Tag Archives: aspergers

Why my anxiety levels rise when people come to do work in the house.

Over the past few weeks we have had to have quite a few jobs done around the house. As these are jobs we cant do ourselves this has meant having to have tradespeople around such as joiners,and electricians. You might think that having people in the house and the noise they make when working would be the worst part of this, and for some autistic people it might well be, but for myself – and I am sure for some other autistic people – the worst part by far is waiting for them to come. I don’t just mean waiting for a few hours for them to arrive on the day either. Let me explain what I mean.

In my mind when I make a plan it’s a set thing; if I have to be somewhere I want to know the day and the time I need to be there, and the chances are I will be early. If I can’t make it I will get in touch and give as much notice as I can. You might put that down to my autism and you may well be right, but I also think it’s just basic courtesy. If you are going around to someone’s house you should at least tell them when you plan to arrive! Yet this basic information is almost impossible to prise from most people who do come around; want someone to come around and do a basic job in the house? They will be with you some time early next week. Well what day is that? Monday, Tuesday at the latest? Unless they get busy with something else then it might be Wednesday. OK, and would that be morning or afternoon? Morning, unless they run late then, afternoon.

Ah, OK, cool, just let me put three days aside for a half hour job then. Due to my autism it is almost impossible for me to focus on doing anything if I know I have someone coming to the house. As strange as it might sound to non-autistic people on a day when I have workmen around even though I am doing nothing, and they are doing all the work just having them come around and do the job takes up all my energy for that day. The waiting in, the knowing I will have to have some level of social contact, the not knowing how long the work will go on for, the noise, the disruption of having people in my house and what that does to my routine. Having to set one day aside to deal with this is bad enough, but it must be done in order to get things done around the house. But if this goes on for three or four days as it will if people are not clear on when they are coming, then you can end up wasting half the week being sat round feeling anxious not knowing if someone is coming around or not!

I am not quite sure why people find it so hard to look at a diary and see what day they are free before making plans instead of putting aside big blocks of time where they may or may not come around if they feel like it. It means instead of the anxiety building up over one day, and then being able to get back in to the swing of my routine the next day, you end up having two or three days of build up and if you’re lucky then having someone come to do a job. Which brings me on to the next issue…..

If you commit to being somewhere at a set date and time and you can’t make it you have to get in touch and explain that right? I think we can all – autistic or not – agree on that. But if you just say you might be somewhere that seems to be some kind of get-out clause. If you said you might come around at six and you realise you can’t you don’t have to ring up and tell the people whose anxiety has been building up all day because you only said you might be there. Never mind the fact that they may well have changed plans for you, changed their routine, waited in and are going to be on edge for the evening in case you turn up. It takes a few seconds to send a text saying “Can’t make it, call tomorrow to rearrange.” And yet the amount of times someone has just not turned up without any form of contact is, for me at least, shocking. Again this is not just about the impact on my autism, though that can be huge. Waiting in all day unable to do anything only for the person not to turn up without any contact to let us know of this change of plans does add to my levels of stress and anxiety, but it also means the day ends with me knowing I have to do it all again. Not only do I have to do it all again, but when I do there will be even more anxiety because now who ever it is has a track-record of not turning up. So I will half expect them not to turn up again which just adds a whole new level to things. But as I say it’s not just that. Again it goes back to common place courtesy: make a plan, make it clear and then stick to it. If you can’t then have the decency to let who ever you made the plan with know.

And when I say make a plan I don’t mean text the night before and ask if you can come around and do a job. The answer will always be no. I need notice, not a few hours notice, but a few days notice at least. This should not be too hard to understand or to give. I do understand that for most non-autistic people this would not be as big a deal as it is for me, but still people have work or university; they do things with their lives’s so you would think that a few days notice would be important for most people. Again it comes back to the fact that making a real plan, showing that you will take the time to plan things out, and then stick to them is always better than doing things on the spur of the moment.

It is hard to get someone who is not autistic to fully understand how disruptive and stressful having someone come to the house to do jobs can be. The levels of anxiety and the change in routine make it very hard, but I honestly believe that if it were more clear and well arranged the stress would not be half what it is. If I knew someone was coming at seven on a Wednesday evening then yes it would still be hard to focus that day, yes I might still feel overloaded once they had gone, but at least it would then be over. A plan would have been made, I would have be able to make plans for that day knowing that work was going to be happening, and how that would make me feel and from the next morning I could be back to my routine.

But if I have to put aside two or three days in case someone comes around only for them not to come around, and then I have to go through the same act the next week just to get one small job done I can lose the best part of two weeks just for an hours work. As well as driving my stress levels up this makes it much harder to get the jobs done on the house that need doing. If it takes two weeks of stress to get one job done I want the next few weeks to catch up on work I missed due to the change in my routine, plus the last thing I want to think about is trying to make more plans to get jobs done. This means other jobs that need doing get left because I just can’t put up with another two or three weeks of messing around just to get someone to come round and do them.

