We Need A TV Special

I don’t usually watch much in the way of ‘reality TV’, but this year some documentaries and one-off TV specials have caught my eye – all British (they seem to do this kind of thing best). It started with Big Fat Gypsy Weddings, and more recently there’s been the Seven Dwarves series, about a group of young dwarves living together while they’re acting in a Snow White Christmas pantomime. I also recently watched some of a doco on a young girl with progeria, the genetic condition that causes premature ageing.

What struck me about all of these, was the very ‘ordinariness’ of the people involved. Even if you don’t agree with all you see of them (the rigid sex-roles among gypsies and travellers, for example), they still come across both as individuals with their own unique personalities, and as ‘just regular people’. The gypsies and travellers want to settle down, form stable communities, preserve their traditions, and aim for better things for their kids. The girl with progeria wants hair she can flick in the wind. She dreams of living to be eighteen with the aid of a new drug, and old enough to drive a car – she’d love a Mini. The dwarves are just like any group of young people living together – they go out drinking and dancing, play practical jokes on each other, dream of marriage and kids, don’t do the housework – there’s even a gay dwarf. All the doco subjects have families and/or other people who love them, and who they love.

Yes, they experience prejudice or misunderstandings or patronisation. “They don’t like us cos we’re gypsies”, says one young boy. And you get the feeling he’s right. “Well, they’re not from round here, are they,” one of the locals wanting their eviction says, with a tight non-smile of (obvious even to me) contempt and loathing. The actress playing Snow White gushes about one of the dwarves “Oh, he’s so cute!” The dwarf in question is actually a miniature alpha male, if he was six feet tall, she wouldn’t be calling him ‘cute’ – or at least, not that kind of ‘cute’. And then there’s the “oh, look, aren’t they funny!” stares and laughter they get when out dancing or shopping. And so it goes on.

So you see the real difficulties they face. And yet, as I’ve said, the thing that comes through is their ‘ordinariness’, their humanness, how their needs and wants don’t really differ that much from the ‘normal’ people.

We need a TV special. We need a doco that shows us in all our eccentric glory, shows us living our lives, doing ‘normal’ things such as raising our kids, working at various jobs, putting the rubbish out, catching the bus, and so on. We need a TV special that shows the difficulties we face, but also the special things about being autistic, the good parts. We need a TV special that presents us in a non-patronising light, as individuals and as ‘just regular people’, albeit a little different. We need a TV special that shows us as human – not ‘tragedies’, not ‘monsters’, not ‘stolen children’, not freaks or violent or criminals or whatever stereotype people have in their heads. We need a TV special that allows us to be seen as human beings, with feelings and needs and dreams, with the capacity to love, to empathise, to reach out to others, in our own ways. We need a TV special that shows the full range of possibilities of being autistic, from the Nobel Prize-winners, through to those of us who will need full-time caring all our adult lives, and at least some of the many variations in-between. We need especially to have older autistics, who have managed to live some kind of independent life, seen and heard.

We don’t get that. Oh sure, there are occasional pieces on autism, on one current affairs show or another, but almost always they’re talking to the parents of autistic kids. The parents get interviewed. The parents get to tell about their lives. Occasionally, an adolescent or an older child is asked a sentence or two, or shown doing their favourite ‘obsessive activity’ (aka special interest), eg singing Disney songs or twirling pieces of rope. Adults (with a few notable exceptions, such as the Arie Smith-Voorkamp case) might as well not exist. Adults over the age of about thirty especially are invisible. Certainly there is no indication that we might be quietly living our lives, right under the noses of, and in amongst, the ‘normal’ people, doing ‘normal’ things, albeit in our own rather different ways.

We need a TV special. It’s long overdue in fact. You’ll forgive me however, if I’m just a tad cynical about it happening any time soon.

Merry festive season everyone. Hope it’s a good one. See you in the New Year.

Taking Control Of Our Lives

I haven’t written anything here for a while, having been busy with other projects. But I have been thinking. And one thing that’s been on my mind, is how so many of us spectrumites - and I definitely include myself in this, especially in my earlier years – have a tendency to drift somewhat passively through life, with the result that eventually, we find ourselves living lives we never expected or wanted. Lives which don’t ‘fit’ us and make us unhappy, or which are actually outright bad – abusive or dysfunctional relationships, crappy or no jobs, substandard housing conditions, etc, etc.

There are probably lots of reasons for this, not the least of which is that when we’re young, we simply don’t understand the world around us, and hence don’t grasp that we need to consciously take control of our lives. And even when we do realise it, we haven’t the slightest idea how to start. But start we must - and so I thought I’d list here some things I’ve learnt along the way, to help us do exactly that.

1) Overcome Our Fears. I’ve already written on this, so I won’t go into it in depth, suffice to say that if we can’t control our anxiety, fear or outright panic, we can’t gain control of anything else in our lives either.

2) Learn To Manage Our Emotions. Auties almost always seem to have difficulty with recognising, managing and expressing their emotions. But as with fear, only when we’ve recognised what we’re feeling, can we then learn how to best manage, express or cope with it. Learning to recognise physical clues is often the first step to doing this – that fluttering in the stomach that means fear, the tight jaw that signifies anger, the slap-in-the-face feeling of surprise, etc.

3) Learn Our Meltdown Triggers. This is a progression of 1) and 2) really. If we’re having meltdowns in public, there is no way our life feels under control. It can even lead to ‘bridge-burning’, where we just run away. And once a meltdown is started, it’s almost impossible to stop. But if we know what triggers it, and learn to recognise the feeling of impending meltdown, then we can either avoid those situations, ask for accommodations or changes, or just allow ourselves to quietly leave when it’s all getting too much.

4) Address Our Executive Dysfunction Issues. Gaining control of our day-to-day lives is an important step. There are many tools that can help us – daily routine plans or charts, visual diaries, diagrams, lists (I am the ‘List Queen’!), labelled peg boards, baskets and bins and other visual aids; also simplifying tasks and eliminating clutter and excess possessions so there are fewer to keep track of. Sometimes we may need help to establish these new methods, at least in the beginning. But it’s always worth trying, until you find the ones that suit you best.

5) Learn To Say No. Sometimes we agree to too much, in a futile effort to please people and be liked. But in doing so we can stress ourselves to breaking point, and fail to do even half of what we’ve agreed to. Learn your limits, and respect them, and you can then insist others do so too. And when we’re comfortable with saying ‘no’, then we can also discover when and what we want to say ‘yes’ to.

6) Stop Expecting Perfection. The search for perfection can both paralyse and isolate us – wanting to make the perfect decision, or make our creations perfect, or have other people be perfect. But that perfection doesn’t exist. We make mistakes, and it’s okay to forgive ourselves for them – because we aren’t perfect either. We can create something that has flaws, and it will still have value. Other people can have flaws too, and still be worth knowing. Accept imperfection, act, make a decision, and/or let something go, and move on.

7) Plan Ahead. If you need to do something or go somewhere new, then find out all you can ahead of time. Things like maps, some public building plans, bus and train timetables can often be found online, and online maps often have street cam views. Libraries, Citizens Advice Bureaus, Automobile Associations and bookstores are also good places to find useful resources. Keep persisting till you have all you need, and rehearse whatever you need to rehearse. So what if ‘nobody else’ does this – you do what YOU need to do.

