Time To Step Up

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…

Autism-Negative or Autism-Positive - Which Are You?

For some time now, I’ve noticed an increasing polarisation of stances amongst those who have anything to do with autism. I’ve started to call these stances ‘Autism-Negative’ and ‘Autism-Positive’. There isn’t really a ‘Autism-Neutral’ stance, as the default still tends to be the negative one, alas, given the prevailing public understanding of autism. Those who disagree with it are almost required to be positive in order to counteract that.

It’s usually pretty easy to grasp which people are which of course, but to make it crystal-clear, I’ve listed the prime characteristics of each stance.

If you’re Autism-Negative, it’s likely you will –

1) View autism predominantly via the ‘medical model’ of disability, which sees the autistic person as ‘unwell’, ‘abnormal’, or simply ‘bad’.

2) Talk of autism as a ‘disease’, ‘epidemic’, ‘brain damage’ or a ‘thief’ of the ‘real’ child, and/or describe autistics as ‘afflicted’ or ‘suffering from’ autism/Asperger's.

3) Insist on person-first language when describing autistics, ie ‘person with autism’, implying the autism is somehow separate (and hence can be detached and gotten rid of).

4) Conduct or uncritically support ‘research’ that frames autistics as ‘abnormal’ whenever they differ from neurotypicals.

5) Misinterpret autistic behaviours, eg lack of eye contact, because you never consult the actual autistics, even those adults who are able to speak.

6) Devote much time, energy and money to either searching for a cure, or supporting and/or working for organisations that have this objective in mind.

7) Insist that all autistic children should be subjected to long hours of ‘therapy’, designed to ‘cure’ them or at least render them ‘indistinguishable from their peers’.

8) View this goal of ‘indistinguishability’ as the ONLY worthwhile goal for autistics. Suppress stimming and any other obvious autistic behaviour, and punish meltdowns.

9) Tell autistics or their parents that if only they/their child was ‘normal’, they wouldn’t be bullied. And hence give the bullies a free pass.

10) Be hostile to autism advocates, telling them they are ‘too high-functioning’ to understand the ‘real’ autistics, who ‘need these treatments’.

11) Complain about how ‘stressed’ you are, how autism has ‘ruined’ your life, and similar pity parties, if you’re the parent of an autistic child, or write about autism like this, if you’re a journalist.

12) In the most extreme cases, support ‘cures’ such as MMS and similar, even when they’ve been judged illegal and abusive.

On the other hand, if you’re Autism-Positive, it’s likely you will –

1) View autism via the ‘social model’ of disability, which sees autism as simply a different neurology, and society and its attitudes as the problem.

2) Talk of autism using positive words, eg ‘neurodivergent’, ‘neurodiverse’, etc.

3) Use identity-first language when describing autistics/yourself, ie ‘autistic person’, because you view the autism as intrinsic to the individual, affecting their/your perception of the world, self-expression, thinking and emotional processes, etc.

4) Severely critique all research that frames autism negatively, and possibly conduct your own to find out the truth, even if it’s just an informal poll on social media.

5) Investigate the true motivations behind autistic behaviours by asking autistics. Or at least not assume the reason is a negative one.

6) Insist that autism doesn’t need curing, but rather acceptance and understanding.

7) Allow autistic children to BE children and to be autistic, to play and to develop in their own way, using non-invasive therapies only when absolutely necessary.

8) Acknowledge the problems, but also talk of the strengths and advantages of being autistic. Celebrate and be proud of being autistic. Stim happily and frequently, and/or allow your child to do so.

9) Promote inclusiveness of autistics in the classroom, workplace, etc, and protest the bullies, even punishing them if you have the power.

10) Either support the autism advocates, or be one yourself, and letting people know that ‘functioning levels’ are not a useful way of measuring autistic capabilities.

11) Either never experience high stress because of your autistic child, or have learnt ways to understand and deal with disagreeable behaviours, often by getting support from other autism-positive parents. And probably never appear in the media, because you’re not ‘newsworthy’. Or get reported as ‘different’ or ‘unusual’ if you do.

12) Be horrified by, and adamantly against, all harsh, abusive ‘cures’, even perhaps campaigning against them, signing online petitions, emailing your MP or representative, etc.

There are probably other items that could go on the list, but you get the picture. Note that you don’t have to tick every item to fit in one category or another, eg some Autism-Positive autistics would perhaps still prefer to say they ‘have autism’, rather than that they ‘are autistic’. It’s often a matter of personal choice.

Plus, there are bigger issues than what terminology you use. The attitudes and practises of the Autism-Negative crowd predominate, and they are hurting us badly. Very badly. I don’t think there is an autistic on the planet (unless they are very young and protected, or live on some remote island without access to the outside world!) who hasn’t met an Autism-Negative person, or experienced some of the ‘treatment’ they dish out. It has to stop. It’s time to change the public perception of autism, from Autism-Negative to Autism-Positive.

So which one are YOU?