I understand that not everyone knows about autism and even if they do they don’t know I am autistic, but again I think what I am saying should be true in most cases. No one wants to wait three days to find out if someone is coming only for them not to turn up, no one wants to be told someone will be there some time between ten and seven, and no one wants someone to cancel or change plans without notice. The difference is for most people it’s a minor irritation, but for myself and other autistic people it can be a massive disruption and cause of stress/anxiety; something that takes an already stressful event and makes it ten times harder than it needs to be. I can do work around dealing with the stress of knowing someone is coming, and I can try and get myself to a point where I can do other things instead of just wait. But it can’t all be me, at some point I need people to meet me half-way, and at least let me know what day it is I will have to prepare myself for!

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?

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

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There`s no excuse for using bleach as a `cure` for autism.

Once again there are stories in the news about parents making their autistic children drink bleach in a vain attempt to “cure” them of their autism. I don’t think I really have to say why this is so bad, or the harm that it can do. We all know you can’t “cure” autism, and I would hope we all know how bad drinking bleach can be. The so-called cures at best burn your insides and cause immense pain, and at worst put people’s lives at risk. As I say I should not have, in 2018, to be writing up an argument for why giving bleach to children is not a good idea. But it seems to keep coming up. Every few months or weeks there will be a new story about it in the news, or online. Someone else in the UK or USA has worked out they can make some money out of selling a “cure” for autism. So they make up a mythology around it – namely that autism is caused by parasites of the gut, and that drinking the cure will kill the parasites, and therefore cure the autism. Of course there is no truth to any of that.

The people who try and sell this just see a way to make money, and don’t care who they hurt as long as they get paid. There have always been people like this, and there always will be, it’s just a sad fact of life. People who will pray on others fears and exploit them for money, no matter the cost. What worries me more is why the level of fear is so high in the first place?

This is not meant to in anyway excuse the people selling the bleach, but the truth is that people are willing to buy it off them, and feed it to their children. OK they might not know what is in it, but lets take this point by point.

  1. We should all know by now that there is no cure for autism. That is just a fact. We see so- called “cures” all the time, and they range from diet to bleach. But if you have an autistic child you owe it to them, and to yourself to make sure you fully understand what autism is. It is not something that can be cured – this is not a statement about alternative medicine vs real medicine, it’s just a statement that whatever the “cure” it’s a lie. I don’t think it’s too much to hope that parents should understand and grasp this most basic of facts if their child has been diagnosed.

  2. I have seen more than a few comments along the lines of “ This is shocking, you can understand why the parents got so desperate, but it’s still shocking.” My reaction upon seeing comments like that is always the same “No, I can’t understand why someone would want to poison their child.” I am not trying to make out like autism is always a good thing, or that it can’t be hard at times. I could not even begin to count the days of my life that have been ruined by meltdowns, overloads and other autism-related stresses. Autism is never wholly good, it always comes with some bad parts that make life harder, and yes can make the lives of the parents of the autistic child harder too. Add to that the worry a lot of parents have about how the world will treat their child after they are gone, the knowledge of how cruel the world can be to anyone who is different/vulnerable, and the wish to spare their children from that, and we can see why some parents might feel anxious about their child’s autism. But again I say, even knowing all of that, I can not for one second imagine why someone would feel that slowly poisoning their child would help make things any better. I think sometimes there is a desire not to attack parents, and to even sympathise with them to a point, but there has to be a limit to that. I have seen the same kind of comments on stories where parents have killed their autistic children in premeditated and brutal murders “ Well it’s sad, but you can understand what drove them to it”. This has to stop. I don’t care how hard you think your life is, I don’t care how stressed-out you are, killing or hurting your children is beyond the pale in the eyes of any decent society, and it’s about time we stopped using being stressed-out with the child’s autism as a way to bring sympathy back to the perpetrator.

  3. There is still a fear of autism, that much is clear. Despite all the good work autistic people have tried to do over the years to convince others that our lives are worth living, and that we are not something to be feared, it’s clear that old-fashioned attitudes are still worryingly prevalent. To see that fear in people who have never had any contact with autistic people is worrying enough, but to see it in people who’s own children are autistic is the real worry. Have these parents not taken the time to read the books, articles and blogs written by autistic people that debunk pseudoscience, and talk about how autism is not something to be scared of? They must know their children are autistic, but it feels like they would rather talk about made-up cures on secret Facebook groups than face up to facts, and educate themselves. Ignorance, as we know, is a great breeding-ground for fear. Far from being bliss ignorance is like a fog through which we can only glimpse the shape of something we are dimly aware is out there, and of course when half-glimpsed through fog anything will look scary. But wilful ignorance of the kind where you choose to ignore decades of research in to autism and pretty much everything ever written on the subject by autistic people, and believe that feeding your child bleach will make everything OK is like being given a torch to illuminate a path through the fog, and deciding instead to hurl it away from you at one of the shapes you can’t quite make out.

You would be forgiven for thinking that the deeper we go in to the 21st century the more we as a society would reject pseudoscience, and outright lies about health. But that’s not true. This can be seen in the resurgence of the anti-vaccine movement as well as in the desire for wilful ignorance in regards to the use of bleach on autistic children. We should be living in a time where autism and autistic people are accepted and understood, and it’s true that we are more than ever before. But it’s also clear that those levels of acceptance and understanding are nowhere near as high as they need to be. There is still far too much fear out there, and sadly, despite the best efforts of autistic people, it does not look like this is going away anytime soon. While there are still parents out there who choose to shout down the voices of autistic people who dare to suggest that autism might not be the worst thing under the sun, while at the same time choosing to buy in to a scheme that is only going to hurt, and potentially even kill their child out of fear of something they choose not to understand, then there is still work to be done. I would love to live in a world where a story of parents forcing their autistic children to drink bleach is shocking, and not just repetitive. Because that’s what makes it even more scary, the fact that we have all heard this story before, and I know for a fact we will hear it again, and more than once before 2018 is over.

