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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

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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

Making my first phone call.

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

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

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

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

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

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

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 the confusion around receiving gifts …

Sometimes being given a gift can be awkward for anyone; they might be given something they don’t like and have to try and pretend that they do like it. But for people with autism even being given something they do like can be awkward: knowing how to react, what to say, how you should look, and things like that is not something that will come naturally to most autistic people. So why can receiving a gift feel awkward? And what can you do about this?

What do you do and say if someone gives you a gift? This might sound like an easy question to some of you – you just say thank you and then open it. But the fact that you are meant to say thank you is one of those unwritten rules that can be so hard for people with autism, and they might just not think so say thanks. This might be even more likely if the gift is not given on their birthday, but is a random gift. They are not in the mindset of being given something, and it will take them by surprise, and saying thank you just might not occur to them. That’s not because they are being rude, it`s just because saying thank you is not something that is automatic to them as it might be to someone who is not autistic. I know that when I was younger often I would not think to say thank you without being prompted, and once someone had pushed me to say it I would often feel embarrassed, and try and get out of saying it.

But even now that I do know to say thank you I still find it hard on Christmas morning to know if I should say thank you after each gift, or just once at the end. Should I say thank you after a big gift, but at the end if its just a few small things? Would it be odd to thank someone after each gift if you are sat next to them and opening the gifts one by one? Or is it rude to not say anything? Does it matter? I genuinely do not know.

I tend to say thank you at the end. I open anything I happen to get and then thank whoever gave it to me once everything is open. But even then I feel unsure. How long should I look at each thing for? I am going to spend a lot of time looking at them in detail later on, but is it OK to just turn something over in your hands once and put it to one side after someone has spent money on it? Even if you plan to look at it later on? Again I am not sure. I tend to do this, but I do not know if it’s the right thing to do or not.

Added to that for me – and I am sure for other autistic people – is the fact that it can be hard at times for people to read my face, and tell how happy or not I might be about whatever they have given to me, and even when I speak my voice may well be flat. I might look up with a blank face and say in a none-too-excited voice that I am very happy with what I have been given. It would be hard to blame someone if they though I was lying about that. Lots of autistic people say that they find it hard to put emotions in their face or voice – that’s not to say they will not be there from time to time, it`s just hard for us to force emotion to be visible.

There is also the fact that once someone has given you something you are no longer in the background; you become the centre of attention for a while as people watch to see how you will react. This in turn makes you think more about how you react, and makes you doubt and second-guess yourself more.

Like everything in life there is an unwritten etiquette to being given gifts, and like all unwritten rules they can be hard for autistic to people to understand. What I tend to do when I am given a gift is to say thank you once I have been given it, and again after I have opened it. If it’s a birthday or Christmas I will open them all then say thank you after that. I don’t know if this is the right thing to do, and it`s hard to really ever be able to tell; as with a lot of things you just need to do what you think is right, or what comes naturally to you. Being given a gift is meant to be a fun thing, and whoever is giving it to you most likely would not want to think of you being worried about what you are saying or doing in response.

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

AUTISM: when you plan for a change that doesn`t happen …

It’s a well known fact that change is hard for people with autism. If we are going to cope well with it we need to spend time planning for it and be ready well in advance. But what if the time comes and in fact things do not change as we thought they would? Is that a good thing, and can we just get on with our old routine as if nothing has happened? I cant speak for everyone, but for me the answer to this is No. If I have spent days or weeks planning for a change, and going over it again and again in my head, and then the moment comes and I am told it is not happening that will throw me even more than the original change would have done. I can give you a recent example of this, and attempt at least to explain why it impacts on me in the way that it does.

Last month my Mum was due to go in to hospital for surgery. She would have been in for a few days but then after she came out she would have needed looking after for quite sometime. Things would have been very different; I would have been doing a lot of the jobs, we would not have been getting as much writing and ASK-PERGERS?social media done, and my Dad would have been coming around more. While none of this is bad in itself it would have been different, and therefore I needed time to plan it and get used to the idea in my head. We talked it over a lot, planned what time I might get up, what time I might do the jobs around the house, how we might still get some writing and editing done, what I might make to eat, and just about everything else. We knew we had to plan otherwise we were leaving ourselves open to things going wrong. As far as we knew we had everything planned and set up to deal with the change that my Mum going in to hospital would bring – only she ended up not going in.

