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How Dyslexia impacts on my writing and my confidence.

Most of what I write on this blog tends to be about autism, but I wanted to take the time to talk a bit about my dyslexia, and how it impacts on my work. I have written about having dyslexia in the past, but to tell the truth it’s not something I think about all that often. I get so caught up with my autism, and how that impacts on my day to day life that I tend to forget that I am dyslexic and dyspraxic too. However, at times I cannot help but think about it. When I work I am keenly aware of my dyslexia, and how much it slows me down and frustrates me.

My work is my writing; I write blogs, and articles about autism and disability in general, and, as yet unpublished, short stories and novels. I have co-written and published two autism books as well as writing my own autism-related book, and had that published last year. Like everyone who writes I go through times in my life where it is hard to write, and where I don’t get much work done at all. But most days I write something, and that has been the case for over ten years now, and yet I can’t spell or hand-write. If I were to be tested I don’t know what level my spelling would be at, but I know it would be poor. There are very few words I can actually spell right first time, and when it comes to spelling out loud that number goes down even more. When I type most of the words I get right I do so without thinking; my fingers just hit the keys. If I had to tell you out loud how to spell half the words I do manage to get right, I would not have a clue.

It will be hard for a reader to fully understand quite how bad my spelling is; by the time you read this blog it will have been spell-checked and edited by my Mum, so most if not all of the spelling or grammar mistakes will be gone. I could publish a blog without any spell-check or editing for you to get a full idea of what I mean, but I don’t think you would be able to read it. A lot of the time the inbuilt spell-checker does not even know what I am trying to type. It changes the word to what it thinks it is meant to be; sometimes to a word that is so close to being right that I don’t even notice it`s wrong until someone points it out – other times to seemingly random words. When this happens I have to resort to googling a word (as Google seems to have more luck working out what I am trying to say) and pasting it in to whatever it is I am writing.

My spelling has always been poor, and I am sure anyone who is dyslexic knows that feeling of frustration when you try over and over again to spell a word without getting any closer. But there is an added level of frustration when it impacts on what I do for fun, and my work. I write at a much slower pace than I would if I did not have to worry about my spelling, but its more than that – it’s the lack of confidence in my own work. A lot of the time I do not even feel like I can put a tweet out there without having someone else check it first to make sure I haven`t spelt everything wrong. I can’t ever see myself feeling confident enough to write a blog and publish it without having my Mum, or someone else check it over first. When writing is what you do it can be unbelievably frustrating to know that you are reliant on someone else to make even the most basic of your work understandable. I am a published author, and yet I do not even feel confident to send out a tweet on my own. As for making notes or hand-writing anything, there is next to no point in me even trying to do this anymore. I cannot even read my own handwriting! I have to type and I can type quite fast, so things now are a lot better than they were a few years ago, but there is still this underlying feeling of frustration at my poor spelling.

I don’t want this blog to be full of self-pity, but I felt that I needed to point out how much extra work myself, and fellow dyslexic writers have to put in to get our work ready to be read. There is a part of me which thinks that even with some of the difficulties that come with my autism, it’s my dyslexia that gets me down the most. That’s what makes it hard for me to do what I love, and that’s a huge part of what makes me so reliant on other people when it comes to my work. And even though I have gotten so used to it I might not think of it much, it’s the effects of my dyslexia that keep impacting on me day to day.

I don’t have any practical advice to leave you with in this blog as it was intended more as a way for me to vent some frustration, and explain how hard writing these blogs can be. But I might try and put together a list of tips and things that have helped me over the years, as well as things I might try in the future, and post that at some point.

You can find my new book: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34253.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

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Why are we still hearing that more Males than Females are Autistic?

Women and autism has long been a controversial topic. For years many women were diagnosed as schizophrenic, depressed or just ignored instead of being given a diagnosis of autism. But now a lot of these women are taking matters in to their own hands, and forcing the world to look at autistic women and girls in a new light. You only have to spend five minutes on Twitter looking through their stories to see the common thread. They had a child/friend/husband with autism, or just read up on it, and felt that perhaps they were autistic, and then went to a professional to have that confirmed, and were either flat-out refused, or were told that they could not be autistic because, they had friends, children or could talk to the Dr/psychologist, and sent away again. A few years down the line the strain of living with undiagnosed autism, while trying to act and live like a non-autistic person, becomes too much, and they have an autistic crash. There are a lot of cases of late diagnoses or self-diagnosis, and as I say most of the stories follow a similar path. It should by now be clear to us that women and girls are autistic too, and that we need to take notice of this, and make sure that they can get the acknowledgement they need earlier in life. But there is one statement that is still thrown around far too much in my view, and perhaps it is one of the things holding us back.

