On Being Aromantic

For some time now, I’ve been reading up on aromantics, and what it means to be one. And the more I read, the more I know that I am one too. It’s really the only fit explanation for the struggles with relationships that I’ve always had.

But let me emphasise here what some of the websites I’ve read also stress – that each person’s experience of being aromantic is going to be different. The common core of experience seems to be the feeling of one’s inner nature being somehow incompatible with romantic relationships.

So what does being aromantic mean for me? Firstly, let me tell what it doesn’t mean.

It doesn’t mean that I’ve never had relationships. When I was growing up, ‘everybody’ dated, got married, had kids and ‘settled down’. It was just what you did, unless you were maybe a nun or priest. Popular culture dosed me up with the romantic ideal of The Right One who would sweep off my feet, fulfil me, transform me. As a young undiagnosed autistic with a yearning to be ‘normal’, I swallowed this pretty uncritically, though I do remember saying once that I was never going to get married – because I didn’t fancy becoming a housewife – but I was laughed at by the adults. ‘You’ll change your mind when you get older!’

And in a way, I did. Or rather, I succumbed to societal expectations, and started dating. I also knew that I wanted to explore sex and have children, and a relationship seemed like the price you had to pay for that. (I’m also demi-sexual, so one-night stands don’t really do anything for me. Just to make things complicated.) And if I found my dating experiences awkward, I told myself that I just hadn’t met The Right One yet. I married and had a child, and yes, became for at least a short while a housewife. I loathed it. I finally admitted to myself that I didn’t like sex with men either. I left the marriage and came out, but all I did was switch my search from Mr Right to Ms Right.

The sex was better, but my relationships continued to be awkward failures. And after each one ended, I felt a lot of emotions, but most especially relief. The kind of relief you get when you stop doing something that’s not just inherently wrong for you, but way beyond your capabilities. I spent long periods celibate, trying to ‘sort myself out’, eventually coming to the conclusion that I just couldn’t ‘do’ relationships, and choosing to become permanently single. When I realised that I’m autistic, I thought at first that this was why I struggled with relationships, but then I realised that other autistics were able to do them way better than me. There was Something More.

It also doesn’t mean I’ve never had a ‘crush’/fallen in love. Although looking back, there was a kind of desperation in this. I was always falling for those way out of reach and/or totally unsuitable. (Maybe because they were ‘safe’?) Nor did these feelings - a heady mix of lust and turbulent emotions fueled by my yearning for the promised fulfilment/transformation - ever bring me an ounce of joy. Each time, I was convinced that this time would be ‘The One’, the one who would Change My Life, change me, make me like everyone else. It never happened. In most cases, the feelings didn’t even lead to a relationship. (The ones I did have, tended to happen without that.)

After a while, the crush would die a natural death, leaving me feeling flat and empty, but also relieved. I had myself back. Often, I would realise that the person I’d fallen so hard for was not what I’d thought they were, and become distinctly unenchanted. But I’d still do it again, and again… Eventually however it became so painful that I made a promise to myself to stop. Despite my experiences, letting go of that fantasy of transformation was difficult. I really yearned for ‘normal’. But I did succeed in letting it go, and I’m much happier now. I like my emotional balance intact.

Once I did stop falling for people and idealising them, I realised that there isn’t any magical The One anyway, especially for me, that everyone is simply human, and hence imperfect. Realising that meant that I couldn’t see any point in choosing just one person to put above all others. If they weren’t Perfect and Magical, why bother with the struggle? Ever since, I’ve invested my energies in creating significant non-romantic connections instead. It’s enriched my life whereas attempts at romantic relationships always worsened it.

So - if it’s not the above, what does being aromantic mean for me?

It means that I really don’t ‘get’ romance. I’ve always been bored by the romantic scenes in books and movies, and, in the rare instances they don’t happen, relieved. The whole hearts, flowers, moonlight thing - I mean, they’re pretty and all, but the idea that something special is supposed to happen because of them? …Um, what, exactly? Partners would scold me for being ‘unromantic’, and I tried, I really did, but I invariably just ended up feeling awkward and stupid, a failure on yet another count. I didn’t even like holding hands much. It just meant sweaty palms and being thrown off balance as I walked. Kissing, too, tended to trigger sensory overloads I didn’t understand, and which no-one else seemed to either.

