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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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Autism and the Heatwave: Why I find the hot weather so hard.

As I am sure you are aware the UK has been in experiencing a heat wave for the past few weeks, as has most of Europe and North America. Temperatures have gone in to the early 30s in the UK on some days, and while it has been a bit cooler the last few days the temperature is set to rise again for the coming week. Some people have been enjoying the heat and some have been putting up with it without much complaint, but it has driven home to me just how hard I find the hot weather. At times when the heat is too much I find it hard to do even the most basic of things. Let me explain why the heat impacts me so much.

I talked in a blog a while ago about how a cold for me is worse than pain a lot of the time. A cold brings with it a whole host of sensory issues, and sensory issues more than pain make it hard for me to do things, and lead to overload. The heat is the same; I sweat, my clothes feel uncomfortable on me, my skin is hot and overall my body feels different to how it feels for most of the year. These feeling might not mean much if you are not autistic, but when you do have sensory issues having your whole body react and feel different to the way you are used to can have a big impact. It’s not just that I am overheated and sweaty, it’s that those feelings – the feeling of sweat on my skin, the heat of the sun, and so on – feel wrong. There is no basic state you can go back to when sensory impact becomes too much. On a normal day I might go outside and find things too noisy or overwhelming, and come home. After a few hours of rest on my own, controlling my own sensory input, I would be able to get back to my basic level. There would not be any unwelcome sensory input, and that would help me avoid overload.

But when it’s too hot I find I can not do that. How can I go back to a basic day to day normal level of sensory input when I am sweating just sitting at my desk, when even just doing nothing is causing a high level of sensory input I would not normally have? And it’s not just that: it’s the smell of sun-cream, the constant noise outside (playing, cutting grass) and all the sounds, smells etc. of people trying to make the most of the sun. It might not sound like a lot, but a large part of it is the fact that for nine months of the year there is none of that, and then it is all day, every day, and that sudden change makes it harder even though you know it’s coming. This year it has also been the sheer unrelenting nature of the heatwave.

The more sensory input the more overloaded I become, and the harder it becomes to do anything.

Along similar lines I find it impossible to get comfortable in the heat. I tend to like to wear the same things all year round, but even when I do make concessions to the heat and wear a T-shirt without a top over it I find even that sticks to me. If I want to go outside or I have something I have to go to it’s even worse as I have to put sun-cream on, and there is not much I hate more sensory-wise; the feel, the smell and the way you can feel it on your skin for days. Too hot, too sweaty, clothes too uncomfortable, and extra sensory input from all sides – it’s pretty hard to feel comfy or relaxed. Even taking a shower will not always help. I find that if it is too hot I start to sweat when I get out of the shower, and I always feel the need to be fully dry before I put any of my clothes back on so this can make it quite hard. I feel the benefit later in the day, but when I get out of the shower and start getting dry, and find myself unable to fully dry off due to sweat it can make me feel even worse!

There is also the fact that it becomes harder to stick to a routine. Partly because of the heat and partly because of other peoples reactions to it. I might have a plan for the week only to find that it is far too hot to do something I was planning to do. This might be saying that I will clean the house before lunch only for it to be 30 degrees. I start thinking “Well if I do that cleaning in this heat I am going to need a shower, I don’t have the energy to do all that now”. Little things like this can add up, and make it hard for me to know what to do and when. Things that are not normally hard to do become hard because of how badly I cope in the heat which means it takes longer to build up to them, which can throw my whole plan for the day off course.

Add to that the fact that other people might change the plans, “Do you really want to do that on a nice day like today?” “Would it not be better to do something outside?” As soon as the summer heat comes you will find people wanting to change their plans and routines, which in turn can mess up your plans and routines.

Of course it’s not only autistic people who do not enjoy the heat, and not all autistic people dislike hot weather, but speaking for myself I hate it. I do like the way things look: clear bright blue skies, bees buzzing around, and sunlight shining in through windows, but other than that there is nothing fun or nice about the heat for me. It always knocks me back somewhat, and it takes me a while to readjust to it, and be able to get back some kind of work routine, but this year has been much worse than normal. Partly due to the fact that I have been having a hard time making and sticking to a routine anyway (hence the lack of blogs) and partly due to the fact that it has been so much hotter than normal this year. I was hardly able to do anything for about two weeks with the heat. I have been able to do a lot more over the past week due to working out a new routine that works for me and sticking to it, but for a while there the heatwave pretty much stopped me from functioning. It looks as if summers like this are here to stay though due to climate change, so in the years to come I might have to work out more ways of dealing with the heat.

How does the heat affect you? And if you are autistic and find the heat hard what do you do to help yourself deal with 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

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

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

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

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And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Why 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 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

How the media is shaping public perceptions of autism for the worse.

I was planning to write a few more specific response blogs to some of the stories that have been doing the rounds on Twitter over the past few days, but I just don’t have the inclination to sit down and give each story so much time. If you`re not sure what I am talking about let me explain.

