The Empty Autism Theory

There’s an idea I’ve been tossing around in my head for some while, which I’ve been calling ‘The Empty Autism Theory’.

It’s about how many neurotypicals view autistics – ie, that they see us as somehow ‘empty’ of all the things that NTs have, whether that be intelligence, thoughts, feelings and emotions, empathy, social sensitivity, a sense of humour, communications worth listening to, the capacity to feel pain or to love our fellow human beings, or even just basic humanity.

So in their eyes, we’re devoid of anything worthwhile, or if we do have anything inside us, it’s a sort of echoing chaos of misery, from which NTs need to ‘rescue’ us. So their job, as they see it, is to ‘fill us up’, to ‘give’ us these things, after which we will be ‘fixed’, and ‘just like normal people’. It isn’t always explicitly framed or stated that way, but the underlying message is pretty clear.

I see it in many areas, in the attitudes of schools, government programs, in books and movies and TV programs about autism, and hence also in the public image of autism. It’s in all the assumptions made about us, eg that we don’t look people in the eyes because we ‘have no interest’ in other people, or that our meltdowns are somehow ‘just random’. It’s in how they don’t bother asking us what we want or need, even if we can talk, because they’ve already decided that we don’t have anything worth listening to, we’re simply to be filled up with whatever they’ve decided we lack.

It’s also evident in the professional language and research, where we’re described as ‘deficient’ in this, or ‘lacking’ in that. We don’t have ‘theory of mind’, or we display ‘weak central coherence’, and so on. The diagnostic criteria focuses almost exclusively on our lacks and deficiencies and abnormalities. It’s even in areas you wouldn’t expect, for instance the infamous ‘research’ project which deemed autistics as ‘lacking in social reputation management’, rather than simply as more honest than their NT counterparts. 

Moreover, this view of autism has been there from the start. Kanner first described us in terms of ‘disturbances of affective contact’, ie we ‘didn’t care’ about those around us. He was the first to suggest the ‘refrigerator mom’ theory of autism which others like Bruno Bettleheim later took up. Even Asperger described us in terms of our ‘deficiencies’ in social/communication skills. 

And then there was Lovaas’ infamous characterisation of us as ‘not fully human’, when he said that “you start pretty much from scratch… with an autistic child. You have a person in the physical sense… but they are not people in the psychological sense… You have the raw materials, but you have to build the person.” Thus ABA from the start was based on the ‘empty autism’ idea – push the autism out of the kid by filling them up with NT-type ‘skills’, and hey presto! No more autism!

It’s evident too in how, whenever autistics challenge ‘warrior’ parents of autistic kids about how they regard and treat their children, we get shut down and attacked – the whole ‘you’re-not-like-my-kid’ and ‘you’re-too-high-functioning-to-know-what-real-autism-is’ stuff is based on the idea that the ‘real’ autistics are somehow ‘different’ (read: empty/deficient) from those of us who can talk, or at least communicate online. Even at the same time as some of them are defending themselves by claiming we’re ‘lacking in theory of mind’, so ‘unable to understand’ where these ‘poor parents’ are coming from! At a very basic level, it’s a profound ‘othering’, a psychological theft of our humanity. 

It’s also evident in the presumption that we simply need to learn how to ‘behave like normal people’, and our problems will all be magically solved. So if we do a social skills course, and we still have problems, it must be because of some resistance or ‘deficiency’ on our part - because, after all, they’ve “done all they can for us”.

Now we know that we’re not empty. That in fact we’re full – full of sensory reactions and unruly emotions that demand our attention and sometimes interfere with our learning, wonder at the physical world around us (even if we’re not budding scientists or computer programmers), joy in our ‘special’ interests, a straightforward honesty, puzzlement at what seems like bizarre behaviours of other people, priorities that don’t include things like small talk, not to mention distress at the way we’re treated, whether or not we can vocalise it. And more. Much more. 

