Saturday, August 28, 2010

Can there be too many resources...

This week I had the great privilege (I always have to spell check that word) of meeting three medical professionals from Vietnam - Dr Trang (paediatrician), Mrs Tra (psychologist) and Mr Quyen (physical/speech therapist).

They are here in Australia for eight weeks to learn as much as they can about working with children with autism. Their trip is supported by an amazing organisation called CLAN (click through for some real evidence of what individuals can achieve with determination, compassion and strategic thought). The founder (I am proud to say) is a friend, an Australian and a mother of a child living with a chronic illness. We met (as you do) when our sons met at pre-school.

There are so many things to say about the experience of meeting these professionals, and they are here for eight weeks, so I'm sure the list will get bigger. The thing that been sitting in the front of my brain, though, is the question of resources.

I'm not sure what it's like where you live, but here in Australia, we're always concerned about a lack of resources for people living with autism. There's never enough. Not enough Early Intervention, not enough school based services, no where near enough anything for autistic adults. And it's true, there are more people than there are places. There are more complex questions than there are answers. There are waaaay more hours in the day than there should be where families are at a loss as to how to help their kids.

And, as always, there's always a glass with some liquid in it, to compare with, somewhere else.

Out of respect for the families and the medical professionals in Vietnam, I'm not going to do a laundry list of what does or doesn't happen in autism screening and management in that country. Suffice to say, it's nowhere near (and I mean nowhere near) what the smallest of regional towns in Australia could manage. Out of respect for our regional neighbours, I'm going to say that I know we all wish we were doing better.

As do the professionals from Vietnam. Their eagerness to learn, their desire for training in as many practical strategies as possible, their peaceful and insistent questioning about how they can use this present experience to build a better future... it's pretty impressive.

It makes me realise how many resources we have in the resource rich end of civilisation. Literally, at our fingertips. On the internet, in the library, at the doctors... love it or hate it, a crazy amount of information is out there. As we were sitting in the staff cafeteria of Westmead Children's Hospital here in Sydney, I was going through my hard drive and copying resources that would be useful to medical professionals. They are things given to me by doctors, therapists, educators and other parents, not even stuff I shouldn't have been able to find in the far corners of the internet at 3am.

Let's get a little perspective on this. I am a kids TV writer. I struggled with anything approaching scientific understanding so spectacularly in high school, that I wrecked my chances of admission to anything remotely intellectual at university. Seriously, I'm not afraid to say my English/French/History marks were pretty near perfect (nerd, I know) but I had to beg (there were tears involved) for the most basic of pass marks in Mathematics. Are you getting a sense of how my brain works?

Well, now transfer that, to the surreal scene where I'm handing resources to medical professionals and going, 'This might be useful in your medical practice in a major children's hospital.'

It's just not right.

The children these people are dealing with in Vietnam are just like my son, or yours. Or someone else's that you know if you don't have a son. You understand where I'm coming from...

These children are brought to the hospital by their parents (just like me, or you, or your friend) because they're in need of guidance, support, understanding. And dedicated medical professionals are working without the kind of resources that I can phone a friend and ask for.

Did I say, it's just not right? Ah, yes. I did.

I'm not known for my love of doctors, and it's all centred around the general impression I get from them that they would rather that
(a) they were anywhere than with me or my child,
(b) I only answered questions, not asked them and
(c) I avoid sharing any thoughts I might have as said thoughts are completely not relevant anyway.

I'm always left thinking that I've just walked away from a conversation that may have held clues to the location of the keys to the kingdom, but I didn't listen carefully enough.

Now, I'm fairly certain (after the last few years adventuring in the world of autism) that those keys probably don't exist, and even if they do, the doctors have no idea where they are anyway. I may even have a bit of a feeling that I could play a part in locating (or creating) said keys. But it's all about the doctors' attitude... and I know that a lot of it has to do with a lack of time. But, I'm starting to wonder if that attitude has something to do with too many resources too.

The doctors have a lot of information, the patients have a lot of information and maybe we're all getting a bit lazy about how we share our understanding of that information. Maybe we're all getting a bit of an attitude (me included, for sure) about the power we ascribe to the people who lay claim to understanding the information.  I'm typing myself up in knots here (I like that...) but I'm hoping you get where I'm trying to go.

This week I met medical professionals who work in very different circumstances to the ones I'm used to interacting with here in Sydney. Like the medical folk I know here, they are deeply committed to helping people (OK, I'm being nice, for the sake of a neat conclusion). In contrast to many of the experiences I have had in Australian autism world, the Vietnamese professionals are not afraid to say there's a lot they don't know. And they are trusting themselves to be able to sort out the nonsense from the useful stuff, as they listen to as many people as they can.

I'm not suggesting there's a straight comparison between my experiences with medical professionals here, and how things work in Vietnam. I get there's a lot of grey and generations of difference in politics and culture and all sorts of stuff I can't possibly begin to understand. I'm also not suggesting that Australian paediatricians should be taking checklists from my personal hard drive.

But... I am saying that autism, and a society living with it on a grand and broad scale is a relatively new thing. Being a new-ish thing, it's a great thing that those with a wealth of evidence-based, empirical type of information are open to sharing that information.

I'm glad that well resourced Australians are finding the time to assist less resourced Vietnamese people. And I'm especially glad that the Vietnamese professionals don't see the fact that they are seeking that information as a position of weakness or deficit.

They are clearly seeing it as an opportunity to clarify, to expand, to question, to learn.

And so, I am proud to be able to say, am I.

It's a steep learning curve, this autism life. And I, for one, thank folk like CLAN for helping me navigate it from a totally different perspective.


Lisa said...

I get it, I get it.
There are those medicos who believe that everything they need to know they learnt in med. school (10 years ago, from professors who last practised 10 years before that), and then there are those medicos who believe that they never stop learning, and aren't afraid to learn from anyone, anywhere; those who listen and sift and sort.

I love it when I find a group two doctor.

K- floortime lite mama said...

Totally hear you !

I grew up in India and my heart
breaks when I think of all the kids with special needs in less developed nations

The last time I was there I went and donated play therapy DVD's to a charity for special need organisation