Who Am I?

I Use My Words Redux – Inconsistent Ability

Posted: January 26th, 2020 | Author: | Filed under: Personal | No Comments »

In 2016 I wrote a post, I Use My Words (Except When I Can’t), just a few weeks after receiving my autism diagnosis. I’m not surprised that it’s one of the first things I felt compelled to share. It’s something that has plagued me my entire life completely without explanation. It’s hard to describe how intensely I worked and still work to keep it hidden. Like so many things, I even tried to hide it from myself. There are so many things I felt I had to put away as best I could. I have a lot of empathy with the CW Braniac 5 character’s “little boxes” for that very reason. The diagnosis and continuing therapy since then has been gradually opening some of those boxes.

There is a lot I didn’t say in that early post. Some of it I hadn’t yet let myself see and understand. Some I still couldn’t articulate. Although it may not seem like it, I understated both my ability and my deficit.

I was completely nonverbal until I was three years old. However, when I began speaking, I spoke in sentences. I skipped over all the typical stages of early spoken language development. I still had a lot of dropped and substituted syllables that made it hard for anyone other than family members to understand me. Speech therapy cleared those up by the time I was 5. I continued to receive a lot of negative feedback after that though, especially from peers, because when I did speak I often spoke in something of a monotone or a sing-song voice. I did not have typical inflection. I also developed a lot of what I would now call verbal stims, the stereotyped and repetitive use of language, including immediate and delayed echolalia. To be honest, I still experience that a lot. I’ve just learned how to hide and disguise my stims and echolalia well enough that people rarely see it or take note of it even when they do. And the times I do slip up around people in ways they notice it usually just goes in the “quirky” bucket.

I began serious work training my voice when I was 9 years old in the 4th grade. My mother had tapes and a cassette recorder. I sat with it for hours listening to the instruction tape, then recording myself and playing both back, and trying again until the two aligned. The tapes started with vowels, moved to dipthongs and syllables, and then words, phrases, and sentences. By the time I worked through them all, I had trained my voice to American standard pronunciation. My mother also had oral interpretation tapes, with which I began my work toward consistent inflection and tone.

However, when it comes to texts, I was hyperlexic. I don’t remember learning to read. I don’t remember a time when I couldn’t read. My mother figured out I could read within a few months of the time I began speaking, but I suspect I could read before I ever spoke. And when I say I could read, I don’t mean I could read some things that gradually grew and expanded over time. I mean I don’t remember ever picking up a book that I could not work through. I read faster the older I got, but I wouldn’t say it felt like my reading level ever increased. I found it soothing to sit with a dictionary and go through pages looking for words I didn’t already know. I wrote about being tested by a neighbor after 1st grade and testing at the 12th grade reading level. It’s probably more accurate to say I hit the maximum scores on the test instruments she was using. I did that routinely as a child.

I’ve tried to explain how it feels to “lose my words” in therapy many times, but it’s something I find extremely difficult to articulate in a way I feel communicates it to others. A couple of sessions ago, though, it happened for the first time in therapy. I don’t know why. That’s part of the problem. There’s no clear cause. There are no consistent conditions. Therapy is one of the few places I feel almost safe. She did not push me to speak. She was very patient, gave me space, tried different things, but did nothing to make me feel unsafe or threatened. It’s been a difficult few months for a lot of reasons and I’m sure that was a factor. But why it manifested that morning in that setting, I still have no clue. I was not completely unable to speak the entire session, so it wasn’t the absolute block it sometimes is. Last session my therapist told me I was able to get out 4 sentences over the course of the 50 minute session. I had felt like I had verbalized more than that, but it’s probably because I was working so hard attempting to speak.

My inconsistent ability is and has always been a major problem for me. I am frequently extremely articulate. And most other times, I seem to speak at least more or less normally. That creates an expectation from everyone who knows me about my ability. And even as a baseline, people expect others to have little problem speaking. For the most part, people do not seem to struggle just to speak, struggle with the process of making the different components work in a way that creates the sounds of speech. In my daily experience that means when I do not respond verbally as people expect, they interpret my silence as some form of refusal to speak. I’m angry. I’m blowing them off. I’m giving them the cold shoulder. I’m giving them the silent treatment. None of those things are true, but my dramatically and even wildly inconsistent ability creates expectations I’m unable to reliably meet.

I don’t have any answers. I wish I did. It’s not the only area in which I have inconsistent ability, but it’s probably the one about which I’m always most concerned. And this illustrates the problem with functioning labels and autism. Even in an area as basic as simply speaking, my functioning can’t be given any single rating. At my best I can outperform the majority of people. At my worst, I can’t speak at all. And my ability at any given moment can fall anywhere between those two extremes.