I am going to be starting another blog topic series of posts, probably. This one is about speech. I haven’t really written a lot about my experiences of speech in recent years, but things have changed in two major ways.
One is that I’ve unintentionally developed a small amount of speech that actually works.
This is not enough for me to consider myself a speaking person. But it’s more than I’ve ever had in my life. By which I mean, even when I sounded much more fluent than I do now, I never had a consistent set of words that would communicate my thoughts. I didn’t have consistent anything. I now have kind of a consistent baseline that’s communicative. As usual with these things, I’m discussing what’s really happening for me, not what appears on the surface.
The range is very limited though. I’ll get into what it is later because I think that’s important information for other people with speech problems. But for instance, it started out with just cuss words and words that were highly emotive. That’s still my strongest set of speech. Also things you would say to a cat. And what I call ‘corner words’, which will probably require a lot of explanation. But this is all highly limited and narrow areas with high walls around them. This is not something where I can substitute it for typing and have it work. Instead it sort of enhances the typing.
Most people I know who type to communicate and are considered non-speaking actually have some amount of this kind of speech, by the way. It’s just not enough to use as your main way of communicating. Very few people are 100% speaking or 100% nonspeaking, and which one you’re considered seems to vary a lot. And depend on far more than what speech you have.
So… the other thing that’s happened, and that I’m more interested in discussing in some ways, is what I call emergency speech.
It is not voluntary. I can’t turn it on and off at will. It is not frequent. It has happened a handful of times in the huge amount of years I’ve spent not speaking. It does not always happen even when it could be very useful or even life-saving. But it does happen sometimes.
And that is where i gain fluent speech for anything from seconds to weeks, always in the context of a medical emergency of some kind.
Again I can’t emphasize enough, this has happened a handful of times. This is not something I can turn on and off at will. And it doesn’t even happen every time it’d be useful.
And it does something horrible to my brain — well lots of horrible things — that I really want to discuss, because it’s clear that fluency of that level only happens by cannibalizing large parts of my brain functioning. In ways that are spectacular and potentially dangerous.
And I think that’s important to document.
I think it’s important to show what happens when someone’s brain forces the issue of doing something that it really has no business doing.
Because it’s ugly as fuck.
I used to just go with it and figure my instincts knew best, but at this point I am doing my best to shut it down whenever it happens, because the results are pretty terrifying.
And I think that’s important for people to know.
Also, this is not an unheard-of phenomenon. I have spoken to researchers about it. And I’ve noticed it in both official literature, and in accounts by parents.
One of the most terrifying — especially now that I know the consequences of emergency speech long-term, but even before that its as terrifying — is these parents who’ve discovered that their children who can’t normally speak, speak more fluently and are more social when they have high fevers.
What’s terrifying is that given the world of disability parenting and autism parenting in particular, instead of seeing this for what it is, there’s a group of parents who see this emergency functioning mode as a good thing. And therefore attempt to do things to give their children high fevers.
Like. Not only is that abusive and unethical and medically dangerous. But also forcing a child to function in emergency mode — especially while sick — will do terrible things to them, especially over the long term. And nobody will connect the dots because nobody really gives a shit about the effects of overtaxing people’s limits. And emergency mode is all about going beyond your limits for a short time — like a mother lifting a car off a child despite not normally having the strength. You couldn’t and shouldn’t do things like that every day, they happen only in emergencies for a reason.
Anyway I have a lot to say about speech. And I haven’t really written a lot on the topic and on the changes I’ve been through in recent years with baseline speech. And I haven’t written about emergency speech either. So these are both broad topics that I want out there mostly for the benefit of other people experiencing them. I’ve always benefited from other people describing their experiences of things, so my intent in writing about this is to possibly benefit other people in this same way. And also to warn people of the dangers, because there are actual dangers here. I didn’t realize how dangerous emergency speech is until I got stuck in a cycle where it kept popping up long after it was sustainable to continue.