`There are far more autistic males than females`.

Think about that for a second. It’s something I can recall hearing years ago, before anyone worked out a female profile for autism, and before the boom in autistic women coming out, and making the professionals sit up and take notice. But why do I still see it so much today? We know now that autism does not just present itself in one way. Now I don’t believe in a female/male profile per-say, as I know some men who would fit the so-called female profile, who therefore went undiagnosed themselves for years. That’s not to say that the female profile has not been a huge help and that a lot of women do not fit in to it, it’s just to say that we want to keep learning more and changing our ideas, instead of getting stuck in a whole new ridged way of thinking about things. There are a lot of autistic women out there now who would never have been diagnosed without the `female profile` though, and what it does show us is how blinkered professionals have been when it comes to giving out diagnoses of autism. When you think that we have known about autism for less than one hundred years, it seems strange that we should set such clear, unmoving statements as `There are far more autistic males than females. `

Let’s look at it this way – we hear some people in the media talk about an `autism epidemic` and about how `there was no such thing as autism in the past. ` We know that this is a silly argument. We found out what autism is, and the more we learn about it the more we can notice it in people. Therefore more people are being diagnosed as autistic. It’s not hard to work out.  And I think the same goes for the statement about more men being autistic than women, or boys than girls. We might have more males on the books diagnosed as autistic than females, but I would be willing to bet that this is only down to the fact that most of the women or girls who are diagnosed have to fight for years to get that diagnoses. It’s as if the system said “Women and girls cannot be autistic.” and then made sure it was so, and that fact would remain true by refusing to diagnose them for years. When we look at the amount of women who have been forced to the point of having an autistic crash, and losing their jobs, as well as suffering from related mental health issues due to this, it is clear that something must change.

Perhaps the first step in this would be to stop saying that more males are autistic than females, and just stop worrying about those numbers. Assess everyone on their own, and not as a male or female, and see if they are autistic.  Don’t let their gender play a part in your thinking.  We know that autism can present in different ways: sometimes in outbursts, sometimes in being quiet, sometimes in being unable to understand emotions, sometimes in being too empathetic to others to the point of neglecting yourself, and these points, along with other things, are what we should think of when we think of autism. Not one set idea that only applies to one small section of society.

You can find my new book: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34253.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

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How Sensory Overload Impacts on Autistic People Part two – The Impact on my Body.

In my last blog I talked a bit about how doing events/talks, and going to do any kind of work can have a negative impact on my mind. I explained how the build-up of anxiety, added to the lack of time to rest after an event, can leave me unable to think clearly, and how it can take me weeks to even be able to pick what film to watch and to rest, let alone be able to work or go out again. But the impact of a stress and anxiety build-up and overload is not just mental, and there is also a physical side to it. I want to use this blog to speak about that, and explain what happens and how bad the physical effects of stress, and anxiety can be.

As I said in my last blog I did three events in November, all of which included talking to an audience, one-on-one chats, and busy rooms. There were build-ups of stress beforehand, and not much time to recover afterwards. But before I talk too much about these events and their impact I would like to go back, and talk about my book launch. On the night of the launch itself I was fine. I felt good and fully expected to feel fine the next day as well. And when I woke up I did feel fine, but as the day went on I started to feel worse and worse. By around eight at night my stomach felt as if it was being pulled and twisted from the inside. It felt as if it were piled with stones, and I could not even stay in one place for more than a few seconds before I needed to move to try and stop the pain building up too much. I knew full-well that I was going to be sick, and sure enough I was. In fact I was up till after three in the morning throwing up. The next day I was fine, I ate plenty and did not feel ill in the least. At the time I knew, or at least thought, that it must be some kind of physical release of all the stress that had built up before and during the event. As I said in my last blog I was not aware of feeling stressed before events, but I guess it must have been there inside – impacting on me whether I felt it or not.

