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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

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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/ 

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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?

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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 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?

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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: 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?

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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 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?

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

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

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

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

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

My Discovery of Autistic Pride Day

Apparently on Saturday it was Autistic Pride day.  I have to admit I had no idea about this, and only realised it existed due to the tweets I was reading on Saturday afternoon.  This is why I am only posting about it once, and late.

Of course never having heard of it, when I started seeing people tweet about it, I wanted to find out more.  What is the idea of the day?  Why is there such a thing as Autistic Pride?  And might it be something I am interested in the nest time it comes around?

From what I can understand the notion of Autistic Pride day, or at least the way people choose to use it, is almost to counteract the effect of Autism Awareness month.  Not to imply that in itself is a terrible thing, or that all of the content put out during that month is bad.  But what you do find is that there tends to be a lot of conflict; some people want to `Light it up Blue` for example, while others are opposed to this, and there are stunts such as people locking themselves in glass boxes that are supposed to help autistic people. Overall, despite the idea of raising awareness of autism, it can be a conflicting and difficult month for anyone in the autism community, especially autistic people.  A lot of the tweets that I saw hash tagged with Autistic Pride day stated very clearly that this was not a day to raise awareness for autism.  It was not a day to raise money, or to push some cause, and it was also not a day for charities or carers or family members.  It was a day for autistic people simply to acknowledge each other, and take some level of pride in being themselves.

A lot of the tweets I saw made this pretty clear.  And there did seem to be a sense, especially with some of the younger autistic people who were tweeting, that it was a relief just to have a day where autistic people could actually take centre stage in the autistic community.  Now as I say, I don`t know a huge amount about Autistic Pride day, and what I have written above is just what I understood from the tweets that I saw.  But for me I like the notion of having a day that isn’t about awareness, that isn’t about how autism can impact on other people, and that isn’t even about a singular aspect of being autistic.  But is rather just a chance for autistic people to feel in some way part of a community of people similar to themselves.

So why would there be Autistic Pride?  Well this is just my personal view, and it will be completely different for other people.  I am not proud of the fact that I am autistic, but I am not ashamed of it either.  It is not something I had any control over so it is not an achievement on my part.  But for me, I feel that there is certainly an idea among neuro-typical people that if you are autistic, and you achieve something you have done that despite your autism, or by overcoming your autism along the way; as if I can be proud of who I am, and what I have achieved, but not that particular aspect of myself.  But I don`t see my autism as separate from who I am.  If I achieve something, for example I publish a book, then I am proud of that.  I am not proud of myself for `over-coming my autism` and publishing a book.  For me, and again this is just a personal opinion, the  notion of autistic pride is about saying that I can be proud of myself for doing things, or be proud of who I am as a whole, without discounting a huge aspect of myself, and what makes Me, Me.  If I am proud of who I am, and autism is integral to who I am, then in a way then yes, I suppose I am proud to be autistic.  And I think the notion of Autistic Pride could go some way to dispelling the myth that autism is a negative, destructive force, or a shameful part of us.

So is this something that would interest me in the future?  I don`t know if Autistic Pride day is an official event, or if it was just a hashtag started on Twitter so I have no idea if there will be another or not.  But yes it is something that I would have an interest in.  It is important to make sure that something like this doesn’t become corrupted, and end up being used by the wrong people for the wrong means – in the vein of Autism Awareness month and campaigns such as `Light it up Blue`  https://askpergers.wordpress.com/2016/04/02/light-it-up-blue-but-for-who/  The idea should always mean being guided by what autistic people want, and not by what non- autistic people feel is best, or appropriate.

For me it was nice to be able to go on to Twitter, and see people just saying that they are proud of who they are, and including autism in that.  This of course is something that you can do all year round, and you should do, but it would be nice to continue to have at least one day that is just about autistic people, and not the wider autism community.

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

Twitter https://twitter.com/ASKPERGERS

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

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

The A Word – Part 3

I`ve finally caught up on The A word so I thought I would share some of my thoughts on episode three. Even though I found some of the things in this episode to be less realistic than in the first two, I am still enjoying the show overall. Below are some of my thoughts, starting off with something everyone on twitter seems to have picked up on.

