Tag Archives: me

Sensory Overload – what triggers it and how it feels for me.

I am writing this at half seven in the evening of what has been a fairly productive Monday. I was unsure when I woke up just how productive I would be able to be today because once again I am coming down from an overload. This particular overload lasted two full days; two days where I was unable to do anything, hardly even watch TV. I want to use this blog to talk a bit about why I was overloaded, and how getting this overload each time I go out to try and do something outside of my routine makes me feel.

So what brought on this two day overload? As you may or may not know – depending on when this blog goes up, and how closely you follow my blog – I went to an autism-friendly Mayoral Hustings on Thursday of last week organised by the Greater Manchester Autism Consortium and the N.A.S , and that is what brought on my overload on Friday and Saturday. This blog will not go in to any of the politics of the event, nor is it in anyway trying to criticize the event itself. It was a well run event that I enjoyed, and was glad to have had an invite to. But the fact that it was an autism-friendly event and therefore much better for me than a normal hustings would have been, and yet it still left me feeling so overloaded, should serve to drive home the point of the blog.

What does an overload feel like?

If we are talking about the lasting feeling of being overloaded, not the short-term feelings I get right before a meltdown – and for the point of this blog we are – then I would say an overload feels somewhat like I imagine a frozen computer might feel like. I can`t do anything. This might sound over the top, but I can assure you it is not; I can’t think clearly, I can’t make up my mind about anything, I can’t focus on anything, I can’t enjoy anything, and I can’t even do mindless things such as watch TV to relax. I am stuck; frozen for a day or two just wishing the time away till my overload clears and I can go back to my life. In fact sometimes this frozen feeling can last for a week or more. Sometimes there will be physical pain too; my ears and head will hurt to the point where the smallest of noises can induce pain, and my body will ache and feel tired in the same way it might after a heavy work-out. I find myself stuck in a state of feeling the time pass; knowing the day is going to waste, with me doing nothing more than looking at the wall and wishing the time away, and yet being unable to bring myself to do anything. And this in turn leads only to more stress, more frustration and often to meltdowns.

What brings on an overload?

For me, and lots of other autistic people, an overload can be brought on by doing things outside of our routines, and an increase of sensory input, for example noises, sights or smells and social interaction. All these things are hard for us, and I know that for myself it only takes a small amount of one, or all of them to push me to the point of overload. If we take the autism-friendly Mayoral Hustings, and break-down what I did that day you can see how it led to an overload.

First of all I had to go in to town which is not something I would normally do, so even the idea of the event itself started off the path to overload. There is also the fact that I don’t often go out on my own, and have hardly ever been to any kind of event with out my Mum or Dad with me. That in itself is a big change, and even though it was good to be able to go out by myself I am sure doing so for the first time still added to the stress. That day my morning routine had to change as I had to get myself ready to go out, meaning that even though I was used to the idea I had to put that idea in to practise – which, as I am sure you all know, is a whole different thing. In order to get to town I had to take a tram. Some days the trams are quiet, and some days they are noisy. The tram there was not too bad for most of the journey, but a few noisy football fans did get on around half way. This meant that before I had even got off the tram I had a lot of noise to contend with. I was early to the event as I try to be to most things, so I did not have to walk in to a busy room which was a plus. But as the room filled up it did become noisier, and it’s the build-up of noise that brings on an overload for me. A loud noise on its own might be unpleasant, but it won’t push me to be overloaded, but as the noises build-up: the talking, the moving of chairs, the scraping of shoes, coughing and such then it pushes me deeper and deeper in to an overloaded state. I was there for around two hours and there was something like seventy people in the room, so you can guess how much sensory input that was. There was also the matter of making small-talk with the people around my table. Now I did not have to do this; two of them knew me and would have been fine if I had not talked, but I wanted to. Talking and chatting might be hard for me, but I do enjoy it. I don’t want to go to events, and not have the chance to talk to people. But I am aware of the impact it has on me – as I said above social interactions play a large part in overload.

You can add to this the fact that I was meeting with and talking to political figures, and while I don’t feel intimidated by meeting people like that there was still the awareness that I was going to be on the spot talking to them, and asking them questions. It’s not a small event for anyone, but for someone with autism you can see how the day was full of things that can lead to overload, and there was no real way I was going to be able to do it without ending up with an overload.

Isn`t losing two days for one event too much of a price to pay?

