Tag Archives: family

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.

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?

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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


Going out and about with my Parents as an Autistic Adult

I am twenty one years old now, and I know that most people my age tend to spend their time with people of the same age.  They might be away at university and living with their friends, or they might just be hanging around with them, and going on nights out. Most people in their teens, and early twenties don’t spend a lot of time doing things with their Mum and Dad, but I do – as do a lot of other autistic people I know.  So why is this?  And is there anything wrong with this?

Well first of all no, there is nothing wrong with spending time with whomever you like. But why is it that autistic people often spend more time with their parents than non-autistic people?   Firstly autistic people can find it hard to socialize, and therefore making friends in the first place can be hard.  Their parents will often know, and understand more about their autism than any friends might, and therefore be more willing to plan trips out instead of trying to do them on the spur of the moment.  For myself I know that I don’t have to make an effort to talk if I don’t want to.  If I go out then the fact of being somewhere noisy and busy might be overwhelming for me, and in order to enjoy it I might just need to not talk, or not talk a lot.  If I was out with friends this might be hard, but my parents understand and don’t try and force things.  I know that I don’t have to try and fit in the as the people I am out with understand me, and know why I act the way I do.

I never feel embarrassed to be out with my parents, but I know some people with autism might.  More so if they look around, and see other people their own age out with friends, or girlfriends.  But this is the thing, there is no reason really why it’s not OK to go out with your family.  If someone wanted to go out, but found it hard to do so on their own and was faced with the choice between not going out, and going out with their Mum or Dad then it seems odd to me that they would pick not going out. Also going out and spending time with your family does not mean you don’t have friends.  I do have friends, but I don’t want to see them all the time.  I do go out with them occasionally, but most of the time I go out with my Mum or Dad.  For me there is nothing wrong with this; like I say it is often easier to plan for, and to do than going out with other people who might not understand my autism as much.

I spend time with my family because I know that I can be myself around them, and because I know they understand about my autism.  But also because I can think logically, and I know there is nothing wrong with going out and about with your parents no matter what your age.  I could go out and make more friends, and go out with them more often, but I don’t want to. I feel happy in the way I do things now, and I don’t think that if you’re an autistic adult who spends a lot of time with their family, or goes out with them a lot rather than people your own age, you need to feel like this is a bad thing.  Do whatever you feel most at ease with, and whatever allows you to have the best time when you are out.

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