One of the banes of blogging is planning to post on some thing and then having something else come up. I was going to write about the Tori Amos concert on Sunday (short version: Tori and support act Yoav rocked the Theatre of Marcellus), but MJ has answered me. Originally, my reply was going to be a comment, but I realised that it was too long to be just a comment. For starters MJ, thanks for clarifying that you have three daughters on the spectrum.
This comment from MJ piqued me.
“The sad fact of the matter is my children’s only hope for anything even approaching a normal life is to lose most of their autism or learn how to function in spite of it.”
Well, what form would a game changer like that take?
A Targeted Gene Therapy? Exceptionally unlikely, and it would be prohibitively expensive even if it came to pass.
Medication? More likely but still very unlikely and it would have a high possibility of severe side effects.
A new learning technique? Hmm, that sounds very plausible.
A new assistive technology? Also very plausible.
Here’s a final analogy for everyone. As a software test analyst, I have an interest in the fields of usability and accessibility. Usability is officially defined as “the extent to which specified users can use specified software to achieve certain specified goals with efficiency, effectiveness and satisfaction in a specified context of use”. Accessibility is the extent to which disabled users find software usable.
What does this have to do with anything? Well, there’s a correlation between accessibility and usability. Usable software (whether an application, program or website) is typically more accessible than less usable software, and accessible software is more usable than non-accessible software. And this brings me to my point.
If a new assistive technology or training method that was capable of helping your daughters appeared, MJ, I’d advocate for it. Why? Because even though I’m high-functioning, my autism still causes me problems. Currently I’ll never be a Test Manager and I’m unlikely to make Test Lead. Anything that could help them would almost certainly benefit me.
Autism advocacy is not a zero-sum game. You shouldn’t be viewing it as one.