Friday, 15 March 2013

About Those Functioning Levels

One criticism that frequently gets flung at us ‘higher-functioning’ autistics, especially autism advocates, is that we are “not really” autistic, because we are “not like” the non-verbal, faecal-smearing, constant-meltdown-throwing ‘lower-functioning’ ‘real’ autistics. I am personally becoming more and more uncomfortable with this criticism, and the division it seeks to encourage, for several reasons.

Firstly, because it discredits our experience, belittling all the struggles and hardships and misery we have suffered and continue to suffer, effectively saying they don’t exist or ‘aren’t all that bad’. It also flatly ignores the findings of a whole generation of researchers, scientists, doctors, psychologists, psychiatrists, etc, etc, who have clearly defined that autism is a wide-ranging spectrum, with a whole range of manifestations, all of which set us distinctly apart from neurotypicals. We have more in common, in a whole range of ways, with the so-called ‘lower-functioning’ than we do with these neurotypical critics who are so eager to exclude us right off the spectrum and back into the “no-person’s land” of the undiagnosed, that so many of us wandered lost in for much of our lives.

Secondly, the critics often ignore that they are talking about children, many of them very young children at that. They somehow assume that ‘low-functioning’ children will never become more than what they are now (or will only do so with heaps of expensive, time-consuming and often harsh ‘therapy’). But it’s impossible to say how much or in what way an autistic child will develop in the future, any more than you can fairly say what a young NT child’s true potential is. You can only allow and assist the child to grow, to develop their full potential, whatever that proves to be.

Moreover, the division between ‘high-’ and ‘low-functioning’ is really not as clear as they think. There’s no neat and tidy demarcation line, the one side of which we are ‘okay’, and on the other – something else ‘not quite human’. Many an adult autistic would have been classed as ‘low-functioning’ as a child, if a diagnosis had been possible then, or in some cases actually was. Some were non-verbal, late to speak or to speak properly (including me), weren’t toilet-trained till way past the ‘normal’ age, or were in other ways ‘behind’ in their development. Some are still non-verbal, or sometimes use communication devices, or have other communication problems. Some still have problems with toileting, self-care or ‘life skills’ and need daily support, or they have dietary, sleep and/or executive dysfunction problems, or they may look independent but in practise (as I do) rely heavily on their family for ‘interpretation’ of the world, and/or practical assistance. Many adult autistics still stim (if only in private), or find it an almost daily challenge to prevent or control their meltdowns. Most of us just struggle with life, period. We all feel the need for more support, even the ‘high-functioning’. Just because a person can join social media, write a blog, or even a book, doesn’t mean they are ‘fully independent’ - whatever that means anyway, in a world where we are all to some degree ‘inter-dependent’. Autistics like Amy Sequenzia, Amanda Baggs and Carly Fleishmann are prime examples of supposed ‘low-functioning’ autistics proving that just because someone is non-verbal, or only partially verbal, this doesn’t mean they are lacking in intelligence. But these critics see our writings out there, or in some cases hear us speak, and assume we are fully ‘independent’ and ‘high-functioning’, and always have been. Not so.

But my biggest problem with people trying to drive a wedge between low and high functioning is that when they say things like “Oh, but you’re not like those kids”, or “but those autistics have real issues that have to be dealt with by intensive therapy”, what I hear is “It’s okay for us to abuse those autistics, pour bleach down their throats, give them dangerous chelation therapy or electric shocks, forcibly suppress their stims, make them spend all day in strict ABA therapy with hardly a break, tie them down or lock them in small cupboards for hours at a time, etc, etc, because they’re not real people, therefore it doesn’t matter what happens to them, so you better not identify with them, or by golly we might just have to re-classify you…” It’s a silencing, a forced and arbitrary separation, a ‘divide and rule’, a not-so-veiled threat to keep out of the way ‘or else’. Or else we might end up being treated the same as those ‘not-functional’ others, the ‘worthless’ or ‘not-truly-human’ ones.

