Tag Archives: tv

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.

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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.

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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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The A Word – Part 3

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

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

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

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

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

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

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

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

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

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

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

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

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.

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 – 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.

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.

(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.

The Long-Term Impact of people with Autism being detained in Hospitals

I am sure anybody reading this will be aware of the various stories about people with autism being taken away from their families, and forced in to hospitals.  But just in case you are not, I will briefly refresh the situation.  Across the country various young people with autism have been placed in the care of hospitals and ATU`s.  This is often against the wishes of themselves, and their families.  The institutions that they have been placed in are not specifically designed to support people with autism, and often very vulnerable people are being placed among those with significant mental health issues, and drug and alcohol addictions, and this is clearly not an appropriate environment for someone who isn`t facing these issues. There seems to be no upper-limit on how long people with autism can be kept in these institutions.  The families are often turned away when they attempt to visit, and visiting in itself is difficult as most of these places are located many miles from the families’ homes.

I suppose what I wanted to talk about in this blog isn’t so much the moral issues, as they have been discussed many times, and it is fairly obvious that it is not right to take people with autism away from their families, and keep them for an extended period of time in an inadequate facility.  What I am really talking about is some of the actual practical effects this could have on the person. This is based on being somebody with autism myself, and imagining the impact that something like this would have on me.

First of all let`s look at why these people are being detained in the first place.: there doesn’t seem to be any one particular reason for admitting them in to hospital; some people are asked to voluntarily stay there for one night, and find themselves still locked up months later.  Some are meant to be there for a few weeks, but are then not allowed to leave – despite their families knowing it is the wrong place for them.  Others are in places that are close to home, and then suddenly taken away to other places, hundreds of miles away, that are not equipped at all.  In reality it all seems fairly murky.  There should be no reason for forcibly taking somebody with autism to any kind of institution, so of course the excuses and reasons will seem flimsy.  Whatever people may try to tell you, autism is not a mental health condition.  Now at this point I feel that I do need to point out that sectioning somebody who has a mental health issue under the mental health act is different – it might not particularly be easy or nice, but sometimes it has to be done if someone is a danger to themselves or others.  But the key point of sectioning someone is that it should be done to ensure the person gets the best support, and care that they can – mental health professionals are supposed to come and check where somebody who has been sectioned is staying, and if their treatment is right for them.  Now people with autism shouldn’t be sectioned under the mental health act as they don’t have a mental health issue.  But even if the person with autism does have a mental health issue that is separate to their autism, the way they are being treated is still wrong.  Parents might have agreed for their children to go to an ATU for example, just for a few weeks so that they can be assessed, and ultimately helped. Consent for assessment and treatment should in no way imply that what has been happening to families up and down the country is ok.

The idea here appears to be a basic level of misunderstanding, and ignorance around autism; somebody is autistic so they are having meltdowns, so they are detained and sent to hospital or ATU – often hundreds miles from home.  They have their time outdoors, and their contact with their families restricted – in a way akin to somebody in prison.  They don’t know when, or if they will ever get out. So let`s do a list: here we have uncertainty, change (routine, location, people, environment) we have sensory issues: sights, sounds smells, we don’t have any of the things that may comfort, or calm a person i.e., particular possessions, or contact with family members and friends.  I think this would provoke a pretty negative reaction in most neuro-typical people, but in autistic people – well I know I would be bound to have some pretty serious meltdowns if I was in this situation.

