Thursday 17 September 2015

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'.

[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.