I don’t know what to call the opposite of this ‘empty autism’ theory though. I’m hesitant to label it ‘the fullness of autism’ theory – it’s not only that we’re ‘full’, it’s that we’re both complex and under stress. But I don’t want to call it ‘complex autism theory’ either – as this would undoubtedly be twisted and pathologized and used against us. So I’m not sure what to call it – once again, the language of NTs fails to adequately describe the autistic reality.

What I do know is that, once again, I’m forced into the realisation that nothing less than an entire reframing of the public understanding of autism and autistics is necessary. Only when it’s seen that we are not ‘empty’ of all the things that make people human, can real progress be made. Because as has recently been noted, the public image of autism is based on us in varying degrees of distress, and is thus distorted, the signs of our distress taken as symptoms of our autism, ie as givens with our ‘disorder’. And that stress can be traced back directly to the Empty Autism theory, and the resulting misunderstanding and pathologizing of autism and autistics.

And it’s time for all that to stop. Time for the empty autism theory to be laid to rest, and for our humanity to be seen and accepted, and for our part in the full range of human diversity to be embraced. Our very survival depends on it.

Autistics, Research and Assumptions

It seems that every time an autistic, especially a non-verbal one, pops their head up, maybe publishes a book about their life, revealing themselves as a 'real person', complete with a fully functioning intelligence, they are described as 'atypical' of autistics in one way or another by the supposed 'experts', when what is really meant is "they don't fit the theories we have about autism". You wonder how many of us have to come out of the woodwork before they finally accept that their ideas about autistics (especially non-verbal and/or so-called low-functioning ones) are all wrong.

Even Temple Grandin, when she wrote her first book, was considered 'atypical' of autistics for being able to lie, play imaginative games, and have friends. One academic referred to her first book as 'ghosted', implying she hadn't written it herself.[1] Some autism 'experts' even claim that being autistic means by definition being unable to have self-awareness[2], and so if we do demonstrate it, this means we're not 'really' autistic (and hence can be ignored). This is similar to the criticism autism advocates sometimes get, when we're told that if we can speak, or write, or live more or less independently, then we're not like the 'real' autistics (and hence can be ignored).

An interesting book I've been reading lately, called Autism and The Myth of the Person Alone, by Douglas Biklen, a professor of Disability Studies, challenges a lot of these ideas. It's provided me with much food for thought, including how much I have in common with non-verbal autistics, those who are generally deemed 'low-functioning' and 'non-intelligent', something I already knew really, but have had confirmed. However it's the approach he took to his research that especially interests me.

Rather than assuming he already knew it all about autism, he took the radical step of actually interviewing autistic adults, non-verbal as children and all previously deemed intellectually handicapped, who had learnt to communicate by typing, and most of whom were still non-verbal. In other words, he first found out what autistics themselves think and say about themselves, and only then formulated his theories. The result is a book that challenges a lot of the prevailing ideas about autism, and is a notable exception to most of the professional literature about autistics.

Unfortunately, most autism researchers seem to take the exact opposite approach to Professor Biklen. He points out that the 'deficit model' prevails in autism studies - ie, researchers formulate theories based on the 'normal' perspective, and then test it on autistics, "in effect saying: What does the person labelled autistic lack that the 'normal' person possesses?"[3] This book was published in 2005, yet this approach, unfortunately, still prevails, ten years on.

An classic example of the deficit model at work is in this experiment. The researchers recruited a group of 'high-functioning' autistics, and matched them for age, gender and intelligence with NT controls. They gave them all a sum of money, and then presented them with a series of choices, asking them if they wanted to contribute some of the money to a pre-set charity (UNICEF). This was done in two rounds, once alone and once with an unfamiliar observer.

They found that NTs were inclined to contribute more to the charity when the observer was present, especially those who donated far less when alone. The autistics, however, donated the same or even slightly less when an observer was present, regardless of how generous they were when alone. The researchers concluded that autistics "have a specific deficit in taking into account their reputation in the eyes of others".

This "conclusion" is riddled with assumptions, starting with taking it as a given that we have a 'deficiency' of some sort, and all the researchers have to do is find it. They then assumed that the results meant autistics weren't able to envisage what others thought of them and consequently change their behaviour to impress, as the NT controls did. Thus it takes our supposed lack of theory of mind as a given, even though this is questioned by many (including Biklen), and merges two assumptions - a) that we don't know others are thinking about us, and b), that if we did we'd change our behaviour as a result.