I also couldn’t understand why so many, especially women, seemed prepared to sacrifice everything for a partner, even moving hundreds of miles and abandoning their former lives. I couldn’t imagine giving up my whole life for just one person. When an abusive partner did manipulate me into a degree of distancing from friends and family, I was miserable, and ended up loathing her for it.

Moreover, the older I got, the more I felt that relationships, of all kinds, are formed in the day-to-day caring things, not giving someone a bunch of flowers. It’s always mystified me that others feel this ‘Romance’ thing is so important, that their lives and relationships are lacking something vital without what feels to me like a bunch of nothing. If a romantic type can tell me what the point is, I’d be interested to know. But I still feel that it’s not something that works for me. My problems with relationships, however, go deeper still than this lack of romantic leanings.

I don’t get what others get from relationships. I used to hear people say, “oh, relationships are such hard work”, and I’d wonder, well, why do you do them then? Until the day I finally realised, they do it because they get a reward for all their hard work. They might put in, say, one part hard work, and get back maybe ten or twenty parts reward. And that’s where I differ. For me, relationships are more like ten or twenty parts hard work and one or no parts reward. In fact, I don’t even really know what the rewards are supposed to be.

I don’t need or want someone always at my side. The idea of ‘growing old’ with the same person always around makes me feel faintly nauseous or trapped. Nor do I want anyone in my face 24/7, or even just at night. I don’t like sharing a bed with anyone, let alone a house or a life. I can’t ‘meld’ my living spaces with others, rooms are either mine or someone else’s. I don’t even want a ‘listening ear’ - if I have a problem, that’s what my friends or family are for. I’m perfectly happy with living alone, being my own independent person, going my own way, not beholden to another. It’s simply how I’m built.

And being aromantic means, most of all, that I’m uncomfortable in relationships. This is something I find really hard to put into words. If I say that I was always unhappy, people tend to say ‘you just haven’t found the right person yet’, or ‘just because your past relationships were toxic, doesn’t mean you can’t have a good one’. And there’s no doubt I’ve had some bad ones. But I realised long ago that the problem isn’t bad relationships, but that relationships aren’t right FOR ME. I feel ill at ease, emotionally out of kilter, thrown off my centre, oppressed, even trapped, by them.

Trapped by the ideal of ‘partnership’, of expectations from society or partners as to how I’m supposed to be or behave, by the whole concept of going through my life in lockstep with another person. I would always feel wretchedly miserable, crowded, and suffocated. Inevitably, at some point, I would turn around and look at them and think “…who are you? What are you doing in my face, in my bed, in my house, in my life?” I’d then feel guilty, and suppress those feelings, but they would come back even stronger, and the relationship would sooner or later die.

Now, in no way am I saying that everyone should follow my path. If someone needs a partner to be happy, and they find the right person, I’m happy for them. Why would I want them to take a path that’s going to make them miserable? What good would that do? All I ask is that they accord me, and my fellow aromantics, the same freedom to choose what’s best for us as individuals. Nor am I denying the strength of the bonds they feel with their partners. I only want that non-romantic bonds be recognised as just as important.

Romantic types need to realise that the whole romantic thing just isn’t everyone’s bag. So much of our culture revolves around the unspoken assumption that everyone is either paired or seeking to be, that this is the only ‘healthy’ way to live, an assumption particularly visible right now with Valentine’s Day looming. But not everyone wants or needs a romantic partner, and it’s definitely possible to be happy without one. Some of us are simply made different. And to deny that, to not listen when we try and tell you how it is for us, feels like somewhere between gaslighting and just not getting the message. If you tell us that we ‘just need to find the right partner’, you’re projecting your own need for a romantic relationship onto us, in a manner akin to the heterosexuals who tell gays ‘you just haven’t met the right person of the opposite sex yet’.

You don’t need to understand us, just accept that we’re different. That we’re not heartless or cold, but that we get our needs for closeness and connection met in different ways. Is that really so hard to do?

A final word here for those who think I’m ‘just being trendy’, or who wonder ‘why the need for a label’. I’ve spent most of my life struggling with these feelings, and with relationships. Even when I recognised that romantic relationships were Not My Thing, I still thought I was flawed or wrong in some way for feeling this way. I kept it all to myself out of shame or fear of others not understanding. Finding that there’s a name for what I feel, for what I am, that there are others like me, has been a liberation. It’s also worth noting that I’m in my sixties – this is not just a young people’s thing. We’ve been around forever, but without any way to describe or label it, there wasn’t any way to form a positive identity around it and forge a path to self-acceptance, let alone get others to accept us. The ‘label’ is a path to freedom, not a fashion we’re following. Get used to us, because we’re not going away or changing any time soon.

