The A Word: don’t talk to me about it

If I had to critique The A Word at this early stage then all I could say is that I commend it for the robustness and complexity of all the characters and their stories, for the humour (genuinely LOL funny) and of course, the excellent music.  I’m looking forward to next week.

What it is going to do for autism awareness/understanding/acceptance/equality, I don’t really know…

I was privileged to get to see the first episode previewed last week at the BFI and so, already familiar with the script, I was able to simultaneously ‘enjoy’ watching reactions online and from my 8 year old autistic daughter with whom I watched it again.

It was a stark contrast.

Twitter and Netmums were full of parents talking about “how it brought it all back” for them.  I do get that, I felt it too.  Another group of parents seemed completely caught up in critiquing the tiniest details, seemingly lamenting how The A Word didn’t represent “their story”.  The mainstream media coverage yesterday morning said it all, pages of quotes from autism Mommas, laughing and crying all over again, totally owning it.

As us parents rave about The A Word, reliving our early experiences over again; or bash it too much, getting lost in arbitrary details like how autistic the autistic kid is, whether he should have been a girl, or played by an autistic actor, how clueless or clued up the parents are, whether their diagnosis process was quick or not, we are missing the point.

As the writer, Peter Bowker, himself states:

“You won’t understand autism by watching The A Word although you might understand some small aspects – I’d really like people who are properly interested to go off and look into it deeper.”

…and when people do decide they want to go deeper, I sincerely hope they speak directly to autistic people, not their parents.

To be very honest, throughout much of the programme, I was feeling quite devastated as I saw it through my daughter’s eyes – her disbelief at how they skirted around the reality, the fear and reluctance to embrace autism, the sadness and blame – she looked at me shocked and heartbroken, how on earth could I ever justify that?  I didn’t know what to say other than:

“that’s why I blog, that’s why I try and do things to campaign for autism awareness – it’s not their fault – if they understood autism, they would not be so sad or worried, would they?  That’s why I choose to share our stories, that’s why I would like you to choose that too, to help people understand autism so it gets better in the future…”

…and the contradictions in that really hit me.  Hard.  And doubly so, as I knew through my first viewing I too was caught up reliving my own emotions.  Not a thought for hers…

I agree with those who say that there’s a chance that autism is the new baking and I understand why some say we should be worried about that, yet I sort of also hope that it is.

Maybe if autism is the new baking and the various media organisations and content makers/commissioners are driven to seeking out the new, different, bigger, better, funnier, naughtier, sexier manifestations of autism then perhaps, probably, they’ll tire of the parent perspective once and for all.

THE-AUTISTIC-GARDENER-009.jpg
Looking forward to more of this funnier, naughtier, sexier manifestation of autism 😉

I am not criticising The A Word for taking that perspective, nor should anyone, it is a piece of drama, it is not a neurodiversity equality campaign broadcast.

I get it now.  Parents are the ones who are perpetuating the “bad” stuff about autism, the huge emotional weight of autism, even if they don’t mean to, even if they are just trying to make things better:  I’m increasingly aware of how overnight, I went from mother to dedicated autism scholar and, frankly for a lot of people, bore.

I hope for a world where parents don’t sit in shocked disbelief when they are told by a medical professional that their child is autistic, that they wouldn’t say things like “I didn’t want to pin a label on him that big”, but until all of us other parents shut up, they will.

I have read SO many blogs by autistic people telling parents to move over and shut up.  I have thought about it really deeply several times and worked out how to justify my own blogging ‘urges’ and double-triple-checked myself for appropriateness in how I “represent” autism as a parent.

But after watching The A Word with my daughter, I actually feel like, yes, I should just shut the F up.

I increasingly understand and believe that parents hold the key to the world accepting autistic people without prejudice (or fear, guilt, grief)… but not by telling their own stories, but by NOT telling their own stories.  By stepping back and letting their autistic children speak for themselves (as far and as soon and as often as they are able) and by gently encouraging and insisting that people listen to their children directly, not to them.

My daughter sees, feels and articulates things totally differently to me, with a gentle candour and wisdom way beyond her years, anything she has to say will have the inherent honest appeal of any first-person account and deserves an audience.  Frankly, she rocks, she doesn’t need me to represent her, maybe just give her a leg up onto her own stage.

That’s going to be hard sometimes.  My daughter’s life story and mine are so entwined and almost one and the same in places… it’s easy to mistakenly think that I can tell that story as she would.

And it’s my story too, it’s hard to give up what feels like a significant portion of my life story to be told in someone else’s words, her words… but then I remember that this is only what I am guilty of doing… of taking her story from her.

