Tag Archives: meltdown

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.

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Overloads, Meltdowns, and a missed Appointment ….

I have spoken a lot in the past about how overload can affect people with autism, including myself.  And how important rest days are.  But I have to admit, even though I understand in principle how to avoid feeling overloaded, or what I need to do when I am in a state of overload, it has been very hard for me over the past few weeks to put these in to practise.  Even just looking at the past week as an example, I feel like I have been in a near-constant state of overload.  I have been walking from room to room unable to do anything, simply lacking the focus and motivation to even sit down and watch a film.  I have had an outburst, brought on by this stress.  Because it is stressful.  Imagine being imprisoned in your own home.  But one of the terms of your imprisonment is that you can`t use anything in your own house.  You are surrounded by the things you like, the things you enjoy doing, and yet you can`t do any of them.  The hours must be spent instead doing, well, doing what?  Sitting?  Standing?  Walking from room to room?  Going upstairs, looking round and coming back down?  And so on, for hours or even days upon end.  You can`t go to bed and sleep through it because your mind is far too active to sleep.

So what brought this on?  The roots of this overload, and the stress and outbursts that came as a result of it, come from going out at the weekend.   Not going out clubbing, just going in to town the same as anybody else would.  Not something I would normally do, but still not something I thought would result in eight days of overload.  Now that may be a bit of a simplistic way of phrasing it.  The past year has been full of stressful events that have of course left a mark, and I did go out again on the Wednesday for something relating to work.  But I guess that`s the thing; it`s hard to tell recently where one overload stops and the next one starts.  It seems that instead of having an overload every now and then and most days being spent working on my writing, or getting on with whatever I choose to, I am overloaded most days and the days that I can actually work, or function at all, are the rare days.  But it is getting to a point where I feel my overloads are starting to incur in to my life more than they ever have before.  Let`s take yesterday as an example.  What I was supposed to do was to travel to my university via tram and talk with one of my lecturers about help and support for my upcoming second year at university.  I got half way to the tram stop before I had to turn around and come back home.  I knew that I was too overloaded to be able to function properly or contribute anything useful to this meeting.  All that would result from it was yet more sensory overload, and in all likelihood another outburst.  In a way it is positive that I was able to recognise that there was nothing to gain from forcing myself to go to something I was too overloaded for.  And I certainly wouldn’t be getting any work done today if I had of forced myself to go to the meeting yesterday.

You might have noticed that this isn’t a blog full of tips of how to get out of a situation like this.  If I had them I would be using them and there would be no blog to begin with.  I am unsure whether this is a positive or a negative blog.  On one hand I am telling you that I am finding it hard to function, to get things done and that I am near-constantly overloaded, but on the other hadn`t I was able to recognise the overload yesterday, minimise its effects for the coming week, and avert a probable outburst.  It may well be that what I have to do is change the way I think and the way I structure my time., the commitments I take on and the pressures I put on myself.  As I have said before, many times on my blog, there is no point in forcing yourself to work, or to try to get more out of yourself once you are overloaded.  Perhaps what I need to do is pull back even more than I already have, let myself rest, and build up again slowly.  And the note that I would like to end on is that this is ok.  Overload is a very real thing, and if you have not experienced one then I don`t think you can ever really understand how it feels.  Add to that the issue of delayed overloads, and you can see how difficult it is for me to even go out once or twice, and the impact that this can have on me.  I feel like I need to change the way I do things, and try to understand the impact of my overloads more than I already do.  And even though the reasons for me having to do so are negative, the impact of doing so on my future will hopefully be positive.

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January Meltdowns …..

Christmas and New Year have been fun, but also quite stressful.  I think however old you get, or however many strategies you put in to place, this time of year will always be difficult if you are autistic.  The amount of change and transition, plus the sensory issues means that Christmas and New Year can`t be anything other than a difficult time.  This doesn’t mean it can’t be enjoyable as well.

For me, I finished my first semester at university, and then had the change, and transition of Christmas and New Year.  All of these things together meant that my behaviour, and mood was affected quite severely.  I began to have more meltdowns than normal, and these also increased in severity.  I don’t think that this is uncommon at all among autistic people.  In fact, I think you would struggle to find someone who doesn’t get like this after Christmas, or during Christmas.

Early January can actually be the most difficult time because at least during December there are the positives of Christmas and New Year, so the good comes with the bad.  But January can be a pretty miserable month for people anyway – everything goes back to normal.  While this can be a positive thing, it is also not the easiest thing to deal with for anybody, let alone somebody with autism.  From my point of view it is even stranger as I don’t actually start university again until early February.  All my assignments are handed in so it is as if I have transitioned to another stage – it`s kind of a holiday, but not really.  I am not complaining about getting so much time off, it is just a little bit odd as I was just getting used to university, and I am sure that in some way this must have contributed to what`s been going on for me.

December is a strange time of year for people with autism and their families.  It is very positive and there is a lot of fun to be had – I am not trying to take away from this at all – but I also think it is the most difficult time of year.  I have written about why this might be previously, and I am sure everybody reading this will know anyway from personal experience, but for me early January has always been a bit more difficult.  It is harder to find the positive edge in all the changes and transitions that are going on, but it is possible.  It may be the case that some people are excited to get back to their old routine; may be they want to see friends they`ve not seen for a while?  There could be all kinds of positives to the transition back to everyday life, but it can still feel overwhelming.

The other thing to remember is that while meltdowns are not good – and it`s always best to ward them off, or at least resolve them quickly if possible – just because they get worse in January doesn’t mean that they will stay at this level for the rest of the year.  Things pass, and calm down.

In order to make sure things aren’t too much of a problems in December and January it is important to plan far in advance.  I think last year, may be because I am older, or simply because we were so busy, we didn’t put anywhere near as much planning in to Christmas and New Year, and the transition back to everyday life as we normally do.  And my Mum and I have both felt the effect of this.  We created strategies and techniques to make this transition easier, but for some reason we didn’t put them in to place this year.  My Mum was diagnosed with autism in the build-up to Christmas, so obviously this had quite a big impact on her life, and mine.  But one positive to come from this is that going forward in to Christmas and New Year this year, we can look at not only how it might affect me, but how it might affect Mum.  We both obviously struggle with these things.

What I am trying to say in this blog isn’t anything particularly negative; I just think that it`s important to make the point that things such as the stress created by change don’t simply go away as people with autism get older. Strategies and techniques are not things simply to be used in childhood and then left, especially for things like Christmas which only comes around once a year.  There is so much time in-between each event that the techniques and strategies need to begin afresh every time.  Even though we didn’t take our own advice for the Christmas and New Year just gone, hopefully some people reading this will have done, and had a more peaceful Christmas and New Year holiday than we did.  I wrote lots of articles and blogs in the lead-up to Christmas offering advice and tips that we know work – and we will certainly be using them next Christmas and New Year J Paddy-Joe

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I have co-authored two autism books. Check them out J

http://www.jkp.com/uk/helping-children-with-autism-spectrum-conditions-through-everyday-transitions.html

http://www.jkp.com/uk/create-a-reward-plan-for-your-child-with-asperger-syndrome.html

Paddy-Joe Moran J