Category Archives: Autism

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

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Why I have been avoiding shows about autism.

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

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

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

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

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

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

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

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

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

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

Why I have not been writing.

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

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

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

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

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

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

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

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

100 BLOGS!

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

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

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

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

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

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

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

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

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

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

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

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

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

Autism and issues with my routine ….

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

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

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

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

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

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

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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Autism, and how routine is helping my low mood.

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

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

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

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

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

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

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

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

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

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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

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?

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

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

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

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

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

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

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

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

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

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

If you need any help or advice abut Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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

Are autistic people at a greater risk of being radicalised?: My response.

A few days ago an article was published in the Daily Mail in which Clare Allely, a lecturer in psychology at the University of Salford, stated that she thought autistic people might be at more risk of being radicalised and explained why she thought that was. I will cover some of the points made in the piece and talk about why I disagree with the article itself, but it might be worth you having a read of it before or after reading what I have to say about it. http://www.dailymail.co.uk/health/article-4633128/Autistic-people-risk-radicalised.html

Let’s start with the opening lines. First of all the article talks about people with `traits` of autism. Right from the start this is vague, and unhelpful language. If you know anything about autism then you know that you are either autistic or you are not. You can’t have people with `traits` of autism, but what you can have is people who act in a way that is stereotypically thought of as autistic. What I mean by this is people who would be classed as `loners`; those people who do not have a lot of friends and tend to spend most of their time on their own in their rooms. Yes some autistic people might be like that, but this in itself is not a sign of autism.

The article then goes on to explain what terrorism is, and that the last few years have seen a rise in so called `lone-wolf` attacks where an individual commits an act of violence due to being radicalised without necessarily being part of a wider group. It lists the types of terrorist, and then jumps in to explaining how being autistic can make you more likely to participate in terror activities. The aim being to “ ..illustrate how some of the symptoms of ASD can ‘help’ make a pathway towards being inspired to act on behalf of a terrorist cause, join a terrorist organisation, engage in directed attacks – or indeed carry out lone wolf terrorism.”


Now where to start with this? First off there are no `symptoms` of autism – autism is not a disease. This might sound like a small point in the wider scope of the article, but when as an autistic person you hear words like `traits` or `symptoms` being thrown around it’s hard for you to take anything else that is being said seriously.

Then we have the so-called `symptoms` themselves; the things that apparently make autistic people more likely to go out and murder innocent people. The article makes the point that autistic people can often be lonely and isolated and feel a need to belong, as well as having a tendency to hyper-focus, which if they focus on the wrong thing can lead to an obsession. Let’s break these down, starting with the last. Yes autistic people often, but not always do have a special interest or more than one, and often we do dedicate a lot of time to said interest. But why would taking an interest in something lead to a loss of feeling or a desire to kill? I know a lot of non-autistic people with a keen interest in serial killers: they know all the names, read books on them and watch hours upon hours of TV about them. But this in no way means they want to hurt anyone let alone kill them. It means they have an interest in a dark subject. Of course this is different from looking up terrorist videos online, but my point is – autistic or not – having an interest in people who do bad things does not mean a loss of all human feeling, or a desire to go out and replicate the things read about. Autistic people are making the point more and more that special interests can be, and often are a good thing, and most of the time if they are not positive per say, they at least are not negative. But too often they are still talked about by professionals as `obsessions` and treated like something that at best should be tolerated, but never embraced. Linking them to an interest in terrorism and acting as if they can be the first step on a path to murder is hardly helping autistic people fight the old and out-dated negative image of autism itself, and special interests in particular.

What about the issues of autistic people being lonely and isolated?

It is true that some autistic people can find themselves in this situation. I have spoken to, and know many autistic people who do most of their communicating via their computer as they find it hard to go out and interact with people face to face. I myself don’t go out and socialize much, and I never have.

I understand the underlying idea that if you find yourself alone, and not fitting in you can end up falling in with a `bad crowd` so to speak. You can end up changing yourself to fit in with the people around you, whether you’re autistic or not. But again making the jump from that to someone being willing to kill people, and then die themselves just to gain a bit of respect from someone on the internet seems a bit far-fetched to say the least.

In fact autistic people from what I have seen (and I don’t have statistics, I am just going off the hundreds of autistic people I have spoken to, or read about) seem much more likely to hurt themselves when they sink in to the depths of loneliness. Depression can set in and people can turn to self-medicating with drugs, drink or self harm as can non-autistic people. Again I am not saying this is the case for all autistic people, but it is much much more likely than someone planning to deal with their loneliness by committing murder.