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?

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

The sensory impact of a cold.

I have talked in the past about how in the days before coming down with some kind of illness I can be prone to meltdowns, almost as if I am reacting to the illness before I even know I am ill. When I say illness this can apply to anything, even a simple cold like the one I woke up with this morning. But I have not had any meltdowns for some time now, and I felt fine in the days leading up to this, but that’s not what I wanted to talk about in this blog. As I say I don’t always have a meltdown before I come down with something, but having a meltdown or being stressed-out/ grumpy with those around me can be a sign I am coming down with something. But what I noticed this time that I have not thought too much about in the past, is how much worse my sensory issues tend to get when I have a cold.

I find it so much harder to be around others (I have spent most of today in my room) and I think this has quite a bit to do with the sensory impact of a cold. Most colds don’t come with any pain (if you are unlucky you might get a headache) but they do hit your senses. Take the one I have today – no pain at all to speak of, but a blocked nose, a fuzzy feeling in my ears, and a constant strange taste in my mouth. At times I find myself getting hot and starting to sweat, and at other times my eyes start to water. I have noticed today more than ever before how stressful those things can be. It feels as if I can only spend a few minutes around other people before I have had enough, and I start to snap at them, or just have to go and be on my own again. That’s not because of how bad I feel, as I say it is only a cold, in fact if I were in pain I know that I would cope much better. I have a high pain threshold and can keep quite calm when in pain. But I think the key thing about a cold is how it hits all your senses.

It’s hard to explain, but it’s as if my body is having such a hard time processing all this extra sensory input that I hardly have any space left for any more sensory input, such as people talking to me.

I tend to find that pain is much more easy to deal with; it might be bad but it tends to stay in one place, and it’s easier to cut off from the rest of my body. Even when I have been in the worst pain of my life I have been much more able to sit and talk with people, and process what they have to say to me than I am when I have a pretty normal cold. So it’s not just a case of me feeling sorry for myself. But when all your senses are working overtime, thrown off balance and struggling to keep up with what is going on it’s hard to have any space/ability left to cope with other day to day sensory inputs. This is something I have never thought much about before, but when I talked to my Mum about it she said that she often feels the same thing. Because I am autistic I do not process sensory input in a passive way, and therefore the more inputs I have to deal with the harder my mind has to work to process them all. Processing what someone is saying to me takes a lot more active engagement for me than it would for someone who was not autistic, and when I am thrown off balance by strange sensory input (such as feeling suddenly very hot, or having a blocked nose and the strange feelings that come with that) it seems to have very little energy left to engage with, and process anything else.

You could make the argument that if you feel ill, even if it’s only with a cold, then you are going to be more irritable and less able to focus anyway, but as I say this is something I have noticed specifically in relation to colds.

As soon as my nose starts to clear, and my ears no longer feel as fuzzy I can get on with much more normal stuff again and spend time around people, but when I am fully in the grip of a cold I can barely even be around others for a few minutes before I am overloaded, and need to get away from them. I find myself much more able to keep working through pain than I am to work with a cold, and overall colds are much more disruptive to me than just about anything else. I do think there is a link between the sensory effect of a cold on the body, and my lack of ability to deal with day to day sensory issues such as people talking to me when I have one.

I wonder if any of you have noticed the same thing? Does a common cold have more of an impact on you than feeling real pain would? And if so do you think that impact is due to the sensory impact of a cold?

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?

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

Writing aims for 2018.

Last year was a bad year for me writing-wise. I put up at least two blogs where I talked about what a strange year it was, and how little I had got done so I wont go over that too much here. I just want to write a bit about what my aims for 2018 are, and why it matters for me to get back in to my writing.

First of all blog-wise I want to put out at least one blog per week. I am already on track with that with this blog, and the one I have already posted this year. Of course keeping that up for a full year is a bigger task, but that’s why I want to write blogs in advance, and plan out when I am going to be putting them up instead of just writing them when ideas come in to my mind. It’s also why I am open to ideas relating to what you might want to see me write about on here this year. If you have any ideas feel free to comment below, or get in touch via Facebook or Twitter. Last year I did write a bit on why blogging was important to me, how it helps me get my ideas out there without having to worry about them meeting somebody else’s standards. And I do feel that is one of the great things about blogs; autistic people can put our ideas and advice out there for each other (and non- autistic people wishing to learn more) to read and learn from. Sometimes if I am having a hard day just coming a across a blog that puts in to words something I have been dealing with can be a huge help, and I know from comments left on my blogs that my writing can also have that effect. I enjoy putting up blogs, and I also like the fact that at times what I write can help other people.

