Monthly Archives: July 2016

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

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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.

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

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

“You don’t look autistic …” And why Autistic People hate hearing this so much.

If you spend any amount of time on the online autism community then I am sure you will know how much people with autism hate being told they don’t look autistic. But what you might not know is just why saying this is so offensive to many autistic people, and to the parents of autistic children.

Let’s have a look at all the steps that go in to making this one of the worst things you can say to someone with autism.

  • It assumes autism has a look: Kind of the most obvious point; by saying someone does not look like they have autism you are stating that some people do look like they have autism. Therefore, in turn saying that you can spot autism just by looking at someone.
  • Dividing people: But even though you are implying autism has a look, and is something that can be spotted at a glance, you don’t think the person you are talking to looks autistic. So they can’t be autistic in the same way as those other autistics, not like the ones who look You might not mean this, but that is what it sounds like.
  • Normal:  When people say “You don’t look autistic” they most often mean it as a good thing. The idea being that they are telling you that you look normal, so to speak. But think about this – they are saying that because you don’t look like you have autism you look like someone without autism, someone in their eyes who is normal. But you still have autism. So they are pretty much saying “Wow you look so normal, for someone who is not normal.”
  • Better/less: If you are told you do not look autistic, and you understand that someone is trying to compliment you by saying this, think about what that compliment means.  As I said it means they think you look “Normal”. As if you were `less autistic` than someone else. Now what this does is firstly to play down how your autism might impact on you, but also to put a whole mass of unknown autistic people below you in their eyes.  As if you look normal, you pass for not being autistic, and somehow that makes you better than people who they can tell do have autism.
  • Identity: Some people like the idea of being able to hide their autism from the outside world.  And yes I can see how it might help, in terms of getting a job and such, but at the same time there are other people who see their autism as integral to what makes them who they are.  To be told that they don’t look autistic can be very upsetting for that reason alone.

 

So those are a few of the things that I think can be taken from the statement “You don’t look autistic.”  Am I being over-the-top, and reading too much in to it?  Well, No.  Autism does not have a look.  You can’t tell just from seeing someone if they are autistic or not. So to say to them “You don’t look autistic.” is at best silly.  And at worse offensive.  If you have said it at any point don’t worry, this is not meant to call you out, and make you feel bad.  It’s just meant to make you think a bit more about what you say.  We all say silly things from time to time, but the key thing is to listen to people when they explain why said things are offensive or rude, and to learn.  Next time, when someone tells you they are autistic just think for a second before you answer them, and try to avoid giving offence.

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

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