Tuesday, 19 April 2022

Stranger in Godzone gets interviewed

 Recently, Altogether Autism, an autism organisation here in New Zealand, asked to interview me, as one of their autistic voices for Autism Acceptance Month. 

Here's the result (you may have to copy and paste to get the link to work. )

https://youtu.be/iogV8ogNuHg

Friday, 25 March 2022

Two Big Mistakes People Make About Autistics

There are two Big Mistakes that people make when interacting with autistics. Firstly, they presume we’re the same as everyone else. Secondly, they assume we’re NOT the same as everyone else.

If this sounds contradictory, let me elaborate on what I mean.

1) If people presume we’re the same as everyone else (this applies whether we have a diagnosis or not), it means that our actions are judged in that light. So if we do X behaviour, it’s presumed it’s done for the same reason that non-autistics would do it for.

The classic example is the autistic child whose teacher makes a mistake, and the child points this out – loudly, and in front of the rest of the class. The teacher reacts angrily, assuming that this is because the child is being deliberately cheeky, disrespectful, rude, or challenging their authority. The child, however, is far more likely to be simply distressed and/or confused by the teacher making a mistake, because errors can cause us actual pain. And as we’re less sensitive to social hierarchies, the student will likely just blurt out the correction. They will then be even more distressed by the teacher’s response, and possibly have a meltdown, especially if they’ve already had a hard day.

Even as an adult, working as a teacher aide in a classroom, I found myself in this situation. A teacher taught a grammar rule wrong, and it took all my self-control not to correct them. And if it was hard for me, imagine how hard it is for autistic kids not to say anything. A better outcome might be the teacher taking the child aside later, and asking them to tell them in private when they’ve made a mistake, rather than blurting it out in front of everyone. If the child knows that the teacher is sympathetic, they might be able to restrain themselves better.

Another scenario, which I’ve heard frequently from autistic adults, is an autistic employee asking an employer, manager or co-worker lots of questions about how to do a job. They then think we are challenging their authority, ‘acting stupid’ to bug them, and so on. Cue hostile response, and sometimes our being fired, demoted, punished or socially isolated. But we often do need way more guidance than most NTs would need, either because of anxiety issues or because we simply don’t know many things neurotypicals take for granted. In this situation, the probable best thing for the employer to do is to appoint someone helpful to act as a mentor, at least until we get the hang of the job, which we will probably then understand better than the other employees! If the job changes in any way, however, we will probably need further guidance.

2) People can also assume we are ‘not like others’, believing that everything an autistic does is BECAUSE they’re autistic. Implicit in this, and the tragedy at the core of this assumption, is the mistaken belief that we ‘don’t feel things like other people do’.

The classic example here is meltdowns. If it’s simply assumed that it’s a ‘symptom’ of our autism, ie that autistics are violent, disruptive, crying helplessly etc because we’re autistic, and for no other reason, then no-one will bother to dig deeper for the real causes. And thus we will likely have more meltdowns, and the destructive cycle will continue, until eventually we are deemed ‘intractable’ or ‘unreachable’, with all the horrible things that tend to follow on from that.

Whereas if people stop and think ‘well, if a non-autistic person was doing this behaviour, what reasons might they have?’, then they might occur to them that ‘oh! A non-autistic would be doing it because of stress!’ And then they might recognise that actually, we too are responding to various stresses. They might even start to realise the role that sensory overload plays in causing meltdowns. And they might start to change the classroom, office space, home environment, etc, as well as their (and others’) behaviour towards the autistic.

Because we do have feelings and emotions, oh how we do. We may not show them in the same way, or at the ‘right’ time, and sometimes we don’t even register them ourselves until later, if at all, because many of us are alexithymic as well as being autistic. But we do have them nonetheless. And to assume we don’t is to create a situation where our very real distress is ignored or, worse, punished. I can’t begin to describe the depths of the trauma all this causes. Because if it’s assumed that someone doesn’t have feelings, then it’s far more likely that they will be mistreated, abused, even sometimes killed, because it ‘doesn’t matter’ what happens to them.

