Tag Archives: Disabilty

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?

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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

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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 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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

Inspiration Porn – an autistic point of view

Autistic people, and disabled people as a whole are not here to inspire you. They do not live their lives so that it can be filmed, put to an uplifting sound track and posted on Facebook. Most of you should know this, and you might even be nodding along to this blog, but it’s amazing how many people fall in to the trap of re-posting what has become known as “Inspiration Porn”.  But what is Inspiration Porn?  And why is it an issue for disabled people?

First of all what is inspiration porn? From what I can find online Stella Young the comedian, journalist and disability rights activist was the first to use to term ”Inspiration Porn” back in 2012. It refers to stories where someone with a disability is called inspirational for doing normal, everyday things just because of their disability. Think of someone using a wheel chair being approached by a stranger in the street, and told they are an inspiration. Then imagine that same stranger takes a photo to tweet, or writes a post on Facebook about what an inspiration this disabled person is.

So why is this so bad? Well inspiration by its very definition means being inspired to do something, or to feel something. But mostly you would say you were inspired if you saw, read or heard something that then pushed you on to go and do something yourself. But the word inspiration in terms of inspiration porn is used in a very strange way. Think “Autistic person gets date to prom” what has that inspired anyone to do? Is it in terms of “Well if someone with autism can get a date why can’t I?” Just break it down and think for a second. What’s the inspiration here? Someone with a disability did something day-to-day. Not only is that a headline, but it’s going to go viral and become world news. If you’re non-disabled try and put yourself in that story. You wake up and go to the shops. When you get home from work that night you log on to twitter only to find out that someone noticed you out shopping, and was so inspired, so moved by watching you decide what flavour crisps you wanted that they just had to take a picture and tweet it out. In fact what you did was so fantastic that thousands of people re-tweeted it. Makes no sense right? Well run through the same story again only this time pretend you`re autistic, or you have one arm. It could be anything. Do you think you would be any less shocked or perplexed to see yourself all over twitter?

The bottom line here is that disabled people are just living their lives. Yes some things might be hard for them to do, and yes doing day-to-day stuff might feel like a big deal to some people. But that’s their life. They are not doing it to try and make other non-disabled people feel better about themselves. If you are disabled and you feel like you might never be able to do something, and then you see someone with the same disability as you doing it sure that might inspire you. But it would inspire you to do something, not just post about it online. The idea behind it seems to be that disabled people just sit in a room all day doing nothing. If they do anything outside of this it must be a huge deal, and worth taking time out of your day to admire. Disabled people are not here to act as inspiration, but what makes it even worse, in my eyes at least, is that people are not even inspired to do anything. It’s not as if the people who share these stories go out and do something – they just talk about it, post about it, and then forget about it. That is not on any level inspiration.

Also let’s think about how these stories and images tend to be played-out. More often than not it’s not even the disabled person who is given the headlines. It’s “Cheerleader asked boy with Downs Syndrome to prom” Or “Staff member helps man with autism in busy shop.” In other words “Girl asked boy out on date.” “Staff member does what they get paid to do.” But as soon as you bring disability in to it their acts are elevated to almost hero status. The girl did not ask any old boy to the prom, no she took it upon herself to ask the disabled boy. And that act should inspire you to …well I am not sure? And the staff member doing their job, nope, a hero because even though they are paid to deal with the public someone with autism is clearly outside of that right?

People share stories like this because they want to feel there is good in the world. Because they know how much bad stuff happens to disabled people and how hard life can sometimes be for everyone, disabled or not. But this is not the way to show how good the world can be. This is just showing people living their lives, or doing their jobs. It’s like saying “look at them, they`re disabled but they can still get out of bed, and live with themselves. Even like that. My life is not so bad. I should go to the gym tonight.”  Just try and think before you share something like this again. Think about what it is, and what the real point of it is. Think has it inspired you to do anything? And if so why? Because the truth is most, if not all, disabled people hate inspiration porn. We don’t want it, it gives us nothing, and yet it focuses on us. And all so someone else can feel happy for a few seconds when they hit share.

Stella Youngs TED talk: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en

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

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

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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

Awareness versus Acceptance ( re-post)

As I have been too ill to prepare anything for World Autism Day I am reposting this.

