Tag Archives: explain

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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How Sensory Overload Impacts on Autistic People Part One – The Impact on my Mind.

It has been quite a while since I wrote a blog, and now that I am writing one it is about something that happened at the end of last month. Now part of that might be due to the fact that this month is December, and as I am sure most of you will know this can be a hard month for autistic people. It is all change, and routine and normal life can go somewhat out of the window. But we are still only in early December, and the bulk of why I have not been writing much, if anything, this month is to do with the events of November. The best thing for me to do is to explain what I did in November, and why that is still impacting on me now.

In November I went to three autism events. Twice as a speaker, and once just to man a stall selling copies of my new book. Now I should say before I go on that I enjoyed all three events, and was happy to go to them. Nothing in this blog is meant to be a comment on those events themselves. But it is worth looking at why I, and other autistic people, can find events like these so hard. And some of the particular after-effects that I have had to deal with.

 

  • Build up: I don’t feel nervous or worried about the events beforehand, or at least not that I am aware of. But I know the feelings must be there somewhere. I find it hard to focus on doing work or even doing something relaxing like watching a film if I know I am going to have to go to a busy event in the next few days. Even though I might not be aware of this build-up of stress and anxiety, it can take its toll.
  • Overload: Events such as the ones I went to, full of stalls and guest speakers, tend to draw quite a lot of people in. They are noisy, full of people moving around, and all in all very difficult places to spend much time in if you have sensory issues. Perhaps I must take my share of the blame for not going outside and having a break from time to time, but once I get started on something I find hard I like to just get it all done. If I take a break to go somewhere quiet there is a high risk that I might not be able to go back in, and get on with the work I need to do. So I end up spending anywhere from two to five hours in a busy, noisy, and overwhelming environment. Again this leads to a build-up of stress and anxiety.
  • One-on-one talking: When I am at an event, be it on a stall for ASK-PERGERS? or doing a talk, I end up with people chatting to me. Now this is a good thing: it gives me a chance to sell my book, and also to make contacts. Plus the whole point of what we do is to help other autistic people, or their families by giving advice, so a chance to talk is good. But it does take it out of me. It’s fair to say that in a normal month I might chat one-on-one with five people at most. Now this is partly due to me not being at university at the moment, and if I were it might be more. But five is about average for this year. But at an event like this I might talk one-on-one to fifteen people in the space of a few hours. If I do two or three events in a month it might be something like fifty people over the space of those events. All that one-on-one talking wears me out, and pushes me more and more in to overload.
  • Not much time to recover: If I do a few events in a month then I don’t have any real time to come down from one before I have to start planning for the next. It might take me a week or more to fully get back to normal after something like this, but of course I do not have that time if I have more events to go to.

So what does this all mean? Well it leads to a build-up of stress and anxiety that can only truly come out when I am done with all the events I have planned. Not that it does not affect me in-between events. It does. Last month I was so overloaded that I found it hard to do anything other than the events I went to. When I talk about that a lot of non-autistic people nod their head and say something like “Oh yes I will need to crash out for a bit too.” Or “I get tired as well.” They do not, nor could they fully understand what an overload is. If your lap top overheats and shuts down because it cannot cope with the overload to its system it can’t do anything. It just crashes and goes blank. And I find it to be very much the same for myself. If I am overloaded I can’t do anything, not even things that relax me. I can’t pick which film to watch, and in fact I don’t even want to watch anything. I can’t sit and read, or do anything else fun that might relax me. I spend most of the day just walking from room to room not knowing what to do, and doing nothing. It’s not a case of going “I am tired now, better just watch some TV then I will feel fine.” I might be unable to do anything, and I do mean anything, for days, or if it’s really bad even weeks. The truth is November was such a comparatively busy month for me that it took me quite a long time to come back from the overload. It’s really only this past week that I have been able to start doing things of any real worth, and like I say this is the first writing I have done this month.

I do want to do more work, and my hope is as I do it I will become more used to it, but also work out ways to minimize the impact of the overload. But I wanted to take the time to try and explain to you how even though I might be more than able to stand up on a stage for twenty minutes and do a talk, or man a stall for five hours, the unseen impact of this can last for days, or even weeks.

I also wanted to take the time to write about the physical impact the build-up of anxiety can have, but I feel that should be a full blog on its own. So that should be out later this week, or early next week.

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

The impact that visiting hospitals can have on autistic people.

Most people with autism will have to visit hospitals at one time or another just like anyone else. This is not about having to stay over night, but just about visiting for a few hours, be that due to going to A & E, or an out-patient appointment, or for the main part visiting someone else.  The emotional impact can of course be huge, but mainly I want to use this blog to talk about the hospital itself, and why just being there can be overwhelming, and stress-inducing for autistic people.

 

(1) Noise: Let`s get this one out of the way first. Hospitals are noisy places. They are full of people banging about, moving trolleys, shouting to each orther, crying, all talking at once and just generally making a racket.  Most of this noise can’t be helped, but that does not make it any easier to deal with.  Right from walking in the doors it is noisy, even if not especially on the wards. If you`re visiting someone then what time is it?  Well visiting time, which means everyone else in crammed in to that room or ward at the same time as you.  Young kids screams to adults who can’t seem to stay of their phones.  There is a bit of everything in hospital wards.

(2) Emotions: This one might be a bit harder to explain, but let me try. When I walk in to a hospital I can almost sense the emotions all around me. The staff have heightened levels of stress, there is grief and fear everywhere.  Of course there are good emotions too, but they all blend it to one.  It`s like walking up a mountain; you start off at the foot – AKA the car park – where things are normal, and the higher up you get the lighter the air. The harder it gets to breath. Only the farther you go in to the bowels of the hospital the more the air is tinged with strong emotions and feelings. It clogs up the atmosphere and makes it heavy and oppressing.  For someone who finds emotions hard at the best of times it can be like walking out under the boiling sun.  Yes I can do it, but being in such a harsh atmosphere takes a huge toll on me mentally, and physically.

(3) Smells: We all know this and everyone says it – hospitals smell funny.  Of course they do if you think about it, they are full of people being sick, going to the toilet where they are not meant to, bleeding, and well, dying.  They have to do something to cover up those smells so they seem to just blanket the whole place in cleaning fluid.  I don’t blame them, but as you all know that hardly smells nice!  For people with sensory issues though it can smell far worse.

(4) Change:  I wanted mainly to look at how things are inside the hospital, but of course visiting a person in hospital is going to mean a change of routine for most autisitc people.  But even when you get used to someone being in hospital there is still a  lot of change – you might go and visit only to find someone has been moved to a different room or ward.  This might happen more than once, meaning you can’t really get to grips with where you are in the building even if you go each day.

(5) Autism is not the main issue: What I mean by this is that when you go to a hospital to visit someone, or because you need to go in to A&E, your autism is not going to be the first thing on peoples` minds. If you are visiting then the staff working there might not even know you are autistic, and your family might have a lot on their minds, and not be able to notice if you are becoming overloaded. You might go yourself and plan to not stay long, but get caught up in something going on and have to stay a lot longer.  And the time you are there your autism is not going to be the first thing that other people are thinking about. You might not be getting the help and support you need as there are others there who are, rightly so, the focus.

 

These are five reasons why I think hospitals can be overwhelming, and difficult places to visit if you are autistic. That’s not even getting in to how hard it can be to have to stay in hospitals for any length of time. I for one take days to recover just from going to visit someone once. This can make it very hard to have a sick relative. I find myself torn between wanting to go and visit, and knowing the impact it will have for days.  And not just on me, but on those around me affected by my mood and the way I act, for example my increase in meltdowns.

 

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