Autism Is Not An Excuse To Do Nothing

I’ve noticed a disturbing trend in some autistics, especially younger ones, namely that they consider a diagnosis of autism or Aspergers sufficient reason to ‘give up’ on life, or to not attempt anything in the least bit challenging. This was reinforced recently when I read Anita Lesko’s chapter in Different, Not Less, a book about autistic achievements and successful employment. A photojournalist and registered nurse-anaesthetist herself, with a busy life, after her diagnosis she was shocked to find that some saw their diagnosis as “like a death sentence”[1]. Like me, she’d been relieved to finally have an explanation for her ‘difference’, and had assumed others would be the same. Instead, she found people saying that they were “glad” they hadn’t had a diagnosis before then, because that would have meant that their life “would have been over” even sooner. She saw otherwise healthy young people “who had given up on living”. When Anita asked one 22-year-old woman if she had a job, she looked up from her needlepoint and said indignantly “I’m not ready for that!”

Don’t get me wrong here. I’m all too familiar with the problems aspies have in employment and education, and with the world in general, and the huge stresses we can experience. I know how it can lead to mental or even physical illness, and how we can end up ‘dropping out’ of jobs, education, etc, etc. I most whole-heartedly agree we need more accommodations and support when we do go into higher education, training or jobs. And I strongly support the idea of young autistics taking a ‘gap year’ – or more - between school and further education. But none of that is either reason or excuse to sit back and do nothing at all.

Perhaps this is one area where we older aspies, diagnosed later in life, have an advantage. We’ve been out in the world, doing all sorts of things that autistics aren’t ‘supposed’ to be able to do, and learnt both our strengths and our limits. We know what we’re capable of, because we’ve already done it. So the idea that we should ‘not even try’ is ludicrous to most of us. My own life is an example of this. I joined the workforce for the first time at 17 (totally ‘unready’, but I did it anyway), and have worked at all manner of jobs since, with varying degrees of success. Moreover, though I’ve spent a lot of time out of the workforce due to chronic illness, most years that I wasn’t too sick, I’ve done either university study or some kind of community education, back in the 80s I was in the feminist and anti-racism movements, while in the 90s I was into women’s spirituality and New Age activities. I’ve also been married to a man, spent nine years ‘married’ to a woman, raised a child, done quite a bit of volunteer work, not to mention my own creative work, amongst many other things. And yes, it was often very hard, and if I’d had more support, understanding and mentoring, maybe it would have been so much easier, I would have succeeded better, probably wouldn’t have gotten ill, and would have had a different life altogether… But, but, BUT!! NO WAY do I think I should have just sat at home and not even tried. Where on earth would that have gotten me?

These young people seem to have got hold of distorted, not to mention very limited, ideas of what being autistic means, in terms of their human potential. Anita implies their parents are largely to blame, as they drag their children from therapist to therapist, so that the children “begin to think there must be something wrong with them… [which becomes] a self-fulfilling prophecy.” Societal attitudes that autism is a ‘disease’ and a ‘tragedy’, and ‘expert’ opinions which focus on autistic ‘deficiencies’ and not on our strengths, must also share the blame. They have sucked these autistics into sharing their negativity, and are creating the very ‘burden’ that society fears. And yes, I know there are many young people with autism who are NOT like this at all, and which I loudly cheer! My concern however is that even some are, that they’re sitting around at home, lost and cut off from their own potential, believing that they “can’t” fully take part in all that life has to offer.

By doing so, they may not suffer various stresses – but they never experience the highlights of life either. They miss out on the joy and satisfaction of pouring yourself into an interesting course of study, and the absorbing and worthwhile career that can follow it. They never know the fulfilment of finally graduating after years of hard work, the honest praise of bosses and co-workers for a job well done, or the delights (and the challenges) of having relationships, children, community involvement, etc, etc.  They never experience the personal growth and development, the plumbing of their depths and testing of their limits, that all of these can bring. They’re cut off from the world, and it’s all so, so unnecessary! (Anita points out another reason for not just sitting back and giving up – namely that these young people can end up eventually in institutions or homes when their parents are gone, a valid point.)

