You're an explorer! An explorer from way back, in the days when Europeans knew little of the wider world, and set sail for who-knows-what. You spend days, weeks, nothing to see but the endless sea, and then- ho! As I believe such explorers used to explain. Ho! Land ahoy! And all that.
Suddenly, your empty world is now full of this land, your thoughts now devoted to a place that, until a moment ago, you didn't know existed. A bit of the map gets coloured in.
The point of this rambling is that, for the first eighteen months after my diagnosis, I looked out and I saw the endless sea. What I didn't see were other autistic adults, only parents speaking for autistic children (or parents speaking for themselves, in many cases). I felt alone, out there in the broad and unbroken ocean.
Until, a few weeks back, I found my New World, the #ActuallyAutistic community on social media.
(I have no plans to conquer it and kill the indigenous inhabitants, though.)
This community is a very fine thing, full of wonderful people standing up for vital issues. Through them, I have learnt more about myself, and gained more confidence to talk about and understand myself.
But here's the rub: I found it by chance, and no doubt many other autistic adults are still lost at sea. Even, as now (there are various World Autism Awareness Day/Week/Month happening around this time, end of March, beginning of April), when autism has a widely visible public presence, debates and campaigns are dominated by the voices of allistics (non-autistic folk).
How, then, are we autistics to lead better lives, fulfil potential, not be held back or hidden, if neurotypical others take it upon themselves to shout over us? We are given these obstacles and these restrictions because the allistic society does not make room; because society has been built along narrow lines, and if your brain has different lines to follow, you're told you don't belong.
And unless you believe that the world humanity has built is in every way perfect and infallible, then you must accept that those who cannot adhere to its narrow lines are not at fault. And those who built and benefit from that narrow world, they should not shout over us, dictate to us, unilaterally decide that they are to speak for us.
As the old but always valid slogan goes, nothing about us without us.
So, around this time of year, autism awareness days/weeks/months/whatever, don't light it up blue: blue is associated with an organisation called Autism Speaks, which is everything I've just been moaning about (unilaterally deciding to speak for and over autistics, without any autistic contribution, and with an intention to get rid of us - read more here). There's a choice of colours to use instead, which might seem confusing in this strictly brand-controlled age, but hey, autistic people are a diverse group, we don't all fit into one slot. And I'm not aware of anyone objecting to the use of any of these colours (just as long as it's not blue).
Gold is a popular choice, derived from the chemical symbol for gold (Au). Read more here.
Red has also gained a lot of prominence, through the snappy #RedInstead hashtag. Read more here.
Or use both! Why not? Red and gold work well together. Very regal. Very luxurious.
What these colours say, however, is very important. Unlike some other colour-branded campaigning, it doesn't just say 'I'm aware' or 'I care'. It says something far more powerful. It says I listen, it says I respect.
For anyone interested, here are some splendid twitter accounts from within the autistic community:
@NeuroRebel
@AnnMemmott
@KieranRose7
@A_Silent_Child
@RyanHendry94
@AgonyAutie
@BrookeWinters33
Suddenly, your empty world is now full of this land, your thoughts now devoted to a place that, until a moment ago, you didn't know existed. A bit of the map gets coloured in.
The point of this rambling is that, for the first eighteen months after my diagnosis, I looked out and I saw the endless sea. What I didn't see were other autistic adults, only parents speaking for autistic children (or parents speaking for themselves, in many cases). I felt alone, out there in the broad and unbroken ocean.
Until, a few weeks back, I found my New World, the #ActuallyAutistic community on social media.
(I have no plans to conquer it and kill the indigenous inhabitants, though.)
This community is a very fine thing, full of wonderful people standing up for vital issues. Through them, I have learnt more about myself, and gained more confidence to talk about and understand myself.
But here's the rub: I found it by chance, and no doubt many other autistic adults are still lost at sea. Even, as now (there are various World Autism Awareness Day/Week/Month happening around this time, end of March, beginning of April), when autism has a widely visible public presence, debates and campaigns are dominated by the voices of allistics (non-autistic folk).
How, then, are we autistics to lead better lives, fulfil potential, not be held back or hidden, if neurotypical others take it upon themselves to shout over us? We are given these obstacles and these restrictions because the allistic society does not make room; because society has been built along narrow lines, and if your brain has different lines to follow, you're told you don't belong.
And unless you believe that the world humanity has built is in every way perfect and infallible, then you must accept that those who cannot adhere to its narrow lines are not at fault. And those who built and benefit from that narrow world, they should not shout over us, dictate to us, unilaterally decide that they are to speak for us.
As the old but always valid slogan goes, nothing about us without us.
So, around this time of year, autism awareness days/weeks/months/whatever, don't light it up blue: blue is associated with an organisation called Autism Speaks, which is everything I've just been moaning about (unilaterally deciding to speak for and over autistics, without any autistic contribution, and with an intention to get rid of us - read more here). There's a choice of colours to use instead, which might seem confusing in this strictly brand-controlled age, but hey, autistic people are a diverse group, we don't all fit into one slot. And I'm not aware of anyone objecting to the use of any of these colours (just as long as it's not blue).
Gold is a popular choice, derived from the chemical symbol for gold (Au). Read more here.
Red has also gained a lot of prominence, through the snappy #RedInstead hashtag. Read more here.
Or use both! Why not? Red and gold work well together. Very regal. Very luxurious.
What these colours say, however, is very important. Unlike some other colour-branded campaigning, it doesn't just say 'I'm aware' or 'I care'. It says something far more powerful. It says I listen, it says I respect.
For anyone interested, here are some splendid twitter accounts from within the autistic community:
@NeuroRebel
@AnnMemmott
@KieranRose7
@A_Silent_Child
@RyanHendry94
@AgonyAutie
@BrookeWinters33
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