Tag Archives: ASC

Why my anxiety levels rise when people come to do work in the house.

Over the past few weeks we have had to have quite a few jobs done around the house. As these are jobs we cant do ourselves this has meant having to have tradespeople around such as joiners,and electricians. You might think that having people in the house and the noise they make when working would be the worst part of this, and for some autistic people it might well be, but for myself – and I am sure for some other autistic people – the worst part by far is waiting for them to come. I don’t just mean waiting for a few hours for them to arrive on the day either. Let me explain what I mean.

In my mind when I make a plan it’s a set thing; if I have to be somewhere I want to know the day and the time I need to be there, and the chances are I will be early. If I can’t make it I will get in touch and give as much notice as I can. You might put that down to my autism and you may well be right, but I also think it’s just basic courtesy. If you are going around to someone’s house you should at least tell them when you plan to arrive! Yet this basic information is almost impossible to prise from most people who do come around; want someone to come around and do a basic job in the house? They will be with you some time early next week. Well what day is that? Monday, Tuesday at the latest? Unless they get busy with something else then it might be Wednesday. OK, and would that be morning or afternoon? Morning, unless they run late then, afternoon.

Ah, OK, cool, just let me put three days aside for a half hour job then. Due to my autism it is almost impossible for me to focus on doing anything if I know I have someone coming to the house. As strange as it might sound to non-autistic people on a day when I have workmen around even though I am doing nothing, and they are doing all the work just having them come around and do the job takes up all my energy for that day. The waiting in, the knowing I will have to have some level of social contact, the not knowing how long the work will go on for, the noise, the disruption of having people in my house and what that does to my routine. Having to set one day aside to deal with this is bad enough, but it must be done in order to get things done around the house. But if this goes on for three or four days as it will if people are not clear on when they are coming, then you can end up wasting half the week being sat round feeling anxious not knowing if someone is coming around or not!

I am not quite sure why people find it so hard to look at a diary and see what day they are free before making plans instead of putting aside big blocks of time where they may or may not come around if they feel like it. It means instead of the anxiety building up over one day, and then being able to get back in to the swing of my routine the next day, you end up having two or three days of build up and if you’re lucky then having someone come to do a job. Which brings me on to the next issue…..

If you commit to being somewhere at a set date and time and you can’t make it you have to get in touch and explain that right? I think we can all – autistic or not – agree on that. But if you just say you might be somewhere that seems to be some kind of get-out clause. If you said you might come around at six and you realise you can’t you don’t have to ring up and tell the people whose anxiety has been building up all day because you only said you might be there. Never mind the fact that they may well have changed plans for you, changed their routine, waited in and are going to be on edge for the evening in case you turn up. It takes a few seconds to send a text saying “Can’t make it, call tomorrow to rearrange.” And yet the amount of times someone has just not turned up without any form of contact is, for me at least, shocking. Again this is not just about the impact on my autism, though that can be huge. Waiting in all day unable to do anything only for the person not to turn up without any contact to let us know of this change of plans does add to my levels of stress and anxiety, but it also means the day ends with me knowing I have to do it all again. Not only do I have to do it all again, but when I do there will be even more anxiety because now who ever it is has a track-record of not turning up. So I will half expect them not to turn up again which just adds a whole new level to things. But as I say it’s not just that. Again it goes back to common place courtesy: make a plan, make it clear and then stick to it. If you can’t then have the decency to let who ever you made the plan with know.

And when I say make a plan I don’t mean text the night before and ask if you can come around and do a job. The answer will always be no. I need notice, not a few hours notice, but a few days notice at least. This should not be too hard to understand or to give. I do understand that for most non-autistic people this would not be as big a deal as it is for me, but still people have work or university; they do things with their lives’s so you would think that a few days notice would be important for most people. Again it comes back to the fact that making a real plan, showing that you will take the time to plan things out, and then stick to them is always better than doing things on the spur of the moment.

It is hard to get someone who is not autistic to fully understand how disruptive and stressful having someone come to the house to do jobs can be. The levels of anxiety and the change in routine make it very hard, but I honestly believe that if it were more clear and well arranged the stress would not be half what it is. If I knew someone was coming at seven on a Wednesday evening then yes it would still be hard to focus that day, yes I might still feel overloaded once they had gone, but at least it would then be over. A plan would have been made, I would have be able to make plans for that day knowing that work was going to be happening, and how that would make me feel and from the next morning I could be back to my routine.

