Tag Archives: controversial

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

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

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

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


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

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

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

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

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

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

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

But it’s not just lazy.

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

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

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

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

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

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

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

People with Autism Spectrum Disorder may be vulnerable to ISIS propaganda

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

Inspiration Porn – an autistic point of view

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

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

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

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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

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

Autism, theft and anxiety …

On Saturday I received a bank statement, and a letter from my bank telling me that their fraud department needed to get in touch with me. They wanted to check if some recent transactions had actually been carried out by me. After looking at my bank statement it became clear that the last five transactions on it were not actually mine. And in fact I had no idea where the money – which amounted to over one thousand pounds – had gone.

Crimes like this are fairly common place, and I wouldn’t normally feel the need to write a blog about something like this, but what did make me want to blog about my experience on Saturday was the fact that the actual crime itself, and any stress or anxiety caused by that, completely paled in to insignificance compared to the stress and anxiety of having to interact with people to get things sorted out. My first thought on seeing that the money was missing was not actually one of concern for what had been taken, it was a feeling of concern and frustration because I knew that even if this were resolved quickly it would still completely ruin my usual Saturday routine. This did turn out to be the case. Me and my Mum decided that the best thing to do was to walk to our local bank and raise the issue with somebody face-to-face so we got ready, and prepared to go out. My anxiety levels rose higher and higher as were getting ready, and walking to the bank. In the back of my head there was a mild anxiety about what would happen to my money, but as I say I assume such crimes happen all the time, and I was pretty confident that I would end up getting the money returned to me. There was still some mild anxiety around this as I wasn’t certain at that point. But that had nothing to do with the rising anxiety and stress. This came solely from the fact that I had no clue what I would need to do, or who I would need to interact with when I reached the bank. Would they be male or female? Young or old? Would we talk in an office? Would they ask me questions I didn’t know the answer to and put me on the spot? I had no clue. I knew that I had no choice but to go to the bank, and in a way I think that helped. There is always an option of course, but I wasn’t going to sit at home and simply let more money be withdrawn from my account. In terms of interaction within the bank it was fairly easy – my Mum did most of the talking – the only challenge being that we had to talk at the counter, and I was keenly aware of people standing behind us. We were advised on what to do and told to return home and call the fraud department immediately. There was an option to use a phone within the bank to do so, but we decided against this. Again it was public, but also I felt it would be impossible to concentrate in a busy environment such as that.

Far from being over, my anxiety levels began to rise even higher as we walked home. I should explain; I don’t speak on the phone, even with family or people I know well. And whenever there is any official business to sort out that can only be dealt with via a phone conversation I give permission for my Mum to speak on my behalf. But as I walked back from the bank I had no clue whether they would need to speak to me, perhaps simply to gain my permission to speak to my Mum, or even if they would insist on talking to me for the entire conversation. It wasn’t just the fact that I might have to speak on the phone, it was the fact that I didn’t know. I didn’t know who I would be speaking to, or what they would be asking me. In the end I did have to speak on the phone, only to answer a few basic questions and give my consent for them to speak to my Mum. This in itself was not an easy experience, but I will go in to more detail in another blog. After that phone conversation everything was resolved. They dealt with it quickly and efficiently and as I say I assume it is something they deal with every day. But the impact of the change of routine, stress and anxiety created on that day are still affecting me even now. I can’t say that it has nothing to do with the money being stolen – that would be silly – but in all honesty I think that is ten percent of the cause. The other ninety percent is to do with uncertainty, social interaction and change of routine.

This is one thing I have always found difficult about my autism; even if I myself react calmly to a situation, and I don’t feel particularly disturbed or distressed by it, there will always be something that comes along with that situation which brings anxiety and stress. I think a lot of people would find it hard to understand how little the theft of the money actually affected me. I assumed even when I saw it was gone that I would get it back, which I have. If you had seen me on Saturday you would have seen somebody who was clearly highly anxious, and no doubt you would have assumed it was due to the theft. But as I say, you would have been wrong.

