Wednesday, August 25, 2010

I have a theory...

This is usually a signal for the Silent Partner to run and hide. If you have a moment, though, hang about. It could get interesting.

It's about autism. Funny that. And it comes after a couple of days of talking to service providers here in Sydney about how we could choose to spend some funding that we have accrued on Billy's behalf. It's part of the Australian Government's Helping Children with Autism Package, and it magically disappears two days before his 7th birthday in November.

Oddly enough, I'm not expecting Billy's autism to disappear at the same time. So, we're trying to make some strategic decisions about his therapeutic future.

My thinking (and it will feed into my theory at some point soon) is that we should blow this money on getting a picture of where he is at, in an autistic sense. I'd like some information - something more specific than our day to day impression that he is an awesome little human.

I'm not much into the comparing game, but it's clear there are many things that Billy does that other almost seven year olds do not do, and many things that other almost seven year olds do regularly that Billy resolutely does not do. And while I don't give a crap in general terms, I'm not conceited enough to think I've got my head across the entirety of human development.

I might be missing something. And that something might end up being important in his future. Some crucial pre-driving skill, or pathway to football watching... I'm hazy on the details.

So, with our remaining funding, I'd like as many assessments as we can afford. I'd like a new diagnosis. I'd like comprehensive reports. I'd like a crystal ball and a hug from a happy future Billy.

I'm not sure if the government will cover a trip to a clairvoyant. So in the meantime, I'll go with the accredited professionals. I rang around this week, and asked a few questions. And I am led to believe that perhaps a lady with a scarf and a dodgy accent may be more useful to me right now.

One psychologist told me he would have to see Billy's Individual Care Plan, to discover whether the professionals supervising his care thought my plans were wise. I told him that I was the professional supervising Billy's care. He said, 'No, I mean the professionals who know about autism.' I'm still wondering who those people are. Oddly, the psychologist didn't respond well to my request to interview members of his staff to see if I thought they were competent to deal with my child. I'm still wondering why.

The other perplexing thing about this psychologist was that he spoke with a heavy accent. Not like a clairvoyant in a cheap 80s TV show, but with a heavy accent nonetheless. I asked him if he would be the one conducting the ADOS, and he said yes. Let me say here, I am a migrant. I am proud and grateful product of Australia's multicultural population policies. But I am fairly certain that an English speaking child with a communication delay is not going to thrive in a language based autism assessment conducted by someone whose communication is expressively and receptively diverse. For want of a better word.

I know I shouldn't have to, but I will say, that I'm not being racist here - simply acknowledging that in this case, difference isn't the best thing lead with. I'm not doubting the man's competence, just his suitability for this task, with my kid.

So, my Google fingers moved on. I spoke to the Autism Advisors in NSW, and they assured me I do have the right to run this game any way I want, as long as the service providers and approved, and the services they are providing are also approved. I called another practice, had a chat and made an appointment to do the ADIR, the parent interview part of an ADOS screening.

I'm not sure if this is the right thing to do, but I figure I've only got a couple of months until the autism disappears... I mean, the autism funding disappears, so I'd better give it a crack and see what we learn.

Here's my theory.

Just like my experience with the psychologist, I am starting to believe autism is not about core innate impairments in people. It's about the circumstances surrounding the people. It's not about an absence of ability, it's about impediments to that ability being uncovered and exercised.

The extension of that position, then, must be that the people who know the autistic child the best, should be the ones driving their intervention journey. That person, generally, is a parent or carer. The one who sees the subtleties, who feels the quakes, who anticipates the explosions...

Dealing with autism is not an exact science. It is an art in many ways. A dance, a sculpture, a song... it is tactile and visceral and emotional. Living with autism does not have an evidence base. It is all anecdotal and completely experiential. While they are incredibly important, planning for your autistic child's autistic future can't just be about assessments, trials, age level approximations, degrees of difference and points on a scale.

We need the scientists and the researchers and the doctors - for advice and guidance. Most of all, we need them to listen to our anecdotes and learn from our experience. And we, in return, should try not to make a bad face when they insist we vaccinate (for the greater good) or give our kids antibiotics for a cold. We could all engage in a conversation, perhaps... wouldn't that be interesting.

Like any parent, I have a spidey sense about my kid. Sometimes it's about an oncoming throat infection. Sometimes it's about an approaching vomit (remember the story about catching a vomit in my hands when Billy came to a meeting with me?). Sometimes it's about a clairvoyant psychologist.

I've totally messed that up, haven't I?


Jenni said...

You are amazing!

Lisa said...

oooh, do I have some suggestions for you on fun (read useful) assessments. Just running out the door to get ratbags to school.
Maybe I'll email, because this could get long.

Jayne said...

Nah, you're on the ball - you need to know exactly where Billy is at, what goals he's achieved, what his strengths and weaknesses are, so you can work with him to pass further goals :)

Rebekah said...

"I told him that I was the professional supervising Billy's care. He said, 'No, I mean the professionals who know about autism.'"


you're on the ball, val. mama knows best.

Mama Deb said...

I'm still stuck on the fact that they have a 'helping children with autism package.'
Do we need to move to Australia?!

Caitlin Wray said...

Excellent post. I think your plan is pure perfection - so many would rush to cram in the latest treatment or therapy, not really knowing if it's what their child needs. Going for the last hurrah of assessments strikes me as eminently wise.

And I completely agree with your theory on autism. I recently read a comment from a mom on a discussion board who said she is sick and tired of reading articles in the media that start with "Children suffering from autism..." and I thought, damn straight! Time to change that catch phrase to "Children suffering from a world that doesn't respect autism...".

Love your blog and your easy, humourous style. Will be hanging around :)


K- floortime lite mama said...