Tag Archives: autism Asperger`s

Autism and issues with my routine ….

Last week I wrote a blog about my new routine and how it has been helping me get more done, and feel better about myself, and while that’s true it would be misleading to leave it at that, and not talk a bit about some of the things that can, and have gone wrong with it. These are things that have gone wrong this time, but could also go wrong with any routine; so they are not issues with the routine itself, instead they are things that happen that impact on if, and how I can stick to my routine.

Sometimes it`s hard to establish a routine: What I mean by this is that for me if you do something a few days a week it`s not really a weekly routine. So when I plan out what I will be doing on each day of the week (planning to do the same thing each day) and then have to say “ Well not on Wednesday because I have to go out, and not on Friday because I have to go out then too.” It feels like I am not taking the time to get myself set in a new routine. Of course life throws up things you need to do, and I would not be able to stick to the same plan every day of my life, but if I can`t even stick to it for the first week how am I meant to feel like it`s a daily routine? If I only do it a few days each week it`s hardly a routine. The best thing would have been to clear a week, and do my routine each day so that I was in the swing of it then start to change it as, and when it was needed to fit in the other things life throws up. This way I would have been set in my routine, and more able to get back to it if it had to be changed one day.

Missing one part of it can mess up the whole day: If I say I am going to be up at six, work out and start my work by eight, and in fact I do not get up till seven then that can throw my whole day off. Why? You might be asking. I am at home all day after all, so what if I do the same things just an hour or two later than I was planning? And it`s a good point – that would be the smart thing to do. But sometimes it is not as easy as all that. Often I will try to get back on track after something has not gone to plan, and just find myself unable to do so. Try as I might the days where things go wrong early on hardly ever end up going well. If I am going to make a routine work I need to stick to it fully. Something as small as getting up a bit late can throw me off track for the whole day. Perhaps planning to get up as early as I do is the issue? I like to be up early and enjoy working in the mornings, but if I do have the whole day to work with perhaps I am less likely to fail to get up if I plan to get up a bit later? Or perhaps I just need to make sure I get to bed at a better time so I am less tired in the mornings? Either way that issue can be dealt with, but the point is that anything that goes wrong can mess up the whole routine for any given day.

Not having a plan B: Sometimes things will happen that you just can`t control, for example I get hay fever and sometimes it`s pretty bad. Some days it`s normal; just a blocked nose and a bit of sneezing – nothing too bad. Nothing I cant work through. But every now and then I wake up and it`s bad; I am sneezing every few seconds, my head hurts, and I am sweating and burning up. I feel dizzy, and at times like this there is just no point trying to work. It does not happen often, and only ever lasts a day at a time, but when it does it messes up my plans. I spoke about how I need to plan my rest time too in my last blog, or I end up doing nothing, and this ties-in with that. If I find myself waking up unable to do my routine I am often unsure of what to do. Do I try and do it? Do I admit that I can`t and do something else? What else is there to do? If I had a plan B, a back-up plan to be used on days when I can`t stick to my routine this would not be an issue. The plan could be something as simple as “Watch a few episodes of a certain TV show”. That might not sound like much, but when I am overloaded or feeling the impact of a sudden change of routine it`s very hard for me to find something to do. This is in part due to the fact that I don’t want to do anything, and just can`t get exited about doing things when I feel that way. Therefore, if I were to think about watching a T.V. show on the day I would not want to do it, but if it was pre-planned “If I am unable to do my routine I will watch this show” the chances of me forcing myself to do it (and enjoying it) are much higher. This cuts down on the risk of me just sitting around feeling overloaded after a change to my routine.

Having too much free time: Free time is good, and for me it is needed; I don’t like working to a routine where every minute of the day is planned beforehand (some people do, and it`s just a case of what works for you). But I found that I was working until 12 and then the next thing I had planned was to read at nine at night. This meant I had a lot of time to fill. It`s not to say I did not spend any of that time well: I got films watched, I read and I did work around the house, but I do think perhaps giving myself so much free time in the end was not helpful. I could have half that time, and still have a lot of time to relax and do whatever I want to do. Again how much time is planned, and how much is set in the routine will depend on the person, so to a point I am just trying things out to find out what works for me.