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

Twitter https://twitter.com/ASKPERGERS

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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

Managing Sensory Overload …

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

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

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

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

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

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

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

Twitter https://twitter.com/ASKPERGERS

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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

 

Autism, Overload and Bad Advice.

It is very common for people with autism to become overloaded, whether this is a sensory overload, an emotional overload, or a mixture of the two. Depending on what a person is doing in their life this may happen to them every few months, or every day.  Once someone has become overloaded it can become impossible for them to do even the most basic of tasks.

An overload will bring on both physical and mental fatigue.  This means that however much the person might want to be getting up and getting on with things, they lack the energy, or the capability to perform tasks that normally they might not even think twice about. There is one piece of advice that many people who are experiencing an overload are given by well-meaning people who genuinely believe that this advice will help – and that advice is to do more; to get out more, or to start new activities.  So what is the problem with this you might ask?  Stimulating the brain can often be helpful in replenishing peoples` energy supplies, but the problem is this; if you don`t even have the energy to do the things you want to do, then how are you meant to find the energy to do things that would be hard for you anyway, such as leaving the house to go outside.  Or doing some kind of new social activity.  The answer is that you probably won’t be able to find that energy because it quite simply isn’t there.  I completely understand that for non-autistic people a low mood can be cured by getting out and about, or trying something different.  But an autistic overload is not the same thing as a low mood.  It is like being in a video game and having a low energy bar.  If you go on to try to complete some task with almost no energy you are going to fail.  What you need to do is have a more tactical approach; plan a way of getting your energy up. Take the time to reset and relax and give your mind a break.  Cut out unnecessary sensory input, and build up to being able to do the things you would normally do.  Then if you are able to do those things you might think about expanding, and trying to get out more and do more.  But if you don`t have the energy to do more than go from one room of your house to the other all day, and even the idea of going upstairs and shaving or showering is something you have to build up to over hours or even days, then going out and doing something that even when you weren’t overloaded would be incredibly difficult, is not really a sensible way to make the situation any better.

I do enjoy going out and doing things, getting out of the house and having new experiences. But doing so always leaves me feeling overwhelmed and overloaded.  So I have to be in a good frame of mind and a good place to actually be able to attempt those things in the first place.  There is a saying that I have never really understood, and that is to fight fire with fire.  I am sure I don`t need to explain to anybody reading this how stupid that phrase is.  If you throw fire on a fire you end up with a bigger fire.  If you throw water on it you put the fire out (depending on the type of fire).  It might take a while, and it might be a hard task, but you get a result.  If you are overloaded do things that you know will calm you down and relax you.  It might be that going out to some places, perhaps to walk in the park or to the cinema at a quiet time of day does relax you.  In which case go for it and do whatever works for you.  My point is, don’t be surprised if most neuro-typical peoples` response to you feeling overloaded is that you need to get out of the house more, or you need to be doing more things.   It is not that the people who suggest this are stupid; this probably works for them, or their non-autistic friends because they don`t experience overloads in the same way that you or I might.  Sometimes an overload can appear to be the same as a low mood, or a lack of motivation.   But it is not that.  When I am overloaded I don’t need a motivational speech, or a meme telling me I can do anything I set my mind to.  I need to give my brain a break.  It is important to listen to the advice of those around you when you are in a difficult position, and to consider it.  But just remember, you don’t actually have to take it. You need to listen to what your body and mind are telling you, and do whatever you feel is best to make yourself feel better.

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

 

The A Word – Episode 6

The first season of The A Word came to an end this week, and it’s fair to say it’s been more than a bit controversial with autistic people. If I have chance I would like to do a blog just talking about the show as a whole, and what impact I think it might have on autistic people, and how they are viewed. But for now I just want to address some things that I picked up on while watching episode six.

Joe is overloaded again: At the opening of the pub it’s clear that Joe is finding it hard to cope. The family said that he was enjoying himself, but it looked to me like he was overloaded with all the noise and talking. I think the programme was trying to show this, even though the family did not understand it.