Yes, we find so many things hugely more challenging that NTs do, and it’s up to each individual to decide how much and what they can do, but some challenges are an inevitable part of life, for everyone. These challenges fall into several categories – the ones that we can cope with okay, the ones that need to be ‘managed’ or ‘mitigated’, the ones that we should totally avoid, and the ones that will really stretch us, but which we wouldn’t miss for the world. To go back to my own life for a moment, the autism conference I recently attended fell into the latter category for me. I got there at all only because of a lot of help from my friends, it involved weeks of preparation, long bus journeys, coping with lots of noise, crowds and various anxieties, long days filled with lots of talk and walking to and fro, etc, etc, and afterwards I was exhausted, both physically and emotionally, even falling ill for a while. But I got so much out of it too – not only did I get to spend some great times with my fellow autistics, I believe the conference itself was a hugely important event, hopefully a turning point for autistics in NZ, and I am so glad I went.

Not that I am saying we all need to attend conferences, but rather that we need to teach these young people not to shy away from all difficulties that come their way. We need to show them that being diagnosed autistic is not the end of their life, just the beginning of a new phase of it. That there are ways to cope with difficulties, to ‘work around’ problems, and that we older aspies (as well as the more active younger ones) have wisdom to share about this.

Because we are all capable of so much more than just sitting around doing needlepoint and feeling sorry for ourselves. (I have no special beef against needlepoint, just that if that’s all you’re doing, it’s not much of a life.) If an autistic finds or feels that they can’t do one thing, then they should try another. If one job or profession doesn’t suit, choose a different one. If a young person doesn’t feel ready yet for university, they could still be preparing for it. Or they could do polytech study or on-the-job training instead. They could do volunteer work. The choices are endless. But what they shouldn’t do, is nothing at all! The supports (where they exist) are meant to help us participate in the world, not to keep us apart from it. And where supports don’t exist, there are still ways to get through.

I want these ‘My-Autism-Is-A-Death-Sentence’ autistics to get up off their behinds and go out into the world, in one way or another, to do something with their lives, because their idea that ‘their life is over’ when they are diagnosed, is based on a totally wrong conception of what having autism/Aspergers means. As Anita says, “It’s not a disease, it’s a way of life.” Though some would deny it, we are human beings, with all the chances and choices, the freedoms and obligations, that this means. As tempting as it can be sometimes to swear permanent retreat, especially at times of overload (that FTW feeling), all autistics need to be part of the world, in whatever way, and as much, as we can individually do, in order to have a life worth living.

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[1] This and subsequent references are from Anita’s chapter in Different, Not Less, edited by Temple Grandin, 2012, Future Horizons, Arlington, Texas; pages 205 – 206.

Altogether Autism Conference Speech

I haven't written here for awhile, as I've been busy preparing and practising a short speech I gave as one of a panel of aspies, at the Altogether Autism Conference, last week in Hamilton, New Zealand. I decided to include the full speech here, in case anyone is interested.

"Hello people, my name is Penni Winter, and I’m what’s known as a self-diagnosed, peer-confirmed aspie, or person with Aspergers. What this means, in my case, that it took about two or three years of intensive research and reading before I could accept this new identity, and it took more years and meeting with other autistics before I felt comfortable in it. It certainly wasn’t a step I took lightly, or on some kind of whim.

I always knew that I was ‘different’ ever since I was a young child, and my life certainly hasn’t been an easy one, as I basically stumbled and bumbled my way through a world that I didn’t understand, and which didn’t understand me. I suffered along the way a great deal of personal misery, not to mention chronic depression and low self-esteem. I spent decades trying to either figure out why I’m ‘different’, or to transform myself into something more ‘normal’, or to simply hide the shame of my ‘difference’. I failed badly at all of these tasks, and eventually concluded there was no label that fit me, that I was just an inferior specimen, a sort of lemon off the human production line.