So overall I would say my new routine is a good one; it has helped me somewhat, and has definitely made me feel better on the days when it has worked, but it`s far from perfect yet. But that’s OK, as I said it`s about trying things out, seeing what works, what helps and what makes things worse, and coming up with a plan that helps me to get more done and feel better. That takes time and there might be a whole load more things to learn before we get there, but as long as we get there in the end that’s the main thing. And even in the mean-time having some kind of routine, some basic plan for at least parts of my day is helping me do more than I would if I had nothing at all. Things might not have worked out right away, but they hardly ever do and a good routine is something that’s worth taking the time to get right.

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?

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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

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Autism, and how routine is helping my low mood.

Lately I have been finding it hard to get things done. I have had low energy and a low mood, but it’s been hard to pinpoint just what the cause of this might be. I have tried my best to get on with things, but a lot of days I just end up falling asleep in the afternoon, and not even being able to decide which film to watch. Even the things I enjoy doing like watching films and reading have suffered. I was finding myself unsure of what to do most days, even though I had a lot of stuff I could do, or wanted to do I could not decide what I should be doing, and that made everything feel much more overwhelming than it really was. This meant that whole days were going by where I did almost nothing, and the things I needed/wanted to do just built up and up.

After talking to my Mum about this she offered to help me come up with a new routine to try and put some more structure in to my day. I did used to have a routine, but due to various family issues it has become disrupted.

We started the routine on Thursday night and I found it worked. On Thursday and Friday I was much more productive, and also found time to get the things I enjoy done. Knowing what I was doing, when, and for how long helped me. Having it written down and being able to tick off each thing as I did it was also a help as it allowed me to see what I had coming up next, and become used to the routine more quickly.

I am sure that I don’t need to go in to how important routine can be for autistic people as that has been talked about so much. As a child I worked on routines all the time. I can recall how hard it was when there was even a slight change to one. But I have to admit it did surprise me how much I still need a strict routine in my life.

Even as an adult if I don’t plan out what I am going to do I get nothing done. Let me give you an example that will show just how important a routine can be, and what a difference it can make.

On the first day of my new routine I was up at six, I did a work-out, showered, sat down and worked till lunch time. After lunch I watched a film, did some more work, and then spent the evening reading. It might not sound like a lot, but I had spent weeks worrying about how to fit all those things in to one day, but not actually doing any of them – that is despite the fact I am at home all day. But just knowing when I was going to do each thing and having it planned out for me meant I got it all done with ease. Not only did I get stuff done, but I ended the day feeling less tired and feeling better about myself.

Then let’s look at the weekend. The one fault with our new plan is that it does not cover the weekend. So I know what you might be thinking – why could you not just get up and do it anyway? Well I don’t know. But I found Saturday just drifting away. The truth is I am not even sure what I did – and I don’t mean that in a relaxed sense. I did not read, did not watch anything or do anything that I can think of. The day just seemed to pass, and then be over. Sunday was a bit better, but by that time it had become clear to both me and my Mum that just having the weekend as free time was not going to cut it. We needed to make at least a basic plan.

Because that’s the thing a lot of people don’t get about autism and planning; I don’t just need to plan when and how I work, I need to plan when and how I relax too. I can have all the free time in the world, but unless I have some structure and a plan nothing, or next to nothing, will get done. When I say I did nothing on Saturday I mean it; I did not have fun, or relax, I just drifted round unsure of what to do. The less structure there is the worse I feel, and the more worn-out I get. But just by putting a good routine in place and sticking to it all that can change. This morning I stuck to my weekly routine: I got up, worked out, went to the field with the dogs and wrote this blog by 09:17 in the morning.

The past few days have been a reminder to me how key routine is, and how despite not being a child any more having a good routine and structure to my day is just as important, and useful now as it ever was.

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?

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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

Why research in to autism needs to be led by autistic people.

