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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

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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

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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

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My new book and why I wrote it.

I have a new book coming out on the twenty first of this month. It is called Communicating better with People on the Autism Spectrum – 35 things you need to know. This is a pretty self-explanatory title. In the book I list 35 things that I think it is essential for autism professionals to know when they are communicating with autistic people. I wanted to talk a little bit in this blog about where the idea came from, and why I thought it was important to write.

Throughout my life I have had quite a few dealings with professionals. Some of these have been great. They have been essential even to helping me overcome problems, and get the best out of my autism. But increasingly, as I have grown older, I have become more and more frustrated when meeting with so- called autism professionals. I have been faced with a baffling lack of knowledge, concerning even the most basic aspects of autism. I have been in meetings that have run for almost three hours, and over-all been left with a feeling of frustration, disappointment and confusion at the conclusion of these meetings. As I could feel myself getting increasingly angry about these issues I decided to write something to channel that anger and frustration in a way that might be constructive, so I wrote an article for the Guardian to put out in a health and social care blog. The idea being that professionals would read this article and realise some of the things that they could do, or could avoid doing, in order to make life better for people with autism. I wrote two related articles which did well, and received several thousand shares. It also led to me being contacted by my publisher via twitter with a request to write a book that would be an expansion of the article. I was more than happy to do so because to tell the truth I had a lot more that I felt I needed to say on the subject.

When I sat down to write the book I didn’t want to write something that was merely going to criticise professionals, and tell them how bad they are at their jobs. I wanted to write something that could be read by people who are good at what they do, but who understand that as people they may not think of everything, and there is always something to learn; professionals with enough experience to know that they can’t look at things with an autistic mind, and that it is OK to take advice from someone who can. But more than this I wanted to write something that if it got in to the right hands would mean that less autistic people would be left with those feelings of anger,confusion and frustration that I experienced after some of my more unsuccessful meetings with professionals. Because that is the thing, the professional who presided over the three hour meeting for example, was not a bad person. They were newly qualified and probably didn’t understand that I had refused a break an hour in as I assumed it would be a ninety minute meeting as originally planned. Unfortunately the meeting ran over by a significant amount of time. I wasn’t offered another break and there was an incredibly noisy event going on just outside the office in which my meeting was taking place. It was one of the hottest days of the year and I wasn’t offered a drink as the meeting progressed. What makes this even worse is that my Mum had contacted them before we went and requested that I be seen by someone with a good understanding of autism. The meeting itself was shambolic. But my point is that this wasn’t due to the professional themself being vindictive or nasty, it was due to them not understanding. They made mistakes the same as any newly qualified professional would do. It is just that in this kind of job when you make a mistake it is the autistic person who ends up suffering.

So in short, I decided to write this book to help professionals and autistic people. I would like to think that even the best professional can get something from the book, and this might in some way help other autistic people in the future.

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?

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

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

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Autism, Illness and Meltdowns:

The signs are all there – so why can`t I recognise them?

I normally have an outburst before I get ill.  It doesn’t mean I get ill every time I have an outburst, but it does mean that if ever I am coming down with something, in the days before it fully becomes apparent that I am ill, I will have some kind of meltdown or outburst, or at the very least be snappy, and even more short tempered.

I find it hard to recognise when I am feeling ill.  And so where a lot of people would say that they are not feeling too great and perhaps adjust what they were doing to suit that, I just carry on as normal and my negative feelings come out in other ways.  It might seem strange; how can you not know if you are feeling ill?  But what you have to understand is that with autism comes stress and anxiety, and with stress and anxiety come physical traits that can be similar to being ill: stomach pains, headaches, and tightness of the chest, nausea and dizziness.  These are all common, sometimes daily, occurrences for me and other people who have high anxiety levels.  So how am I supposed to know when they grow worse that this is actually down to me becoming ill?  I also, as I have discussed before, have a high pain threshold.  This has a lot of bonuses of course, but also means that things like infections can take hold and become serious before I even notice I`ve got them.  It is not uncommon for me to be ill for several days before I actually realise it.  And in those days I tend to have an outburst (meltdown) This happened again recently.  I had an outburst and was short tempered for the next couple of days, and then I became ill.  The same old pattern.

But it raises questions.  The biggest and most obvious of which is `if it is the same old pattern and it has been going on for years, why can`t I spot it?  The honest answer is I don`t know.  I think it is a combination of things.  As I`ve said before, symptoms get lost.  I don`t feel pain the same way other people do.  But also I think I get so caught up in the short term impact; if I am feeling ill then things such as noise, or other sensory stuff will affect me much more than they normally do.  So I need to deal with this.  In the moment I can`t stop and think `why can I not handle so much talking? ` I just need whoever is talking to shut up so that is what I tell them to do.  My Mum tends to react to that, but I still need her not to talk so I tell her again, and things escalate from there generally.  We can both see this perfectly when we look back at it, but in the moment neither of us seems to be aware.  It is something that we both need to work on.  But I am sure you can see how difficult it is trying to spot illness in somebody or even in yourself, by how they/you speak or react to things – days before any symptom of the actual illness become apparent.

Have any of you ever experienced anything like this?  And if not how does illness impact on you, if you are autistic?

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

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

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

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Overloads, Meltdowns, and a missed Appointment ….

