And another excerpt....

Been a bit busy lately to do any writing, but here's another excerpt from my book…

I tried to perceive some pattern or order in what seemed a chaotic world, or failing that to at least create some small order in my own environment. As a little girl, I had played dolls tea parties with other girls – and been very disconcerted when they actually wanted to play with the dishes and cups I had so neatly arranged! I stopped playing dolls tea parties. Something similar happened with the ‘dress-up’ bag of adult cast-offs my sister and I shared, I enjoyed the actual dressing up and ‘arranging’ of costumes more than the playing. In fact, I wasn’t really able to think up these free-flowing, ever-changing dramas as the other kids did, and I tended to simply follow their lead. Once, all dressed up, I pranced out of the bedroom and around the house, wobbling in my too-big high heels, to the adults’ amusement. I remember smiling at their laughter, and anyone looking on would have thought me ‘normal’. But my smile was due to relief, not shared pleasure – for once, I had ‘got it right’.

Outside, I climbed trees, and played chasey and hidey-go-seek and Cowboys and Indians with my siblings, and would have seemed ‘normal’ enough then too. But if others wanted to change the ‘rules’ of these games, I would complain furiously. “You’re supposed to stay dead!” Once I ‘knew’ a rule, I did not want it changed! Changing rules, actually any kind of sudden change, made my stomach go all wobbly. As with dressing up, I was unable to ‘improvise’, or truly meld with others. I could only follow rules, or the lead of others – or be the ‘boss’! And if I was ‘in charge’, I was very bossy, rigidly so.

I also loved to play rugby with my siblings and our father at home. Strangely enough, though I was never any good at school sports, somehow I could ‘do’ rugby. I loved the hard running and tackling. It seemed to meet some need in me for whole-body activity and physical contact. Other times, my father would wrestle with us, all of us piled onto him, trying to hold him down. I loved this game, and was probably the hardest ‘wrestler’. For all of this, and my preference for shorts and trousers over skirts and dresses (to me they were simply more practical), I was labelled ‘a bit of a tomboy’….

…Sometimes I read fairy tales, and there I came across the idea of ‘changeling children’, swapped at birth, and wondered for a while if I was one. But I truly couldn’t imagine other-worldly creatures popping over to New Zealand to grab a child! When I was a little older, I wondered if I was adopted, if that was why I felt so different to everyone around me. But simple logic (something I believed in even at this tender age) told me this couldn’t be true either, and I eventually gave this idea up too. There was no explanation for my ‘difference’. The labels still kept coming though – I was ‘away with the fairies’, ‘lost in her own little world’, a ‘day-dreamer’, a ‘strange child’, and more, as others tried to grasp my ‘otherness’.

Another excerpt from my book...

Another excerpt from my book…

Just how I was ‘different’ only slowly became apparent to me. Too often, I would say things that to me seemed utterly normal and unremarkable - and anger, scolding, ridicule, jeering laughter or a shocked silence would follow. I was saying things formed by my particular ‘logic’ and thought processes, but I had no idea (and nor did others) of just how different these were. Hence, I could never anticipate what would bring this all this down on my head, or understand why it was so wrong. All I knew was it somehow was wrong, and me with it. There was nothing I could do but cringe and wait for it to be over. Over and over again, I would inadvertently break social ‘rules’ I didn’t know existed until I was told off for violating them. There seemed to be so many things that others somehow ‘just knew’, and which I was also expected to ‘just know’, and didn’t – until I made a social blunder. One day my mother was scolding me, “You should have known not to do that!” (whatever it was), and I protested, ”but how could I have known, if you didn’t tell me!?” We were both puzzled, but I was distressed as well, and horribly, horribly confused.

I didn’t have a name for this pain, anymore than I had a name for my other feelings. If someone said to me, ‘why the sad face?’, or ‘you’re happy today!’, I would feel with a shock of surprise, ‘oh! So this is happy, this is sad’, etc. I say I ‘felt’ this, because I didn’t think with words at that age, my thinking was more like a series of flickering images, or surges of wordless feeling like whales surfacing from my personal depths. I wouldn’t think in words till I was a teenager, and even now a lot of my thinking is visual – despite my facility with language, images are my ‘native tongue’.

Part of my social difficulty was, I think, due to being unable to connect and compare, and hence generalise and learn from, my experiences. Occasionally, after I’d messed another situation up, someone – usually my mother – would say to me, “but you should have known how to do (x), from (y) situation!’ I’d always be very surprised – it had never occurred to me that the two were in any way connected. Such skills as I had were, as Charlotte Moore so aptly puts it, “an archipelago of islands scattered across a sea of confusion… [not] even within hailing distance of each other.”[1] And though I was a voracious reader, I couldn’t ‘connect up the dots’ of any of the knowledge about the world I was accumulating either; it was simply a whole bunch of disjointed facts.