In my last blog I talked about an article put out in the Daily Mail linking autism to radicalisation. (  https://askpergers.wordpress.com/2017/06/29/are-autistic-people-at-a-greater-risk-of-being-radicalised-my-response/ )I explained why the ideas put forward in this article are wrong, and why I think the idea behind the article itself is dangerous. I am far from the only autistic person to take issue with the article; in fact I have yet to come across an autistic person who does think positively about it. One of the issues that came up the most when I was talking to other autistic people on twitter about this article, is the lack of autistic-led research around autism.

More often than not if someone is planning a research project around autism, wants to decide which projects will get the most funding, or wants to talk to the press about autism research, that person is not autistic. Often autistic people are not even consulted in these matters. If you look at the autism and radicalstion article the team behind that admitted on twitter that they had not worked with autistic people on the idea before they published it in the press. The article came out, and met with a strong reaction from the autistic community that you imagine would have been wholley predictable had the authors just talked to a few autistic people before-hand. In fact if they had spoken to autistic people they might have decided that the research they were planning to do would not be the most helpful – or at least focusing it on terrorism would not be. Perhaps it would have ended up being a wider piece of research looking at how autistic people can often fall victim to things like so called `mate crime` where they trust someone to the point of thinking they are still friends even after that person has hurt them, or tried to push them in to doing something they know to be wrong. This is something that can impact on a growing number of autistic people, and knowing more about it, and working with the police to help them understand, might genuinely help some autistic people. But as it was we got a poorly researched article that did little more than drum up fear around an issue autistic people had not even asked anyone to look in to. I am not trying to say that non-autistic people can`t do good work around autism – they can. But if you really want to know what you`re talking about, and be taken seriously then at some point you have to talk to the real experts – autistic people.

I am not alone in thinking that if professionals and researchers would take more time to listen to what autistic people are saying, and work with us instead of trying to do what they think is best, it would be better for all involved. We see a lot of studies coming out saying things like “Making eye contact can be painful for autistic people”, to which most autistic people reply “Well yes. We have been saying this for years.”

There is a sense that autistic people can say something for years, and it not be taken seriously until a non-autistic professional says it too. As if we can’t really be trusted to know or understand how our own minds work. And at the same time if a piece of research comes out that we don’t agree with we are meant to just take it at face-value, and accept things about ourselves that we know not to be true. While research by non-autsitic people does play a part in helping us all to understand autism – and I would not want to downplay that, or make it sound as if only autistic people should be working on understanding more about autism – I do think autistic people are well within our rights to reject some findings, or directions of research. We can look back to papers published by highly respected researchers in the 1940s and 1950s that blamed `cold and unfeeling Mothers` for causing their children’s autism, and see that at times it would be silly to accept something just because it’s written in a book by a so-called `expert.`

When things like this happen it often takes professionals years to admit they got it wrong, and all this does is deepen the divide between autistic people and the non-autistic professionals, leading to a situation where time and money is being directed at arguing a case that autistic people already know is silly, just to avoid having to back down. For a more recent example of this look at how the professional world has reacted to the idea of females being autistic. For years they said females could not be, but now – even after countless women and girls have been diagnosed – some (not all) professionals are still clinging to the idea that these females must somehow be super-manly on the inside, or else how could they be autistic? Instead of just admitting they got it wrong, and trying to look at why that might be, they still cling to the idea that autism is a male thing, even when the autistic person is female. Understandably this approach does not earn those professionals a lot of respect in the autistic community

Autism is a way of thinking, a way of feeling and a way of seeing the world, and the truth is autistic people are the real experts. I am not trying to say that non-autistic people don’t have a part to play in understanding autism, and thinking of ways to help autistic people with some of the things that we do find more challenging, but I am saying this needs to be done hand-in-hand with autistic people.

Perhaps if all research around autism were to be led by autistic people – or at least take the time to talk to us and find out what we want, and how we feel about things – there would be less conflict between the autism community and professionals. And autistic people might start to feel that our voices are being listened to. Much more could be achieved if autistic people and professionals were able to work with each other instead of clashing. But for that to happen autistic people need to be given a greater role in leading research, and studies around autism.

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?

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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

Making my first phone call.

