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Why the frustration of planning for Christmas is worth it for autistic people.

For most people the idea of getting time off school, work, or college for Christmas is a good thing, and something to look forward to, but for some autistic people that is not the case. Change of any kind can be hard to deal with, and Christmas is a very strange time of year how ever you look at it. It’s a huge change of routine; breaking up for Christmas is in itself a big change as the normal day- to-day routine no longer applies. You are not going to the same place each day, or doing the same things, and that might mean having to put aside a routine you have spent months working on, and getting used to. Added to that is all the other changes that come with this time of year – some bad and some good, but all change. Places look different if they are done up for Christmas, the food you eat will be different, what’s on TV will change, you might have to spend more time with family, and of course there will be the buying and receiving of gifts. It’s worth pointing out that just because you are autistic does not mean you can’t enjoy Christmas, it just means that all the change might lead to things like overload or outbursts related to sensory overload and meltdowns, it definitely has for me in the past.

That can sometimes be the most difficult part of planning for an event like Christmas – balancing the feelings of looking forward to it with the practicalities of having to plan for it. Ways of planning for the changes that come with Christmas are talked about in more detail in some of my other blogs (which I will be posting links to in the coming weeks) but I just wanted to use this blog to talk about how strange/hard it can be sometimes to put them in to place.

It might be that you love Christmas, that it’s your favourite time of year, and you start looking forward to it months in advance. You might love the changes that come with it: time off school, different food, and presents. But that does not mean that all the change of routine won’t lead to overload and outbursts, and yet even if you know that on a practical level thinking about it might still feel like it’s making Christmas more serious and negative than it needs to be. If you have to draw up charts, and sit and talk/plan everything fun, for example holidays, Christmas or going out then it’s easy to grow frustrated, and to feel like doing that is stopping you from being able to relax and enjoy yourself. It’s hard enough sometimes to have to plan for things you don’t want to do, but having to remind yourself that even fun things can come at a cost can be even harder. But that being said it’s worth keeping in mind that however hard it might be, or however frustrated you feel at having to plan and prepare again, anything that helps prevent outbursts or meltdowns ahead of time is worth persisting with. It might be that you find yourself at a point where you have to make decisions about what you do over Christmas based on past experience, and that might lead to you cutting out things you enjoy. For example you might like the idea of staying up late, but realise that in the past if you didn’t stick to your bedtime routine you tended to have outbursts and be left feeling worse. So you might have to make the call of not doing something you enjoy in order to try and prevent overload and outbursts. Again this might not feel good, and you might end up resenting having to do that, but it’s worth recalling how bad overload and the aftermath of an outburst/meltdown feel. Having to face up to your own limitations is never an easy thing to do, but I have found that at times it is necessary. After all, even though that might sound like quite a serious thing it’s really just about trying to make sure you have a good time, and not doing things that are going to bring you down in the long run.

The other side of this are people who hate Christmas and the holidays, and just try their best to stick to their normal lives, and not get drawn in to it. That’s fine to a point, but it can also be hard to do. If you work you might be able to work over Christmas, but if you are at school/college you will have time off whether you want it or not. You might not decorate your house for Christmas, but you won’t be able to stop everywhere else looking festive; in short you can only block it out and stick to your normal routine up to a point. So even if you don’t want to engage with Christmas, and plan not to think about it too much you might still find that if you don’t plan for it then it will leave you overloaded. Just because you don’t want to be part of a change does not mean you can stop change happening, so it would be worth planning for it anyway – perhaps it would be worth drawing up a chart looking at how things will change, and when they will start to change back. Working out in advance anything you might be doing in terms of going out, and thinking about how where you are going might be different than it normally is, and how this might impact on you.

Whether you enjoy Christmas or not there are two things that can not be denied: one, Christmas is a big change from our normal lives and routines, and two, despite how fun it can be it can also be a very overwhelming time for autistic people. That’s why it’s always worth taking the time to plan for. There are numerous reasons why you might not want to sit down and plan for Christmas, be it that you are worried about taking the joy out of it or that you would rather just ignore it, but in the end it is always best to be prepared, and to try and head-off overloads and meltdowns before they happen. Taking the time to plan and prepare might not make everything perfect, and prevent all overloads or outbursts, but it will go some way to making Christmas time that little bit easier.

