Monday, 29 August 2011

First Responder Training in Autism

One thing which has been on many aspies’ minds as a result of the Arie case is the need for police and other ‘first responder’ training in how to recognise and handle autistic people.

Now some might think, “oh, why should they get special treatment?”, but the issue is not ‘special’ treatment so much as appropriate treatment. Imagine, for instance, that a police or ambulance officer sees a person staggering down the street, maybe falling down, twitching and shaking, slurring their words. Their first thought is likely to be “hmm, got another drunk or druggie here!” But if they then found out that the person was actually a diabetic in dire need of insulin, or an epileptic on the edge of a seizure, their whole approach would of course change.

And so it is with autism. Use your imagination once again, and visualise a police officer who encounters a person who ‘walks funny’, who makes inappropriate eye contact or none at all, who ignores social niceties; flinches from bright lights and the clanging of steel doors, seems confused under questioning, gives ‘strange’ answers, or asks lots of ‘strange’ questions themselves; someone who perhaps rambles on and on about things that have no relevance whatsoever to the situation (in the police officer’s eyes anyway), or at any point suddenly ‘shuts down’ and refuses to talk anymore, or insists on using a communication device that the police don’t understand; or suddenly goes into a huge ‘tantrum’, throwing objects, screaming and shouting, or bursting into a sobbing fit, perhaps banging their head against a wall.

If this hypothetical officer had no experience with autism, and no knowledge of it, wouldn’t they likely think the person was drunk, drugged, a psychiatric case, or guilty of something (“He won’t look me in the eye”), or just ‘faking it’ (“She could talk just fine half an hour ago!”)? But a basic knowledge of autism would enable them to see that the person is simply frightened, confused, overwhelmed, and probably experiencing the breakdown or loss of what few social skills they possess, not to mention sensory overload; and that further pressure will only worsen the situation. They could dim lights, provide a less noisy environment, etc etc, and above all not assume the person is ‘guilty’ simply because they don’t respond ‘appropriately’.

This is not ‘special treatment’, but simply common sense, once you understand just how differently autistic people experience the world around them. It’s similar to how knowledgeable individuals interact with people of different cultures. In Samoan culture, for instance, you always put yourself physically ‘lower’ than someone who is above you in status, and staring someone right in the eyes is considered rude. Thus a Samoan, intending to be polite, will immediately sit down, and won’t meet your eye. If they didn’t know, a ‘Palagi’ (white person) might think the Samoan was being rude or evasive. Many other cultures have similar rules. It’s generally only in Western cultures that looking someone straight in the eyes is considered a good thing. This is just one small example of how things can seem very different, once you understand the person you’re interacting with, and where they are ‘coming from’.

Training in awareness of autism for police and emergency personnel isn’t about ‘special treatment’, but rather about understanding and helping all members of the community, in the best way possible.

Sunday, 28 August 2011

Justice for Arie - Part Four

It’s said that every cloud has a silver lining. Just last year, at an aspie gathering, we were talking about how we on the spectrum have been slow in building a really solid ‘neurodiversity’ movement similar to the feminist, gay and black liberation movements. This is because our very nature – individualistic, eccentric, lacking in social networking skills, executive functioning skills and sometimes even social inclinations – means such a ‘social’ movement has been hard to get going properly. Not to mention the fact that simply surviving in an NT world is struggle enough for many of us without being politically active as well. (I do respect the neurodiversity activists everywhere, who have done their best to create such a movement. It’s simply that most aspies/auties are not in touch with this, or able to participate, for all the reasons I’ve said.) I remember remarking that we needed some kind of a ‘cause célèbre’, to bring us together, fire us up, the way that the gay liberation movement for instance was started by the Stonewall Riot in the late 60s, and further fueled by the murder of Harvey Milk.

Well, now we’ve had one. This doesn’t mean for one moment that I would have wished on Arie and Michael, or anyone else, the troubles they’ve had. I simply meant that lacking such a case, we would remain largely fragmented and isolated. Arie’s case has brought Kiwi aspies and their NT friends and supporters together in ways nothing else has before, organised and galvanised spectrumites like never before.