But too many of us already HAVE been treated ‘like that’. We have been institutionalised, had our hands forcibly held down, punished for ‘weird’ or ‘anti-social’ behaviour, given electric shocks, been bullied and abused, been forced into various and sometimes harmful ‘therapies’, been scolded, yelled or laughed at, or simply ignored when we tried to communicate our reality and experience. And some of us have seen it happen to younger versions of us, as Amanda Forest Vivian did when she interned at a school for autistics. In the Loud Hands anthology[1], she tells how she watched uncomfortably as autistic children, some verbal, some not, consistently had their autistic behaviour suppressed and punished. One boy, for instance, when he stimmed watching TV, would be hauled into an office and have his head held down while mouthwash was forced into his mouth. Others were grabbed and scolded when they attempted to skip, hop, jump or do anything but walk in a stiff, rigid line. They were told their hand movements were ‘silly’. Those who could talk but didn’t do so ‘appropriately’, were scolded for this too. And so on. As she finally concluded, “Autistic people do not get abused because they are low-functioning, they get abused because they do weird things.[2] (My emphasis.)

We are ‘weird’ by ‘normal’ standards, and therefore vulnerable. We are ‘different’, and therefore vulnerable. ALL autistics are vulnerable. All of us have far more in common with each other than we do with NTs, no matter what our supposed ‘functioning’ level. As Amanda further points out, “If you were in the wrong place at the wrong time, the wrong age, the wrong functioning level, this could be your life.”[3]

And if we do not stand in solidarity with the voiceless, if we do not protest their mistreatment, it’s likely no-one will, and their abuse will continue unabated – because they are, and will continue to be, seen as ‘worthless’. And no-one will then protest our treatment either, if we should happen to have a breakdown or burn out, or simply get ill, and can’t ‘function’ as well as we used to. As long as ANY autistic is treated like this, is classified ‘not properly human’, we are all at risk.

But we should protest their oppression not only because it might include us. We should protest it because inside each so-called ‘lower-functioning’ individual is a human being, with their own thoughts, feelings, wants and desires, which we can understand better than any NT ever can. These are human beings who have the right to be themselves, to be respected, and to be treated with humanity and dignity. Let’s not forget that, or let others ever forget it either.

[1] Amanda Forest Vivian, ‘They Hate You. Yes, You.’ Pgs 124-127, Loud Hands, Autistic People Speaking, ed by Julia Bascom/ASAN, 2012, The Autistic Press, Washington DC, USA.
[2] Amanda Forest Vivian, as above, page 127.
[3] Amanda, page 127.

Monday, 11 March 2013

The People of the Eye

Lately I’ve been reading a very interesting book called ‘People Of The Eye’[1], a collection of life-stories by New Zealand deaf people.

Due to a family connection, I’ve known a deaf woman since I was in my teens and she was a child. Communication with her and her younger sister (also deaf, who tragically died in her twenties), though limited to interpretation through their mother, gestures, lip-reading and the few signs I know, soon showed me that ‘deaf’ did not mean ‘dumb’. They were lively, intelligent girls, with a great sense of humour. On one occasion, for instance, the younger girl asked me through her mother what I’d had for dinner. I couldn’t remember the sign for chicken, so instead bent my arms and flapped them like chicken ‘wings’. They almost rolled around the floor laughing! I also knew, through overhearing conversations between our mothers over the years, some of the deaf ‘issues’ of the day.

However it wasn’t till reading this book that I began to understand the depth of the problems deaf people in NZ (and elsewhere) have faced over the past century, and continue to face.

Briefly, the story is this. In 1880, the International Congress on Education of the Deaf passed a resolution to stop using signs to teach Deaf students. Being deaf was considered a ‘deficient’ or pathological state, and it was decided it was best for deaf children to learn to lip-read and talk, ie make them as ‘normal’ as possible. Speech, they declared, was vastly ‘superior’ to signs, and therefore the latter must be eliminated.