I did not feel anything of the sort after the first event of last month, or the second, but the morning after the third event there it was again. That feeling of carrying around a pile of bricks in my gut. Pain and discomfort, but more than that. There was a sense of hopelessness. I knew then that the feeling was without any doubt due to the stress of the work I had been doing. It was a direct result of me going out and selling my books and doing talks. It’s hard to explain my feelings, perhaps pain most of all, to people in a way that they can understand, so you might think I am making a big deal out of a bit of stomach ache. But I have been sick and had a bad stomach plenty of times in the past, and I can tell you that this stress induced stomach pain was much, much worse than any I have ever had before.

There was a point, when I was bent over in pain the morning after the third event, where I began to wonder if I would be able to keep on doing that kind of work. Would I be able to commit to planning for an event knowing how I would be left feeling the day after? And more than that, was it worth it? I was in a huge amount of pain and I felt miserable. I should point out that despite what you might think I don’t often complain of pain. For me to react to pain at all it has to get to a point that most others would find hard to cope with. More than once in my life I have gone to see a doctor with an infection in my foot, or ear after weeks of saying only that “It’s a bit sore” to be told that it’s one of the worst they have seen, and they are shocked that I could even stand the pain of putting my shoe on, and walking in to the building. The point being that when pain is bad enough to make me feel miserable you know it must be bad.   So I have to admit I spent that morning feeling sorry for myself. But as time passed the pain began to grow less and less. By that afternoon I was able to relax and watch a film.

I realised after this that I would have to plan events better, and try to do something to stop the onset of pain like this again. I am sure that it is due to a build-up of stress. The stress builds up before the events without me feeling it, and once they are over and done with I feel the full force of the stress in a physical as well as mental form.

I know now that I need to make plans before events to try and stop this from happening, but I don’t know what will work, and the only way to find out will be to test things out. And that means that I might have to try a few things that do not work, and find myself in pain once again.

Because pain, or at least physical discomfort, is nothing new to me – I would say I feel uncomfortable much more often than I feel comfortable, at least when I am outside anyway – If I know I am going out, even if it’s to do something I enjoy, I will have pain in my gut, feel hot and sweaty, and have a tight chest sometimes for hours. And it’s not something that I ever get used to. When I used to go to Judo I would feel like that for an hour or so before going out, then after a few months of going, when most people would be getting used to it, I would start feeling that way in the afternoons, then in the mornings, and in the end I felt that way from the morning of the day before I was due to go out! In my head I wanted to go, I knew I would enjoy it, and as soon as I got there and got going I did enjoy it. But still I could spend up to twenty four hours in physical discomfort just because I was due to go out.  And for this reason I no longer go to judo.

So I don’t know what will work to rid myself of the pain and discomfort that stress, anxiety and sensory overload, can cause, but I want to do all I can to deal with this issue so that I can get out there and do my talks, and sell my book without feeling again like it might not be worth it.

Do any of you suffer from the physical symptoms of stress and anxiety?  Or the physical or emotional impact of sensory overload? If so do you have any tips or hints as to how to deal with them?

You can find my new book: 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

 

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How Sensory Overload Impacts on Autistic People Part One – The Impact on my Mind.

It has been quite a while since I wrote a blog, and now that I am writing one it is about something that happened at the end of last month. Now part of that might be due to the fact that this month is December, and as I am sure most of you will know this can be a hard month for autistic people. It is all change, and routine and normal life can go somewhat out of the window. But we are still only in early December, and the bulk of why I have not been writing much, if anything, this month is to do with the events of November. The best thing for me to do is to explain what I did in November, and why that is still impacting on me now.

In November I went to three autism events. Twice as a speaker, and once just to man a stall selling copies of my new book. Now I should say before I go on that I enjoyed all three events, and was happy to go to them. Nothing in this blog is meant to be a comment on those events themselves. But it is worth looking at why I, and other autistic people, can find events like these so hard. And some of the particular after-effects that I have had to deal with.

 

