The Things I Do And Don't Care About

I’ve been thinking lately about the things I do, and do not, care about. I’ll start with the latter first, because they have especially been on my mind. 

I don’t care what others think of me. For much of my life, I was a classic people-pleaser, riddled with anxiety about what others thought of me, trying to live up to social expectations and ‘earn’ approval. Eventually I realised this was a battle I was doomed to lose. No matter how hard I tried, I couldn’t mask well enough, pretend well enough, be good enough to be truly acceptable. So I gave up. Not all at once, but gradually and definitely, and the older I get the more I simply don’t give a rodent’s posterior what people think of me. It’s very liberating.

I don’t care what people want if they don’t say it. I used to fret obsessively over this too, trying to figure out what people wanted. Now, if people don’t say what they’re thinking, I can’t be bothered trying to read their minds. Why should I? If they can’t be bothered being upfront and honest, I can’t be bothered engaging. Say it or stay silent, I don’t care.

I don’t care what people think about my appearance. This is another thing I spent a good deal of my earlier years fretting over, trying to ‘fit in’, whether it was with ‘normal femininity’ or ‘right-on lesbian feminist’ rules or ‘hippy left’ style or whatever. Nowadays? I’m a t-shirt and jeans person, rarely wear makeup, have short hair, and sometimes get mistaken for a man, at least until I turn around or speak. But I do love bright colours and jewellery (though I don’t wear it much for sensory reasons), have even worn a skirt on occasion (okay, for funerals, but still). If anyone doesn’t like the ‘look’ of me, however, my answer is simple – don’t look! I don’t care what others wear either. There are far more important things.

I don’t care what people think about how I live my life. People have long been trying to tell me how I should live my life, from my parenting (often from those with no kids or experience with them), to how, when and how much I should ‘socialise’ (regardless of me trying to tell them I can’t do it like that). But possibly the biggest criticism has been around how I manage my disabilities, especially my CFS. I’ve been criticised for taking vitamins - ‘they’re just expensive pee!’ - even though they have literally saved my life, told I should ‘just go for a run round the block!’ at a time when I couldn’t have crawled around it on my hands and knees, and had an actual naturopath I’d formerly visited tell someone else that it was ‘a pity’ I’d gotten a diagnosis of CFS, as I would ‘just use it as an excuse’ to not try to get better. I kid you not.

So what DO I really care about?

 I care about one Big Thing…

The state of the world.

Last month, our former Prime Minister, Jacinda Ardern, told the 2025 Yale graduating class that the world has turned into “an all-out dumpster fire”. She is so right. Now, the world never has been a wonderful place (newsflash : there never really were any ‘good old days’). That’s why my generation fought so hard to change things (yes, those boomers people love to criticise, even as they enjoy the benefits we gained them). But more recently, it’s become just… awful.

There is no other way to describe it. Fascism on the rise, so many of the advances we fought for now being either eroded or outright destroyed, and not just in America either, though that is definitely the worst conflagration (and it is literally turning into an actual conflagration in parts, eg ICE agents tear-gassing protesters, Marines brought in, actual goddam MARINES), entire groups living literally in fear of their lives, the rich hoarding more and more wealth while the rest of the world struggles ever harder, too many fools trusting other fools rather than proven and verifiable science, disbelief of the media even when they’re reporting live on actual horrific events (I don’t have any special love for the media, but come ON folks, use your brains), Certain Nations sitting back smirking behind their hands at the havoc they had a hand in creating, genocidal wars where children and other vulnerable are dying by the dozen every day for the benefit of the greedy and the power-hungry, incipient environmental collapse while our politicians quibble about who has to give up the least, yet other nations attempting to position themselves to be Dominant Powers when the dust settles… on and on it goes, and there doesn’t seem to be any end to the horribleness of it all.

Or my sense of helplessness and horror in the face of it all.

And people think I should worry about what I or others wear, or what others think of me, or what some dipstick who doesn’t even know anything about CFS - or any other condition I have – thinks about how I should be handling my health or my life? When there’s so much awful crap going down? Are you kidding me?