As the first School for the Deaf in NZ didn’t open till that same year, this approach, known as ‘oralism’, was used from the start. Older generations of NZ deaf were punished for using signs, and made to feel ashamed of it. Nonetheless, those children who did know some signs taught each other when teachers weren’t looking. As you might expect, the most profoundly deaf never learnt to speak well (my family friend included) as they simply can’t hear what they are supposed to be reproducing. Eventually as adults they began to form their own Deaf communities, where signing was the main method of communication, as this was the one most natural to them.

The deaf being considered to be ‘incapable’ of any work other than the most menial, vocational education was the focus in their schools, and this, together with the huge amount of time spent on oral speech training, meant the standard of education suffered. Many older Deaf people have been limited in their academic abilities and achievements as a result of this, and it’s only in recent decades that some younger Deaf people have made it to university. (I speak here of the NZ situation of course, this book makes it plain that this doesn’t apply in other countries, especially the US, and many NZ Deaf in this book express amazement and envy of the support American Deaf enjoy, and their educational achievements.) From the 1960s on, many deaf children began to be mainstreamed in regular schools, which was done with good intentions, but as few teachers had any idea how to support their deaf students (eg by simply remembering to talk facing them), and they had no interpreters, their educational achievements remained, not surprisingly, generally low.

It wasn’t till 1979 that a form of signing was allowed in deaf schools – and even then, it was not NZSL, but a method known as ‘Signed English’ or ‘Total Communication’, which corresponds ‘word’ for ‘word’ with spoken English. This method however is not natural to the Deaf, true sign language being vastly different to spoken English. NZSL interpreters didn’t begin to be trained till 1985, and the number of them is probably still small. NZSL was finally allowed in Deaf classrooms in 1993, the first Deaf teacher of the Deaf qualifying in 1992. Things are slowly changing, but many Deaf people still feel far more comfortable with other Deaf, simply because communication is so much easier. They have their own clubs, social events, sports, and even Deaf Games; in short their own culture and community, and most definitely do not regard themselves as ‘disabled’ or ‘handicapped’. The Deaf people in this book express pride in their way of being, see nothing ‘wrong’ with being Deaf, and were not bothered at all when some of their children turned out to be Deaf. They are proud, self-reliant, and amazingly strong, worthy of admiration and respect.

The ‘pathologising’ of one’s condition, one’s difference seen as ‘inferiority’, attempts at a forced ‘normalisation’ or at least outward elimination of this ‘inferiority’, restriction of hand movements, being educated in a way that is inharmonious or injurious, being treated as though one is ‘stupid’, insistence on communication by methods foreign and unnatural to one’s being, and which moreover in most cases can never be fully learnt, the slow forming of communities ‘away from normal eyes’, the equally slow formation of culture and pride in one’s own natural way of being….

Does any of this sound familiar to you spectrumites?!!?

[1] Rachel McKee, People of the Eye – Stories from the Deaf World, 2001, Bridget Williams Books, Wellington, NZ.

Sunday, 10 March 2013

Do Neurotypicals Hate Us?

The question has to be asked – do NTs actually hate us?

You have to wonder, all the barrage of vitriol that is so often thrown our way. The ‘cure or kill’ brigade with their ‘autism as monster’, ‘autism as stealer of children’, ‘autism as fate worse than cancer’, etc, etc, ad nauseum propaganda, certainly seem to hate us. The autism ‘experts’ with their “if autistics do it, it’s pathological, wrong and bad, if NTs do it, it’s normal, good and okay” bias, also often give the impression of hating us, behind their cool masks of supposed ‘objectivity’.

