Tag Archives: aspergers

Why politics can be life or death for disabled people ….

(Note: I should have written and published this before the election, but I think it`s worth putting out now. One because the result is still not fully confirmed yet, but also because it will still be relevant for other elections, or just to help people get a sense of what is going on in this country.)

Some people are happy to let politics pass them by. They turn off the news and skim past links on Twitter, acting as if it has nothing to do with them. “Its boring” they say, or even worse they make the close to unforgivable statement that “None of it matters anyway”. It should be clear to anyone reading this how silly such a statement is, and I wish that I could just say “On their own heads be it” and leave them to their ignorance, but the truth is the consequences of such ignorance falls on all our heads. Politics underpins everything in life, so by all means if you have no interest in how much tax you pay, the cost of what you buy, the state and price of your healthcare, education, the emergency services, terrorism, poverty, civil and equal rights, crime, homelessness, war or the environment, then feel free to take no interest in politics.

But if you do care about any of those things then you already have a vested interest in politics. This means you can`t just sit back and ignore what’s going on in front of you in the political world. It means that you understand that what you see on the news will have an impact in your real life. There are some groups of people who can see, and feel this more than others.

If like me you are disabled/autistic, and have lived for the past seven years under the Conservative government, you won`t have been able to avoid seeing the devastating real-life impact of their policies. I could sit here and list the atrocities committed by this government, and the coalition before it – and perhaps I will do so in another blog – but for now I want to talk a bit more about what it feels like to watch the fight for number 10 unfold in front of your eyes knowing the very human cost that losing this fight could bring. I will touch on the destructive policies of the Conservative government, but if you want to know more I suggest following these links. ( https://www.theguardian.com/profile/frances-ryan

The Conservatives have launched a two-pronged attack on disabled people, both cutting our benefits, and also cutting the budgets of local services set up to help disabled people. There are people with mobility issues who have to drag themselves around on their own floors because they are no longer able to get carers to come in, and help them to care for themselves. Some people find themselves confined to their homes as they have their mobility benefits taken off them, or find that they are no longer entitled to the modified cars they depended on to get out and about. Disabled people who are unable to work are having their benefits cut to the point where they can no longer feed themselves, let alone pay for care. It`s not going too far to say that disabled people in England in 2017 are treated as less than human by their government.

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The welfare state is being butchered in front of our very eyes, and the cleaver falls first on those least able to defend themselves from its blows. There have been hundreds of suicides linked to cuts in benefits. Think about it; if you need X amount of money to live and you find that money cut, cut and cut again it`s not hard to see what the outcome is. You can`t pay for your care, you have to face the daily struggle of just trying to stay alive, only now you have the Conservative government blocking your attempts. It`s not hard to see how people are driven to, and past the point of giving up all hope. And its not as if disabled people are not speaking out about this. On the BBC`s Victoria Derbyshire show a disabled woman named Fiona confronted Dominic Raab M.P. about these very issues. She told him of people she knew who had been driven to the point of taking their own lives by the harsh cuts to disability benefits. Raab said it was childish. He was recently promoted to the roll of Justice Minister.

Fiona summed it up when she said “This election is life or death for us.” Disabled people don’t get to ignore politics any more, we don’t get the chance to pretend it does not impact on us. We can see the levels of humiliation, degradation and death caused by the Conservatives and their heartless, soulless, brutal brand of politics. We can`t just flick the T.V. off and stop thinking about this. We are watching the election, and its outcome knowing that if the Conservatives remain in power real people will die as a direct result of their actions. Some people will be watching events unfolding, knowing that the chances of them surviving five more years of life under the Conservatives are slim at best.

It must be nice to be able to exist in a state of blissful ignorance; a world where the savage reality of cuts to the most vulnerable, and the levels of suffering that they produce do not exist, or do not matter. But some of us can`t live in that state of ignorance. We know that the fight against the Conservatives goes far beyond a clash over political view points, and for some disabled people it is a fight for dignity, for the right to be treated like a human being, and for life itself.

