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.
[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.