Awareness versus Acceptance

Many people argue about whether awareness or acceptance are what people with autism want from society.  Lots of people will say that an awareness of autism is fine, but people can be aware and still not accepting.  Virtually everybody thinks they know what autism is, but that doesn’t stop people being offensive.  And some people argue that acceptance suggests that it is up to the neuro- typical people to say `Oh, we accept people with autism` as if NTs can decide what types of people are acceptable, as if autistic people have put forward a fairly good case and they`ve been accepted in to the day to day order of things.  My view is somewhere in between:

Awareness

  • Awareness means everybody being aware of what autism is, and having at least a basic knowledge of it.
  • Awareness is a positive thing because it will hopefully lead to greater understanding, easier access to services, and make life easier for autistic people.
  • The vast majority of people are already aware of the existence of autism, even if they don’t fully understand it.
  • Awareness can help improve the lives of people with autism.
  • Awareness can’t solve all of the problems.

Acceptance

  • Acceptance means people who aren’t autistic accepting autistic people and their ways.
  • Acceptance can be very positive as it might make things easier in the work-place or learning environment.
  • The word acceptance does have a tendency to give a lot of power to the people without autism, as it suggests that it is up to them to decide if they want to accept autistic people or not.
  • A lot of people don’t like the phrase `acceptance` for that very reason.
  • Does this mean that acceptance is a bad thing?  No, it doesn’t. But it does mean that it is something that you have to be careful about when approaching.

Taking the positives and negatives from the concepts of awareness and acceptance, I think that there is a good ground to be reached somewhere in the middle.  Most people are aware of autism to some degree – even if it is just through Rainman. Some people are accepting of it without really knowing what it is.  For me the real key is understanding; you can be aware of autism, but not really know what it is.  Often this will lead to pity, people being patronising, or a belief that people with autism are either dangerous, or completely pointless trying to communicate with.  A lot of negative stereo-types pervade the public’s perception of autism; they are accepting yes, but quite often they are not accepting of real autistic people.  They might be aware, but in reality they are not aware of real autism, they are aware of the Medias` portrayal of autism.  That is why understanding is so important: you are aware of autism – good.  You are accepting of autism – good.  But do you understand autism?

For more information and advice on Autism/Asperger`s see our free on-line service

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To read some of my autism articles check out my author page http://www.autismdailynewscast.com/author/paddy-joe/

I have co-authored two autism books. Check them out J

http://www.jkp.com/uk/helping-children-with-autism-spectrum-conditions-through-everyday-transitions.html

http://www.jkp.com/uk/create-a-reward-plan-for-your-child-with-asperger-syndrome.html

Paddy-Joe Moran

Autism and the Puzzle Piece ………..

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The puzzle piece has become synonymous with autism, and with autism awareness over the years.  A lot of people use it, but most likely many of them don’t think about what it means.  I have been thinking about what it means, and what it represents recently, and I have to say that after giving it a lot of thought and consideration, and weighing up many arguments for and against, I am not a fan.  I am not suggesting it is immediately deeply offensive in the way perhaps racist language would be, and I am certainly not saying that people who use it mean to be offensive, or even mean anything negative about autism.  There are many reasons why I dislike it as a symbol, and in this blog I will attempt to explain what they are. This isn’t meant to be calling anybody out, and people should not feel like it is criticising them if they have used the puzzle piece.  It is simply my view, as somebody with autism, which I am putting forward to make people think.

In 1963 the NAS needed a symbol to represent autism because it had only been officially recognised about twenty years earlier, and it wasn’t really known about at all.  They wanted to be certain their symbol wouldn’t be mistaken for anything else.  There are a lot of charities out there, and finding a symbol that catches the public’s imagination, but isn’t too similar to anything else is difficult.  In the end they settled on a puzzle piece, with the image of a crying child in the centre, created by a parent member Gerald Gasson, This has to be seen in the context of the times, when the majority of people with conditions such as autism may have been institutionalised, and there wasn’t a great deal of care, support or understanding for autistic people.  The charity Scope was still known as the Spastic Society, and terms such as Moron, Imbecile and Idiot were still recognised medical diagnoses.  Virtually all the coverage of disability, learning disability, or any difference would have been negative.  So as a collection of parents who had set up what was probably the first autism-specific organisation in the world, they weren’t exactly in the best position to make sure everything was politically correct, and anyway political correctness as we see it today didn’t exist in the sixties.  When talking about why they opted for the puzzle piece and crying child, in the late nineteen eighties, one of the founding members said:

“The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.”