8) Learn From Others. Most of what I have in terms of ‘social skills’ has been learnt through decades of observing others. As I’ve said elsewhere, I don’t recommend the ultimately exhausting level of people-watching I did, but it’s nonetheless true that watching others will often give us clues how to do things – whether it’s dealing with a snooty receptionist, deciding which knife and fork to use in a fancy restaurant, or asking for changes at work. It can also give us clues as to how to handle a particular job, what sort of career you might like to pursue, and even (sometimes) how to ‘do romantic stuff’. You probably won’t be able to do it exactly as others do, but you can gather ideas that can be adapted to suit your own needs and style.

9) Be Proactive. Do what you need to do, rather than wait for others to do it for you – chances are they never will. If, for instance, you don’t have enough info in order to do something you want or need to do, research or ask people questions until you do. (Don’t let fear of ‘looking stupid’ stop you – you’ll look even more stupid if you don’t know something when you’re meant to.) If someone hasn’t contacted you when arranged, don’t freeze into passivity and endless worrying - contact them, if only to ask (politely) for an explanation. If you’re the recipient of bullying or abuse, keep complaining to authority until it’s stopped, and/or you can remove yourself from the abusive person. If there’s anything about your life you don’t like, do something – or several somethings - to change it.

Above all, act, rather simply react. Take charge. Often we try to control the little things that don’t really matter – the papers on our desk, the time we eat dinner – and neglect the big issues that do – the state of our relationships, the lack of a proper career, the co-worker who’s bullying us. But no-one is going to come in and wave a magic wand that fixes everything. If we’re lucky, we will receive support and assistance, but whether we do or not, ultimately it’s up to us to take control of our lives.

And yes, I know that all of these things can require a lot of hard work and none are easy or quick, but the alternative – a life that feels crazy, overwhelming, chaotic, out of control and maybe even abusive - can be catastrophic. Our lives are often reduced to shambles. I know, because I’ve lived such a life. Only when I began to take charge of it, in the ways listed above, did it begin to improve. It is my most profound aspiration that all on the spectrum - young or old, ‘aspie’ or ‘HFA’, ‘severe’ or ‘mild’, verbal or non-verbal – can gain control over their lives, and stand proud, independent and self-respecting, able to accept help and support but also to refuse patronising ‘management’ by others, however well-meaning.

Because we are valuable human beings - not the ‘broken’ or ‘deficient’ substandard creatures that all too many obviously think we are - and worthy of taking charge of our lives in our own right.

Autistics and Fear

Many of us on the spectrum, especially at the ‘higher-functioning’ end, suffer life-long from ‘anxiety disorders’, spending a large part of our lives fretting about all manner of things – social, emotional, academic, work-related, etc, etc. I know that for a large part of my adult life, I probably met the criteria for some kind of ‘social anxiety disorder’, or ‘social avoidance disorder’ – the latter because I was trying to avoid the situations that sent my anxiety spiralling.

But let’s call this anxiety what it really is – FEAR. Fear of change, and new things that we’re not sure we can handle, so we refuse to try. Fear of making an error, or making a fool of oneself. Fear of ridicule, jeering, sneers, snubbing or bullying. Fear of tripping, either literally - our ‘clumsiness’ is often our curse - or figuratively, over other people’s unspoken expectations of us. Fear of our façade slipping, and people noticing our ‘weirdness’. Fear that other people will not want to know us, or be our friends. Fear of their anger or rejection. Often, just fear of other people, full stop. It is generally a constant background presence, nibbling away at our self-esteem. And sometimes this fear mutates into outright terror, which sees us frantically retreat into whatever refuge we can find. But at whatever level it manifests, it rules our lives. And ruins them, often.

Fear feeds our secret shame, and is fed by it. It lies behind our desperate attempts to construct that façade of the ‘imposter syndrome’. It arises from our pain, gives fuel to our anger, worsens our meltdowns, and propels us into ‘bridge-burning’. It keeps us ‘in hiding’ from the world, preventing us from trying new things that might benefit us, approaching people who might help us, asking the questions that we need to ask. It destroys our relationships, or prevents them even beginning. It can ruin friendships, whether budding or long-term. It’s a huge block to us having the lives we want, and deserve.

It’s my belief that the biggest thing we can do for ourselves, is to work on this fear. We may not ever be able to get rid of it entirely – I certainly haven’t – but we can reduce it to manageable levels, find ways to cope with what remains, and hopefully prevent those times when it spills over into sheer panic and terror. There are many ways to learn to handle our fears. I have found meditation works best for me. In the first few years after I began to meditate regularly, I went through a process of confronting my worst fears. I realised that what I was ultimately most afraid of was other people. It was a difficult time, yet ultimately rewarding, as by facing my fears, I began to dismantle their power over me. Even today, if I find my fears starting to ‘wind up’ again, putting more effort into my meditation is a key part of defusing them.

There are of course many other ways to confront and control our fears, and we each need to find what works best for us as individuals. Counselling and CBT, being more ‘up-front’ with people about our needs, lots of thorough preparation before facing new things, keeping a journal, writing poetry, painting or sculpting, dancing or listening to music, rigorous exercise, long solitary walks, being alone with nature, or – as a last resort, and if nothing else works – anti-anxiety medication. I have tried most of these at times (except the medication), and still use a lot of them regularly, along with meditation.

Yes, I know it’s hard, and I’m certainly not trying to minimise how difficult it’s likely to be. Our fears are HUGE, and often well-founded. But I feel it’s the one thing we can do, that’s within our control to change. We can’t change other people’s behaviour towards us – or very rarely – but we can change how we relate to the world, and change our lives for the better.

Aspergirls and Burning Bridges

Another excellent book I’ve just finished reading (courtesy of my local aspie group library) is ‘Aspergirls’, by Rudy Simone.[1] All the way through, I felt like she was talking about me and my life. One chapter in particular struck me though, and that was the one entitled ‘Burning Bridges’. Till I read this, I thought I was the only one who did this, but it seems it’s quite common, even more so with us females on the spectrum, she considers, than our male counterparts.

Basically, ‘burning bridges’ happens when something is not going right in our lives, and we simply don’t have the skills to do anything about it. So we do something drastic that severs that connection. It can be anything – ‘blowing up’ at a friend or suddenly dropping them, leaving a group or church or other association, having a serious meltdown at school, work or some public place that sees us expelled, fired, or banned from there; abruptly quitting a job or a relationship, moving house or even countries. The pressure has built up, we haven’t a clue how to fix things, so instead we self-sabotage, just ‘blow it up’ and walk away, our ‘bridges’ to that person or people or situation burning behind us. The trouble is, without help and support, we never do develop the skills we need to handle our problems (or not till quite late in life) and so we keep destroying our lives, over and over again.

This may seem a contradiction to the idea that autistics don’t like change, but there is one slight caveat to that. We don’t like change except when we initiate it. Abruptly destroying something, just throwing it away, can seem like the only control we can exert over a situation we don’t like. I know I have done most of the above over and over in my life, from childhood on, with the possible exception of public meltdowns (and there it would depend on how you define ‘public’ and ‘meltdown’), and moving country (which I definitely considered, but couldn’t do for practical reasons). I’ve destroyed or sabotaged or walked away from friendships, left relationships or destroyed chances I had of them, changed the places and people I socialised with or at, changed university majors several times, moved house many times, severed contact with people (often because I was too embarrassed by my behaviour to see them again), stopped going to shops or other places (again, because of embarrassment at my past behaviour), moved up and down the country, and generally started all over again, time and time again. It became intimately connected with my secret shame - I couldn't handle life well, and I knew it.

Sometimes, these changes weren’t under my control – a friend would move away, or a house I was renting would be sold. But mostly it was me and my own inner restlessness. I always thought the next place, the next person or group would solve all my problems, would be the one/s I’d fit in with at long last, would transform my life, or just transform me.