Joe runs away:  No shock there. I mean he walks off, it`s what he does.  But this time because he left from someone else’s house, and not theirs’s it becomes a big deal. It also becomes clear in their hunt for him that they had no clue where he was going in the mornings.  It becomes apparent that he had been going to the lake, but the parents had no clue about that. I understand that him running off, and them not knowing where he is, is a big deal.  Of course it is!  But it’s not that much different from what happens every morning.  It’s just that there is less chance of him bumping in to someone he kind of knows.

Reaction: When they tell the police chief that Joe walks around by himself in the morning he seems shocked, but they also play it off by going on to say that Joe is autistic.  As if that somehow explains away why he is out by himself so much.  As I have said before that’s not OK for any child of that age. I think most police officers would have something to say about it.

Embarrassment: The whole family seem to cringe with embarrassment when they think about telling anyone else that Joe is autistic. It’s something they have avoided at all costs over the run of the show.  Again it’s not an issue I have with the show itself as I can imagine some people would react in this way.  In fact the issue of parents worrying about their kids being labelled as autistic, or odd is a big one. But this is how I see it; people bully, and they make fun not because someone has a condition, but because of how they behave. Joe will get picked on at some point just for being quiet, or liking the music he likes, or how he opens/closes doors before he can go through them. Not being labelled as autistic will have zero impact on that.  Also I think when they try and hide it they make his autism something to be ashamed of. Something that should be hidden away, and not talked about. In fact it’s nothing to be ashamed of, and it’s just a part of who he is. The fact that they even debate it when they know that telling people might help to find him is poor parenting in my view. But again I think it’s a fair reflection of how some people might behave in real life.

Witch hunt: A man with Downs Syndrome is the last person to see Joe before he goes missing. He is questioned quite a lot, the implication being that because he is disabled people are more willing to believe he might be a risk to people. I think it’s fair that he be questioned – I mean anyone should be if they are the last person to see a missing child – but I do think it’s over the top that they took his laptop, and to tell the truth I am not even sure they would be able to do so within hours of Joe going missing. The point that disabled people can become victims of police and community witch hunts is a valid one. Over the years countless disabled people have been forced or tricked in to confessing to crimes they have not committed.  Autistic people often fall foul of this, and that is a point well worth making.  As I say, it might be a bit over the top in the show as it all happens within such a short space of time, but that’s just what happens when you have to tell a story in a one hour show.

They say they don’t want to change him: While they are hunting for Joe his Mum says that she just wants him back.  Just the same as he is now, and will stop trying to change him if she finds him. It seems that they might be learning. They also use Joe’s music to help find him, thereby showing that they understand how to communicate with him on his terms.

Grief:  After Joe has been found he is in bed with his Mum and Dad. The Mum goes to take off his headphones, but the Dad asks if she can leave them on for a bit. Then when he knows Joe can’t hear him he goes on to talk about how he feels grief as there is a boy stuck inside Joe who they could have had as their son. Again I don’t mind the show putting this in as a lot of parents and professionals say it.  But I still have to talk about it, and how wrong it is.  There is no `child you should have had`.  Think of it this way: If a grown man imagined when he was younger that he was going to marry the best looking woman in the world, and he spent a lot of time imagining how his life would pan-out with this made-up women, and all the things he would do with her. He hits thirty, and ends up married to a normal looking woman, and realises that he is never going to be married to the best looking woman in the world, or be able to do all the things he made up in his head.  So after they are married he turns to his wife and says. “I love you, but you need to give me some time to grieve for the wife I should have had.”  Just think about how you would react if someone said that to you. The fact is there never was anyone to grieve for – the parents haven`t lost anyone.  All that happened was life turned out differently than the image they`d had in their heads. That tends to happen. You need time to adjust to that, fine. But it’s not, and never should be, time to grieve for someone who only ever existed in your head.  But like I say I don’t mind the show bringing it up as it is something people would say in real life.

So those a few of my thoughts. What did you think of episode six, and of the show overall?

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The A Word – Episode 5

Once again I am late with my A word blog, but I caught up on episode five today. Below are some of my thoughts on the penultimate episode of the show.