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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Why I have been avoiding shows about autism.

Last year I watched The A Word and did a review for each episode, but this year I have not even caught up on the first episode of series two yet. This is in part due to me being busy and having a lot of other things to watch, but it is also due to the fact that I find it quite hard and cringe-inducing to watch shows/films that seek to portray autism. That’s also why I never got around to watching Atypical, despite thinking that I should write something about it. So why have I been avoiding shows with autism in them? And should I keep doing so?

There has been a bit of patten in recent years with The A word, The Good Doctor, Atypical and the Accountant among others all being released to media praise, and a backlash from autistic people. It normally goes something like this: The show/film comes out and gets widely praised for having an autistic character, autistic people let themselves hope it will be done right, watch the show/film only to find out it`s been badly done and is mostly just stereotypes, and react badly to it. We write blogs and post online about why the film/show is getting things wrong, and urge people not to take what that program is showing them as a realistic image of what autism is, then the show`s/film`s creators respond by saying that the show/film is not meant to represent everyone with autism, and can not tell everyone’s story, and that’s the end of it until the next show/film.

Firstly to address some of those points: of course each show and film can only tell one story, and is not meant to represent everyone, but some of the stories we see in film and T.V. do not seem to represent anyone; they are just stereotypes brought to life on screen. Plus you only have to look at the Rainman effect to see what power films and T.V. have over how people see autism and autistic people. Even now, well over twenty years since its release, it is still one of the first things some people go to when they think of autism. It`s not that it`s a bad film, it`s just that lots of people don’t want to look any further in to a subject once they have seen one film or T.V. show on it. They think they understand it now and can talk about it like experts. The truth is autistic people understand that one show or one film is not going to show everything there is to know about autism, but sadly a lot of non-autistic people do not seem to understand this. Therefore those shows/films have a power that most others do not; they will help shape and create non-autistic peoples` views and perceptions of autistic people for years to come.

So when a new T.V. show comes on the air autistic people tend to have a mix of feelings; we want it to be good – why would we not after all? But we also worry that it will be bad. If it is bad then some of us will feel we have to react to it; to keep watching through the cringingly bad attempts to show how autistic people talk, think and feel, to keep watching even if it passes the point of being offensively bad. And sometimes it is worth doing that – you can`t write about something or hold it to account if you have not watched it. You can dislike an idea, but to call out a show or film you do have to sit down and watch it. You have to think about why it`s bad, write that down, edit it and post it somewhere, and that’s the thing – sometimes it just does not feel worth while doing that.

It is always worth autistic people speaking up and challenging poor portrayals of autism on T.V. If we do not do this then who will? And like I said those portrayals, if left unchallenged, will dictate how non-autistic people view autism. But still, having to watch through them can sometimes be trying. It`s hard enough to have to watch bad films and T.V. without falling asleep or drifting off to find something better to do, but when you have to watch bad TV/films that also try and fail to show autism it becomes even harder to get through. It`s hard to put the feeling in to words; it`s not always that things are offensive, although sometimes they are, it`s more that it can just be downright painful to watch sometimes. I am sure we have all seen a film or T.V. show that got stuff badly wrong when showing autism, and if you have then you will know the feeling I am talking about.

It can feel like autistic people are having to say the same things over and over again when talking about how autistic people are shown on T.V. We pick up on the same issues time and time again, and talk/write about them, and yet not much seems to change.

So is it worth watching and reviewing these shows/films?

It`s always worth talking and writing about how autism is portrayed in film or on T.V. Even, or perhaps especially, if it is a bad portrayal. Of course anyone can review anything, but the views of an autistic person must hold more weight when talking about autism on screen. That being said no one is ever obligated to review a show or film. Once you start writing about things like that it can start to feel as if you need to watch everything to keep up with what’s going on, and give your views on every new T.V. show that comes out. But you might not want to; you might be fed up of watching TV/films that frustrate you, but also you might just not have time to keep up with everything. Right now autism is a pretty big deal on T.V. There are new shows coming out about it all the time, and it would be hard for anyone to keep up.