But if I have to put aside two or three days in case someone comes around only for them not to come around, and then I have to go through the same act the next week just to get one small job done I can lose the best part of two weeks just for an hours work. As well as driving my stress levels up this makes it much harder to get the jobs done on the house that need doing. If it takes two weeks of stress to get one job done I want the next few weeks to catch up on work I missed due to the change in my routine, plus the last thing I want to think about is trying to make more plans to get jobs done. This means other jobs that need doing get left because I just can’t put up with another two or three weeks of messing around just to get someone to come round and do them.

I understand that not everyone knows about autism and even if they do they don’t know I am autistic, but again I think what I am saying should be true in most cases. No one wants to wait three days to find out if someone is coming only for them not to turn up, no one wants to be told someone will be there some time between ten and seven, and no one wants someone to cancel or change plans without notice. The difference is for most people it’s a minor irritation, but for myself and other autistic people it can be a massive disruption and cause of stress/anxiety; something that takes an already stressful event and makes it ten times harder than it needs to be. I can do work around dealing with the stress of knowing someone is coming, and I can try and get myself to a point where I can do other things instead of just wait. But it can’t all be me, at some point I need people to meet me half-way, and at least let me know what day it is I will have to prepare myself for!

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?

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

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The sensory impact of a cold.

I have talked in the past about how in the days before coming down with some kind of illness I can be prone to meltdowns, almost as if I am reacting to the illness before I even know I am ill. When I say illness this can apply to anything, even a simple cold like the one I woke up with this morning. But I have not had any meltdowns for some time now, and I felt fine in the days leading up to this, but that’s not what I wanted to talk about in this blog. As I say I don’t always have a meltdown before I come down with something, but having a meltdown or being stressed-out/ grumpy with those around me can be a sign I am coming down with something. But what I noticed this time that I have not thought too much about in the past, is how much worse my sensory issues tend to get when I have a cold.

I find it so much harder to be around others (I have spent most of today in my room) and I think this has quite a bit to do with the sensory impact of a cold. Most colds don’t come with any pain (if you are unlucky you might get a headache) but they do hit your senses. Take the one I have today – no pain at all to speak of, but a blocked nose, a fuzzy feeling in my ears, and a constant strange taste in my mouth. At times I find myself getting hot and starting to sweat, and at other times my eyes start to water. I have noticed today more than ever before how stressful those things can be. It feels as if I can only spend a few minutes around other people before I have had enough, and I start to snap at them, or just have to go and be on my own again. That’s not because of how bad I feel, as I say it is only a cold, in fact if I were in pain I know that I would cope much better. I have a high pain threshold and can keep quite calm when in pain. But I think the key thing about a cold is how it hits all your senses.

It’s hard to explain, but it’s as if my body is having such a hard time processing all this extra sensory input that I hardly have any space left for any more sensory input, such as people talking to me.

I tend to find that pain is much more easy to deal with; it might be bad but it tends to stay in one place, and it’s easier to cut off from the rest of my body. Even when I have been in the worst pain of my life I have been much more able to sit and talk with people, and process what they have to say to me than I am when I have a pretty normal cold. So it’s not just a case of me feeling sorry for myself. But when all your senses are working overtime, thrown off balance and struggling to keep up with what is going on it’s hard to have any space/ability left to cope with other day to day sensory inputs. This is something I have never thought much about before, but when I talked to my Mum about it she said that she often feels the same thing. Because I am autistic I do not process sensory input in a passive way, and therefore the more inputs I have to deal with the harder my mind has to work to process them all. Processing what someone is saying to me takes a lot more active engagement for me than it would for someone who was not autistic, and when I am thrown off balance by strange sensory input (such as feeling suddenly very hot, or having a blocked nose and the strange feelings that come with that) it seems to have very little energy left to engage with, and process anything else.

You could make the argument that if you feel ill, even if it’s only with a cold, then you are going to be more irritable and less able to focus anyway, but as I say this is something I have noticed specifically in relation to colds.