Let’s not let this impetus subside again. Let’s use it to, for instance, get some real training for police and other emergency staff, as to how to recognise and best deal with those on the spectrum. Let’s use the contacts forged with the media, to take the next steps forward in bringing our issues before the public eye, and in increasing understanding of those on the spectrum – and perhaps finally ending at least the worst aspects of our long, lonely, marginalised and invisible existence.

Let’s start writing – more blogs, magazine and online articles, plays, books, TV and film scripts, etc, etc, etc, and populate them with realistic, fully-rounded (for once) autistic characters. Let’s paint and sculpt and create music, and do whatever else we want, in ways that express our autistic reality. Let’s stop being ashamed of and hiding our real selves, and let them out, in all their stumbling, rambling, quirky, eccentric, but magnificently unique glory.

And let’s start insisting to government departments and the like, that they change what my friend John Greally of Aspergers Syndrome New Zealand calls their old deeply flawed premise that ASD is something to fix/therapise/eliminate/exterminate, and instead insist on policies that can offer real help. Let’s transform the question, as he puts it, from "what are we [NTs] going to do about ‘their’ behaviour" (ie fix the broken) to "how can we appreciate them more for being who they are" (love the gift)”. Let’s get out there and create some real, and long overdue change.

And let’s see the light bulb, not the puzzle piece, become our symbol. Let us ensure a light bulb of awareness goes on for everyone.

Justice for Arie - Part Three

One little-known facet of Arie’s case has been the ‘non-association order’ that was put on Arie and Michael. Meant to stop hardened criminals from getting together to plan their next crime, it was singularly inappropriate in this case. Not only are Michael and Arie not ‘hardened criminals’, there’s a definite whiff of homophobia involved, in the sense of a same-sex relationship not being given the same value as a heterosexual one. Can anyone really imagine a straight couple, a married couple even, being slapped with such an order? Being ordered, in effect, to live apart, and have no contact at all? Would such an order even have been sought, let alone granted, if the partners were a male and female?

This order has taken a huge toll on them. They lost their flat, as they couldn’t live together. Their furniture had to be largely given away, as they had nowhere to store it. Their cat, left to fend for itself the first eleven days while they were both in jail, went ‘walkabout’, and has only just been found again recently by Michael. By the time the order was finally lifted, after three months, they were living with others on opposite sides of the city, and hardly able to see each other even then. They tried to move to another city and start again, but that proved difficult as they had to keep coming back to Christchurch for repeated court appearances.

The emotional toll it caused as well can only be guessed at. Though Arie was released from jail after eleven days, Michael spent six weeks inside – all the time without being able to have contact with his beloved partner. Though both had others around them for support, to not be able to even talk to the main person in your life must have been distressing. For Arie, as an aspie, it would also have been extremely difficult to be without his main ‘interpreter’, mediator and supporter in dealing with the confusions and stresses of the NT world. Any aspie who has such a partner or who feels the lack of one, will know how hard that must have been. As for Michael, he says of Arie simply, “he’s my rock”.

Arie and Michael – plus cat – are now planning to start their lives over again in a new city. They have behaved with enormous dignity and restraint throughout this whole business, and I’m sure many will join us Kiwi aspies and Arie’s NT supporters in wishing them all the best, and hope that their future proves to be a whole lot brighter than their recent past.

Thursday, 25 August 2011

Justice for Arie - Part Two

The police press release about the dropping of charges in the Arie case is a litany of untruths. It has to be wondered – has Police Superintendent Cliff actually studied the facts of the case (and if he hasn’t, why not), or is this the version of events he’s been told (in which case someone has fed him some choice fibs), or is he telling us fibs himself?

Let’s examine those untruths. (And bear in mind, these words are from the official Police press release, on their website.) Firstly, he says that the two men were “seen entering” a building in the forbidden and patrolled ‘Red Zone’ of the CBD. He says that after “initially running from the police”, the two “were not compliant” and had to be “forced to the ground to be handcuffed”, and that it was in the course of this that Arie received a “bang to the side of his face”. He further says that they were “affected by alcohol and potentially drugs at the time of arrest”.