It never did of course. And eventually, like Rudy Simone, I was forced to stop running and face myself. And realise that I’ve undeniably hurt some people along the way, destroyed potential or actual friendships, and no doubt thoroughly got up many people’s noses. Looking back, I can see in some cases it was for the best that I did walk away from those people. But many another time, some help with learning how to recognise my feelings, express them in a constructive way, and to deal with conflict or unhelpful situations, would have changed my life considerably. This tendency to self-sabotage is a very real problem, and something we need help learning how NOT to do – and the younger we learn it, the better. This is where a mentor or advocate would be of huge help – they could teach us better ways to cope with the difficulties we have in life, whether they be sensory, emotional, social, academic, job-related, or indeed anything. Yes, I have more or less taught myself now, but it was hard. If someone had just taken me by the hand and said ‘there’s a better way’, how much easier my life would have been. How much less damage I would have done, to myself and others.

Perhaps things will be better for the next generation, perhaps they will get the support and guidance they need, whether it be from older auties, or non-autistic helpers and mentors. I certainly hope so.

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[1] Simone, Rudy. (2010) Aspergirls – Empowering Females with Asperger Syndrome. Jessica Kingsley Publishers, London and Philadelphia.

A Grump About Daylight Saving Time

Today is the first day of Daylight Saving for us here in New Zealand. It seems (she says grumpily) to start earlier every year, and end later. I always struggle with it for two reasons.

1) I struggle with understanding the concept of time moving ‘forward’. I see time as a linear thing, like a railway line, and to me the clock hands are moved ‘forward’ or ‘backward’ depending on where you are standing. If you’re at a railway station and the train is about to arrive there, it will seem to be coming towards you and hence going ‘forward’. But if it’s leaving the station, it will seem to be going ‘backwards’ away from you, even though it’s moving ‘forward’ according to the people in the next station. So if the time on a clock is like that, then whether or not a clock can be said to be ‘put forward’ depends on whether the relevant time you want to adjust it to has passed or not. So when they say ‘put your clocks forward’, I always get confused as to whether that means we adjust a clock from ten to eleven pm, or vice versa.

This time, someone in my aspie group gathering yesterday actually explained it to me quite simply – “Forward is clockwise, backwards is anti-clockwise.” And then someone else in a Facebook group put up a clock graphic that similarly explained it. However, I suspect these are only really useful for those of my generation who grew up with ‘proper’ clocks, not the younger generations more used to digital ones. So I’m wondering if there are others out there just as confused by this notion of time going ‘forwards’ and ‘backwards’.

2) My second problem with Daylight Savings is more profound, and harder to fix. Put bluntly, I am not a Morning Person. Since childhood, I’ve struggled with getting myself out of bed and on time for school, then work, then the demands of motherhood, study, or just appearing to face the world at a ‘normal’ time. People like me (and we’re not all on the spectrum by any means), when faced with someone all bright-eyed and bushy-tailed at five or six am, crack open one bleary eye and scowl, thinking “what the (expletive-deleted) are you being so (expletive-deleted) cheerful about, in the middle of the (expletive-deleted) night?!!” Never mind it may be dawn or near it, it still feels like the middle of the night to us. And getting us up and going at any decent hour of the morning (and let’s make this plain, anything before seven is indecent to us) is a major effort.

And then you want us to actually get up even earlier?!!? Are the Powers That Be totally  crazy?!!? Other people rave about having an ‘extra’ hour to do things in the evening. So what, we ask? We ‘Night Owls’ have never had any trouble staying up late, so all that means to us is that it’s still hot and fairly light when we’re trying to get to sleep, and we have enough trouble with that already. Alarm clocks jar us awake when it seems we’ve only just fallen asleep, the sun never seems to move from the sky, TV programs start when we’re not ready to watch them yet, and mealtimes roll around before we’re actually hungry.

So I loathe Daylight Saving – it doesn’t ‘save’ me anything – and I never really do manage to get my bio-rhythms to fit, or they’re finally just starting to, and then we have to change back again. It’s a perennial problem for me, and one I’ve never been able to really solve.

Does anyone else have this problem, or know what I mean? Or am I the only one totally grumpy and out of sorts with it?

The Role of Non-Autistic Allies

Recently I’ve been reading a very interesting book, called ‘Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum’[1]. Edited by Stephen Shore, it’s a collection of essays on advocacy by autistic writers like Stephen himself, Roger Meyer and Lianne Holliday Willey. It’s well worth a read, if you can get hold of it. However it was one essay in particular, entitled ‘Building Alliances: Community Identity and the Role of Allies in Autistic Self-Advocacy’, by Phil Schwarz, which really got me thinking. Most especially, one sentence towards the end, where he says –

           

“There is one thing that is really important about being an effective [non-autistic] ally… That is the essential and critical quality of a true ally that an ally does not serve as an effective ally by implementing his or her own agenda or ideas about what people on the spectrum need. Rather, a true ally implements the agenda of the people to whom they are an ally.” (his emphasis)

Let me repeat that – a true ally implements the agenda of the people to whom they are an ally. This means that any non-autistic individual, or autism group or organisation who tries to impose their agenda on us, is not a true ally. Any group or individual or organisation which purports to ‘represent’ or ‘care’ for us, but which does not listen to us or consult us, which (literally or metaphorically) pats us on the head and says (directly or indirectly) “we don’t need your input, we know what is best for you”, is not a true ally. Any autism organisation which will not allow us a voice or membership on their boards or committees or panels, or which lets us in but then tokenises or sidelines us, or in any other way renders us impotent or silent, is not our true ally. Any individual who smiles patronisingly while we speak and then goes on talking as if we hadn’t spoken at all, is not our true ally.

I’m sure we can all think of prime examples of all of these. The question then becomes, what do we do about it? The above essay gives some really good ideas about how to build relationships with those who are our true allies, and it’s well worth a read. My concern right now though is, what do we do about the organisations who have already proved they are not our true allies?

It seems to me there are several options. We can ignore them, and/or work with other organisations who are more amenable to the autistic point of view. We can try to ‘take them over’, and convert them into true allies. We can pressure them into changing, from both inside and outside. We can build our own organisations, which will work to ultimately change public opinion so that the worst of these organisations (the ones we are unlikely ever to win over) will become impotent and sidelined themselves.

Which path we choose, will depend on each autistic individual or group, their abilities and inclinations, the situation from country to country (because this is a world-wide phenomenon), and even region to region, or year to year. (Changes in leadership may render an organisation more approachable, for instance.) We all have the right to choose which path we think is most likely to work for us as individuals and as a group. I would ideally like to see all of these tactics taken by different autistics and/or autistic groups, as a multiple approach/attack is likely to succeed better than a single one. We can and must all work in our different ways, to achieve what is really a single aim – that of the implementation of OUR agenda, and the full realisation of our human rights. We still have a very, very long way to go before that is achieved, and whatever path we take, it has to lead to the same place in the end.

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[1] Stephen Shore (ed). (2004) Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum. Kansas, USA: Autism Asperger Publishing Co.

Conflict Resolution Skills for Autistics

It’s sometimes said of us on the spectrum that we are anti-social, that we cannot form communities or groups or associations. I think the formation of autism rights and/or social groups run by and for those on the spectrum, both online and face to face, proves this wrong.