The upshot of these two Big Mistakes is that in the first instance, the autistic is punished for being a ‘bad’ human. And in the second, we’re considered to not be human at all – and punished for that too, with the support we need denied us. Either way, our reality is denied, ignored or twisted and used against us. Both cause massive amounts of distress, confusion and pain to autistics. We end up feeling like no-one likes us, no-one understands us and no-one truly cares. We can become perpetually anxious, depressed, angry, or even suicidal – if the world is that unfriendly, why would we want to stay in it? Even if we don’t end it all, our lives tend to go on a downward spiral. It’s a harsh world for autistics in which these two mistakes rule people’s attitudes and behaviour towards us.

The curious thing is that, often, people make the same mistakes with the same autistic individual/s, at the same time. Our meltdowns, for instance, can be seen as ‘bad behaviour’, but also simultaneously as ‘well you know, they’re autistic…’, with a dismissive shrug. All the while, our real problems aren’t being looked at, and will sadly continue.

Sometimes these two mistakes combine in a particularly nasty way. In this approach, we’re seen as ‘NTs with holes’, ie that we are like others, but with lacks or deficiencies, which need to be corrected, the ‘holes filled in’. I call this the ‘empty autism theory’. It’s assumed that if we have the right therapy, we will become ‘just like normal’. But the ‘no feelings’ assumption plays its part here too – when we react badly to that therapy, eg if it’s boring, harsh or manipulative, causes us pain or upset, or involves long hours that other kids aren’t subjected to, our very real reactions to it are ignored, because they ‘aren’t real’, or ‘don’t count’. ABA is the prime example of this, but things like social skills classes, forcing us to forsake our special interests or to make eye contact can also fall into this category.

None of these approaches are helpful. We are not what people think we are, but we are definitely human. It’s just that we human differently. We desperately need and want you to learn our true reality, not operate on these wrong assumptions about us. These Big Mistakes are hurting us, hurting us badly, and it needs to stop.

Monday, 7 March 2022

Why Is The World Going Backwards?

 Why does the world seem to be going backwards?

Let me expand on this idea. I am a member of the post-war generation. In our childhood, Nazis were recent, and evil, history. Despite how some see ‘boomers’ now, as we grew up we saw ourselves as progressive, throwing off the ‘fuddy-duddy’ ideas of the ‘old days’. There was also an implicit belief in science, and we assumed that the world would continue to improve as a result of it. Many of us, as we got older, joined movements like feminism, civil rights, gay rights, anti-nuclear and so on. Conservative, reactionary forces were pushed back. Onward and upward from here on, we all assumed.

Over time, however, something happened. Maybe we got tired, or burnt-out, or moved on to new things. Or we just got old. And these movements ...changed. Their focus changed. A lot of the younger generation seemed to think that all the battles had been won anyway, or perhaps they were too busy just struggling to survive in the new neo-liberal economy (which, contrary to popular opinion, boomers neither invented nor put into place). We entered a new century. Society changed. The world changed.

Somehow, from somewhere, the reactionary forces have risen again. Religion, which once seemed a spent force, has surged back, gaining a new viciousness. The prejudiced, who’d seemed few and quiet for decades, have also surged back. In the US, right-wing Christians have taken control of the Republican Party, and are now trying to control the voting process and deny voting rights to minorities. Also in America, white supremacists have surged in numbers and power, infiltrating police forces. Even the Nazis have come back.

Around the world, there’s been a surge of new, egomaniacal leaders, from Trump to Putin to Bolsanaro, as well as of those willing to follow their lead or their example, who are openly and actively oppressing minorities (eg Russian gays, China’s Uighur people), or suppressing all opposition. Yes, there have been dictators in the past (think Hitler, Stalin, Idi Amin, Pinochet) but I guess we assumed that this kind of leader was a thing of the past, that the world was becoming more democratic.