Get outa here.

We Need A TV Special

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

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

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

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

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

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

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

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

It's Time to Change the Negative Image of Autism

It’s time to change the negative image of autism.

We see it everywhere – anywhere autism is mentioned you can almost guarantee, if it’s not written by autistics themselves, then the image of autism is overwhelmingly awful. It’s a ‘tragedy’ and a ‘burden’ on parents, or a ‘monster’ which ‘steals’ children away and turns them into cold, unfeeling automatons, spinning or flapping objects and ignoring people; it’s  something that should be ‘cured’ or ‘therapied’ away, gotten rid of, by whatever means possible, and as fast as possible. And the picture of adults is in some respects even worse. We are either totally non-existent and hence invisible, or we’re ‘institution material’ - little better than zombies to be ‘tidied away’ somewhere out of sight of ‘normal’ people, pitied perhaps, but never the equals of those ‘normals’. Or at best, we are personal-hygiene-challenged computer geeks, with zits and zero social skills, necessary perhaps but again, hardly fit company for ‘normals’.

As I’ve mentioned in a previous post, this is what my friend John Greally calls the belief “that ASD is something to fix / therapise / eliminate / exterminate.” Furthermore, he comments, “If I am broken, then lay me down, drug me, benefit me, patronise me, glint at my least achievement and parade me. And by existing standards we are all broken.”

Compare this to, for instance, the current approach to mental health. Paula Jessop, another aspie friend, has commented that people she talks to in the mental health field are amazed at the treatment of autistic people. They have said to her that autistics are in the position that people with mental health issues were in some twenty or thirty years ago, of being ‘acted upon’, rather than being encouraged to be in control of their lives/condition. And there are certainly many similarities between the old and often harsh treatments (shock treatments, incarceration in mental asylums, ‘zombie’ drugs, etc) once given to mental health patients, and the ‘therapies’ now being inflicted on many hapless and helpless autistics.

Remember those mental health ‘know me before you judge me’ ads? And John Kirwan, the ex All Black and hard man, talking about his depression? Perhaps we need a similar set of ads, and/or some prominent person to come forward and tell the public – we are not Bad, Wrong, or Retarded. We are simply Different.

Because the outcomes of the ‘broken’ or ‘deficient’ viewpoint can be, and all too often are, catastrophic. Children being dragged through harsh ‘therapies’, which can involve physical violence, punishments, denial of food, denial of stress-relieving stims or suppression of even the slightest ‘autistic behaviour’. All sorts of weird and not-so-wonderful ‘treatments’ inflicted on their young bodies, which in some cases have even killed autistic children (better dead than autistic, some parents seem to believe). Parents being told that there is no future for their child, that their child will never love them back, and suffering agonies over the diagnosis. Or spending fortunes on those therapies and treatments, exhausting themselves and their bank accounts in the process, or spending their days fighting ‘the Big Bad Enemy’ of autism. Some of those same parents talking in front of their children about how ‘terrible’ autism is, how much of a ‘burden’ it is, and how they want to ‘get rid of’ the autism, at any cost. Autistic children growing up knowing that their parents reject the core thing that defines who they are. Young autistic adults who refuse to identify with autism, even if it means they deny themselves support and what little services exist for them, because they have so thoroughly absorbed the ‘autism is bad’ belief. Or adults who do accept their autism, but spend their lives feeling bad about themselves, and wanting to be somebody else – anything else, but autistic. And yet other, older adults, who have managed to stumble through decades of adult life somehow, always knowing they are ‘different’ and anguishing over it, but never thinking to identify with autism/Aspergers, because, well, it’s those ‘weirdos / geeks / retards’ over there, right? Not them. Rock-bottom self-esteem, self-harming, depression, suicides, hospitalisations, stress-related physical ailments, high rates of unemployment or under-employment amongst adult autistics, and more. And more. Wasted talents, wasted lives, wasted money, wasted potential.