WHY THE 'LABEL' IS SO IMPORTANT

I’ve written before about identity and labels, eg here. But I think that I haven’t made it quite clear why one becomes the other, and why both are so essential.

To illustrate, let me give two examples from my own life.

The first is the ‘label/identity’ of being autistic. I grew up and spent decades of my adult life knowing I was ‘different’, but having no idea why. From the age of about seven onwards, I knew there was something ‘wrong’ with me, that I wasn’t like others, and much of my life has been dominated by that fact. I spent decades trying to either find out what my ‘problem’ was, or to get rid of it, to forcibly make myself ‘normal’, and just like everyone else. Neither effort was fruitful.

I became convinced that I was just not as good as other people, that I was weak, useless, pathetic, because I couldn’t cope with or do the things that others coped with or were able to do so easily. I was told ‘don’t be so sensitive’ ‘it’s not such a big deal’, ‘what are you worrying about’, ‘you’re making a fuss about nothing’, and so on. I was laughed at for ‘moving funny’, or ‘saying daft things’, or criticised for being ‘insensitive’ or ‘rude’ or ‘selfish’. It often seemed like nothing I did was right, I became scared to do or say almost anything. In the end, I withdrew from much human interaction, because I just couldn’t cope with it.

The result of all this is that I have suffered from low self-esteem, depression, anxiety and self-hatred for most of my life. This self-hatred went so deep, that even now, I haven’t gotten rid of all of it all. But an amazing thing happened, almost by accident. I began to read up on Asperger’s and autism, in order to help a student I was working with, and quickly recognised myself in the descriptions. To say I was surprised is something of an understatement. To say I was relieved, when I finally found that there were others like me, that I wasn’t ‘one of a (weird) kind’, a sort of lemon off the human reproduction line, is even more of an understatement.

What was a label quickly became an identity, as I studied more, read more, listened to my fellow autistics, discussed my ideas with them, shared my thoughts and feelings, asking ‘is this familiar to you? Have you ever felt/done/said this? Had this reaction from others?’ And the response was overwhelmingly YES! Yes, I know what you mean, yes, I’ve done that/been in that situation/felt that, yes, I’m like you.

I’m like you.

I wonder if anyone who’s never felt like they don’t truly belong anywhere can understand how profound that can be, to have people say that to you. To be understood, to finally, finally, FINALLY  know who and what you are. To be validated. To have the right word, the right ‘label’, the right IDENTITY, to describe yourself, a community to fit into, a ‘place’ to call home. To belong.

I don’t think there are words strong enough to describe that feeling.

This autistic identity is one that’s formed over the last ten to fifteen years. But there’s another, more recent, identity that’s been forming, and that’s to do with my sexuality and gender identity.

I always knew I was ‘different’ in this respect as well, and again, I had no labels for it, no words to describe it, I just felt an unease, a sense of ‘not fitting in’ to the prescribed feminine roles. I was designated female at birth, and have a female body. All my life, I’ve been okay with this in the sense that I’ve never felt like I’m male, but... I also always knew something wasn’t quite right (on top of the ‘difference’ I mentioned above, that is). I was called a ‘tomboy’ as a child, and had a sense that I ‘wasn’t like other girls’. Then as a teen and young adult I was totally uninterested in fashion, makeup, long nails, elaborate hairdos, etc. I conformed just enough to avert criticism, but never felt happy doing so. In fact all things ‘womanly’ felt… just not me, somehow. Yet  I didn’t like very ‘masculine’ clothes, or behaviour, either. I found both extremes not just an ill-fit but almost oppressive, like a sensation of being smothered.