As well as all this, there’s emerged, in a portion of the populace that even if small is still way, way too many, a level of mistrust of/hatred for government, media, scientists and doctors that is beyond reason, and a phenomenal growth in anti-vax sentiments, something that would have shocked and baffled previous generations, who eagerly embraced new vaccines as a public good.

So what happened?

Why does the world seem to be reverting to the philosophies of a former era, only with some deadly and vicious new twists?

When and how did it become okay to be a Nazi, to say ‘six million wasn’t enough’, and to have *actual* torchlit processions in the streets? When did it become okay again to be openly racist? And when and how did hippies, New Agers and other ‘leftie-ish’ types become allied with *actual* Nazis and white supremacists?

When did a subset of feminists turn into transphobic TERFS? How did they hijack feminism to mean actively working to suppress trans rights and freedoms? (Yes, back in the day these opinions were around, but rarely and only casually expressed, there wasn’t this vehemence, and they certainly weren’t organised.)

When did science and medicine lose their rep so badly that many not only don’t understand them, but consider them corrupt? When did it become okay to be an anti-vaxxer, and not get laughed out of the neighbourhood as dangerous or deluded? When did the tide of misinformation start? Is Wakefield totally to blame, or is there more to it?

When did expertise - in any field – become a thing to be derided and ignored in favour of ‘feels’ and ‘instincts’, or some crappy website/guru/New Age ‘therapy’? When did movie stars come to be seen as more ‘knowledgeable’ about science than actual scientists? When did the ludicrous idea that nature is always beneficial and ‘nice’ gain traction?

And when did simply using your common sense and objecting to any of this come to mean that you’re ‘sheeple’, or ‘shills’ for Big Pharma, and you get told to ‘wake up’ by those who obviously slept through science class?

When did ‘I want a haircut’ become of more importance to some than public safety? How  did individual ‘rights’ come to always outweigh collective good? When did it become okay to storm or besiege your centres of government, just because you don’t like their decisions, or the result of a democratic vote?

When did it become okay to blame anything on a generation (usually boomers or millennials), rather than the real culprits, that obscenely wealthy one percent who are steadily draining the rest of us and screwing up the environment?

When did it become necessary, in the eyes of the media, to present the arguments of anti-vaxxers and other science-illiterates as a ‘legitimate viewpoint’, and interviewing them as presenting journalistic ‘balance’?

When did we go from an understanding that some politicians are corrupt, sometimes, to the belief among some that all politicians are corrupt all of the time, everywhere, and that the media are nothing more than their lackeys? When did these people start to close their ears?

When did the world, or at least a substantial part of it, lose its common sense? When did so much of what my generation fought for start falling apart? What happened to moderation? When did the (supposedly ‘civilised’) world become so damn uncivil? When did the world start going backwards?

What the heck happened? How have so many people lost the plot, so badly?

And what’s worse, is that it’s so blatantly obvious that a lot of these people just don’t care what harm they do. Dictators are becoming increasingly blatant. Putin smirks at the rest of the world’s objection to his egomaniacal invasion of the Ukraine. China threatens Taiwan. Trump openly lied, bragged and sneered. Anti-vaxxers baldly state that they don’t care about the illness and deaths they are responsible for. TERFs will post screenshots of trans people’s pain and outrage as ‘evidence’ of their ‘attacking’ ‘real’ women. Right-wingers blatantly work to undermine the ‘democracy’ they claim to prize. Reactionary forces, in general, do not care about the pain and misery they inflict. They would pull apart all we’ve gained, if they could, and replace it with far worse than anything we had before. And not blink at who gets hurt.

They. Just. Don’t. Care.

And yes, I realise that many of these attitudes had to have been only deeply buried, not totally eradicated. That we were probably kidding ourselves that humanity had turned a corner. And yes, I am deeply distressed and enraged by recent events, especially Ukraine. And YES, I know that my feelings and observations are very subjective. And I know also that there are still sensible voices and rational people in abundance, and that there has been, and continues to be, genuine progress in many areas.

And yet there are some undeniable trends.