This type of language may have been acceptable in those days, but nowadays the concept of somebody being `handicapped` or `suffering` from autism is outdated –  that part was symbolised by the crying child, so the concept of autistic people not quite fitting in to society was therefore represented by the puzzle piece.  But there are actually still a number of problems with this idea which I will highlight below. The first and most important thing to say is that as with any point I raise in my blogs, it is not just me saying it.  I did plenty of research in to what other autistic people and their families think of the puzzle piece, and these are some of the main concerns that were raised

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  • The first point that many autistic people raise is the way this symbol assumes that we are puzzles, to be decoded in some way, rather than just people.  It is impossible to ever truly understand another person, so in a way we are all puzzles.  It has been said many times that if people would just listen to what autistic people have to say, or read what they write, then understanding autism and the autistic brain would be much easier.  It seems as if you might as well use a puzzle piece to represent people from Japan because you don’t understand Japanese culture, whereas if you simply take some time to talk to, and listen to Japanese people, things will become clear.
  • Another point – this one actually raised by people who are neuro-typical – is that the concept of decoding the puzzle of autism really seems to be more representative of neuro-typical professionals than it is autistic people.  Autistic people simply live their lives – they are not trying to put a puzzle together.  It might seem like a strange distinction, but I actually think it is an important point.  It does feel more like a symbol that would be worn by people who do research in to autism rather than people who actually live with it.
  • Although the puzzle piece is often used either without thinking, or with good intentions, people often misunderstand it, and its meanings.  Part of this may be to do with not understanding its history, and part of it may be because they assume it represents one thing, without actually thinking about it any more deeply.  This may be why so many parents, and even autistic people use the symbol.  And really it does complicate the issue because although in its origins, and with what it represents today, it is a negative symbol, it is used in a positive way by so many people.

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This sometimes makes it difficult to keep in mind what is wrong about it.   The real issue is that it is not obvious at first glance what it`s supposed to represent; people who defend it say that the pieces represent the families and friends of people with autism, the colours can represent diversity, and overall it represents the mechanical and logical workings of an autistic persons mind.  Now personally – and I know I am not alone in this – I don’t think any of this is obvious at first glance.  In a way it kind of makes sense, but it doesn’t really because none of those things actually call for a puzzle piece.  But if you think about it for a while you can kind of make it make sense.  The problems with this is you shouldn’t have to think about it – it should be instantly understandable at first glance.  The fact that it leaves so much room for interpretation is no doubt part of the problem. *

  • The puzzle piece is a fairly child-like symbol, using primary colours and big jigsaw shapes   A lot of autistic people may like bright colours, and appreciate the symbol on this level, but in a way, because it is so simplistic it does give the impression of being aimed at children – which could be seen to be reinforcing the negative stereo-type that only children are affected by autism. And it was actually designed to represent children because at the time the National Autistic Society was called The Society for Autistic Children (until 1982)

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  • The concept that there is a piece missing from people with autism which separates them from the rest of society is incredibly problematic.  It could easily be seen to be implying that there is a template for how people should be – a template of normality that people should strive to reach – and that because autistic people don’t measure up to this template, they are not full, complete human beings.  The truth is that people are different in all kinds of ways.  Autistic people don’t have something missing from them; they might feel things differently or think differently, but this is just who they are, and is not because a piece of them is missing.  And in a way the symbol does give the impression that if this piece can be found, and slotted in to place, autistic people will finally be whole.