The article has no weight to it whatsoever. It says that because autistic people can be lonely and need to fit in they are more likely to become terrorists, and yet all it offers us to back that up is two cases of autistic people becoming terrorists. I don’t for one second dispute the fact that there will be autistic terrorists as I feel that there are autistic people in every walk of life – both good and bad. But to make the headline-grabbing claim that autistic people are more likely to be radicalised is just foolish and lazy writing.

But it’s not just lazy.

To make the jump from saying some autistic people might be lonely and looking to fit in, to them being willing to go out and commit murder is a strange jump. I worry that the only real way to make such a jump is to accept the defunct idea that autistic people don’t feel empathy. This is an idea you still see pushed by professionals in some places despite it being outdated and wrong. Autistic people sometimes do find it hard to express how they feel, or even understand it themselves, but that’s not the same as not valuing human life, and being willing to take it. In fact lots of autistic people are overly emphatic, and are profoundly affected by what they see on the news. This might not always be visible, or even understood by the autistic person themselves (it might just come out in a sudden bad/low mood).

Autistic people have been fighting to get rid of the idea that we are unfeeling and cold-hearted for years, and saying that we are more likely than non-autistic people to become involved in terror is not helping that fight at all.

But it is nothing new; each time there is a school/college shooting in the USA what is one of the first things we hear? The shooter was `kind of a loner`, and then within hours that changes to `perhaps autistic?`. Why? Because he spent a lot of time alone and was `weird`, and apparently that’s all you need to be to be classed as autistic. It’s just something else that makes the killer `other`. In the shock people cast around for something, anything to help themselves make sense of the senseless violence. And they light upon the idea of autism. Autism is different. Not all children are like this so what are people meant to think when they hear that “ if your child’s class has an autistic kid in it, he is the most likely one here to start shooting”. That might not be what’s said, but if you hear autism talked about in the wake of each and every shooting it’s what people start to think. I know of one case where a mass shooter has been autistic (not saying there is just one, just that’s the one I know about) but I know of a lot more where autism has been talked about despite the killer being dead and undiagnosed.

Autism has nothing whatsoever to do with violence. And yet we keep hearing it spoken about as part of the motivation for killers. If we start hearing it talked about each time there is a terrorist attack, to where could this lead? At best it will lead to a more negative and fearful view of autism and autistic people – putting the public image of autism back years, and undoing a lot of the good work done by autistic people to promote a more positive, and realistic view of autism.

At worst it could lead to the public viewing autistic people as a danger, and autistic people suffering because of this. We have seen Muslims being attacked due to the idea promoted by some of the media that they are `all terrorists`, or `sympathise with terror`. It might seem like a jump to imagine the same thing happening to autistic people down the line, but there is already an idea in the media that we are dangerous due to the constant linking of autism and shootings. If the same starts to happen with terror attacks then given the current climate, and desire to place blame, it would not be wholly unlikely to see autistic people being shunned, or even attacked.

Also, without wanting to turn this in to a personal attack, I do find it worrying that the writer of this article teaches the next generation of psychologists. When you see a point being made in the national press with so little weight to it, that can cause so much harm to the people it talks about, you do worry about the fact that the next generation of professionals might believe it, and have the ideas generated by such stories in the back of their minds when working with autistic people.

The article claims that it is going to offer advice on how to help autistic people avoid being radicalised. This is apparently the justification for writing about such a topic. But in fact the article hardly says a word about how to stop this supposed problem. It simply makes a lot of wild claims, talks up the idea, and then ends. It is not as if this is a real documented problem and the article is there to provide help. In fact the article expressly states that there is no evidence for the claims that it makes and the research in to autism and radicalisation is `in it`s infancy`. Given that this is explicitly stated toward the begining of the article it seems even stranger that towards the end there is a call for all terrorist suspects to be assessed for autism. It is highly irresponsible to make a call for action as big as this while at the same admitting you have no hard evidence to back up the claims that this call for action is based on.

People with Autism Spectrum Disorder may be vulnerable to ISIS propaganda

  • Autistic people are more isolated and lonely and so may be easier to target
  • Their obsessive and compulsive tendencies could also put them at a higher risk
  • Findings suggest people involved with terrorism should be evaluated for ASD

    So if people with ASD could be at higher risk, how can we protect them from falling under the spell of terror organisations such as the so-called Islamic State?

I know this blog is a few days late in responding to the article, and some of you might feel that I should have ignored it instead of drawing more attention to it, but as I have tried to make clear I do not feel that the article is the whole of the problem. I feel it is part of a wider issue where autism is linked to violence, and autistic people are demonized. And once a group of people are demonized it changes the way society views them, and leaves them vulnerable to abuse and even physical attacks. Autistic people are misunderstood, and vulnerable enough as it is.

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