Then several years back, while I was working as a teacher aide, I was assigned one term to working with a young girl with Aspergers. I had heard of Aspergers, but didn’t really know anything about it, so I decided to do some research. Imagine my shock when I recognised not just my student, but myself, in the descriptions. For the first time I saw all my idiosyncrasies listed in stark black and white. It was a revelation, just when I’d decided there was no explanation for my ‘weirdness’. Nonetheless, for a long time, I really struggled with accepting the idea of being autistic. In fact, my initial reaction was along the lines of - “Who, me? Autistic? No *expletive-deleted* way!”

And why? Firstly, because I don’t fit the common stereotypes of someone with autism or Aspergers. I was, and still am, a functional, independent adult, with plenty of verbal ability. I’m also not a child, or male, or any kind of computer geek or trainspotting nerd, I’m perfectly capable of empathy and compassion, I’m not an emotionless semi-robot, and I like to think I have a pretty good sense of humour - I can even do sarcasm, though I do often find it difficult to read other people’s sarcasm.

Secondly, the official criteria for autism seemed extremely negative to me, focussing as they do on rather dry clinical descriptions of autistic ‘deficiencies’. If I had read only those, I probably would have ended up rejecting the whole idea of being autistic, because my self-esteem was quite low enough already. Fortunately, during my forays in the library and on the Internet, I stumbled upon autobiographical books written by other autistics who I could identify with, and then forums and Facebook groups run by and for aspies, as I learnt that they – we – call ourselves.  These played a key role in my coming to accept and even embrace my autism, and, eventually, in finally ridding myself of my sense of low self-worth.

Because in the process of getting to know other autistics, I found that the stereotypes I’d held were demolished and the myths were debunked, as the ‘real’ autistics emerged from the shadows. Friendships – which had always been problematic for me – suddenly became much, much easier, as for the first time in my life, I found people ‘on my wavelength’, who thought, felt, acted and reacted ‘just like me’. A common reaction amongst us, when something was shared, was “you mean you do that or feel that too? I thought I was the only one!” So gradually, I began to think, “hmmm, these people are like me, and yet they’re not terrible people, quite the opposite in fact, maybe I’m not so bad either…” And so that huge burden of self-hatred began to slide off my shoulders.

And eventually, I met other autistics not just online, but in real life as well, most especially through ASK (Autistic Spectrum Kiwis), the group that I’m part of today. And they accepted me, just as I am, no need for shame or pretense or hiding my true self anymore. To someone who spent so long lost in a sort of social wilderness, this still seems like a minor miracle, and one which has greatly enhanced my life. I wouldn’t be where I am today, nor I think would I have a life worth living, if it weren’t for my aspie friends and connections. Because we all need our peer groups, and autistics truly are no exception.

So whether it’s for yourself, your child or student, or perhaps a client or patient, I cannot stress too much the importance for autistic people of the support and friendship of others on the spectrum - no matter what age the autistic person is – autistic children have also benefited from meeting their real peers, and making friends with ‘others like me’. But without such support and companionship, even if it’s only online, we are doomed to being always the ‘weirdo’ or the odd one out wherever we go. And I can say from bitter personal experience, that being that kind of permanent outsider is not the path to a meaningful and happy life.

Thank you for listening."

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.

Things I Don't Understand - Number Four

The last time I flew in a plane, I went sardine-class. After that experience, I thought first or ‘business’-class had to be much better. Until recently that is, when I read one Aspie’s complaint on Facebook of how first-class passengers so often seem to drench themselves with perfume. My immediate thought was – argh! No first-class for me then! I have always had real problems with strong perfumes. Once, many years ago when I was extremely ill with the CFS, I was visited at home by a woman from the agency supplying household help to me. It was one of my ‘bad’ days, and I was in bed. She stood in the doorway of my bedroom to talk to me, about ten or twelve feet away, yet even from that distance I was overwhelmed by her perfume. It was as if she’d bathed in it. By the time she left (only about 5 or 10 minutes later) I was half-fainting, even though I was already lying down! It was so bad that after she’d gone, my partner ran around opening every door and window, even though it was a chilly day, just to get the smell out.