A few days ago I made a phone call. I put in the number, waited for someone to pick up, told them who I was and what I wanted, answered their questions, was passed on to someone else,waited on hold, sorted the issue out, said goodbye and hung up the phone. I know what some of you will be thinking “So what? That’s a phone call. People make them all the time. I don’t see the big deal!”. But because of the nature of this blog I know there are some of you who will be thinking something more along the lines of “Oh God that sounds awful! I hate doing that/the idea of doing that!” Due to my autism I am firmly in the second camp, and that’s why I wanted to blog about making a phone call, because – as I only realised after it was all over with – it’s the first phone call of that kind I have ever made.

I have called my family on a couple of occasions, although I don’t even like doing that, or talking to someone on the phone when they call me. It’s hard for me to put my finger on quite why I find talking on the phone so hard (even harder than talking to someone face-to-face I mean) Perhaps it’s because it is so hard to tell when I should be talking as I have no visual clues; I can’t see who I am talking to – it’s just a voice with no face attached to it. Also, when you phone a call centre the background is often noisy, and while some people might not even notice this, if you’re autistic it’s hard to filter out that background noise. And there is the issue of anticipation; if you know you have to make a phone call the anxiety and nervousness can build all day. But you have to put an end to that; you have to be the one to pick up the phone and make the call. But you also have the power to put it off which means that you can fall in to a cycle of putting it off as it’s so stressful which means you wait longer, which means you grow more stressed. The stress and anxiety of knowing you have to make a phone call can be huge. Your chest can go tight and you can start to turn over and over in your head what you might say, and what the person on the other end of the line will say back to you. And sometimes this will help to calm you, but other times it will just get you more and more worked up to the point of panic. To then have to pick up the phone, make the call, and deal with whatever it is you are calling about can be a massive task.

What seems so small, and day-to-day to some people can be a skill that it takes a life time to master (or get to grips with but not quite master in most cases) for autistic people. I am twenty two now, and as I say I have only just got to the point of making a phone call for myself. However, just because I made one phone call does not mean that I would be able to make another, or even that I would feel confident enough to call the same people back about the same issue if it were to happen again. But even if I am able to call them again, and call other people up and talk to them, that would not mean there would be no impact. My Mum (who is also autistic) has been making phone calls all her life, and can talk on the phone for three or four hours when sorting out a computer related issue, still gets all the same worry and stress that I do from the idea of using the phone. She is able to do it yes, but it still leaves her feeling worn-out, and takes a toll on her.

So I am aware that there might never be a time when I am able to use the phone with ease and free from stress, I might always get a tight chest and a sense of panic at the idea of having to ring someone up and talk to them, and even as an old man I might still do all I can to avoid talking on the phone. But now that I have made a phone call from beginning to end I do feel a certain sense of accomplishment. I know that for most people this is no big thing, but up until a few days ago it was something I had never been able to do. And I am glad that to a degree I feel I have at least somewhat got the hang of a skill that has eluded me for years. As I say, I might not be able to use that skill again next week or in the foreseeable future, but the fact that I have been able to use it even once is good in itself.

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

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

Why are we still hearing that more Males than Females are Autistic?

Women and autism has long been a controversial topic. For years many women were diagnosed as schizophrenic, depressed or just ignored instead of being given a diagnosis of autism. But now a lot of these women are taking matters in to their own hands, and forcing the world to look at autistic women and girls in a new light. You only have to spend five minutes on Twitter looking through their stories to see the common thread. They had a child/friend/husband with autism, or just read up on it, and felt that perhaps they were autistic, and then went to a professional to have that confirmed, and were either flat-out refused, or were told that they could not be autistic because, they had friends, children or could talk to the Dr/psychologist, and sent away again. A few years down the line the strain of living with undiagnosed autism, while trying to act and live like a non-autistic person, becomes too much, and they have an autistic crash. There are a lot of cases of late diagnoses or self-diagnosis, and as I say most of the stories follow a similar path. It should by now be clear to us that women and girls are autistic too, and that we need to take notice of this, and make sure that they can get the acknowledgement they need earlier in life. But there is one statement that is still thrown around far too much in my view, and perhaps it is one of the things holding us back.

