Tuesday, 26 July 2011

Just because... a bit of quirkiness runs in the family!

Just thought I'd put these up... Every time my daughter comes down to see me, she puts a few of her 'creatures' on my whiteboards. Just as a way of leaving a bit of herself with me, I suppose... Creativity runs in the family, as does quirkiness! It's a bit of fun, and I always regret it when space considerations mean I have to wipe them off!

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Monday, 25 July 2011

'Cure' vs 'Healing'

An interesting book I’ve been reading lately is The Horse Boy, by Rupert Isaacson[1]. It’s written by the father of an autistic child, but it’s a bit different from the usual run of such books. He rejects the usual path of trying to ‘fix’ his child through the rigidities of ABA etc, and instead takes him horse-riding, and to shamanistic healers in Mongolia. It’s intriguing in its own right, but one particular thing he says, more than once, really resonates with me.

He talks about the difference between ‘curing’ his son, and ‘healing’ him. Aren’t they the same, I can hear someone saying. Perhaps he says it best….

            “Rowan is still autistic - his essence, his many talents, are all tied up with it. He has been healed of the terrible dysfunctions that afflicted him – his physical and emotional incontinence, his neurological firestorms, his anxiety and hyperactivity. But he has not been cured. Nor would I want him to be. To “cure” him, in terms of trying to tear the autism out, now seems to me completely wrong. Why can’t he exist between the worlds, with a foot in both, as many neurotypical people do? Think of immigrants to the United States, living with one foot in their home language and culture, the other in the West, walking in two worlds. It is a rich place to be.” (pgs 348-349)

My feeling is, many people who search for what they call a ‘cure’ (or ‘recovery’) for their autistic child, might actually be wanting ‘healing’ instead. Healing for the worst, most dysfunctional aspects of the condition, so that the child can function in the world, yet still be clearly autistic; rather than, as he puts it, trying to ‘tear the autism out’. That always seems to me a deep down denial not only of a child’s autism, but of how intrinsic it is to the autistic individual.

I believe it’s a distinction worth remembering. I’d be interested to know what others think.

[1] Isaacson, Rupert. The Horse Boy – a father’s quest to heal his son. Melbourne, Australia: The Text Publishing Co, 2009.

Saturday, 16 July 2011

Power and Responsibility

When I was a child, my father had a lot of little sayings. One of them was “power corrupts, and absolute power corrupts absolutely.” We all know examples of how that works, from Mugabe’s thugs to Abu Ghraib, from Clinton’s “I did not have sex with that woman” to the shenanigans at Rupert Murdoch’s News of the World. Further back in history, there was Hitler and Idi Amin and Watergate. It’s gotten so that we almost expect corruption of some sort in large companies and high places. The more power that’s on offer, the more likely it is that it will go to someone’s head – or simply attract the potentially corrupt (and violent).

My father also had another little saying that was the flip side of the above – “responsibility ennobles, and absolute responsibility ennobles absolutely”. The problem with that in today’s world is that while many seek power, very few seem willing to take responsibility. Whenever the excrement hits the fan, whoever has that power, they are never somehow to blame, at least in their own eyes. Ass-covering has become almost automatic. Many years ago, when the Cave Creek disaster happened, I remember a very apt cartoon, which had various ministers, reps of government departments, etc, etc, all standing around in a circle pointing the finger at the next person in line and chanting in chorus “It’s his fault!” If anyone does take the blame, it’s usually some low-ranked subordinate offered up as a sacrificial lamb, or, in a few rare instances, some figurehead executive falls on their sword – “my department, my responsibility” sort of thing (this seems to be happening for Murdoch executives at the moment). Meanwhile, in the middle ranks, things go on as usual, the ‘culture’ of the place unchanged, or at most simply concealed better.

