If you ever went to a Greek high
school and followed what is called the “theoretical” direction, which you
probably didn’t, you would have been exposed to the great wisdom of the Greek
philosophers to the point of several headaches. And not because they are
important and awesome, but because they are the studying material for the
national exams that gives you access to university.
That’s pretty much how I spent my
last two years of high school in Greece, me and almost every other adolescent
my age. As an aspie that made no sense whatsoever to me, but luckily the Greek
philosophers were extremely interesting, so I was tempted to read them.
Otherwise I would have failed at my exams and would have made it as a political
statement against the system, because that’s the kind of adolescent I was.
So why are Greek philosophers
interesting and relevant to the subject of this blog? Because they, well, not
all of them but Socrates did, always started their discussions with a
definition. A definition about what they were going to talk. In fact in Plato’s
“Symposium”, they spend more time defining things than they spend actually
discussing them and that’s why that book was freaking interesting. Because if
you give me a definition, then we have something to work with. True, the
discussion is probably going to go down like it did in the Symposium because I
am going to pester you more about why you are defining what you are defining
the way you are defining it rather than actually talking about the defined, but
as you are going to find out I am only going to do that because you and I, and
dare I say every person on the spectrum, use the same words as NT’s do express
very different things. And consequently, we never understand each other. It’s
merely a language problem. Merely though in this sentence is an understatement,
because our language wouldn’t be this different if our internal perceptions
weren’t that different. Therefore our very deep internal differences are
reflected in our language use, as only natural. So, without further ado, here
is what I mean when I use some words that you are going to stumble a lot upon
in this book.
And yes, I am going to attempt to explain a very complex and emotionally charged word/concept: Autism. As you probably already know, this word is very, very, very
difficult to define. I should know, I am doing a discourse analysis of the
different contexts that word means different things to different people. For
parents of children with “low-functioning” autism (I HATE that term but it’s
the easiest way for you to understand which parents I am referring to) and for
doctors who diagnose autism at 18 months of age, autism is perpetual social
anxiety, communication challenges, acute sensory difficulties, children that
will NEVER be verbal, potty trained or independent in their lives. God knows
how many unfortunate parents have heard that description of autism for their
children and how many doctors DAILY still say, “I am really sorry, your
son/daughter is autistic”.
On the other hand, there is now
(thankfully) a growing community of parents, people on the autism spectrum and
professionals that do not share that approach and present autism as a positive
thing, emphasise on the assets and argue that they overcome the challenges. And
there is of course a number of people that jump from the one end to the other,
from the despair of the medical disability to the hope that “something can be
done”.
I don’t subscribe to either of
them. Admittedly I lean towards a more positive approach, but I try to maintain
a generally positive attitude about life and autism is part of life. But if you
ask me about myself, I am not awesome because I am autistic. I am awesome
because I am awesome, end of story. I don’t need to present my autism as my
awesomeness because, from what I came to understand, that’s sugar coating the
fact that autism is a disability. And I don’t like that idea any more than I
like the idea of disability in general. Autism is NOT a disability. Autism is
NOT an asset either. Autism just is. What you choose to make of it and how you
choose to see it, is up to you entirely. If you were to say “I think that
autism is an acute brain dysfunction that can only be cured with
hospitalization and isolation from the world because it can be EXTREMELY draining
to the lives of those around it”, I would be fine with it. You know why?
Because you would have started the sentence with “I think”. And you can think
whatever you want, that doesn’t make it true or an accurate definition. So what I would say to parents of children with autism is: “Let’s all
help the child use his/her autism as an asset”.
So what is autism then? If you
take a look at the DSM-V, you will find “Autism Spectrum Disorders” defined as
difficulties in social communication, difficulties in social interaction and
sensory issues. But DSM is a diagnostic manual and as such it doesn’t say what
autism IS (even though it claims it does), it says how autism can be SPOTTED
and DIAGNOSED. Those are two different things and the realisation of that is
critical if we are going to talk about autism any further in here.