He then goes to defend the refusal of the police to grant diversion, claiming that this is only for those who “accept responsibility” for the offense, and then contradicts himself by saying that as there was a possibility of “issues of intellectual impairment which may [have offered] a defence”, they couldn’t grant it anyway. He maintains that “there were only two New Zealand police officers involved” and “no other police or defence staff [were] present as was later claimed”, and that he “fully back[s] the actions of the officers involved. Their actions were entirely appropriate”. He says that the reason that the “resolution” of these charges has taken so long is because of the delay in getting a psychiatric report, which indicated “diminished responsibility” on Arie’s part. And that they consequently decided to give Michael the “benefit of the doubt” as a result.

Translation and implications :- “they were two drunken and probably drugged louts caught red handed where they shouldn’t have been, doing what they shouldn’t have been, they tried to scarper (indicating sure guilt of something), they tried to fight the police and resist arrest, we didn’t hit them, the ground did it, they tried to weasel out of the charges, and in the end we let them off because Arie is a retard or a nutcase and we decided to let Michael off because he was there to look after his “mental” partner. But we’d do it all over again the same way if we had to.”


Now for the truth – the building was NOT in the Red Zone, but well outside it, and close to Arie and Michael’s home. The two men couldn’t have been spotting entering it, as Arie was in there for some while before Michael entered (it’s believed their torchlight was what attracted police attention). Arie had consumed a mere two glasses of wine earlier in the evening, and he never does drugs. They did not run, but rather froze in shock. Nor did they struggle or resist arrest, from the same shock, as they were quickly seized, thrown down and handcuffed, even as they tried to ask what was happening, or explain their presence there. And Michael maintains he clearly saw Arie receive a blow to the head after they were thrown to the ground. He also clearly remembers Arie’s stutter, which appears when he is under stress, being mocked and jeered at. And they still maintain there were more than two officers involved.

Subsequent to this, Arie did initially plead guilty, but despite the recommendations of no less than three judges, the police refused to grant diversion. The police were in possession of a psychiatric assessment as far back as May. And Arie and Michael’s real defense has always been not that Arie is ‘intellectually impaired’, but that no serious crime was actually committed by the pair. Arie has a slight speech impediment, but his intelligence is obviously normal, as is, I don’t doubt, his ability to know right from wrong. On the night in question, I believe it never occurred to him, in the midst of pursuing his ‘intense interest’ (I dislike the words ‘obsession’ or ‘compulsion’), that his actions could be interpreted as ‘wrong’.

Now some might think, ah well, what do a few details matter anyway? He got off, right?

But whenever the police publicly brand someone with the label of ‘looter’, or ‘burglar’ - or drunk, or drugged, or anything - the general population tends to take this as Gospel Truth, simply because it’s coming from the police, so it must be true, right? And if the defendant/s or their lawyer/s say something different, well, they would, wouldn’t they? The paradox is, that this gives the police carte blanche to lie if they want, and sometimes they do, because they can. I have seen it happen with my own eyes.

The untruths are not just a case of ‘sour grapes’, or a parting ‘up yours’ from the police. Potentially, they are seriously damaging to the public perception of those on the spectrum, which is not that good to start with. Many of the general public will have got the impression that here is a young man who got off serious charges because he ‘played the Aspergers card’. Or that having Aspergers means you’re a psychiatric case or intellectually disabled. The language of the media, who have consistently referred to Arie as ‘suffering’ from Aspergers, hasn’t really helped any. And the very people who we should be able to turn to for protection, may now prove to be our worst enemies.

Nor is this totally theoretical – every time this issue has come up on some public forum, on Facebook or elsewhere, someone always pops up with statements like “Well, if they do the crime, they should do the time”, or “no-one should get away with looting just because they’re aspie”. Repeatedly, those of us who know the real story have had to emphasize (you can almost hear the collective gritted teeth) that ARIE. WAS. NOT. LOOTING. End of. (I should add here, that this attitude comes equally from NTs and aspies, putting paid to the idea that aspies themselves believe we should have a ‘get out of jail free’ card, or that we lack the ability to form a sound moral code.) So simply by the police labelling Arie and Michael as ‘looters’, some believe their guilt from the start.

We aspies can be pleased that there’s been such unprecedented attention about this, that we adults on the spectrum have finally achieved a little public attention, and above all, of course, that there’s been a good outcome for Arie and Michael. But it has to be weighed against the damage done to our public image by such statements, damage that may take years or even decades to undo.