So they assume their results mean the autistics lack something the NTs have, when it seems to me it could just as well mean the autistics having something the non-autistics don’t – eg the ability and willingness to evaluate the worth of something on its own merits, regardless of what others may think of us for how much or how little we donate.

Perhaps the most curious assumption though, is that the researchers obviously regard it as a good thing ("pro-social" and "healthy") to pretend to be more generous than you really are - in effect to lie and pretend - in order to "manage your reputation", ie to boost your standing in other people’s eyes! From an autistic’s point of view, this seems very strange, and even ludicrous.

The research was of course biased from the start. The very language used demonstrates that - the NT controls, or NTs in general, were repeatedly referred to as "healthy", while the autistics were referred to as having a "disorder" or "deficit", or as being "impaired", multiple times also. Moreover, the working hypothesis was that "social reputation effects are selectively impaired in autism". They also referred to the "incentive to improve one's social reputation" as "uniquely human" - and then say we don't have this incentive. Implication? We're not fully human. We couldn't win.

I don't feel anything was "proven" by this research, except the researchers' bias. It could be the autistics in question understood that others think about them, but failed to see why that should influence their actions. Maybe at least some of them even knew that you're 'supposed' to present yourself in certain ways, to have others think well of you, but preferred to be honest. It's also possible that they were simply made too anxious by the presence of the observer, a stranger, to consider anything of the sort. (I could have had any of these reactions, on different days).

All research like this really proves, of course, is that they still aren't asking us what we think, or why we do the things we do. If they did, like Professor Biklen, they might come to some radically different conclusions. They might even realise just how blinkered and NT-centric their thinking has been.

Because the prevailing assumption, and not just from autism researchers either, but also from the general public, is that when we do or say things, it's for the same reasons an NT would do those things. So if an NT would do 'x' action only out of selfishness or a lack of caring about others, then when we do the same thing, it must mean we are also selfish or uncaring. This, to me, says more about the researchers' and other NTs' lack of 'theory of mind', than it does ours. They truly, truly don't understand us, or where we're coming from.

Is it really such a radical idea for them to actually ask us why we do things? Professor Biklen didn't think so. We need more like him, willing to actually go 'straight to the horses mouth'.

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[1] Biklen, Douglas (2005). Autism and The Myth of the Person Alone. New York and London: New York University Press, p 48.

[2] Grace, Elizabeth J., p96, 'Autistic Community and Culture: Silent Hands No More', in Loud Hands: Autistic People Speaking, Julia Bascom (ed) (2012), The Autistic Press, Washington DC, USA.

[3] Biklen, Douglas (2005). p 46.

What IS Autism, and why do we differ so much?

I’ve been thinking a good deal lately about what exactly autism is, and why it is that, despite there being a whole range of things we have in common, we differ so much in how we express that autism. As the saying goes ‘if you’ve met one autistic, you’ve met one autistic.” But why is this so?

There are several obvious superficial reasons for our differences, including gender, age cohort, background, co-morbid conditions, and simply individual personalities. Yet it seems to me that none of these truly explain them. The other obvious difference is in our functioning levels – and here, I believe, we get somewhat closer to the crux of ‘what autism is’ – and yet miss it completely.

Let me explain this further. Through my lived experience of autism and several years of keen observation, reading, and listening to my autistic peers, I have come to the following conclusions :-

1) There is only ONE autism. That is, all the different labels or categories of autism, don’t really exist. There is only one condition, and you either have it or you don’t.

2) Autism is not a set of behaviours, but a qualitatively different neurological pattern. This pattern is inborn, immovable, and largely misunderstood. It means that the way we think, process, act, react and express our emotions, and how, where and what we focus on, is radically different to that of NTs.  