In short yes it is important for autistic people to speak up if we see a bad, negative, or flawed image of autism on T.V. and also to say when people get stuff right, but it`s also totally understandable if we need a break from doing this from time to time. I will try and catch up on The A word, and despite my talk of bad portrayals of autism on T.V. I will keep an open mind going in to it. And while I can`t watch and talk about every show that deals with autism, I do try and read as many reviews of these shows by autistic people as I can.

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

How the media is shaping public perceptions of autism for the worse.

I was planning to write a few more specific response blogs to some of the stories that have been doing the rounds on Twitter over the past few days, but I just don’t have the inclination to sit down and give each story so much time. If you`re not sure what I am talking about let me explain.

First of all we had the autism/radicalisation story in the Daily Mail; a story which implied that autistic people are more likely to become terrorists, and I did take the time to write a full response to this one. Then over the weekend I came across another story, this time linking autism to screen time. In this article a professor of neurology talks about two studies which he claims show a link between screen time and autism. The idea being that some children can develop a type of autism from spending lot of time on Ipads or laptops, and if parents take those away and play with the children more then the autism will go away. A ridiculous story that harks back to the days of the refrigerator Mother, and once again a story written by a professional, based on work by other professionals, that has angered and offended the autistic community.

Then there was a story by writer Kathy Lette, again in the Daily Mail, in which she talks about feeling the need to hire a sex worker for her autistic son as he felt he would never be able to get a girlfriend on his own. As a lot of people on Twitter have already said, it`s not the idea of using a sex worker that’s the problem. It`s the fact there is nothing in the article to suggest that Lette talked to her son about the idea, not even when she came close to picking a women up on the street. It reads as if her plan was just to pick the woman up, turn up and present the woman to her son. Not even going in to the fact that he might not have wanted sex then, or with that particular women, there is the issue of planning. Doing anything that is not planned for, or part of the routine can be hard for autistic people. But something like this should never be sprung on anyone, least of all some one with autism. There is also no input from her son in the piece, and not even a line to say that he is happy for her to write about him in this way. I fully understand that there is a limit on words in an article, and perhaps she did talk to her son both about her idea and about writing the article, but what’s angered a lot of autistic people on twitter is that neither of those things are in anyway clear. It reads as if the plan was hatched and nearly put in to action without him knowing at all. And while this point might have nothing to do with autism, there is also the fact that the writer seems to make no distinction between hiring an escort from an agency, and picking a women up off the streets. From what I understand women working for escort agencies are perhaps less vulnerable, and exploited than women who are forced to work the streets.

All of these articles drew a lot of reaction from the autistic community. There was anger of course, but the overriding feeling seemed to be one of frustration. How many more ridiculous stories about autism are there going to be? We live in a world where, based on one debunked lie from a disgraced former doctor, thousands of people believe that vaccines cause autism. A world where people can go on T.V. and claim to cure autism by changing children’s diets. A world in which some parents will buy and then feed their children bleach because some con-artist has sold it to them as a cure for autism. And not just a world where every school shooting is linked to autism, but now a world where professionals think it`s OK to go in a national news paper, and link terrorism with autism as well.

There are of course other issues: hate crime, so called mate-crime, benefits being slashed, lack of employment for autistic people, autistic people being locked up for years in institutions with no good cause, and there are stories in the media of parents killing their autistic children, and almost being given a free pass by the press due to the stress of `putting up with` their autistic child for so long. I could go on.

It might sound like I am being negative, but I am just stating the facts when I point out the issues that face the autistic community. It`s important to recognise what these issues are if we are ever going to do anything to deal with them, and bring about some changes. But sometimes it does feel overwhelming, and that’s where the frustration comes in. Autistic people want to do what we can to fight against the levels of ignorance in society, but when we see that ignorance floating down from the top levels of the professional world it can feel as if everything we are trying to do is being undone by those who claim they are trying to help us. And it`s not just professionals, it can be some parents too, like those who cling to the idea that vaccines cause autism.

