Let's give them something to talk about...

A recent discussion elsewhere has gotten me thinking about some of the things we (those of us with "disabilities") talk about a lot. We sit around and bitch and moan about how "nobody understands" what it's really like to have whatever diagnosis we've been saddled with. But we don't step out and do anything about it. Then, when our allies try to do something to help with the situation, we gripe and complain about how "it's the wrong thing" and actually makes things worse. But we don't offer any ideas for replacing or fixing it.

It seems to me that perhaps we are all very used to being oppressed. And while we don't like it very much, having that change is really kind of frightening.

I just finished writing an article for a local publication (I'll provide more information once I'm sure it's being published) about the Friend 2 Friend Social Learning Society, which is based in BC. The Society gives presentations in schools about what autism is and how everybody is different - we all have different kinds of minds - and that it's okay to be different, we just have to allow for those differences.

With children aged 3-10, they do a puppet presentation and have some hands-on time with the puppets, etc. Ages 10-18 get to play a sensory simulation game and do some other activities that engage everyone. At the end of these presentations, the students and the teachers all come away with a better understanding of where the autistic child is coming from; at the same time, the autistic child often has realised that he's not broken or defective.

The sensory simulation game is what started the discussion I mentioned at the beginning of the post. I will share my side of the conversation; the other person involved may choose to reveal themselves in the comments here. My goal in posting this is to open up discussion and perhaps find some new methods, ideas, and solutions to the problems mentioned in the passages I am about to quote.

I agree with you 100% about the need for educators to have an excellent knowledge of autism. The problem is that there is no real way to get that knowledge at this time, save doing the kind of thing I and others like me are doing: getting out there and learning directly from autistic people what autism is and is not. The books don't tell us what we need to know, and the "experts" don't know what we should know, either. So, we need to change that. The best way that I can think of right now is to get the correct information into the hands of the general public, not merely into the scientific journals. Yes, science is absolutely vital, and all research about autism needs to be ethically sound, but if non-scientists do not have access to accurate information, we can't expect the changes we're working towards to really gain any kind of hold on society.

I also agree about disability simulations, and I've read the article on Ragged Edge before. At the same time, we need to actively present people with functional alternatives to these sorts of things. I remember, when I was doing that one term of music therapy, we had a course about physical problems, and we all had to take some time during one of those classes to use wheelchairs and braces and crutches. For me, it wasn't one of those "enlightening experiences" people always talk about. It was interesting, and a learning experience, but I didn't for a second believe that a few minutes in a wheelchair gave me any inkling of what it would be like to be a paraplegic. The problem with all of this is that non-autistic people are looking at autistic people from the outside, and autistic people are looking at non-autistic people from the inside, and it is extremely difficult to describe "what it's like" to be something that is simply the way life is for you.

For myself, there's a song that plays occasionally on the Christian radio station here that has a very frenetic pacing to the background music. The words also go very fast. I commented one night to a friend that this song "is what my brain is like", and she laughed. It is incomprehensible to non-ADHDers - they just can't figure it out. What we need is to find a way to describe things that put everyone on the same playing field.

For example, one of the kids I babysit is extremely sensitive to gluten. When he eats it, he gets bad diarrhea. We call it "goopy poop". One day when I was over, I was having stomach problems (I'm lactose intolerant, and I think I had too much milk products that day). He got testy with me about how I was always going to the bathroom, and I was able to tell him that I was feeling the way he always did when he had goopy poops. He understood after that, and there was no more complaining.

To my understanding, the Friend 2 Friend Programs talk more about "differences" than "difficulties". I am working on changing my language, as well, though it is difficult for me to do so when a lot of those differences we see in autism are also differences I myself have dealt with all my life. I know, first-hand, the difficulties I have faced in my life as a direct result of the way in which I perceive and interact with the world. The thing I am still working on understanding is that those difficulties were (and are), by and large, more a result of my living in a world that is not designed for ADHDers to function well in than it is a result of my ADHD.

[snipped paragraph that is not relevant]

Getting back to the sensory simulation stuff, it's impossible to simulate perceptual differences without simply affecting the sensory organs instead. As such, I don't think that particular objection [that sensory simulations are bad because autistic sensory processing is different at the perceptual rather than the sensory - at the organs themselves - level] to the simulations is valid. The objections listed on the Ragged Edge page are absolutely valid, as often disability simulations do result in that "inspiration" thinking that is so ridiculous and false. Coping mechanisms abound, and those make our lives as adults easier than the lives of the non-disabled who are pretending for a little while.

Cool facts are great, but we need to reach all learning styles. Some people learn by doing; some learn by seeing; some learn by hearing; some learn in various combinations of the three. Making the learning fun by turning it into a game also helps get the kids involved. As the programs stand currently, they are developmentally appropriate and engaging for all children. There is always room for improvement, of course, and that is where speaking up with ideas for those improvements comes in.

So, how do we teach those cool facts about autism in a game format? It needs to be appealing to kids ages 10 and up, and it needs to have a physical component as well as a visual and auditory component.

And to make it more clear:

...How do we teach children cool facts about autism and make it fun and engaging for all learning styles?

...I think that the process of discussing the problems I brought up is how we will find solutions to those problems. Refusing to talk about them at all just ensures that the problems continue.

The points I raised:

1. Educating the general public is the best way to change society; the problem is that the correct information is difficult to lay hands on for people who are not scientists.
2. It is impossible to explain to someone "what it's like" to be something you've always been, because that is "normal" for you and you have no reference point for their "normal". Finding common reference points is the best way to render an equal playing field. The problem is finding those common reference points and then figuring out how to explain the differences.
   

...

I'm not saying we should continue doing disability simulations until we find something better. I'm saying we should find something better now, so let's talk about it and make the change.

I'm not saying that some education is better than no education, so let the incorrect information go out into the world anyway. If I really believed that, I wouldn't be here at all. I'm saying we need to find a way to get the correct information out there now, so let's figure out what to do and do it.

So, any ideas? How do we change these things? What are good experiential alternatives to disability simulations? How do we get the right information out there?