An update on 'New Words Needed'

A while back I posted that we need two new words, one of which is  to describe discrimination/negative attitudes towards/against us. Recently, i found a new page on Facebook - 'Wipeout Neurophobia Now'.

I thought - YES!! Neurophobia! Perfect! Just the word I was looking for. So that's the word I will be using from now again, to describe the neurological equivalent of homophobia. Thank  you, whoever invented the word!!

We Need Two New Words

I said in a previous post that we need to invent a new language for ourselves. I feel we are in particular need of two new words – words which could also help us to change that deadly negative image of autism, by defining the oppression inherent in it.

Let me digress for a minute. Back in the 70s and 80s, in the lesbian-feminist and gay rights movements, we coined a word - ‘homophobia’ - that aptly described loathing/fear/hatred of non-heterosexuals. Gays and lesbians also often had ‘internalised homophobia’. This came from being gay/lesbian in a world that largely disliked and feared us, and which was still only one step away from the ‘bad old days’ when homosexuality was regarded as ‘pathological’, a ‘sickness’ to be ‘cured’. Growing up in such a world, it’s hardly surprising that so many of us learnt to hate ourselves simply for being gay, and often even after we ‘came out’ and embraced ‘gay pride’, some of that still lingered within. On the one hand, it drove down our self-esteem, as we continued to hate those ‘obviously’ gay/dyke parts of ourselves. On the other, it meant we feared/avoided/looked down on others who, in our private view, were ‘too out there’, too ‘obvious’, too ‘different’. Thus internalised homophobia kept us powerless as individuals, and fractured as a community. These things still exist today, in spite of changing attitudes – many still believe homosexuality a ‘perversion’, and raise their children to believe this too. And if some of those children turn out gay….

At around the same time, various social movements were also coining new words – such as ‘ethnocentric’, which puts a certain race, usually white, at the centre of the universe. The implications of this throughout history have been many – slavery, colonialism, and the wholesale theft or ripping away of land and resources from ‘natives’. The excusing of killing of those ‘natives’ by whites, because they were ‘only natives’, and ‘doomed’ for extinction in the face of a ‘superior’ culture anyway. Native languages and culture being seen as ‘inferior’ and ‘savage’, and harshly repressed or even outlawed. Ways of life that had existed for centuries or even millennia destroyed, tribes and families broken or obliterated, rebellions cruelly put down. Etc, etc. And like homophobia, this attitude still exists today, even if the worst excesses of colonial power/racism are safely in the past. It surfaces every time some indigenous person dares to suggest that their different viewpoint should be taken into consideration on some issue. There’s still an implicit attitude that ‘white is best’, that European culture is superior, and everything else should take second place – or third, fourth, or last.

So we need two new words that describe these same attitudes towards us on the spectrum. One that describes the fear/hatred/loathing/rejection of the state of being autistic, and of autistics themselves; and the negative attitude many autistics have towards themselves as a result. ‘Aspie-phobia’? But not all of us fit the definition of Aspergers, or want that label. ‘Autistic-phobia’? Too long, and a bit clumsy, as is ‘autie-phobia’. Another alternative is something along the lines of ‘misogyny’ or ‘misanthropy’ – mis-autism? Hmmm… Maybe not.

The second word we need is one that describes the ‘neurotypical-centric’ view of the universe that currently prevails, and which is responsible for autism being seen as ‘lesser than’, an ‘inferior’ or ‘wrong’ state to be obliterated or cured as fast as possible so that all those poor autistic people can be just like the ‘normals’. And so those ‘normals’ never have to confront the ‘different’ ones, or accept that the culture of the ‘inferior’ ones might have any validity whatsoever, or that there might be anything good about being ‘different’. ‘Neuro-centric’? Sounds like a brain disease. ‘Neurotypical-centric’? Too long again. ‘NT-centric’? Most people outside the autistic community won’t know what NT means.

I’m out of ideas, so I’m throwing the field wide open. Any ideas, anyone??

'Speaking Autistic'

I think just about every Asperger’s Syndrome or Autistic person has experienced the frustration of struggling to communicate their reality to someone not on the autistic spectrum, and failing. It’s my feeling that there are a lot of different reasons for this.

Sometimes the NT simply fails to understand what we’re trying to communicate. Some people are too impatient to truly listen to anyone else, and just dismiss our explanations before they’re halfway out of our mouths. Others just seem baffled, staring at us in blank confusion. Some, however, seem to get it, saying brightly, “oh yes, I understand!” - and then following this up with something which reveals that no, actually they don’t. I believe this is because, despite NTs’ supposedly greater empathy, they often aren’t able to ‘put themselves in the other’s place’ if that other’s ‘place’ is too radically different to their own.

At times, if we try to explain further, we hit another barrier – that of refusal to understand. If what we are saying can’t be even remotely fitted into what the NT considers ‘normal’, they reject it, telling themselves - or us - that this “can’t be” correct, that “no-one could ever think like that”, or even that it’s “proof” of something seriously “wrong” with us. (I kid you not, it has happened to me.) Dialogue usually ceases at this point.