Then, when I was in my mid-20s, I came out as a lesbian, and thought ‘oh, this is why!’ I joined the feminist movement and lesbian community, and for years this was my world. It liberated me (or gave me an excuse, take your pick) to chuck out ‘feminine’ clothing, ditch the makeup, and wear mainly jeans, t-shirts and sneakers. But I still felt somehow different to my lesbian ‘sisters’. I never called myself a ‘woman-loving woman’, for instance, as some lesbians did. I told myself it was because it was ‘too much of a mouthful’. I felt uncomfortable with many of their behaviours, and privately ruminated on how so many of the lesbians I knew hadn’t really ‘undone their feminine conditioning’. But I still felt like I was missing something. I groped for the words to describe it, I searched the literature, but there was nothing. Just a blank void that I echoed around in.

I struggled with relationships too – I always wanted to get to know a person first before jumping into bed with them. The result was that I’d often have to choose between being sexual before I was ready to, or missing out. Mostly, I missed out. And when I did get into a relationship, the problems weren’t over then. Some difficulties were due (I see now) to my undiagnosed autism. But there was also something else that yet again I struggled to define, a sense of being trapped by the ‘romantic’ role, or by simply being in a romantic relationship. And when it ended, my biggest feeling was always one of relief - the kind of ‘oh thank god’ relief that comes when you quit doing something that’s truly beyond your capabilities.

After my last relationship ended, I drifted away from the lesbian community, mainly because I just didn’t feel like i fit in. After a while, I found the autistic community, and made new friends. This soon became a new ‘home’, not least because of its higher rate of sexuality/gender variations, and higher rate of acceptance of them. Eventually, however, some deeper, nagging sense of difference reasserted itself.

I avoided (I realised later) describing myself as a ‘woman’, or even as a ‘lesbian’, and would say things like ‘well I’m female but not feminine’. I also developed an interest in reading about trans people, and in fact anyone else who didn’t fit into the gender binary. More recently, I also found myself reading about other different gender/sexuality identities, such as intersex, asexual, aromantic, all the grey and demi-identities, non-binary, etc, without quite realising why. I soon realised that I’m almost certainly ‘demi-sexual’, and probably also ‘aromantic’, though I’m still exploring both of those. It is however a relief to know that I’m not crazy, for feeling the way I do about relationships!

But it wasn’t till a trans woman friend chanced to remark “you’re a woman if you identify as a woman”, that something clicked for me. Because even as some part of me was mentally nodding, going ‘uh huh, yup’, another part of me suddenly said “….But I don’t identify as a woman”.

Well! To say that was a shock is yet another understatement! I reeled, and then it began to click. Of COURSE I’ve never felt like a ‘typical girl’ or a ‘typical woman’, I’m not one! I dived into exploring the whole non-binary thing, and was amazed. ‘You mean, there’s actually a WORD for what I am?’ There’s a reason I don’t feel comfortable with ‘feminine’ clothing, hairstyles, behaviour, etc, but feel almost equally uncomfortable with ‘masculine’ things/behaviour? There’s a neutral territory beyond gender, devoid of extremes, that not only myself but others exist in? Wow, wow, and wow!

Anyway, although many of my friends on Facebook already know, I guess this is my official ‘coming-out’ as non-binary! In case you’re wondering, I’m still fine with female pronouns, and have no plans to change my name or official gender registration, etc. (Please also note, I’m NOT criticising any non-binary who does, everyone makes their own choices according to their inclinations and needs, and this is mine. I’m too old, too cranky, too tired, too used to my current name - which I chose for myself anyway! - to feel any need to do it, even if I had the spoons, which I most emphatically don’t.)

This is my story, but it echoes that of many others too. Discovering that ‘label’ which becomes an ‘identity’ won’t solve all your problems (I still have plenty!), but it will solve one big one – that of your core identity; knowing who and what you are. No more floundering in whatever kind of social/emotional/sexual/gender/neurological wilderness you were in before. These labels I’ve mentioned, and so many others, are providing real clarity, real self-discovery, real comfort, and a real sense of belonging/solid identities for so many now. And no-one has the right to take that away from us, and to attempt to push us back out into that wilderness.

So think on that, before you disparage ‘all this fancy label nonsense’ or talk about how you ‘don’t want your child to be labelled’, or claim ‘it’s just a fad the young are getting into’. (Need I remind people that I’m far from young? And yet here I am, non-binary etc, anyway.) You may be denying someone the chance to find themselves and their true identity, and to finally feel ‘at home’ in their own skin.

So please, just think before you judge. Close your mouth, open your heart and mind, and listen instead. You might be amazed at what you find out about those you thought you knew.