Most recently, I’ve seen this in action in our police force. Now I’m not slagging off the police in general. I’ve even met some nice ones. But there is a culture, or sub-culture if you like, within the force, of ‘bully boys’. As I’ve said in a previous post, I saw this ‘back in the day’, but had thought it was a thing of the past. Even such things as the Louise Nicholas case, I thought were simply hangovers from that past. But the Arie Smith-Voorkamp case has proved me wrong. Again, I am NOT saying all police are like this. But I do think that those who are, are being protected by their colleagues and superiors. NZ police, like many police forces around the world, tend to have a kind of ‘siege mentality’, where because of constant dealing with criminals, they often come to assume just about everybody who’s not a cop is guilty of something. They come to believe all their actions justified, and see themselves as pretty much ‘alone against the world’, and any criticism of them is ‘pandering to the crims’. They seem to believe if they admit to wrong-doing on the part of one of their own, it will not just tarnish their image, but lessen their ability to ‘catch the bad guys’. Somehow, they believe for that to happen, they must appear perfect. Cue ass-covering, denial of ‘aggro’ in courts and media, refusal to back down, etc, etc. The modern philosophy of refusal to take responsibility only feeds into this.

Let me digress for a minute. My daughter has been surrounded by unconditional love from the moment she was born. My only child, she is the ‘apple of my eye’. She also has strong, close bonds with extended family members, especially her grandmother. But if she when young had ever committed some serious wrong-doing – eg if she had ever shoplifted – I would, firstly, have ripped her a new one, and secondly, hauled her back to the shop by the scruff of her neck and made her return the goods and apologise to the shopkeeper or manager – publicly. Her grandmother would have given her an “I’m-so-disappointed-in-you” talk, and other family members would also have strongly voiced their disapproval. And she knew it too. Did she ever steal anything? Not flaming likely!!! In fact on one occasion when she was about ten or eleven, when a (so-called) friend tried to persuade her to go to a local shop and pinch stuff, she hotly refused, and stomped off home. The other girl went to the shop – and promptly got caught stealing, my daughter smugly informed me the next day.

The point I’m trying to make is that even if there are strong bonds (as police, army units, etc tend to develop), it doesn’t necessarily mean you have to approve, publicly or privately, of all each others’ actions. Nor is necessarily destructive to those bonds if one of the group is ‘hauled across the coals’ for those actions. If you think, well, that’s family, a police force is somewhat different, I suggest you look across the Tasman, to the New South Wales Police. This force was plagued by rampant corruption for decades. It was only through the stubborn efforts of dedicated people both within and outside the force that this was finally exposed and (hopefully, mostly) put an end to. Did this, at the time, damage the image of the force in the eyes of the Australian public? Undoubtedly. Does this same public now has greater confidence that their police are far less likely to be corrupt? I haven’t spoken to any Australians on the subject, but I’d be willing to bet on it.

So maybe I’m just a na├»ve aspie. But surely, if anyone refuses to take responsibility for their actions, insists they “didn’t do anything wrong”, lies about it, evades the truth, or stubbornly insists on the wrong-doing of others to divert attention away from their own, the more their image is likely to go down in other people’s eyes. If the police would own up, however, to occasionally ‘going over the top’ out of misplaced zealousness or righteous anger, or to a ‘misjudgement’ in how they prosecute a case, yes, a short-term dip in their image will almost certainly happen. But in the long run – after all the media hype died down - that image would surely be enhanced. “Well, hey, they’ve done wrong sometimes, but they’re man enough to own up to it, and try to put things right.” That sort of thing. Further evasion of responsibility etc, though, can only damage their image in the eyes of all the public, not just those with Aspergers.

But I admit, I’m not holding my breath it’s going to happen any time soon. This attitude seems entrenched in the police, and there are likely to be more Aries, not necessarily with Aspergers, but undoubtedly from some vulnerable group or another. I’d be willing to bet on that too.

Monday, 11 July 2011

Two Lightbulbs, an Aspie and The Police

A case that has been in the news here in New Zealand recently is that of a young man with Aspergers, whose name is Cornelius Arie Smith-Voorkamp, known to his friends as Arie. Arie’s ‘special interest’ is all things electrical, especially light fittings and switches, the older the better. He has been collecting them for years. He often removes them from old, abandoned houses, shops, etc, usually asking the permission of the owners first. However on one occasion he did not, and what happened next is what has been in the news.