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[1] Moore, Charlotte; George and Sam (Penguin, 2005), p 37.

Behavioural Therapy - 'Normalization' vs 'Teaching of Skills'

Parents who are considering behavioural (or any) therapy of any kind for their autistic children need to ask themselves a crucial question – what is my motive for this therapy? What is the goal I want to reach?

There are basically two approaches to therapy, and hence two radically different goals: -

1) NORMALIZATION. This approach takes the view that autism is something terrible, a scourge, a deviation from the norm to be eradicated at all costs. All outward manifestations of it must be somehow ‘scrubbed’ from the child’s behaviour, so that the child at least appears normal, and ‘indistinguishable’ from their peers.

To effect this, the goal is to get rid of anything that ‘looks autistic’, in one way or another. This includes the repression or denial or ‘therapising away’ of such things as toe-walking, hand-flapping, monotone voices, long periods of time spent in special interests (categorised as ‘obsessions’, and therefore pathological), long periods of solitude (categorised as ‘anti-social behaviour’, and therefore again pathological), symptoms of sensory overload, the lining up of toys or other possessions, or indeed any kind of stimming.

2) TEACHING OF SKILLS. This approach takes the view that autism simply exists, and is neither good nor bad, but does present specific handicaps that the child can be helped to overcome, by the teaching of useful skills and knowledge.

These skills can start with things like basic communication and toilet training, and how to feed, bathe and dress themselves. The parents or therapists can then move on to teaching the child such things as how to use visual aids, follow school rules, or play with other children. As the child grows older and into adolescence and young adulthood, further skills can be added – how to manage money, interact with the opposite sex, cope with university/college, or live away from parents… The list could be endless, but the point is that autistic children WILL NOT LEARN these things without help, or will flounder severely as they try.

There are of course people who do both these things, considering the teaching of skills as part of ‘normalization’. Still, the general rule applies – they consider making the child ‘normal’ the over-riding goal, and the ‘skills’ are just a part of that. Whereas those who take the second approach, are very little concerned with such outward manifestations of autism as hand-flapping or toe-walking or stimming, and far more concerned with assisting the child to acquire concrete skills to help them cope with the world.

I also accept that the parents who take the first approach believe they are doing what is best for their child, that they act out of concern. But they are starting with the belief that it’s a terrible thing to be autistic, they generally suppose the child must be miserable simply because of being autistic, and so ‘must’ be happier without the autism. There’s a whole weight of assumptions there I won’t go into, but I would ask such parents to consider this:-

Autism is not a ‘layer’ obscuring the ‘real’ child. It IS the real child. Autism is an intrinsic part of themselves. To teach the child to hide/conceal/suppress/deny this real self and all its outward manifestations, is to force them into a foreign mold of ‘normality’, to feel that their ‘core being’ is rejected by those who claim to love them, and to teach them to devalue and even hate that true self. Low self-esteem, depression, and anxiety are virtually inevitable. Some young autistic adults even fall into alcohol or drug addictions, or attempt suicide, as a result. Moreover, if the emphasis has been too much on ‘normalizing’, and not enough on acquiring those skills and information the child really needs to cope, they can fall into the abyss of executive dysfunction (ie not having a clue how to organise or care for themselves), and their lives end up a mess, with consequent despair and self-hatred. Is this really what you hope to achieve?

Autism is for life. Yes, teach them whatever you feel they need to cope with the world, and to improve their lives. But young autistics also have the right, and the need, to go out into the world knowing they are valued and loved as they are, for all that they are – INCLUDING the autism.

11 April 2012 Footnote :- I have decided to call the 'teaching of skills' approach 'maximisation'. I say why here....

'That' Type of Autism Parent, and their Criticisms of Us

 A while back, I wrote in praise of the ‘other’ type of autism parent, the ones who DON’T subscribe to the ‘autism as tragedy’ etc viewpoint. But today I’d like to examine the ones who do, especially those who claim that we adults on the spectrum, especially the activist ones, are, (in my friend John Greally’s words, from the type of emails he gets several times a week) “nothing but a pedo nanny-state interfering molester trying to get at their kid's life and wreck it, to stop the parents grieving their child to death with therapy and crap, to restrain them from lovingly ripping their child's autism mask off, the asshole who caused autism - or if not - the asshole who stopped him getting treatment by whingeing and confusing people, an obstacle stopping funding or taking funding, a fake malingering foil to his child's wellbeing, the distraction from his sons serious needs, the coward hurting his brave son's interests..."

I could go on, but I think you get the picture. But let’s examine these beliefs, one at a time.

