Tag Archives: think

My Discovery of Autistic Pride Day

Apparently on Saturday it was Autistic Pride day.  I have to admit I had no idea about this, and only realised it existed due to the tweets I was reading on Saturday afternoon.  This is why I am only posting about it once, and late.

Of course never having heard of it, when I started seeing people tweet about it, I wanted to find out more.  What is the idea of the day?  Why is there such a thing as Autistic Pride?  And might it be something I am interested in the nest time it comes around?

From what I can understand the notion of Autistic Pride day, or at least the way people choose to use it, is almost to counteract the effect of Autism Awareness month.  Not to imply that in itself is a terrible thing, or that all of the content put out during that month is bad.  But what you do find is that there tends to be a lot of conflict; some people want to `Light it up Blue` for example, while others are opposed to this, and there are stunts such as people locking themselves in glass boxes that are supposed to help autistic people. Overall, despite the idea of raising awareness of autism, it can be a conflicting and difficult month for anyone in the autism community, especially autistic people.  A lot of the tweets that I saw hash tagged with Autistic Pride day stated very clearly that this was not a day to raise awareness for autism.  It was not a day to raise money, or to push some cause, and it was also not a day for charities or carers or family members.  It was a day for autistic people simply to acknowledge each other, and take some level of pride in being themselves.

A lot of the tweets I saw made this pretty clear.  And there did seem to be a sense, especially with some of the younger autistic people who were tweeting, that it was a relief just to have a day where autistic people could actually take centre stage in the autistic community.  Now as I say, I don`t know a huge amount about Autistic Pride day, and what I have written above is just what I understood from the tweets that I saw.  But for me I like the notion of having a day that isn’t about awareness, that isn’t about how autism can impact on other people, and that isn’t even about a singular aspect of being autistic.  But is rather just a chance for autistic people to feel in some way part of a community of people similar to themselves.

So why would there be Autistic Pride?  Well this is just my personal view, and it will be completely different for other people.  I am not proud of the fact that I am autistic, but I am not ashamed of it either.  It is not something I had any control over so it is not an achievement on my part.  But for me, I feel that there is certainly an idea among neuro-typical people that if you are autistic, and you achieve something you have done that despite your autism, or by overcoming your autism along the way; as if I can be proud of who I am, and what I have achieved, but not that particular aspect of myself.  But I don`t see my autism as separate from who I am.  If I achieve something, for example I publish a book, then I am proud of that.  I am not proud of myself for `over-coming my autism` and publishing a book.  For me, and again this is just a personal opinion, the  notion of autistic pride is about saying that I can be proud of myself for doing things, or be proud of who I am as a whole, without discounting a huge aspect of myself, and what makes Me, Me.  If I am proud of who I am, and autism is integral to who I am, then in a way then yes, I suppose I am proud to be autistic.  And I think the notion of Autistic Pride could go some way to dispelling the myth that autism is a negative, destructive force, or a shameful part of us.

So is this something that would interest me in the future?  I don`t know if Autistic Pride day is an official event, or if it was just a hashtag started on Twitter so I have no idea if there will be another or not.  But yes it is something that I would have an interest in.  It is important to make sure that something like this doesn’t become corrupted, and end up being used by the wrong people for the wrong means – in the vein of Autism Awareness month and campaigns such as `Light it up Blue`  https://askpergers.wordpress.com/2016/04/02/light-it-up-blue-but-for-who/  The idea should always mean being guided by what autistic people want, and not by what non- autistic people feel is best, or appropriate.

For me it was nice to be able to go on to Twitter, and see people just saying that they are proud of who they are, and including autism in that.  This of course is something that you can do all year round, and you should do, but it would be nice to continue to have at least one day that is just about autistic people, and not the wider autism community.

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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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