There are ‘hate autism’ parents and their organisations who spew fear and loathing at us every chance they get. Bluntly calling autism an ‘epidemic’ of ‘brain damage’, they furiously label autistic advocates as ‘sad and deluded’, ‘attention seekers’, ‘nuisances’, a ‘noisy minority’ who are ‘hijacking’ or ‘trivialising’ autism, etc, etc, and of course as ‘not really’ autistic because we can talk (and therefore can’t speak for the non-verbal, though how then, those who aren’t autistic at all can, defies logic), even claiming that we are somehow ‘out to harm’ the ‘real’ autistics. I can think of at least one prominent ‘anti-autism’ parent (who shall go unnamed) who actively trolls autism websites, spraying his hate messages – which includes homophobia as well as neurophobia (hatred of autistics) – around at every opportunity.

There’s also a compliant media, who for the most part tamely rehashes all this negativity anytime the ‘autism issue’ comes up, the many professionals who make no effort to understand or offer any meaningful support to their autistic students, patients or clients, employers who refuse us even the smallest accommodations, workmates who never miss a chance to dump on us, the family members of some of us who react angrily to just about everything we do, and last but not least the general public who either don’t understand or don’t care or just seem to want us to go away, disappear into some wormhole in space… Need I go on?

I feel there’s more than one thing going on here. One is classic xenophobia, a human reaction to anyone ‘different’ and/or ‘strange’ which has been around since our ancestors lived in tribes in caves, and had to be wary of any strangers who might muscle in on their hunting territory, or even attack, kill, rape or enslave them. And autism – at least as a diagnosed condition, in large numbers and hugely visible – has only been around for a little while. So there’s that factor, which can eventually be overcome, just as non-acceptance of gays has been largely overcome, at least in the Western world, at least partly by gay people coming out in fairly large numbers - and thus becoming ‘familiar’, no longer ‘strangers’. We can become ‘familiar’ too, in time.

Another factor is a failure of NTs to understand themselves. Their responses to the world and other people are largely subconscious, automatic, intuitive and so quick they don’t even realise it’s happening, they ‘just know’ things. And because they don’t even realise there is a process happening, they don’t seem to get that it isn’t happening for us, that we’ve had to learn consciously, intellectually, and slowly, what they take for granted. Instead, they assume we know the ‘rules’ and are deliberately flouting them, being rude, arrogant, selfish, insulting, etc, etc; and react angrily to that.

And yet a third factor is the belief of many autism parents that they are entitled to a ‘normal’ child, and that it’s a huge affront, a violation of their ‘rights’, almost a crime in fact, for them to have one that isn’t. This is not an inference by the way, many of them outright say so, in very forthright terms that go way beyond ‘grieving’ into ‘grievance’. Their concern seems to be not for the child’s welfare, but for themselves. It’s as if they have this expectation of what their kid should be, how their child should reflect well on them, boost their social standing – so if their kid looks unlikely to ever be a cheerleader or football star, be ‘popular’, go to a prestigious (or any) university, bring home trophies, etc, etc, in short, if they have a kid they can’t show off, this is a ‘sin’ in their eyes. How this ‘I have a right to a normal child’ belief evolved, I’m really not sure, but those who hold this view consider themselves not only entitled to such a child, but entitled to do anything at all that will change their ‘deficient’ or ‘abnormal’ child into the one they believe they should have had from the beginning. They swing into action, blasting the child with every weapon at their command, and blasting too anyone who might have a different view of autism. They seem to hate autism because it disrupted the life they believe they are entitled to.

One final factor may be simple ‘demonisation’. Every society sooner or later creates a Bogeyman - a whipping boy, scapegoat, hated ‘other’, Foul Thing, an Evil Enemy who sole purpose is to unite folk against it. I believe to many Big Bad Autism has become this kind of ‘nasty’, a thing to be resisted, fought, overcome, obliterated, crushed, smashed and wiped out of existence, no matter what effort of time, energy or expense that entails. It’s the Big Bad Bogeyman who threatens education/health/insurance/etc budgets, ties up resources that some believe would be better used on ‘real’ people’s needs, ‘intrudes’ into and complicates ‘normal’ people’s lives unbearably. That there might be anything worthwhile to autism, or that autistics should be allowed to simply be autistic, is akin, in these people’s eyes, to saying ‘Hitler was a nice man’.

