Autism Awareness – this time it’s personal

So, it’s April, and even though we are over the hump of Autism Awareness Day, we still have Autism Awareness Month to get through. The funny thing is, it’s only this year that I’m really aware of it. Don’t get me wrong, I’ve been “aware” of autism for the greater part of my life. It’s just the “awareness” that has passed me by so far.

First of all, I never thought that “awareness” was anything particularly useful. Yes, I’m aware that this thing exists – so what?

Secondly, every month is something-or-other awareness month. I guess for me autism awareness didn’t particularly stand out as something I needed to think about. It was just one of the dozens of awarenesses clamouring for my attention.

Autism Awareness, to my knowledge, is not such a big deal in this country anyway as it is in the US, or at least this is the impression I get. This is due to the activities of You-know-who, which we don’t have in this country, nor do we have an exact equivalent. (Again, to the best of my knowledge. I might be wrong.) (Actually, having read a few more blog posts, it seems I was wrong. It seems the whole mania for lighting up blue has crossed the ocean and spread to the UK. I haven’t seen any of it myself yet, though.)

I’ve been “aware” (hor hor) of A$ for some time, and not necessarily in a good way, but I had no idea of their firm association with the colour blue. Nor did I know about the Light It Up Blue thing until I read about it on a blog a couple of months ago. If I’d seen a building lit up in blue, I would have thought “oh, how pretty!” and nothing more. Likewise the significance of the puzzle piece escaped me. Plenty of companies and organisations use puzzle pieces in one form or another as their logo, and I didn’t really make the connection. It was just an insignificant thing, briefly glimpsed and then forgotten.

This year, however, is different. Not only do I hear much more about Autism Awareness and Autism Acceptance, because my ear is suddenly tuned to all those autistic voices out there, chiefly on the web, and I listen to what they have to say and actively seek out those voices. This year it’s also personal for me. Since realising that I might be on the spectrum myself, the discussion has become about me. Everything that’s said about autism, about autistics, is potentially said about me. My awareness has taken on a whole new flavour. I no longer watch the awareness circus from afar, but it has come much closer. I now have a stake in the fight against misconceptions and for acceptance. At the moment I am only hovering on the fringes of the autistic community, but I stand in solidarity with all those who call for a change in the predominant attitudes, the prevalent thinking about autism and the way autistic voices are ignored in favour of those supposedly speaking for them.

Awareness of autism as such is not necessarily a bad thing. There are two problems though I want to highlight with Autism Awareness as it happens now. First of all, what sort of autism are people being made aware of? It seems that mostly it’s the kind of autism that steals your child and imprisons it in a shell, trapping the “real” child inside. It’s the enemy we have to fight. Yes, it’s a war on autism out there. I don’t need to tell you how skewed that view of autism is. What about the autism that people mostly still aren’t aware of? The kind that is actually all around you, on the street, at work, at your sports club. Yes, autistic people can be found in all those places, and they are not always easy to spot, because the image of autism which people have in their heads is actually a harmful stereotype (see above). So it’s not that we don’t need awareness, on the contrary, there is quite a bit of awareness work yet to be done. That’s only the first step, though.

I don’t need to spend many lines here on saying how “Awareness” isn’t good enough and doesn’t get us anywhere, how the whole awareness industry is to be viewed with scepticism, and how wholehearted acceptance is what’s really needed. It’s been done elsewhere already, and probably better worded than I ever could. If the internet works the way I think it does, the hashtag #AutismAcceptance will show you the way.

The second problem is with the entities who aim to raise this awareness. I have just used the term “awareness industry” – with good reason, because it involves money. “Autism Awareness Day” or “Month” or whatever is driven by charities who are trying to raise funds as well as awareness, first and foremost of course They-who-must-not-be-named. The problem is that these charities are all about doing things “for” autistic people, often without asking what autistics want or need. No, they know best. They go about, doing good on behalf of those poor suffering people who can’t fend for themselves and get to bask in the glow of their benevolence.