However, we do have one particular problem that I believe needs addressing, and that is our lack of conflict resolution skills. Put simply, when things do go wrong between us, all too often we don’t know how to mend them. Instead things tend to spiral out of control very fast, with furious exchanges of insults, huge dramas, ‘trolling’ behaviour, and acrimonious splits. We end up reeling away hurt and confused and angry, or ‘bad-mouthing’ our opponents to others. Of course this sometimes happens between NTs too, but we seem particularly prone to having small misunderstandings or disagreements spiral quickly and devastatingly into huge ones.

The reasons for this are complex. One big cause is that we have often been the recipient of decades of hostility, put-downs, sneers and criticism from NTs – often ‘out of nowhere’, for reasons that we simply don’t understand. We have become over-sensitised and hyper-vigilant, and can sometimes assume insult where none is intended – or angst endlessly over whether it was or not. Add in our difficulty (even in our more ‘mature’ years) with reading others’ intent, problems with emotional regulation, the crippling effects of the ‘autistic shame’ I have written of before, a myriad of other stresses in our lives, and then put a group of us in a situation where one of us says something that inadvertently ‘strikes a match’ on our tender souls… and you have a recipe for a huge blow-up.

So how to solve this, or prevent already bad situations deteriorating further? What works for NTs often will not work for us, but I want to list a few points to remember that might help.

1) Autistics don’t do ‘subtexts’. If we say someone is fat, unemployed or has a big nose, we usually mean they are fat, unemployed or have a big nose. End of. NTs, however, tend to load apparently simple statements with multiple layers of ‘subtext’ or ‘hidden’ meanings. The problem is, having spent most of our life around NTs, we’ve frequently become hyper-sensitised to these subtexts, even if we’re not sure what they are. But coming from another autistic, chances are that there aren’t any. Remembering this might prevent at least some misunderstandings. Ask for clarification, before you assume ‘hidden’ insult.

2) The other person may just be having a bad day. Sometimes people just want to let off steam, and have a general grumble, and their comments aren’t directed at you at all. Or even if they are, it could just be you’ve hit on what’s a sore point for them. Everyone has their own issues and ongoing problems, which probably have nothing to do with you. Remembering this can stop your own issues and sore points being triggered.

3) Make ‘I’ statements, not ‘you’ statements. This is something I learnt in an NT communications skills group years ago. It basically means we stick to describing our own feelings, thoughts, etc, and not resort to insults or generalisations. So, for instance, we might say “when you said ------, I felt -------, -------- and --------” (the ‘I felt’ bit is very important), rather than lashing out with “how dare you, you --------, you are so -------” etc, etc. It isn’t about bottling things up - we communicate, we share our feelings and get them out, but without personal attacks on the other person. Hopefully, they will respond in kind. If not, at least you know you acted with dignity and integrity.

4) If necessary, agree to disagree. We don’t all have to have the same opinions or viewpoints on anything, not even autism. Despite our common experiences as autistics, we often have hugely differing personal stories. The world would be a very boring place if we were all the same! I have friends who have different political or spiritual beliefs to mine, are of a different generation, live in different countries, or come from different cultural backgrounds. It’s possible to believe different things, and still respect each other, like each other, and get along. Or to simply avoid those who you can’t get along with. It’s not the end of the world, either, if you find you simply don’t much like any given individual, but still have to put up with them in your group or political cause or social circle. (Irritating maybe, but not the end of the world!!)

4) Learn to let it go. Sometimes you’ll reach a point where it’s obvious that continuing discussion about a disagreement or upset is only making things worse, not better. Or you’ve talked it through with the person or people concerned (sometimes best done ‘behind the scenes’ through private messages or conversations), and either resolved it as best you can, or just agreed to disagree. At that point, it’s time to drop the subject and move on. Bitch about it to yourself or your closest friends in private if need be, but not in the open group, forum or Facebook page. We do like to perseverate, but sometimes enough is enough.

If we’re going to build a fully effective community and social movement, we need to learn to resolve our differences far better. Back in the day, I was involved in the feminist and anti-racism movements in New Zealand, and watched many groups implode or fall apart because they couldn’t handle disagreements. Sometimes this considerably harmed the movement’s ability to achieve its aims. I would hate to see us go the same way. So I’m hoping this little bit helps.

Loud Hands Project

I've just today found out that my submission for the Loud Hands Project, entitled 'Loud Hands, Loud Voices', has been accepted. I am going to be published alongside some of my 'heroes', people like Jim Sinclair, Amanda Forrest Vivian, etc. Wow! I'm really ecstatic!

Imposter Syndrome, and Getting A Diagnosis

An issue related to autistic shame is what I call ‘Imposter Syndrome’. I can best illustrate what I mean by this by talking about my own life. At a fairly young age, I realised I was ‘not normal’, not like the others around me. I perceived this as a lack of some kind, something others had but I didn’t, an inferiority on my part. I also realised it was something I needed to hide – because when my difference from others was revealed, in whatever way, a whole ton of negativity landed on me. So I definitely got the message, that this ‘not normal’ was not a good thing to be.

So I started to pretend. I watched others, I mimicked them, I modelled myself on them. I devoted a huge amount of my time and energies to learning what ‘normal’ behaviour was, and doing my best to present that to others. I built, in effect, a façade, a front or mask, of ‘normality’. This front was imperfect of course, a lot of negativity still came my way, and so I was forever revamping, reinforcing and refining it. I did this for years, decades even, of my life. I devoted time and energy to it that I now feel could have been better spent on enhancing my life in myriad other ways. And yes, I learnt a lot of what might be termed ‘social skills’ along the way – it was essential in fact, to the construction and maintenance of this front.

But there was a catch – the more polished my ‘mask’ or front became, the more l lived in fear. Fear of being ‘found out’. Fear of having someone ‘spot’ my secret abnormality, and exposing me with a pointed finger and a shout of “You! You’re not normal! What are you doing here amongst us regular people! Get out!!” Or words to that effect. Each occasion I ‘got away with it’, my fear that someday it would happen only increased all the more. I felt like an imposter, a ‘pretend normal person’, a sham, even a monster. It also had a ghastly feedback effect on my secret shame – the more I hid my true self, the more ashamed I felt of what I was hiding, and the more I tried to hide it, and hence the more my shame grew… And if any possibility of ‘exposure’ threatened, however faintly, I would redouble my efforts to hide it, and build that façade even stronger. While behind that front, my fear and shame gnawed away at me, corroding my self-esteem more with each year that passed.

And then I began the journey of realising I have Aspergers. This was a total surprise – I’d never thought that the source of my secret shame and façade had a name, an actual diagnosis. Even more, I had never thought there might be others like me. I thought I was the only one, ever. It was stunning, and very hard to take in at first, but also very welcome. I wasn’t ‘weird’ or ‘abnormal’ after all, I was an aspie!! With the aid of my new friends, the shame and the low self-esteem finally began to shift. I began, cautiously, to reveal that true self I’d hidden for so long.

However, over time a curious problem has developed. As I don’t yet (due to lack of money) have a formal diagnosis, that slip of paper or signed report or letter from some ‘expert’ saying that yes, I definitely do have this condition, my ‘imposter syndrome’ has done this strange 180-degree turn. Maybe, the little voice in the back of my head now whispers, maybe you’re just kidding yourself, because you want so much to fit in somewhere. Maybe you’re just ‘jumping on the latest bandwagon’, diagnosing yourself with the ‘condition de jour’, inventing ‘symptoms’ just so you can belong. Maybe, that voice says, it’s all in your head, and you aren’t really aspie/autistic after all, but just that weird, useless, deficient, sub-standard reject you always thought you were.

