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Autism and issues with my routine ….

Last week I wrote a blog about my new routine and how it has been helping me get more done, and feel better about myself, and while that’s true it would be misleading to leave it at that, and not talk a bit about some of the things that can, and have gone wrong with it. These are things that have gone wrong this time, but could also go wrong with any routine; so they are not issues with the routine itself, instead they are things that happen that impact on if, and how I can stick to my routine.

Sometimes it`s hard to establish a routine: What I mean by this is that for me if you do something a few days a week it`s not really a weekly routine. So when I plan out what I will be doing on each day of the week (planning to do the same thing each day) and then have to say “ Well not on Wednesday because I have to go out, and not on Friday because I have to go out then too.” It feels like I am not taking the time to get myself set in a new routine. Of course life throws up things you need to do, and I would not be able to stick to the same plan every day of my life, but if I can`t even stick to it for the first week how am I meant to feel like it`s a daily routine? If I only do it a few days each week it`s hardly a routine. The best thing would have been to clear a week, and do my routine each day so that I was in the swing of it then start to change it as, and when it was needed to fit in the other things life throws up. This way I would have been set in my routine, and more able to get back to it if it had to be changed one day.

Missing one part of it can mess up the whole day: If I say I am going to be up at six, work out and start my work by eight, and in fact I do not get up till seven then that can throw my whole day off. Why? You might be asking. I am at home all day after all, so what if I do the same things just an hour or two later than I was planning? And it`s a good point – that would be the smart thing to do. But sometimes it is not as easy as all that. Often I will try to get back on track after something has not gone to plan, and just find myself unable to do so. Try as I might the days where things go wrong early on hardly ever end up going well. If I am going to make a routine work I need to stick to it fully. Something as small as getting up a bit late can throw me off track for the whole day. Perhaps planning to get up as early as I do is the issue? I like to be up early and enjoy working in the mornings, but if I do have the whole day to work with perhaps I am less likely to fail to get up if I plan to get up a bit later? Or perhaps I just need to make sure I get to bed at a better time so I am less tired in the mornings? Either way that issue can be dealt with, but the point is that anything that goes wrong can mess up the whole routine for any given day.

Not having a plan B: Sometimes things will happen that you just can`t control, for example I get hay fever and sometimes it`s pretty bad. Some days it`s normal; just a blocked nose and a bit of sneezing – nothing too bad. Nothing I cant work through. But every now and then I wake up and it`s bad; I am sneezing every few seconds, my head hurts, and I am sweating and burning up. I feel dizzy, and at times like this there is just no point trying to work. It does not happen often, and only ever lasts a day at a time, but when it does it messes up my plans. I spoke about how I need to plan my rest time too in my last blog, or I end up doing nothing, and this ties-in with that. If I find myself waking up unable to do my routine I am often unsure of what to do. Do I try and do it? Do I admit that I can`t and do something else? What else is there to do? If I had a plan B, a back-up plan to be used on days when I can`t stick to my routine this would not be an issue. The plan could be something as simple as “Watch a few episodes of a certain TV show”. That might not sound like much, but when I am overloaded or feeling the impact of a sudden change of routine it`s very hard for me to find something to do. This is in part due to the fact that I don’t want to do anything, and just can`t get exited about doing things when I feel that way. Therefore, if I were to think about watching a T.V. show on the day I would not want to do it, but if it was pre-planned “If I am unable to do my routine I will watch this show” the chances of me forcing myself to do it (and enjoying it) are much higher. This cuts down on the risk of me just sitting around feeling overloaded after a change to my routine.

Having too much free time: Free time is good, and for me it is needed; I don’t like working to a routine where every minute of the day is planned beforehand (some people do, and it`s just a case of what works for you). But I found that I was working until 12 and then the next thing I had planned was to read at nine at night. This meant I had a lot of time to fill. It`s not to say I did not spend any of that time well: I got films watched, I read and I did work around the house, but I do think perhaps giving myself so much free time in the end was not helpful. I could have half that time, and still have a lot of time to relax and do whatever I want to do. Again how much time is planned, and how much is set in the routine will depend on the person, so to a point I am just trying things out to find out what works for me.

So overall I would say my new routine is a good one; it has helped me somewhat, and has definitely made me feel better on the days when it has worked, but it`s far from perfect yet. But that’s OK, as I said it`s about trying things out, seeing what works, what helps and what makes things worse, and coming up with a plan that helps me to get more done and feel better. That takes time and there might be a whole load more things to learn before we get there, but as long as we get there in the end that’s the main thing. And even in the mean-time having some kind of routine, some basic plan for at least parts of my day is helping me do more than I would if I had nothing at all. Things might not have worked out right away, but they hardly ever do and a good routine is something that’s worth taking the time to get right.

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

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

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

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