About That 'Stupid' Label...

We aspies/auties get called a lot of names, but one of the most frequent ones is stupid, or some variation of it - ‘dumb’, ‘retard[1]’, ‘dim-witted’, ‘slow’, ‘a bit thick’, etc, etc, the list is endless. Yet in practise we exhibit the full range of intelligence, and many of us who get called these things are extremely intelligent. So why do we get called ‘stupid’ so often?

I think there are many layers of reasons for this, starting with the historical.

Poor performance on IQ tests. In the past many autistics were judged low in IQ as a result of their lack of response to the tests (and possibly many still are). Other factors such as fear of the tester/test surroundings, difficulties with verbal communication, being focussed on other things, or even being in sensory overload, were not taken into account. I feel this one is slowly being overcome, as testers are now using different methods to assess us, and many of those once judged ‘low-functioning’ or ‘low IQ’ are also, with the aid of communicative technology, emerging as perfectly normal in intelligence. To the general public however, the perception is still “autistic = low in intelligence”.

Getting absorbed in our own interests or concerns. Most of us find our special interests and/or our daily organising needs far more interesting, or at least absorbing of our energies, than our social surroundings, which we can often ignore. But this can mean that people who don’t understand how our minds work, or what our needs are, can judge us to be ‘vague’, dim-witted, or ‘useless’.

Poor social skills/eye contact. If we don’t seem to notice many of the ‘little things’ others regard as important, don’t do/say the ‘polite’ things, don’t look at others, blurt out things that seem unrelated to what’s being discussed or happening, or clam up when asked questions, this can also lead others to think us unintelligent.

Auditory processing issues. Many of us, when we do listen to others, find their words can often sound garbled or ‘mashed together’, especially in noisy environments, or when several people are talking, or the speaker has their head turned away and/or speaks softly or high-pitched. It can take anywhere from a couple of seconds to several minutes to decipher what was actually said – and hence we are often slow to respond. (I’ve been called a ‘retard’ for just this reason.)

Social processing issues. When we have deciphered what’s been said, we still have to work out how to respond to it. For most of us, responses are hurriedly pulled out of a mental file of ‘Appropriate Things To Say And Do’, often with a sort of silent prayer that it’s the right one! That too can take a little while, and in the meantime, the person is waiting for a response (or more likely hasn’t waited, but has gone on talking!). If there are several people talking, we tend to get even more behind the play.

Emotional regulation issues. Our emotional responses can often be ‘inappropriate’, or even delayed, as it sometimes takes us a long time to figure out what we feel. Or we feel the emotions, but they aren’t evident in our body language. This can lead others to believe we don’t have the intelligence to properly register what’s happening around us.

Sensory processing issues. And then add on sensory overload to all the above, with background noise, smells, people moving around, visual stimulation of various kinds, and we often can’t keep up with what’s going on, or at least not until we’ve had some time alone to process everything.

Result? We can often appear considerably less than intelligent to others. (Some of them are then very surprised when we do display intelligence, especially in writing.) But even if you feel, or have been made to feel, ‘stupid’, it’s important to remember that we’re actually “not daft, but drowning”!

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[1] I don’t want to get into the whole ‘retard’ debate here [eg see Ellen Seidman’s post at www.parents.com/blogs/to-the-max/2013/03/06/autism/5-things-people-dont-get-about-the-word-retard/ ], suffice to say that I agree with those who would like to see the word banned from everyday conversation.

The Autism Label

Lately, I’ve seen discussion of the autism ‘label’ happen in quite a few places. It seems many are still confused over the difference between a ‘label’ and an ‘identity’, and unhappy about “being labelled”. I’ve written on labels and identities before (here and here), but I feel the time is right to say just a bit more about this issue.

Put simply, a ‘label’ is what others put on something or someone. It can be neutral, as in canned foods -“Baked Beans” “Onion Soup”, medical/diagnostic - “Arthritis”, “Aspergers Syndrome”, or value-laden, which can be positive or negative – “expert”, “loser”, etc.

An ‘identity’, on the other hand, is what we form for ourselves. We may take a ‘label’ and form an identity around it, use it to anchor our sense of self, or it may come from things that arise out of us, such as being ‘artistic’, ‘a good baker’, or ‘reliable’.