Do you hear that noise? It’s the sound of a whole bunch of Kiwi autistic adults banging their heads against the nearest wall, in despair or frustration …or a deep-seated and growing rage.

Tuesday, 23 August 2011

Justice for Arie at last - Part One

Yesterday, Monday, 22nd August 2011, Arie Smith-Voorkamp, the aspie accused of ‘looting’ two light bulbs six months ago after the Christchurch earthquake, finally had all charges dropped against himself and his partner Michael Davis. Amidst the general celebrations of his supporters, many thoughts came to my mind. I have organized them into three parts, and this is the first.

Part One

The media focus was on Arie’s “suffering” from Aspergers, with its “compulsions” which, it was implied, bordered on mental illness or even intellectual disability, and that he should be let off all charges because of this – “poor chap, he can’t help it”, sort of thing. Most aspies greeted this with a resigned roll of the eyes – or irritation that was suppressed in the interest of getting the case widely known.

The attitude of the aspie community, however, has always been  -
(a) that the facts of the case didn’t warrant the serious criminal charges that were laid (and to give them their due, the media did push this line too),
(b) that the ‘hard-line’ attitude of the Police was the result, we had reason to believe, of an attitude within the Police that autistic people are “nuisances”, and that consequently they wanted to “make an example” out of Arie.

Think on it. To be guilty of ‘burglary’ implies pretty much all of the following –
(i) going on to private property (house, shop, factory, etc)
(ii) with criminal intent
(iii) to take something valuable
(iv) for pecuniary advantage.
Only the first applies in this case – and given that the property had lain abandoned and empty for some time even before the two earthquakes, Arie can be forgiven for assuming that it was no different to taking stuff from a tip, a rubbish skip (dumpster, for any Americans), or a demolition site. Even Michael, in following him in to the building, was concerned for Arie’s safety, not any possible illegality. I’m sure it wasn’t till the police suddenly swooped in, that this possibility occurred to either of them.

So if the ‘crime’ was so minor, why then did the police continue to take a hard and uncompromising line? Why, even after the real story was known, and even after the owners indicated they didn’t want to press charges, did the police continue to pursue such a trivial case, that normally wouldn’t even have seen charges laid? If it was ‘looters’ they were wanting to ‘make an example of’, why did they not choose someone like those who stole generators being used by emergency services? When have their faces, their names, been paraded in front of the media? The initial ‘over-excitement’ (with the exception of the assaults, etc) can be forgiven in the circumstances (residents of Christchurch describe the city during this period as “like a war zone”). But the unyielding insistence of the police on some very serious charges, for a very minor offense, has to raise equally serious questions about the police attitude towards Arie in particular, and autistic people in general.

Saturday, 13 August 2011

The Spoon Theory, CFS and Aspergers

I found this website through a link on a Facebook group, and it’s well worth a look, especially if you have a long-term, ‘invisible’ illness or disability – or if you haven’t, as it will give you some idea of what it’s like to live with one.

I contracted Chronic Fatigue Syndrome in my late 20s, though it took another ten years, and a severe relapse, before it was diagnosed. Back then, it was a ‘new’ disease, and just as is starting to happen with Aspergers now, many of us who had it were derided as ‘riding on the bandwagon’ of something ‘fashionable’. We were sometimes told “it must be nice to just lie around and rest!” But believe me, there was nothing ‘fashionable’ about it (it was actually being diagnosed as far back as the 1920s, under different names). Nor was there anything ‘restful’ about being so weak I could barely walk, or lying awake well into the night sobbing because of the pain in my muscles, or being unable even to read or watch TV or have more than the briefest of conversations, because the mental effort was just too taxing.

I have long measured my illness in elephants. Years ago, I read somewhere (sorry, I can’t remember where, so can’t credit it), that having CFS is like having an elephant sit on you. I can personally testify that yes, you do feel that ‘crushed’ and broken. When my illness was at its worst, ‘elephant days’ were pretty much constant, thankfully they are now few. Many days are ‘elephant-free’, though I still don’t dare overtax myself. And on yet other days, the elephant sort of …hovers. Those days, I must be especially careful when I ‘measure my spoons’, when choosing what and how much to do.