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

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

Twitter https://twitter.com/ASKPERGERS

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

 

Autism and the stress of a simple walk

I have written a lot about sensory overload, and the impact this has on me and other autistic people, but there might be an idea that to get this overload I have to go somewhere busy, or noisy. This is not the case. In fact just the act of walking my dogs in the streets for fifteen minutes can be full of so much sensory and social stress that I become overloaded by the time I get back home. I would like to use this blog to explain how even something that sounds so small can be so full of stress. So let’s use the idea of walking the dogs as an example for now – the point being that I don’t have to go anywhere; I am not going shopping or to a meeting at the end of the walk, in fact I am just walking around and and then going home. So why is that stressful?

  1. Build up: There is still the build-up to going out even if I am only going on a small walk. I have to decide when to go, plan for it, get myself ready, and know that I will have to deal with all the stress that I encounter when I am out there. For some things you might be able to go out early in the morning, and get them over with, but other times you might have to wait and the longer you wait the more the anxiety about having to go at all builds up. It can get to a point, for me at least, where if I am not able to go out until the early evening – even if it’s for something I want to do and something I know will hardly take any time at all – I have had so long for the anxiety to build up that I would do almost anything not to have to go.
  2. Noise: The outside world is noisy: be it birds, cars, planes or people, almost anywhere you live someone or something is making noise. These are just the background noises of life, but sometimes, depending on how I feel, even they can be too much. In the course of walking down one road with my dogs I might have to contend with the sound of drilling, of a plane going over head, of people walking by talking, of music coming from cars and the sound of the cars themselves passing by. Because for non-autistic people these sounds just fade in to the background I think it’s easy for them to forget just how much noise there is outside on a normal day, and how quickly that can build up in terms of sensory input. It’s worth pointing out here that a lot of autistic people deal with this by using headphones, with or with out music playing.
  3. Crossing the roads: I have not had the chance to talk to a lot of other autistic people about this one, but I know that it is a real issue for me. Over the years I have known some autistic people who did not feel a sense of danger, and would just run out in to the road (some of whom have even been hit by cars/buses) but that is not what I want to talk about here. I want to talk about the awkwardness of crossing a road. When I get to a road no longer can I walk with my head down, not looking at anyone. I can’t stay lost in my own thoughts, blocking out the world around me. No, I have to come fully back in to reality. I have to look up and be aware, stop blocking things out, look around me and try and pick out the sounds of cars approaching from the noise all around me. I have to think and make decisions on the spot; do I cross now or do I wait? But it’s not just making that call, it’s all the things going on around me as I make it. There might be other people waiting alongside me; are they crossing? No? Why not? Is it wrong of me to try and cross now? Yes, they are crossing? Should I go too, or wait here? Should I have gone then? If the road is busy do I just stand here and wait, or keep walking and cross later? What should I be doing now? Am I doing the right thing or not? OK, you might say that is being silly, that none of it matters, and that if you’re unsure what to do just wait till there are no cars and cross – staying safe is all that matters. Fine, but that’s not so easy when you have a brain that will overthink everything without giving you much say in the matter. Then when you do get to the point of crossing the road there is the interaction with the drivers. Cars come to a stop and you have to look at the driver and work out what they are trying to communicate to you. It’s hard enough to read what someone is saying via non-verbal communication when your face to face and have the time to think about it, but trying to do it from a few feet away through a pain of glass when you`re in a situation where you are expected to move quickly (at least by the waiting driver!) it becomes even harder. You have to work out if they are slowing down to let you go or not. Are you waiting too long when they are letting you go? Are you misreading what they mean and stepping out when you should not be? Again the main question for me is am I doing something wrong here? And again the answer comes back, who cares? It’s not like the interaction with the driver means anything; it comes and goes and everyone moves on with their lives. I don’t care in the long run what the people in the cars think of me, and I know that even if they did think anything it would be forgotten in the space of seconds. But that’s the point, it’s not what I know to be true in my head that has the impact, it’s the way my brain over thinks that brings on stress from even these seemingly meaningless interactions. Overthinking brings on more stress and anxiety, so much so that it can get to the point where the worry about crossing the road sets in before I even get to them, no matter how much I know on logical level that it is a silly thing to worry about.
  4. Walking past people: Another point that relates to overthinking is when you pass someone in the street. There is little to no interaction with them; perhaps they might smile or say hello as they pass, but that’s about it. But if like me your anxiety makes you over-think things you will find that as soon as you see someone walking down the road in your direction you will start to worry about what to do. Should you look at them? Will that seem as if you are staring at them? If you look away will it look as if you are avoiding looking at them? As if you think there is something wrong with them, or are passing some kind of judgement? If you look away then look back up will it look strange? At what point do you step aside to let them pass if need be? Does any of this matter? The answer to that last question at least is a simple one. No. The chances are if someone walking down the street notices you at all they think nothing of you, and if they do it’s not like you would ever know or be able to guess. But again I must go back to the fact that just understanding this on a logical level does not do anything to lessen the impact that it has. It’s all about what’s in your head, and the fact is that unlike noise from the outside world, you can’t do anything to shut it off.

