What NT's Get Wrong About Us - Or The Art of Tightrope Walking

It’s become more and more obvious to me that many NTs really DON’T understand those on the spectrum. Even when they think they do. They misinterpret us, usually to our detriment and their puzzlement. This isn’t always entirely their fault, as often no-one has really explained to them how our minds work.

But other times, and all too often, it’s because they try to interpret us according to NT standards of behaviour, ie they see us doing something, and assume that we are doing it for the same reasons, and in the same way, that they and/or other NTs would do it. It’s an unconscious assumption, but a crucial one nonetheless.

A typical example is the many possible reasons why we don’t make eye contact. It’s very rarely for the reason that NTs assume, ie that we “aren’t interested in other people”.

But a bigger and far more important fallacy is the one surrounding social skills. There seems to be this underlying assumption that once we learn social skills, we’re set. That it’s like learning to ride a bike, or read, or bring a spoon to your mouth – ie, a skill almost automatic once learnt.

When actually social interaction, for us, is more like tightrope walking. By this I mean that even when the skills are thoroughly learnt, we still have to pay 150% of our attention to the task throughout, or risk one heck of a fall. Literally every step has to be made v-e-r-y carefully, total concentration, often difficult when there is lots of ‘audience noise’ (eg background chatter). It is, in essence, a performance.

This means when I’m interacting with NTs, I have a kind of running commentary inside my head, something like this – “Oh, they’ve said hello, okay, say hello back, they’re looking at me expectantly, oh yeah I say xyz next, phew, that went over okay, oh now they’ve replied, what do I say next, try abc, oh and remember to get the body language and voice tone right, yes, that was right, cool, and they’ve replied to that, here we go, try this…” And on and on, a pretty much constant and conscious process.

NOW do you understand why autistics describe social interaction as ‘hard work’?!

I don’t in fact think of  these tactics as ‘social skills’. Rather, I think of them as ‘scripts’, rather like those an actor uses. Inside my head, I have a sort of mental library or vast filing cabinet, called “Appropriate Things to Say and Do, and How To Say and Do Them”. It’s full of ‘folders’ for each situation or context, and I am constantly accessing the scripts they contain.

There are few situations now that I have absolutely no script for, and if faced with one I can usually cobble something together from other scripts. And yet I still get it wrong, many a time. When I do, it’s usually because I’ve accessed the wrong ‘folder’, usually through tiredness or stress, though sometimes it’s because I’ve misread a situation, or simply don’t get the body language etc right. And sometimes I just forget, and blurt out stuff without putting it through the mental filter first.

And remember that I’ve spent decades polishing my social skills. When I was younger, and probably for many autistics now, the internal dialogue went more like this – “Oh they’ve said hello, okay say hello back… uh, now what… *BLANK*…. Oh yeah say how are you…. *BLANK* …Um, um, um… *BLANK BLANK BLANK*…. *blurt out something stupid*…” And so on. My mental filing cabinet was small, and with very few folders in it.

Another comparison I sometimes use is to the task of someone negotiating their way through a minefield. Once again, even if well-trained and with the right equipment, 100% of concentration is required, or something will blow up in your face.

And I can’t emphasise enough that this has NOTHING to do with whether or not we like someone, or like people in general, or want to get to know them or be friends with them or not. It’s simply a matter of how polished our scripts are (or how good our mine detection skills are), what scripts we can access easily or correctly, and what might get in the way of using those scripts the best we know how.

So I say to NTs – if we make a social mistake, please don’t get hostile. We’ve accessed the wrong script, or don’t have one for that situation, or something is interfering with our ability to use what we do know. Please, don’t jump to assumptions that we’re doing it for the same reason/s that you or another NT would.

And to other autistics I say, don’t beat yourself up if you make a social blunder or don’t know what to say or do in any situation. We can’t use what we don’t know, or use what we do know well under stress. And honestly, apart from the basic stuff of politeness such as hello, goodbye, please, thank you, waiting your turn etc, I really don’t think we should be putting TOO much effort into learning these skills, unless you really want to of course. I did so for too many years, and it really didn’t help me that much in the long run.

Social skills can be useful, but they’re not the be-all and end-all of making our way in the world. We have far, far more important things to focus on, than whether or not we say ‘hi how are you’ in the right place and the right way.