Joe out walking, again!: Yes this is something I say every week, but the more times I see it the more times I feel it is worthy of comment!  A five year old boy should not be walking down a road on his own.  But more importantly than that I feel it’s just bad writing.  Joe`s Mum and Dad are set up to be worried about him. They fear for his safety. They don’t let him take risks. At least for fifty eight minutes of each episode they don’t.  The opening shots just undermine all the writing that was done building them up as characters. They just wake up, and don’t worry about where their five year old son is, and just wait for someone to bring him back. Now no five year old should be allowed to do this, but it is true some vulnerable autistic people do get out of the house and walk off.  And it’s a big issue. People die from doing this; in some cases young autistic people walk off, and are never heard from again. Nothing else Joe does is that bad; it’s as if his parents want to change the things that impact how people might view him, but not the things that might impact on his life. That might be OK, and the show might be set up to be a tragedy where they spend so long trying to change the things that make Joe who he is, and ignoring the huge life-threatening issue that he ends up being hit by a car. But again that’s just bad writing; someone would say something about a five year old walking down the road by themselves – if not anyone else at least the police officer who picked him up.

Maya getting deported: Maya getting deported does two things in the show:  One, it opens up a whole new argument about how to deal with that situation, and what the best thing for Joe is.  And two, it looks like it sets up Joe going missing in the final episode, with no one to find him when he walks off.  It’s clear that Joe likes Maya, and she seems to communicate with him in a way that he understands, through music. She does not try and make him do the things he can’t do, but instead she works with him on the things he can do.  Also introducing your kids, autistic or not, to Motorhead at a young age is just good parenting.

Alison needs to be in control of everything, and can’t be told no: Just look at how episode 5 starts. Her son is brought back to her in a police car.  Her reaction? To have a go at the police officer who brought her son back. She then pushes Joe on to her sister-in-law despite the sister- in-law needing to get to work.  And then later on she tries to bribe a police offer to let Maya stay, and seems genuinely offended when he tells her no. For me this is not good parenting. Good parenting is finding out what your autistic child wants, and doing what you can to help them get it. But not to the point of breaking the law, or manipulating and bullying other members of your family.  Most of what she does seems to be more about her wanting to get her own way.  Just think about the photos. It’s not that Joe at any point seems like he wants to look at them, but cant.  It’s just that she thinks he should be doing it. She is, as has been hinted at in the show, a bully. She seems to be using Joe as a smoke screen to control those around her, and get her own way.  In truth I am not even sure that she realises that’s what she is doing. When the police officer brings her son back – a son who was walking down a road on his own, and was then found by the officer in a car with two men who were not related to him – he also brings her bad news. So instead of thanking him for doing her job, and keeping her son safe, she puts him down and bullies him, making out he is somehow in the wrong.  Then again when she fails to bribe the other officer, she does the same. She is too embarrassed to admit Joe is autistic, and yet she tries to make out as if the police offer is the one in the wrong for not taking a bribe.  Over all it`s not that I think she is badly written, I just think she is written not to be the hero of the story, but to be in a way the villain of the piece.  She is not nice to the rest of her family.  She does not take Joes needs in to account, but instead looks at her own needs, and how to change him to suit them.  She bullies, lies, and manipulates those around her, and hides behind her son`s autism to get away with it.  Good character, bad person.

Overload: It`s clear Joe is overloaded by everything that’s going on.  I think this was dealt with OK in parts, but he seemed to get over his overload quite fast.  Holding his hands over his ears in the school was well acted, and not a wholly untrue representation of what an overload is like.  I have to say that as things like emotional and sensory overload affect everyone in different ways there was nothing hugely wrong about the parts where Joe was overloaded, but I don’t think anyone comes down from an overload that fast.  What do you think?  Did it ring true for you, or not?

They need to talk about change in the right way: So Maya is leaving, and Joe`s Mum wants him to say he understands, and talk about his feelings while looking her in the eyes, and his Dad wants to pretend it’s not happening. Neither of those are good ideas.  It needs to be talked about a lot. Perhaps things need to be written down for Joe; things such as how life around the home will change when Maya leaves. There is no need for him to look in his Mum`s eyes as she does this. It’s OK if he does not talk a lot, or even at all as it`s clear that he is able to understand most of what is said to him. Now if this had happened in the first episode I could understand neither of the parents having a clue how to deal with it, but look at all the reading the Mum has been doing about autism. I am sure some of that would have talked about how big changes can impact on someone with autism, and how they need to be dealt with.  And also about how it’s not OK to force your kids to make eye contact with you!