The impression I get is that when people resist/reject the ‘label’ of autism, it’s either:-

(a) The negative public image of autism/aspergers, means they fear becoming ‘pigeonholed’, viewed/judged by others as being ‘limited’, when in fact they know they are capable of many things which autistics are ‘not supposed’ to be able to do; or -

(b) They feel that their autism/aspergers is only part of who they are, as a person, and fear being viewed only through the lens of autism, as though explains ‘everything’ about them.

The answer to the first is of course to get ourselves out there, openly autistic, doing things and demolishing the stereotypical ideas about what we’re capable of, just like many other groups seeking liberation have had to. (I’m old enough to remember when being a woman or black meant you were considered limited in both intelligence and capabilities.) The second is a bit harder to counteract, as forming our identities is such a very personal thing.

My own identity revolves around three threads of my Self – being aspie, being creative, and being spiritual. Other threads – such as my gender, sexuality, nationality, family background, upbringing, interests, experiences and education - have also gone into weaving ‘the me that is me’, yet those three threads are ‘core’. If you know and understand them, you know and understand me. And while I’ve long known that my creativity and spirituality are so intertwined they’re effectively two aspects of the same thing, in recent years I’ve realised just how closely my aspieness is also intertwined with them. It shapes my creativity profoundly – in the words and images I use, in the way my brain and hands shape them, in the rhythms of how and when I manifest my creativity, but most especially in how I’ve never in my life been able to produce a ‘mainstream’ piece of art. My writings and paintings have never been ‘like what others produce’, and now I know why. Similarly, I now see that my spirituality is also shaped by my AS, in that it’s totally individualistic, independent of ‘established’ thought and religions, and very much about me and my relationship with the Creator, rather than conforming to the pressure of social norms, ‘wanting to belong’ somewhere, or fearing the ‘wrath of God’ for my ‘sins’ – or, for that matter, about feeling any need to ‘convert’ others to my way of thinking.

In short, I find it difficult (and unnecessary) to separate out which bit of my core identity is aspie, which bit creative, and which is spiritual. It’s all one to me. What I do know is, that denying or diminishing any one of these threads, diminishes me as a person, and denies an essential part of who I am. After all, AS has a pretty comprehensive affect on our cognitive styles, our emotional reactions and expressions, our styles of and capabilities for social interaction, even our physical and sensory reactions, so how likely is it that it’s not having some effect on how we express our individuality? To put it another way, identifying as aspie/autie doesn’t explain everything about you, but it’s likely that it does colour how you express that ‘everything’.

I also want to point out that no-one usually resists ‘labels’ that are positive or neutral – it’s only the labels that are viewed negatively by society at large, that we tend to resist. Think of the issue of using ‘person-first language’ to describe autistic people, for instance. As many autistics have asked, why would anyone want to avoid ‘labelling’ a person as autistic, if being autistic wasn’t considered a negative thing by most? Yet reframing autism as a ‘difference’, a condition that presents with both challenges and merits, could go a long way to demolishing any need to avoid ‘labelling’.

I ended my first post on this subject with the following words. Even two years on, I really can’t think of any better way to put it. “No minority group has ever changed the public image of their identity or ‘label’ by rejecting it, hiding away, or claiming to be ‘free spirits’. It’s time to change, to love our autism, to embrace a positive autistic identity. For all our sakes.”

What IS Autism, and why do we differ so much?

I’ve been thinking a good deal lately about what exactly autism is, and why it is that, despite there being a whole range of things we have in common, we differ so much in how we express that autism. As the saying goes ‘if you’ve met one autistic, you’ve met one autistic.” But why is this so?

There are several obvious superficial reasons for our differences, including gender, age cohort, background, co-morbid conditions, and simply individual personalities. Yet it seems to me that none of these truly explain them. The other obvious difference is in our functioning levels – and here, I believe, we get somewhat closer to the crux of ‘what autism is’ – and yet miss it completely.

Let me explain this further. Through my lived experience of autism and several years of keen observation, reading, and listening to my autistic peers, I have come to the following conclusions :-

1) There is only ONE autism. That is, all the different labels or categories of autism, don’t really exist. There is only one condition, and you either have it or you don’t.

2) Autism is not a set of behaviours, but a qualitatively different neurological pattern. This pattern is inborn, immovable, and largely misunderstood. It means that the way we think, process, act, react and express our emotions, and how, where and what we focus on, is radically different to that of NTs.  