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!

The page can be found at https://www.facebook.com/strangeringodzone/

Enjoy!

#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.

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.

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.

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?

What Is Bullying - And What Isn't

Lately, I’ve been seeing a lot of accusations of bullying thrown about in our Facebook groups, or on people’s personal pages, and I find it troubling. And no, I am not going to name names, as they are not my stories to tell. Suffice to say, I’ve noticed that often, the ones crying loudest and longest about being ‘bullied’ are the ones actually doing it, while their supposed ‘bullies’ can do little but grit their teeth and suffer in silence.
It also seems to me that many of us, lacking in social skills and intuition as we are, have difficulty defining exactly what is happening when someone has a negative reaction to something they’ve said, so tend to call any behaviour they don’t like ‘bullying’. So I thought I’d get it clear just what is bullying, and what isn’t.

The following are not pleasant, certainly, but they are NOT bullying.

Arguing with you. We are a quarrelsome lot, with many different outlooks on life. So people will disagree with your opinion, often forcefully. Which is okay, as long as it’s done respectfully. If you really don’t want to argue, you can always simply say “let’s agree to disagree.”

Challenging your perceived racism/sexism/homophobia/etc. Being told that you’re displaying one of the ‘isms’ is never nice. But sometimes it’s necessary, at least in the other person’s eyes. Even if you don’t feel that you are prejudiced, your being willing to at least look at what you’ve said is usually all that they want.

Challenging your thinking processes. We often pride ourselves on being logical, and hate seeing others thinking illogically. So you’ll occasionally get challenged on this. In itself, it doesn’t mean they hate you or anything, or are putting you down. Once again, respect is the key.

The other person losing their temper. None of us are saints. A lot of us are emotionally volatile. And yes, sometimes somebody will lose their cool and end up saying things they know they shouldn’t. And yes, it can be hurtful. But if this isn’t their usual behaviour, then maybe it’s time to step back and let things cool down.

Teasing and joking. This can actually be done affectionately. Unfortunately, not every autie will recognise when it’s being done. But as long as it’s not done maliciously, then it’s still not bullying.

So what IS bullying?

We’re all familiar with the physical “schoolyard bully”, but online is a different matter. There are many different ways bullying can be perpetuated via social media, but I’ve focussed here on the ones I’ve personally seen happening.

Harassment. People can be harassed online much as they are in real life, through repeated insults, scorn, putdowns, contempt, or even ‘gaslighting’. Harassers can also slavishly follow someone around from group to group, so that their victim never feels safe.

Slander. Some seem to take delight in spreading malicious rumours and false allegations about others they dislike, in order to damage their reputations. Even if the person being slandered is blocked, they usually hear about the rumours anyway.

“Hate so-and-so” groups. These are an outgrowth of the slander method, where a bunch of people who have decided they dislike someone, start a group designed solely to attack that person, rounding up others to join them in their viciousness. By this time, no matter how little truth there is in the allegations, they’ve taken on a life of their own. Unfortunately, many who don’t know the person concerned just accept what they’re told, and fail to do their own research.

Dumping/blocking. Another method of the haters. They actively campaign to have the hated one discredited in and/or dumped from as many groups as possible, even ones they’re admins of. Often accompanied by blocking, this leaves their victim without any means of responding, or counteracting the vileness being spread about them.

Trolling. A troll is traditionally someone who comes into a group or chat room, etc, and baits the members with inflammatory statements. But by repeatedly doing so, trolls can also bully those groups and their members, to the point where they no longer feel safe there.

Videos. Youtube is a great thing. You can make a video about anything you want. Trouble is, no veracity, no double-checking of your story, is required. The result can be a very spiteful and hurtful smear of others, with little chance for them to set the record straight, or counteract the harmful impressions given.

Intimidation. If none of the other techniques satisfy them, the bully might step up their efforts, including threatening to get their victim ejected from offline organisations, or even of tracking them down in real life (“I can trace your URL”).

There are lots of websites on how to cope and deal with bullies, so I’m not going to discuss that here. What I’m concerned with is two things – firstly, that often if the victim tries to respond in kind, they can end up being seen as the ‘bully’, as the original bully or bullies’ campaigns have been largely in the shadows, or misinterpreted by others.

