Tag Archives: plan

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/

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Create a Reward Plan for your Child with Asperger Syndrome


Even though I talk about how positive autism can be a lot of the time, it would be silly to try to tell people that it is a wholly positive experience.  There can be a lot of negatives that go along with it, and I am sure if you are reading this blog you know that for yourself.

For me, when I was younger, one of the biggest negatives was the frequent meltdowns I used to have; shouting and being aggressive.  I have spoken in the past about how distressing this was for everybody involved.  Because most of the time this was directed at my Mum, she would feel bad, and I would feel guilty.  It wasn’t until after I was diagnosed with autism, aged nearly nine, that we were able to start doing anything that really had any impact on these outbursts.

 My Mum devised something she called the Reward Plan.  I`m sure you all think you know what Reward Plans are, but this one is different.  First of all, even though my Mum created it, she did it with my input, and kept me informed of what she was doing the whole way through, so that I fully understood, and was comfortable with the plan when we started using it.

The main principle of the plan was to focus on positivity, and never punish or criticise what could seem like bad behaviour.  The reason for this being that we don’t see behaviour such as outbursts/meltdowns as being bad – it wasn’t as if I was choosing to have a meltdown – so to punish me for something I had no control over would have been useless, and counterproductive.

The idea was to give points for any positives that could be gained from a situation.  For example, `I calmed down more quickly after having an outburst – 5 points`   My Mum designed a chart with a dragon on because I really loved dragons at the time, and collected them.  It might seem strange, but within two weeks of implementing this programme my behaviour in general had greatly improved, and I had far fewer outbursts and meltdowns.  The same continues to be true to this day.  I can`t say that it will completely take away any of the negative behaviours that come with autism – I don’t think there is anything that can do that – and as autistic people don’t choose to have meltdowns these may continue as they have with me.  But for us the Reward Plan cut down the frequency and severity of my meltdowns, and made them manageable.

Without this plan, and the positive effect it had on us, I don’t know where I would be today.  This is why a few years ago we wrote our first book about the Reward Plan.  It wasn’t done with any attempt to make money – even though we do get a small amount from each sale – the main aim of the book was, and always will be, to try to help families who are struggling with their child`s meltdowns, to benefit from the same techniques that helped me.  I can`t promise you that the techniques contained within this book will solve all your problems, but I do think it would be well worth you at least trying them if you are struggling to cope with your child`s meltdowns/outbursts.



 Based on the incredibly fast-acting effect our Reward Plan had on my meltdowns, I would recommend it for anyone, and everyone to try.  Even though the books title is Create a Reward Plan for your Child with Asperger Syndrome, the techniques can be adapted for people of different ages – if the problem doesn’t stop when you reach adulthood, why should the solution?  It can also be used for people with Autism in general, and for conditions such as ADHD.

 In fact there is no reason it simply needs to be used just for outbursts and meltdowns; over the years it has helped me to become more independent and sociable, as well as encouraging me to try things I might normally never have tried.  My confidence and self-esteem has increased greatly since my Mum created our Reward Plan.  I am now more able to make decisions, try new things, and make and maintain friendships.

One important thing to add – our Reward Plan was never intended to make me less autistic – the whole point of the Reward lan was to help me to gain the skills I will need to get by in the neuro-typical world as best I can in order to keep me safe, but more importantly to help me to embrace my autism, and to get the best out of it – to deal with the negative aspect of having autism so I can focus on all the positive things about being autistic.

If you want to take a closer look at our Reward Plan book go to http://jkp.com/catalogue/book/9781843106227 where it can be viewed and purchased J