This despite having done every online test I can find (often more than once) and having had them all confirm I am well out of the NT range, not to mention several years of research that has confirmed yes, all my ‘quirks’ and ‘abnormalities’ can be explained by this label, the repeated and emphatic confirmations of my peers, and feeling accepted and understood for the first time in my life by those same peers. In spite of all that, still, still, there is this lingering doubt. I believe only that formal diagnosis will rid me of that doubt, this voice in my head like a worm nibbling at the foundations of my new and still precarious self-esteem.

And as if that’s not enough, there’s the irony that, having polished this NT act so well, sometimes when I have tried to tell people I have Aspergers, they refused to believe it. “I’ve seen Asperger kids, and you’re not at all like them!” I had to do a lot of explaining to some of my family, pointing out that I am forty years older than those kids and female anyway, and it manifests differently in females, before they slowly began to accept it. I know this has happened to many others on the spectrum also. It’s as if they see only the exterior, and not what it has cost to construct and maintain that, or what it still costs. They don’t seem to see how I force myself to endure, for example, sensory challenges that bring me close or even into overload; or understand how strange or new situations or people can frighten or overwhelm me. And so on, etc, etc, etc. I’m sure anyone who has ever experienced this ‘imposter syndrome’ will know exactly what I mean.

This is why I believe diagnosis is so important, for us adults on the spectrum. It’s not about being able to get access to services – for the most part, there aren’t any. It’s not about support – again, there mostly isn’t any, apart from what we give each other. It’s about knowing, for the first time in our lives, absolutely and without a doubt, what we are and where we belong. It’s about self-acceptance. It’s about killing that horrible wormy little voice of doubt within, and ridding ourselves, once and forever, of the crushing weight of the ghastly Imposter Syndrome. Being able, finally, to breathe free, walk with confidence, be our true selves, exactly as we are, without apology or concealment.

I live for the day that happens for me.

Going Beyond the Shame

A few days ago I wrote about autistic shame. But, I realised, it’s not enough simply to acknowledge that it exists. Where to from there?

As I said in my earlier post, I believe that becoming part of the autistic community – even if it’s only online – is essential to ridding ourselves of shame. When we first join it, no matter how tentatively, we start to read the stories of others on the spectrum, and compare notes - and to realize we are not the only ones who ever did this, felt that, had this or that reaction. We experience being accepted and understood for the first time. Eventually we start to think, hey these people are just like me, and yet they seem pretty okay people, in fact more than okay… Maybe I’m okay too…

Because it’s in this talking with others on the spectrum, that we start uncovering what exactly about our autism/aspergers make us feel most ashamed, and in doing so, to drain those deep wounds, and let them begin to heal. Those wounds may be caused by any number of things. Our executive dysfunction disorder, or our need for absolute order and rigid routine. Our sensory or emotional ‘over-reactions’. Or the social difficulties – our sense of isolation and rejection, how we can’t seem to make or keep friends, or find a decent/any partner. Our difficulties finding, keeping or simply enduring jobs. Or simply that feeling of being ‘not normal’, of being a square peg in a round-holed world, a reject, a lemon on the human production line. Or all of the above. And more, and more. And each time we felt that way, it carved a deeper notch in our souls.

But with the aid of our new contacts and friends, we start to see that what we thought for so long were signs of our hopeless inferiority are in fact simply part of our being autistic/aspergers. Then comes the final step - we begin to stand up for ourselves with the rest of the world. It isn’t necessary or even possible for all of us to be hot-shot political activists. But we can start to set limits with the people in our lives, to explain our reactions, and why we act the way we do, to be ‘self-advocates’, in effect. And when we do, things begin to shift for us. We begin to breathe easier, walk taller, stand prouder. And we can only do this too with the support of other aspies/auties, who form an essential ‘net’ to catch us when we fall, and help us back on our feet again. This is where we save each other’s sanity. Where my sanity was saved. Community makes the essential difference. Without it, we’re simply struggling on all alone - and we already know, all too well, how hard and impossible that can be.

Note, I am not making light of how difficult it can be to make changes in our selves, and our lives. But remember this – you are all incredibly brave just to have come this far. All of you have endured huge hurts, and survived. We continue to daily endure an unaccepting and often hostile world, one which is not set up for us, does not understand us, does not even like us very much, and a large part of which would prefer we didn’t exist. Which bombards us with negative messages, and relentlessly pressures us to be ‘normal’.

But you are not what the world thinks you are, or tells you that you are. You are not a failure or a reject, but an exceptional human being in your own right. You are worthy of being treated well, of treating yourself well, and demanding, expecting, that others will do the same. You are beautiful, and worthy of loving yourself, your true self, just as you are. Arohanui (much love), my friends.

Why We Autistics Hate Change

Another thing I’ve been thinking of a lot lately is how we on the spectrum don’t like change, and why this is so. I’ve heard or read lots of ‘experts’ talk about our ‘rigidity’ in regard to routines, routes, habits, etc. But no-one has ever seemed to ask why we are this way. A clue lies in the theory of ‘weak central coherence’, which, to me, explains why it’s so hard for us to generalise, or to transfer knowledge learnt in one situation to another. Every situation is different, unknown, chaotic, and hence frightening. Generalising and learning from experience are skills that can be learnt, in fact I have taught myself to do them. But they’re not things that come naturally, and must be consciously worked on.

But that’s the ‘experts’, looking at us from the outside in. What does it feel like from the inside out, from the autistic point of view? What exactly is happening, when an autistic child goes into meltdown over a change in routine, eg their mother driving to the library before the supermarket, rather than the reverse, as they usually do; or an autistic adult gets in a muck sweat of anxiety over having to do something new, eg drive to an unfamiliar town?

I can only say what it’s like for me, and as I’m an extremely visual person, I search for an image when trying to explain something. The most persistent image here is one that probably borrows heavily from science fiction movies, it has shades of Avatar, or maybe the Ewok planet from Star Wars.

Imagine a world where the people live in giant trees. The ground is far below, the bases of the trees lost in a swirling, misty darkness, with strange and terrifying creatures half-glimpsed in its depths. To fall from these trees is to fall seemingly forever, into that dangerous abyss. The inhabitants of this world have built platforms for themselves to live on, high in the trees, and move from one tree-home to another by means of rope bridges, some quite big and wide, others more narrow. They can’t of course see very far, but the routes are familiar and well-used, and the inhabitants have little to no anxiety about using them. Their only fear is of falling.

Now imagine another race comes into the area. They look the same as the original inhabitants, with this sole difference - they can fly. And when they want to go from one tree to another, they simply launch themselves off the platforms into space. Come on, the visitors call, let’s go this way! The original people, not unnaturally, balk at this. They know they will fall into the abyss if they try. They stick to their bridges and platforms, their ropes and branches. If the new people try to force them to jump off, they scream in terror, even though the new people are loud in their scorn and impatience. They know it’s impossible.

That’s how it feels to me. The world is a frightening jumble to us, and our familiar places, routes, etc (those platforms and bridges) that form our support, our ‘ground’, are only slowly created out of that chaos. We cannot just ‘walk into empty space’. We need to prepare, to in effect build a new ‘bridge’ to get across that gap. It can be done, but it takes time and (lots of) preparation. The abyss below is the dangerous unknown, and even now, with all the skills I’ve learnt, to think of doing something that might cause me to fall into it causes my heart to beat wildly, my guts to cramp, and my breath to come short. Fear, in other words, is what causes us to resist change. Our rigidity is the result of our fear. Try and force us into new things without that prep, and watch us fall apart, or even go into meltdown. Even if we do it to ourselves as adults, it’s still not a good place to be in. We’re falling into that abyss, and it’s terrifying. Give us ample preparation time however, and/or teach us how to find out what we need to know before going into something new, and it’s my belief you will witness us become much more flexible – because we’re more secure.