My second and even bigger concern is how so many of us don’t recognise these people as bullies, or allow them too much latitude, simply because they’re autistic (“They just made a few mistakes, they didn’t really mean it”, etc). We can be extremely naïve in this regard, and tend to take others’ words at face value, not recognising what’s happening, or the awful toll it takes on their victims.

I hate to admit it, but not every aspie/autie is a beautiful person. We have our ‘bad eggs’ like any other group. Make no mistake, these people are extraordinarily manipulative and dangerous creatures. Please, if you notice anything like this happening, do not give the bullies any of your support.

Computer Games and Life - Revisited

A while back, I wrote a post about how the computer game Solitaire is a lot like my life. More recently, I’ve been playing a lot of FreeCell, and you know what? I’ve realised it’s pretty much the same.

Sometimes, for instance, I seem to be doing okay, but then I suddenly reach a dead-end, there’s nowhere to go, nothing more I can do. Or I have this troubling feeling that I’ve gone wrong somewhere, only I’m not sure where…  So I go through it all again, move by move, but I’m rarely able to figure out where I went wrong. I’m always left with this feeling like there is One Key Thing that I’ve somehow missed.

If I can’t be bothered with that, I restart the game, or abandon it and start a new one. And yes, that means the ‘this counts as a loss in your statistics… (you loser!)’ message popping up. Again, and again, and again. Like I need reminding. 

Repeated failures usually only mean that I become reckless, and lose all the faster, and more decisively. Sometimes, I feel like I can’t win at all. Sometimes, I even become cynical, and feel like the games are rigged, or that they’re somehow getting harder and harder.

Part of my problem, I’ve realised, is that I tend to become too obsessed with ‘tidying up this part here’, or ‘what’s happening in this corner’, and neglecting the bigger picture. And I don’t learn from my mistakes either, because every game feels different. It’s like walking into different rooms, with different people, indulging in different antics and power plays, and you have to figure it all out anew.

So often, I wish I could just once go straight through a game, without hesitation, backtracking, second-guessing, and blind trial-and-error. And when I do finally win through, the feeling is “Duh, but of course, it’s done that way, how else could it be done?!!” And feeling like Everybody Else would know this, and wonder why I couldn’t see it.

Small wonder then, that I’ve always seen myself as stupid.

In fact I never really ‘get it’, and I never will, I see that now. And I’ve realised that with this game too, there are ones I shouldn’t even start. Trouble is, it’s hard to spot them. A game can seem welcoming, promising, but then a while into it, suddenly, you’re in the swamp up to your neck, and with no idea how you got there or how to get out of it, other than just walking away.  

And what does it mean, to walk away? Do you forswear all games, or just start an entirely new type, hoping that this time it will work out okay? Not likely, when you’re just as ignorant, just as hopeless outclassed, as you were the first time you played.

Of course, technically I could stop playing games altogether, and find something else to do. But life itself is a series of games, and you have to play one or another, in the end.

Autistics Who Don't Fit The Stereotypes

We autistics are usually all too well aware of how the public image of autism is grossly inaccurate. The stereotypical autistic is usually seen as either –

a)     The non-verbal or barely verbal young boy, presumed to be intellectually disabled, non-toilet-trained, faecal smearing, constantly stimming, refusing to be touched or cuddled, with frequent meltdowns, and running away any chance he gets;

OR –

b)     The Asperger's-type geeky adolescent male, neck-deep in computers, who can code better than he can talk, with minimal social skills, emotionally cold, uninterested in making friends, and probably with questionable personal hygiene.

The professionals, meanwhile, describe us as being ‘deficient’ in things like theory of mind or empathy, and tell us we can’t imagine what others are feeling, or understand ourselves properly for that matter, or grasp abstract concepts, philosophical ideas, and so on.

We know that these stereotypes are not true, but even amongst ourselves, we can fall into the mistake of over-generalising. We’re much preoccupied with building community right now, searching amongst ourselves for similarities. We’re doing a lot of “Do you feel this, experience this?” or “Does anyone know what I mean by…?”; type stuff in our groups. We share, we support, we revel in our alikeness, after so many years of being always the ‘different one’, the outcast, outsider, weirdo, or reject.

