Monthly Archives: April 2016

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.

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 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

Light it up Blue – but for who?

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

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from something we now know not to be true, then whatever you think about Autism Speaks you might feel the idea is a bit outdated.

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

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

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