`There are far more autistic males than females`.

Think about that for a second. It’s something I can recall hearing years ago, before anyone worked out a female profile for autism, and before the boom in autistic women coming out, and making the professionals sit up and take notice. But why do I still see it so much today? We know now that autism does not just present itself in one way. Now I don’t believe in a female/male profile per-say, as I know some men who would fit the so-called female profile, who therefore went undiagnosed themselves for years. That’s not to say that the female profile has not been a huge help and that a lot of women do not fit in to it, it’s just to say that we want to keep learning more and changing our ideas, instead of getting stuck in a whole new ridged way of thinking about things. There are a lot of autistic women out there now who would never have been diagnosed without the `female profile` though, and what it does show us is how blinkered professionals have been when it comes to giving out diagnoses of autism. When you think that we have known about autism for less than one hundred years, it seems strange that we should set such clear, unmoving statements as `There are far more autistic males than females. `

Let’s look at it this way – we hear some people in the media talk about an `autism epidemic` and about how `there was no such thing as autism in the past. ` We know that this is a silly argument. We found out what autism is, and the more we learn about it the more we can notice it in people. Therefore more people are being diagnosed as autistic. It’s not hard to work out.  And I think the same goes for the statement about more men being autistic than women, or boys than girls. We might have more males on the books diagnosed as autistic than females, but I would be willing to bet that this is only down to the fact that most of the women or girls who are diagnosed have to fight for years to get that diagnoses. It’s as if the system said “Women and girls cannot be autistic.” and then made sure it was so, and that fact would remain true by refusing to diagnose them for years. When we look at the amount of women who have been forced to the point of having an autistic crash, and losing their jobs, as well as suffering from related mental health issues due to this, it is clear that something must change.

Perhaps the first step in this would be to stop saying that more males are autistic than females, and just stop worrying about those numbers. Assess everyone on their own, and not as a male or female, and see if they are autistic.  Don’t let their gender play a part in your thinking.  We know that autism can present in different ways: sometimes in outbursts, sometimes in being quiet, sometimes in being unable to understand emotions, sometimes in being too empathetic to others to the point of neglecting yourself, and these points, along with other things, are what we should think of when we think of autism. Not one set idea that only applies to one small section of society.

You can find my new book: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34253.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

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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

How Sensory Overload Impacts on Autistic People Part two – The Impact on my Body.

In my last blog I talked a bit about how doing events/talks, and going to do any kind of work can have a negative impact on my mind. I explained how the build-up of anxiety, added to the lack of time to rest after an event, can leave me unable to think clearly, and how it can take me weeks to even be able to pick what film to watch and to rest, let alone be able to work or go out again. But the impact of a stress and anxiety build-up and overload is not just mental, and there is also a physical side to it. I want to use this blog to speak about that, and explain what happens and how bad the physical effects of stress, and anxiety can be.

As I said in my last blog I did three events in November, all of which included talking to an audience, one-on-one chats, and busy rooms. There were build-ups of stress beforehand, and not much time to recover afterwards. But before I talk too much about these events and their impact I would like to go back, and talk about my book launch. On the night of the launch itself I was fine. I felt good and fully expected to feel fine the next day as well. And when I woke up I did feel fine, but as the day went on I started to feel worse and worse. By around eight at night my stomach felt as if it was being pulled and twisted from the inside. It felt as if it were piled with stones, and I could not even stay in one place for more than a few seconds before I needed to move to try and stop the pain building up too much. I knew full-well that I was going to be sick, and sure enough I was. In fact I was up till after three in the morning throwing up. The next day I was fine, I ate plenty and did not feel ill in the least. At the time I knew, or at least thought, that it must be some kind of physical release of all the stress that had built up before and during the event. As I said in my last blog I was not aware of feeling stressed before events, but I guess it must have been there inside – impacting on me whether I felt it or not.