Perhaps it’s just me, or my generation, but I was taught by my female relatives when young that perfume was to be sparingly applied, at wrists and behind ears, etc, as an alluring hint – not a portable stink-cloud that assaults the noses of anyone within twenty feet of you. (I was also taught to only wear one of each category of jewellery. My grandmother’s generation would not have understood bling!) This thing of smothering yourself in scent seems to be very much a recent phenomenon.

And then there’s the fragrances in things like soap, shower gel, shampoo, etc – why is it necessary for them to be so strongly perfumed? I have real trouble finding toiletries with perfumes/perfume levels I can tolerate, which are also relatively cheap, readily available, and without ingredients I react to. (Not to mention every time I do, they seem to change the brand or formula, but that’s another whole set of complaints.) Some have even been known to make me want to vomit, or give me headaches, and I avoid the really cheap-and-nasty shampoos, etc, for this reason.

There’s also the reek of cleaning products and disinfectants – another aspie also commented on those on Facebook recently, as she’d realised a particular disinfectant was causing her meltdowns at work. Again, why is it necessary to have them stink so strongly? Surely they could formulate products without these horrible stinks that assault the nostrils and sting the back of the throat. It seems to me that these, along with toiletries and fragrances, have all got stronger and smellier too, over the last forty years or so.

So why? What is the reason for the overwhelming amount of perfume, cologne, etc, some people use? I really don’t understand why they insist on liberally slathering themselves with them. Is it some kind of status thingy again? (I never noticed such strong odours in sardine-class.) Perhaps if people are able to afford such expensive scents, they want everyone within twenty feet to know it? (I’d be inclined to say “yeah, yeah, we get the message, you’re loaded, now can you please go and wash off at least half that stink?”)

And why is it so hard to find toiletries etc, without strong scents? Is it just my imagination, that these have been ‘amped up’ in recent decades? I don’t think this is an issue only for aspies either – with that over-perfumed woman above, my partner didn’t have to be asked to open those windows and doors, she found it overwhelming too. And surely there must be others who feel the same.

Once again, I’m left not only reeling from the sensory assaults, but from not understanding something that perhaps ‘everyone else’, or at least every NT, knows without saying.

Why We Need Autistic-Only Groups - Part Two

A while back, I wrote a post on the need for autistic-only groups. The consequent discussion on Facebook (quotes from which are included below) deepened my understanding of what actually happens when members of a ‘dominant’ group join, or try to join, a group originally meant for ‘minority’ people to get together. I became aware, or more aware, of the following things :-

1) When dominants are not allowed in, and they cry ‘discrimination’, it’s because dominants are so used to having the power to go pretty much where they please, and to totally ‘be themselves’ when they get there, that if they are kept out for any reason (or their attitudes are criticised once they do get in) they actually seem to feel hurt. I am a little mystified by this, perhaps because I’ve never been in that position (the only ‘dominant’ group I belong to is the European racial group, and I’ve never felt I had the ‘right’ to join, say, a Maori-only group). But what I am reminded of is reading Paulo Freire (I think) many years ago, who wrote about how members of the dominant groups, when their unequal status and power (hegemony) is declining or gone, will experience the loss of what they think of as ‘normal’ or their ‘rights’, and cry that they are now being discriminated against, and ‘oppressed’. And, what’s more, genuinely believe it, as they don’t see that their previous position in society was based on a distortion of power. I wonder if something of the same kind is happening here.

The problem with those in groups who are dominant, in this case NT people, is that they usually do not realise the various privileges they are experiencing due to being a part of the hegemonic group. So, when we say “well, you've come into our space and it's run under our way of interacting and we don't feel a need to accommodate you” they react with "oh you're being exclusive” when actually what they are experiencing is not being dominant. - Paula

What is interesting is that when we deny them knowledge, THEY feel excluded. They feel they have a right to know us and how we are without acknowledging that they can't. Of course they can try but they will never understand what it is to be us. - Bex.

