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

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

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

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


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

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

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

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

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

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

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

But it’s not just lazy.

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

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

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

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

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

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

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

People with Autism Spectrum Disorder may be vulnerable to ISIS propaganda

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

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

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

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

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

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 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

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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

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

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

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

Making my first phone call.

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

Autism, and the confusion around receiving gifts …

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

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

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

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

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

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

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

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

How Dyslexia impacts on my writing and my confidence.

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

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

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

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

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

`There are far more autistic males than females`.

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

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

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

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

 

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

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

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

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

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

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