There seems to be a principle that the more negative aspects of autism can be treated or cured if the person with autism is kept in a medical facility for long enough – this is nonsense.  As myself, and my family can attest to, the only way to help minimise the impact of outbursts and meltdowns is by a lot of hard work being done at home  If you add in all of these other elements you are never going to solve the problem.  There is a huge difference between a specific respite care centre for people with autism, that is fully staffed with competent highly-trained professionals, and allows visiting and freedom of movement for the autistic person, and somewhere hundreds of miles from home that is set up to deal with individuals with complex mental health issues.  It appears that people are trying to treat autism with methods used for completely different issues.  A good way of thinking of this is to imagine yourself turning up to A&E with a broken leg, and finding your arm being put in plaster – when you ask why you are told that the doctors knows best, and you just have to stick with it.  As time goes on your arm is still restricted, and you can feel your leg becoming ever more painful.  You are told that you can have the plaster off your arm as soon as your leg heals.  Because that is a physical example it is much easier for people to understand.  The concept, when it is translated to something inside the mind becomes much more complex for people – simply because they cannot see it.  But for anyone who has any concept of autism, what is happening to these individuals is no less ridiculous or frustrating.

We have established that there are absolutely no benefits to people with autism being locked in ATU`s and Hospitals – often many miles from home – and that this is a very strange, and unpleasant situation.  But if there won’t be any lasting benefits, will there be any long-term effects at all?  Well, there may well be.  Again these are just thoughts from my own head, and I don’t want to imply that these are things that will happen to everybody that is in this situation.  I am again just using the way my own mind works as somebody with autism, and tying to imagine the effects that something like this would have on me.

I know first-hand, again from my own personal experience, and from talking to a lot of other autistic people, that one big change to routine, or one particularly busy social event can have implications that can be on-going for months.  It can cause feelings of sensory overload, which can lead to depression, or severe outbursts, or even physical illness.  And that can be, as I say, from only one event, or particular change.  If we are talking about somebody spending months, or even longer, experiencing these thoughts, feelings and emotional overloads daily, then the idea of how long the after effects could remain is incredibly daunting.  I don’t want to be pessimistic, but the impact of something like this wouldn’t be over quickly for anybody – least of all somebody with autism.

There is also the worry that even though the autistic individual might not have any mental health issues when they are admitted to these places, an experience like this could easily bring on conditions such as depression and anxiety.  These are unfortunately common in autistic people, and are likely to be triggered by their experience.  They might not be present at all before somebody is admitted to one of these places, but they could well become apparent once they have been they are released.

Another unfortunate consequence is the damage that being detained can do to the work that has already been done to help the autistic person.  I know myself – again from experience – that it can take a life-time to build-up certain skills.  The impact that being locked up for so long can have on social and communication, and independence cannot be underestimated.  I can`t say for sure that this will happen in every case, but it does certainly have the potential to knock the skills somebody has developed right back to basics.  So not only it is a completely ineffective treatment, it could also destroy everything the individual and the family have worked for, and achieved.

All of the above hasn’t even taken in to account what the various drugs forced on these individuals could do to them.  The commonly accepted facts about drugs prescribed to people with mental health issues is that they generally would cause some kind of side effect – but that this may be worth it for the positive effects.  The problem here though is that because people with autism don`t actually need these drugs, they don’t get any positives from taking them, and are simply left with the after-effects – whatever they may be.

These are just a few thoughts that I have had as a person with autism, reading about these families.  I am sure there are a lot of other issues that people who are more directly involved in them can bring up.  I understand that at times some of the people who work in these places, and perhaps even the people who arrange for the autistic person to be taken in, might think that they have that persons best interests at heart – as hard as this may be to believe – but good intentions don`t meant anything unless they are backed-up by good and positive actions.  And in this case, actions are definitely speaking louder than words.  Whatever is happening, whatever the justification for it, it is wrong – plain and simple.  The sooner not only the professionals, but the general public wake up and see this, the better.