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It is also worth noting that although Autism Speaks didn’t create the original puzzle piece, they seem to be the organisation most associated with it nowadays.  The bulk of their time, money and resources are spent on puzzling out autism; trying to find cures, and researching the causes of autism.  I personally don’t support them, but if you do that`s your choice.  I think that for a while the puzzle piece might have changed to represent a more positive image of autism, but now I believe that because of how much this organisation have been using it, and how it has become synonymous with their campaign to cure autism, it has gone back to its original meaning – mainly that autistic people are somehow lacking.  The debate over Autism Speaks is something for another blog, and I know it seems unfair to let them have the monopoly on an image such as the puzzle piece. But I do find it strange when people I know who speak out against Autism Speaks are happy to use the symbol that this same organisation plasters all over everything it ever puts out.

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Now it would be easy to sit here and say stop using the puzzle piece – I don’t like it, and nor do many other autistic people – but that perhaps would be a little unrealistic.  It has become so ingrained within autism awareness, and campaigns for acceptance that it would be difficult for people to stop using it overnight.  In fact there is an entire industry that appears to have grown up around it: clothes, jewellery, tattoos, to name a few, all featuring the puzzle piece.  Yes, if most autistic people are opposed to the puzzle piece then it should be retired, but I wouldn’t expect this to happen overnight – it may ultimately take years. The National Autistic Society dropped the puzzle piece in 2002, probably because they realised people in the autistic community were not fans of it, for all the reasons stated above.  And maybe in time other organisations will drop it as well?  I suppose the question that I am asking is this – if the NAS created the puzzle piece and used it for so many years, but have now ultimately decided that it is not a symbol they want to continue with, why have other organisations picked it up and ran with it?  If they took the NAS lead in using the symbol in the first place perhaps they should also take their lead in moving forward, and finding a new, more positive symbol?

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But perhaps the most important thing you can do when reading this blog is just to think.  If you have not already been doing so then take a moment now to think about the puzzle piece.  How many times have you seen it in literature, on the internet, in videos, on TV and in books?  Think for a second about what it actually means to you.  Not definitions given to you by somebody else, but when you see this image, what do you think?  Some autistic people have said that they like to be described as a puzzle as they find it appropriate for them, but I was actually surprised by the amount of neuro-typical people who when they stopped for a second, and actually thought about how they would feel as grown men and women being described as a puzzle, an enigma, or something to actually be put back together, realised that they would hate it.

This blog isn’t intended to make anybody who has been using the puzzle piece image feel guilty by the way – it`s not a big deal – just have a think about whether you want to continue using it, or whether you want to use something different?  I read a comment on an old Facebook page a while ago that I think perhaps could be useful.  The person in question was saying that when they first saw the puzzle piece it made them think that autistic people were a piece of society that had been ignored for a long time, and that it was society that was incomplete because of its refusal to accept different groups of people, so that instead of being a puzzle themselves, autistic people were just parts of a larger puzzle – that being humanity in general.  If  the puzzle piece isn`t to be retired completely,  may be it is worth thinking about this, and deciding exactly what it is you are trying to say or represent when you do use  the puzzle piece as a symbol of autism – what is your message, and if that message were aimed at you, how would you feel?

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

For more information and advice on Autism/Asperger`s see our free on-line service

ASK-PERGERS?

Facebook https://www.facebook.com/ASKPERGERS

Twitter https://twitter.com/ASKPERGERS

To read some of my autism articles check out my author page http://www.autismdailynewscast.com/author/paddy-joe/

I have co-authored two autism books. Check them out J

http://www.jkp.com/uk/helping-children-with-autism-spectrum-conditions-through-everyday-transitions.html

http://www.jkp.com/uk/create-a-reward-plan-for-your-child-with-asperger-syndrome.html

Paddy-Joe Moran J

Is Autism a Disability?

One thing that kept coming up when I wrote my blog about the idea of a cure for autism, was the fact that the word cure made it sound like autism was some kind of disease.  Also, I have noticed a lot of anger recently on Twitter about people on the T.V. using the term `autism sufferer`, which again implies some sort of illness.  Even the term disorder, as in autism spectrum disorder, has its fair share of critics, but what about the terms disability or disabled?  Are these the correct terms?  And ultimately does it even matter what term you use?

Organisations like the National Autistic Society refer to autism as a disability whereas the DSM refers to it as a disorder.  But the NHS says that on its own autism is not a disability, but that sometimes, depending on where you are on the spectrum, it may come along with other things that would mean the person was disabled.