But as well as all this, we often fail to express our truths clearly. For some, this is due to difficulty with the physical act of talking, or with organising or ‘translating’ our thoughts/mental images into words, especially under stress. Many of us have also been made to feel so much shame about our ‘difference’ that we’ve become unable to talk about it. And some of course don’t yet know or are still in the process of understanding that they’re on the spectrum, and thus of understanding that anyone else feels the way they do, and which they’ve been told forever is ‘wrong’.

But I believe there is a deeper problem – that of the language itself being inadequate to communicate the truth of our autistic lives. Too often, even those who are skilful with words, like myself, when we attempt to describe something from our reality, are told “but everyone feels like that occasionally”. This is like saying that because most everyone has felt breathless now and again, they know what it’s like to have asthma. Or that because they’ve  had a rash, they know all there is to know about living with eczema. The words of the English language (and possibly all languages) are somehow too ‘weak’, too bland or limited in meaning to convey the totality of what it means to live with autism.

Many people, for instance, suffer from a degree of social anxiety, due to lack of social skills and/or general shyness. But most wouldn’t know what it feels like to have to struggle hugely to take in what someone is saying (due to auditory processing challenges), consciously (if we can) work out any hidden meaning and try to ‘read’ the other person’s body language, block out multiple other sensory inputs – and then work out how to respond, without too much of a time lag – all at the same time. For your average NT, all this is done without thought. For those on the spectrum, it is hard work, and difficult enough with one person. With a group, or in a noisy setting, it becomes near impossible. We invariably miss so much that many of us just give up, and end up dropping out of most social activities altogether. ‘Social anxiety’ is a pale term for the potent mix of fear, hurt, shame, embarrassment, anger, avoidance and low self-esteem that results from a lifetime of such experiences.

Some words seem to mean different things to NTs than they do to us – the word ‘meltdown’, for instance. For many NTs (in terms of behaviour rather than nuclear power stations) it means a huge tantrum. But to someone on the spectrum, it means an agonizing breakdown. Many of us on the spectrum have attempted it, but it’s very difficult to express how it feels, for example, when you’ve spent too long in a crowded shopping mall, and all the noises, smells, and visual stimulations which up till then you’ve been successfully blocking or managing to ‘mute’, suddenly can’t be blocked any longer and hit you with full force, crashing down and drowning you under an intolerable weight. How your heart starts to pound, your breathing speeds up, thinking becomes incoherent, speech impossible, and all you want is to leave - NOW. And how, if you can’t leave, or people get in your face demanding “what’s wrong with you”, or start yelling at you, you can end up screaming, crying, or even throwing things, in sheer overwhelming panic and agony, all of which is misinterpreted as a mere ‘tantrum’. Either we re-define ‘meltdown’, or we need a new word.

Some words which have been coined to describe specific problems we have are just too clinical or detached. A typical example is that of ‘executive dysfunction’, a label for autistics’ difficulty with organising their daily lives. It sounds like a boardroom out of order, or a quarrelling committee. It certainly doesn’t seem to describe the extreme state many of us are familiar with. Typically, it means that we don’t really know how to organise ourselves, and when we do try, it just seems to make things worse. Our minds reel from one tangled skein of thought or haphazard activity to another, tasks are half-done or done badly and then abandoned, schedules and appointments are not kept, and we can end up standing in the midst of an overwhelming mess, reduced to tears and on the edge of that meltdown. Others tear us to shreds for our ‘failures’, we feel like failures, and struggle to just get through each day without disaster. Imagine a life where this is a frequent occurrence, and ‘executive dysfunction’ doesn’t even begin to cut it.

And we know that there are many, many more autistic experiences or states of mind for which there are no words at all, not even inadequate ones – there are only chaotic feelings, images without words to match them, or happenings which cannot be described – they can only be lived through.

Thus whenever we try to share our truths, we’re trapped and limited by these lacks in the language. Combined with NT inability or refusal to understand, and problems organising our thoughts into words, it is little wonder then, that we autistics feel as if we are “using the same words to speak a different language” to the NTs around us, and that we have ‘disabilities’ in the area of communication skills.

And no ‘social skills’ class is going to remedy that, nor can we expect NTs to change the language for us  – we have to find our own words to describe our own experiences, as have so many ‘disadvantaged’, ‘downtrodden’ or ‘minority’ groups before us. We’re only at the beginning of the process of change for us, and it’s obvious to all of us that there’s a lot of work to do. Finding - or creating - the words to express our reality is just one of those tasks, but I believe an urgent one.

Yes, I know there are some who, even if we do find the ‘right’ words, will never change their attitudes, or only very slowly – just as there were men who rejected the demands of the women’s movement, or white people who scorned the anti-racism message. (Having taken part in both these movements, back in the 80s, I can see a lot of similarities between them and the neurodiversity movement.) Nonetheless, without even the beginnings of a ‘language of our own’, we can’t begin to communicate our truths to even those NTs who might be receptive, and they can’t begin to understand, or to change their attitudes to, or practises towards, us. And until they do, we will continue to be misjudged, misunderstood, mistreated, excluded and marginalised. And I don’t know about you, but I’ve had quite enough of that.

