Tuesday, February 22, 2011

Cooking up another theory...

Feel free to keep on clicking, this might not make a lot of sense.

Here in our protected little home learning world, I've been thinking about trust. About the biological nature of trust. And about how that manifests into what we see as autism, especially here on the HF/Aspie end of the spectrum (though I'm almost sure there's a relationship right along the spectrum).

I'm going to throw a few phrases out there, and then try and rein them in again - some thought crochet, if you will.

I'm thinking about fight/flight/freeze. I'm thinking about safety. I'm thinking about thinking. I'm thinking about the box that is the moment and the ability to think outside of it.

And it seems to me, for Billy at least, that 'big picture' it's all about trust.

It's like autism, for Billy is a biological lack of trust.

He lacks the ability to suffer the slings and arrows of everyday fortune, never mind the outrageous stuff. When his sensory boundaries are violated, it takes the moving of mountains to get him back into a place of calm and trust. It barely matters who you are - stranger or most intimate of associates (ie. me), if you sneeze/cough/scream/bark (OK, I don't bark a lot, but Scruffy does), then you join his crap list for a fair whack of time.

We are incredibly fortunate that Billy's extreme responses are very rarely meltdowns, or our lives would be truly traumatic. Billy doesn't melt down, he shuts down. He literally shuts up shop. If he can, he will run away (traffic, be damned). If he can't put physical distance between himself and the person who makes the noise, then he goes inwards. Hands on ears, eyes closed, foetal position, as close to the floor as he can.

He does what any of us would do when we've had the life scared out of us.

The only difference is that it's everyday life that scares Billy. And, for some odd reason that I find very hard to comprehend, that makes it OK for people who are not Billy to question the validity of his reaction.

'Hey kid, sneezing is totally normal, why would you react like that over a sneeze? Plus, you are just a child... grow up, get it together, pull yourself out of it.'

He can't pull himself out of it, just because people might want him to. If it's possible at all (and let me tell you, we've been working on this for seven full years), it's got to happen his way, in his time, in his body. Chemically. Biologically.

It has always seemed odd to me that autism is considered a mental disorder, and it seems even more odd that mental disorders are considered principally behavioural. Like you can learn your way out of them.

I'm not discounting the value of therapy, of any kind. It's awesome stuff. Critical thought, experience, evaluation and learning are brilliant things. I see change in Billy all the time, in response to targeted therapy and to experiences. For sure.

So, am I being naive to think that both the original behaviour and the change have a biological basis?

Repeated lived experience (the 'chuck them in the deep end' mentality) may well be the best (and most convenient) way build trust in a neurotypical child, but the longer I live in autism world, the more I believe that it is not high on the effectiveness scale for Billy.

What does work?

Time. Compromise. Sensory work. Sometimes... nothing.

Some days, it's a little depressing to have to accept that.

It's time to get my trusty teaspoon, and start moving that freaking mountain again. It's unlikely to disappear, but it'll make change for sure.

In the meantime, we'll work on it here in sneezing free, coughing free, barking free world. And, for what it's worth, stifling all those things is a quite the challenge. Trust me.

And if you can't trust me, trust Scruffy.

ETA: first study uncovered. My digging spoon always comes up trumps!

ETA 2: another one. I may not sleep tonight.


Anonymous said...

Of course he can "learn" to just deal with it.
Autism is just bad parenting isn't it?

Di said...

Valerie, next time I am on my way to New Zealand, I am going to have a stopover in Sydney to see you and your boy!! :-) Really love your blog, interesting, amusing and 'real'.

This made sense to me!.........

Lisa said...

I'm thinking about filters. How filters work in an NT brain. Firstly, I think that the NT brain can work the settings on the world amplifier, where the spectrum brain has all settings on '11'.
Then, the quickly adaptive NT brain responds to 'too loud' or 'too bright' by internally changing the appropriate setting.
Hey, the NT can now automatically recognise the sound of the chainsaw down the road and ignore it (mental process - register sound, recognise it as not threatening, filter).

The spectrum brain starts at '11', and doesn't seem to have an automatic filter. Hence Billy and earmuffs, and Dreamer and his wanting darker than the darkest sunglasses available.

Dana Meijler said...


What a thought provoking post. And you are so right, it is inherently biological and most poeple without any experience about the spectrum just view us as bad parents and our kids, at kids that just can't get it together.

I smell a blog post of my own coming on this topic too......hmmmmm.

Thanks for the food for thought on an otherwise lazy Saturday!

Take care.