When it comes to books that’s a bit more open. I know I would like to write at least one book relating to autism in some way in 2018, but I am not quite sure what that will be. There is a lot around that subject that interests me so it’s a case of working out what I feel able to talk about and what I want to talk about first, and getting something together. That being said I would also like to do more work on my non-autism related books this year – as some of you know I do write horror/crime books, and I would like to make sure I put the time in to edit the draft of the work I have already done, and write the first draft for another book.

That’s really it when it comes to writing goals for the year, but the main point underlying it all is I want to get back to enjoying writing, and thinking of myself as a writer. Being a writer should be the easiest thing in the world – all you have to do after all is sit down and type. I am not talking about getting to the stage of being a published author or even being a good writer to the point where other would enjoy your work, I am just talking about being a writer. If you write regularly and finish your projects (it does not count if you leave everything half way through!) then you’re a writer. Odd then that there are such a lot of people out there saying they wish they could be writers. Perhaps what they mean is they wish they could be published because as I say to be a writer all you have to do is decide to write, and get on with it. Sometimes it is easy to lose sight of that though, easy to drift off and leave weeks between spells of writing, to fall in to that trap of waiting for the right moment to write, and that’s when you stop thinking of yourself as a writer and start thinking of yourself as someone who would love to be able to write. I feel like 2017 was like that for me; I did not write anywhere near enough to call myself a writer last year, and I want 2018 to be different.

I do not normally care much for New Year’s resolutions, but there is something to be said for looking back on the past year and seeing if it was well spent. If not then when you turn to look at the next twelve months stretching ahead you have to think to yourself “How can I make sure when I am looking back on 2018 I am going to feel it was worth while?”

For me a year full of writing would be a huge step in the right direction in terms of what I want to go on to achieve in my life, and as I say when you bring it down to its most simple form nothing should be more easy to stick to than doing more writing.

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?

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

The transition in to January: Why it can be so hard and what can help with it.

I have written quite a bit about how hard Christmas and New Year can be for autistic people, but it’s also worth saying how hard January can be. December is full of change and we all know how hard that can be, but by the time you have started to get used to it, it all changes back again. What you eat, what time you go to bed, your routine, the decorations everything goes back to normal pretty quickly. Because it’s going back to normal it might not seem like as big a change, but it is, and it can in fact be even worse. At least with Christmas you get time off or nice food – the change might be hard, but for a lot of people it at least comes with positives. But January is an almost universally hated month to begin with; nothing much happens in it for most people, the fun of the holidays is over, and everything changes back to normal within a day or two.

For autistic people there is also the fact that January can be spent dealing with the build-up of sensory overload that can come with Christmas. It’s not uncommon for a meltdown to occur days, or even weeks after the event that trigged it. There have been times where I have become overloaded due to going out, but have seemed to be doing quite well for three or four days after only to have a meltdown the next week. In December you have a month full of change and things that can lead to a build-up of overload, and the knock-on effect of that can be felt well in to January.

So when you put those things together you have a month that can be pretty dull and grim anyway, starts with a big change all of its own, and is more than likely still being impacted by the events of December.

What can you do about this?

The first and most important thing is just to be aware of it. That might sound strange or not specific enough, but it is extremely easy to forget all about how hard January can be. December is over and that is the month that draws attention to itself; the changes are very clear, and it’s easy to see what impact they might have. But everything changes back so fast it’s easy to forget how long that impact can last, and also to forget that the change back to normal life is a huge change all on its own. Add that to the fact that the year is literally changing, and you can see why you should be aware of how hard January can be, but also why it often gets forgotten about. Just being aware of the issues that might arise will help. If you’re feeling overloaded or stressed-out remember why that might be, and perhaps be on the look-out for signs of a meltdown, or just keep in mind that just because the year changes the build-up of overload will not go away.

Another idea might be writing down how things will change, and if these changes will be good or bad. This is something worth doing at the start of December too, and it might be that you do it all in one go – talking about how things will change for Christmas and New Year, and how they will change back. Or you might do another chart for January talking about how things will change back, how this makes you feel and what the impact will be, for example less time around the house, different food, and the fact that that might make you feel more stressed or overloaded. (If you want to find out more about our strategies for dealing with transition check out our book on the topic https://www.jkp.com/uk/helping-children-with-autism-spectrum-conditions-through-everyday-transitions.html )

If you can you might also ease yourself back in to things slowly. So plan things out: What day are you taking your decorations down? When are you going to change your diet? Perhaps don’t plan one day to switch everything back, spread it out over the first week or so of the year so that it is not so overwhelming. If you have work or school then you will have a set day you need to be back at that, but perhaps don’t change everything on that date. So you could take you decorations down the day before or the day after so that the change does not happen all at once.

It might also be worth planning a few nice things to do in January. It’s a month most people dislike and it can be made better by having something positive in it. This will not work for everyone as making plans to do things outside the norm can sometimes just create more stress and change. For me a positive plan might be to try and get out for a few walks in the park. So nothing with any real social interaction or travelling, just something to help ease the tension in a house containing two overloaded, autistic people!

It might be that your plans are small and specific like mine, or it might be than having a few bigger plans works for you. Nothing will work for everyone, and everyone is different so just find what works for you and stick with it.