I did not feel anything of the sort after the first event of last month, or the second, but the morning after the third event there it was again. That feeling of carrying around a pile of bricks in my gut. Pain and discomfort, but more than that. There was a sense of hopelessness. I knew then that the feeling was without any doubt due to the stress of the work I had been doing. It was a direct result of me going out and selling my books and doing talks. It’s hard to explain my feelings, perhaps pain most of all, to people in a way that they can understand, so you might think I am making a big deal out of a bit of stomach ache. But I have been sick and had a bad stomach plenty of times in the past, and I can tell you that this stress induced stomach pain was much, much worse than any I have ever had before.

There was a point, when I was bent over in pain the morning after the third event, where I began to wonder if I would be able to keep on doing that kind of work. Would I be able to commit to planning for an event knowing how I would be left feeling the day after? And more than that, was it worth it? I was in a huge amount of pain and I felt miserable. I should point out that despite what you might think I don’t often complain of pain. For me to react to pain at all it has to get to a point that most others would find hard to cope with. More than once in my life I have gone to see a doctor with an infection in my foot, or ear after weeks of saying only that “It’s a bit sore” to be told that it’s one of the worst they have seen, and they are shocked that I could even stand the pain of putting my shoe on, and walking in to the building. The point being that when pain is bad enough to make me feel miserable you know it must be bad.   So I have to admit I spent that morning feeling sorry for myself. But as time passed the pain began to grow less and less. By that afternoon I was able to relax and watch a film.

I realised after this that I would have to plan events better, and try to do something to stop the onset of pain like this again. I am sure that it is due to a build-up of stress. The stress builds up before the events without me feeling it, and once they are over and done with I feel the full force of the stress in a physical as well as mental form.

I know now that I need to make plans before events to try and stop this from happening, but I don’t know what will work, and the only way to find out will be to test things out. And that means that I might have to try a few things that do not work, and find myself in pain once again.

Because pain, or at least physical discomfort, is nothing new to me – I would say I feel uncomfortable much more often than I feel comfortable, at least when I am outside anyway – If I know I am going out, even if it’s to do something I enjoy, I will have pain in my gut, feel hot and sweaty, and have a tight chest sometimes for hours. And it’s not something that I ever get used to. When I used to go to Judo I would feel like that for an hour or so before going out, then after a few months of going, when most people would be getting used to it, I would start feeling that way in the afternoons, then in the mornings, and in the end I felt that way from the morning of the day before I was due to go out! In my head I wanted to go, I knew I would enjoy it, and as soon as I got there and got going I did enjoy it. But still I could spend up to twenty four hours in physical discomfort just because I was due to go out.  And for this reason I no longer go to judo.

So I don’t know what will work to rid myself of the pain and discomfort that stress, anxiety and sensory overload, can cause, but I want to do all I can to deal with this issue so that I can get out there and do my talks, and sell my book without feeling again like it might not be worth it.

Do any of you suffer from the physical symptoms of stress and anxiety?  Or the physical or emotional impact of sensory overload? If so do you have any tips or hints as to how to deal with them?

You can find my new book: 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

 

AUTISM: when you are so overloaded that you can`t even do your favourite thing …

In the past month I have done three talks about my book. One at the launch for the book, and two more for other events where I talked about my book, and autism. Unlike a lot of people I enjoy doing public speaking, and I had fun doing the talks and selling my books afterwards.  I knew even as I was doing them that it would take a lot of out me. But I have to admit I underestimated quite how long it would take me to recover. I had thought that a few days of rest might be OK, and that I could be back to normal after that, but the truth is it’s taken me about two weeks to feel like I can get back to any kind of normal routine. So why is this?  And what kind of impact has it had on me?

Let me start by saying this. No one who is not autistic can understand sensory and emotional overload. People try, and they do mean well, but saying things like “I will be pretty tired too.” Or “You will just need to crash out in front of the telly tonight.” just show how little they do understand. When you have an overload sometimes you’re so worn out you can’t even rest. You can’t watch anything, you can’t read and you can’t even make a basic decision – sometimes for days on end. I love watching films, and when I can I watch a film a day. So when I can’t watch films that is a sign that I am overloaded, and need to give up on the idea of doing anything.

