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Autism – Explanation not Tragedy

When I found out my daughter had autism nothing changed. I guess I was lucky that I googled her lack of progress and was proactive in seeking some kind of diagnosis or help. I left the Child Development Centre with a small signposting pack of information but when I closed my front door nothing was different. My daughter was exactly the same to me, she just had a label.

When the Hughes family discover their youngest son has autism, everything changes. . Tonight. 9pm. BBC One.

This new TV show, The A Word, makes me feel nervous, my daughter is never usually represented in these sorts of shows as the spectrum is so wide they usually pick the “gifted” few. While she is really intelligent she is not verbal enough to be deemed savant and let’s face it this is what TV likes. I think this show will be fine despite my reservations, I know it’s going to have massive backing from big autism charities so hopefully they’ll get most of right.

Autism isn’t just about diagnosis, I know this is the part which can easily get sensationalized watching the parent “fall apart and deal with it.” I might add that I did neither, I also didn’t “grieve for the child I thought I’d have.” I know it sounds harsh but I want to slap these people and say look at your child, just look at them! Does this word..the A word…change them? No, it explains them.

Autism is not a tragedy.

Don’t get me wrong it can be ugly, it has some very dark moments which can test you, push you further than you thought possible but there are also moments of sheer joy and beauty. Your child is still exactly the same person as before and deserves to be treated that way not as anything less or damaged, you are the one who changes because as well as being a parent you become their advocate and you need to get your sleeves rolled up ready for the fights you’ll invariably face with health and education…but keep being their parent first.

I will watch the A-word and hopefully it’ll spread a bit more awareness which is something I will always celebrate, I hope you do too.

Different not less – Temple Grandin

Post watch review- I thought it was ok, maybe a bit weird how sexualised it was considering the story centres around a 5 year old I know they were trying to make the point that life goes on but…whatever. I thought the party scene was done really well and it was like my daughter was there, however, did they really not know that their child at 5 would not enjoy that kind of party?? Ok I’ll let it go. Did they really have to give him a gift? This is rare in the autistic community, really rare and perpetuates the Rain Man myth that I think is just about fading away. Anyway…I liked that they gave him eye contact as this is something that many don’t have but many do, I “liked” the slap, I had one his week as I blogged about before so I really recognised it. 

I will watch again next week, I didn’t hate it and I’m interested to see where it goes…I imagine towards the parental acceptance (one would hope!)

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32 thoughts on “Autism – Explanation not Tragedy

  1. Different not less – indeed! This is a great post and you are a great parent. I wish some of the parents I used to work with could see things like this. So many think autism has ‘stolen’ their child, when if they could accept it as fully a part of the person their child is they could be much happier. #bestandworst

    1. Thank you, I really feel for the parents whose children regress and lose language etc, that must be really sad but that’s quite rare. My two are both unique and I wouldn’t have them any other way 🙂

    1. Thank you, I always say that it’s our normal. I never grieved or struggled to come to terms with my children’s diagnosis. I will however keep trying to make the wider public understand and accept them x

  2. This was a really interesting read. I love the way you said nothing changed with your daughter’s diagnosis, that makes so much sense actually! I’d like to hear more of your thoughts as The A Word continues.

  3. I have two kids on the spectrum and I did grieve when I first received their diagnosis but this was necessary, for me, to be able to move on – it wasn’t a reflection that they had changed in any way. They are the light of my life and my only wish is for them to be happy – something I’m actively trying to work towards. I’m in Australia so I’ll have to try to stream The A Word online – otherwise it will probably take ages to get on the TV here!

    1. I’m sure everyone is different and it’d be boring if we weren’t it’s just something that I really don’t understand no matter how hard I try, Not saying there is anything wrong in your reaction I’m sure some find my blase reaction equally strange!