The speech therapist: I think it’s fair to say that no real life speech therapist would go in to a family`s home and berate the whole family for the way they talk to each other. It is true that the family’s communication is poor, and that might be something a therapist would address in a tactful way at a later date. But no one would sit around a table, and do this in such a confrontational way. And if they did I imagine they would be asked to leave before they got any chance to work one on one with the child. I do understand that it is a drama, and the therapist in the story had her own reasons for being that way with the family. But by doing so she was risking them throwing her out, and therefore depriving the little boy, Joe, of any help she might be able to give him.

Music is a form of communication: Sticking with the theme of the therapist, I was struck by how quickly she dismissed Joe’s music, and how his Dad uses it to communicate with him. It seems to me that Joe talks to his Dad more than anyone else. His Dad knows how to talk to him, and in my view the fact that he uses something Joe loves to do so is no bad thing. It might be a matter of opinion, but for me what a therapist should do is to make the family more able to communicate with the autistic person on their terms – to make sure they are included and give them the chance, and the tools to join in in the best way they can. The Dad seemed to be doing that quite well by using the music as a way of interacting with his autistic son.

Joe being asked questions: With this point I know how I feel, but at the same time I don’t know if that’s just because of my experiences, or if anyone else felt the same way. The way that the speech therapist tried to engage Joe, and get him talking was to make him more of a part of things. By asking him direct questions, and getting him to do things rather than be passive. I know that for me this would not have worked as it would have put me on the spot, and made me even more overloaded and worried. But what about you? As I say, everyone with autism is different, so just because this would not have worked for me does not mean it would not work for anyone. Let me know, does being drawn more in to things, and asked to do something help you? Or like me would you find this overwhelming?

The issues seem to be with the family rather than Joe: Joe seems to be quite happy. He is not having a lot of outbursts, and meltdowns, and overall seems to have a good life. Now that does not mean they should not try and help him so that he is more included in family life, and has some of the tools to deal with life as he gets older. But the rushing around and panicking about Joe`s autism, tossing money at it, and acting like there is a time limit on when they can help Joe is all down to the parents. The situation is not urgent, or even bad, but the Mum at least seems to feel that it is. Again I don’t have an issue with this even though it’s the wrong way for her to think, as it’s the way a lot of parents do think before they know better.

The Mother, Alison, seems to think they can make Joe not autistic: Carrying on from my last point it feels as if Joe’s Mum thinks that Joe can be made to be un-autistic. That one day he will be talking all the time, and running round playing with other kids. The thing is even if he does make friends, and start to talk more he will still be just as autistic. A lot of parents of newly diagnosed children seem to see it this way; as if the autism is something their kid caught, and not a natural part of them. One thing that my Mum says comes to mind – she does, and has always, had a great understanding about autism being a part of who I am, and not something that can, or should, be cured. And when she would devise tips and tricks to help me cope with the negative aspects of my autism she would say “It’s not about making you less autistic, it’s about giving you the skills to cope in a world not set up for autistic people.” Most parents catch on to this at some point, but as, the programme shows it can take them a while!

Joe’s sister treats him with a lot of respect: When the family were sitting around the table Joe`s mum asked him if he wanted to try some acting. He thought about it, and said no. But his Mum told his sister to sign him up for it anyway – not paying any attention to the fact that he had said he did not want to do it. It was clear from his sister`s face that this made her uncomfortable, and she said that she would not do it. Again this felt quite true to life.

Alison has a need to be in control of everything: Going back to Joe’s Mum, she seems to have a need to be in control of everything, and everyone around her. She does not take no for an answer, and often does not think about how what she wants will impact on those around her. It does seem that as long as her ideas are followed, and adhered to then she is happy, even if no one else is. But that being said she does not seem like a bad person, just someone who finds it hard to hand over control, or follow a path set by someone else, even her autistic son.

Joe is still walking out alone: So even though they thought they lost him last time out, they are still cool with him walking around on his own. This is the only bit of the show I can’t quite understand; autistic or not, it’s odd that a family would just let their five year old son put on headphones, so he can’t hear any traffic, and walk off down a road, on the off chance someone he knows will grab him, and bring him back.

So those were some of my thoughts. But what did you think? Let me know in the comments.

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

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