First of all we had the autism/radicalisation story in the Daily Mail; a story which implied that autistic people are more likely to become terrorists, and I did take the time to write a full response to this one. Then over the weekend I came across another story, this time linking autism to screen time. In this article a professor of neurology talks about two studies which he claims show a link between screen time and autism. The idea being that some children can develop a type of autism from spending lot of time on Ipads or laptops, and if parents take those away and play with the children more then the autism will go away. A ridiculous story that harks back to the days of the refrigerator Mother, and once again a story written by a professional, based on work by other professionals, that has angered and offended the autistic community.

Then there was a story by writer Kathy Lette, again in the Daily Mail, in which she talks about feeling the need to hire a sex worker for her autistic son as he felt he would never be able to get a girlfriend on his own. As a lot of people on Twitter have already said, it`s not the idea of using a sex worker that’s the problem. It`s the fact there is nothing in the article to suggest that Lette talked to her son about the idea, not even when she came close to picking a women up on the street. It reads as if her plan was just to pick the woman up, turn up and present the woman to her son. Not even going in to the fact that he might not have wanted sex then, or with that particular women, there is the issue of planning. Doing anything that is not planned for, or part of the routine can be hard for autistic people. But something like this should never be sprung on anyone, least of all some one with autism. There is also no input from her son in the piece, and not even a line to say that he is happy for her to write about him in this way. I fully understand that there is a limit on words in an article, and perhaps she did talk to her son both about her idea and about writing the article, but what’s angered a lot of autistic people on twitter is that neither of those things are in anyway clear. It reads as if the plan was hatched and nearly put in to action without him knowing at all. And while this point might have nothing to do with autism, there is also the fact that the writer seems to make no distinction between hiring an escort from an agency, and picking a women up off the streets. From what I understand women working for escort agencies are perhaps less vulnerable, and exploited than women who are forced to work the streets.

All of these articles drew a lot of reaction from the autistic community. There was anger of course, but the overriding feeling seemed to be one of frustration. How many more ridiculous stories about autism are there going to be? We live in a world where, based on one debunked lie from a disgraced former doctor, thousands of people believe that vaccines cause autism. A world where people can go on T.V. and claim to cure autism by changing children’s diets. A world in which some parents will buy and then feed their children bleach because some con-artist has sold it to them as a cure for autism. And not just a world where every school shooting is linked to autism, but now a world where professionals think it`s OK to go in a national news paper, and link terrorism with autism as well.

There are of course other issues: hate crime, so called mate-crime, benefits being slashed, lack of employment for autistic people, autistic people being locked up for years in institutions with no good cause, and there are stories in the media of parents killing their autistic children, and almost being given a free pass by the press due to the stress of `putting up with` their autistic child for so long. I could go on.

It might sound like I am being negative, but I am just stating the facts when I point out the issues that face the autistic community. It`s important to recognise what these issues are if we are ever going to do anything to deal with them, and bring about some changes. But sometimes it does feel overwhelming, and that’s where the frustration comes in. Autistic people want to do what we can to fight against the levels of ignorance in society, but when we see that ignorance floating down from the top levels of the professional world it can feel as if everything we are trying to do is being undone by those who claim they are trying to help us. And it`s not just professionals, it can be some parents too, like those who cling to the idea that vaccines cause autism.

I feel – and this may sound a bit self-serving, but I am not just talking about myself here – but I feel that reading the writings of autistic people is the best way to understand autism. I know when I read other autistic peoples` blogs or posts on twitter I lean more, and recognize more that I never realised or thought of, than I do reading any study or report. And yet it seems that for the most part it`s harder for autistic peoples` voices to break out of the autism community, and in to the mainstream than it is for parents and professionals.

What I mean by this is that autistic writers and bloggers talk a lot of sense, and yet it feels like our voices are mainly being heard by those already in the autistic community. This does not mean there are not some well-known autistic writers in the mainstream such as Temple Grandin, or that nothing autistic authors write gets picked up by the media. But I do think overall it is harder for us to get our voices heard. Where as a professional – and to a slightly lesser extent a parent – can have an idea and no matter how silly it is, or how detrimental to autistic people, it can and often will get mainstream press coverage. Leading to ideas such as autism being caused by vaccines, being cured by diet, or being linked to screen-time filling up peoples timelines, and becoming part of the casual view of autism held by those who are not autistic, and don’t know anyone who is. Whereas genuinely good, thoughtful, insightful, and helpful ways to deal with real-life issues facing autistic people are often stuck within blogs, or on message boards being viewed by only a small amount of people.

It feels as if what you have to say about autism matters more if you are someone who works with autistic people, or a parent of autistic children than if you are autistic yourself. This makes it harder to fight the other battles that need to be fought when those who are meant to be helping you hold so much more power than you do. Even more so when they use that imbalance of power to spread silly or dangerous ideas, and to add to myths and stereo-types around autism.

Often, all the responses to articles like the ones I talked about above will only be read and spoken about in the autistic community, whereas the articles themselves are out in the mainstream.

So what? You might think that as long as autistic voices are being heard by autistic people what’s the big deal?

Well it`s the mainstream that shapes the view of society as a whole, that gets read by the next generation of parents and professionals, and helps to shape their view of autism and autistic people. And I, for one, would rather have those views shaped by the writings and thoughts of autistic people themselves.

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