December and January can be hard months – fun at times, but also hard – and one key thing that you have to bear in mind is some, not all but some, of the change you can opt out of. You don’t have any control over school, college being closed, but perhaps if there are shifts on at work you could take them. You can’t stop everyone else putting up Christmas decorations, going out or having a party for New Years, but you don’t have to make a fuss about any of it. You don’t have to change what you eat, what time you go to bed, you don’t have to stay up till midnight, and if you work from home you don’t have to stop working or change your routine over the holidays. I am not suggesting that you don’t get in to the holiday spirit as lots of autistic people (like myself) love doing so even if it comes with some challenges. But what I am saying is that for some people not making those changes, and therefore having less to change back in January, might make this time of year a bit easier. And if that’s the case then my point is that you should do what works best for you regardless of any pressure from family, or society as a whole. That might be more of a tip for the coming December, but I just thought it was worth putting in.

With all that being said I don’t want to sound like I am being wholly negative about this time of year. It can be nice to start a new year and look forward to the year ahead. It’s just that I know from my own experience that it can also be a hard time of year. Hopefully you all had a good Christmas and New Year, and January is not proving to be too difficult for you.

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?

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

Why the frustration of planning for Christmas is worth it for autistic people.

For most people the idea of getting time off school, work, or college for Christmas is a good thing, and something to look forward to, but for some autistic people that is not the case. Change of any kind can be hard to deal with, and Christmas is a very strange time of year how ever you look at it. It’s a huge change of routine; breaking up for Christmas is in itself a big change as the normal day- to-day routine no longer applies. You are not going to the same place each day, or doing the same things, and that might mean having to put aside a routine you have spent months working on, and getting used to. Added to that is all the other changes that come with this time of year – some bad and some good, but all change. Places look different if they are done up for Christmas, the food you eat will be different, what’s on TV will change, you might have to spend more time with family, and of course there will be the buying and receiving of gifts. It’s worth pointing out that just because you are autistic does not mean you can’t enjoy Christmas, it just means that all the change might lead to things like overload or outbursts related to sensory overload and meltdowns, it definitely has for me in the past.

That can sometimes be the most difficult part of planning for an event like Christmas – balancing the feelings of looking forward to it with the practicalities of having to plan for it. Ways of planning for the changes that come with Christmas are talked about in more detail in some of my other blogs (which I will be posting links to in the coming weeks) but I just wanted to use this blog to talk about how strange/hard it can be sometimes to put them in to place.

It might be that you love Christmas, that it’s your favourite time of year, and you start looking forward to it months in advance. You might love the changes that come with it: time off school, different food, and presents. But that does not mean that all the change of routine won’t lead to overload and outbursts, and yet even if you know that on a practical level thinking about it might still feel like it’s making Christmas more serious and negative than it needs to be. If you have to draw up charts, and sit and talk/plan everything fun, for example holidays, Christmas or going out then it’s easy to grow frustrated, and to feel like doing that is stopping you from being able to relax and enjoy yourself. It’s hard enough sometimes to have to plan for things you don’t want to do, but having to remind yourself that even fun things can come at a cost can be even harder. But that being said it’s worth keeping in mind that however hard it might be, or however frustrated you feel at having to plan and prepare again, anything that helps prevent outbursts or meltdowns ahead of time is worth persisting with. It might be that you find yourself at a point where you have to make decisions about what you do over Christmas based on past experience, and that might lead to you cutting out things you enjoy. For example you might like the idea of staying up late, but realise that in the past if you didn’t stick to your bedtime routine you tended to have outbursts and be left feeling worse. So you might have to make the call of not doing something you enjoy in order to try and prevent overload and outbursts. Again this might not feel good, and you might end up resenting having to do that, but it’s worth recalling how bad overload and the aftermath of an outburst/meltdown feel. Having to face up to your own limitations is never an easy thing to do, but I have found that at times it is necessary. After all, even though that might sound like quite a serious thing it’s really just about trying to make sure you have a good time, and not doing things that are going to bring you down in the long run.

The other side of this are people who hate Christmas and the holidays, and just try their best to stick to their normal lives, and not get drawn in to it. That’s fine to a point, but it can also be hard to do. If you work you might be able to work over Christmas, but if you are at school/college you will have time off whether you want it or not. You might not decorate your house for Christmas, but you won’t be able to stop everywhere else looking festive; in short you can only block it out and stick to your normal routine up to a point. So even if you don’t want to engage with Christmas, and plan not to think about it too much you might still find that if you don’t plan for it then it will leave you overloaded. Just because you don’t want to be part of a change does not mean you can stop change happening, so it would be worth planning for it anyway – perhaps it would be worth drawing up a chart looking at how things will change, and when they will start to change back. Working out in advance anything you might be doing in terms of going out, and thinking about how where you are going might be different than it normally is, and how this might impact on you.

Whether you enjoy Christmas or not there are two things that can not be denied: one, Christmas is a big change from our normal lives and routines, and two, despite how fun it can be it can also be a very overwhelming time for autistic people. That’s why it’s always worth taking the time to plan for. There are numerous reasons why you might not want to sit down and plan for Christmas, be it that you are worried about taking the joy out of it or that you would rather just ignore it, but in the end it is always best to be prepared, and to try and head-off overloads and meltdowns before they happen. Taking the time to plan and prepare might not make everything perfect, and prevent all overloads or outbursts, but it will go some way to making Christmas time that little bit easier.