I hope that the points listed above give you some insight in to why even a short work with no big social interactions such as going to the shops, or going to work can be a stressful and anxiety provoking experience for autistic people. It’s not to say every walk will be like that, or that every autistic person feels the same things I do, but it might be that some of you out there understand how I feel. For me what can be so hard about the whole thing is knowing that apart from the noise, the rest of it is in my head. People are not judging me as I walk down the street or try to cross a road, and even if they were I would never know. But when your brain is pushing you in to thinking certain things and feeling anxiety and stress it can feel like there is not much you can do about it. When you add that to the noise that surrounds you as you walk down the street, and the stress and anxiety that is a part of the build-up to going out you can see how even a small walk can lead to a sensory and emotional overload.

It’s worth keeping in mind that an autistic person does not have to be in a room packed with people talking at the top of their voices to become overloaded. Something as small as walking the dog can be so full of anxiety and stress, and lead to so much overthinking that it can bring about an overload that might come as a surprise to the autistic person, and those around them. And yet when you break down what goes in to even a small trip outside you start to see that for a lot of autistic people it is not so small after all.

Let me know what you think in the comments, as how ever much I try, I can only really speak for myself.

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

Sensory Overload – what triggers it and how it feels for me.

I am writing this at half seven in the evening of what has been a fairly productive Monday. I was unsure when I woke up just how productive I would be able to be today because once again I am coming down from an overload. This particular overload lasted two full days; two days where I was unable to do anything, hardly even watch TV. I want to use this blog to talk a bit about why I was overloaded, and how getting this overload each time I go out to try and do something outside of my routine makes me feel.

So what brought on this two day overload? As you may or may not know – depending on when this blog goes up, and how closely you follow my blog – I went to an autism-friendly Mayoral Hustings on Thursday of last week organised by the Greater Manchester Autism Consortium and the N.A.S , and that is what brought on my overload on Friday and Saturday. This blog will not go in to any of the politics of the event, nor is it in anyway trying to criticize the event itself. It was a well run event that I enjoyed, and was glad to have had an invite to. But the fact that it was an autism-friendly event and therefore much better for me than a normal hustings would have been, and yet it still left me feeling so overloaded, should serve to drive home the point of the blog.

What does an overload feel like?

If we are talking about the lasting feeling of being overloaded, not the short-term feelings I get right before a meltdown – and for the point of this blog we are – then I would say an overload feels somewhat like I imagine a frozen computer might feel like. I can`t do anything. This might sound over the top, but I can assure you it is not; I can’t think clearly, I can’t make up my mind about anything, I can’t focus on anything, I can’t enjoy anything, and I can’t even do mindless things such as watch TV to relax. I am stuck; frozen for a day or two just wishing the time away till my overload clears and I can go back to my life. In fact sometimes this frozen feeling can last for a week or more. Sometimes there will be physical pain too; my ears and head will hurt to the point where the smallest of noises can induce pain, and my body will ache and feel tired in the same way it might after a heavy work-out. I find myself stuck in a state of feeling the time pass; knowing the day is going to waste, with me doing nothing more than looking at the wall and wishing the time away, and yet being unable to bring myself to do anything. And this in turn leads only to more stress, more frustration and often to meltdowns.