I should point out that we did know her operation might not go ahead, and in fact I was not at all shocked when I got the text from her a few hours after she had gone to the admissions unit telling me there were no beds, and she had to come home. It’s just one of those things that can happen, and has been happening more and more lately. But even though none of us were surprised at this change of plans it did put us in a strange place. We were all ready for things to change; for the normal routine to be put on hold for a while and a new routine to take its place, and now none of this was going to happen.

So what is meant to happen in this or similar situations? Are you just meant to wake up the next day and get on with your normal routine – that thing you have been telling yourself for weeks you wont be able to do. For me it does not work like that; it has been a month since my Mum was meant to go in to hospital, and I don’t think we have really got back to any kind of normal routine with work, the house, going out or anything since then. That’s not to say we have not done anything productive, but we have not done it in a routined way. We spent so long getting in to the mindset that our routine was going to change that we have been unable to change back, and get in to our old routine when there was no need for change.

I don’t know about anyone else with autism, but I can`t plan for two possible outcomes in a situation like this. I can plan for the change of routine, but that takes so much planning, and so much time to get used to I don’t have any space left to make a real plan for what will happen if that change does not take place. Just looking at this one situation, how can you make a proper plan for something that is so uncertain? It’s OK to know in the back of your mind the change might not take place, the operation might be cancelled, but what then? When will it be rearranged for? A week? Two weeks? A month? Will there be a set date for it? Or will it just be when ever they can fit it in? All these things would need a plan of their own, but we have no way of knowing which one we would be planning for until after the operation was cancelled. What about things that we decided not to do as Mum would be in hospital? Do we plan to do them now that she is not going to be in? Or would it be best to just leave them?

For me it’s too much to think about and too uncertain to plan for. I can plan for a change to my routine – even though that is hard enough – but I cant make any real plans for a change to the change. I just have to deal with that as and when it happens. But that is not easy to do; not knowing what is meant to be happening or when tends to lead to nothing or not much getting done, and the stress of this added to the stress of the change can lead to meltdowns. This has been the case over the last few weeks, and I am not to sure what we could have done to prevent it. As I say planning for something so uncertain is hard to do, and there is something of a feeling that with so much change back and forth meltdowns were bound to happen.

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

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

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

Inspiration Porn – an autistic point of view

Autistic people, and disabled people as a whole are not here to inspire you. They do not live their lives so that it can be filmed, put to an uplifting sound track and posted on Facebook. Most of you should know this, and you might even be nodding along to this blog, but it’s amazing how many people fall in to the trap of re-posting what has become known as “Inspiration Porn”.  But what is Inspiration Porn?  And why is it an issue for disabled people?

First of all what is inspiration porn? From what I can find online Stella Young the comedian, journalist and disability rights activist was the first to use to term ”Inspiration Porn” back in 2012. It refers to stories where someone with a disability is called inspirational for doing normal, everyday things just because of their disability. Think of someone using a wheel chair being approached by a stranger in the street, and told they are an inspiration. Then imagine that same stranger takes a photo to tweet, or writes a post on Facebook about what an inspiration this disabled person is.

So why is this so bad? Well inspiration by its very definition means being inspired to do something, or to feel something. But mostly you would say you were inspired if you saw, read or heard something that then pushed you on to go and do something yourself. But the word inspiration in terms of inspiration porn is used in a very strange way. Think “Autistic person gets date to prom” what has that inspired anyone to do? Is it in terms of “Well if someone with autism can get a date why can’t I?” Just break it down and think for a second. What’s the inspiration here? Someone with a disability did something day-to-day. Not only is that a headline, but it’s going to go viral and become world news. If you’re non-disabled try and put yourself in that story. You wake up and go to the shops. When you get home from work that night you log on to twitter only to find out that someone noticed you out shopping, and was so inspired, so moved by watching you decide what flavour crisps you wanted that they just had to take a picture and tweet it out. In fact what you did was so fantastic that thousands of people re-tweeted it. Makes no sense right? Well run through the same story again only this time pretend you`re autistic, or you have one arm. It could be anything. Do you think you would be any less shocked or perplexed to see yourself all over twitter?

The bottom line here is that disabled people are just living their lives. Yes some things might be hard for them to do, and yes doing day-to-day stuff might feel like a big deal to some people. But that’s their life. They are not doing it to try and make other non-disabled people feel better about themselves. If you are disabled and you feel like you might never be able to do something, and then you see someone with the same disability as you doing it sure that might inspire you. But it would inspire you to do something, not just post about it online. The idea behind it seems to be that disabled people just sit in a room all day doing nothing. If they do anything outside of this it must be a huge deal, and worth taking time out of your day to admire. Disabled people are not here to act as inspiration, but what makes it even worse, in my eyes at least, is that people are not even inspired to do anything. It’s not as if the people who share these stories go out and do something – they just talk about it, post about it, and then forget about it. That is not on any level inspiration.