Arie for some time had been aware of an abandoned building, formerly a shop, near his home in Christchurch, NZ, which had been badly damaged during the earthquake of September 2010. He could see some light switches that looked interesting, even compelling, to him. One evening he decided to go in to the half-wrecked building and get them. His partner, Michael, was with him at the time, and tried to persuade him not to go in, but Arie was in the grip of an Aspie obsession, and nothing could stop him.

When he got into the building, however, he saw that the switch was not of a sort he wanted, so looked around, and saw a couple of light bulbs he found interesting instead. He thought they would look good on his mantelpiece. So he started to undo them. Michael had now followed him in, still trying to get him to come out of the dangerous building. At this point, things suddenly and abruptly went wrong. The police came by, saw the light of Arie’s torch, and came rushing in.

Now I should add here that this was just a few days after the Big Christchurch Quake of February 22nd 2011, in which 181 people were killed, and most of the Christchurch CBD and numerous other buildings were wrecked. Looters had already been preying on the vulnerable, parts of the city were under curfew and military-style lockdown, and emotions were running high. So it’s natural the cops should be on high alert. It was Arie’s misfortune, or bad timing, that it should all occur when he was in the grip of his obsession.

But this does not excuse what happened next – the young men were seized, thrown to the ground and handcuffed, with being given a chance to explain what they were doing there. Arie panicked, probably on the verge of meltdown, as he didn’t understand what was going on, and why the police – sworn to uphold the law and help people – were treating him like this. He was yelling that the handcuffs were tight enough already, as they were pulling them even tighter. A burly policeman (Arie is of slight build) had his knee on Arie’s back. Michael then saw one of the cops elbow Arie heavily in the face. Arie himself remembers a ‘blow to the back of his head’, after which he blacked out temporarily. His stutter (which comes on him in stress) was mocked and jeered at, and his attempts to tell them he has Aspergers were ignored.

Arie and Michael were arrested, hauled up before a judge the next day, and accused of burglary. The case made the news and Arie’s bruised and battered face was plastered all over the national media as ‘the face of looting’. He was in jail for over a week, an experience he now looks back on with fear and horror. So far, the actions of the police (barring the assault and mocking of course) might (JUST) be excused as excitability, given the other, and far more serious, looting going on at the time.

But it didn’t end there. Over the next few months, Arie has been back and forth from court, as the police have proceeded to ‘throw the book at him’. Despite now knowing full well about his Aspergers, and despite the repeated recommendations of several judges to the police to consider a diversion scheme for Arie instead of prosecution (an option for minor offenses in NZ), they have repeatedly refused any chance to defuse the whole matter. The case must now go to a defended trial, costing the taxpayers far more of course. They have also strenuously denied the assault, despite his obvious injuries seen by all on national television and in newspapers, claiming that as Arie hasn’t filed a complaint, “no assault can have taken place”. Arie has his reasons for not filing a complaint, not the least of which is his new fear of the police, and they are valid. It’s entirely possible that such a complaint would be an extremely stressful waste of time anyway, given that the police tend to ‘close ranks’ and protect their own, even when they have obviously done wrong. The police have also denied that army personnel were with them at the time, which is not supported by the statements of Arie and Michael. [16th July update - I've noticed the latest police statement says that no army personnel were 'involved in the apprehension of' Arie and Michael. A nice bit of official hair-splitting, which gives them wriggle-room to say later, well, (cough, cough) they were there but they didn't actually arrest anyone... Also, it's worth noting that Michael was also assaulted, and charged, and will be coming up in court the same day as Arie, the 28th July.]
[Further update - the case has been postponed till later in August, as a freak snowstorm meant Arie couldn't get to a court-ordered psych appointment. So still not resolved, and still hoping sense will prevail in the end.]