2) Once NTs are in one of our groups, inevitably at least some of them start ‘correcting’ us. A white person allowed into a group of people of colour, would not nowadays (I hope!) start demanding they talk in Standard English, or tell them not to be so ‘emotional’, or criticise their ‘peculiar’ clothes, etc. Yet NTs allowed into our groups seem to have no hesitation about telling us what we ‘should’ be doing, how we ‘should’ be living our lives, how we ‘shouldn’t’ react in the ways we do, or criticising the way we talk and express ourselves - and get hugely miffed if we challenge that. There is an automatic assumption that their ways are superior. The result is that either we spend a lot of time explaining and justifying ourselves, and/or we start to feel oppressed in the very groups set up to escape that in the larger society.

They were starting to take it over, and question and make judgements about things that we shared, giving ‘advice’ etc that wasn't needed, as well as constantly asking us for 'advice’ (and rarely taking it). – Katy

The trouble at times with our mixed spaces is ...that often they take it for granted that they can begin to use ‘our space’ to ‘learn about us’ without respecting that Aspie spaces are created for us to be able to be ourselves, free from trying to fit into non-spectrum social interacting norms. When us explaining ourselves becomes an expectation in Aspie spaces ... self-consciousness can be created, and this impacts on how we might feel in the space. – Paula

3) An intrinsic part of this ‘correcting’ us, is a lack of understanding of what it really means to be autistic. Our freedom to be ourselves in these groups becomes sharply diminished as a result, previously free discussion dries up, and a muzzled awkwardness ensues. Such groups tend to die or become inactive in the end, because the autistics no longer feel it’s safe to talk openly (this is happening now with the group I mentioned in my first post on this subject).

Our ability to speak is drastically reduced when the message is heard by someone who cannot understand. That is why segregation empowers us. We are all equals here with equal understanding of what it is to have autism. – Bex.

The dynamics of any closed group allowing members to be true to themselves and to each other is so subtly and yet radically changed when others are permitted entry or view. In fact to the very same extent as would inviting one's extended family into a hotel honeymoon suite after the banquet to observe the inaugural conjugal act sans clothes or any bedclothes for that matter either. – John

4) Also, some (not all!) NTs who come into such groups seem to do so mostly to pump us for information or ‘advice’, which can make us feel like performing monkeys, or unpaid consultants, not to mention more than a little irritable. Our privacy is destroyed, ‘our’ space invaded, and we start to feel used.

Aspie spaces (FB pages) are not here for the purpose of parents/carers/professionals to use us to explain AS to them... it's a bit intrusive at times when non-spectrum people come into our spaces expecting that we will happily explain constantly for their benefit... when in fact we're here to discuss among ourselves and hang out with our mates basically. – Paula

The people who think they have a right to my personal thoughts and feelings that I share with you, my soul brothers and sisters, in the knowledge that you truly understand and experience the same things... those people can piss off. - Bex

5) Often in our groups, we have a moan about various problems we’re having with NTs, or poke a bit of fun or ‘turn the tables’ on NTs in humour. Private venting and humour are common ways for minorities to let off steam, and cope with their situation/s without going crazy. But some NTs then complain that we are being ‘anti-NT’ or ‘rubbishing’ them. Yet they don’t ever seem to think about the effects of their own criticism of us, eg when they talk about how ‘difficult’ the autistics in their lives are, the ‘hardship’ and ‘stress’ those autistics cause them, etc.