Demonizing the autism helps no-one, not the parents, not the autistic children, not the adults they will become, or the adults that already exist, nor even society in general. We have real talents and abilities that could be utilized for the benefit of all, which are being ignored. Instead of being considered a problem, we could be seen as a resource and opportunity.

This isn’t about denying the real difficulties we have, or the difficulty parents have in raising autistic children, especially the more ‘severely affected’. Rather, it’s about affirming that the image is wrong, not the autistic person. That to reject the autism means rejecting the autistic. Let me repeat that, so there is no misunderstanding. Rejecting the autism means rejecting the autistic person. Anyone who rejects their child’s autism, or their own, rejects the child, or themselves. Autism is not a ‘layer’ that can be peeled off to reveal the ‘real’ person underneath. Nor is it something that has ‘stolen’ your ‘real’ child. It IS the real child – or your real self. And it’s not bad, mad, a tragedy or a monster. Unless someone makes it into one, in their minds. It simply is. A different way of being, but not necessarily a lesser one – again, unless it is made so in someone’s mind, and then in their lives.

Perhaps we need our own ‘autistic pride’ movement, similar to that of the ‘Gay Pride’ or ‘Black Pride’ movements of the past. Certainly, the time seems right to push for more realistic images of ourselves in the media, to ‘come out’ as autistic whenever possible, to get the facts about what it’s really like to be autistic ‘out there’, to the media, the justice system, health professionals, the education system, etc etc. Indications are that at least some are willing and indeed even eager to listen and learn. I won’t say we have nothing to lose, that would be foolhardy, but haven’t we’ve suffered enough? Hasn’t there been enough pain, enough trauma, enough of everything?

So let’s do it. Let’s get out there and do whatever we can, in whatever way we can, to change how autism is portrayed, to put an end to those harmful negative images. I believe it’s the single most important and liberating thing we can and need to do, for all our sakes.

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.”

Sigh.

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.

Justice for Arie at last - Part One

Yesterday, Monday, 22^nd 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.

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 naïve 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.

Something That Really Bugs Me About Most Autism Articles in the Media

I've clarified something that really bugs me about most articles about autism in the mainstream media (not our own of course). It's that they never, or hardly ever, interview anyone who's actually got autism. Can you imagine doing an article on, say, living with a kid with diabetes, and not interviewing either the kid ( if old enough) or an adult with diabetes? Or cancer, mental health issues, spina bifida, etc etc? Indeed, just about any condition you name, they will always do their best to interview those with the condition, or, if it's about kids and they're too young, to interview some adults with it. In other words, they go for journalistic balance.
BUT NOT WHEN IT COMES TO AUTISM. The most I've ever seen is the occasional sidebar, usually with someone like Jen Birch. (She must get sick of being interviewed by NZ media, every time autism or aspergers comes up!) Otherwise, it's like there is this great gaping hole in their articles.
I can only presume it's because of the overwhelmingly negative image that autism has, and which they continue to foster. I'm unsure whether those on the spectrum are assumed to be too 'handicapped' to be able to communicate their position (even those who are obviously verbal, and adults), or whether they aren't seen as having a valid viewpoint or position to discuss. Either way, the image presented is either of children who will grow up into remote, uncaring, selfish 'weirdos' and semi-automatons (with spots, BO, thick glasses and pocket protectors perhaps?), or, if 'lower functioning', someone to be put into 'care' of some kind, and forgotten about. Certainly not anyone the average person would want to know, or make a connection with, or learn about the experiences and viewpoints of.
I could say 'well that's their loss', but in truth, it's ours. Through such attitudes being common, and commonly perpetuated by the media, we continue to be marginalised, dismissed, rejected, stereotyped, bullied, harassed, shut out of employment, and generally excluded from so much of life, and the world. We end up lonely, bruised in spirit, often bitter and cynical, with mental health issues like depression and anxiety disorders, not to mention frequently living in poverty, or homeless. In short, we are suffering, and while one article alone doesn't cause this, it certainly won't help either. If only someone would do a REALLY balanced article, one that puts the other side of the story, and starts to demolish some of the myths, eg that we are incapable of love, have no capacity for empathy, and no feelings.
If only. I must confess, i'm not holding my breath waiting.