My Outlook on Life

I’ve been meaning to do a piece on my spiritual views for ages, and I will get to it soon. But first I want to say something about my general outlook on life.

The central fact anyone needs to know about me, is that I am a spiritually-orientated person. The thing I desire the most is to be One with The Infinite. Because nothing else beats that feeling, no high or thrill of any kind. The Love of the Infinite is the most powerful force in the Universe, and if you know that Love, you cannot but help love Its creations, human beings. Or perhaps it’s more accurate to say, you cannot help but feel compassion, because humans in general are in a mess. Wars, oppression, poverty, violence and difficulties of all kinds, from large to small - we all know what a sorry state the world is in. And most of the pain is caused by humans themselves, on themselves or other humans. You have to either loathe them or feel sorry for them, and I prefer the latter. Because to allow bitterness, prejudice and intolerance into my heart, takes me away from God, and I’m not going to allow that to happen.

I admit, in my earlier years I often felt that bitterness, and even sometimes edged close to that intolerance and prejudice, because of the pain that is the inevitable result of living with undiagnosed, unknown-even-to-me Aspergers. Those on the spectrum, especially those over thirty, will know the struggle of which I speak. But though I often floundered in confusion and angst, I couldn’t ever sustain negativity, not completely, and never for long, it simply isn’t in my nature. In the end, burnt-out and worn-out from trying to be ‘normal’, I knew I had to take a different approach to life – or die. It was that stark. I couldn’t go on any longer the way I had, I was beyond even ‘running on empty’, I was bone-dry, not a drop left in the tank. It was at that point I sought out a spiritual centre and learnt meditation, consciously stepping onto the spiritual path, which I’ve been on ever since (admittedly with a good deal of meandering!). Over a decade of meditation, prayer and ‘living with God’ has not only given me tools to cope with the world, it’s helped me to understand this crazy old world better – and to feel compassion for it. I see the pain, I see the troubles, and my heart can’t help but be moved. It’s who I am, what I am.

So I feel this compassion, and naturally I want to help. Well, I’m still an aspie, and I can’t cushion things much – I speak the truth, about how I see things. But here’s the thing – I want that truth to be a way by which people are helped. As a writer, words are my stock-in-trade, and I do my damndest to use them wisely; to help people see their own Truths, to clarify their lives, understand themselves and others better, simplify complicated situations, and generally make the world a better place. (Because who the heck wants it to be a worse one?) I see this as a responsibility that comes with having a gift for using words. So though I may at times seem forthright, even blunt, it’s not with the intent to hurt, but rather with the object of ‘cutting through the thicket’, unravelling the complicated, and laying bare the heart of the problem. Sometimes, yes, this is painful. But only when the problem is clear, can people actually do something

about it. If I can’t find the right words to help someone to see their way, or if I feel unclear in myself about what’s happening, then I try to refrain from saying anything (or at least until something does become clear). I remind myself that no-one but God can know everything. (And in case you were wondering, yes, I also do this ‘cutting through the thicket’ on myself. How else do you think I learnt it?)

It may seem arrogant to some, this belief that I can help others simply through my words. Let me be clear on this - I have no illusions (a kind of wistful hope, maybe, but no illusions), that I can, simply by my words, ‘wave a magic wand’, and utterly transform people’s lives for the better. Sometimes my words are rejected, resented, or ignored. Fine, no-one has to listen to me, and I’m not the fount of all wisdom. (If I was, I’d have handled my own life better!) But I do have certain understandings, mostly gained the hard way, and if I feel I can help, I will say something. And more than that, I seek to be a channel for a Greater Wisdom – something that doesn’t come from me so much as through me. And sometimes you can sort of ‘plant seeds’ in people’s minds, which might grow and flower in time. Or just enable them to look at things a different way, empower them to make their own changes. Others have done this for me in the past, I’m simply passing the favour on.

So my philosophy can be summed up basically as – to do good whenever I can, or at least to do no harm. I figure there’s enough negative energy and aggro in the world already, and I don’t want to add to it. I want to help people when I can, and if not, then refrain from making things worse. Sounds simple, perhaps even ‘woolly-wafty-liberal’, but it’s actually pretty radical, and not always easy in practise. I admit, I have my bad times. Times when I feel down and rejecting of the world for a while; or times I curse out a driver who cuts me off in traffic and give Jesus Christ a new middle name (though this is mainly fear, because my driving reactions are not that fast, and drivers who drive recklessly or carelessly scare the crap out of me); and other times I get stressed and snap at someone, or I say the wrong thing – even when it feels right - and hurt someone’s feelings. And still other times I know there’s probably something I could say, but I’m too emotionally scattered or stressed to find the words, or the energy to say them. There are people I fail. I’m human, I have shortcomings and make mistakes and blunders like anyone else. And I’m also aspie, with all that that entails.

But the main thing is that I try. I have this approach to life, this outlook, because it’s the only way I can live with myself, the only way I can stay close to The Infinite, the only way I can be a spiritual being and a person with Aspergers, and not succumb to pain, bitterness, and the downward spiral. It’s the only way I can live. Literally.