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.

Something I hope will be helpful for teachers (and parents) of autistic kids

A GUIDE FOR TEACHERS OF AUTISTIC STUDENTS

I wrote this guide a while back, for an autistic group, it's recently occurred to me that many others might find it helpful. Feel free to print it out and/or share it online (with acknowledgements and/or a link to here please!) wherever you think it might be useful.

1) Don’t expect us to be Neurotypical, or ‘normal’. Autism is fixed at the genetic and neurological level, we can no more change it than we can fly. Pressure to be ‘normal’, even if superficially successful, only causes us stress.

2) Presume intelligence. Difficulties with social interaction, verbalisation, auditory processing, information processing and sensory overloads can sometimes lead others to think we are ‘stupid’. We aren’t.

3) Consider our sensory needs. Most of us have very acute senses, meaning things like fluorescent lights, glare, strong smells, and noisy classrooms can cause us huge stress, hindering learning and possibly even leading to meltdowns. Even small accommodations, such as allowing us to wear caps and sunglasses inside, can help.

4) Don’t force eye contact. In autistics, lack of eye contact is not a sign of dishonesty. Many of us simply find eye contact painful, invasive or simply irrelevant. Also some find it difficult to look at someone and listen to them at the same time.

5) Accept that our body language and emotions are different. Many of our emotions don’t seem to ‘reach the surface’ very well, and when they do, are not likely to be the ones considered appropriate or correct, or correctly expressed. This doesn’t mean we don’t have any feelings, simply that we have different ones.

6) Accept that we don’t mean to be rude. We lack any instinctive understanding of social rules, and so inadvertently trespass them. If we are disruptive, it’s best to quietly take us aside, and tell us the rules explicitly. It’s also good to tell us when we do something right, so we can add it to our social ‘repertoire’.

7) Keep change and disruption to schedules to a minimum. We don’t cope well with sudden changes and lots of disruptions. Give us as much advance notice as possible of changes, including transitions from one lesson activity to another.

8) Isolate our meltdowns. Meltdowns are NOT tantrums, but a sign that we are stressed to the point of overload. It’s best to get us as fast as possible to a quiet, isolated, dimly-lit space – and leave us there till we calm down. DO NOT TALK to us during or just after the meltdown, it will just make things worse.

9) Avoid slang, or explain it. We are very literal thinkers, and if we don’t know expressions, can be confused by them. If you tell us to ‘hop to it’, we probably will! This is sometimes assumed to be ‘cheeky’ behaviour. It isn’t.

10) Focus on our strengths, not our weaknesses. We may be lacking in social skills, but are often very good at other things (and no, it’s not always computers!). Our ‘special interests’ can often be used to aid and focus learning. Moreover, a positive attitude on the behalf of the teacher can reduce the chances of us being bullied.

by Penni Winter