With skills beyond my usual expectations, I woke myself at the godawful hour of noon today (I had been asleep since around 8:30, because Prosper was a little beast and ended up being Bathroom Cat (1)) and made it over to work eleven hours before I was due. There was a presentation scheduled on autism and assistive technology, and I was geared up to do some heavy correcting (my experience with the clinical staff here is that they wouldn’t know an autistic child if one stood in front of them had they not come in pre-labelled).
The presentation was given by two nice ladies from a service called TTAC (training and technical assistance center). They were genuinely pro-neurodiversity (though I’m not sure they were familiar with the word–they work with teachers, mostly, on the fringes of a lot of different disabilities without being immersed in any one community) and super heavy on the people first language (a very big problem around here and one that is very easy to accidentally fall into).
Like every seminar ever since the history of seminars, we all had to say who we were, and where we worked (there were a couple of people from outside the centre). I had to go first (ugh), and chose to disclose my place on the spectrum. The direct care staff present all knew anyway, so I couldn’t see any real harm and felt it might lend weight to any corrections or contributions I might make. To my surprise, I had no real corrections to make at all! These ladies were on top of it and very well prepared, and asked for my imput along the whole presentation, repeatedly praising me as the perfect resource for this centre. Quite a lot of awesome validation!
One small point I mentioned during a short discussion of sensory issues facing those on the spectrum was the area of touch. There are a handful of people who are allowed to touch me without warning, though I’ve probably only explicitly talked about it with half of them. And I generally don’t get too upset if a little kid grabs without warning, either. But other adults and older kids to teens? Ugh. I explained that my sense of touch, like many on the spectrum, is both hypo- and hyper-sensitive. I love deep pressure (at the expensive of Kitty’s arms via backrubs) and startle greatly when touched unexpectedly. This is actually a lot better than it was before Melbourne–public transport sort of forces one to suck it up. But a lot of the staff and teachers here will touch kids who are on the spectrum without warning, and then be surprised when there is a meltdown–or a delayed meltdown. It can take minutes, even hours, for some children to process what happened and only then will they react. I’ve been trying to convince my coworkers to quit touching kids for a while, so I hope with the weight of outside help they’ll start to listen. One of the speakers seemed really profoundly moved by such a simple thing.
I spoke with them both afterwards, and we talked about things they might also include like synesthetic responses and how nonverbal children may not be able to communicate that they are having multi-sensory experiences and how that can influence behaviours (I suspect and have no way to test that a lot of visual stims might produce synaesthetic responses, making them waaaay more fun), or how girls are quite probably underdiagnosed and may be caught in an NVLD diagnosis (a post I still need to write), or how people first language is all well and good, but if a self-advocate chooses to use the adjective you should honour that. I called myself and the kids I worked with autistic, not people with autism, and explained that it is partially a taking-back of the word, and partially the formation of a community for those on the spectrum. We want the choice to self-label or not, to choose to be the face of a disability or not. Forcing people first language on those who want to identify by their label is just as unnecessary and potentially harmful as refusing to use it at all. As I explained, and I think I was understood, you should take your cues from the person.
My, um, assistive tech is a planner, my computers, a notebook, and Kitty. I’m not sure she counts, but I think she should–she remembers things for me (I do the same for her), helps keep me organized, reminds me when I need to do certain tasks. The planner helps me week to week to remember my migraine symptoms and appointments. The notebook helps me remember fleeting thoughts (so, so many are fleeting!). The computers allow me to speak at my best, without pauses for thought or silly pronoun or word-order issues like when I’m comfortable in person (plus they have spell check, which is like the visual equivalent of making sure you don’t pronounce a difficult word wrong).
1. Bathroom Cat is what happens when Prosper is being naughty (chewing on the blinds, usually, or trying to scale the fridge, or trying to sit on top of the window) and has to spend a while in the bathroom. His litter, food, and water are all in there, along with a toy or two that I can scoop up as I deposit him there while spouting off admonishments about how I just want to sleep why are you such a horrible bastard cat you are clearly half-breed basement cat spawn I am going to sleep and you are going to think about what you’ve done! Within about three hours he begins the endless whiney mewling to be let out, but those first two are really nice.