There are of course many parallels between CFS and Autism, and the spoon theory will resonate with many on the spectrum. We on the spectrum must also calculate what’s within our capabilities. If we go out shopping in the afternoon, we may not have the mental, physical or emotional capacity to do anything ‘social’ in the evening. If several hours of our work day are taken up by a meeting, we may be too ‘empty’ to interact with a partner later. And so on. Even the simplest things take so much more of our time and energy, we have a social ‘thimble’ rather than a social ‘cup’, and we must be careful not to stress ourselves to the point of meltdown or shutdown.

And like so many with invisible illnesses or disabilities, we get little sympathy, because no-one can SEE our pain, our suffering, our exhaustion. Or not until we totally freak out or collapse or go into meltdown. And even then, we can be judged, told we are ‘making a fuss about nothing’, or ‘being a drama queen’, or to ‘pull yourself together!’ Etc, etc, etc. If you’re on the spectrum, and/or have a major ‘invisible’ disability, you’ll know the sort of thing I mean. It’s things like this, that see so many on the spectrum identify with other disabled, and some even join the disability rights movement. Personally, I don’t have the energy. (Calculating those spoons, those elephants, again.) But I do understand why.

So give it a read. Let me know what you think. And if you don’t have a disability, and/or aren’t on the spectrum, then maybe, next time someone who is, or who has one of those ‘invisible’ disabilities, tells you they can’t do something, believe that they really, really, can’t do it.

Sunday, 7 August 2011

Five Things We'd Like People to Know About Adults on the Spectrum

Paula Jessop, a Kiwi aspie and friend of mine, was preparing a presentation on ‘Adults with ASD’ recently, and asked us aspies on Facebook, what were ‘The Top Five Things We Want People to Know About Adults on the Spectrum’. The resulting discussion set me off thinking, and I’ve formulated my own list - with contributions from Gabrielle Hogg, Karleigh-Jayne Jones, Rebecca Lumsden, and Leith McMurray.

Anyway, here’s my five things :-

1) That we are human beings first and foremost. We have wishes and dreams, hopes and ambitions, experience love and anger and happiness, the same as NTs do. We may experience them differently, or have different dreams, but the similarities are often stronger than the differences. Sometimes it’s too easy to perceive our behaviour solely through the distorting lens of ‘they’ve got this Condition’. As Rebecca puts it – “Not ALL our behaviour is autistic, sometimes I’m just having a bad freaking day.”

2) If you’ve met one person with autism, you’ve met one person with autism.Every person with autism is an individual, our autism is expressed differently for each of us.” (Rebecca) Autistics are not all maths geniuses (I’m certainly not!), computer nerds, train-spotters, and/or lovers of fantasy/science-fiction. Nor are we all (or even mainly!) recluses and obvious ‘oddballs’, social rejects with no sense of humour and a lack of personal hygiene. Many hold down jobs, or are married and/or raising children. Some of us have become very good at concealing our autism to ‘fit in’ (it’s still there underneath of course). And some of us are female. As Gabrielle points out, “ASD looks different in women.” A stereotype is just that – a stereotype.

3) Autism is a Developmental Disorder. Our development is delayed, meaning that we often can’t do things at the 'normal' age, but this doesn't mean we will never be able to do it. It might just take us a whole lot longer. “Adults with ASD still may need help in independent living skills… [and some] may need help with communication issues… having a communication device may help them to become more independent!” (Gabrielle) Nonetheless, we are capable of much more than people think. “Don't underestimate us cause with the right support, we can do awesome things.” (Karleigh-Jayne)

4) Many of us have other, ‘co-morbid’ conditions as well. (Gabrielle)This of course complicates the individual picture! These ‘co-morbids’ can include any or several of the following:-
Dyslexia, dyscalculia, dysgraphia, dyspraxia, hyperlexia; ADD/ADHD, sensory processing disorder, auditory processing disorder, prosopagnosia, executive dysfunction, communication difficulties; bipolar syndrome, depression, anxiety disorders, social avoidance disorders, alexithymia.
All these also occur without autism, but there is a high correlation. Most we are born with, but some are acquired through living in a world we find confusing, overwhelming, discouraging and unaccepting, eg depression. But never assume that a difficulty you have with an autistic person is due solely to the autism – it may be because of the ‘co-morbid/s’. Sensory issues especially “can make life hell!” (Gabrielle) Autism can also occur with unrelated conditions – I have heard of autistics who are blind, deaf, Downs Syndrome or physically disabled.