 Lots of people make a big deal about not wanting to be referred to as disabled.  They may claim that because they are able to get on with their lives and do other things they can’t possibly have a disability, whereas I would say that autism is a disability.  In some cases it disables you from doing certain things, therefore it is a disability.  In my view, refusing to accept the words disability or disabled simply give the words more of a stigma.  It is basically like saying `if you can still do things and make something of your life you can’t possibly be disabled`.  Somebody like Stephen Hawking is quite obviously disabled; he can’t walk or even move, and is unable to speak now without the aid of a computer.  The fact that he has achieved things that very few other people in the world could achieve, doesn’t mean that he is not disabled – just as being disabled doesn’t mean you can’t achieve those things.  It is the same with people at the Paralympics; they were without question disabled – that’s the whole point of the event – if they are going to claim they are not disabled they may as well just pack up and go home.  Of course there is the whole other argument that people with disabilities should be able to compete in the Olympics, which I think would be fair enough, but that is a different debate. 

In my mind, when people refuse to accept that they are disabled, they give the word all kinds of negative connotations – just accept it and move on – it`s not like people are going to be calling you disabled every day for the rest of your life.  Ultimately words are meaningless, and the only reason they have any power at all is that we give them power with our reactions to them.  If you change the word disabled what do you replace it with?  Disorder is another word that sparks a lot of controversy for exactly the same reasons.  If you use the term differently-abled, you deserve a punch in the face – because it basically means the exact same thing, just in a more patronising tone.  Having said all this, if the word disabled really does distress you, you don’t have to use it yourself.  I can’t think of a time in my life when I have ever referred to myself as being disabled, or of a time when someone has ever directly referred to me as disabled  But I do consider autism to be a disability, and the knock on effect of that of course is that I would be considered disabled. 

I suppose what I really want to try to get through to people is that, yes, to a degree words are important – but they are only as important as you make them.  A hundred and fifty years ago the word nincompoop was considered to be one of the worst insults you could throw at somebody.  Language changes and evolves, and whatever new words come in and replace the old ones, eventually somebody will get offended by them and they will have to go.  It is similar to the debate over the word prostitute – apparently the term now is sex-worker; but that could mean anything; a porn star could be a sex worker.  Pimps or strippers work in the sex industry.  Words seem to go from harmless to offensive all the time nowadays – a lot of words that a hundred years or so ago would have been given as a medical diagnosis, such as idiot or imbecile, are now considered to be insults.  Now, I am not saying that those words should be acceptable, of course not, but it is simply the evolution of language. Some words were used in a clinical sense, then began to be used as slang – and then insults – until they were judged to be unacceptable for their original purpose, and new words needed to be found.  Much the same thing is happening in America with the word retard at the moment – it is a much more socially acceptable word over there than in the UK, and in some places will still be used in a medical sense, but because of its connotations as an insult, it is finally becoming much less acceptable to actually refer to somebody who is disabled as a retard.  I don’t think it`s a bad thing if Americans stop using that word in a clinical sense also.

 In reality it is just the way language evolves; around half of the most well-known swear words today were originally farming terms across England or Germany.  Language evolved, and at some point those words stopped being socially acceptable agricultural slang, and became insults – much the same way that insults from a hundred years ago or so, like brat, became socially acceptable slang.  Certain words are created as insults from the start; in history whenever one race has tried to exert superiority over another, language has always been one of the most powerful weapons – refer to a group of people with words that make them seem less than human and it is easier to do atrocious things to them.  So these words are always considered insults, and understandably so, but what about other words, such as disability?  Well as I say, it`s basically pointless to get offended by it.  I mean if somebody really wanted to insult you would they just say `you`re disabled`?  There are a whole plethora of other insults available, and it is a pretty substandard bully indeed who would fall back on `disabled` as an insult.  I just feel that there are far more important things to focus on than terminology when it comes to the word disabled where autism is concerned.  Autism, no matter how many positives it may bring to your life, will come with its fair share of difficulties – and it is really much better to focus on dealing with those difficulties, without bothering to think about the terminology behind it all. 

 

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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