1) That we are ‘against’ all therapy, and just want the child to ‘vegetate’ in their autism. Not true – rather, what we challenge is -

            (a) the GOALS they hope to achieve through therapy - ie are they trying to ‘normalise’ the child, to ‘eradicate’ their autism - or to teach them practical skills and knowledge that will help them function in the world as an autistic? (I will talk about ‘normalisation’ vs ‘skills-teaching’ in a further post.)

            (b) The TYPE of treatment or therapy they use – we have serious concerns about many of these. Some are punitive, a lot are overly demanding of time and energy, most are expensive, many are useless (and hence a rip-off), and some are just downright dangerous.

This DOESN’T mean we are against therapy altogether. See my earlier post about ‘cure’ vs ‘healing’ for more on this.

2) That we want to ‘wreck’ their children’s lives. Again, not true. These children are future members of the adult autism community, our successors in effect, why would we wish to harm them? This seems to be an extension of the belief we are against therapy, but also I believe it results from our statements that autism is not the ‘Big Baddie’. To them, it is, and so they interpret what we say as ‘condemning their child to a horrible life’. I really wish I could find a way to communicate to such parents that being autistic doesn’t necessarily mean having a terrible adult life – that there are good things about being autistic, that even the ‘worst’ features of it (meltdowns, communication difficulties, etc) can be ameliorated or minimized without eliminating the autism itself, and that other negative factors are the result of social attitudes which can be changed, just as attitudes to gays, people of colour, women, etc have changed. Life as an adult autistic is different, sure, but not a death sentence.

3) That we want to stop them ‘ripping the autism mask off’ their children, and thus ‘saving’ them from Big Bad Autism. There’s some truth in this – to the extent that we know that the autism is NOT a mask, not a ‘layer’ superimposed on an otherwise ‘normal’ child. It’s an integral part of their/our being, their/our identity. Attempts to ‘rip it off’ usually only result in the child realizing that this core part of themselves is Not Acceptable to those around them, and so they learn to hide it, to suppress their reactions etc, to their detriment in the long term. Depression and low self-esteem are huge problems for adolescents and adults on the spectrum. Is this really what these parents want for their kids? I know that most take this approach out of love, but it’s a misguided attitude, just the same.

4) That we are standing in the way of their kids getting funding for help and support. There have been a few instances in the States where autism self-advocates have opposed laws that would force health insurance companies to, for instance, pay for therapies like ABA. They’ve done so out of concern that these therapies are not the best way to help autistic children, or that such programs might de facto become the only ‘approved’ way to do so, and other, better ways might not be allowed as a consequence. Perhaps these instances are the source of this belief.

Or perhaps they think that if ‘higher-functioning’ adults get support, it will mean less of the government funding ‘pie’ for things like teacher aides or other support for their kids in school. Or maybe the mere fact that adult autistics exist and are speaking up to say ‘being autistic is okay’, in their eyes is somehow ‘dooming’ their kids’ chances of getting those things?

Whichever, it’s a false belief. The amount of help or support available to anyone on the spectrum, adult or child, is minimal to non-existent. It needs to be increased sizeably for EVERYONE.

5) That we are ‘fakes’ determined to distract attention away from their child’s serious needs. This is actually extremely insulting, not to mention based on false (and outdated) ideas of what autism truly is, namely –

(a) That only the most ‘severe’ or ‘classic’ autism, often now called ‘Kanner’s Autism’, is ‘real’ autism. This ignores the increased understanding of autism we now have. Do these parents just not know about this (which seems unlikely), or do they really think that all of the doctors, scientists, psychiatrists etc, who have been at the forefront of this change to a ‘spectrum’ view of autism (and that’s without mentioning the adult autistics themselves of course), have got it totally wrong?

(b) That the adult autistics now speaking up, simply because they have the ability to communicate, must therefore have no other problems or difficulties – and thus that we don’t have any ‘right’ to complain. It’s the “If you can speak, you’re not autistic” attitude. This is ludicrous. Firstly, many spectrum advocates aren’t in fact able to speak, or to speak consistently – they communicate wholly or partly through communication devices. Secondly, the ability to communicate, verbally or otherwise, is no guide to where the autistic person is in regards to the rest of their life. Autistic adults vary greatly in their abilities, degree of independence, etc, but even the most ‘self-supporting’ and ‘normal-appearing’ ones have major issues in a world that all too often doesn’t understand, tolerate, accommodate or accept them. And THAT is why we speak up!!

Sadly, the incorrect beliefs of these autism parents stop them seeing the things we are, at least potentially, in agreement on. I would really like to say to them –

“Please know that we too have the best interests of your autistic children at heart, even if we differ in what that ‘best’ is, and what is the ideal way to go about getting it. We have more in common than you think, and despite all the rhetoric and insults that have been tossed around to date, I still believe we can and indeed must work together in the long run, for the good of all autistic people.”