Wow. When I put it all together like this, you truly do begin to wonder… Yes, thankfully there are many NTs who aren’t like that, who accept us as we are, who are even our allies, for which I say a big ‘Hallelujah! It’s just that there are so many more who aren’t, who spread these messages of doom and gloom and hatred… it’s mind-boggling. However! Call me a hopeless optimist – but I do believe that most of this is due to simple fear and total ignorance. If only we can overcome that, educate people, we will have won at least one of the many battles facing us, and hopefully gained at least some new allies in our fight for human dignity and equality. For sure, right now we’re so far ‘out there’, getting such bad ‘PR’, that we’ve got little to lose by going for it.

Saturday, 2 March 2013

Autistic People Are

Autistic People Are Beautiful.
There’s a kind of purity of soul about all autistic people, even the ‘grumpy’ or ‘difficult’ or ‘further-out-there-than-most’ sorts. There’s a kind of integrity about us, by which I mean a wholeness, a directness of purpose, a solidness of the spirit; that exists even when it’s covered over with layers of ‘adaptation’ and ‘social skills’ and the often deep scars from the damage that the world has done to us. We simply don’t have it in us, it seems, to compromise that. And I’m darned if I see why we should. It’s just beautiful.

Autistic People Are Honest.
This is part of that beauty – an unswerving and totally inborn honesty, that often sees us get into trouble for being ‘too’ honest, but which is as natural to us as breathing. Yes, it can sometimes mean we come across as rude or insulting – usually (though not always) without realising it, but it is still a beautiful thing anyway. NTs should take some lessons from us. Honesty often is the best policy. And of course it means we usually have a high degree of integrity and reliability as well, both in our personal lives and in our workplaces.

Autistic People Are Funny.
Despite what some people seem to believe, we have a great sense of humour. I have has more genuine laughs in the company (online or IRL) of other autistic people, in the last few years since starting to associate with them, than I had in the previous twenty or thirty years. It’s true we tend not to find some things funny, eg sexist, racist jokes, or jokes that put people down (having been the victim of them ourselves, too often), and we often don’t react to NT jokes, sarcasm, etc, because we’re not sure if they are joking or not, but we can and do crack plenty of our own jokes. Reading humorous threads online has often had me literally falling off my chair in laughter!

Autistic People Are Compassionate.
Yep, folks, despite all rumours to the contrary, we do have empathy. And sympathy, and compassion, and whatever else you’d like to call that ‘fellow feeling’, when you realise something’s up with someone, or something bad has happened, and you respond to that with feeling of your own. We do it. We may not know how to do it in the manner an NT would recognise, or in ‘socially acceptable’ ways, but nonetheless, we do do it. In fact sometimes we are so overwhelmed by our empathic reactions, we have to shut down or leave. Not what people expect, and we can be condemned for this too, but the feeling is there. And amongst ourselves, the compassion, empathy, sympathy, is displayed frequently and freely, even if only by a sad face icon or ‘I’m sorry to hear that’ post.

Autistic People Are My Friends.
I’d given up trying to have friends before I discovered my autism. It was simply too hard, too fraught with misunderstandings and rejections and convoluted interactions that left me feeling bewildered and stressed out. But when I found other auties… suddenly, all that went away. If one of my autie friends doesn’t like something I did or said, they say so. I know exactly where I stand, there are no undercurrents, no ‘hidden agendas’, no unspoken demands or expectations to trip me up. I can breathe easily, speak my mind, let down my guard and trust again. I can speak the truth about my life and my experiences, and find understanding and support. Sure, I like some better than others (and a very few not at all), but on the whole, autistic people are my friends, and I hope they will be so for the rest of my life.

I love autistic people.