Autism is looking at the tree
before you see the forest. If you are autistic you are going to deduce that
there is a forest in front of you because you will have noticed that there are
a lot of trees in a row, not expect to see trees because you saw something that
looked like a forest in the distance. It probably doesn’t make much sense
stated like that, so see it like this: an autistic person’s view is like a
spying glass. Round, focused and limited. I am going to notice every detail of
the wings of the butterfly that sits on the first flower in the beginning of
the forest before I move to the second flower, the third flower, the first
tree, the second tree and so on, analysing EVERYTHING I see as I go on. Sure,
it will take me years to go to the end of the forest, something that you can do
in an hour, but by the time I get there, I will have the knowledge necessary to
right a freaking PhD thesis about that forest. All you will have seen is a
bunch of trees and plants. But you will have gotten the job “done” if the job
was “get to the end of the forest”.
A good way to understand an
autistic person’s view of the world is by comparing it to a blind person’s. It
has been often stated that autism is “mind blindness” and, in the way I am
going to use it, I think it’s a quite accurate description. When a blind person
enters a new room, they have to go around it touching everything, so that they
will know where everything is. After having touched everything, they are able
to form a mental image in their heads of where is what and as a result be able to
move around in that space. That is what happens in EVERY SITUATION in the life
of a person with autism. We see the little parts and then need time to put the
puzzle together. If the pieces fit and we haven’t missed anything that is.
Now, two variables are important
to that: TIME and SEE. If I can’t see something, it doesn’t exist. Before I
moved to UK I had a fiery argument with my mother about whether or not I am
going to pack really heavy stack of paper for my printer. According to her,
admittedly reasonable, arguments there was no point to bringing a heavy stack
of paper with me that I would pay its weight in gold at the airport, since I
was going to “a civilised country and not in the middle of the desert”. One
might think that, but my counter argument was that I don’t know where they sell
the paper there, so I won’t know how to get any and then there is no point of
me getting my printer because I wouldn’t be able to print anything if I needed
it anyway. And I was proven right, because seven months later I still don’t
know where you buy printing paper in this country. I haven’t seen it. For all I
know, and although reason states otherwise, it doesn’t exist. And if a simple
stack of paper can create such a mess in my head, imagine what kind of chaos
can happen if we start talking about things that “don’t exist” by definition,
things that are abstract, like emotions or social rules, that can be there
regardless of the situation or whether you can spot them or not. The horror!
The other thing is time. I need time
to get things done and just because you can’t see the reason for that doesn’t
mean that it doesn’t exist. If I were blind you wouldn’t point your finger to a
building on the street and shout “look!” as you were trying to make a point. In
fact if you did you would probably either feel terribly or be considered as tremendously
insensitive because poor me couldn’t see. It’s the same thing with autism.
Expecting me to do something as fast as other people do is not only
impossible, I would go as far as to call it abusive. I need a lot more time to
do things, because I examine A LOT more details than anybody else to get
something done. I cannot do two things at the same time because it’s like
asking me to read one book with my right eye and another one with the other and
be able to process both at the same time. It simply cannot be done. I am going
to do one thing, but I am going to do it perfectly. So know what you are asking
of me to do before you ask it.
I am not by all means saying
don’t ask me to do things. I don’t want you to see me as an incapable person
that is unable of being productive. I am just asking you to be appreciative of
how much effort is required to do what you are asking me to do. That way you
will also respect me when I reach my limits and consequently react in a way
that you do not understand (a.k.a have a meltdown “out of nowhere”). You are
not going to wonder “what suddenly possessed me” (the answer to which is of
course nothing, you just ignored the effort I’ve made to get to that point)
when I just won’t be able to cope anymore.
I think that the above,
admittedly lengthy, definition of autism covers all the challenges of the
spectrum and can be considered unanimous and applicable to everyone. It can
explain, if I may say so myself, all the little, or big, behaviours that autistic people do and nobody
understands why. Maybe sensory sensitivities/overload would need further elaboration, but you now what they say, always keep them wanting more! ;) Later lovelies! :)
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