And this is an excellent and much-needed thing. However, there is one drawback to it. And that is in our eagerness to find and share our similarities, we may gloss over our very real differences. Yes, we all have our autism in common, that ‘different brain’, but that can manifest in so many different ways.

Because for every behaviour or response or trait that even we think of as being ‘typically’ autistic, we can find someone on the spectrum who doesn’t have it, or do it.

Some of us, of course, are female, or non-white (a group waaay under-diagnosed), or not even in Western countries. We come from both genders and the inter-gender, all races and nationalities and religions and sexualities, all classes and sub-sections of humanity, and all ages too (you don’t stop being autistic the day you turn eighteen!).

But that’s only the tip of the iceberg. There are autistics, for instance, who are fine with eye contact, extroverted autistics who enjoy other people’s company, and who can do, and sometimes prefer, small talk, and autistics who find routines tiring rather than helpful, or who are comfortable with change and variety, or even crave it, hating being ‘stuck in a rut’.

There are autistics who have never had a meltdown, who are hypo-sensitive to sensory input, especially pain, whose stims are non-existent or kept very quiet and private or non-obvious, who have no particular ‘special interests’, or who are hopeless with maths and/or technology, preferring the social sciences or the arts or just about anything but computers.

There are whimsical autistics, and those who are totally serious. Many of us have a good sense of humour, although there are a few who must have been behind the door when they were handed out. There are autistics who can handle and even do sarcasm and metaphor, and those who can understand and use abstract or figurative language and/or philosophical concepts just fine.

And while many autistics struggle with friendships and/or relationships, choose not to try for them, or truly don’t want them, many others are able to build long-lasting connections with others, even marrying and/or having children. There are also many autistics who have no problem with physical or verbal affection, including to their children, though they vary a lot as to who with, and how and when, they express it to adults.

There are even autistics who can read facial expressions, though usually after many years of deliberately studying other people, while others are still on the beginnings of this process, or find themselves incapable of even beginning it. Some of us have learnt social skills to the point where we’re actually quite socially savvy, and some are just naturally ‘social beings’, and can work well in team or group situations, including workplaces.

There are also autistics who don’t have autism as their main identity, not because they view it negatively or reject it, but because other factors dominate their lives far more. These factors can include mental health problems, physical health problems, a racial, ethnic, cultural or religious identity, or indeed just about anything that they feel has shaped their lives far more than autism has.

There are even autistics who do (seem to) fit the popular stereotypes, though I personally feel that this is more superficial than real – there’s probably a good intelligence behind at least some of those non-verbal/barely verbal fronts, for instance, if the examples of autistics like Amy Sequenzia, Carly Fleischmann, Ido Kedar or Tito Mukhopadhyay are anything to go by.

This list could probably be even longer, but you get the picture. My point here, is that every time we say “autistics have/do…”, rather than “many/some autistics have/do…” we risk isolating those who differ from our type of autism, leaving them feeling left out and more alone than ever. Sometimes an autistic is rejected or attacked by others as ‘not properly autistic’, on precisely these grounds. And yes, that can and has happened, and it’s often very distressing to the individual concerned.

We need to be conscious that although we all have the different neurology that is the core of our autism, everyone expresses that neurology differently, and will have many other defining characteristics as well. We need to remember that our autism is only our autism, not everyone else’s.

And we all have the right to be whatever type of autistic we are, even if that doesn’t fit the majority view of ‘what autism is’, even in our own communities.

A Restless Spirit

This is going to be a more personal blog post than I usually do, and I’m uncertain how many others on the spectrum, if anyone, would identify with some of this.

Anyway, what’s been happening for me lately is the return of a perennial problem – a kind of deep-down restlessness. It’s afflicted me many times in the past, from childhood on, but I’ve never figured what it is I really want. I’ve tried assuaging it with this and that, speculated on what it might be from – winter blues, needing to be more creative, meditate more and better, go for a trip somewhere? - but with never any real answers.

I do know, or at least think, that it arises out of a kind of split or duality in my nature, two forces pulling me in totally different directions – and that have also been there my whole life.