5) Autism means a different ‘mindset’. We act differently because we think, react, and feel differently to NTs. This different mindset is ‘hardwired’ into us, and can mean -
i) A focus on things rather than people, especially our ‘special interests’.
ii) An often extreme perfectionism, and rigidity of routines - “Please don't make plans and change or complicate them at the last minute! Make sure that your aspie friend knows exactly what to expect at an event/appointment etc.” (Leith).
iii) A lack of any instinctive ability to ‘read’ other people, which can make us appear ‘rude’ or ‘arrogant’. “Bluntness in speech may cause offence, this is not malicious… It is quite ok to point this out to an aspie (politely) and suggest it be re-phrased or recognised and apologised for… Emotion neutral is the way to raise problems with an aspie.” (Leith)
iv) Social difficulties and sensory overload means we can get overwhelmed easily, which leads to shutdowns or meltdowns. This is often beyond our control, so, as Leith points out, “Quiet and patience are the only tools to use, and it may take a couple of days for us to fully recover!”

And above all, remember – “We may not appear stressed, but interacting with NTs is way more stressful than they might imagine.” (Leith) A spoonful of simple kindness goes a long way.

Tuesday, 2 August 2011

Another Article published!

 I've finally gotten around to publishing another article on Suite 101, this one's for you 'foreigners', a bit of a guide for anyone likely to visit New Zealand for the first time soon (maybe for the Rugby World Cup??) or just wanting to know a little more about us Kiwis.

Hope you like it!

Monday, 1 August 2011

Don't Hate The Autism Either

I don’t normally bother to read the likes of these sorts of websites, they are entirely too much doom and gloom; but I was trying to find out why I had so many links to my blog from Age of Autism (I never did find out, I must have commented on a page somewhere, I certainly doubt I am in their list of ‘fave’ blogs, lol), instead I found this. And I just could not let it go unchallenged. Here is my comment, slightly edited.

“I would say, don't hate the autism either. I can sympathise with parents of severely autistic kids, but i do not think hating the autism will help either them or the child. Firstly, hating anything is a waste of energy, and keeps the parent stuck in the angry, grieving mode. It's hard, yes, but it doesn't have to be a big tragedy thing, not every parent of an autistic child reacts that way.

Secondly, Autism cannot be separated from the child - it's as much a part of them as being (in these instances)male, and (presumably)white and American. It can't be ripped off or out. Being taught to 'hate' their own autism, means sooner or later the child will hate themselves for being autistic. Is that what anyone wants for their kid? It harms the child in the long run. 

Consider this prospect - young adults on the spectrum, who have been taught to despise autism so much, they refuse to identify themselves as autistic, and deny themselves what support and services do exist for them, as a result. Or, they do identify with it, but are so ashamed of being autistic, because they know that it's ‘bad’, so once again they stay away from the places and people that could help them. Or, they are older autistic people who have somehow managed to fumble and bumble their way through life, always knowing they are 'different', and feeling 'lesser than' as a result, but never think to identify themselves AS autistic, because autistic people are 'those loonies and retards over there', not themselves, right?

Short version - please, don't hate the autism either. It's just as harmful, to both parent and child, as hating the kid.”

These, I might add, were not hypothetical scenarios I was talking about. See Rachel’s blog here, where she talks about the plight of young autistic adults who deny their autism. And I myself, like other autistic adults I know, spent many long, lonely, painful years not understanding why I was ‘different’, always feeling inferior to the ‘normal’ people, but never thinking I might be autistic, because of the negative stereotypes we all know of.

Whether the moderator has even let my comment through, I have no idea. Even if she does, there may be lots of negative replies or it will be just ignored or dismissed as ‘another one of those shrill neurodiversity nutters’, perhaps. I can but ‘plant seeds’, hoping that something I say, somewhere, will cause an ‘autism-as-tragedy’ parent, or someone else, to stop and think. And maybe listen, for once, to the ‘real’ experts in autism – the ones who actually live it.