Learn and Adapt: On Dealing with Increasing Communication Issues

The last few years have been interesting, to put it mildly. A series of events, frustrating struggles, and worrisome symptoms put me on a path of self-discovery that has been helpful in understanding much of my life and why I struggle with certain things. Overall, it has been helpful, but it hasn’t been easy.
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I have already spoken at length about being diagnosed with autism at 38 following a burnout severe enough to cause a “regression.” I have talked about increasing issues with being able to speak, and sometimes even write, which drove me to visit doctors, receive specialist referrals, and undergo numerous tests that found a Chiari malformation and hEDS without giving answers about the cause of my communication difficulties. As it turns out, all we can really do is eliminate any physical causes of the symptoms and then take our best guess at what is going on based on similarities to others with similar experiences.
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There are no tumors, no obvious neurological damage, and no evidence of deficiencies, diseases, or injuries commonly known to cause similar communication issues. They are not due to anxiety or specific situations, so situational mutism is out as an explanation. Our only option at this point is to conclude it is most likely related to being neurodivergent or, less likely, something not so commonly associated with these specific symptoms.

So, I began looking into stories from other autistic individuals who are sometimes speaking and sometimes non-speaking. In doing so, I learned there is a huge spectrum of semi-verbal people out there we don’t hear much about, from those who speak very little to those who speak most of the time with some level of difficulty or lack of fluency much of the time.

The more I looked into it, the more a big chunk of my life began to make a bit more sense. I’ve mentioned before how I never realized I had non-speaking episodes until I was an adult because I so rarely wanted to speak at all. I only began forcing myself to speak more often because I kept getting forgotten for lunch breaks at my first regular job. After a few years of doing that, I almost began speaking compulsively out of anxiety.

Looking back, I have noticed a pattern with the amount I speak or write in a given day and when I have increased difficulty with fluent speech.

The times when I speak little, I often write far more. When I find myself needing to speak often, I begin having difficulty writing and/or speaking after a while. I find it’s a lot like spoon theory, but rather than “spoons,” I seem to have a limited number of words for the day.

Like with the “spoons,” it all centers around energy. Translating our thoughts into words takes energy. How much it takes varies based on stress levels, environment, the amount of focus required, and the method of communication used. For instance, writing takes less energy than speaking for a casual conversation because you are just translating the concepts into words rather than adding in the factors of nonverbal communication and tone. Yet, formal writing for articles or storytelling takes a lot more focus than a spoken conversation the majority of the time. The more complex the ideas being translated are and the more important tone, expression, body language, or grammar and word choice are, the more energy and focus it takes.

Understanding this, it is little wonder my most productive years writing were the ones back in middle and high school before I began forcing myself to talk more. No wonder my ability to work on professional writing or fiction diminishes when I need to speak more than usual. It also explains why I began having increasing issues with non-speaking episodes or worsening fluency during my busiest times freelancing.

In short, I have never been as “fully speaking” as I thought. I have always been semi-verbal, I just didn’t know what that was at the time. I just saw myself as quiet.

I’ll be transparent for a moment. It’s taken me weeks of chipping away at it off and on to complete this post. In that time, new developments have happened. Late in the evening on March 12, I went non-speaking, as has become my normal over the past year. But this time, I did not regain the ability to speak the next morning. That ability did not return until midday March 20, though I had to fight through a severe stutter to say anything.

Over the next few days, the stutter seemed to be improving a little at a time, but on into the afternoon Friday, my ability to speak at all cut out in the middle of a sentence and has yet to return. Along with this, I have been experiencing a lot of peripheral nephropathy in my arms, legs, and face as well as sporadic, involuntary movements of my arms and head. Whether this is connected at all remains to be seen, but this is the first time such has coincided with a prolonged non-speaking episode.

My reasons for sharing are two fold. The experiences of other neurodiverse individuals have helped me far more in understanding why certain things are difficult, uncomfortable, or downright painful over the past several years. So I tell my own on the off chance it could help someone else.

Secondly, it is not to make an excuse but to perhaps explain why there will likely continue to be large gaps between posts here and publications, at least for the next few years. As mentioned before, we are a homeschooling family. Homeschooling requires a great deal of talking, whether physically or through a text-to-speech app as we have been having to do for the past couple of weeks. My first priority is my children’s education, so if I only have so many words available for use in a given day, that is where they will be used.

Thank you for “listening.”