Autistic Shame

I’ve been thinking a lot lately about autistic shame. By ‘shame’, I mean the often life-long burden of feelings we experience as a result of failing to be ‘normal enough’ – that complex and overwhelming mix of embarrassment, self-hatred, fear, hurt, confusion, anxiety, anger and other feelings too convoluted to identify. Over time, and amidst repeated incidents of ‘failing to make the grade’ in one way or another, it slowly builds into a toxic brew that leads us to hide anything and everything about ourselves that might identify us as ‘different’, and invite negative reactions from others. Ultimately, it causes us to feel ashamed of our very selves, our very being, to feel we are somehow warped or defective, and/or ‘lesser than’ the ‘normal’ people around us. This is a private pain which we usually bear unnoticed and unvoiced, but which is hugely - immensely - damaging.

For this shame is toxic. It can kill. Suicides, drug and alcohol addictions, heart attacks, perhaps even cancer, can be the long-term result. It destroys our self-esteem, our relationships, and limits our choices in life – there are so many things we just don’t do, for fear of exposure. At the very least, it can mean a lifetime of crippling angst and floods of bitter, painful tears shed in private. We can spend years lurching unpredictably between wild anger at others, self-punishments of various kinds, and the deep fog of depression.

I suspect this is an especially potent issue for those of us who have been diagnosed late in life, and/or who are able to ‘pass for NT’, whether it’s through natural inclinations or personality, the dogged use of our intelligence, or by virtue of years of studying and slavishly imitating others. The pressure on us to be ‘normal’ has been so much more.

I have known this shame intimately. For decades, I went to great lengths to hide my ‘difference’. I would avoid doing or saying anything that I felt might reveal too much about my true thoughts, reactions and feelings, or single me as ‘unusual’ in any way. I especially knew I couldn’t afford to make errors. I was already nervously skating on too-thin-ice around the borders of this mysterious thing called ‘normal’. Others could make mistakes and laugh them off with a “silly me!” type comment, and get away with it. If I made a mistake, I would crash through that ice into a freezing ocean of exasperated reproaches, rolling of eyes, contempt and jeers, if not outright rejection and hostility. And of course, into more pain, increased self-hatred, and all the rest of it. So whenever I failed to hide my ‘difference’, I would try even harder to perfect my act of ‘normal’, or at least to conceal the times and ways I wasn’t.

By the time I was in my early fifties, I had reached a point where a lot of my ‘difference’ was hidden even from myself, squashed down, denied, or simply blocked. I had also withdrawn more and more from interactions with other people, and become somewhat of a recluse. I was deeply tired. For decades, I had tried to ‘deal with my issues’, but all the counsellors and New Age techniques and practitioners and self-help programs and books had done nothing to budge my stubbornly low self-esteem and chronic self-hatred. I had given up, thinking I was stuck with it, that I just wasn’t a particularly likeable person.

And then I began the process of discovering I had AS. Meeting others on the spectrum began to free me from shame - though even as little as two years ago, a friend wrote that she felt “you are still kinda hiding away some of your weirdness… it’s the stuff that you spend your whole life trying to cover up in shame.” (Private email, March 18, 2010). This started me thinking, and ever since then, issues have been slowly emerging into the light. For instance, I’ve been trying for ages to write my autobiography, but long-ago incidents which an NT would consider minor, are so bound around with the tentacles of shame, that I’m forced to stop writing while I untangle them. It’s still very much a work in progress! But I am determined to undo all those years – decades - of suppression and stifling of my true self, and to uncurl my spirit, mind and heart into true freedom.

I am also becoming more and more committed to helping other aspies and auties see that there is no reason to feel shame simply for being different. We have our difficulties and our trials, yes, by the truck-load, but we are not any less worthy of respect, or of allowing ourselves to simply be our true selves, than NTs are.

Furthermore, I firmly believe our burden of shame can only be completely shed by becoming part of the autistic community. Only by talking to others on the spectrum, comparing experiences, feelings, reactions, and having the “You do that too? I thought I was the only one!” factor come into play, realizing we’re not alone, that there are others like us out there, that we’re perfectly normal and okay as autistic individuals – only through this, can the shame begin to melt away. I have seen this happen, over and over again, as new auties/aspies come into the community. The letting go of old pain and self-hatred, and the beginning to ‘stand tall’ and experience autistic pride, is a beautiful thing to watch.

Yes, there are disagreements, even splits, and no, we’re not perfect – who is? – and there will be other aspies or auties we don’t like, can’t get along with, find boring, annoying, obnoxious, or even vaguely creepy. And yet. And yet. We are all we have, the only community you’ll likely ever find where we can be accepted, understood, as we truly are. Where no-one will insist on social skills classes before you can come to a meeting or join a forum. Where no-one gives a damn about eye contact, or expects you to know the ‘unspoken stuff’. Where that disastrous meeting with the boss or the strain of parties is understood almost without words. Where you are most likely to find someone with whom you can go on and on about trains or cars or history or castles, or whatever pushes your buttons, to your heart’s content. Where it’s okay to be yourself in all your autistic glory.

Let me repeat that last bit. Where it’s okay to be yourself in all your autistic glory. Autistics, whatever ‘shape’ they come in, are our ‘own kind’. Whether or not we go on to any kind of advocacy or political action around being autie/aspie, nonetheless, support and understanding of the kind only we can offer each other is almost certain to be the most important factor in our recovery from this crippling, damaging, horrible, autistic shame.

...And Keeping Our Talk Small

While I’m on the subject of talking, there’s one area where I feel we need to make our talk ‘smaller’, ie shorter.

I’m referring to those situations where someone shares some news with us, whether it be ‘negative’ news – “I think I’m getting a cold”, or “my car has broken down”, or ‘positive’ – “we’re going on holiday next week”. Often, our response is to start listing - in great detail and at interminable length - all the illnesses we’ve ever had, or all the problems we’ve ever had with any vehicle we’ve ever owned or even driven, or all the holidays we’ve ever been on and how good they were, etc, etc.

Now, I can understand why we do this (this ‘we’ is literal, I’ve been as guilty as anyone else of this!), and I suspect many of you also know too. We’re trying, in our own admittedly socially clumsy and awkward, roundabout way, to express our sympathy or even empathy, to in effect say “hey, I’ve been there too, I know what it’s like, I feel for you”. Or, “I’m happy for you.”

The trouble is, that’s not what the other person hears (especially if they’re NT), and not what they are thinking or feeling. In fact it’s far more likely they’re thinking “God, this person is so selfish, so self-centered, they do nothing but talk about themselves!” And then they go away disgruntled and put-off, maybe disliking us, and we lose another chance to make a connection, or even a friend.

So here’s my suggestion. Next time someone shares news of the above type (it doesn’t have to be these exact examples), instead of making a ten- or twenty-minute speech, simply say something like “I’m sorry to hear that”, or “that’s a bummer”, or (if it’s good news), “that sounds nice!” And then shut up.

That’s right, make one comment, and then just STOP. If they respond with more information, make one more comment, maybe a bit longer, or ask a question or two, and then wait for their response again. And so it goes on.

You don’t have to remember these exact words or phrases. It’s the idea that’s important, of keeping it short, sweet, and focussed on the other person, and which may help us get along a little better with the NTs we are invariably surrounded by, and incur, hopefully, a little less (bewildering, to us, because we don’t understand the reasons for it) hostility from them.