What brings on an overload?

For me, and lots of other autistic people, an overload can be brought on by doing things outside of our routines, and an increase of sensory input, for example noises, sights or smells and social interaction. All these things are hard for us, and I know that for myself it only takes a small amount of one, or all of them to push me to the point of overload. If we take the autism-friendly Mayoral Hustings, and break-down what I did that day you can see how it led to an overload.

First of all I had to go in to town which is not something I would normally do, so even the idea of the event itself started off the path to overload. There is also the fact that I don’t often go out on my own, and have hardly ever been to any kind of event with out my Mum or Dad with me. That in itself is a big change, and even though it was good to be able to go out by myself I am sure doing so for the first time still added to the stress. That day my morning routine had to change as I had to get myself ready to go out, meaning that even though I was used to the idea I had to put that idea in to practise – which, as I am sure you all know, is a whole different thing. In order to get to town I had to take a tram. Some days the trams are quiet, and some days they are noisy. The tram there was not too bad for most of the journey, but a few noisy football fans did get on around half way. This meant that before I had even got off the tram I had a lot of noise to contend with. I was early to the event as I try to be to most things, so I did not have to walk in to a busy room which was a plus. But as the room filled up it did become noisier, and it’s the build-up of noise that brings on an overload for me. A loud noise on its own might be unpleasant, but it won’t push me to be overloaded, but as the noises build-up: the talking, the moving of chairs, the scraping of shoes, coughing and such then it pushes me deeper and deeper in to an overloaded state. I was there for around two hours and there was something like seventy people in the room, so you can guess how much sensory input that was. There was also the matter of making small-talk with the people around my table. Now I did not have to do this; two of them knew me and would have been fine if I had not talked, but I wanted to. Talking and chatting might be hard for me, but I do enjoy it. I don’t want to go to events, and not have the chance to talk to people. But I am aware of the impact it has on me – as I said above social interactions play a large part in overload.

You can add to this the fact that I was meeting with and talking to political figures, and while I don’t feel intimidated by meeting people like that there was still the awareness that I was going to be on the spot talking to them, and asking them questions. It’s not a small event for anyone, but for someone with autism you can see how the day was full of things that can lead to overload, and there was no real way I was going to be able to do it without ending up with an overload.

Isn`t losing two days for one event too much of a price to pay?

This is what I found myself thinking on the Saturday. I enjoyed the event very much and loved having the chance to ask my questions, but after forty-eight hours of overload where I was unable to do anything I did begin to question if it was worth it. For one good event like that I will have two or three days where I have to do nothing, not even relax, just do nothing; drift around my house and wait for the hours to pass until I can get back to normal. It’s easy to ask myself should I go along to events like this? Should I give talks on autism as I sometimes do?, What’s the point of it all? But the question I always ask myself when I start to think like this is what would be the point of not doing it? Yes I would be avoiding the overload, but I can get overloads anyway from things I can’t get out of such as going to get my hair cut, or seeing family. I feel like if I were to give up the things that I enjoy, and that make good memories just to avoid overload I would regret it later in life. Yes it’s hard, and yes it’s not nice knowing that I won’t be able to blog about an event the day after I go to it, or have a nice relaxing day off after a day of hard work, but perhaps a better way to deal with this, than just stopping the things I enjoy, is to look at how I react to my overload.

Whenever I get an overload, and become frozen I always feel I should be doing something. “I cant just do nothing” I say. But as my Mum always says “Why not?” The idea of spending more time in bed on a day when I am overloaded never made sense to me. I get up at the same time, and sit around waiting for something to happen. But perhaps the key to all this could be something as small as training myself to do nothing; I don’t have to pick a film to watch, or a book to read if I can get myself in to a mindset where doing nothing is OK. In fact it’s needed.