Oh, and the objects he ‘burgled’? Two light bulbs, worth about $2 at the local supermarket. The owners of the building, a Mr and Mrs Matsis, were not contacted by police until quite late in this saga, after a team of reporters for TV1’s Sunday program tracked them down and told them what was going on. They were horrified, and made it plain they did not want to press charges, being more concerned about the safety of the young men going into the building than a pair of cheap light bulbs. Arie, with a team from Sunday, went to their house and apologised to them for entering their property and taking the bulbs. The apology was accepted, and it was a very amicable meeting. A short documentary on the whole case with Arie and Michael’s testimony appeared on TV1’s Sunday program this past Sunday, the 10th of July. The reaction of the police? When they heard about it, they first approached Mr and Mrs Matsis and ‘persuaded’ them to ‘let the courts handle it’. (The Matsis’ however, later told the Sunday team they still hope for Arie to be acquitted.) The next step was that the police told the Sunday team that they are now under criminal investigation also!!! (Read this story - http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10737782 )

So what are we to make of all this? It seems the police are determined to ‘make an example’ of Arie. There were far more serious cases of looting that could have been used for this, including those who stole generators being used by emergency services, or those who broke into homes or buildings left temporarily empty, and took valuables and money. So why pick on Arie especially? There are grounds for believing that the police might have a very negative attitude to anyone with Aspergers, regarding them as a ‘nuisance’; and that Police HQ in Wellington (our capital) might be insisting on a ‘hard line’ being taken with anyone with Aspergers. Now, I am not saying that all police feel like this. I am not even saying that all police are aggressive and liable to beat up offenders. But it does seem they cannot admit they made a simple mistake, or that they were over-eager to ‘prove themselves’ and ‘catch those bastard looters’. No apology has been offered, and it doesn’t look like it ever will be. The attitude of the relevant government minister doesn’t seem too good either – she was reported as saying she hoped he would be ‘locked up for a long time – with a cellmate’. The implications of that are chilling.

Another serious implication of this case is the Sunday team being investigated. This should also send a chill down the spine of anyone who believes in a free press as an essential part of a truly democratic society. So why are the police attempting to silence this investigation? Why are they refusing to admit they got it wrong? Are they that determined to deny the egg on their faces, that they must force through the courts a serious conviction charge on a young man whose only previous involvement with the law was a reprimand for not wearing a helmet when he was biking (a legal requirement in NZ)? Can they not just be ‘man enough’ to admit they made a mistake, and substitute a lesser charge instead? To say “Sorry guys, we got it wrong, this isn’t a Big Bad Looting Criminal after all”? It seems not.

I must admit here, my own attitudes towards the police were formed back in the 80s, when I took part in many anti-racism protests. I witnessed cops commit appalling violence towards protestors, and blatantly lie about it in court. I heard their jeering comments, and saw their obvious prejudices towards blacks, women and gays. It shocked me so much that for months after the Springbok Tour protests back in 1981, if I saw a policeman in the street I would start to shake, and want to vomit. I know the fear Arie now feels. But that was nearly 30 years ago. I thought that with a younger, better trained and more aware generation of cops, that the nasty ‘police culture’ of that time was history. But it seems only the objects of their derision and prejudice have changed, not the attitudes themselves. This is a sad indictment on our police force, the government attitudes and policies behind them, and the behaviour of those individual police and army personnel who were there. I am disappointed in my own country, and that’s a heavy thing to have to say. The only thing to moderate that disappointment is the numbers who have come out in support of Arie and Michael, which is immensely heart-warming to see.

This case is not over yet. Watch this space. Better yet, watch the program, and judge for yourself. http://tvnz.co.nz/sunday/s2011-e19-video-4292608
The Sunday program also has a Facebook page, if you want to make comments, at https://www.facebook.com/home.php#!/SundayTVNZ

Tuesday, 5 July 2011

A different definition of autism!