3) This different pattern is the one thing all autistics have in common, the ‘base line’ of our autism. The apparent differences between low and high functioning, are largely due to how well we are able to communicate with others. Because –

4) The core or fundamental autistic state is a non-verbal one, probably picture-thinking, reacting to the world viscerally, experiencing it as a wash of sensory feed, focussing on physical objects or our inner images/feelings, far more than on other people. This is where we all seem to start from, as young children. As we grow up, some of us are able to acquire verbal language, through which we become more aware of others, and start to learn concepts and skills. Even as adults, many autistics (including me) still think predominantly in images or surges of feeling, and have to ‘translate’ our thoughts into words to communicate with others. We can also ‘lose our words’ under stress. Nevertheless, it’s pretty obvious that it’s those autistics who have the most translating ability, ie are able to more easily acquire/hang on to/use oral communication, who are most likely to be labelled high-functioning or Aspergers rather than low-functioning or classic autistics. ‘Non-verbal’ equals ‘low-intelligence’, in most people’s eyes. Yet often when these autistics do finally find a way to communicate – eg, via computerised speech devices – they are frequently revealed to have a perfectly functioning intelligence, thank you. (And are often pissed off at those who think otherwise!)

So what, you might ask, about those kids who not only have no language, but lack any other sign of ‘normal’ development, eg aren’t toilet trained, can’t dress themselves, scream constantly, etc? My gut feeling is that again, this is largely due to the communication barrier. If you can’t understand what people are saying to you, how can you grasp what they want of you, in regard to (for example) using the toilet rather than filling your pants? If you don’t even realise that communication is possible, how do you express your pain, except by screaming? Even those of us at the high-functioning end of the spectrum, especially as young children, have had the experience of knowing something, but not realising it needed to be communicated to others, and even when we did realise it, of not having the words to do so.

I admit I am not a scientist or doctor, or researcher of any kind, and my theory might sound strange or even controversial to many. Yet there is some evidence to support it. Consider, for instance, the experiences of a friend of mine, whose child is one of those lower-functioning autistic children – nine years old and non-verbal, not toilet-trained, etc. A while back, he started a course of (highly modified) ABA therapy. He is now able to use a communication ‘book’ to get across his needs (and like many children, persistently requests candy for breakfast, even though he never gets it!), and now has his first echolalic word – “No!” What fascinated me though, was her comment shortly after the therapy started, that he “didn’t seem to realise before that he could communicate with others”, that this idea was a revelation to him. Also, more recently, she has said she feels his problem with understanding spoken language is due to that “when we speak to [him] he most likely has to translate this to pictures or to whatever way his brain interprets things. On a good day, some of the message might make it through, depending on how familiar he is with those words in that order. On a bad day… none of the message will make it through. It will be a garbled mess.”

Or consider the chapter in the Loud Hands anthology, by Amanda Baggs, where she talks of how the verbal abilities of autistics like herself are “rarely stable… [it’s like] climbing a cliff.. we climb up to able to talk or understand language, and the moment we get distracted we fall back down to where words don’t exist, and have to climb up again, if we can.”[1] She implies that the more ‘rational’ and ‘verbal’ autistics don’t experience this cliff, but I’m not so sure. I think we are very likely to fall down it when we’re exhausted, ill, under severe stress, close to meltdown or shutdown or sensory overload, or already in it. We might also let ourselves slide down it for a while when alone and relaxed, perhaps communing with nature, or simply engaged in our favourite activity, temporarily giving up the struggle to express ourselves in words, and just ‘being autistic’.

I have no idea why some can ‘translate’ or ‘climb the cliff’ well, and others can’t, what difference in our brains dictates this. It’s something that I believe needs far more research – only, as the ‘experts’ seem to be far more focussed on finding cures and/or discovering more ways in which they can ‘prove’ the autistic state is an inferior or pathological one, rather than on things that might actually help us, I’m not holding my breath that it will happen. I do however feel it’s a line of enquiry which might prove helpful for all autistics, but most especially the non-verbal, if someone did find out the reason.

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[1] Baggs, Amanda, pg 233, ‘Untitled’, in Loud Hands: Autistic People Speaking, ed by Julia Bascom/The Autistic Self-Advocacy Network, 2012, The Autistic Press, Washington DC, USA.