On the one hand, is the side of me that likes order, tidiness, regularity, routine, everything fixed in its place, my life lined up like centimetres on a ruler. This side of me, as you might guess, is intrinsically linked to my autism. It’s the force that sees me religiously keep to my daily rituals, tidy my drawers so neatly that my mother once joked “are you sure you’re my daughter?”, and clean so hard it’s a wonder I don’t rub the pattern off things.

It’s also the part that gets flustered if things don’t go according to plan, or if something is out of place, the part that gets upset, or even panicky and close to meltdown, if there are serious disruptions to my routines and order. In recent decades, it’s the force that has driven me towards a semi-reclusive lifestyle, shying away from the world and curling in on my order like a wounded creature crawling into shelter. And in a sense, I was, and am. The world is messy, chaotic and unpredictable, and not nice to autistics. I’ve been damaged, as many autistics have been.

I’d be willing to bet many autistics, by this point, are nodding their heads and going “uh-huh, yep, I so know what you mean!”

But there’s another side to me.

It’s the side that craves stimulation, excitement, variety and yes, even change. That, every now and again, longs to break out of the box I’ve created for myself, this half-life that isn’t really a life at all, grab a few essentials, jump in my car and drive somewhere I’ve never been before, visit towns or even countries I’ve never been to, see sights I’ve always longed to see (Eiffel Tower, anyone? Stonehenge? No?), and do things the orderly side of me would look at in horror.

It’s the side of me that even remotely contemplates a relationship, even if it’s at some distant time in the future – something my other side shies away from like a nervous horse. It’s certainly the side of me that wants to see more of my aspie friends, be more ‘sociable’, have more of a life, in short.

It’s also the force that compels me to write, the side of me that, more and more, wants to grab the world by the throat, yell “listen to me!”, and tell them what it’s really like, being autistic. That wants to shout from the rooftops the truth of my life, and that of others on the spectrum. That wants to go back out into the world as a strong, independent and authentic aspie, and tell the world to Deal With It. Whereas my other side would prefer to stay cowering in my little cocoon of safety, hoping no-one will even notice I’m here.

The tension between these two forces within me is powerful. My orderly side would be quite happy living a near-monastic existence on some remote hilltop or plateau. My excitement-seeking side, however, would prefer the beating heart of a city. Tugged this way and that, by this need and that, I lurch from isolation to interaction and back again. I go away for a few days, enjoy myself, but then gratefully flee back home into my orderly little shelter. (Or should I say shell?) I go to an event, and then come home and crawl into bed for a couple of days. And so on.

At different times in my life, one side or the other has ruled. In my younger years, for example, my more adventurous side pushed me into social movements like feminism and anti-racism, fighting for the principles I believed in. I waved placards, chanted slogans, marched and demonstrated to stop the Springbok tour, defeat sexism, deny nuclear ships a welcome on our shores, return Maori land, and generally demand a better, fairer world. I was an ‘angry young woman’.

But then I started getting sick, and disillusioned, and heartbroken. So the ‘order’ side of me began to assert itself in a slow withdrawal from the world. And since exiting a very toxic relationship nearly twenty years ago, it’s been winning hands down. But now I feel like I’m stagnating… so the other side of me is breaking into flower again.

Overall, it’s definitely time for a weather change in my life. My autism and my CFS do pose limitations, it’s true, as does my sheer lack of funds. (Guess Stonehenge will have to wait a while.) But I do want, somehow, to have more of a life, live more authentically and more vibrantly. Somehow, I have to find a way to do this.

Watch this space.

Autistics and Their Allies Getting Together

We on the spectrum are unfortunately all too familiar with the autism-negative parents and their groups. You know who I mean I’m sure - the ‘curebie’ crowd, the ‘hate autism’ ones, the ‘autism stole my child’ and ‘autism is an epidemic/brain damage/worse than cancer/I’m going to rid my kid of autism come hell or high water’ types. We all know and dread these people.

But a Facebook post not long ago, by the mother of an autistic child, who’d been ejected from an autism parents online group for taking a more positive approach to autism, and the response from some similar-minded parents, made me aware of something that’s been growing in me for a while. Namely, the feeling that there are far more ‘autism-positive’ parents out there than most of us are aware of. Some of these parents are on the spectrum too, but not all by any means.