I have spoken a lot in the past about how overload can affect people with autism, including myself.  And how important rest days are.  But I have to admit, even though I understand in principle how to avoid feeling overloaded, or what I need to do when I am in a state of overload, it has been very hard for me over the past few weeks to put these in to practise.  Even just looking at the past week as an example, I feel like I have been in a near-constant state of overload.  I have been walking from room to room unable to do anything, simply lacking the focus and motivation to even sit down and watch a film.  I have had an outburst, brought on by this stress.  Because it is stressful.  Imagine being imprisoned in your own home.  But one of the terms of your imprisonment is that you can`t use anything in your own house.  You are surrounded by the things you like, the things you enjoy doing, and yet you can`t do any of them.  The hours must be spent instead doing, well, doing what?  Sitting?  Standing?  Walking from room to room?  Going upstairs, looking round and coming back down?  And so on, for hours or even days upon end.  You can`t go to bed and sleep through it because your mind is far too active to sleep.

So what brought this on?  The roots of this overload, and the stress and outbursts that came as a result of it, come from going out at the weekend.   Not going out clubbing, just going in to town the same as anybody else would.  Not something I would normally do, but still not something I thought would result in eight days of overload.  Now that may be a bit of a simplistic way of phrasing it.  The past year has been full of stressful events that have of course left a mark, and I did go out again on the Wednesday for something relating to work.  But I guess that`s the thing; it`s hard to tell recently where one overload stops and the next one starts.  It seems that instead of having an overload every now and then and most days being spent working on my writing, or getting on with whatever I choose to, I am overloaded most days and the days that I can actually work, or function at all, are the rare days.  But it is getting to a point where I feel my overloads are starting to incur in to my life more than they ever have before.  Let`s take yesterday as an example.  What I was supposed to do was to travel to my university via tram and talk with one of my lecturers about help and support for my upcoming second year at university.  I got half way to the tram stop before I had to turn around and come back home.  I knew that I was too overloaded to be able to function properly or contribute anything useful to this meeting.  All that would result from it was yet more sensory overload, and in all likelihood another outburst.  In a way it is positive that I was able to recognise that there was nothing to gain from forcing myself to go to something I was too overloaded for.  And I certainly wouldn’t be getting any work done today if I had of forced myself to go to the meeting yesterday.

You might have noticed that this isn’t a blog full of tips of how to get out of a situation like this.  If I had them I would be using them and there would be no blog to begin with.  I am unsure whether this is a positive or a negative blog.  On one hand I am telling you that I am finding it hard to function, to get things done and that I am near-constantly overloaded, but on the other hadn`t I was able to recognise the overload yesterday, minimise its effects for the coming week, and avert a probable outburst.  It may well be that what I have to do is change the way I think and the way I structure my time., the commitments I take on and the pressures I put on myself.  As I have said before, many times on my blog, there is no point in forcing yourself to work, or to try to get more out of yourself once you are overloaded.  Perhaps what I need to do is pull back even more than I already have, let myself rest, and build up again slowly.  And the note that I would like to end on is that this is ok.  Overload is a very real thing, and if you have not experienced one then I don`t think you can ever really understand how it feels.  Add to that the issue of delayed overloads, and you can see how difficult it is for me to even go out once or twice, and the impact that this can have on me.  I feel like I need to change the way I do things, and try to understand the impact of my overloads more than I already do.  And even though the reasons for me having to do so are negative, the impact of doing so on my future will hopefully be positive.

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?

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

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

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“You don’t look autistic …” And why Autistic People hate hearing this so much.

If you spend any amount of time on the online autism community then I am sure you will know how much people with autism hate being told they don’t look autistic. But what you might not know is just why saying this is so offensive to many autistic people, and to the parents of autistic children.

Let’s have a look at all the steps that go in to making this one of the worst things you can say to someone with autism.

  • It assumes autism has a look: Kind of the most obvious point; by saying someone does not look like they have autism you are stating that some people do look like they have autism. Therefore, in turn saying that you can spot autism just by looking at someone.
  • Dividing people: But even though you are implying autism has a look, and is something that can be spotted at a glance, you don’t think the person you are talking to looks autistic. So they can’t be autistic in the same way as those other autistics, not like the ones who look You might not mean this, but that is what it sounds like.
  • Normal:  When people say “You don’t look autistic” they most often mean it as a good thing. The idea being that they are telling you that you look normal, so to speak. But think about this – they are saying that because you don’t look like you have autism you look like someone without autism, someone in their eyes who is normal. But you still have autism. So they are pretty much saying “Wow you look so normal, for someone who is not normal.”
  • Better/less: If you are told you do not look autistic, and you understand that someone is trying to compliment you by saying this, think about what that compliment means.  As I said it means they think you look “Normal”. As if you were `less autistic` than someone else. Now what this does is firstly to play down how your autism might impact on you, but also to put a whole mass of unknown autistic people below you in their eyes.  As if you look normal, you pass for not being autistic, and somehow that makes you better than people who they can tell do have autism.
  • Identity: Some people like the idea of being able to hide their autism from the outside world.  And yes I can see how it might help, in terms of getting a job and such, but at the same time there are other people who see their autism as integral to what makes them who they are.  To be told that they don’t look autistic can be very upsetting for that reason alone.

 

So those are a few of the things that I think can be taken from the statement “You don’t look autistic.”  Am I being over-the-top, and reading too much in to it?  Well, No.  Autism does not have a look.  You can’t tell just from seeing someone if they are autistic or not. So to say to them “You don’t look autistic.” is at best silly.  And at worse offensive.  If you have said it at any point don’t worry, this is not meant to call you out, and make you feel bad.  It’s just meant to make you think a bit more about what you say.  We all say silly things from time to time, but the key thing is to listen to people when they explain why said things are offensive or rude, and to learn.  Next time, when someone tells you they are autistic just think for a second before you answer them, and try to avoid giving offence.

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