  • Build up: I don’t feel nervous or worried about the events beforehand, or at least not that I am aware of. But I know the feelings must be there somewhere. I find it hard to focus on doing work or even doing something relaxing like watching a film if I know I am going to have to go to a busy event in the next few days. Even though I might not be aware of this build-up of stress and anxiety, it can take its toll.
  • Overload: Events such as the ones I went to, full of stalls and guest speakers, tend to draw quite a lot of people in. They are noisy, full of people moving around, and all in all very difficult places to spend much time in if you have sensory issues. Perhaps I must take my share of the blame for not going outside and having a break from time to time, but once I get started on something I find hard I like to just get it all done. If I take a break to go somewhere quiet there is a high risk that I might not be able to go back in, and get on with the work I need to do. So I end up spending anywhere from two to five hours in a busy, noisy, and overwhelming environment. Again this leads to a build-up of stress and anxiety.
  • One-on-one talking: When I am at an event, be it on a stall for ASK-PERGERS? or doing a talk, I end up with people chatting to me. Now this is a good thing: it gives me a chance to sell my book, and also to make contacts. Plus the whole point of what we do is to help other autistic people, or their families by giving advice, so a chance to talk is good. But it does take it out of me. It’s fair to say that in a normal month I might chat one-on-one with five people at most. Now this is partly due to me not being at university at the moment, and if I were it might be more. But five is about average for this year. But at an event like this I might talk one-on-one to fifteen people in the space of a few hours. If I do two or three events in a month it might be something like fifty people over the space of those events. All that one-on-one talking wears me out, and pushes me more and more in to overload.
  • Not much time to recover: If I do a few events in a month then I don’t have any real time to come down from one before I have to start planning for the next. It might take me a week or more to fully get back to normal after something like this, but of course I do not have that time if I have more events to go to.

So what does this all mean? Well it leads to a build-up of stress and anxiety that can only truly come out when I am done with all the events I have planned. Not that it does not affect me in-between events. It does. Last month I was so overloaded that I found it hard to do anything other than the events I went to. When I talk about that a lot of non-autistic people nod their head and say something like “Oh yes I will need to crash out for a bit too.” Or “I get tired as well.” They do not, nor could they fully understand what an overload is. If your lap top overheats and shuts down because it cannot cope with the overload to its system it can’t do anything. It just crashes and goes blank. And I find it to be very much the same for myself. If I am overloaded I can’t do anything, not even things that relax me. I can’t pick which film to watch, and in fact I don’t even want to watch anything. I can’t sit and read, or do anything else fun that might relax me. I spend most of the day just walking from room to room not knowing what to do, and doing nothing. It’s not a case of going “I am tired now, better just watch some TV then I will feel fine.” I might be unable to do anything, and I do mean anything, for days, or if it’s really bad even weeks. The truth is November was such a comparatively busy month for me that it took me quite a long time to come back from the overload. It’s really only this past week that I have been able to start doing things of any real worth, and like I say this is the first writing I have done this month.

I do want to do more work, and my hope is as I do it I will become more used to it, but also work out ways to minimize the impact of the overload. But I wanted to take the time to try and explain to you how even though I might be more than able to stand up on a stage for twenty minutes and do a talk, or man a stall for five hours, the unseen impact of this can last for days, or even weeks.

I also wanted to take the time to write about the physical impact the build-up of anxiety can have, but I feel that should be a full blog on its own. So that should be out later this week, or early next week.

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

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I, Daniel Blake: why this film is so important …

I, Daniel Blake is the new film by acclaimed director, Ken Loach. It stars Dave Johns as the title character, a joiner from the north east of England who is now unable to work following a heart attack on the job.  And Hayley Squires as a young single mother (Katie) who he befriends after he takes her side in an argument at the job centre. The film follows his attempts to help Katie and her children as they adjust to their new life after being forced to move from London, and away from everyone and everything they know, to the only house that is available for them.  At the same time he is trying to navigate his way through a benefits system that seems to be set up to push him back at every turn.

On the surface this is a simple film; an older man who never got the chance to have a family meets up with a young Mum and two kids, and does all the things with and for them that he would have for his own family. But the truth is that the film is about so much more than this.  It is, at its core, a film about people vs. state. About how faceless bureaucracy, and red-tape grind normal men and woman down to the point where they no longer have even a shred of self-respect. A film about how the systems that are meant to help people lack the common sense, or the compassion to even acknowledge when someone is in need.

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It is a deeply important film, and that fact in itself speaks volumes. Fifty years ago Ken Loach made Cathy Come Home. A film about a young woman, who along with her two young children, is forced from house to house by a system that is rigged against her.  At times moving far away from any family to the only accommodation they are willing to give her – failed by people who would pass her from one department to the next until she had no clue what was going on. She spent time in a homeless shelter, and found herself brought to her knees by a system that was meant to help, but instead acted against her, and against common sense at every turn.