My new book:  http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum.html/  

Links to families who have been affected by this issue, and campaigns that have emerged because of it:

https://www.facebook.com/JusticeforLB?fref=pb&hc_location=profile_browser

And the LB BILL

http://lbbill.wordpress.com/2014/11/04/lbbill-draft-one-launched/

http://michelledaly.blogspot.co.uk/2014/11/warrior-mum-nina-nis-journey_22.html

And the petition

https://www.change.org/p/nicola-sturgeon-bring-my-autistic-son-tianze-back-home-to-scotland

http://michelledaly.blogspot.co.uk/2014/06/warrior-mum-leos-journey.html

And the petition

https://www.change.org/p/nhs-islington-bring-my-son-stephen-home-care-for-him-in-our-community-bringstephenhome

https://www.change.org/p/wigan-mbc-adult-social-services-and-calderstones-nhs-don-t-send-my-21-year-old-autistic-son-to-another-secure-hospital-assess-him-using-top-experts-we-can-recommend-to-have-support-to-live-in-the-community-and-flourish-as-a-human-being

https://mail.ntlworld.com/mail/u/0/#inbox/1499c361075e8da4

http://justicefornico.org/ (not specifically autism, but still relevant)

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 Rain Man Effect

One of the things that annoys autistic people the most, I have found, is when they tell somebody they have autism, and the person responds with `do you mean like Rain Man?` or something along those lines.  I hadn’t seen the film itself until very recently, but after I watched it I thought I`d write this blog.

 I suppose what it`s really about is whether it`s the portrayal of autism in a film which people dislike, or something more than that.  I personally think that it was quite a good film, and I don’t have any real issues with its portrayal of autism.  The fact is that autism affects everybody differently, and there is no reason that Dustin Hoffman`s character would not have acted and behaved in the ways that he did.  You could take argument with some of the generalisations made by the professionals in the film, but it is a film made, and based in the late eighties when people knew much less about autism than they do now – so it is not particularly unrealistic for medical professionals in the film to make sweeping statements.

 What I think most people take issue with is actually nothing to do with the film itself; it`s the fact that people who may have seen the film once, or maybe even have only seen snatches of it, think that they now know everything they need to know about autism.  They think that everybody on the spectrum will behave in that manner.  It is their only real reference point for autism.  It is that lazy attitude that I think people dislike; as if watching one film tells you all you need to know.

Nowadays there are a lot more portrayals of autistic people in the media.  A few years ago all you used to really see was the random autistic characters who were put in to detective shows so that they could conveniently note down car number plates, or remember details from years before.  These seemed to be characters who were created by people with no real knowledge of the condition – simply recycled versions of older characters.  There was a point a while ago when having characters who were supposed to be quite funny, with obvious traits of Asperger’s`, became quite a popular thing.  I don’t find that offensive, as making people laugh is one of the best ways to get through to them, and make things stick in their minds.  Now you have programmes like Derek and The Bridge; with characters who aren’t point-blank called autistic, but blatantly are.  I would recommend these two shows as a good place to start if you want to learn more about autism, because they portray two people who are on the one hand completely different to each other – extreme ends of the spectrum –but in reality deal with a lot of the same issues.  Also, Derek is obviously male, but displays what is normally perceived to be a very female version of autism, whereas the main character in the bridge portrays what is typically thought of as a very masculine profile of autism.; perhaps the reason why, to the best of my knowledge, neither of them has ever been diagnosed with autism on the shows.

Now I am not saying that if you go away and watch these shows you will have a full understanding of autism, because that would be nonsense.  I don’t think you can ever have a full understanding of anything just from films and books – you need to do research.  And more important that any of those things, you need to talk to autistic people in real life.  The Bridge, Derek, and Rain Man, amongst others, are good portrayals of autism, but because the spectrum is so vast, and complex none of them give you a complete picture.

You also get characters like Roy Cropper in Coronation Street, who is almost a mix of male and female profiles of autism,  Again, I don’t think there has ever really been anything said about whether he has autism or not, but it is fairly obvious to see if you know anything about autism, that he does.  I think that as a lot of people do their learning through what they watch on T.V. or the cinema, the more varied and well-acted performances of characters with autism, or autistic traits there are in T.V. and cinema, the better.  Basically, there is nothing wrong with Rain Man; the problems lies with people judging an entire group of individuals on the basis of one movie.

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