We've always had non-spectrum people in our groups make accusations of 'not liking' NTs people if we make the odd joke about them or vent about our issues/frustrations in dealing with non-spectrum people... which I feel is inappropriate in a Aspie run space for Aspie people. These spaces are for us.... I get irritated with the reactive behaviour especially when we turn around NT language towards us in humour towards NTs... because we're the ones joking, whereas when non-spectrum run orgs like Autism Speaks create posters and the like saying "we love our kids, but hate Autism”, they are serious. - Paula

Thus, while it may seem like being ‘nice’ or ‘inclusive’ to let NTs into all our groups, the reality is that when we do it means we can end up being silenced, bossed around, used, misinterpreted, criticised, forced to justify our very style of being, and generally oppressed. We get enough of that in the ‘real’ world, we don’t need it in ‘our’ space as well. Yes, there needs to be ‘mixed’ space, meeting grounds where issues can be discussed on equal terms, but ‘minority-only’ groups are even more important. We need autistic-only groups so that we can feel safe, empower ourselves, free our psyches from NT domination, vent if need be, and generally ‘just hang out and be autistic’. We have so little space in the world that’s truly ‘ours’, to have ‘us-only’ groups isn’t really that much to ask.

Not Sharing Our Feelings

A few months back, I accidentally jammed my fingers in a sliding door at home. As I bent over in pain, I suddenly realised that I did not want anyone there, to ‘comfort’ me. By this I mean that when I am physically hurting, my skin becomes acutely painful, I can’t bear to be touched or ‘fussed over’, or have someone put an arm round me, etc, it only magnifies my pain. But it’s also other people’s emotional reactions I find difficult – the “oh, what’s wrong, how can I help, tell me where it hurts,” sort of thing. I know they mean well, I know it’s ‘empathy’, it’s just that when I am in pain, maybe crying, I don’t have words, and don’t want to find them. Even attempting to do so actually takes me away from the pain, I move from ‘right-brain-reaction’ to ‘left-brain-explaining’, and thus the connection to my own emotional reactions to pain (or to anything), established only with difficulty in the first place and often faulty, is lost, and those emotions go deep into some inaccessible place, perhaps never to be retrieved. (Plus, I then often come across as very ‘rational’ and ‘detached’ in describing the pain, which leads some to believe I’m not hurting at all.)

But since that injury, I’ve also come to recognise that something similar goes on with many of my emotional pains. By this I mean my deepest feelings, or my ‘intense’ or ‘over-the-top’ emotional reactions, often (though not always) the stuff that can lead to meltdowns or shutdowns if I’m not careful, and which I’ve only just learnt not to be ashamed of. Over the last few years, I have been able to share a great deal of my thoughts and feelings with other autistics that I’d previously kept buried, out of that shame. But still there’s a lot of other feelings and emotions I don’t share. It’s as if I have this deep reserve of ‘stuff’ I’ve always kept pretty much private, and which I probably always will keep mostly private. And I suspect, from reading between the lines, that many other autistics have a similar cache of deep feelings they don’t share either, or not much, sometimes not even with their closest autistic friends or their partners (or perhaps only them).

So I started thinking about why that’s so, what stops us from sharing. And it seems to me that there are four main factors.

(1) Alexithymia – the difficulty we have with recognising, dealing with and expressing those emotions. We don’t know what we feel, or we can’t find the words for what we feel, or we find them far too late.

(2) The bad reaction we get when we do express them. You know what I mean – the puzzled frown, the blank ‘what-planet-do-you-come-from’ stare, the getting told “You’re so weird” or “You can’t possibly feel that, no-one feels that way, it’s not normal, what is wrong with you?”, the laughter or snide comments, the sneer as they turn away and proceed to ignore you, perhaps even using what you’ve said against you at some later point… If we get this every time we try to share our deepest selves, it’s not going to encourage us to try.

(3) The afore-mentioned shame, often as a result of (2). We become ashamed of our ways of reacting to the world, of how we see things and handle things, of our emotions, and of our very selves. I’ve written on this autistic shame before, suffice to say here that it encourages us to conceal our deeper emotions and feelings.