As soon as my nose starts to clear, and my ears no longer feel as fuzzy I can get on with much more normal stuff again and spend time around people, but when I am fully in the grip of a cold I can barely even be around others for a few minutes before I am overloaded, and need to get away from them. I find myself much more able to keep working through pain than I am to work with a cold, and overall colds are much more disruptive to me than just about anything else. I do think there is a link between the sensory effect of a cold on the body, and my lack of ability to deal with day to day sensory issues such as people talking to me when I have one.

I wonder if any of you have noticed the same thing? Does a common cold have more of an impact on you than feeling real pain would? And if so do you think that impact is due to the sensory impact of a cold?

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?

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 why I haven`t been on social media recently …

I have been trying to do ASK-PERGERS? a bit over the last few days, and posted a blog a few days ago, but before that I had not done any work or even logged on to ASK-PERGERS? for about a week. I run ASK-PERGERS? with my Mum so you might have seen a few things being tweeted out by her in that time, but I was not on at all. And it was not a planned break; I just ended up not going on, and not working on my writing for a week. So why was this?

The whole point of ASK-PERGERS? is that I talk and write about autism; I write about the positives of it and what I enjoy about being autistic, but also the negative side and those things that I find hard. If you have a blog and you want to grow it you need to post regularly, the same if you want to improve your social media presence. I want to grow both the blog and our following on social media – and it’s not that I plan on making a lot of money by doing this, that’s not how it works – but of course I want to connect with more people, and get my writing out there as much as I can. Like I say to do that you need to be putting some work in most, if not every, day and yet by the very nature of being autistic that’s not always easy to do. When I am stressed, overloaded or struggling to be able to do anything due to lack of routine, or underlying worries it can be hard to find the energy to even log on to social media, and find things to share. Or my mind is just so overloaded that I don’t even think to do anything on ASK-PERGERS? The week I had away from my writing work recently was a mix of those things. I have been finding it hard to make and stick to a routine. I was trying one, as I put in another blog, but due to some underlying issues it’s been hard to stick to. That has been throwing me off, and meaning that for quite a while I was getting up unsure of what to do; feeling stressed and overloaded with nothing to bring me down from that. Because I did not have a routine I found myself going to bed a lot later each night. I have found if I don’t have plans for the next morning I will just stay up until I feel so tired I have to sleep. But I don’t sleep in much in the mornings so this leads to me being much more tired the next day, which in turn makes it harder to plan the day out, and stick to that plan. For a lot of the time doing ASK-PERGERS? just did not come in to my head, and when it did I was so tired and overloaded that I just did not find myself wanting to do it, and would put it off and forget about it again.

I don’t want to make a big deal out of the fact that I did not go on social media for a week; I know that it’s fine, and I can just pick up from where I left off, and that’s what I have been doing. But I just wanted to call some attention to the fact that sometimes even things that seem small, like going on to Twitter to work, can feel so overwhelming that they end up being left for days on end. And no matter how important something is to you, sometimes overload and stress make it almost impossible to do.

As I say I did not plan to take a week off; in fact most days I thought that I had better do some work on ASK-PERGERS? but it just never happened. In itself it’s not a big deal, but it is a good example of how things can slip away. Once something starts to feel stressful, or I start to feel too overloaded to do it then it can easily run in to weeks before I am able to get on with it again. It’s a strange thing that the very nature of what I am writing about can make my writing, and work on social media, hard, but that’s how it is. But then again it works the other way around too; of course now I have gone from finding it hard to write, and do work on social media to writing about finding it hard and posting that to my blog. Not doing ASK-PERGERS? for a week is just one example of how things can drift away and get left if I feel overloaded, or do not find a way to work them in to my routine. If I have a good routine or plan for the day, and know what I am doing and when and do not allow myself to get to the point of being too overloaded, then I can be quite productive day to day. But if things are not planned out well, or I am having a day where I am overloaded or overly-stressed then I can often end up doing nothing at all, not even the seemingly small, easy things that I enjoy and want to do.

PS: I wrote this blog last Monday and yet I am only just getting around to editing and posting it now. But it is still as true now as it was when I first wrote it. I ended up taking another break from social media for around six days due to a mix of the same reasons talked about above. I think the fact that it took me so long to be able to work on this blog again, or even think about it after it was written, just helps to back-up what I say in it.

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?

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

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?

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