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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Thursday, May 17, 2007
A Way To Say It
One of the things I'm still learning about is the language of autism and how it's used. One of the earliest examples occured when I was corresponding with a fellow blogger, mom-nos about the way she was describing her son. She always wrote when mentioning autism that her son is autistic, but what I prefer to say and write about my daughter M is that she has autism. It's a very fine distinction that makes a big difference about the way we think of autism and the people who have it. Mom-nos pointed me at one of her posts which explained why she wrote and thought that way and also pointed me to a post written by an autistic person, Jim Sinclair, who mirrored her thoughts.

In a nutshell, it's about how autistic people view themselves, some take the position that autism is so intrinsic to them, so much a part of themselves, that it makes them the way they are, the way we view them and as such are more comfortable being called autistic as this defines their character, which can't be separated from them. What Jim would like me to say is "Jim is autistic" and I respect that and would happily do so, but what I'm really longing to say is "Jim is a person" and by calling him autistic, it's distracting me from the main game - his personality, who he really is, of which autism is just a part.

With autism there are several defining traits that need to be present in order to arrive at a diagnosis, some of them are easy to spot, speech delay, lack of eye contact or the inability to socialize with others. But some behaviours that are identified as autistic are also common to all people. Have you ever seen someone nervously rocking their leg up and down or another who likes to have their possessions lined up and ordered just so? What about someone who becomes obsessive about a hobby or interest and how do you feel when someone sits in your favourite chair, slightly uncomfortable?

There might be little bit of autism in all of us, which should come as no surprise, autism is the result of the brain being wired up a certain way and causes some behaviours and thought processes to be modified or amplified, the acme of which can be seen in autistic savants, people who have an extraordinary gift or abilities, the most famous of which would be Kim Peek, who was the inspiration for the movie Rain Man, with his eidetic (photographic) memory. But all us can recall detail to a lesser or greater extent and there is some evidence to suggest that you can train yourself to have total recall, so the latent ability may well reside in all of us, it's just that Kim's brain was pre-wired for total recall, he didn't have to work at it. But if you were to work at it, you could in theory get a part of your brain to wire itself up just like Kim's.

So if it's the brains internal wiring that is responsible for autism, yet it might be that all of us possess some of its traits, how is it possible for autism to define who you are? All of us a wired differently, no one is the same as the other; all people with an autism diagnosis are considered somewhere on a spectrum - precisely because they are not the same as each other, which is exactly like every other person on this planet, so when you tell me you are autistic, you are telling me nothing about yourself, other than you may have some qualities that are unique to you, just as I have qualities that are unique to me, some of which we might share. It's as if autism is hiding you in its shadow. But when you tell me you have autism I immediately see you as a person who has disclosed a part of who you are with me, you are saying to me that you have autism, it doesn't have you. That's what I want, to see you as a person.

Thinking like this was central to how I viewed my own daughter after we had received her diagnosis. It didn't change a single thing that I thought or felt about her though it certainly helped to explain a few things, but M was exactly the same person after the diagnosis as she was before it, nothing changed to make her different and I treated her no differently because of it. Sure, we had to learn a new way to approach certain things, for instance we used picture scripts of what we wanted her to do and she used those same scripts to tell us what she wanted, the pictures being easier for her to understand than language, but her essence, her character, her being, nothing changed.

When I look at M, I don't see autism, I see my daughter.

Labels:

 
  posted at 3:43 pm
  8 comments



8 Comments:
At 7:04 pm, Blogger MyKitchenInHalfCups said...

Here's the comment I left on Mom-nos's post you link to here.
Incredibly deep thoughts here and extremly well written.
I'm here after reading Neil's(at my table) post today. I read Jim Sinclair also.
Which ever way to say it, it seems to me what's really important is seeing each child as uniquely different and responding to that individuality.
My grad school professor (in a child dev class) one day asked "What is the goal of childhood?" The answer of course was simple and so obvious our class of 6 drew a blank initially. "Adulthood" and sometimes they get there inspite of us.
If you are responding to your child as the individual they are, it might not matter how you say it maybe it's more important what you mean when you say it.
Really a wonderful post.
I think the same here.

 
At 7:59 pm, Blogger Lydia said...

I have been sharing your posts with a friend whose son has autism -- and his 40th birthday is this week. I have learned a lot from her, and from you, about autism. Thank you for what you've written.

 
At 8:36 pm, Blogger Kalyn said...

I do agree with your way of thinking of it. Wonderful thoughts.

 
At 5:19 am, Blogger mcewen said...

I think this is partly why people find autism so mystifying, because it is a spectrum disorder and each one is unique.
Best wishes

 
At 4:08 pm, Anonymous kathryn said...

The language we use to describe others is often tricky. How much of it is an accurate reflection of the person and how much of it squeezes them into a box, which limits and constrains them. Language is important, so thinking about the terminology you use and talking about it, is also vital.

This year my partner was diagnosed (at 38) with adult ADD. It's been an interesting time and ultimately very rewarding. I can see the people, the doctors and the books that limit him. That talk about ADD as being something that needs to be managed and even cured.

But for me and also now for him, his ADD is an integral part of who he is. He simply wouldn't be the same spontaneous, funny, unpredictable and interesting person that he is, if he didn't have ADD. Yes, he could do with some assistance in some areas (tax returns, housework, remembering his keys), but he certainly doesn't need to be "cured".

 
At 2:42 pm, Blogger neil said...

Hi tanna, I can see you have given this a lot of thought and that's the thing all of us parents are teaching our kids how to become adults as best we can. There are times when you wonder about it and other times give you the utmost pleasure.

Hi lydia, when I started, I wasn't too sure about exactly what to write so I'm pleased there was something in it for you. Thanks.

Hi kalyn, thank you, it means a lot coming from you with all your experience.

Hi mcewen, testify sister. Ain't that the truth.

Hi kathryn, ahem, some of those areas your partner needs help might be the same for me! Yeah, and down with boxes.

 
At 2:42 pm, Blogger neil said...

Hi tanna, I can see you have given this a lot of thought and that's the thing all of us parents are teaching our kids how to become adults as best we can. There are times when you wonder about it and other times give you the utmost pleasure.

Hi lydia, when I started, I wasn't too sure about exactly what to write so I'm pleased there was something in it for you. Thanks.

Hi kalyn, thank you, it means a lot coming from you with all your experience.

Hi mcewen, testify sister. Ain't that the truth.

Hi kathryn, ahem, some of those areas your partner needs help might be the same for me! Yeah, and down with boxes.

 
At 5:45 pm, Blogger Tara said...

Neil,

I think that this is an issue that faces people with all sorts of disorders and diseases, as kathryn has pointed out with the example of her husband.

I came across this same language issue when I was diagnosed with Type 1 Diabetes. I find that saying 'Tara is diabetic' feels like the person is generalising me amongst every other person with diabetes out there. 'Tara has diabetes' is more accurate as it seperates the disease from me as a person. In my case, I lived 21 years without this disease, and I would like to think that I was a complete person before I got it. Therefore I am still a complete person, with a whole set of values, morals, dreams & aspirations that could be very different from another person who has diabetes.

In short, I agree with your way of thinking. Your daughter is your daughter, she just happens to have autism.

 

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