Trends indicative of a deep distortion and malaise in our collective psyche. Something, somewhere, has become unhinged. The world all too often feels like one gigantic scream. And I don’t think this is ‘just a phase’ either, and that we will swing back again any time soon. Something has come apart, and I don’t think it’s going to come back together. We won’t come back together. Deep rifts have formed in society, over which there seems to be no crossing.

And as someone whose sexuality, gender identity, neurology, political views, degree of outspokenness and level of physical disability fall outside what’s considered acceptable by these reactionary forces, my personal safety feels under threat. This is not rhetorical or theoretical. Even in my comparatively ‘safe’ country, there have been anti-vax and anti-mandate protests, with violence and mayhem, and public figures coming out in support of them. I have heard people, in my own town, loudly claiming that vaccines contain microchips. The local paper frequently publishes letters from anti-vaxxers (and their opponents, to be fair, but once upon a time editors would have just tossed AV letters in the bin). There are anti-vaxxers even in my own street. And while New Zealand is not as religion-minded as some countries, nonetheless there’s a right-wing religious element which I keep a wary eye on.

I no longer feel safe where I am, and want to move, but I’m wondering if anywhere is truly safe anymore. I fear for the future, and part of me is glad I’m old, that I won’t live to see the outcome of all this. I don’t know where we go from here. I don’t know where there is to go from here, what we can hope for, what we can do, on an individual or collective level. It all too often seems like the progressive forces are on the back foot. Please tell me I’m wrong. Give me hope, because right now I don’t have any.

Wednesday, 12 January 2022

My Struggles With Executive Dysfunction

I’ve been thinking a lot about Executive Function Disorder. It’s mentioned frequently in the list of autistic co-occurring conditions, yet no-one really talks about it all that much. But it’s nonetheless one of the biggest problems for many of us.

Executive Function disorder (EFD for short) happens when there are differences in the chemicals in the brain which affect the frontal lobes, leading to problems with things like organisation, concentration, time and task management, prioritising attention, problem-solving, short-term memory, multi-tasking, impulsiveness and emotional regulation. It’s frequently linked to ADHD and autism, where we’re born with it, but it can also occur as the result of injury or illness which affects the same parts of the brain, eg stroke or Alzheimer’s.

This is me.

EFD is something I struggle with. Every. Single. Day. I work hard, every day - and I do mean hard - on Getting Things Done. My days are a constant wrenching process of me telling myself to do things, setting up reminders to do things, nudging, pushing and prodding myself to do things, even yelling at myself (usually silently, but yelling just the same) to do things. I make all kinds of prompts for myself – LOTS AND LOTS of lists, timers, alarms, notes in prominent places, scenarios in my head, etc, etc, etc - in my attempts to keep myself, my day, my house, my belongings, indeed my entire life, on track.

On good days, I’m moderately successful, complete at least some tasks, and feel reasonably okay about myself. I can give myself a pat on the back, and a breather at the end of the day. I feel like I’ve achieved something. Been something, or somebody. I’m okay. Sometimes I even have several good days in a row, and in the past, I would fool myself that I’d ‘changed’, ‘sorted myself out’, gotten rid of my ‘demons’. I was gonna be ‘all right now’. Not anymore.

Because, inevitably, come the bad days. The failure days. The days where I get out of bed only when something aches, or my body’s needs drive me. When I shower only when I can’t stand my stink anymore. When I eat only when my blood sugar plummets or I feel sick from not eating. When I feel stuck on the couch, looking at all the things that aren’t done, but somehow unable to get up, instead playing games on my phone, reading or just blobbing in front of the TV, or getting obsessed and spending hours online researching something. These are also the days when I tend to make it to appointments by the skin of my teeth, or go grocery shopping so late that half the perishables are gone, and all the sale bargains.

Often a reaction will set in, usually in the late afternoon or evening, when I become so angry and disgusted with myself and/or the state of my house that I rush around in a fury, trying to do as many tasks as possible, running my butt off till I collapse in exhaustion. But even once I do start a task, it’s all too easy to get side-tracked. I can end up with several jobs started, none finished, too tired to complete any, and feeling worse about myself than I did before. Some days, I even end up having a meltdown, or literally bursting out of the house for a walk, so that I can feel I’ve ‘done something’ with my day.

