I recently wrote about how I’d gotten a new job – a two-year contract with one of my old universities – as a participant researcher on a project designed to highlight professional and social neglect regarding autistic adults.

Well that was all well and good. But now that the initial sheen has worn off, well here comes the hard work. And the thing is, I’m in a fairly unique position here, because I am the subject – although not directly – of the research as well as being the one tasked with helping carry it out.

This puts added pressure on me to shine and to come across as professionally competent; I am representing one of the most invisible groups in society, after all.

Therefore, imagine my relative horror – in relation to this responsibility – when I was confronted with an email last week inviting me to partake in something called ‘Dropbox’; ‘Dropbox…’ I muttered, leaning in a little closer to the screen, ‘…it sounds like cat litter!’ But of course it wasn’t cat litter.

It was in fact some means – the tech is quite beyond me – by which files and schedules can be shared between a group of research participants. ‘Okay,’ I said to myself, ‘I have no idea how this works…’ and so then I thought to myself, Well who can I ask for some help?

And then it hit me. There was no one I could ask because there is no one out there on hand to help autistic adults with these – or indeed any, really – sorts of difficulties. We are practically invisible.

Okay then, I thought, I’m going to have to do this for myself…or, alternatively, I could simply email the person who sent me the Dropbox link and ask her help, but I sort of figured that might compromise the professional facade I’d spent so long erecting. Okay, I then thought, perhaps Google can help me with this – and it did, up to a point.

But then I hit on a real brainwave – I’ll send an email enquiry for help and I’ll sign it ‘Distressed 16-year old with autism.’ And I did. And I was deluged. People couldn’t wait to offer help, and to say, ‘Oh you poor, quirky thing!’ and so on and so forth.

Now, as I sat there scrolling through the replies – none of them sexually creepy, I might add – I thought to myself, Don’t any of these people realise their autistic kids – their very own autistic kids, quite often – are going to grow up into invisible, marginalised autistic adults?! Or do they really think that autism is something that just evaporates when you stop being ‘cute and quirky’ and start being ‘grown-up and conspicuous’?!

At that moment I decided simply to delete all of the replies, all the offers of help, all of the saccharine sentiments, and I settled on the fact that I’d simply have to do it myself. As an autistic adult. After all, that’s what I’m being paid to perceive, you know, lack of provision for marginalised voices, and since it also happens that I’m one of those marginalised voices myself, I’ll just have to make myself heard by myself, and learn to do these things by myself, so that I can set a good example.

Getting a job when you are the job – I think they call that kismet. 

Happy vocalising!

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News Transparency – by Mickey Mayhew