Also let’s think about how these stories and images tend to be played-out. More often than not it’s not even the disabled person who is given the headlines. It’s “Cheerleader asked boy with Downs Syndrome to prom” Or “Staff member helps man with autism in busy shop.” In other words “Girl asked boy out on date.” “Staff member does what they get paid to do.” But as soon as you bring disability in to it their acts are elevated to almost hero status. The girl did not ask any old boy to the prom, no she took it upon herself to ask the disabled boy. And that act should inspire you to …well I am not sure? And the staff member doing their job, nope, a hero because even though they are paid to deal with the public someone with autism is clearly outside of that right?

People share stories like this because they want to feel there is good in the world. Because they know how much bad stuff happens to disabled people and how hard life can sometimes be for everyone, disabled or not. But this is not the way to show how good the world can be. This is just showing people living their lives, or doing their jobs. It’s like saying “look at them, they`re disabled but they can still get out of bed, and live with themselves. Even like that. My life is not so bad. I should go to the gym tonight.”  Just try and think before you share something like this again. Think about what it is, and what the real point of it is. Think has it inspired you to do anything? And if so why? Because the truth is most, if not all, disabled people hate inspiration porn. We don’t want it, it gives us nothing, and yet it focuses on us. And all so someone else can feel happy for a few seconds when they hit share.

Stella Youngs TED talk: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

A Book Launch, A Thunderstorm, and an Overload.

There has not been a blog up on here for quite some time, and I feel I should explain why.  As some of you know it’s been a pretty busy few weeks. I had the launch for my new book last week and my time has been taken up with planning for that, and dealing with the overload after the event.

A book launch in itself is an odd thing; you write the book, send it off to the publisher, and then spend months waiting, and then editing, and then you are told it`s going to come out, and you just wait some more. A few months later there is the book. And more than a year after you started working on it, and almost a year from when you knew it was coming out, you have an event to mark the beginning of something.

We never had a launch event for any of our other books, but the publisher got in contact with us and told us we could set one up for my new book if we wanted. Even though we were unsure of what to do we said yes, and went about trying to set up our first ever book launch.  And all things considered it went very well. We of course were unsure what to do, but we managed to book a room, get flyers printed out and sort out food and drinks. Even though we ended up with a lot of food left over! We ordered books from the publisher, and advertised the event on twitter and Facebook. I can’t say we got everything right, as I say there was far too much food. But we got things as right as we were able. Yet on the night it still looked as if the launch was going to be a failure. We got there two hours before it was due to start to get everything set up, and about half an hour later, as we were setting up the food tables it started to rain. Within half an hour it was pouring down with rain, and a short while after that the thunder and lightning started. It just so happened that the worst storm to hit Manchester for a long time happened to hit on that night. We carried on setting up, but we all felt that the weather was bound to put some people off. We found out later that some of the trams had stopped running and some roads where so full of water they were impassable.  The weather calmed down somewhat in the twenty minutes or so before we opened the doors, but it was still a bit of a surprise to see over thirty people crowd in to the room. Thinking about how bad the weather was, and how easy it would have been for them to stay indoors, I am very glad they came out, and ensured that the launch was not a failure.

The book launch only ran for an hour and a half and felt like it was over in no time. I talked about the book and my reasons for writing it, and then sat behind a table selling and signing books. I was happy to see how well the book sold, and I hope it will be of use to everyone who bought a copy. As I said in my talk that is the main aim of the book; to help both the professionals who read it, and the autistic people they work with.

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Even though it went well I was very overloaded from it, and still am to some degree. This is why I am only now sitting down to write about the event. I am sure most of you know how hard an overload can be. It’s not the same as being tired, and I think it must be hard for anyone who is not autistic to fully understand how much an event like this can impact on someone who is. Not just standing up and giving the talk, but also all the one-on-one talking that came after.

Seeing as this was our first book launch and the weather was against us I feel it went as well as it could have. Everyone seemed to enjoy themselves. I had fun and sold quite a few books so all-in-all it could not have gone much better.  I don’t know if or when there will be a new book, and a new launch, but hopefully there will be another one sometime soon.  But with it being over at least for now I plan to get back to my normal writing and blogging.

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

9781849057080

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

Twitter https://twitter.com/ASKPERGERS

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

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