a mild anxiety about what would happen to my money, but as I say I assume such crimes happen all the time, and I was pretty confident that I would end up getting the money returned to me. There was still some mild anxiety around this as I wasn’t certain at that point. But that had nothing to do with the rising anxiety and stress. This came solely from the fact that I had no clue what I would need to do, or who I would need to interact with when I reached the bank. Would they be male or female? Young or old? Would we talk in an office? Would they ask me questions I didn’t know the answer to and put me on the spot? I had no clue. I knew that I had no choice but to go to the bank, and in a way I think that helped. There is always an option of course, but I wasn’t going to sit at home and simply let more money be withdrawn from my account. In terms of interaction within the bank it was fairly easy – my Mum did most of the talking – the only challenge being that we had to talk at the counter, and I was keenly aware of people standing behind us. We were advised on what to do and told to return home and call the fraud department immediately. There was an option to use a phone within the bank to do so, but we decided against this. Again it was public, but also I felt it would be impossible to concentrate in a busy environment such as that.

Far from being over, my anxiety levels began to rise even higher as we walked home. I should explain; I don’t speak on the phone, even with family or people I know well. And whenever there is any official business to sort out that can only be dealt with via a phone conversation I give permission for my Mum to speak on my behalf. But as I walked back from the bank I had no clue whether they would need to speak to me, perhaps simply to gain my permission to speak to my Mum, or even if they would insist on talking to me for the entire conversation. It wasn’t just the fact that I might have to speak on the phone, it was the fact that I didn’t know. I didn’t know who I would be speaking to, or what they would be asking me. In the end I did have to speak on the phone, only to answer a few basic questions and give my consent for them to speak to my Mum. This in itself was not an easy experience, but I will go in to more detail in another blog. After that phone conversation everything was resolved. They dealt with it quickly and efficiently and as I say I assume it is something they deal with every day. But the impact of the change of routine, stress and anxiety created on that day are still affecting me even now. I can’t say that it has nothing to do with the money being stolen – that would be silly – but in all honesty I think that is ten percent of the cause. The other ninety percent is to do with uncertainty, social interaction and change of routine.

This is one thing I have always found difficult about my autism; even if I myself react calmly to a situation, and I don’t feel particularly disturbed or distressed by it, there will always be something that comes along with that situation which brings anxiety and stress. I think a lot of people would find it hard to understand how little the theft of the money actually affected me. I assumed even when I saw it was gone that I would get it back, which I have. If you had seen me on Saturday you would have seen somebody who was clearly highly anxious, and no doubt you would have assumed it was due to the theft. But as I say, you would have been wrong.

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

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

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

Autism, Illness and Meltdowns:

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

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

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

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

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

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

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Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

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

Managing Sensory Overload …

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

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

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

 

My Discovery of Autistic Pride Day

Apparently on Saturday it was Autistic Pride day.  I have to admit I had no idea about this, and only realised it existed due to the tweets I was reading on Saturday afternoon.  This is why I am only posting about it once, and late.

Of course never having heard of it, when I started seeing people tweet about it, I wanted to find out more.  What is the idea of the day?  Why is there such a thing as Autistic Pride?  And might it be something I am interested in the nest time it comes around?

From what I can understand the notion of Autistic Pride day, or at least the way people choose to use it, is almost to counteract the effect of Autism Awareness month.  Not to imply that in itself is a terrible thing, or that all of the content put out during that month is bad.  But what you do find is that there tends to be a lot of conflict; some people want to `Light it up Blue` for example, while others are opposed to this, and there are stunts such as people locking themselves in glass boxes that are supposed to help autistic people. Overall, despite the idea of raising awareness of autism, it can be a conflicting and difficult month for anyone in the autism community, especially autistic people.  A lot of the tweets that I saw hash tagged with Autistic Pride day stated very clearly that this was not a day to raise awareness for autism.  It was not a day to raise money, or to push some cause, and it was also not a day for charities or carers or family members.  It was a day for autistic people simply to acknowledge each other, and take some level of pride in being themselves.