The fact that fifty years on Ken Loach can make a film about people forced to move from their homes, in fact to different cities, at the whim of the councils, and about people being failed and lied to by a system meant to help them, is shocking. And it should shock you. It might be that you come out of watching this film thinking it is being heavy-handed, that it`s exaggerating.  Well let me tell you that as someone who has years’ worth of experience dealing with the benefits agency, that’s just not true. Everything about this film rang true to me. The hours spent waiting on the phone, medical assessments carried out by people who have no clue what they are talking about, and yes, even people who are being told by their Drs that going back to work would be bad for their health – or perhaps even fatal – being forced to look for a job. I am autistic and can’t speak on the phone myself but I have spent hours watching my Mum deal with the benefits agencies and seen first-hand how much stress and anxiety this causes her. That being said I am lucky, I have someone who will make the phone calls that I myself cannot make.  Lots of autistic people are not this lucky and find themselves alone. Unable to get the help they need they end up on the street, or even starving to death.

I wish that I could say the film does exaggerate, but no.  It is a true and tragic portrait of modern day England for a lot of people.

I won’t go in to the film`s ending, or people’s reaction to it, as I think it’s only fair to let you experience these for yourself.  But what I will say is that as I left the screening people were talking. Not about the normal things people might casually chat about when leaving a cinema. They were talking about their own lives, about memories and feelings the film had dragged up. There were voices raised in anger, and stories being told of past injustices, because that’s the point of this film. Yes we are watching Daniel Blake and the events of his life, but he could be anyone. A man who has worked all his life, and done no harm to anyone can fall prey to the system – so could you, and so could your friends, or neighbours.

As I watched Daniel toil against the system I could recognize all that he went through, and understand how he felt.

This is an important film. Not because it deals with a tragedy from years ago, or atrocities committed in some far off land.  No, it`s important because it deals with what is happening now – in this county, and in the very streets where we live. The sad thing is that a lot of people who might be affected by the issues in this film probably could not afford the transport costs, or admission fees to go and see it.

I would urge anyone and everyone who can to go and see it – not only because it is a very well made and moving film, but because it tells a story that means something. There is no drama for the sake of drama, or forced emotions.  The drama and emotion come from the brutal and unflinching depiction of real life.

Much like Cathy Come Home did for the 1960s I, Daniel Blake shines a light on a corrupt and hopeless system that is failing those most in need of its help. Yes it is an unashamedly political film, but why should it not be? It tells a story that needs to be told, and it does so while still remaining a moving and effective piece of cinema. One of the most important films of recent years, and one everyone should watch if they have the chance – especially politicians and those working within the benefits system.

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

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Post Halloween – why November can be such a difficult month for autistic people.

There has been a blog on this site before which talked about how hard Halloween can be for autistic people, and gave some tips for how to cope with this.  But what I want to talk about today is the weeks following Halloween. It`s easy to think that because the event itself is over that’s the end of it, but the truth is that with autism overloads and meltdowns often don’t kick in until much later. It might be a week or two after Halloween that all the change and sensory input finally catches up to someone. By this time the people around them, and perhaps the autistic person themselves, is no longer thinking about Halloween, and does not make the connection. But it is worth keeping in mind that any overload or meltdowns can be due to the impact of something that happened weeks before.

It’s not so easy for someone with autism to just change their routine overnight, and that’s what Halloween requires a lot of the time. Everything changes for a few days as you eat different food, and people’s houses take on a different look (if they decorate them). And along with this there is all the sensory input from children knocking at the door or running around outside doing trick or treat. You can’t just wake up the next day and be over that.

It might be that you take a few days to ease back in to the normal routine of things.  But this is where it becomes a bit tricky because things don’t quite go back to normal at all. November is a strange month anyway; there is Halloween leading in to it then Bonfire Night, and after that people start the count-down to Christmas. Fireworks go off all the time, and there are a lot more people out and about on the streets. It’s a month where you are meant to just get on with your normal life, and yet the world around you is changed. Everyone starts to talk about Christmas, and it feels as if things are changing all the time. Or at least everyone is getting ready for them to change. As I say fireworks start going off sometime in October, and don’t stop until January. It might be that some people with autism enjoy fireworks, and like going out to see them, but for a lot of autistic people having them going off most nights, and even in the daytime is too much. It`s added sensory input that comes at random times, and can be extremely stressful for autistic people.