This was taken to something of an extreme with my last overload. Each year since I was around fourteen I have been to a horror film festival. For the first few years I only went to see a few films, but for the last five years or so I have gone to watch every film over the four days of the festival. It’s one of the few things in the year that I do look forward to doing, and one of the few time I can bring myself to go out four days on the run. Even though I always have a good time I always feel overloaded by the end, and need at least a week to relax, and do nothing after having been out and about so much.

Normally I would make sure I was not going out the week before the festival starts, but this year I decided to go and do a talk just two days before it was meant to start. I can’t say for sure why I thought this would be a good idea. I think I just got so caught up in the fun of doing talks, and selling books that I did not stop to think too much about the after-effect. But then on the day the festival was due to start the last thing I wanted to do was to go out. All I wanted to do was stay inside and do nothing. But I forced myself to go out for the first night, and watched three good films. Even though I enjoyed the films, I knew when I got home that I was feeling much more overloaded than I normally would at this point in the festival. And when I got up the next morning I knew that going back out would not be a good idea. I don’t want to make things sound over dramatic, and it’s not the worst thing in the world by any means – I missed watching a few films, that’s all. But the point is that I was unable to do something that I enjoy doing, and something that I actively make sure I do each year.

And this is where people not understanding overload comes in. How to explain to someone something you can’t fully understand, or find the words for yourself? How do you explain that going out and doing something you enjoy, something you would even find fun when you`re there, would in fact be bad for you?

When you`re  overloaded, or at least when I am (I can’t speak for everyone with autism) it’s a case of not being able to do anything, and almost drifting around all day just waiting for time to pass so that the overload will fade, and I can get back on with my life. It might take me all day just to decide to watch a film then another hour to pick one to put on. And the likelihood is even if I did I would not be able to get in to it.  It’s as if your mind stops working as it should; you can’t think clearly, or even decide anything for yourself.  And as I say this can last for up to a week normally.

On top of that I felt angry at myself for not planning as I should have done. I ended up not going to the festival and staying at home over the weekend instead. This was the right thing to do, and I am glad that I decided to do it, but I still feel as if I should have known better than to end up in that situation. Doing a talk and then dealing with all the one-on-one interactions that come with selling books took a lot out of me. More than I thought it would do.  And hopefully I can use the mistakes I made to learn more about myself, overload, and how to plan my work in future.

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

My new book and why I wrote it.

I have a new book coming out on the twenty first of this month. It is called Communicating better with People on the Autism Spectrum – 35 things you need to know. This is a pretty self-explanatory title. In the book I list 35 things that I think it is essential for autism professionals to know when they are communicating with autistic people. I wanted to talk a little bit in this blog about where the idea came from, and why I thought it was important to write.

Throughout my life I have had quite a few dealings with professionals. Some of these have been great. They have been essential even to helping me overcome problems, and get the best out of my autism. But increasingly, as I have grown older, I have become more and more frustrated when meeting with so- called autism professionals. I have been faced with a baffling lack of knowledge, concerning even the most basic aspects of autism. I have been in meetings that have run for almost three hours, and over-all been left with a feeling of frustration, disappointment and confusion at the conclusion of these meetings. As I could feel myself getting increasingly angry about these issues I decided to write something to channel that anger and frustration in a way that might be constructive, so I wrote an article for the Guardian to put out in a health and social care blog. The idea being that professionals would read this article and realise some of the things that they could do, or could avoid doing, in order to make life better for people with autism. I wrote two related articles which did well, and received several thousand shares. It also led to me being contacted by my publisher via twitter with a request to write a book that would be an expansion of the article. I was more than happy to do so because to tell the truth I had a lot more that I felt I needed to say on the subject.