A lot of the tweets I saw made this pretty clear.  And there did seem to be a sense, especially with some of the younger autistic people who were tweeting, that it was a relief just to have a day where autistic people could actually take centre stage in the autistic community.  Now as I say, I don`t know a huge amount about Autistic Pride day, and what I have written above is just what I understood from the tweets that I saw.  But for me I like the notion of having a day that isn’t about awareness, that isn’t about how autism can impact on other people, and that isn’t even about a singular aspect of being autistic.  But is rather just a chance for autistic people to feel in some way part of a community of people similar to themselves.

So why would there be Autistic Pride?  Well this is just my personal view, and it will be completely different for other people.  I am not proud of the fact that I am autistic, but I am not ashamed of it either.  It is not something I had any control over so it is not an achievement on my part.  But for me, I feel that there is certainly an idea among neuro-typical people that if you are autistic, and you achieve something you have done that despite your autism, or by overcoming your autism along the way; as if I can be proud of who I am, and what I have achieved, but not that particular aspect of myself.  But I don`t see my autism as separate from who I am.  If I achieve something, for example I publish a book, then I am proud of that.  I am not proud of myself for `over-coming my autism` and publishing a book.  For me, and again this is just a personal opinion, the  notion of autistic pride is about saying that I can be proud of myself for doing things, or be proud of who I am as a whole, without discounting a huge aspect of myself, and what makes Me, Me.  If I am proud of who I am, and autism is integral to who I am, then in a way then yes, I suppose I am proud to be autistic.  And I think the notion of Autistic Pride could go some way to dispelling the myth that autism is a negative, destructive force, or a shameful part of us.

So is this something that would interest me in the future?  I don`t know if Autistic Pride day is an official event, or if it was just a hashtag started on Twitter so I have no idea if there will be another or not.  But yes it is something that I would have an interest in.  It is important to make sure that something like this doesn’t become corrupted, and end up being used by the wrong people for the wrong means – in the vein of Autism Awareness month and campaigns such as `Light it up Blue`  https://askpergers.wordpress.com/2016/04/02/light-it-up-blue-but-for-who/  The idea should always mean being guided by what autistic people want, and not by what non- autistic people feel is best, or appropriate.

For me it was nice to be able to go on to Twitter, and see people just saying that they are proud of who they are, and including autism in that.  This of course is something that you can do all year round, and you should do, but it would be nice to continue to have at least one day that is just about autistic people, and not the wider autism community.

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

Twitter https://twitter.com/ASKPERGERS

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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

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

Autism & Animals Meltdowns, Dogs and Me!

Like a lot of autistic people I have always struggled with meltdowns.  Ever since I was a very young child if I grow overloaded, or become too stressed, I can have a meltdown and shout, lash out, or break things.  Even though some aspects of these are less severe now than when I was younger, meltdowns are something I have struggled with my entire life.  There is very little that can help me to calm down, or relax when I am in the middle of such an outburst.  Or even make me feel better immediately after having one.  Possibly the only thing that can is having contact with my dogs.  My oldest dog Fred is nearly sixteen, and I am twenty-one, so for the majority of the time I have been having outbursts Fred has been there.

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I can`t remember how I first found out that Fred helped to calm me down.  But I know that after a while I started going to him after I had a meltdown, just to lie down with him, or stroke him, and that this would bring me a sense of comfort.  Even though Fred doesn’t always like being picked up, or stroked he always seems happy to spend time with me after I have had a meltdown.  And when I was younger just being able to spend that time with him would help me to relax, and calm me down.  I would walk round holding him and gradually become less and less stressed as I did so.  Even now as an adult the same is true.  Nothing calms me down quicker than being able to spend some time with the dogs.  I know this is something that is true for a lot of other autistic people, and even some people without autism.  Animals can just be a calming influence overall.  And if you are somebody like me who feels stressed and anxious every single day, and always has done, then having such a calming influence, that is also part of the family, is a huge help.

My dogs Fred and Poppy are the inspiration behind ASK-PERGERS?  new book Autism & Animals – the benefits of animals for autistic people, available for pre-order now J

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

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

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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