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.