A normal baby: One part of the show that some people might take issue with is when the Dad says that he wants to have a normal child. Now this is clearly not a nice thing to say, but I can understand why it might be in the show. I am sure there have been a few parents over the years who have said something like that, and later regretted it. Like I say, I have no sympathy for people who feel that way, but I can understand why it is something that would be written in to a show.

Joe missing? So it looks like in the final episode Joe will go off walking by himself, and get lost. What a shock.  Let’s see what happens, but to tell the truth so far it feels like a very lazy, badly written set up.  Which is a shame because I had high hopes for the show at the start.

So over all what do I think?  Well the truth is I don’t know.  I don’t mind the fact that the show is about people who in my view are poor parents, who don’t get autism, as long as it leads to something. People make mistakes, and I understand this, but I feel it is more than that.  I would like the series to end by showing how misguided, and wrong the parent’s view of Joe’s autism is.  Some of the writing has been poor, but overall I don’t think the show is bad. It would be fairer to say it’s getting more and more frustrating each week. What do you think?

What do you think? Let me know in the comments.

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The A Word – Part 4

This weeks episode of The A word is likely the most controversial one yet. It`s easy to see why lots of autistic people are upset by some of the things that happened in the show. But I am still enjoying it. Below I let you know why, and what stood out to me watching this weeks episode.

Joe still walking out on his own: So this week a stranger noticed that Joe was walking down the road on his own, and got out of the car to try and help him. The first person with any sense! He still got shouted at for trying to help. He grabbed hold of Joe, but he was genuinely trying to help. I enjoy the show a lot, but I still can’t get why any parents would be cool with their five year old child walking off alone down a road.

Sleepover: Joe`s Mum volunteered to help out in his school to be able to keep an eye on him (something I know more than a few parents have done over the years) While she was there she noticed he was kind of playing with two other boys. She seemed to pounce on this, and invited them both for a sleepover almost right away. It seems like Joe was getting on quite well with them in his own way. It might have been that he was happy to just sit back, and let them do the talking, or to just play a few games without much talking, or change, or rules. I know I had a few friends when I was younger who I played with. But I was never keen on the idea of a sleepover. It seems to be again his Mum trying to force something that he does not want, or need help with. But that being said I know many parents do put a lot of work in to making sure their autistic child has friends if they want them. I guess the key here is making sure what the parent is doing is what the child wants. In the show the parents were not led by what the children wanted to do, but instead tried to force them all to play in a way that they felt they should be playing.

Fever: Joe had a fever, and during this he, in the eyes of those around him, becomes less autistic. He looked at photos and showed empathy as well as talking a lot more, and not using his music to block people out as he does normally. Of course it’s not the case *that he became less autistic; autistic people feel empathy anyway, and they do not become less autistic at any time. Now I don’t know much, if anything, about the idea of people appearing less autistic if they are ill, but I did see a few comments from people on facebook saying they knew it was true. I have two ideas about this:. One is if someone has a fever they can ramble, and say all kinds of things. Even if they find talking hard, or don’t normally know what to say they might be talking without even really being aware of it. It`s the same with empathy; it`s not that autistic people are not empathetic normally, but we might not know how to show it. A illness might make us just speak without fully knowing what we are going to say? I don’t know in truth. But everyone acts differently when they are ill, so it might well be that some autistic people do act differently if they have a fever, but that does not make them any less autistic.

Joes Mum thinks his autism is gone: In a way you can understand why; her son is doing, and saying things he never has before; things that she has read. or been told that he will never be able to do But we all know that autism does not just vanish over night. The thing is, a lot of parents seem to wish that it would. And even though I might not like how happy she was when she thought her son was no longer autistic, I can’t say that it`s not a realistic portrayal of how some parents would act or feel.