I feel – and this may sound a bit self-serving, but I am not just talking about myself here – but I feel that reading the writings of autistic people is the best way to understand autism. I know when I read other autistic peoples` blogs or posts on twitter I lean more, and recognize more that I never realised or thought of, than I do reading any study or report. And yet it seems that for the most part it`s harder for autistic peoples` voices to break out of the autism community, and in to the mainstream than it is for parents and professionals.

What I mean by this is that autistic writers and bloggers talk a lot of sense, and yet it feels like our voices are mainly being heard by those already in the autistic community. This does not mean there are not some well-known autistic writers in the mainstream such as Temple Grandin, or that nothing autistic authors write gets picked up by the media. But I do think overall it is harder for us to get our voices heard. Where as a professional – and to a slightly lesser extent a parent – can have an idea and no matter how silly it is, or how detrimental to autistic people, it can and often will get mainstream press coverage. Leading to ideas such as autism being caused by vaccines, being cured by diet, or being linked to screen-time filling up peoples timelines, and becoming part of the casual view of autism held by those who are not autistic, and don’t know anyone who is. Whereas genuinely good, thoughtful, insightful, and helpful ways to deal with real-life issues facing autistic people are often stuck within blogs, or on message boards being viewed by only a small amount of people.

It feels as if what you have to say about autism matters more if you are someone who works with autistic people, or a parent of autistic children than if you are autistic yourself. This makes it harder to fight the other battles that need to be fought when those who are meant to be helping you hold so much more power than you do. Even more so when they use that imbalance of power to spread silly or dangerous ideas, and to add to myths and stereo-types around autism.

Often, all the responses to articles like the ones I talked about above will only be read and spoken about in the autistic community, whereas the articles themselves are out in the mainstream.

So what? You might think that as long as autistic voices are being heard by autistic people what’s the big deal?

Well it`s the mainstream that shapes the view of society as a whole, that gets read by the next generation of parents and professionals, and helps to shape their view of autism and autistic people. And I, for one, would rather have those views shaped by the writings and thoughts of autistic people themselves.

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

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?

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

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

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

 

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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The A Word – Part 3

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

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

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

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

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

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

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

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

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

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

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Employable me

(Note: I have yet to watch this weeks episode)

For the last two weeks I have been watching Employable Me – me and seemingly everyone I follow on Twitter.  I just wanted to write a quick blog to discuss some of my thoughts on the show. When I first sat down to watch it I have to admit it was with a certain amount of trepidation. Whenever I watch anything that deals with autism I always have that mix of feelings; hoping it’s going to be good, but ready to cringe if it’s not.  But I am happy to say that so far Employable Me has not made me cringe at all.

We already know as autistic people, or as the families of autistic people, just how hard it can be for someone with autism to find work. Not everyone of course, and some people have no issue getting a job.  But for most autistic people it is hard.   A lot of that hardship comes not from their autism, but from the attitudes of employers.  It’s good to see that the show deals with this.  The main point for me, and one the show seems very keen to make, is that autism will not stop you working, but pre-conceived ideas about autistic people might.  Now that being said, I know for some people their autism might stop them from being able to work, but what I mean is that not everyone who is autistic will be unable to do so.

People by and large, whether they are autistic or not, want to work. They want to feel as if they can take care of themselves, and their families, and that they do not have to rely on the state to take care of them – that they are not at the mercy of changes to benefits. Getting a job can have all kinds of advantages for anyone, but for autistic people it can also provide routine, and a sense of independence. Not only that, but it’s clear to anyone who knows anything about autism that at times it can benefit an employer to have autistic people working for them. I have written a lot in the past about the positive traits that can come with autism. Such as an eye for detail, dedication and creative thinking.  And it’s good to see that the show highlights these instead of just trying to make us feel sorry for autistic people.

Overall I am enjoying the show, and I can see why it is going down so well among autistic people. It highlights a very real and important issue that a lot of autistic people face.  An issue that lots of autistic people have been trying to draw attention to for years now.  Putting it out there in the public eye must be a good thing. Another thing that I enjoy about the show is that is manages to portray how funny things can be without feeling like it is making fun of autistic people.  It is funny in parts because that’s just how life is. But despite that is does not feel as if it is set up to make light of people, and their autism. I plan to keep watching it, and see how it goes on.  Hopefully it will continue to be good.  Let me know what you think of Employable Me down below.  Do you enjoy the show?  Tell me what you like or dislike about it.

