Friday, 25 November 2016

The Autistic Collective - Please Join Our Mailing List!


I wrote a little while ago on how I’m going to ‘step up’ and be more of an active autistic advocate. As part of this, several others and I formed a group we have named The Autistic Collective. We did this in order to pool our talents, skills and ideas, maximise our individual efforts, and facilitate the co-ordination of whichever campaigns we are involved in.

Now, this level of autism advocacy is not for everyone. Yet many would like to do something, no matter how small. So we have started a mailing list, which anyone anywhere in the world can join. The idea is that whenever we have a campaign going where numbers count, we will send people on the list an email detailing what we’d like them to do, typically just an email or letter to whoever, this could be a politician, a government department or agency, the press, or anyone else we are targeting. It’s then up to you to decide whether you want to participate or not. We can do draft letters for you if you’re struggling with what to say, or you can write your own.

And when I said anyone anywhere in the world can join, I meant exactly that. You can join as an autistic member or an associate member (ie a non-autistic ally), either of which can be in New Zealand or outside it – sometimes pressure from overseas can achieve things where solely internal campaigns don’t. I know from past efforts in this direction, that governments, for instance, do take note of communications from overseas.

There is strength in numbers, and this is something anyone can do, that may help swing the balance, where a small group could be ignored. So we are urging anyone who agrees with the aims of the Collective, to join our mailing list!

The aims of the Collective, and more information about it, plus the form to fill in to join our list, can be found on the Collective’s website, at www.autisticcollectivenz.org

We also have a Facebook page for the group, at https://www.facebook.com/Autistic-Collective-NZ

Hope you can join us!

My Blog Now Has Its Own Facebook Page!


For those of you who don’t follow me on Facebook, just letting you know that my blog now has its own Facebook page! I will post links to my latest blog posts on there, plus occasionally a link to the blogs of others that I especially like, and anything else which I find interesting, and hope that you will too!


Enjoy!

Saturday, 19 November 2016

#autismpositive


It occurred to me that, with NT allies of autistic people getting together more and more, and with many parents starting to adopt the autism-positive approach to their autistic children, that it would be a good idea if there was a simple way for such people to find each other online. We autistics could also do with a simple way of identifying those who are our allies – and, sometimes, of finding each other, when we are new to the autistic community, especially online.

So I got the idea of the hashtag #autismpositive. It’s a simple thing that people can add to their blog or forum description or subject line, their Facebook group description or a pinned post in the group (probably best not in a regular post, as it will tend to get buried down the page in time). Or you could add it to the descriptive stuff on your own social media page perhaps. It seems to me that there are many ways it could be used, to identify other autism-positive types.

If you’re not sure what being autism-positive means, exactly, I defined it here in a recent blog post. It’s exactly what it says – someone who takes a positive and accepting approach to autism, rather than talking of curing, ‘defeating’ or ‘fighting’ autism, and other such negativity.

Anyway, hope you like the idea.

Friday, 18 November 2016

I'm Tired of People Defining Me


I’m tired of people trying to define me. My whole life, people have been telling me who and what I am, how I should act or react, and how I should live my life.

It started very young. When I complained about bright lights or strong smells or loud noises, they told me “it’s not that bad”, and I should “stop being such a whinger”. When I was a teenager, I was told I “shouldn’t be so anti-social”, and I should “just make friends”, as though this was easy. If I tried to say I couldn’t do something, I was told that “of course” I could do it, and that I was just being “unco-operative”.

If I wore certain clothes that I felt comfortable in, I was either ridiculed or pressured into wearing more “fashionable” clothes. I was told that my behaviour was “rude” and “un-ladylike”, and that I must be “nicer” to people, especially men. Later, after I became a feminist and came out, a different bunch of women let me know I was expected to be a “right-on-sister” instead - a different set of expectations, but no let-up.

My differences were cast as personal flaws or deficiencies, and I was told that I just needed to “try harder”. They would tell me to “just relax” and “be myself”, but when I did, they said “not like THAT!” If I expressed my real feelings or thoughts, people told me I was weird, or that “nobody” felt like that, and that I needed to “shape up my ideas” or “get real”. Or they would tell me I “must” feel such-and-such, or have this or that neurosis, because of my behaviour or attitudes. I was told I should “speak up more”, or that I was talking too much and should let others have a turn. I was “too quiet” or “too loud”, “unfriendly” or “clingy” or “nosy”, and on and on. No-one, it seemed, was quite content with me, no matter what I did.

My (now-ex!) partner would oh-so-confidently explain to me what I “really” felt. Or that what I felt “wasn’t normal”, that it was symptomatic of all that was wrong with me, and that if only I listened to her and did what she told me to do, and became what she told me to be, all would be well. She told me exactly what sort of person I was, and what my faults were, in great detail. According to her, I was a terrible lover, a lousy friend, a bad mother and, she implied, deficient even as a human being.

When I became ill, some thought I was “just being lazy”, or a “piker”. Even when I finally got diagnosed with Chronic Fatigue Syndrome, it didn’t stop. There was the alternative healer who told someone else that it was a “pity” I’d been diagnosed, implying I’d use it as an “excuse” to “wallow” in my illness. And the counsellor who asked one day why didn’t I “just go for a run round the block?” This same counsellor also once spent almost an entire session ripping into me for being on a benefit. It became obvious she had a low opinion of beneficiaries, and me for being one.

Even those who accepted the diagnosis and meant well, would tell me I needed to “just take this seawater solution”, or do this or that pet therapy of theirs, or some other “miracle” cure, or “just think positively”. Or that the vitamins I was taking were “just expensive pee”, always without asking me what worked for me.

