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.

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