Oh, and while reading Rachel's blog, i came across this, it's her re-write of the DSM-IV criteria for autism. Well worth a look! It's both fascinating and amusing too, in a way, to see the usual stuff ''turned on its head'. If only the 'professionals' understood what she says. Sigh. If only.
It's at http://www.journeyswithautism.com/2009/12/20/if-i-could-rewrite-the-dsm-iv-criteria-for-autism/

A New Website on Autism and Empathy

Hey people, Rachel Cohen-Rottenburg, one of my favourite autistic bloggers, has started a new website on autism and empathy, because she feels so strongly the myth that we don't have any is harming us. If you agree, please give it a visit.
It's at http://www.journeyswithautism.com/autism-and-empathy-website/

Monday, 4 July 2011

Do You Ever Feel That the World is an Alien Place?

I mean, do you ever feel like the values it operates by, the rules it sets up, are so strange that they must have been thought up by aliens? Government regulations, for instance, that would do credit to Darth Vader. (“You Will Obey…”) Political policies towards other countries that resemble something the Daleks might have created. (“Exterminate – exterminate – exterminate…”) ‘Government-speak’ that serves to mute and dull people’s perceptions of what’s really going on. ‘Collateral damage’, for dead civilians. ‘Budget adjustments’, for slashing the incomes of the most vulnerable and poor. “Putting people in work” programs, that do nothing of the kind, but make a government look good. Refusal to join international efforts to improve the environment, because “it costs too much”. And more, and more.

And all of it lacking any kind of compassion, perception of others’ viewpoints, serious thought about the future consequences, or even simple common sense. It’s all about presenting an image, impressing others, fooling others, getting votes, staying in power, protecting your market share or your profit line, pleasing shareholders or the board or your boss or the voters or the public in general. Pleasing, placating, ‘massaging’ perceptions, thinking of short term profits often at the expense of more worthy long term goals - it’s all crazy, to the eyes of this aspie.

The last time I remember feeling this really strongly was a couple of years ago, when I applied to Work and Income (aka Social Welfare) for assistance to resume my long-neglected degree. I don’t know what it’s like in other countries, but in New Zealand, we have a training allowance that some beneficiaries can get to cover study costs. Most of my tertiary education has been done with the help of this allowance, including all of the papers for that unfinished degree. Well, it looks like it will stay unfinished, short of a miracle or a Lotto win, because, I was informed, the Powers That Be in their dubious wisdom have decided that this allowance can now only be used to do short-term, vocationally orientated courses up to what in NZ is known as ‘Level Three’ qualifications. This effectively cuts out all university papers, as they are Level Four or above.

Well, I didn’t have to think about it too long, before I realized that it meant people could only be trained for low-level, low-paid jobs. When I said as much to the Work and Income person, she admitted that, but said that the policy now was to get people off benefits and into any job, no matter what it was or how well it was paid. (She didn’t say that she agreed with it, mind, and I got the impression that secretly she might not have, though she did say that it was because people in the past had “spent years doing qualifications”. I thought well yeah, duh, you tend to if you’re doing a degree…)

By the time I got back to the car, I was nearly in tears. Being refused what I’d been expecting was bad enough, but I was also reeling from the sheer stupidity of the grounds for it. It didn’t take much thought to realise that those low-level, low-paid jobs The Powers That Be are so keen for us beneficiaries to do, are, firstly, the kind of jobs that are often short-term in nature, either because they’re the first to be cut in hard times, or because people leave out of frustration, boredom, childcare problems, lack of a decent wage or opportunities for further training or promotion, or because the stresses of the job have made them ill. Thus, people will tend to cycle in and then out of these jobs, and back onto a benefit. Whereas if someone can be helped to get higher qualifications, then they can get into better jobs and professions - ones that see them lifted out of the poverty cycle, and hugely less likely to end up back in that W & I office. So for lack of a longer term viewpoint, people are pretty much doomed to stay poor, and probably soon back on the Government’s books. Great thinking, Powers That Be.

And secondly, these jobs are actually getting fewer and fewer – the unskilled/semi-skilled/low wage labour market has been shrinking for decades, in the Western world at least, due to mechanisation, computerisation, and other social and economic forces. In other words, the jobs just aren’t there, and are getting even less there with each decade. The demand for more qualified workers, however, is growing. And those jobs and professions are far more secure and better paid, with good opportunities for further advancement and training. So why aren’t they trying to get as many welfare beneficiaries as possible qualified for these jobs?