And of course I have to battle with myself to get any creative work done (even this blog post, which has been on the back burner for literally months), no matter how much I love doing it, no matter how much I *want* to do it, until the sheer pressure of both self-disgust and the images and words themselves force me into doing SOMETHING.

I could go on and on – there’s the whole thing, for example, of how once I set up a list, I won’t want to do anything on it, or how I’ve only achieved some measure of emotional regulation in the later stages of my life, or my always-irregular sleep patterns - but you get the picture, I’m sure.

 I’m a mess.

There are basically only four things that can propel me into action.

Firstly, dire physical need, like an achingly full bladder, extreme hunger or thirst, or being so tired I fall asleep on the couch.

Secondly, external impetus, eg a doctor’s appointment, occasions I need/want to attend, or needing to return books to the library before I gather fines. (And there’s usually A LOT of stress involved in all of these, as I check and double-check and triple-check EVERYTHING.)

Thirdly, my own disgust/anger/impatience with myself, as above.

And fourth, the urge to be creative, which has often been my saving grace, but which needs to surge up pretty strongly to overcome my natural inertia. Hence the weeks of creative inaction that are sadly all too common.

And that’s it. There is no ‘natural’ way of getting myself moving. No natural connections in the brain that enable me to ‘just do things’. I have to force myself, or be forced by external circumstances/demands. There is no other way.

It doesn’t help that my Chronic Fatigue Syndrome means I can’t keep on going once I start, I need frequent rests, but once I do stop, getting going again is, well, not easy. Ageing and related ailments also don’t help. I get more and more reluctant to start tasks that I know are going to be extra difficult. And of course, any change, any disruption or extra stress, just makes everything worse. I moved house last year, and to get back to even a degree of good habits has required an added effort.

I have improved over the years, and made progress in developing a more ‘organic’ way of responding to situations, as opposed to the harshness I used to punish myself with. But it’s still a struggle. Nothing ‘just happens’. I don’t know how other people just …get up and do stuff, going effortlessly and smoothly from one task to another. Why, I’ve always wondered, is it so easy for them, and so hard for me? I have absolutely NO – zero, zilch, nada, nix - natural impulses that keep me moving in this way, it’s an endless effort, and all too often, I still end up on the couch, telling myself to ‘get up now, get up now, NOW DAMMIT…’ Sigh.

In the old days, before I knew I am autistic, I never talked about any of this. I rarely mention it even now. It cuts too close to the bone, not surprisingly, as I’ve spent a lifetime feeling ashamed of ‘not being able to get myself together’, and going to great lengths to hide it. Some people have judged me ‘lazy’, ‘useless’ or ‘just not trying hard enough’, not realising how hard I’ve always had to work at keeping any order at all in my life. The worst part is that I believed it too, for too long, assuming I must be deficient or inferior for having to work so hard, and yet still not being able to be like other people.

And to be 100% honest, even now, it’s the one thing about my brain I would change, if I could. Other aspects of my autistic self, I’ve learnt to embrace or ameliorate, eg sensory issues. But this continues to be the biggest bugbear of my life, on a daily basis. So I will continue to wrestle with it, because, ya know, I want a life, I want to achieve things. Not to mention I don’t like living in filth.

But after 60+ years of trying, I’ve accepted that I can only manage it, not get rid of it, and I’m tired of living in shame, tired of hiding my ‘bad habits’, simply because my brain is different. This is how I’m built. On an online test for EFD, I scored 51 out of a possible 64. Not much I can do with that! I suspect that I would have scored even higher when I was younger.

But a frequent mantra of mine in recent times is ‘you are what you are. You can’t be other than what you are’. It applies to EVERYTHING that I am, including this. Learning about EFD, like learning about autism, has made all the difference to my self-esteem. I am what I am. I can be no other. I shouldn’t have to hide that true self.

And nor should any of you.