If only this message could get through, then a lot of totally unnecessary aggro could be avoided. Imagine if we all worked together to change government policy and social attitudes, instead of warring against each other. Imagine the power that would be unleashed, instead of it being wasted in mutually destructive conflicts.

Imagine the power we could have together. Imagine, and weep.

The 'Berlin Wall' for Autistic People

A while back, I wrote a post on some of the reasons why it’s difficult for autistics to articulate our experiences, most especially the lack in the English language of words with sufficient power to describe them. Today however, in honour of Autistic Speaking Day 2011,  I’d like to explore another block to our speaking – that of the attitude of others that precisely because we are autistic, what we say has no worth.

The process is one of invalidation. Because we are autistic, it’s presumed we can’t speak for ourselves, don’t know what we want, can’t articulate it if we do, and if we can and do speak, it’s presumed (and we are told) that what we’re saying isn’t valid, because “that’s just your individual opinion” (even when we make plain we’re speaking for a group), and “we know what you need” (better than you do, is the implication), or even that “if you can talk, you’re not really autistic” (despite our real and ongoing difficulties with life).

The resulting practise is one of patronisation. This can happen anywhere with anyone not on the spectrum, but is appallingly common in many disability or autism organisations, I am not going to name names here, but we all know the sort of organisations I mean. The ones who are reluctant to engage with other organisations run by and for adults on the spectrum, who have few - or none - of us on their boards, and who won’t allow us to help in any meaningful way, even when we offer. The experiences quoted below are fairly typical –

 “[I was] told to hurry-up and develop resources to encourage employers to employ adults with autism... while at the same time being belittled daily as the token autistic employee of the same organisation and experiencing micro-management because of "fears". Offering to review contract submissions valued at $x million only to be rejected as not having any relevant inputs or experience, then immediately afterwards getting to be (sadly and unfortunately!) the casting vote on repeat [government] panels that fair-handedly rejected those same contract tenders, and because they lacked precisely the input offered.”

“I've had this happen with [x organisation]. "We want your input, help us make the (preschool, adult vocational center, etc.) better for the autistics we serve, we'd love to have your input and have you work with our kids." Uh-huh, 3x at various meetings/conferences, not so much as a call back. But boy, do they know how to hand out my number when they get a call they don't know how to handle, like moms looking for group homes with openings or social groups in rural areas...”

“Still laughing at [the leader of an autism organisation] using the example of their having "employed" me… [yet all the while] forbidding me from talking to people about AS [when they came in to the office]. But she uses it to say "we are an aspie-friendly organisation".”

“I have been ignored twice by a Job Network that assists PWD into employment.. well they say they do.. but I would like to see proof of their ability. I had some good success when. I worked with one Job Network with helping PWDs… but yes I have been ignored, even when I explained what I used to do. Maybe I sounded too eager or something rather than just crunching people out like numbers…”

Additionally, when some aspies challenged members of one autism organisation committee on their claim to speak for adults on the spectrum, they were told ‘we know best’, and that, even they weren’t on the spectrum, the members considered themselves ‘qualified’ to speak for autistic people, and ‘not in need of input from autistic adults’.

I should note here that these aspies are mostly past forty years of age, some have advanced degrees, all have relevant life experiences or skills, and are articulate and self-aware. I’m not entirely sure what’s going on in the heads of the members of such organisations, but it does seem obvious they see us as ‘incompetent’ and ‘defective’ somehow in our capacities, and in need of their ‘help’ and ‘management’. This generally without looking at the individual spectrumite’s actual abilities or experience – regardless, they saw them filtered through the lenses of their perceptions of autistic people, rather than the reality in front of them. We are objects of pity, ‘lesser than’, someone to be ‘assisted’, but never, ever their equals. And certainly not fit to have an equal voice or (for the most part, there are some exceptions slowly emerging) to play a substantial or meaningful role in their organisations. Note – ‘their’ organisations – because so far, despite their claim to ‘speak for’ us, we are certainly not fairly represented in their management structures – and in many cases, not at all.

This is the ‘deficiency’ model of autism, which many of these organisations are still actively promoting – and given that they are seen as the ‘experts’ on autism, where they lead, the general public, and governments, will likely follow, in how they perceive autism. So they have a huge influence on how we are seen, how we are reacted to, how we are ‘handled’, what rights and opportunities are granted to us. This model has become a brick wall, a blanket to smother us and keep us helpless and silenced. It is I believe our own personal Berlin Wall, and like that ghastly symbol of oppression, it needs to be torn down.

And the only way to do it is to keep on keeping on – keep speaking, keep thrusting our truths and our realities forward whenever we can, keep pushing at that Wall till it crumbles to dust, in the face of the manifest and undeniable truth – that we are human beings, with the same feelings, the same rights, the same capacity for humanity, the same range of abilities, as everyone else. Only then, when this truth is known, will we be accepted as the equals we are.