This is what I found myself thinking on the Saturday. I enjoyed the event very much and loved having the chance to ask my questions, but after forty-eight hours of overload where I was unable to do anything I did begin to question if it was worth it. For one good event like that I will have two or three days where I have to do nothing, not even relax, just do nothing; drift around my house and wait for the hours to pass until I can get back to normal. It’s easy to ask myself should I go along to events like this? Should I give talks on autism as I sometimes do?, What’s the point of it all? But the question I always ask myself when I start to think like this is what would be the point of not doing it? Yes I would be avoiding the overload, but I can get overloads anyway from things I can’t get out of such as going to get my hair cut, or seeing family. I feel like if I were to give up the things that I enjoy, and that make good memories just to avoid overload I would regret it later in life. Yes it’s hard, and yes it’s not nice knowing that I won’t be able to blog about an event the day after I go to it, or have a nice relaxing day off after a day of hard work, but perhaps a better way to deal with this, than just stopping the things I enjoy, is to look at how I react to my overload.

Whenever I get an overload, and become frozen I always feel I should be doing something. “I cant just do nothing” I say. But as my Mum always says “Why not?” The idea of spending more time in bed on a day when I am overloaded never made sense to me. I get up at the same time, and sit around waiting for something to happen. But perhaps the key to all this could be something as small as training myself to do nothing; I don’t have to pick a film to watch, or a book to read if I can get myself in to a mindset where doing nothing is OK. In fact it’s needed.

I want to be a writer, and along with that a public speaker, and perhaps also a journalist and documentary film maker, and without trying to sound cocky I know I have what it takes to be all of these things. But I also know there will be a price to pay. I have to get used to the idea of paying that price, and try and work out how to lessen its impact rather than giving up on the idea of doing what I love. But on days when my overload is at its worst, thinking that way is hard to do. And I should also point out that I have cancelled a lot of stuff over the years due to overload, and I am sure I will cancel a lot more, but over all, and in answer to my own question, overload is bad, but yes it is a price worth paying for doing the things I enjoy – for me at least.

Let me know what you think in the comments, as how ever much I try, I can only really speak for myself.

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?

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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

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?

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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

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?

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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

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?

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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

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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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

Employable me

(Note: I have yet to watch this weeks episode)

For the last two weeks I have been watching Employable Me – me and seemingly everyone I follow on Twitter.  I just wanted to write a quick blog to discuss some of my thoughts on the show. When I first sat down to watch it I have to admit it was with a certain amount of trepidation. Whenever I watch anything that deals with autism I always have that mix of feelings; hoping it’s going to be good, but ready to cringe if it’s not.  But I am happy to say that so far Employable Me has not made me cringe at all.

We already know as autistic people, or as the families of autistic people, just how hard it can be for someone with autism to find work. Not everyone of course, and some people have no issue getting a job.  But for most autistic people it is hard.   A lot of that hardship comes not from their autism, but from the attitudes of employers.  It’s good to see that the show deals with this.  The main point for me, and one the show seems very keen to make, is that autism will not stop you working, but pre-conceived ideas about autistic people might.  Now that being said, I know for some people their autism might stop them from being able to work, but what I mean is that not everyone who is autistic will be unable to do so.

People by and large, whether they are autistic or not, want to work. They want to feel as if they can take care of themselves, and their families, and that they do not have to rely on the state to take care of them – that they are not at the mercy of changes to benefits. Getting a job can have all kinds of advantages for anyone, but for autistic people it can also provide routine, and a sense of independence. Not only that, but it’s clear to anyone who knows anything about autism that at times it can benefit an employer to have autistic people working for them. I have written a lot in the past about the positive traits that can come with autism. Such as an eye for detail, dedication and creative thinking.  And it’s good to see that the show highlights these instead of just trying to make us feel sorry for autistic people.

Overall I am enjoying the show, and I can see why it is going down so well among autistic people. It highlights a very real and important issue that a lot of autistic people face.  An issue that lots of autistic people have been trying to draw attention to for years now.  Putting it out there in the public eye must be a good thing. Another thing that I enjoy about the show is that is manages to portray how funny things can be without feeling like it is making fun of autistic people.  It is funny in parts because that’s just how life is. But despite that is does not feel as if it is set up to make light of people, and their autism. I plan to keep watching it, and see how it goes on.  Hopefully it will continue to be good.  Let me know what you think of Employable Me down below.  Do you enjoy the show?  Tell me what you like or dislike about it.

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