  4. I watched it and having never had any experience of this it’s really interesting to hear your view on it. I found it a bit strange that it seems to just be occurring to the parents now that their son may be on the spectrum, aged 5? Is that realistic or are the parents just supposed to be in denial? I’ll probably keep watching next week to see how the storyline continues #picknmix

  5. True, suppose the writers are trying to show that the parents want the son to have the same experiences as the next child. Found the ‘he’s the only child not invited’ storyline a bit much too, would people really exclude one child from a class party??

    1. I actually know this has happened but in all honesty that boy is just a bit quirky and not harming anyone. There are a lot of kids on the spectrum who hit out and cause problems at school because they can’t cope. I think these kids would be more likely to be cut out. In this instance especially in such a tiny village it seems quite absurd!

      1. Really? Like I said I have no experience of it but even if my child specifically asked me not to invite just the one child I’d have to explain to them that you can’t do that! From a child’s point of view I get it, but for an adult to allow it seems just mean! Thanks for replying, interesting to learn more, hopefully the programme will do more good than harm.

  6. I have this on record to watch and am intrigued to see how it was portrayed. My daughter is currently on the waiting list for assessment and so I am particularly interested for that reason. #brilliantblogpost

  7. I’m unlikely to get to watch this series where I am, but I gues it can only be a good thing that autism is being talked about more and more in the media so people are becoming more informed. Everyone’s situation is different so people are not necessarily going to react in the same way. A friend of mine was quite glad to finally get a diagnosis, I think she felt it was useful and kind of an explanation. #WkendBlogShare

  8. I don’t think we have this show here but I’ll have to look it up! My daughter doesn’t fit the typical “autism” picture but that has its own challenges, too, as I think most people see her as a wildly misbehaved child. She definitely lives with autism! It’s such a challenging and beautiful journey. Today I’m a tired autism mom, feeling the challenging part more than the other. I love what you said about diagnosis not changing anything about our children! So true.

  9. It must be hard when things are mis represented. Your child will always be your child regardless of what labels someone else assigns to them no matter how qualified the person may be.
    We all have a name, a heart our fingerprints are all different just as every snowflake is different no one is any less beautiful or special than another.

    #picknmix

  10. I have this recorded but not watched it yet. I am interested to see how it is portrayed. I know a few children who are on the spectrum, each of whom demonstrate very different autism traits. x #WkendBlogShare

  11. Autism has been in the spotlight a lot lately! On the one hand it’s good that it’ getting a lot of press but on the other it’s no good if it’s been sensationalized! I’m sure every family has their own way of dealing with a diagnosis & beyond. Thanks so much for linking up with us! #bloggerclubuk x

  12. Can’t wait to see what you thought of this week’s episode… I’ve blogged it already! There’s so many parallels to after diagnosis for us, even though we have a girl, she was younger, she doesn’t have ‘a gift’ etc. But the stresses on relationships, the need to ‘do’ something, the parties, social issues etc are all something many can identify with I think…

    1. I’ll check it out in the morning! I find it really hard to like any programmes about asd as they all usually seem so far away from us. I think this is well researched so there are some definite areas I recognise but the relationships and emotions are miles away from us x

  13. I have it recorded to watch. For me I don’t really know much about autism so to hear your points of view on the programme is interesting. To hear your life didn’t change is great as others would say it changes their life but you kept your the same for your child. Thanks for linking up to #justanotherlinky xx

  14. Good post!
    When it comes to The A Word, I think we have to remember that it’s a drama not a documentary. It’s not going to resonate with everybody though I’m pleased that they have addressed the eye contact myth. I’m going to watch the whole thing before I give my verdict, for what it’s worth ha ha. #SpectrumSunday

  15. Very powerful post hun, I still can’t make up my mind about the A word, I don’t relate all that much so far, but I will continue to watch. I’m afraid I am one of those people that need a slap, I have struggled so much to come to terms with having autism in our lives, however I do know he is the same little boy, and I love him so much regardless. Thank you for linking up to #spectrumsunday. Hope you join me again this week. After a laptop malfunction (I spilt my wine) it will be live later today xx

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