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?

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

Why I have been avoiding shows about autism.

Last year I watched The A Word and did a review for each episode, but this year I have not even caught up on the first episode of series two yet. This is in part due to me being busy and having a lot of other things to watch, but it is also due to the fact that I find it quite hard and cringe-inducing to watch shows/films that seek to portray autism. That’s also why I never got around to watching Atypical, despite thinking that I should write something about it. So why have I been avoiding shows with autism in them? And should I keep doing so?

There has been a bit of patten in recent years with The A word, The Good Doctor, Atypical and the Accountant among others all being released to media praise, and a backlash from autistic people. It normally goes something like this: The show/film comes out and gets widely praised for having an autistic character, autistic people let themselves hope it will be done right, watch the show/film only to find out it`s been badly done and is mostly just stereotypes, and react badly to it. We write blogs and post online about why the film/show is getting things wrong, and urge people not to take what that program is showing them as a realistic image of what autism is, then the show`s/film`s creators respond by saying that the show/film is not meant to represent everyone with autism, and can not tell everyone’s story, and that’s the end of it until the next show/film.

Firstly to address some of those points: of course each show and film can only tell one story, and is not meant to represent everyone, but some of the stories we see in film and T.V. do not seem to represent anyone; they are just stereotypes brought to life on screen. Plus you only have to look at the Rainman effect to see what power films and T.V. have over how people see autism and autistic people. Even now, well over twenty years since its release, it is still one of the first things some people go to when they think of autism. It`s not that it`s a bad film, it`s just that lots of people don’t want to look any further in to a subject once they have seen one film or T.V. show on it. They think they understand it now and can talk about it like experts. The truth is autistic people understand that one show or one film is not going to show everything there is to know about autism, but sadly a lot of non-autistic people do not seem to understand this. Therefore those shows/films have a power that most others do not; they will help shape and create non-autistic peoples` views and perceptions of autistic people for years to come.

So when a new T.V. show comes on the air autistic people tend to have a mix of feelings; we want it to be good – why would we not after all? But we also worry that it will be bad. If it is bad then some of us will feel we have to react to it; to keep watching through the cringingly bad attempts to show how autistic people talk, think and feel, to keep watching even if it passes the point of being offensively bad. And sometimes it is worth doing that – you can`t write about something or hold it to account if you have not watched it. You can dislike an idea, but to call out a show or film you do have to sit down and watch it. You have to think about why it`s bad, write that down, edit it and post it somewhere, and that’s the thing – sometimes it just does not feel worth while doing that.

It is always worth autistic people speaking up and challenging poor portrayals of autism on T.V. If we do not do this then who will? And like I said those portrayals, if left unchallenged, will dictate how non-autistic people view autism. But still, having to watch through them can sometimes be trying. It`s hard enough to have to watch bad films and T.V. without falling asleep or drifting off to find something better to do, but when you have to watch bad TV/films that also try and fail to show autism it becomes even harder to get through. It`s hard to put the feeling in to words; it`s not always that things are offensive, although sometimes they are, it`s more that it can just be downright painful to watch sometimes. I am sure we have all seen a film or T.V. show that got stuff badly wrong when showing autism, and if you have then you will know the feeling I am talking about.

It can feel like autistic people are having to say the same things over and over again when talking about how autistic people are shown on T.V. We pick up on the same issues time and time again, and talk/write about them, and yet not much seems to change.

So is it worth watching and reviewing these shows/films?

It`s always worth talking and writing about how autism is portrayed in film or on T.V. Even, or perhaps especially, if it is a bad portrayal. Of course anyone can review anything, but the views of an autistic person must hold more weight when talking about autism on screen. That being said no one is ever obligated to review a show or film. Once you start writing about things like that it can start to feel as if you need to watch everything to keep up with what’s going on, and give your views on every new T.V. show that comes out. But you might not want to; you might be fed up of watching TV/films that frustrate you, but also you might just not have time to keep up with everything. Right now autism is a pretty big deal on T.V. There are new shows coming out about it all the time, and it would be hard for anyone to keep up.

In short yes it is important for autistic people to speak up if we see a bad, negative, or flawed image of autism on T.V. and also to say when people get stuff right, but it`s also totally understandable if we need a break from doing this from time to time. I will try and catch up on The A word, and despite my talk of bad portrayals of autism on T.V. I will keep an open mind going in to it. And while I can`t watch and talk about every show that deals with autism, I do try and read as many reviews of these shows by autistic people as I can.

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?

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

Why I have not been writing.

As you might have noticed I have not been blogging much over the last few months. I did write a post about this a while ago talking about why I had not been writing, how low my mood was and saying I was going to try my best to get back in to writing and blogging, but as you can see things have not quite gone to plan. There is no point going over those issues again too much, but I thought it worth addressing as I am trying once more to start blogging.