I want to be a writer, and along with that a public speaker, and perhaps also a journalist and documentary film maker, and without trying to sound cocky I know I have what it takes to be all of these things. But I also know there will be a price to pay. I have to get used to the idea of paying that price, and try and work out how to lessen its impact rather than giving up on the idea of doing what I love. But on days when my overload is at its worst, thinking that way is hard to do. And I should also point out that I have cancelled a lot of stuff over the years due to overload, and I am sure I will cancel a lot more, but over all, and in answer to my own question, overload is bad, but yes it is a price worth paying for doing the things I enjoy – for me at least.

Let me know what you think in the comments, as how ever much I try, I can only really speak for myself.

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

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

Twitter https://twitter.com/ASKPERGERS

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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

Making my first phone call.

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

Autism, and the confusion around receiving gifts …

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

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

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

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

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

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

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

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

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

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

“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

 

Managing Sensory Overload …

I have spoken before on my blog about rest days, and about how sometimes they have to be taken even when I would much rather be productive.  But often I will only have rest days when I reach a point where they are absolutely necessary, after I have become overloaded.  Even though this might help to reverse the overload it means that I don’t have a great deal of control over when I rest, and when I am productive.  So what I have been trying this week is resting the day before I know I have something to do, such as going out, in order to ensure I have enough energy to complete the activities.  Even though I like to plan I have never been very good at planning in a way to ensure I was resting, and would have enough energy to do everything I want to do over the course of a week.  I might push myself too far on a Friday, even when I began to feel tired, and therefore not have enough energy to go out on a Saturday.

This week I had planned to go out on Thursday to visit family.  I knew that to get there I would need to use public transport, and it might be a relatively busy and noisy environment when I did arrive.  To ensure that I had the energy to go and accomplish this I had Wednesday as a rest day.  As strange as it sounds it was difficult to rest as I felt I should be doing something more productive and useful.  And yet the next day I could feel the benefits.  I felt much more able to go out and do what I needed to do than I would have done if I`d pushed myself on the Wednesday.

I needed to walk to a tram stop, travel on public transport and be in a really busy, noisy environment; interacting with people socially for an hour and a half before getting the tram, then walking back home.  And while I did feel overloaded after this I know that if I had woken up on Thursday feeling overloaded there is no way I would have been able to get up and go out, or even attempt doing this journey.

So even though it was difficult having a rest day on the Wednesday I feel that it was worth it.  When you enjoy working, then it can be hard taking the time out that you need to rest, especially if it is rest as a preventative measure.

But one thing that I am learning and understanding more and more as I grow older is my limits, and what I need to do to ensure that I stay within those.  The reality is I can’t push myself to the point of overload every day, and not suffer badly from it.  When I had to get up each day and go out to college or university, traveling on public transport and interacting with people for hours, I barely had the energy to do anything else.  Even activities such as reading and watching films felt hard for me.  And I need to remind myself at times that this isn’t because I am lazy.  It is because I am autistic, and when I become overloaded it means that I have pushed myself too far.  I am productive; I have a book coming out later this year, and I have edited and helped my Mum to publish her book earlier this month https://www.amazon.co.uk/dp/B01GO1N1X6

But there will be days when I simply sit around and do nothing.  There might be more of these than there are for most people, and as strange as it might sound I think that is one of the hardest things about being autistic for me.  I can`t work twelve hours a day, five days a week.  My mind literally starts to shut down, and I do mean literally.  It is as if a great fog closes in over my brain once I become overloaded.  I find it hard to form coherent thoughts.  I speak much less, my memory is severely affected, and I find it hard to hold a thought in my head for too long, or remember things.   Physically my body begins to feel stiffer; it aches, and I feel as if I have just done an incredibly difficult workout.  Basically when I am overloaded I am the last person you would want doing any kind of job for you.  It seems bizarre, but taking time off enables me to be more productive, and to do better work.  But if anything, I am the one who needs the most convincing of this …..

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