A change has been happening for me lately. And that change is that I’ve realised I want to more actively fight for autistic rights, change the public perception and treatment of autistics, etc. To be more active as an advocate, in other words.
So why now, some might ask, and not years ago?
I think the answer to that is many-sided. When I first began to realise that I might be autistic, nearly ten years ago, I had only a negative picture of autism. It wasn’t till I found other autistics that I began to see the real people beyond the stereotypes, and to understand just how much being autistic has shaped me. Nonetheless, it’s taken a lot of time and effort to dismantle the negativity piece by piece, to see it for the pure BS it all too often is, and to actually feel pride in being autistic.
And, like so many autistics, I was damaged, carrying a truck-load of emotional crap from my years of struggling to survive in a world that, to put it mildly, is uncongenial to those on the spectrum. I was scared, angry, drained, cynical, baffled and repelled by the world, and in retreat from it. Most of all, I was hugely ashamed of my ‘difference’. I could not see it, or myself, in any positive light. In fact I’d become so used to concealing my true self, that it took years before I could even talk about it with my family, let alone ‘go public’ as an autistic.
Then there’s my own personal history. I was active in the feminist and anti-racism movements in my mid-to-late 20s, and then basically burnt out, and dropped out. I’d had enough. Once you’ve been to one demonstration or protest march, chanted the slogans and waved the banners and placards, you’ve basically been to them all. I also felt I didn’t have either the skills or the personality that it took to be a leader, and I was bored with being a ‘foot soldier’.
I was physically tired too. I’d been trying to do too much for too long – university study, political activism, struggling to survive on a benefit, being a solo parent, attempting to have some kind of social life and/or relationships, and all the time dealing with my ‘difference’. I was pushing the boat out further and further, trying to please, trying to be what I thought I ‘should’ be, trying to force myself into normality. It didn’t work, and I collapsed. I didn’t know what it was, but I knew I wasn’t well.
I still didn’t take the care of myself I needed to though, and a few years later I collapsed again, fleeing to the country to try to heal. Eventually, after ten years of illness and a third and even more drastic collapse, I was finally diagnosed with Chronic Fatigue Syndrome, but by then I was almost bedridden. My nights were filled with pain, my days with exhaustion. I was unable to do pretty much anything, I couldn’t even read. It took years to come back from that, a long, arduous and often boring recovery. And I still live in fear of stressing myself out to the point of another collapse, which I might not come back from again. I have become ruthless about looking after myself – because I must.
Hence I came into the autistic community with a whole heap of issues, and it’s taken me a lot of time to work through them. Even when I became aware that others were fighting for us, I felt that I was too tired, too old, too cynical and withdrawn from the world to contribute much. Or perhaps even that my writing was sufficient contribution to the ‘cause’.
But this past year or two, despite all of my issues, or maybe even because of them, I’ve come to see that none of these things are important anymore. And that the only way I can truly exist in this world, or co-exist with it, is as a thoroughly authentic autistic – proudly and openly so. Making the world adjust to me, in other words.
So I’ve realised it’s now time. It’s not enough for me anymore, to sit back and let the brave few go out there and fight for my rights. Moreover, I think it’s time not only for me, but for lots of us to get involved. Because being out there, often as isolated voices, is taking a heavy toll on those few. They’re getting abused, slandered, threatened, psychologically battered and bruised, some are even getting burnt out from their efforts. They need our help and support.
I know that many of us have been focused up till now on building community, which is of course hugely important too. But that task is pretty much done, at least online, and if we want our community to ever be more than simply a refuge from an unsympathetic world, then it’s time to use it as a ‘launch pad’.
I also suspect that while most of us are probably supportive of the advocacy others are doing, many perhaps think that joining them is too hard, or that they have too many struggles already. I know just how hard life can be as an autistic, and that we all have multiple issues to deal with. But if our lives are ever going to getting any easier, if we’re ever going to create a world that’s bearable not just for us but for the next generations of autistics, we need to make it so.
As I’ve said above, I also have my struggles, and I’m no spring chicken anymore. I have maybe 20-25 effective years of life left in me, provided my health lasts out, which is not of course a given. I know how long it can take, to effect real change, and I want to make those years count.
Some might say ‘But I don’t know what to do’. The best answer to that is – ask someone who’s already doing it, and who you admire, what you can do. Once you get involved, what needs doing tends to present itself. And we can do it - together.
I say to all of us – it’s time. Time to get involved. The advocates already out there need our assistance, or in some cases even to ‘pass on the torch’. Let’s get out there and change the world.
See you on the front lines…