(4) But beyond all that, I feel there is a deeper reason why we don’t share, one not talked about much even amongst autistics, which is simply that sharing emotional stuff doesn’t come naturally to us. Think about it. We are the toddlers who, when we spot something interesting, don’t go “Wooka dat, Mumma! Ooh!” We’re the children who aren’t out in the middle of the playground yelling “Look at me, everybody! I can stand on my head!” Instead, we are drifting around the edges of that playground, barely noticing the other kids. We’re the teenagers becoming more aware of others but also finding them and their emotional demands confusing, and barely beginning to understand what ‘having a friend’ entails. We’re the adults who often find counselling or psychotherapy unhelpful, and I don’t think it’s only because the therapists often aren’t knowledgeable about autism, or that we just haven’t found the ‘right’ methods. We can learn to connect with our emotions, yes, and learn to talk about them, but it doesn’t seem to really come naturally to us. We have to work on it.

I feel this could be another area where we differ from NTs, and where we are perhaps doing ourselves a disservice in attempting to be like them. For NTs, ‘sharing’ their deeper selves and ‘connecting’ with others is essential for their emotional health, and it doesn’t occur to them that we might not find it so essential. In fact the reverse may be true - it’s been my experience that many times, I don’t feel better for having talked about my emotions, or revealed them to others. Sometimes that’s because their reactions are negative. But also it was because it just didn’t make me feel any better. It just didn’t (and often still doesn’t) ‘feel right’ to talk about such deeply personal stuff.

Yes, sometimes, it can be helpful to talk about our emotions with others, especially if they are on the spectrum too. Often through that we come to realise something isn’t really such a big deal after all, or not something to be ashamed of, or fretted and worried over for hours or days or even weeks like a dog with a bone, as we so often do. And so there’s this release, this catharsis, that can and frequently does happen, especially when we first ‘come out’ as autistic, and find the autistic community, and feel accepted by them. But I sense there is also a deep reserve within many, perhaps even most, autistics, even the ones that seem most ‘outgoing’ and ‘sociable’, that means we have a lot of stuff we keep to ourselves.

And to me, this seems perfectly okay. In many circumstances – eg when confronted with those who can’t or won’t understand us – it’s actually a damn good idea to ‘keep stum’. But even when that isn’t the case, we still have the right to choose, and if it doesn’t ‘feel right’ to reveal certain ‘stuff’, then I don’t see why we should. How much of our ‘stuff’ we do share, and when, etc, is naturally going to differ from one individual to another, and one situation to another. All I am saying is that if we keep certain things to ourselves, it’s not a Terrible Thing, and we’re not Terrible People for doing it. (Or not doing it, as the case may be. Maybe I’m wrong, and there are tons of autistics out there who happily Reveal All?)

My point is - go with what feels right for you. We have the right to do whatever ensures we feel emotionally secure, without apology or feeling ashamed of it, or of ourselves.

Autism Positivity Flash Blog post

Tuesday, April 30^th, 2013, has been designated ‘Autism Positivity Flash Blog’ Day. I’ve been deliberating on what to write about for this. The good points about being autistic? Our strengths? Sure, there are plenty, but which to choose? But finally I realised the best thing about ‘Autism Positivity’ is that it can occur at all.

And the reason it’s able to occur, is the autistic community. We, who the ‘experts’ said were ‘anti-social’, could never form communities, create our own organisations, build bonds and ties with each other – or, indeed, with anyone - have done just that. Prior to the formation of this community,  we were – and in many cases still are - isolated, muted, marooned in a sea of hostility and rejection, imprisoned by the rampant negativity and ‘hate autism’ messages that even now still dominate the public ‘discussion’ about autism. Raised to hate this core part of our very identity and selves, to collude with the concept of autism as a ‘tragedy’ and ourselves as a ‘burden’, to believe that we are worthless, unable to contribute anything to the world, many believed they would be better off dead – something many NTs were only too inclined to agree with. At best, we were objects of pity and ‘charity’, beneficiaries of the ‘poor thing, they can’t help it’ attitude. Even if we had no diagnosis, especially if we were around before diagnosis was possible, we were nonetheless conditioned to hate our ‘weirdness’. To devalue ourselves, and our ways. To deny our strengths, and at least attempt to conceal our ‘weaknesses’ or our ‘strange’ behaviours. To put up the pretense of ‘normality’, and to hope, vainly, that some day we would truly attain it, if we only tried hard enough. Certainly nearly all of us have been given that message - that if we’d ‘only try harder’ we could fit in, could be ‘just like anyone else’. We believed it. We didn’t believe in ourselves. What, after all, was there to believe in? A deficient, sub-standard creature, the only one (or so we often believed) like it in the world? A ‘lemon’ on the human production line? The rest of the world, we reasoned, could not be wrong and we right.