As you will know if you have been keeping up to date with my blog I have been finding it hard to write, or in fact hard to do much of anything for quite a while now. This has been due to a mix of overload, depression and family issues. Back in August when I first wrote about these issues I did mean to start blogging again, once a week if I was able, but it did not work out that way. I have been finding it hard to get rid of my overload, and have been overloaded almost constantly, to the point of not being able to do anything. I will write about this as an issue on its own as it’s still on-going, and there is quite a lot to be said about it. But I am sure you can understand that if I am so overloaded I cannot even think straight, or sit down to relax, that writing,editing and posting a blog has been beyond me for quite sometime.

It is something of a vicious circle as not being able to write has only added to my low mood. For years I was sure that I wanted to be a writer, that writing was something I enjoyed and would always want to do. But when my mood dipped, and I was so overloaded I could not even think about trying to write without feeling worn-out, and fuzzy-headed, some of that belief started to leave me. It’s hard to make a living out of writing. I don’t do that now and I never have done, but my hope has always been to one day be able to make enough money from my writing to live off. Even though that’s hard when you are getting up early every morning and writing two thousand words a day, posting blogs every week, editing one novel while writing another, and having articles published in newspapers and magazines, it is easier to imagine. When you get to the point where you are hardly writing, you are not posting your work, and you are not even thinking of good ideas – or if you do think of an idea you do nothing with it – then it becomes harder and harder to think that you will ever make a living off it.

When I decided not to go back to university it was so that I would have more time to write. At the time it was a good idea; after all, I wanted to be a writer so what was the point in using the time I could be writing to do something else? But then when I became unable to write confusion set in; if I was not using this time to write had I made the right call? I had made a choice, uni or work, and I had chosen work only to find I was not doing either! Now on a logical level I can say to myself that knowing the way I have been feeling the past year or so that university would not have worked for me. As I say I have been too overloaded and depressed to even pick up a book or watch a film a lot of days, let alone go to university. So whatever I had chosen I would not have ended up doing due to my mood.

But even so doubt starts to set in. The more I think about it every job I would want to do involves writing, and I have been writing in some form or another since I was six years old. I have a book published, have co-written two other published books, and have written over one hundred articles so most of my life – certainly any part of it involving work – has been centred around writing, and being a writer. So when I suddenly stop being able to write what am I meant to put in its place? What am I meant to work on? To aim for? It puts me in a place of uncertainty, and casts doubt on plans I have been working on for years. And we all know that change and uncertainty are not good for autistic people. That’s not the only impact – writing is like everything else; if you want to be good at it you have to work at it and do so often. You can not just write once every few months, and expect what you write to be good. Even looking at my writing here I can tell it’s not my best. That being said I do not judge myself too much on my writing in blogs. I feel they are less formal and I tend to worry less about the style of my writing. But the point still stands – if you want to be good at something, at anything, you have to do it as much as you can. Taking breaks for months at a time is never going to have a good impact on your writing skills.

So I can’t write because of my low mood and the less I write the worse I feel.

I have been working on lifting my mood and cutting down on my overload quite a bit over the past few weeks, and I will write more about how I have been doing that, and how it has been helping. You can see of course that what I have been trying has been working somewhat as I am writing this now. Although it is only one blog that in some ways is just going over issues I have already blogged about, or setting up blogs I plan on writing, but have not written yet, I am still glad that I was able to sit here and type it out. It might not be a lot when compared to what I used to do, but compared to what I have been doing most days for, well for most of this year, which is absolutely nothing, it is a lot. But how ever much it is I am just happy I have been able to write something, and I plan on keeping it going. My aim now is to write something, even if it’s only a few lines every day, from now until the end of the year, and then take stock in the New Year and see where I go from there. Things are still hard in lots of ways, but I feel more upbeat about them now than I have done for the last few months.

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?

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

100 BLOGS!

I recently posted my 100th blog on ASK-PERGERS. I am writing this after the fact so it should be around post number 102 now. There is not a massive amount to say about this, but I wanted to make some acknowledgement of the milestone. A lot of hours of writing and editing have gone in to getting to one hundred posts, and I am glad that I have been able to stick with it and keep thinking of things to write about. I have been giving some thought lately to why I started the blog, and if I feel it is accomplishing what I wanted it to when I started out. So why did I start the blog?

  1. I wanted somewhere I could write what I wanted to write without having to pitch the idea to someone, or have an editor change it. It’s not that writing for other people is bad, it’s just nice to have a place where I can put down my ideas without having to run them past someone who can reject them. People might not read what I write, or they might not care about it, but there is nothing and no one stopping me from writing it. It would be kind of hard not to accomplish this as that is the very nature of a blog, so just by using my blog and writing with freedom, I am accomplishing this goal.

  2. I wanted to help educate people about autism. I can’t speak for all autistic people, and I don’t claim to be able to, but I do hold the firm belief that autistic people are the best experts on autism, and we are the ones who should be listened to by those wishing to learn more about autism. Have I been able to educate people? The feedback I have received leads me to think that I have. Parents often tell me that they feel they understand more about their autistic child after reading one of my blogs. This is great on two levels; one, it makes me feel good about what I am writing, but also it means that parents are listening to me as an autistic person, and realising that the best way to understand autistic people is just to listen to us when we explain something.