Autism : Love as a One Way Street?

Recently I read an article in the latest issue of the New Zealand magazine ‘North and South’, called “Autism: A Mother’s Story”, also labelled, on the cover, as “Autism: When Love is a One Way Street”, about a young autistic boy and his parents. I was determined not to let this latter put me off – it was obviously done to sensationalise and sell copies, right?

At first, it seems, well, fairly ‘well-balanced’. This is a mainstream NZ publication after all, and the words ‘monster’ and ‘stolen’ are nowhere in evidence. And it’s sympathetic… But. A more discerning read reveals underlying biases: –

1) The sympathy is for the parents, especially the mother. Nowhere is there any sympathy for the child. When the mother explains, for instance, that she thinks his language delays are due to auditory processing problems, nowhere is there any hint that this, or anything else, might be a source of frustration for the boy, or for any autistic person for that matter. It’s all about how hard things have been for the mother, how ‘heroic’ the parents are, etc etc. (I’m not saying that it isn’t difficult bringing up an autistic child, but plenty of testimony has now emerged that life is damn hard for the growing autistic too.)

2) Much is made of the autistic child’s ‘inability’ to show love and affection. (Translation: he doesn’t show it how we expect, so therefore he doesn’t feel any.) Yet despite acknowledging that the boy “is capable of affection and loves hugs and the sensation of skin on skin”, they still bang on about ‘love being a one-way street’, pointing out that he sometimes calls his mother “by the name of one of his therapists as though the distinction between mother and therapist is lost on him”. Or, could it possibly be, that he simply doesn’t understand or remember names too well? And could it be that he does love his parents, but has no understanding that this can or should be expressed, let alone how? The underlying assumption or implication seems to be that autistics don’t have feelings like ‘normal’ human beings do, that they are cold, callous, selfish and uncaring.

3) Autism is still depicted as a ‘terrible’ thing. On the first page, we are told how, when she was told her son had autism, her reaction was that, having as older parents had all the tests to reduce the chance of a disabled child, “now they had a child with one of the worst of all”. Unquote. Sigh.

4) There’s no understanding that things might develop or change as the child grows older. The assumption is that the child will always be this way. (He’s seven!) Yet even a little research would have told the journalists that we on the spectrum are late maturers (often very late), and continue to grow our capabilities well beyond the usual age at which those of NTs become ‘fixed’.

5) There’s also no real understanding that autism is a spectrum varying in its degree of severity or its range of symptoms, and certainly no mention that at least some parents don’t see it as a ‘tragedy’. Or even that some parents are on the spectrum themselves.

6) And of course there is next to no mention of autistic adults. We might as well not exist, as far as this article is concerned, except in the sidebar about a different child, whose father is related to the now deceased author Janet Frame. And there they refer to her probable HFA or Asperger’s as “mental illness”. I kid you not.

This same family were the subject of a previous article in the NZ Listener in 2007, when the boy was only three. It had much the same tone, the only thing really different was that the family were then at the beginning of a whole host of therapies, which, the mother now admits, were “useless” and “a major scam”. (Oh, and the Listener article had a sidebar on Jen Birch, not the media’s first, or last, interview with her. I have immense respect for Jen, but the way the press uses her as a ‘go-to’ person for AS, you’d think she was the only adult on the spectrum in NZ.)

So my overall impression? That it’s ‘business as usual’ in the media regarding autism, it’s still ‘Awful Autism’, autistic children are still ‘cold’ and ‘heartless’, have no real feelings (and therefore we needn’t worry about them), they’re the last sort of child any parent would want, and autistic adults are invisible. Autism is getting ‘air-time’ and ‘page-time’, yes, and that’s good in a way, but there’s still little real understanding of autism, and the perspective of the autistics themselves is still missing, still not valued, not even truly recognised as existing. And this doesn’t look like changing any time soon.

Sigh. And double sigh.

(Quotes from “Autism: A Mother’s Story”, North and South magazine, April 2011 issue.)