3) This different pattern is the one thing all autistics have in common, the ‘base line’ of our autism. The apparent differences between low and high functioning, are largely due to how well we are able to communicate with others. Because –

4) The core or fundamental autistic state is a non-verbal one, probably picture-thinking, reacting to the world viscerally, experiencing it as a wash of sensory feed, focussing on physical objects or our inner images/feelings, far more than on other people. This is where we all seem to start from, as young children. As we grow up, some of us are able to acquire verbal language, through which we become more aware of others, and start to learn concepts and skills. Even as adults, many autistics (including me) still think predominantly in images or surges of feeling, and have to ‘translate’ our thoughts into words to communicate with others. We can also ‘lose our words’ under stress. Nevertheless, it’s pretty obvious that it’s those autistics who have the most translating ability, ie are able to more easily acquire/hang on to/use oral communication, who are most likely to be labelled high-functioning or Aspergers rather than low-functioning or classic autistics. ‘Non-verbal’ equals ‘low-intelligence’, in most people’s eyes. Yet often when these autistics do finally find a way to communicate – eg, via computerised speech devices – they are frequently revealed to have a perfectly functioning intelligence, thank you. (And are often pissed off at those who think otherwise!)

So what, you might ask, about those kids who not only have no language, but lack any other sign of ‘normal’ development, eg aren’t toilet trained, can’t dress themselves, scream constantly, etc? My gut feeling is that again, this is largely due to the communication barrier. If you can’t understand what people are saying to you, how can you grasp what they want of you, in regard to (for example) using the toilet rather than filling your pants? If you don’t even realise that communication is possible, how do you express your pain, except by screaming? Even those of us at the high-functioning end of the spectrum, especially as young children, have had the experience of knowing something, but not realising it needed to be communicated to others, and even when we did realise it, of not having the words to do so.

I admit I am not a scientist or doctor, or researcher of any kind, and my theory might sound strange or even controversial to many. Yet there is some evidence to support it. Consider, for instance, the experiences of a friend of mine, whose child is one of those lower-functioning autistic children – nine years old and non-verbal, not toilet-trained, etc. A while back, he started a course of (highly modified) ABA therapy. He is now able to use a communication ‘book’ to get across his needs (and like many children, persistently requests candy for breakfast, even though he never gets it!), and now has his first echolalic word – “No!” What fascinated me though, was her comment shortly after the therapy started, that he “didn’t seem to realise before that he could communicate with others”, that this idea was a revelation to him. Also, more recently, she has said she feels his problem with understanding spoken language is due to that “when we speak to [him] he most likely has to translate this to pictures or to whatever way his brain interprets things. On a good day, some of the message might make it through, depending on how familiar he is with those words in that order. On a bad day… none of the message will make it through. It will be a garbled mess.”

Or consider the chapter in the Loud Hands anthology, by Amanda Baggs, where she talks of how the verbal abilities of autistics like herself are “rarely stable… [it’s like] climbing a cliff.. we climb up to able to talk or understand language, and the moment we get distracted we fall back down to where words don’t exist, and have to climb up again, if we can.”[1] She implies that the more ‘rational’ and ‘verbal’ autistics don’t experience this cliff, but I’m not so sure. I think we are very likely to fall down it when we’re exhausted, ill, under severe stress, close to meltdown or shutdown or sensory overload, or already in it. We might also let ourselves slide down it for a while when alone and relaxed, perhaps communing with nature, or simply engaged in our favourite activity, temporarily giving up the struggle to express ourselves in words, and just ‘being autistic’.

I have no idea why some can ‘translate’ or ‘climb the cliff’ well, and others can’t, what difference in our brains dictates this. It’s something that I believe needs far more research – only, as the ‘experts’ seem to be far more focussed on finding cures and/or discovering more ways in which they can ‘prove’ the autistic state is an inferior or pathological one, rather than on things that might actually help us, I’m not holding my breath that it will happen. I do however feel it’s a line of enquiry which might prove helpful for all autistics, but most especially the non-verbal, if someone did find out the reason.

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[1] Baggs, Amanda, pg 233, ‘Untitled’, in Loud Hands: Autistic People Speaking, ed by Julia Bascom/The Autistic Self-Advocacy Network, 2012, The Autistic Press, Washington DC, USA.

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!!