There is a perfect word in German for that: “bevormunden”. “Bevor” = before, in front of. “Mund” = mouth. When you “bevormund” someone, you are literally putting your mouth in front of theirs, speaking for them and at the same time preventing them from speaking themselves. That’s what’s wrong with these charities. Not only do they go about and spread misinformation and stereotypes, but because it’s they who are in the public eye, they block the mouths of #ActuallyAutistic people and prevent them from getting heard.

There is one last, very personal, thing I need to say. You-know-who have stolen my favourite colour, and I am very annoyed about that. People are calling to eschew the blue this month, for very good reasons, and I’m with them, but it pains me. Blue has been my favourite colour since I was a child, and the outpouring of anti-blue sentiment is a double-edged sword for me.

How did they get the colour blue so firmly associated with them anyway? Their choice of colour, as far as I know, is based on a stereotypical double-whammy: it’s apparently because boys are autistic far more often than girls (wrong), and it’s blue for boys (yeah, why, exactly? This whole “pink for girls, blue for boys” thing is a whole other swamp of wrongness).

Yes, we should #boycottAS. Yes, we should celebrate #AutismAcceptance, or even, as I’ve seen, #AutismAppreciation. I’m all for wearing #RedInstead.

But please, don’t hate the blue. I know, YMMV, but I love blue. Blue is nice. Blue for me does not mean You-know-who. Blue is a calming, soothing, cooling blanket. Blue is rest and relaxation for my eyes. Blue is the wide sky, opening up above me, limitless. Blue is the North Sea on a cloudless day, rolling in waves onto the beach at my favourite place on earth. Blue is the sapphire on my grandmother’s ring, which, she told me, has a star awakening in its depths if the light falls onto it in the right way.

Hear this, A$: You don’t get to take my favourite colour way from me. Maybe we need a new hashtag. It’s time to #TakeBackTheBlue!

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14 thoughts on “Autism Awareness – this time it’s personal

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  1. Yes!! 👏🏼👏🏼👏🏼. This whole post. All of it. Très awesome! 👍🏼💓💓

    This year, it’s personal for me too, and for the same reasons.

    I would venture to say that whether or not you end up going for a formal diagnosis, if what autistic people say resonates with you, by all means, do self-identify if you wish! A magic piece of paper isn’t everything 😊. Make Autism Awareness personal. Loud and proud 💖. At least, that’s how I see it 😘🌺

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    1. Sorry for the late reply to your comment, I haven’t really sussed the WordPress mechanics yet…
      Getting a piece of paper is only the last step to consider – first I need the resolve to diagnose myself, and I’m not there yet! Even so. it already feels more personal than it ever did. My perspective has shifted somewhat in the last few months…

      Liked by 1 person

      1. Exactly 😊👏🏼. It took me a few weeks to self-DX and several more months to go for the formal DX. For others it takes much longer, and that’s more than OK 💖. One of my favorite sayings is, “there are no extra points for speed. The only ‘right’ speed is that at which you are comfortable.” 💞🌷

        Liked by 1 person

      2. Some people never go for formal DX, and there are plenty of good reasons for that. So if you decide not to do that, that’s perfectly legit in my book, too, and a lot of people would support your decision and accept you as you are (my philosophy is to ignore anyone who would say otherwise; it’s not their business and they don’t know you like you know yourself) 😊🌺💓

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  2. Wonderful post, thank you!

    Both the blue AND the April thing bother me. My second favorite color and my favorite month. Ugh. Also, blue didn’t become a “boy color” (in the US, at least) until around the 1940s or 50s. Prior to that, blue was a “girl color” and red was a “boy color.”

    Not that I’m thrilled with gendering colors in the first place, but the history of it all does matter to me! And I love blue too ❤

    I didn't think this month would be as difficult for me as it has been, but I found the same thing you did, that this time it's personal. I'm not used to things like this being personal and I was completely blindsided. Getting through, but I was surprised at how upsetting it's really been.

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    1. Yes, I have heard the story of blue and red/pink and how they got assigned to genders. Personally, I was a kid in the 1970s, when the blue/pink division wasn’t quite so pronounced as it seems to be today, so I could be as blue as I wanted!
      Round here (a small town in the UK), there isn’t really much going on in terms of autism awareness campaigns, so it’s not as difficult to get through the month as it is for others elsewhere.

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