It is important to remember that while November is meant to be a normal month, it is far from it. Part of it is spent getting over the impact of Halloween, and all the change/sensory overload that can come with this, and part of it is spent anticipating the change, and stress that can come with Christmas. Even if you do work around these two things it might be worth taking the time to talk about the month of November itself with your autistic loved one, or give it some thought if you are autistic yourself. How do you get around the fact that it is basically a month spent dealing with the events of the month before, and the anticipation of events to come in the month after?

Writing about this and planning might be the key; write down what will be different about November, for example fireworks, and Christmas decorations in shops. Write about what the positives of this change might be, and also the negatives. And try to see the last three months of the year as one big time of change, and sensory stimuli. Don’t look at it as one big time of change, then a break, and then a second change.

Even if you just take one part of November – the fireworks – and think about the impact they can have on autistic people, you can see why it can be such a hard time of year.  Loud noises can be enough to send some autistic people in to melt down, and even if this is not the case the build-up of noise/lights plus the unpredictable nature of them can take its toll. It might be worth investing in some head phones either to play music, or just to block out sound. You might not want to, or be able to keep these on all the time, but if you know fireworks get worse after it goes dark then you could have them to put on at this time.

November is a hard month. Perhaps harder than October or December due to the fact that everyone around you wants you to get on with it as if it were just a normal month. But keep doing whatever works for you on Halloween, or start doing whatever helps you get through Christmas early on. Talking, writing things down, planning, talking about what change will happen, and what it means as well as just being aware that things might be hard can all help. I know myself that even though the last three months of the year can be a lot of fun, they can also be a lot of hard work. Of course everything changes again in January but that is a blog for another time!

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

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AUTISM: when you are so overloaded that you can`t even do your favourite thing …

In the past month I have done three talks about my book. One at the launch for the book, and two more for other events where I talked about my book, and autism. Unlike a lot of people I enjoy doing public speaking, and I had fun doing the talks and selling my books afterwards.  I knew even as I was doing them that it would take a lot of out me. But I have to admit I underestimated quite how long it would take me to recover. I had thought that a few days of rest might be OK, and that I could be back to normal after that, but the truth is it’s taken me about two weeks to feel like I can get back to any kind of normal routine. So why is this?  And what kind of impact has it had on me?

Let me start by saying this. No one who is not autistic can understand sensory and emotional overload. People try, and they do mean well, but saying things like “I will be pretty tired too.” Or “You will just need to crash out in front of the telly tonight.” just show how little they do understand. When you have an overload sometimes you’re so worn out you can’t even rest. You can’t watch anything, you can’t read and you can’t even make a basic decision – sometimes for days on end. I love watching films, and when I can I watch a film a day. So when I can’t watch films that is a sign that I am overloaded, and need to give up on the idea of doing anything.

This was taken to something of an extreme with my last overload. Each year since I was around fourteen I have been to a horror film festival. For the first few years I only went to see a few films, but for the last five years or so I have gone to watch every film over the four days of the festival. It’s one of the few things in the year that I do look forward to doing, and one of the few time I can bring myself to go out four days on the run. Even though I always have a good time I always feel overloaded by the end, and need at least a week to relax, and do nothing after having been out and about so much.

Normally I would make sure I was not going out the week before the festival starts, but this year I decided to go and do a talk just two days before it was meant to start. I can’t say for sure why I thought this would be a good idea. I think I just got so caught up in the fun of doing talks, and selling books that I did not stop to think too much about the after-effect. But then on the day the festival was due to start the last thing I wanted to do was to go out. All I wanted to do was stay inside and do nothing. But I forced myself to go out for the first night, and watched three good films. Even though I enjoyed the films, I knew when I got home that I was feeling much more overloaded than I normally would at this point in the festival. And when I got up the next morning I knew that going back out would not be a good idea. I don’t want to make things sound over dramatic, and it’s not the worst thing in the world by any means – I missed watching a few films, that’s all. But the point is that I was unable to do something that I enjoy doing, and something that I actively make sure I do each year.

And this is where people not understanding overload comes in. How to explain to someone something you can’t fully understand, or find the words for yourself? How do you explain that going out and doing something you enjoy, something you would even find fun when you`re there, would in fact be bad for you?

When you`re  overloaded, or at least when I am (I can’t speak for everyone with autism) it’s a case of not being able to do anything, and almost drifting around all day just waiting for time to pass so that the overload will fade, and I can get back on with my life. It might take me all day just to decide to watch a film then another hour to pick one to put on. And the likelihood is even if I did I would not be able to get in to it.  It’s as if your mind stops working as it should; you can’t think clearly, or even decide anything for yourself.  And as I say this can last for up to a week normally.