  3. I wanted to see how much other autistic people would be able to identify with what I was writing about. Often when I read other blogs or tweets, or even look at memes made by autistic people, I can instantly identify with what they are saying. They might be saying something that I have never heard anyone else say before, that I realise applies to me. I learn more about myself and about autism from reading the writings and tweets of fellow autistic people than I do reading any books written by so-called experts on the subject. I read something another autistic person has put out there, and realise they have given words to something I have always felt but have never been able to sum-up. So part of me wanting to write about autism – and especially any of the blogs that relate to my personal life/feelings – was in the hopes of being able to do that for someone else. Have I managed to do that? Once again by looking at the feedback I have had over the years I can say yes. Often when I post one of the more personal blogs I will have autistic people reply to me and tell me they are happy I wrote it, and that I summed it up perfectly. This works two ways; I get to write down something that I find hard, or write about something that impacts my life without knowing if anyone else out there is going to feel the same, and put it out there, and someone else gets to find it, and we both get to recognize that there are others out there who feel the same as we do.

Those are the key aims I had when I started to blog, and as you can see I feel that each one of them has been a success. There have been other benefits of blogging too of course: I have met and talked to a lot of new people, got better as a writer, and also found that when writing is hard I can often still get some done by working on a blog rather than having everything be a big project like a novel. But those are the three main reasons I started blogging, and I feel that with those three being accomplished – as well as all the other benefits – blogging has been well-worth starting, and is definitely something I want to keep working at. At times it can be hard to think what to say; I feel that I need to make some important point in each blog or educate people all the time, but the truth is it all goes back to that first point – if it’s your blog you can put anything you like in it, and that is what is so good about blogging.

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?

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, and why I haven`t been on social media recently …

I have been trying to do ASK-PERGERS? a bit over the last few days, and posted a blog a few days ago, but before that I had not done any work or even logged on to ASK-PERGERS? for about a week. I run ASK-PERGERS? with my Mum so you might have seen a few things being tweeted out by her in that time, but I was not on at all. And it was not a planned break; I just ended up not going on, and not working on my writing for a week. So why was this?

The whole point of ASK-PERGERS? is that I talk and write about autism; I write about the positives of it and what I enjoy about being autistic, but also the negative side and those things that I find hard. If you have a blog and you want to grow it you need to post regularly, the same if you want to improve your social media presence. I want to grow both the blog and our following on social media – and it’s not that I plan on making a lot of money by doing this, that’s not how it works – but of course I want to connect with more people, and get my writing out there as much as I can. Like I say to do that you need to be putting some work in most, if not every, day and yet by the very nature of being autistic that’s not always easy to do. When I am stressed, overloaded or struggling to be able to do anything due to lack of routine, or underlying worries it can be hard to find the energy to even log on to social media, and find things to share. Or my mind is just so overloaded that I don’t even think to do anything on ASK-PERGERS? The week I had away from my writing work recently was a mix of those things. I have been finding it hard to make and stick to a routine. I was trying one, as I put in another blog, but due to some underlying issues it’s been hard to stick to. That has been throwing me off, and meaning that for quite a while I was getting up unsure of what to do; feeling stressed and overloaded with nothing to bring me down from that. Because I did not have a routine I found myself going to bed a lot later each night. I have found if I don’t have plans for the next morning I will just stay up until I feel so tired I have to sleep. But I don’t sleep in much in the mornings so this leads to me being much more tired the next day, which in turn makes it harder to plan the day out, and stick to that plan. For a lot of the time doing ASK-PERGERS? just did not come in to my head, and when it did I was so tired and overloaded that I just did not find myself wanting to do it, and would put it off and forget about it again.

I don’t want to make a big deal out of the fact that I did not go on social media for a week; I know that it’s fine, and I can just pick up from where I left off, and that’s what I have been doing. But I just wanted to call some attention to the fact that sometimes even things that seem small, like going on to Twitter to work, can feel so overwhelming that they end up being left for days on end. And no matter how important something is to you, sometimes overload and stress make it almost impossible to do.

As I say I did not plan to take a week off; in fact most days I thought that I had better do some work on ASK-PERGERS? but it just never happened. In itself it’s not a big deal, but it is a good example of how things can slip away. Once something starts to feel stressful, or I start to feel too overloaded to do it then it can easily run in to weeks before I am able to get on with it again. It’s a strange thing that the very nature of what I am writing about can make my writing, and work on social media, hard, but that’s how it is. But then again it works the other way around too; of course now I have gone from finding it hard to write, and do work on social media to writing about finding it hard and posting that to my blog. Not doing ASK-PERGERS? for a week is just one example of how things can drift away and get left if I feel overloaded, or do not find a way to work them in to my routine. If I have a good routine or plan for the day, and know what I am doing and when and do not allow myself to get to the point of being too overloaded, then I can be quite productive day to day. But if things are not planned out well, or I am having a day where I am overloaded or overly-stressed then I can often end up doing nothing at all, not even the seemingly small, easy things that I enjoy and want to do.

PS: I wrote this blog last Monday and yet I am only just getting around to editing and posting it now. But it is still as true now as it was when I first wrote it. I ended up taking another break from social media for around six days due to a mix of the same reasons talked about above. I think the fact that it took me so long to be able to work on this blog again, or even think about it after it was written, just helps to back-up what I say in it.

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?

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