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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Sunday, June 17, 2007
All Aboard

Picture courtesy of Ripe Fruit.

This is a picture of Melbourne's iconic Flinders Street railway station and is the central hub for all the outlying suburbs that are connected to the rail system; trains shuttle back and forth, day and night, bringing people of all persuasions to and from the city.

There is another hub that I've been reading and thinking about about lately and that is Autism Hub. This is a central site from where interested folk can access blogs from both autistics (neurodiverse or nd) and also people (neurotypical or nt) who are involved with this condition, but don't actually present with it, such as parents and carers. But instead of trains, Autism Hub is the central point for ideas about autism that people put up on their blogs and those ideas hum up and down internet tracks day and night, connecting people all over the world.

What has caught my attention is how different folk actually view this site; I've read about neruotypicals who feel they don't quite belong and I've followed the debate of an autistic as to why he feels he doesn't belong either and in fact dramatically quit, causing some major ructions within Autism Hub and it was a series of comments that appeared after a posting by the owner of the hub that left me wondering a bit if some people do in fact understand what Autism Hub actually is for.

For me, the answer is simple, Autism Hub is for a-u-t-i-s-m.

But what seemed to be upsetting a particular autistic is that he felt that Autism Hub should be for autistics only. That neurotypicals can't and don't really understand what it's like to have autism and have no place there. This argument is a familiar refrain and is seen in many different places, usually where a group has attained some specialized knowledge through dint of their work. Footballers would be a good example - many believe and aren't shy about saying that they are the only ones who really understand the game. This disingenuous argument completely ignores the vast army of fans, who week in, week out go to watch football and have a keen sense of the game and will happily applaud a champion doing amazing things as well as dish it out to someone under performing.

Because they understand.

To be dismissed as someone who doesn't understand autism because I don't have it, is to miss the point. Every day I live with it and have obtained insights through practical experience as well as what I've learned through educating myself. It is possible to say I don't know what it's exactly like to have this condition, and in return I could say autistics don't know what it's like to be neurotypical, but what is that saying? If I disagree with an autistics point of view, it's not because I don't understand autism and by dint of having autism, doesn't always make one right when talking about it, but by the same token, there is nothing wrong in holding different views, they're just that, views.

Further, it would be a fair question to ask, does someone with Aspergers really understand what it's like to be a higher functioning autistic and in turn do they realize what low functioning autistics go through? Having a place on the spectrum, doesn't automatically qualify someone to speak for everyone there - just as in my world I understand a lot about high functioning autism, but would be lost to explain the needs of someone on the other end of the spectrum.

I can understand someone setting up a site only for people with autism, but why attack a site that caters for both neurodiverse and neurotypicals? To make a scene out of it only gave the impression that there was attention seeking behaviour going on. Why bother to publicly announce that you were quitting the site? It's too easy to set up a new site with your stated goals without making a fuss and I'm sure Autism Hub would have helped. Is dividing the autism community even smart? I know from a friend's experience that here in Australia, Autism Victoria has struggled for years to become the peak body for autism in my home state. Whilst this struggle was going on, various bodies with some affiliation to autism would apply for funds and the government would use these splinter groups to simply divide and conquer, giving out lesser amounts of cash than a united front could have won. Unknown organizations would be given small grants, in one case someone was given a grant of almost $100,000 and all that was known of them was a post office box number - how the money was spent, no one knows. Only the government won.

I understand that some autistics might want to set up their own sites and talk only amongst themselves, that you are a sub group within society and might feel more comfortable amongst yourselves, there's no need to explain anything to anyone. But to exclude me and people like me on the basis we are neurotypical is neither clever or in your interest. We are simply here for you. The saying I heard that someone is an autistic adult for longer than they are an autistic child cuts no ice with me, because I will be a parent of a person with autism for the rest of my life, there is no choice for me. What I read into that statement is a fear of paternalism.

My daughter is an adult-in-waiting and I see my job as helping her to get there. Just as I don't know what my other neurotypical children will make of their lives, I have no idea what M will make of hers. I just want to give her the best chances of becoming independent. For instance, in her mainstream school, she has an aide. We have asked the aide to do as little as possible for our daughter, to only help when needed, which seems counter intuitive, but it means M has to do things independently. Is that not how you learn to grow up? It seems to me in every way that I need to do the same things with M that I did for all my other children.

You see, I don't look at autistic people any differently than I look at anyone else. Sure they might have problems in certain areas, which might need a bit more work, but that doesn't make them less of a person or someone that I might get to know if we were both predisposed to it. I had a lot to do with an autistic person before M was born, so I know it's possible to have friendships on and off the spectrum.

You might not believe this at the moment, but it's better to have me and others like me on your side than to vicariously tell us to piss off. I for one, won't be listening anyway. I'll be the one trying to make the train ride comfortable and as fun as possible.

Toot, toot, tickets please.


  posted at 12:07 pm

At 9:28 pm, Blogger Squishy said...

I completely agree with you. You my friend have every right to be pissed. Your passion for M is exceptional and I for one admire your strength and your courage. I don't know if I would be able to be as obviously, amazing, emotionally that you have been. You know and you understand exsactly what is happening with M's Autism You my friend are an extremely exceptional parent in my mind. Don't worry about this person and just keep up your fantastic support and understanding. At the end of the day they are just hurting themselves by isolating their social group.

Cheers Amelita

P.S. I hope what I said makes sense.

At 8:11 am, Blogger Gigi said...

You've stated your case most eloquently, Neil. Your love and commitment are deep and sincere.

I'm never certain why some special interest groups make a cult of self-isolation but it isn't healthy, in my opinion, to deny the participation of those who love and are firmly empathetic. These are the people who are most dedicated to your thriving in a varied, complex world, after all. Why would you burn this vital bridge?

But of course, that's why you won't be listening anyway. You know better.

At 9:19 am, Blogger Shell said...

I have a horrible feeling that this crazy situation was based in victimhood which, when behaving badly, is as exclusive and damaging as any other clique. I might be wrong and i apologise if I'm speaking out of turn. To damage a support network in this way just seems so sad and bitter ... and here you are, picking up the pieces already ... you're a Good Soul, Neil ...

At 1:47 pm, Blogger neil said...

Hi amelita, yep, makes perfect sense.

Hi gigi, that's what I worry about, the self imposed isolation. I know from an autistic point of view, that is not necessarily a bad thing, sort of goes with the turf, but to make a point of excluding the very people who want to help doesn't make sense.

Hi shell, I felt sorrier for the site owner who honestly did his best to work it out, it looked like it took a toll on him.

At 6:16 pm, Anonymous Anonymous said...

Some may feel squeamish about eating it, but rabbit has a fan base that grows as cooks discover how easy they are to raise — and how good the meat tastes.


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