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12:12pm June 30, 2014
Anonymous asked: I haven't been following your blog for very long, so please forgive my ignorance. Are you nonverbal? I've seen a few posts on it lately. I don't mean to judge whatsoever. Or, do you have a link to your story that I could read (on mobile, searching is limited). I think you're an extremely strong person, and whatever your journey is, you clearly have so much to offer.

I don’t think people are ever 100% verbal or 0% verbal.  I’ve been different levels of verbal at different points in my life, sometimes very verbal (but with other serious communication problems) and sometimes not very verbal at all. At this point in my life, due to autistic catatonia, I am functionally nonverbal, and can only rarely speak with any intention – as in, thoughts matching the words that come out of my mouth.  Twice in the last ten years, once for an hour, once for a couple days, I could say some things and have it mean what I said.  And when I try really, really, really hard I can sometimes say really short things.  (When I found out my father might be dying, I practiced all day long and was able to tell him “I love you Ron” out loud.  But that’s not something I can typically do, it takes an extreme amount of effort and often a stressful event provoking it.)

So mostly I’d say I’m nonverbal now.  And I’d put myself somewhere in the 2-5% verbal range when it comes to communicative speech.  I do sometimes say things that have no meaning at all, just echolalia.  Not that echolalia is always meaningless, but mine usually is these days. 

I’m telling you all this because I don’t want to give you a false idea of my life.  

When I was little, I talked for a very short time, then lost the ability to speak for awhile.  Then I regained the ability to speak, but a lot of the speech was highly echolalic and not all that communicative.  The amount of my speech that meant what I was thinking, versus the amount of my speech that was just me learning to say things that sounded plausible because that’s what I thought I had to do, that ratio was in constant flux.  And then when I was a teenager and autistic catatonia kicked in, I started having longer and longer periods with no speech at all.  And by the time I was maybe 19-21, somewhere in there, I basically had no functional speech.  This can happen with autistic catatonia even to people who, unlike me, had no real speech problems before they get it.  I had complex communication problems even before the autistic catatonia, because my receptive language was very delayed compared to my expressive language and that creates a lot of extremely weird communication issues.  My typing used to be almost as non-communicative as my speech often was.  But through speech and typing and using a lot of strategies from listening to the patterns of words in other people’s speech and books and stuff, I was able to fake better communication than I had pretty well for a long time, it’s just that eventually fell apart.  And sometimes I really did have pretty good communication.  Everything for me is constantly in flux, in terms of abilities, so there’s no straight lines in my story at all, just lots of up and down wavy lines that go all over the place, when it comes to abilities like that.

The poem I wrote called “I am not a word-fish” deals with how I felt growing up learning to “communicate” by speech.  Meaning learning to spit out other people’s words so that people would think I was communicating with them.

And I did that very well.  The psychiatrist who diagnosed me noticed the holes in my abilities, the places where I was passing but not passing well enough.  But not a lot of other people noticed.  People don’t tend to look for those holes.

I wish I could tell you everything, but it’s so long and complicated it could fill a book.

So yes I am nonverbal, but I was not always nonverbal, but even when I was verbal I had serious communication issues that often got overlooked because I was verbal.  I actually communicate better, overall, now that I’m nonverbal than I did when I was verbal.

And, as I said, I’ve rarely met an autistic person who’s 100% verbal, or 0% verbal.  Most of us exist in a continuum from 1% to 99%, and most of us move around that continuum a lot both over long periods and short periods of time.  Nonverbal is a shorthand for people who are not very verbal, usually.  And verbal is a shorthand for people who are usually verbal.  But very few people are 100% one thing or the other.