When I sat down to write the book I didn’t want to write something that was merely going to criticise professionals, and tell them how bad they are at their jobs. I wanted to write something that could be read by people who are good at what they do, but who understand that as people they may not think of everything, and there is always something to learn; professionals with enough experience to know that they can’t look at things with an autistic mind, and that it is OK to take advice from someone who can. But more than this I wanted to write something that if it got in to the right hands would mean that less autistic people would be left with those feelings of anger,confusion and frustration that I experienced after some of my more unsuccessful meetings with professionals. Because that is the thing, the professional who presided over the three hour meeting for example, was not a bad person. They were newly qualified and probably didn’t understand that I had refused a break an hour in as I assumed it would be a ninety minute meeting as originally planned. Unfortunately the meeting ran over by a significant amount of time. I wasn’t offered another break and there was an incredibly noisy event going on just outside the office in which my meeting was taking place. It was one of the hottest days of the year and I wasn’t offered a drink as the meeting progressed. What makes this even worse is that my Mum had contacted them before we went and requested that I be seen by someone with a good understanding of autism. The meeting itself was shambolic. But my point is that this wasn’t due to the professional themself being vindictive or nasty, it was due to them not understanding. They made mistakes the same as any newly qualified professional would do. It is just that in this kind of job when you make a mistake it is the autistic person who ends up suffering.

So in short, I decided to write this book to help professionals and autistic people. I would like to think that even the best professional can get something from the book, and this might in some way help other autistic people in the future.

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

Light it up Blue – but for who?

Why are we asked to Light it up Blue on Autism Awareness day?  It’s something not a lot of people take the time to think about. All around the world buildings are lit up blue, but many people don’t know what the point is. They know it has something to do with making people aware of autism so they assume it’s a good thing, and think no more about it. So why are we asked to Light it up Blue during Autism Awareness month?  And is it a good thing?

The idea behind Light it up Blue comes from the organisation Autism Speaks, and that’s something I will address below. First of all why blue? Well according to the co-founder of Autism Speaks, Suzanne Wright, it’s because four times as many boys as girls are autistic. Now putting aside any feelings I might have about Autism Speaks for a moment, let’s say that they created Light it up Blue with the best of intentions.  Even if they did we have moved on from the idea that autism is something that only, or even mostly impacts on males. I get angry now when I hear people talking about how few girls have autism.  What I say is that only a small amount of women who are autistic have been diagnosed.  It’s not about male or female autism.  It’s about how that autism is shown, or how well it`s hidden i.e. coping strategies.  My view, and the view of an increasing number of autism experts is that it is likely just as many females have autism as males. There is nothing wrong with women using the colour blue, it’s just a colour after all, but if the idea of the movement comes from something we now know not to be true, then whatever you think about Autism Speaks you might feel the idea is a bit outdated.

But what about Autism Speaks themselves? Well as I am sure many of you know there is not a lot of love for them among most autistic people. The feeling is that while they do raise awareness of autism, they do so in a negative way. They spread a feeling of fear, and the idea that autism is an epidemic, and something that needs to be fixed. When you watch their videos they only serve to reinforce this sense of autism being deeply negative. It is talked about in the same breath as cancer or AIDS. I feel the same way as a lot of other autistic people; awareness is a good thing as long as it is making people aware of the truth. Yes autism can be hard, and it makes my life harder than it might otherwise be, every day of my life.  But it is not a wholly bad thing, nor are autistic people broken, or in any way less than anyone else. It`s fine to tell the truth about the parts of autism you find hard, but to say that autism itself is bad, and that everyone who is autistic is suffering, and needs a cure is not OK.  I don’t want to turn this in to a blog about Autism Speaks, but it’s worth taking the time to look in to why a lot of autistic people don’t feel Autism Speaks is speaking for them.

The issue for me is this, that most people who Light it up Blue don’t think about any of the things I have just talked about.  All they want is to do something good, something that will help someone in their family, or other autistic people. So I don’t want anyone to think I am having a go at them, or that I will look down on them if they do Light it up Blue! The point of this blog is this – try and think a bit more about why something is being done. What the meaning behind it is, and if that is the best way to help autistic people. I am not saying I have all the answers, but if a lot of autistic people themselves have an issue with something that is meant to benefit them, then it might be worth thinking of something new. Without all the facts and figures I can’t comment on how much an awareness day/month, or any one campaign helps the day to day lives of autistic people. But what do you think? Is it good that the most prominent thing on autism awareness day is run by a charity that a huge number of autistic people don’t like at all?

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