Well the answer to that didn’t take much thinking either – because we currently have a right-wing government (although left-wing ones haven’t done that much better in recent decades), who wants to please their voters by being seen to ‘get tough’ on those dreadful ‘bludgers on the taxpayer’. (There have been further changes in government policies since that have confirmed this.) So, in order to please their right-wing, ‘beneficiary–bashing’ voters, they ensure the poor will stay poor, there will continue to be a shortage of skilled and well-qualified workers in New Zealand, and our economy will continue to suffer as a result. Great stuff, eh.

This is just one example of what I mean by ‘short-term’ thinking, crazy, expedient decisions that have long term effects. I sat in my car, biting back tears and rage, with a sick, swirling confusion in my heart. It was then I first consciously thought – what kind of alien world do I live in, that such decisions as these are seen as ‘good’ ones? How do people justify such stupidity, even to themselves? I even briefly wondered if I wanted to stay in such a world. I could give you lots of further examples, but anyone who looks around with a clear eye, will see plenty for themselves. Certainly I see plenty, just about every day, and being a bit of a ‘history buff’, I read about even more in the past. No wonder we aspies feel like we come from another planet, when such values as these rule on this one. Yes, I know there are some good people and organisations out there, who are trying to counter-act all this crap, who do care about the poor and the vulnerable, look to the future, etc etc. But it often seems to me that they are fighting a losing battle.

So do you ever feel that this world is an alien place?

(Oh, and in case some are thinking well there’s the Government student loan scheme, even if I qualified for it – and I doubt I do – it would be foolish in the extreme at my age and level of physical health, to take on a huge debt. If I was 20 or 30 years younger, perhaps; though it must asked, what long-term hardship is it going to cause those beneficiaries who do get those loans, and then have to try to pay them back as well as support kids and/or cope with a disability, and who have started studying later in life than most students anyway? Seems to me they’re behind the eight-ball before they even begin. And I’m not even going to get into the craziness of having a loan scheme in the first place, rather than simply making tertiary education free or near-free, like it used to be.)

Sunday, 3 July 2011

Suppressing My Autistic Reactions

It seems this has been a month for getting things off my chest. I’ve been thinking a lot lately about how for so long I’ve repressed and stifled my ‘natural autistic self’, ie turned a natural reaction into something else, or somehow covered it up, suppressed all outward manifestations of it, or simply stopped myself completely from doing it, at least in front of others.

So far, I can see two main areas in which I’ve done this. The first is sensory-related. Almost as far back as I can remember, my acute sensory perceptions have not been granted any validity, or any space simply to exist. When I complained, displayed discomfort, tore off an irritating item, ripped a label out, put my hands over my ears, covered my eyes, insisted on a hat and sunglasses even on grey winter days, refused to eat certain foods, gagged or retched – whatever the reaction was, to an overwhelming stimulus – others’ responses were all pretty similar:–

“You’re too picky”. “Don’t be so fussy”. “It’s not bothering anyone else.” “Why on earth are you wearing that?” “It can’t really be that bad.” “Can’t you just put up with it?” “You’re so weird.” “You’re being over-sensitive.” “Just be quiet.” “Quit complaining.” “You’re making a fuss about nothing.”

And on and on. So, over time, especially as I grew into adulthood, I did stop complaining. I shut up. I gritted my teeth, hunched my shoulders, and forced myself to endure - piercing, blinding lights that made my eyes run like Niagara. Smells that made my gorge rise and my skin crawl. Foods that made me gag and my stomach lurch. Clothing that felt like people were sticking pins in me. Noise that battered me, or seemed to be drilling holes in my head. And when I couldn’t bear it anymore, I fled. I hid, learning to cry without sound, in private, in toilets, or head down in cars, or behind bedroom doors. I learnt to not buy strongly scented toiletries or cleaning fluids, and some types of fabrics. I avoided certain foods, and noisy places and people. I circled around strong smells, or left the room. I made excuses and invented reasons why I couldn’t do something or other. I got called ‘anti-social’, and asked ‘where did you get to?’, and ‘what are you doing in there?” (Toilets are a great place to hide, you can always answer “what do you think I’m doing!?”) I grew ashamed of my ‘weakness’. I assumed others were somehow stronger than me, braver than me, better than me. I saw myself as ‘less than’ them, for not being able to put up with the things they said were ‘nothing’. It never occurred to me that they didn’t experience the same reactions I did. I leave it up to you, to imagine the toll all this took on my nerves and physical strength, not to mention my self-esteem.