On top of that I felt angry at myself for not planning as I should have done. I ended up not going to the festival and staying at home over the weekend instead. This was the right thing to do, and I am glad that I decided to do it, but I still feel as if I should have known better than to end up in that situation. Doing a talk and then dealing with all the one-on-one interactions that come with selling books took a lot out of me. More than I thought it would do.  And hopefully I can use the mistakes I made to learn more about myself, overload, and how to plan my work in future.

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

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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

9781849057080

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

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Autism, theft and anxiety …

On Saturday I received a bank statement, and a letter from my bank telling me that their fraud department needed to get in touch with me. They wanted to check if some recent transactions had actually been carried out by me. After looking at my bank statement it became clear that the last five transactions on it were not actually mine. And in fact I had no idea where the money – which amounted to over one thousand pounds – had gone.

Crimes like this are fairly common place, and I wouldn’t normally feel the need to write a blog about something like this, but what did make me want to blog about my experience on Saturday was the fact that the actual crime itself, and any stress or anxiety caused by that, completely paled in to insignificance compared to the stress and anxiety of having to interact with people to get things sorted out. My first thought on seeing that the money was missing was not actually one of concern for what had been taken, it was a feeling of concern and frustration because I knew that even if this were resolved quickly it would still completely ruin my usual Saturday routine. This did turn out to be the case. Me and my Mum decided that the best thing to do was to walk to our local bank and raise the issue with somebody face-to-face so we got ready, and prepared to go out. My anxiety levels rose higher and higher as were getting ready, and walking to the bank. In the back of my head there was a mild anxiety about what would happen to my money, but as I say I assume such crimes happen all the time, and I was pretty confident that I would end up getting the money returned to me. There was still some mild anxiety around this as I wasn’t certain at that point. But that had nothing to do with the rising anxiety and stress. This came solely from the fact that I had no clue what I would need to do, or who I would need to interact with when I reached the bank. Would they be male or female? Young or old? Would we talk in an office? Would they ask me questions I didn’t know the answer to and put me on the spot? I had no clue. I knew that I had no choice but to go to the bank, and in a way I think that helped. There is always an option of course, but I wasn’t going to sit at home and simply let more money be withdrawn from my account. In terms of interaction within the bank it was fairly easy – my Mum did most of the talking – the only challenge being that we had to talk at the counter, and I was keenly aware of people standing behind us. We were advised on what to do and told to return home and call the fraud department immediately. There was an option to use a phone within the bank to do so, but we decided against this. Again it was public, but also I felt it would be impossible to concentrate in a busy environment such as that.

Far from being over, my anxiety levels began to rise even higher as we walked home. I should explain; I don’t speak on the phone, even with family or people I know well. And whenever there is any official business to sort out that can only be dealt with via a phone conversation I give permission for my Mum to speak on my behalf. But as I walked back from the bank I had no clue whether they would need to speak to me, perhaps simply to gain my permission to speak to my Mum, or even if they would insist on talking to me for the entire conversation. It wasn’t just the fact that I might have to speak on the phone, it was the fact that I didn’t know. I didn’t know who I would be speaking to, or what they would be asking me. In the end I did have to speak on the phone, only to answer a few basic questions and give my consent for them to speak to my Mum. This in itself was not an easy experience, but I will go in to more detail in another blog. After that phone conversation everything was resolved. They dealt with it quickly and efficiently and as I say I assume it is something they deal with every day. But the impact of the change of routine, stress and anxiety created on that day are still affecting me even now. I can’t say that it has nothing to do with the money being stolen – that would be silly – but in all honesty I think that is ten percent of the cause. The other ninety percent is to do with uncertainty, social interaction and change of routine.

This is one thing I have always found difficult about my autism; even if I myself react calmly to a situation, and I don’t feel particularly disturbed or distressed by it, there will always be something that comes along with that situation which brings anxiety and stress. I think a lot of people would find it hard to understand how little the theft of the money actually affected me. I assumed even when I saw it was gone that I would get it back, which I have. If you had seen me on Saturday you would have seen somebody who was clearly highly anxious, and no doubt you would have assumed it was due to the theft. But as I say, you would have been wrong.

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

And here`s the link to our new E Book Autism & Animals – the benefits of animals for autistic people https://www.amazon.co.uk/dp/B01GO1N1X6