So please meet the gorgeous Beatrix, “the daughter” has a name and a voice of her own, she’s going to feature on here, in her own words, a bit more from now on…

12 thoughts on “The A Word: don’t talk to me about it

    1. Great to hear and she’s very chuffed too! I doubt I will shurrup on the things that matter to me, I just choose not to speak louder about autism than Bea 🙂 And I’ve felt a little uncomfortable with how weighty this blog has got in places without enough frivolousness and superficiality in between. It will end up being a better reflection of us both, I believe (and hopefully a good read)! XX

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  1. Thank you, you’ve really made me think about how it’s not my story but my son’s. I look forward to hearing from Beatrix in your future posts 😬

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    1. Thank you too… it’s incredibly difficult to draw the line sometimes but we have to. I’ve just spent ages looking for a piece I wanted to share with you about a husband blogging about his wife’s mental health, shares a photo, destroys her life (unintentionally)… as analogy of writing about someone without permission… but I have gone blank who wrote it – it’s really pithy and hard to read but for good reason – argh, if anyone else reads this and knows the piece I mean, please share!!!

      Thanks again xxx

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  2. I am loving this post! Also, nice to “meet” the adorable Beatrix at last!

    I haven’t watched The A Word yet, but I intend to because it holds two of my pet interests – autism and Christopher Eccleston. I’ve watched him being interviewed about the series by an autistic reporter though, and my impression was that he wants to bring the general ignorance about autism out into the open. I trust him to be able to do that without coming across as condescending; just a typical granddad who doesn’t understand (yet) and also doesn’t want to believe that autism could possibly “happen” to his family. It’s a natural reaction for someone who has no prior experience or knowledge of autism, after all (I know you know this; we’ve all been there).

    My son doesn’t have a voice as such, as his autism is profound and comes with a whole set of undiagnosable learning difficulties, but I do, and therefore I love telling the world how I embrace my autism for making me thoroughly unique. I love to tell people that nobody “has” autism because it’s not a neurological disorder, and that we are who we are because we were born with these wonderful, quirky brains. Of course, walking around wearing a Tom Baker scarf and a Jayne Cobb hat isn’t “normal” for someone in their 40s, but I don’t care, because it makes me happy within my own little autistic bubble of joy 🙂

    PS: I love the autistic gardener and his team too! Any idea if there’s going to be another series?

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    1. 😀 ha ha ha she is *mostly* adorable… if attended to appropriately xD

      Mr Eccleston’s character should please you (I admit, I struggled at first with him being the grandfather – are we all that old?!?!) and he’s very funny.

      I’m no longer sure what is normal for someone in their 40s, I think your outfit sounds rather smashing! I used to work for a trend forecasting company, some of those who decide how we should all dress would sartorially out-quirk anyone. Like everyone got pissed at a jumble sale and someone offered £50 for the person who could dress most like a combination of someone high on acid, a toddler and a granny who sadly finally just lost her marbles… and they were all winners.

      I also love the autistic gardener a lot (although in an non-stalker appropriate way, ahem, he is happily married) – if you ever use Twitter, follow him, hilarious… and apparently VERY exciting things in the pipeline for him TV-wise but they are still top secret but OMG will be B-R-I-L-L!!

      XXX

      By the way, I am still laughing from your latest blog post and trying to pluck up the courage to buy some of that tea… I don’t know why but the fact that the Dragons in your bathroom have a capital ‘D’ makes me really laugh!

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      1. Hahaha, they were serious Dragons, let me tell you! That tea is fabulous actually, and astonishingly good for your health. I discovered Chinese tea at a Discworld convention of all places, and as soon as I got home from that I ordered my Chinese tea set and a few teas from various places – with Chinalife winning outright in the quality/flavour stakes. I always drink it gongfu because it doesn’t seem to taste right if I drink it Western style, and doesn’t pack anywhere near the punch it’s supposed to deliver. Along with their Alishan Cream, I favour their Black Rose, White Gold, Young Gushu and Vintage Leaf Pu Erh. All marvellous stuff.

        My clothing style certainly gets me noticed around here. Mostly Doctor Who t-shirts worn with leggings, knee high boots and a short, flared skirt. Also a hat, because I am completely lost without a hat!

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          1. There used to be a hat stall in our local market. One afternoon my husband was buying veg when he noticed I’d disappeared, and he knew exactly where to find me. He possibly wasn’t expecting me to have bought a fez (that’s the Doctor Who influence again!) but he just smiled and asked me “How many heads do you have?” lol.

            I have to stay away from Etsy; there’s far too much in the way of Want there 🙂

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  3. I can’t wait to meet Beatrix :). As for the A word, i don’t know what i thought of it. Perhaps that was because i watched it in the middle of a horrible Lurgy i have at the minute, but i think i am looking forward to the next episode.

    Take care,

    Torie

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    1. I almost think a lot of people were perhaps expecting too much maybe… it was only the first episode, so there’s a lot of rapid scene setting to be done. I think it will really get going next week.

      Bea is getting a little giddy with so many people saying they are looking forward to hearing from her – oh dear, I can see a rapid ego expansion – what have I done!! 🙂

      I’ve just popped over to your blog – gosh – I could NEVER do that abseil… seems like you get up to all sorts of stuff – I’ve followed you!

      J xxxx

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