The other area in which I suppress my ‘autistic’ reactions is in my movements. I hesitate to call them ‘stims’, as I’m still not entirely sure what counts as a stim. All I know is, my whole life I’ve had these movements I feel compelled to do. I rock gently, or twist and contort my body around. I do a jiggle up and down; or rise onto my toes and down again, I move from one foot to the other, wiggle my toes, or do a kind of ‘all-over’ wriggle. I run my fingers along any pattern, on a tablecloth or whatever. I fiddle with scraps of paper, or my watch, or some other part of my body, like my ears. I do a sort of ‘twisting’ motion with my hands. And sometimes, especially if I’m restless, or feeling good for some reason, I sit up in bed and bounce like it’s a trampoline, or maybe thrash my legs around, or my arms, maybe laughing, or crying a bit. And others I can’t describe - they are simply movements that help me connect to my body and the world around me.

And people’s reactions?

“Sit still.” “Stop fidgeting.” “What’s up with you?” “Do you need to go to the toilet?” “You look like you’re about to take off!” “Have you got ants in your pants?” “What are you so excited about?” “What’s with the dance?”  “God you look so weird when you do that.” “Oooh-kaaay…” Sniggers, stares and ridicule. Jeering comments thrown from passing cars.

And more, and more. And yes, over time I stopped a lot of these too. There are some things I haven’t done since childhood, such as jumping up and down when excited or upset, or twisting around and hanging upside down on living room chairs. And the rest, well I learnt to do them in private behind a closed door, or when no-one else was around. In time I suppressed so many I couldn’t even do them in private anymore. (And then I wondered why I felt tense so often, or detached from my body. Huh.) Some movements I learnt to disguise, turning them into something else, something more ‘socially acceptable’, or to make excuses for them (“I’m just doing a stretch.” “I’ve got an itch.” “My wrists are stiff from the computer.”). It’s only since learning about AS, that I’ve begun to examine my movement patterns, and realise how much I’ve suppressed or disguised, not even admitting to myself that I did anything ‘unusual’. This really struck home for me the other day, when I was out for a walk. It was late, getting dark, the light was poor, and no-one was around. I was only dimly aware I was doing a movement with my hands that could best be described as a sort of twist-and-flick at the air – until car lights warned me of approaching vehicles, and I turned it first into a clapping motion, then a rubbing of hands together. It was cold, so this was okay, right? I thought, my God, how many times have I done this, automatically changed a motion that feels good, into something basically meaningless and useless to me, but ‘passable’ to others, simply in order not to attract unwelcome attention?

And what price have I paid for it? What price have I paid, for suppressing so much of my self, my natural movements and reactions to the world? How much of a part did this play, for instance, in my getting Chronic Fatigue Syndrome? I know that stress was and is a major factor in my illness. How much stress has been contributed by these suppressions of my true self, I wonder.

And how much can I reclaim what is natural to me? I’ve learnt the hard way that it’s not good to make a target of yourself. That’s become too ingrained in me now to just drop, even if it wasn’t unwise. But I would like to at least when by myself or with others on the spectrum, or others I trust, to let my true self emerge more. To say when some noise or smell is too much, or that I don’t wish to eat certain foods. To move in ways that soothe me or let out stress. To be honest. To be me. The real me, not the self I became to please or placate others. I am so tired of not being that true self.

To be my real aspie self. That’s what I want, more than anything. Wish me luck with it.