It’s worked for me, and I think it’s worth a try for others on the spectrum too. What do you reckon?

That Small Talk Does Mean Something After All

I  haven’t posted here for a while, as I’ve been either ill or busy with other things, including a great deal of family ‘social’ stuff. But in the midst of this social saturation, or perhaps because of it, I realised something. Or, rather, an understanding jelled that’s been forming for a while.

It’s about ‘small talk’ – you know, that seemingly idle chit-chat that NTs do so much of, the “hi, how are you, how’s your Bert’s lumbago, did you see that program on TV last nite, what do you think of that latest movie, I went to that fancy new restaurant, how did your trip go, we’ve been so busy lately,” kind of talk; on and on it goes, a seeming drivel of nothing much, simply filling the airwaves. Which we on the spectrum find either irritating, boring, or simply confusing and overwhelming. Because it seems so… meaningless, pointless, droning, superficial, and just plain stupid.

Well it isn’t meaningless, I’ve realised. Interwoven with a ton of non-verbal signals, ‘small talk’ sends a host of implicit ‘messages’, creating a two-way (or three-way, or more) flow of unspoken communications. At the very least, this unspoken communication says something like I see you, I acknowledge your presence. The better the participants know and/or like each other, the stronger their connections, the more of these ‘messages’ are sent - I respect you, I like you, I want to spend time with you, I find you interesting enough to care about your Bert’s lumbago or your trip, I’m willing to kowtow to your authority, and no doubt other transmissions I haven’t yet decoded. This is why ‘small talk’ gets called the ‘glue’ that binds people together socially. (There are of course often lots of negative messages sent too. These however are also, in their own way, part of the ‘glue’, as they let people know where they stand.)

Now of course, as our ability to read that non-verbal stuff ranges from poor to non-existent, we miss just about all of that, and hence can only hear the ‘top layer’ of the communications, which – on its own - seems, well, shallow and pointless. (I’m slightly embarrassed to admit it’s taken me till my fifties to realise all this, but hey, better late than never.)

If you doubt me, take the opportunity some day to watch any two NTs talking together. Ignore the actual words and simply observe their bodies. It’s like watching a dance. They will sway towards each other, then lean back. Gesture with their hands or arms, cock their heads to one side, perhaps shrug or twitch a shoulder, fidget in their chairs, shuffle their feet or cross their legs, tap their fingers on a surface or reach out and touch the other. If standing, they might move from one foot to the other, or turn away slightly and then back again. And then there’s things like tone of voice, and pitch, and facial expressions, all of which have meaning – to them. The words they use are simply a framework to hang all this on, a sort of vehicle to carry all the real messages. And NTs never think to tell us this, because not only are they usually unaware we don’t ‘see’ all that, but it functions mostly at the subconscious level anyway, so they’re only half-aware of it themselves.

Now I am not saying we need to learn how to do all that stuff, or try to decipher those unspoken messages. As I’ve said before, beyond basic politeness, I don’t feel it’s productive for us to waste a lot of time and energy on something we’re only ever going to be (at best) second-rate at anyway. If, however, we accept that it’s there, even if we can’t see it, understand it, or decipher it, I believe that it will eliminate or at least alleviate our distress and frustration (though perhaps not our boredom!) with the whole business. And I am all for anything that makes our already-difficult lives even a little easier.

The Issues of Older Autistics

Recently one of my favourite bloggers decided to stop writing her autism blog. Her reasons are many, but one of them is that she feels the autism rights movement is too youth-orientated, and that as an older autistic woman she is unable to identify with the issues that currently preoccupy the movement.

Her reference is to the US situation, and I don’t feel autistic advocates here in New Zealand are quite so focussed on ‘youth issues’, yet in the wider ‘autism community’, it certainly seems to be like that. Children used to be, and to a large extent still are, the focus of parent-led groups, government agencies, the education system and the media. But now as the supposed ‘tsunami’ of autistics are coming into adolescence and young adulthood, the focus is also on such issues as transitioning to high school, or from there to university or polytech, social and relationships skills, how to conduct oneself at interviews, flatting etiquette, budgeting, etc.

Now I don’t want anyone getting me wrong. I’m not saying that young people on the spectrum don’t have major issues that need dealing with. Quite the contrary. But the issues of older people on the spectrum are largely being overlooked and unaddressed, in fact not even acknowledged. The prevailing thought (if any thought is given to us at all) seems to be “well they’ve managed up till now, so they must be all right”. Not so.

Some time ago, another autism blogger of the ‘older’ generation was saying how a friend had referred to her as ‘the last of the wild autistics’. By this she meant those of us who grew up in an era when there wasn’t even the diagnosis out there to find. Who experienced decades of adult life lost in a kind of howling wilderness, being misunderstood, rejected, reviled, pushed into at least pretending ‘normality’, and generally dumped on for being ‘different’. Who agonised and stumbled and bumbled their way through that wilderness somehow, learning a lot along the way, but paying a dreadful cost for it. And now we find ourselves in a peculiar situation, one that may never be repeated. We’re too old for, and usually don’t need, the kind of help being offered to younger autistics. But that doesn’t mean we don’t have other problems. The following is an attempt at listing what I see as the issues facing older autistics.

1) Emotional ‘Baggage’. We may have gained at least some social skills and awareness, but we all carry scars from having learnt them the hard way. Decades of ill-treatment, for instance, and/or of not recognising that we are being ill-treated till it’s too late, have often left us so hyper-sensitive, we see insults and rejections even when they aren’t there – or rather, we’re so unsure whether they’re there or not, we angst over it endlessly – sometimes for years afterwards. Which adds layer upon layer of confusion, bewilderment, shame, embarrassment, anger, resentment, self-hatred and low self-esteem to the pain we already feel. Some of us have become semi-recluses because of this. Others just go through life with a ‘chip on the shoulder’, which others don’t understand, blaming the individual, when in fact it’s the decades of undiagnosed autism that is the problem.

2) Health Issues. Like NTs of our age group, we are ageing, becoming infirm, developing health issues. Unlike them, we struggle to communicate to doctors and nurses our special needs, how we are hyper- or hypo-sensitive to pain or touch, for instance. Or how we just can’t eat certain foods, no matter how many times we are told it’s essential for our health to have them, or that the tests say we ‘don’t have an allergy’. Or our trouble with auditory processing issues, which for at least some of us seem to worsen as we get older, or how our ‘co-morbids’ complicate our lives. And our health issues are often worse than people our age, due to the severe levels of stress (and poverty) we’ve experienced. And then there’s the thought of what will happen to us if we reach a point where we can’t look after ourselves anymore. My own personal nightmare is the thought of being forced into some old folk’s home – where I would have no room to paint or write, and no solitude to do it in, and would be expected to interact with others all day, every day. It makes me shudder even to write about it.

3) Employment Issues. Employment is a big issue for many older autistics. We may have learnt how to conduct ourselves at a job interview, but chances are our employment history is chaotic, spotty or almost non-existent, we may have trouble getting on with our bosses or co-workers (often due to that unresolved emotional baggage I mentioned above); or perhaps our educational history is as confused or lacking as our work history. We may feel we could do a particular job, but don’t have the ‘right’ qualifications, and it’s too late to spend years more getting them. We are often poor, marginalised, un- or under-employed, and lack hope of ever getting out of that situation. Or we’re employed, but have struggled through years of feeling lost, and overwhelmed by the social demands of the job. This latter has lead to early ‘retirement’ for some, and/or major health issues.

