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Beneath the Mask lies …. who?

In November 2014, when I was forty eight years old, I was diagnosed with autism. Since then I have been trying to write something about being diagnosed so late on in life, but I seem to have a complete block these days when it comes to writing, even though writing is something I have done all my life. My adult autistic son keeps asking me to write something for his blog, and I have tried so many times, but I just seem to blurb out a load of nonsense and not have the energy to edit or try to make it make sense in any way, and so there is never anything for the blog from me.
I have not had time to process what an autism diagnosis means for me – if it is a good or a bad thing – and do I feel better or worse for having this diagnosis? I thought it would it be a good thing, and give some meaning, some explanation for my past, and that I could use it to move forward in my life, armed with the knowledge that I am not broken, or a failure, or that life is wasted on me as I have always thought, but that I am autistic, and that is who I am, what I am, what I have always been, and that I finally know and understand who and what I am. That I could claim autism, being autistic, as my identity.
But nothing could be further from the truth.
In all honesty the one thing that has become clear to me since being diagnosed as autistic is that I have no idea who I am, what I am, or where, or even if I fit in to the world.
Every day it is becoming clearer and clearer to me that I have masked and faked my way through my life, and that no one really knows me, and I don`t even know myself. I feel as though I don`t exist outside of what I do for other people.
This is not to say that I have not had genuine feelings for people, that I didn`t care about them or love them, and the things I have done for them didn`t mean anything to me. That`s not what I am trying to say.
I`ll try to explain, but I am not sure I can.
It`s like from a really young age, probably four or five, I just didn`t know what to do, how to be. It`s like I read the hand-book on how to be a good daughter, sister, friend, partner, Mum, human-being, and I followed it to the letter with no veering from it, no time to think about myself or my own needs. I think I have always been, or tried my damndest to be, exactly what my parents needed me to be, exactly what my siblings needed me to be, exactly what my ex-partner needed me to be, and the perfect Mum. I have always given a hundred percent to every person in my life, every job, every action, with no room for error, no room for mistakes, no room for me.
It is like putting make-up on each day before you can face the world, afraid to let the world see you, who you really are, what you really look like, because you don`t really know who you are, but you know that you can never measure up to other people. And to be honest you don`t know what the fuck you should be doing, or how you should be doing it, so you watch, you observe, you learn, you copy and you do, just to fit in. But you can`t copy and do everything your peers do, at whatever age and period in your life you happen to be, because you can`t get it wrong. Mistakes are not ok. You have to be the perfect daughter. You can never put your own needs, or feelings, or wants above what your parents need from you. And you have to be the perfect sister. You can`t be selfish or think of your own needs, and no matter how overwhelming or exhausting or damaging it is, you have to do what your siblings need you to do. And friends? Well you have to be there for them constantly don`t you? You have to follow their ideas, do what they want to do, put off what is important to you and ignore your own wants and needs and prioritise theirs don`t you? And in a relationship? Well you can`t argue or shout or hurt someone`s feelings. You have to absorb all the shit, but never dish any out. And being a Mum? There`s no room for mistakes, you have to be completely selfless and give everything you have got, and never, ever put your own needs above those of your child. And society at large? Well you always have to be polite, and kind, and caring and put yourself out, even for complete strangers. And when people: family, friends, partners, work colleagues, people in general treat you like dirt, well you just have to take it and never, ever retaliate because the idea or hurting someone`s feelings – even if they hurt yours on a daily basis – is just unbearable. And they are the un-written rules of the metaphorical `hand-book` on how to be a good human-being, except, they are not. They are the rules I imposed on myself because I didn`t know how to be me, how to look after me, as well as being a good daughter, sister etc. I didn`t know how to be a real person, what I was supposed to do, so I subconsciously developed a persona of trying to be the perfect everything to everyone, to make sure everyone else`s needs are met. I still do it. I don`t know how to not do it.
Am I making any sense? I guess what I am trying to say is that because I was so confused and bewildered by life, all my life, I kind of learned how to be the perfect daughter, sister, friend, partner, Mum, employee, student, citizen, always trying to do the right thing by everyone else, that I never really learned anything about who I am? And somehow I have reached the age of 52 feeling as bewildered and confused by life as I did when I was five. And somehow I have blundered through to reach this age without ever really doing anything I have wanted to do (or I`ve had short bursts of trying but never really succeeded with anything) and I have never really known or understood me, who I am, what I want. And I don`t think that anyone else knows me at all, apart from my son. I think my parents knew me pretty well as their testament to how I was as a child went pretty far to me being diagnosed as autistic. I have always been extremely close to my parents, but even with them I had to put on a front a lot of the time when they needed me to help my siblings, and I couldn`t say no. I could never say no to my parents, or `what about me?` I always did exactly what they needed me to do to support my siblings, and I never once complained, or told them how hard it was for me to push myself to do the things they needed me to do.
I know I am not painting a very good picture of myself here, but I just don`t know how else to explain it. I am not the perfect anything, but I have nearly killed myself trying to be.
I keep seeing hashtags about `taking the mask off ` on Twitter, and being your true, authentic, autistic self, but I have many masks, for many different situations, and although I feel they are slowly destroying me, if I take them off what then? How will I go to the shop to ask for something? Make a phone call? Have an electrician or a plumber in the house? Order a taxi? Get my haircut? Interact with my family, neighbours, and society in general? Make sure my son`s needs are met?
Without the masks I can`t function, and if I don`t function I can`t support my son, or even do anything.
I am all for autistic people getting on with being autistic, and not having to go through the stress of trying to fit in to society, not having to `mask`, but if I don`t have my masks then what do I have to present to the world? I can`t present `Me` because I have no idea who that is ….

Jane Donlan

You can find my  sons 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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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

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 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

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

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?

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 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?

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 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?

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