About Me
I'm a Melbourne boy, hailing from St Kilda with one ex, one current wife and four kids. Love the outdoors and making new discoveries. I cook a lot at home (cheers from wife) and do some preserving, mostly jams, pickles and fruit liqueurs. This is the diary of a cooking journey.

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Friday, October 13, 2006
The Road Less Traveled
We share 99.9% of our DNA with chimpanzees, yet we are a completely different species by just 0.1%. One of the things that 0.1% confers on us is the ability to speak a language, allowing us to exchange thoughts and ideas with each other using a complicated set of rules and symbols. The trouble is that these rules and symbols are really only guidelines and each of us interprets them in a totally unique way, though there are conventions about the use of language, which are usually learnt at a young age. Some things we say are quite specific and less open to interpretation, for instance if someone was to ask me what colour eyes I have, I would reply blue. But if someone was to ask me to describe myself and for instance I said I was strong, what exactly do I mean? Most of you would think I was referring to my physical strength, but what if I meant I'm mentally or emotionally strong? You can't get inside my head to understand where I attach importance to strength, but to me it's obvious.

The other day I was over at MOM - Not Otherwise Specified reading this post, when I was struck by something in comments, MOM-NOS described her son as autistic, which given that he has a diagnosis of autism seems completely reasonable. However I recall at a school council meeting, when one of the parent representatives described her child as autistic and the school principal spoke up and said that none of the children were autistic and that they were all kids, just like any other, but they were kids with issues that needed to be addressed. In one blinding flash my daughter was humanised, separated from the chimpanzees and part of the human race, which in itself has an infinite form of expression. M just expresses her humanity in a way that is completely unique to her, as we all do. It's just that we put a label on her form of expression, even though many of the things she does are not only confined to people with autism.

So whenever I talk about M's condition, I never say she is autistic, what I say is that she has autism. It's a subtle shift in the way I use language but for me it has had a profound effect. Saying my child is autistic is concentrating on the behaviours that set her apart, but says nothing about her as a person, saying she has autism concentrates on her as a person. It's sort of like the difference between saying M is a green eyed person, rather than saying M is a person with green eyes.

I'm reasonably confident that you are following my train of thought so far, because it's about to get harder. I left a comment on the MOM-NOS post, not in as much detail, but in essence the same. MOM-NOS replied that she had a done a previous post on pretty much the exact same thing, in which she argued that her son was better described as autistic rather than someone who had autism, pointed me to that post and another by an autistic person who had influenced the way she thought.

I read each post slowly and carefully, several times in fact as I wanted to absorb as much of what they were saying as possible, but I couldn't agree with what they were saying, it wasn't only because I was unwilling to hand back my daughter's humanity, rather I couldn't get the arguments to gell in my mind and found myself starting to formulate counter arguments, based on the nuances of language. It's not the first time that I've disagreed with what a person with autism was saying. The post in which I came out of the closet as the parent of a child with autism came about because I disagreed with someone else's comments. I understand that if you have autism you will have insights unavailable to me, but in other areas you are just like me, a person with opinions, not autistic opinions, just opinions.

I thought for a very long time what I would like to say in reply, so long in fact my head was hurting. Then a moment of absolute clarity occurred. My beliefs were a great comfort to me, I bet that their beliefs were equally comforting to them. Who was I to be so conceited as to say that my way of thinking was best. All of us were expressing our thoughts in different ways, but in ways that made sense to each of us. There are so very few signposts on the autism road we are traveling, that when you do eventually find one it's very exciting and you want to share with others on the same road. But every journey is unique and some prefer a slightly different path, there is no right or wrong about how you get to where you are going.

It's just a journey.
  posted at 8:15 am

At 7:01 pm, Anonymous Ellie said...

A really interesting post, and a topic that had never crossed my mind. It is interesting how much wording can shift the meanings and implications of a statement. I've read through the posts you linked to and to be honest, I think I can kind of understand the stance of either side of the fence, but have to fence sit.

I think that in the end, all the kids have to realize is (as my mother used to tell me as a child) - you are who you are, and that's OK.

At 12:05 am, Blogger pentacular said...

Neil, as usual another very informed post. The secret I suppose is understanding and discernment. Understanding autism can help in understanding M, but understanding M doesn't help in understanding autism. She will express the symptoms of autism in a way that is unique to her, but the symptoms are not unique to her, and that is what makes understanding her autism possible. The same can be said of our journeys, there is some objective truths but they are all expressed uniquely. This is why we can be right about the same thing and yet have opposing views, Something we also have in common with other life forms. We are distinguished most by language, as you say, but the trouble with this is the very segregation evident in believing someone can be autistic. The language is not accurate but as language cognisant creatures we also define through language and that can be innacurate and separationist. True language is intuitive and does not separate, thus an 'autistic' person is really a child, etc. We are in fact finitely communicative once we reduce our understanding of one another to spoken language. Yet we also understand logic through the separation of 'things' and thus can detect 'universals', or the difference between right and wrong in logic. You can rest assured that if you think your argument holds up to logic, then you are justified in belief, as long as it does. There is no right or wrong about where we are going, but our cognisance gives us the upper hand in figuring out what works best.

At 2:25 pm, Blogger neil said...

Hi ellie, you are who you are really says it all. No problem with the fence sitting, I was exploring the concept of two people holding contrary views that were both right.

Hi pentacular, that's not a comment, it's a manifesto! Understanding and discernment really sums it up.

At 8:01 am, Blogger Reb said...

All v interesting. I think it also has something to do with metaphoric thinking about health and illness. To say M 'has' autism you treat the condition as a posession, as other, as remote to her, not something intrinsic to her being. To say she "is" autistic binds it closer to her intrinsic self. I can see both depictions would be comfortable for different people for different reasons. When you think about the way we speak about other conditions like, say, cancer, we say 'struggle with cancer' which implies something akin to a battle or war and also a sense of victimisation. It also metaphorically construes the disease as 'other' - something not human to be fought against. George Lakoff has written about this in "Metaphors We Live By" if you want to have a look. I think it's always useful to contemplate how we frame the discourse around health and social issues because it has such far reaching effects on how we conceive of ourselves and others.

At 3:05 pm, Blogger neil said...

Hi reb, well summed up, the whole thing hinges on whether you like the possession or intrinsic part of it. I really understood what MOM-NOS was saying but I've heard of a person, Woody Allen, described as autistic, which is saying something about his character, but when I say my daughter is autistic, what am I actually describing? And a lot of behaviours ascribed to autism are in fact behaviours that are common to people in general, is Monk (from the tv series) who is obssessive/compulsive, autistic for instance? So when I say my daughter is autistic, I'm not sure what I'm really saying, but when I say she has autism, I know exactly what I mean.

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