Is the real Joe trapped underneath his autism?: In a word, no. That’s not how it works, as I am sure you know. Autism is a part of who we are, not something that invades from the outside, and blocks out the real us. But again, even though the views are wrong, they are views that are echoed in real life. The thing here is to understand that just because someone on a show says something that is offensive to autistic people that does not mean it is the message of the show. My hope is that by the end of the show the family will have more of an understanding of what Joe`s sister already seems to know – Joe is just Joe. The autism is part of who he is. It`s a key part of how he thinks, feels, and views the world.

Morning after pill: There was one moment in the show that made a lot of people feel uncomfortable. That was where Joe`s Mum takes a pill only after he has started to come back to normal after the fever . His Dad seems happy to try for another baby anyway, but it is clear that his Mum does not want the risk of another autistic child. Once again, even though the action itself is deeply offensive, that does not mean the programme is bad for showing this. I was very lucky to have two parents who understand autism, but not everyone is so lucky. There are parents who get it wrong, who have a negative view of autism, and there is nothing wrong with showing that on TV. Not everything works out well, and it`s OK to show some of the more negative things that some parents can do.

So overall I am still enjoying the show. Joe`s Mum has to be one of the most irritating people I have watched on TV for a long time. Not that she is not a good character, just that she does all the things you should not do if you find out your child is autistic. But like I say, I don’t mind this as there are some parents like her in the world, who do things thinking it`s all for the best, when in truth it`s because they are scared to admit the autism is here to stay.

What do you think? Let me know in the comments.

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Light it up Blue – but for who?

Why are we asked to Light it up Blue on Autism Awareness day?  It’s something not a lot of people take the time to think about. All around the world buildings are lit up blue, but many people don’t know what the point is. They know it has something to do with making people aware of autism so they assume it’s a good thing, and think no more about it. So why are we asked to Light it up Blue during Autism Awareness month?  And is it a good thing?

The idea behind Light it up Blue comes from the organisation Autism Speaks, and that’s something I will address below. First of all why blue? Well according to the co-founder of Autism Speaks, Suzanne Wright, it’s because four times as many boys as girls are autistic. Now putting aside any feelings I might have about Autism Speaks for a moment, let’s say that they created Light it up Blue with the best of intentions.  Even if they did we have moved on from the idea that autism is something that only, or even mostly impacts on males. I get angry now when I hear people talking about how few girls have autism.  What I say is that only a small amount of women who are autistic have been diagnosed.  It’s not about male or female autism.  It’s about how that autism is shown, or how well it`s hidden i.e. coping strategies.  My view, and the view of an increasing number of autism experts is that it is likely just as many females have autism as males. There is nothing wrong with women using the colour blue, it’s just a colour after all, but if the idea of the movement comes from something we now know not to be true, then whatever you think about Autism Speaks you might feel the idea is a bit outdated.

But what about Autism Speaks themselves? Well as I am sure many of you know there is not a lot of love for them among most autistic people. The feeling is that while they do raise awareness of autism, they do so in a negative way. They spread a feeling of fear, and the idea that autism is an epidemic, and something that needs to be fixed. When you watch their videos they only serve to reinforce this sense of autism being deeply negative. It is talked about in the same breath as cancer or AIDS. I feel the same way as a lot of other autistic people; awareness is a good thing as long as it is making people aware of the truth. Yes autism can be hard, and it makes my life harder than it might otherwise be, every day of my life.  But it is not a wholly bad thing, nor are autistic people broken, or in any way less than anyone else. It`s fine to tell the truth about the parts of autism you find hard, but to say that autism itself is bad, and that everyone who is autistic is suffering, and needs a cure is not OK.  I don’t want to turn this in to a blog about Autism Speaks, but it’s worth taking the time to look in to why a lot of autistic people don’t feel Autism Speaks is speaking for them.