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The A Word – Part 2

I watched the second episode of The A Word last night and I have to say I continue to enjoy it. It is true that some people with autism do have an issue with the show, and I don’t want to downplay what they feel, but from my point of view the show does a good job of portraying how most real families deal with this kind of news. Sure not everything they do or say is something I agree with, or like. But it`s a TV show. While we as autistic viewers know that Joe is not broken, or abnormal or damaged, his family are still trying to understand that. Even though some of the characters might say or do things that seem silly, over the top, or just plain wrong, that’s just an echo of what a lot of real life families do or say. Below are a few things that jumped out to me about episode two.

Standing on his own: Joe`s Mum watches as her son runs out of the class room for break, but instead of going to play with his fellow students he races over to an empty spot, and stands there lost in his own thoughts. This took me right back to my childhood. Even though I was home educated from age seven, for the few years that I did spend in school this was me. I would run out of class as fast as I could down the length of the playground to my spot. Most of my breaks were spent balancing on a pipe tucked away in a wall just thinking my thoughts, and watching the world go by. I was not unhappy, in fact it was the best part of school, but if anyone else was in my spot I had no clue what to do, or where I could go.

Homeschooling: As I have said I was home educated from seven to fifteen, when I went to college. The main point the show made about homeschooling was this; you should try and make what the autistic person wants work, and not try and force them in to doing something you think is best for them. Joe`s Mum was worried he would not fit in, or that he would be looked down on, but the point is he wanted to go to school. I wanted to be home educated and my parents made it work for me. I don’t think homeschooling is a bad thing for anyone, least of all autistic people, but as I say the point the show made was about doing the right thing by each individual, and respecting what autistic people say and want.

Playing the same part of a song over and over: This is something I know a lot of autistic people do. First of all playing the same song the whole way through can be a relaxing and soothing thing, but it can be more than that. Often songs or even parts of songs inspire me to think, to see stories in my head, or to plan out something I am going to write. It`s not uncommon for me to listen to one or two songs on repeat time and time again when I am working on something. I don’t often play the same line over and over, but I do know lots of people who do.

Could anyone else have autism? The Granddad of the family is very blunt, and does not seem to understand when he should talk, and when not to. He is often being told off for saying or doing the wrong thing, or saying something at the wrong time. It might be that he is just rude, but he seems to mean well whatever he says, and it could be the case that he is written as undiagnosed autistic. Something to keep an eye on as the show moves on anyway.

Walking by himself: This is one thing I do not understand. Joe is five years old, and yet they seem happy to let him walk off by himself every morning before they are even fully up and awake. It struck me as odd that they knew he was off walking, and yet just assumed that he would be brought back to them.

Ashamed: The main plot of this episode was how the parents reacted to Joe being autistic. How they became more aware of the things he did, and how that made him stand out. But also how far they still had to go to fully understand him. Because it seems to me – and I am talking only as someone with autism, not as a parent – but it seems that most parents go full circle; they start off just thinking their child is a bit different, but not odd or damaged. Then they find out he/she is autistic and panic for a while. Then after trying things out, getting things wrong, being unsure if they have done something wrong, fearing for their child and even being ashamed of their child or on their child’s behalf, they get back to the start – that there is nothing wrong with their child, that their child is not broken or damaged, and he/she is just who they are. And then they feel ashamed for feeling ashamed in the first place! That might not be true, but perhaps if you`re a parent you could let me know if it is or not? The point is that while I as someone with autism might not agree with how parents often feel, I can’t pretend that they don’t feel that way.

Over all I feel that this was a strong second episode that had a lot of truth in it, and was relatable for me as someone with autism. I don’t always agree with what the parents say, but truth be told I often don’t agree with what a lot of parents say in real life! People get stuff wrong, when their child is first diagnosed most of all, so the fact that the programme shows that, and does not attempt to gloss over it, is good. I am still enjoying the show, but I would like to hear from you. What do you think of it? If you like, or dislike it tell me why.

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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.