4) Family Issues. Some older autistics have good connections to their family (I count myself as one of the lucky ones, in this respect). Many, however, are alienated from their families, who didn’t understand that their behaviour was due to undiagnosed autism, and not to the individual simply being a jerk, an arrogant bitch, or a deliberate pain in the posterior. Or family members are hostile, hypercritical, judgemental, and unsupportive. The result for an ageing autistic is that they are often left to deal with life on their own. When you add in that this group is likely to have few or no friends, to possibly not be part of any social network like a church, to be poor, and to have health issues related to their decades of undiagnosed autism, the prognosis for a comfortable ‘senior citizen’ phase of their life looks very poor indeed. These are the sort of people who stand a high risk of not being found till several months after they die, alone, in their tiny, substandard living accommodations.

5) Relationship Issues. The same things that happen with families of origin, are likely to happen with marriages and/or children. Our history of adult relationships can be messy, confused, patchy, non-existent, and/or we’ve left a trail of angry, confused people behind us. Some have been, or still are, victims of abuse in those relationships. Some are even alienated from, or have only distant relationships with, their own children and/or grandchildren. Some of us have given up on the whole business of sexual relationships or marriage, it’s just too much hard work. Which is our right, but once again leaves us alone, and without support, as we age and become more infirm.

This is only a rudimentary attempt at defining what older autistics need, and not intended to be the ‘final word’ on the subject. I hope that others will develop and continue the discussion. What I do know is that we don’t need – or want - our hands held, or patted “there, there dear”, and we’re past the stage of needing social skills classes or ‘transitions’. What we want is what anyone else in special circumstances wants – recognition, understanding, respect, support and practical assistance. The exact shape of the latter has yet to be defined, and will probably differ from one older autistic to another anyway. What is important however, is that we should not be disregarded, just because it looks as though we are ‘managing’.

We Are The Last Group That Will Be Liberated

We are the last group that will be liberated. The last ones that will have their oppression lifted, their plight seen for the travesty of justice it is, their status as fully equal human beings asserted. The last two centuries have seen just about every other group or minority move out from ‘sub-human’ status and into being redefined as within the range of ‘normal’ or ‘acceptable’. Now it must be our turn.

Once upon a time, the ‘norm’ was defined, at least in the Western world, as white, male, middle-class, heterosexual and of course sane, able-bodied and of normal intelligence. The attributes of this group were the standard against which all others were measured, the yardstick ‘everyone’ should ‘naturally’ aspire to, the best that any human could be. And if you weren’t all of these, you were somehow inferior. To a large degree this wasn’t even discussed, but simply assumed. It was the ideal pattern, the superior state, and that was that. In English-speaking countries, you could add ‘Protestant, of Northern European, preferably English, ancestry’ to that list, or, as the Americans call it, a ‘WASP’.

And then the challenges started. Women got uppity, demanding the vote and a decent education and all the rest. The lower classes formed unions and agitated for change and ‘one man, one vote’. Even ‘coloured’ people, once the shackles of slavery had been removed, began to slowly organise and strive for something better for themselves. And as the twentieth century moved on, the agitation only increased. Socialists came to power in some countries, or formed Labour Parties and got into Parliament in others. Formerly subject peoples threw off their colonial masters, and began to govern themselves. Those ‘coloured’ people started calling themselves Black, or African-American, and refused to sit in the back of the bus and accept second-class citizenship anymore. Women soon followed their example, for a second round of ‘uppity’ behaviour, and in the late sixties gays and lesbians began their own revolution.

The result is that over the last thirty to forty years, there has been a change in how such groups are regarded, with a consequent change to the common idea of the human ‘norm’. Publicly ‘out’ gay figures, mothers working full-time, women and dark-skinned people in prominent and powerful positions - even President of the US - are no longer seen as unusual or something to automatically reject even the idea of. In New Zealand we have gay civil unions, and have had two female Prime Ministers, one female Governor-General and two who are of non-white ancestry. And the sky hasn’t fallen yet.

And along with all this, there have been changes for other formerly powerless groups. Patients now have the right to be consulted and to choose their health care, where once they were simply passive recipients of ‘treatment’ from the Doctor Gods On High. Mental health patients have undergone a similar empowerment. The blind, the deaf and the intellectually handicapped, once powerless and marginalised into institutions, now enjoy a much better position and quality of life. The physically handicapped have also acquired ‘rights’, to accommodations such as disabled toilets and to being seen as fully human, even if in practise they are sometimes still treated as ‘not all there’. Nonetheless, it’s seen as ‘not nice’ to refer to ‘crips’, to laugh at someone because they can’t walk properly, or to talk down to/ignore someone just because they’re in a wheelchair – any more than it’s socially acceptable in most circles to call non-whites ‘niggers’, ‘chinks’ or ‘wops’, or to tell women they can’t do a particular job just because they’re female, or to say that lower-class or Black American accents are not acceptable on mainstream television.

That’s not to say that racism, sexism, homophobia, classism or even ableism, have all been eliminated. Far from it. But my point is that the idea of what constitutes the ‘norm’ has changed. All these groups are now seen as having fully human status, as being worthy of being treated well, even if they sometimes aren’t.

We are not.

It’s still okay for people to say in our hearing that we are ‘mistakes’ that should never have been born, or ‘thieves’ that have stolen away people’s ‘real’ children, or tragedies and burdens that have destroyed our parents’ lives.

It’s still okay – even commended – for people to say in our hearing that they ‘hate’ the autism that is the very core of who we are, without regard to the psychological damage that might do us.

It’s still okay for media to portray us almost entirely in a negative, patronising or pitying light, and to report unopposed the views of those who say that murdering us is ‘understandable’ and a ‘mercy killing’.

It’s still okay to force us into ‘treatments’, therapies or ‘restraints’ that can do us real harm, while denying us the support that actually could help us.

It’s still okay to refer to us as ‘retards’, ‘losers’, ‘geeks’, ‘nerds’ or ‘ass-burgers’.

it’s still okay to exclude us, reject us, laugh and jeer at us, bully us even as adults, deny us employment, and generally dis-empower us.

It’s still okay to demand that we suppress and deny our true selves and natural behaviours such as stims, even if they aren’t hurting ourselves or anyone else.

And it’s still okay to take it as a given that our ways of being are automatically inferior to those of neurotypical ways, and any difference between us is a ‘defect’ on our part.

Most of all, it’s still okay to see us as ‘not fully human’, as somehow lesser than the ‘normal’ people, as Not Good Enough to have rights just like any other human.

Because we are not seen as fully human, and we have no rights.

I’m not wanting to minimise any group’s struggle here, but it’s nonetheless true that even the blind, deaf, intellectually and physically handicapped, and those with mental health issues, are seen as more ‘normal’ than us. Unless they are also on the spectrum, there’s a shared outlook, a body of shared assumptions and attitudes, a natural facility with all the things we so struggle with, that they all have in common.

We don’t share it.

We are the ultimate ‘other’. The furthest ‘out there’ group, the last frontier of what it means to be human. Having spent time in the feminist and anti-racism movements of the eighties,  I believe our struggle will prove to be the hardest, the longest, the loneliest and the most complex of all.

None of which means we shouldn’t try – rather, it means it becomes all the more imperative, all the more needed, all the more necessary, that we do. And when we consider all the above treatments we are on the receiving end of, and the damage they are doing, all the more urgent. We have to do it. We have no choice. Because we are human, and it’s time to step forth and declare it, and take our place in the world.