The issue for me is this, that most people who Light it up Blue don’t think about any of the things I have just talked about.  All they want is to do something good, something that will help someone in their family, or other autistic people. So I don’t want anyone to think I am having a go at them, or that I will look down on them if they do Light it up Blue! The point of this blog is this – try and think a bit more about why something is being done. What the meaning behind it is, and if that is the best way to help autistic people. I am not saying I have all the answers, but if a lot of autistic people themselves have an issue with something that is meant to benefit them, then it might be worth thinking of something new. Without all the facts and figures I can’t comment on how much an awareness day/month, or any one campaign helps the day to day lives of autistic people. But what do you think? Is it good that the most prominent thing on autism awareness day is run by a charity that a huge number of autistic people don’t like at all?

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The A word.

(Note: This blog was written a few days ago but I have only been able to post it now.)

I am sure most of you know of the new drama about autism on the BBC. A lot of you have watched it, and have fairly strong views one way or the other. Now it’s always a risk coming out and making a statement about a show after one episode, but I am going to take that risk, and say that I enjoyed the show.  I also had no issue with the way it handled autism. But I hear the complaints so I thought I would write a blog on my thoughts around them.  Keep in mind I don’t know how the show is going to pan-out, and it might all be downhill from here, but so far, after one episode this is what I think of the complaints being levelled at it.

Not true to life for autistic people: This is a pretty big one. I have heard it said by a few people that the show is unrealistic and shows a lightweight version of autism. But as anyone who knows about autism can and will tell you, it presents in many different ways.  Autistic people are not carbon copies of each other.  In fact we are a mix from a wide pool of traits that make up the spectrum.  I might not have been able to see huge amounts of myself in Joe the five year old boy diagnosed with autism in the show, at first, but the more I watched the more I did see my Mum in him.  Lots of people miss out on a diagnosis of autism in their youth as they don’t tick the classic boxes.  People who don’t meltdown much, and turn most of their feelings inwards can end up almost drifting through life unnoticed, as their silence is often taken for compliance, and not distress. There is an idea that this is somehow `Female autism`.  That of course is not true, and males I am sure are just as likely to present this way as females. I liked the fact that the show did not go down the classic young autistic boy route.

Very quick diagnosis: It’s true that no one gets diagnosed as autistic that quickly. The waiting list alone can leave people hanging on for years. But this is where you just have to understand it’s a TV show.  To film a two year wait for an appointment and then a six month wait for the results would hardly make gripping TV.  Plus what it would mean in terms of practicalities for drama and the cast. Call it artistic license.  But saying that the show starts part way through the assessment, and for all we know he might have been on a waiting list for months or years before the start of the show.

Attitudes: The fact that there are negative or fearful attitudes to autism in the show is not in any way a bad thing.  Are some of the family members in the dark about autism?  Yes.  Do they use poor and negative language about it? Yes.  And are they upset and fearful when they find out their son is autistic?  Again yes. But that’s not a bad thing. It’s a true reflection of the way a lot of real life families feel, talk and act.  Yes it is a shame that in 2016 it’s still a realistic reflection of how real people can view autism, but showing us what we know to be true does not make a show bad.  Plus you need to keep in mind that this is not just a show for us. By us I mean autistic people. Lots of the people watching this will not be autistic, and might not know anyone who is. Therefore their views might match the views in the show.  To turn around half an hour in, and ask people to change views they might have held for years just won’t work. If the show goes the way I think it will then the views of the people in the show will change.  Think of it as a helping hand for people who are set in their views about autism, or have little to no understanding of it.

So was there anything bad about it?

So far there is nothing about the show itself that I did not like. But again keep in mind we are only one episode in and my views might have completely changed by this time next week. The one issue I did have was when the doctor said she would never call anyone on the spectrum autistic. I did not get this bit at all as if you are someone with autism, then you are autistic.  I guess some people might like that, but for me it seemed a bit odd. However, many professionals do prefer to use person-first language when describing autistic people as in `person with autism. So it must have been trying to show this. Even though it’s not something I would do, I don’t have any issue with it in the show as it fitted what the professional would have said in real life.

Over all I enjoyed the show and I am keen to see how it progresses. I would like to know what you think though.  Did you enjoy the show, or hate it?  How do you think it handled the subject of autism?  Let me know. I might blog about this again next week to see if I still feel the same, or if my views have changed.