And then we started to meet. We started to build connections, friendships, even sometimes relationships, with each other. We began to look at each other, and think, hey, this person’s autistic, yet I really like them, they aren’t awful, aren’t worthless, aren’t a pathetic weakling… maybe I’m not so bad either… And so the first precious stirrings of self-esteem emerged. We began to see just how badly we had been, and still were (and are, and are!), being treated. We began to reject such treatment, to form a new and more positive way of looking at ourselves and each other. We began to openly reject the negative images of autism, and to campaign for ‘autism rights’. We began to see that they are, in fact, simply human rights – voting ourselves back into the human race, back up from the subhuman state the ‘experts’ and society had condemned (and in many cases are still condemning) us to.

It happened like this for me, and for so many others. I floundered and stumbled my way through the world, hating myself, concealing my ‘weirdness’ as best as I could, trying vainly to be normal, to be accepted. Then I finally began to realise that I had AS, and on the heels of that, found the AS community online, and then face to face, ‘in real life’. And it was …amazing. For the first time, I made real friends, with people who really seemed to like me, to value me, to value my opinions and want to spend time with me. Only then did I realize just how badly my earlier attempts at forming friendships had gone, how the usual fare there was coolness, being ‘shut out’, being told I was ‘just too strange’, asked ‘what planet did I come from’, laughed at, or even outright rejected. It had been painfully obvious that very few wanted to know me – and I’d grown used to that, resigned myself to the ‘fact’ that I was ‘just lousy at making friends’, and eventually given up trying to do so. But in the autistic community, I found understanding, support, and simple acceptance of who and what I am. The transition from ‘weird nobody’ to ‘esteemed friend’ was a treasure beyond dreams. The first time I realised this, I cried.

Several years on, it is still the case that if I want positive reinforcement of my place in the world, if I want to feel like I have something worthwhile to contribute, if I simply want to feel that I’m a likeable, okay sort of person, then the autism community is the place I go. Nowhere else do I get such reinforcement, such validation, such emotional support. The rest of the world may not value me, but my autistic friends do.

And I value them. This validation and reinforcement, this acceptance and even embracing of each other as autistics, is the single biggest gift we can give to ourselves and to every other autistic person in the world. Yes, we have our problems, our splits and feuds and divisions, our trolls and our undesirables. We’re not going to magically love every other autistic person we meet. And yes, we have ‘issues’ that need sorting out amongst us. But don’t walk away if you encounter problems – because this is it folks – this is our community, there is nowhere else for us to go, nowhere that will accept us, embrace us and understand us. It’s the foundation of our self-esteem, the place where we can be ourselves amongst our peers, the place where we learn to accept ourselves and our autism, to recast our entire self-image, and potentially our entire lives. It’s also the base from which we can go out into the world and change it, change the whole ‘discussion’ on autism, and secure better treatment for all of us, whatever our ‘functioning’ level, whatever our formal diagnosis or lack of it. In other words, it’s the pathway to freedom.

Alone, we flounder and fall. Alone, we will go on suffering, each in our own private hells, with no hope of remission, unless and until the world finds some way to exterminate us. If we don’t have community, we die, literally or in our spirits. If we don’t have community, we will sink without a trace, becoming lost, wandering souls without a ‘home’. Too many of us are still lost, still ‘out there in the wilderness’, still immersed in hating their autism, and themselves. A lot, I suspect, don’t even know the community exists, and I truly feel for them. (Who says we don’t have empathy?!)

So embrace the autism community, and the Autism Positivity it engenders. It saves lives.