And then I discovered Asperger's and autism, and oh look, another lot of definitions. The ‘experts’ solemnly pronounced me incapable of empathy, of having emotions, of understanding others or even myself, of being able to relate to others or be a good parent, etc, etc, etc. It seemed that, once again, I was a deficient creature, barely even a human being, in the eyes of others who had never even met me.

Being autistic and physically disabled aren’t the only things about me which others have used to try and define me of course. Religions have tried to reduce my innate sexuality to a mere “lifestyle choice”, and tell me that I’m a “sinner”, and even claim, as one NZ religious leader has, that gays cause earthquakes (no, I’m not kidding).

Men have tried to ‘mansplain’ things to me, told me I “should smile more”, or suggested I “don’t understand” how the world works. Able-bodied people have tried to ‘able-splain’, in the same patronising fashion, without bothering to find out first what I actually already know or don’t know. Or they’ve treated me as if I was mentally deficient, again without bothering to find out anything about me.

Sometimes even other autistics don’t understand me, their image of me seems to be incomplete, or even totally wrong, like the one who told me I was a “man-hater”, when I challenged his sexism. It never seems to end.

But my feeling now is – NO.

NO.

Enough.

I’ve had enough of this. I refuse to allow my life, my very self, to be defined by anyone else, ever again. I am what I am, and that’s good enough for me. And it’s just going to have to be good enough for the world too.

Everyone has their bottom line, the point beyond which they won’t and can’t go, and this is mine.

I don’t mean I’m going to go around wildly starting arguments or pushing anything on anyone. I do mean I will stand my ground, and no longer allow others to define me, to tell me what I am or should be or how I should live my life. I will back off, but I won’t back down.

This is me. The real me, as defined by me. Get used to it.

Thursday, 27 October 2016

The Individual Is NOT The Enemy


Over the last few months, I’ve become aware of a great deal of dissension, quarrelling, and general lack of harmony in the autistic community, most especially online. It seems to lead to a lot of quarrelling between individuals, which often turns quite nasty. I wrote my recent blog post on bullying, in part because I felt that at least some of this discord resulted from misunderstanding of other people’s words, and the consequent loss of temper.

However I see now there is a bigger problem, and that is that we autistics often can’t SEE the bigger problem. So I want to put an idea forward, and I’m going to capitalise it, so it sears into people’s minds.

The Individual Is Not The Enemy. I’ll say that again, because it’s very important – The Individual Is NOT The Enemy. 

What do I mean by this? It’s simple. We’re a very mixed bunch, often with little in common but our autism, and there are always going to be other autistics we can’t get along with. People whose beliefs we think are stupid or illogical or sexist or racist or whatever. People who make us shudder, who we wouldn’t want to even be in the same room with, let alone the same community. People who we think are nasty, egotistical, manipulative, bullies, trolls, or any number of other insults or labels, take your pick.

But they are NOT the Real Enemy. They are a nuisance, and often painful to interact with, but they’re not the real foe.

So who, or rather, WHAT is? The Enemy, as I see it, is twofold.
1)     The systematic oppression and repression of autistics everywhere.
2)     The disharmony amongst ourselves that stops us effectively getting together and fighting the Number 1 Enemy.

While we squabble amongst ourselves online, horrible things are happening to us in the real world. Autistic kids are getting dosed with bleach or turps (yes, turps!), or unsafe and bizarre blood products or overdoses of supplements, or shoved into hyperbaric chambers, or being drilled in the ‘compliance training’ that is ABA at its worst. Autistics of all ages are being discriminated against, sacked, excluded, rejected, locked up, harassed, raged at, bullied, assaulted and even killed. And our murderers are excused (as are the murderers of almost anyone with a disability), because our lives are deemed less valuable, and killing us a ‘mercy’.

And if we do dare to speak up, we’re told that we’re ‘too high-functioning’, that we can’t speak for the ‘real’ autistics. But we know that no matter our supposed functioning, none of us deserve to be treated like this. And that the line between functioning levels is both imaginary and arbitrary anyway, and that at any time, we might step across it, and hence become a target for that kind of treatment – and indeed many of us have.

Meanwhile, misunderstandings about just what autism really is are everywhere, in the media, the education systems, amongst professionals, and the public at large. We are repeatedly told that we are an epidemic, a disease, a burden, a disorder, broken, brain-damaged, thieves of the ‘real’ person supposedly hidden beneath our autism, or all hackers and criminals, emotionless zombies, ‘like psychopaths’, mass murderers, etc, etc.

And all this will continue as long as we allow it to. It’s not going to be easy to stop it, but we have to do it, because no-one else is going to do it for us. We are the ones being dumped on, and we are the ones who must stop it. But we can’t do it if we’re divided and fighting amongst ourselves.

So I believe it’s time to take a good look at how we interact with each other. To resist the temptation to throw insults if we disagree with someone. To control our tempers, and if we can’t, to take time out until we can. To keep our dialogues and disagreements respectful. To argue the issue, not the person.

I know remembering all this in the heat of the moment is hard, and that it seems to be harder for us to forgive and let go of our anger and hurt, especially when we can’t see any reason why we should. I’ve been there, done that too, alas, all too often.

But it truly is a waste of our energy. Because – and remember the point I made above – The Individual Is Not The Enemy. They really aren’t. They may seem like it at the time, but the actual enemy is out there, and crapping from a great height on each and everyone of us. All. The. Time.

So I believe it’s time for each of us to step up and become ‘the bigger person’. To let old hurts go, and old sins. We don’t all have to be best buddies, but we can keep it civil, and work together when necessary (or apart, if necessary), to change the world.

I’m not saying it’s easy. But I am saying it can be done.

Let’s do it.

Friday, 30 September 2016

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…

Thursday, 8 September 2016

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?