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.