I have encountered such parents now and again, over the last several years, but they always say things like “well, I’m a rare breed”, or “I’m in a tiny minority”. And given that most of the noise about autism is being made by those negative types above, or a misinformed and/or seemingly tame media, it’s understandable why they think that.

But I no longer believe they are. I think they exist in far greater numbers than either they, or we, suspect. They don’t usually seek the limelight, or go on ‘crusades’ about (against) autism, so it’s easy to overlook them. They accept their kids as they are, and don’t make a huge drama of their autism, to them, it simply is.

They may use various techniques, therapies or supports to help their kids grow and develop, but they don’t bombard them with the kind of harsh therapies we all deplore, or even too many of the not-so-harsh ones. They are simply quietly bringing them up in an autism-positive environment. And they are really, really refreshing to meet.

They’re open-minded and willing to listen to adult autistics, in fact it’s often their doing that which has helped them to become what they are, and to have the courage to shun the mainstream mindset on autism. Others seem to have come to it by themselves, with the words of autistic adults just confirming their ‘gut feeling’.

I believe it’s time for all these autism-positive parents to join together, to form groups both online and in real life, to share their different mindset and support each other, to liaise with adult autistics and advocate whenever they can for a more positive approach to autism and the elimination of such atrocities as bleach enemas.

To present, in other words, an alternative to the usual rubbish we see out there on autism, for the general public, the media, and other parents - who might be new to all this ‘autism stuff’, and really struggling, or who have been in it for a while, and are unhappy with it but don’t know of anything better.

In fact, it’s already started happening. As a result of the post I mentioned above, that mother decided to start her own group on Facebook. It’s called Autistic Allies, and it’s a place where autism-positive links and references to websites etc can be posted. There are also some other groups intended more for support, and parents actively working to see the whole bleach horror, for instance, made illegal. And whether these parents are NT or autistic themselves doesn’t seem to make much, if any, difference to their approach.

Let me be clear here – in promoting these groups, I’m not saying autism-positive parents should be thrown out of the ‘mixed’ groups that already exist on Facebook, where parents and autistics already meet and give each other advice and support. I see them as an adjunct to them, not a substitute.

So what do these groups look like?

They of course have to be careful not to be taken over by the ‘other’ sort of autism parent, so their ground rules have to be ultra-clear from the beginning.

THOSE WHO AREN’T WELCOME IN SUCH GROUPS

- anyone supporting Certain Autism Organisations (you know the ones I mean!). Initial ignorance of their true agenda might be accepted, but if they continue to support them AFTER being informed, out they must go.

- anyone espousing a ‘cure’ for autism, or posting links that lead to pages or organisations promoting it, especially those involving bleach and the like.

- anyone who advocates ABA or similar therapies.

- anyone who is into ‘pity parties’ or the ‘poor me’ thing, for having an autistic child.

- anyone who insists on normalisation or ‘being indistinguishable from their peers’ as the only worthwhile goal for their autistic child/ren.

- anyone who is negative about autism in any way, eg referring to it as a disease.

THE POSSIBLE OBJECTIVES OF SUCH GROUPS

- supporting each other in their autism-positivity.

- working on ways to get the autism-positive message out to the general public.

- working on ways to enable their autistic children to be the best damn autistics they can be, ie the ‘maximisation’ approach.

- whenever possible, reaching out to ‘new-to-autism’ parents who may be confused as to what is the best way to help their autistic child/ren.

And of course, last but certainly not least -

- listening to autistics, both adult and if possible teens and children on the spectrum, with an open mind, and liaising with them wherever possible.

Up till now autistic advocates, even collectively, have felt like a lone wolf crying in the wilderness, while the autism-positive parents have largely kept their heads down, perhaps not wanting to attract negative attention from the ‘other’ type of parents, or just getting on with their lives.

But autism-positive parents and adult autistic advocates are natural allies, and I feel it’s time to more and more actively work together, in order to change the public ‘conversation’ about autism, to change government approaches to autism, to change EVERYTHING about how autism is talked about, thought of, approached, ‘handled’ and dealt with, in every sphere of life.

Do these groups represent a turning of the tide on autism? I believe so. I hope so. I believe we can do this, and we will do this. Together, we can change the world!