The Autism 'Label' and the 'Disabled' Label

Another reason I suspect many on the spectrum reject the ‘label’ of autism, is because of the association with ‘disability’. Much of the little there is about autism ‘out there’ insists on calling it a ‘crippling disability’ – and few like to think of themselves as ‘crippled’, even if they have major difficulties with many areas of life. Their image of ‘crippled’ or ‘disabled’ is perhaps of someone drooling in a wheelchair, having to be looked after by others on a 24/7 basis. Or perhaps a blind or deaf person, an intellectually handicapped one, etc… “Well, I’m not like THAT!” they tell themselves.

It doesn’t help that the ‘disabled’ are often treated as though they are all intellectually handicapped, or incompetent to manage their own lives. For instance, recently two men here in NZ were not allowed to take the plane seats they had booked – because they were in wheelchairs. Not because there was no room for the chairs; rather, they were told, the airline had a policy of not allowing any disabled to fly without their ‘carers’. These were grown men, who simply happened to be paralysed from the waist down. They could take care of their own needs, and in fact were on their way to compete in a disabled sports tournament. They didn’t need ‘carers’, they told the airline staff indignantly, to no avail. They still weren’t allowed to fly. (The airline did later apologise, I must add here, though only after the men contacted the media.)

I have Chronic Fatigue Syndrome, a physical disability, and have had similar things happen to me. I have been patronised and talked down to, especially during the worst phases of my illness, till I sometimes felt like saying “it’s my body that’s weak, not my brain!!” That at times I felt I was probably more intelligent than them, made it even more insufferable.

In fact the disabled often seem to be treated as though they aren’t fully ‘human’, with the same rights and dignity as the ‘normals’. (Does this begin to sound familiar to anyone on the spectrum?) While their physical needs are better taken care of now than they used to be – eg ramp access to public buildings, disabled toilets - their psychological needs are still often brushed aside, at least by the general public. It’s presumed they should be ‘grateful’ and not complain if someone talks down to them, or literally over their head (“Does she need someone to take her to the toilet?”).

So ‘disabled’ is seen as ‘lesser than, weak, inferior’, and who would want to identify with that? This sometimes extends to not wanting to identify even with those on the spectrum who seem to be more obviously ‘disabled’, ie the ‘non-verbal’, non-toilet-trained adolescent or young adult, or anyone else obviously more ‘severely’ autistic or ‘low-functioning’. Some aspies or HFAs seem to draw a line between ‘them’ and ‘us’ – the ones who can ‘function’ in the world (albeit with difficulty), the ones who can go to school, hold down a job, start a family, hold a conversation (of sorts), etc, etc. “We’re not like them either”, seems to be the thought/feeling. (I would hasten to add here that not ALL ‘higher functioning’ autistics see things this way.)

But that line is proving more and more of an artificial one, as more and more of those once thought ‘severely autistic’ reveal themselves as capable of communication, even if it’s only on a computer keyboard or similar device. Moreover, my feeling is that the difference between ‘them’ and ‘us’ is one of degree, not kind. To draw such a line is to abandon our ‘less-able-to-pass-for-normal’ brothers and sisters. They need us, and we need them. We are all in the same boat, and what affects one ‘type’ of autistic, affects us all.

Moreover, I don’t feel there is any shame in admitting that we are ‘disabled’ in some areas of our lives. In fact, to be autistic means being disabled, at least to some degree, and in some areas of our lives. I would certainly admit to being ‘socially disabled’, and that this affects my ability to have relationships, make friends of anyone not also on the spectrum, and to relate to co-workers. I also have had major difficulties learning what are now termed ‘life skills’, which has also handicapped me in many employment situations, and I struggled for many years with ‘executive dysfunction’, until I learnt some pretty rigid ways of organising myself and my daily routines. I don’t feel ‘lesser than’, in saying this, nor do I feel my intelligence is demeaned, or my essential ‘personhood’ somehow diminished. I’m still ‘me’, and as worthy of respect as anyone else. As are you all, including those of us who are labelled ‘lower-functioning’, and as are all those people in wheelchairs, or with intellectual disabilities, or blind, or deaf, etc, etc. And the ‘normal’ people too.

We are all equal in our essential humanity, all worthy of respect as people, whatever our individual diagnoses or difficulties – or lack of them. It’s a point worth remembering.