Wednesday, August 18, 2010

It's pretty irrational but...

There are a few things about living a life with autism that I really don't like.

I can handle most of them with platitudes like, 'He can't help it' or 'It's the autism, not him' or 'If you keep on staring at my son with that shocked fish look on your face I will be forced to stab you'.

But there's one I've struggled with all along, and it can't really be handled. Well, let me qualify that fatalist statement. It's really difficult to handle, because what people are doing is pretty much what I demand they allow Billy to do - they are responding naturally.

In pre-school, Billy didn't talk much to his peers. He attended under sufferance, talked to the adults when he had to and kept a safe distance on the edges of rooms, playgrounds and the dreaded circles. It was an integrated setting, so he was by no means the only child with a disability, and he was also by no means the most 'impaired' child in the room. He was, however, deeply overwhelmed by the expectations, the communication, the children, the everything... and that meant not giving much of himself.

He was the quintessential mystery wrapped in an enigma. As a consequence, the NT kids, if they spoke to him at all, spoke to him like he was a baby. In that sing-song-y questioning tone we use with the non-verbal infant. 'Aren't you a clever boy?', 'Do you know how cute you are?' kind of stuff.

He would seriously stare at them like they were demented. But when you are on the outside, looking at that WTF stare, it kind of reinforces the perception that you are not being understood. Consequently, kids (and lots of adults) chose to increase their volume, get closer to his face and re-iterate their inane rhetorical question in a slightly re-worded fashion (thus making him suspect he'd just been asked a second question).

Billy generally walked away and played trains, presumably pondering the abject oddness of the neurotypical. We tried to show him that the kids were being kind, empathetic, adaptive - all good things.

But without saying it, it was clear Billy was thinking, but why do they think I'm a baby? Given Billy's cellular fear of babies (noise, unpredictability, tendency to make people ask lots of loud squeaky questions), the idea that people think he might be one is, to say the least, disturbing.

Hippy school is a whole new kettle of fish. Awesome fish. Fish called acceptance, respect, boundaries, flexibility, individuality, creativity... Billy has, unsurprisingly, thrived in an atmosphere where children are children, who are concurrently capable of reasoning better than most adults. He responds because he knows there is an understanding of his sensitivities. It's clear because it's stated. It's clear because the same understanding exists for every person in the place. He is much better able to face the slings and arrows, because he does not fear. He knows he doesn't need to fear.

It's still loud, and he can walk away. It's still intense, and he can ride through the intensity in ways that make sense to him. And... there are still people, adults and children who talk to him as though he is a baby.

I don't like it. He doesn't like it. But there's nothing 'bad' in what these people are doing. Just like there wasn't at pre-school or Early Intervention or in odd appointments with inappropriately experienced therapists. They are just trying to get through, nicely, in the way society approves... softly, sweetly, open-heartedly.

As he ages, I'm guessing it's going to become a bit of an issue for him. At the moment, he simply disengages. Maybe he's unsure of the appropriate response... maybe he's offended. I don't know.

If I'm there, I smile weakly, give him a minute to respond, and if he doesn't I repeat the question word-for-word in a more functional tone. In my head, I'm thinking... he's smart, he's passionate, he's curious and intellectual... he just doesn't speak your (social) language...

But then, the sing-song-y people aren't even speaking their own language.

I can understand his confusion.


Ro said...

Yerck, I can't stand those sing-songy people.
They've already pigeon holed others and have engaged what they think is the correct way to converse with them.
Trouble is, if you say anything to correct them they get snooty and, being such poor judges, see it as an attack upon themselves and then just get crabby each time you have to deal with them.
These are often people with poor self esteem who choose to work in therapy-type areas where they (sub-consciously) get a mini-boost from working with people they see as being somehow less than themselves.
This is not to say all therapists are like this, just the sing-songy people.

Lisa said...

There's always the t-shirt:
"Ignoring you is my special way of saying I DON'T CARE"

Yes, he has one.
And besides - the drop-dead look coming from a 6ft person usually shuts them up.


Danni said...

Oh dear. I afraid I am related to the person who did this yesterday. I couldn't quite think quickly enough to explain how that wasn't required. Thanks for the reminder.