Autism and the Challenge of Alexithymia

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The Challenge of Alexithymia:

Approximately 85% of people on the spectrum are estimated as having the condition of Alexithymia. For anyone that is not familiar with the condition a good description is linked below.

http://en.wikipedia.org/wiki/Alexithymia

I struggled with Alexithymia, off and on, during the course of my life. The piano helped me gain access and a language for emotions from age 12. I also found it more fully opened a pathway of emotion in my brain that enhanced my verbal speaking skills. My fine motor skills were not good, but never the less, I could play by sheet music well enough to gain a benefit.

I always wanted to create music without a guide, and during a period of chronic stress when I found myself losing all connection to emotions, the result was the music I finally took the time recently to upload to a youtube video format, from a very low quality recording I had off of a dictation device.

Interestingly, part of how I was diagnosed with Alexithymia was when I could not describe an emotion for the music that I suddenly was able to create.

My spouse's brother has a gift of emotional insight. He described the music as "a lonely ghost wandering the earth, not realizing they were dead". My spouse had previously described it as what sounded like "a tortured soul".

I doubt anyone that hasn't experienced Alexithymia could personally relate to the music, in the context of Alexithymia. But perhaps, there is someone out there that can.

Link to the Piano music from You Tube:

[youtube]http://www.youtube.com/watch?v=8SApGpWf2dg[/youtube]

Edit: This is a newer version linked below with increased recording volume, but still does not seem to work clearly on android phones and tablets for some reason.

http://www.youtube.com/watch?v=mkr5RSLmZnI

Last edited by aghogday on 10 Mar 2013, 12:04 am, edited 2 times in total.

I can't hear the audio in the link, even with the volume set to max on my iPad.

Somehow it made me think of a lost wanderer, forever searching and finding nothing,

As for Alexithymia, I'd imagine most people on this forum have some experience with it, even if it is quite mild for them. Autistics have a very high percentage chance for Alexithymia, something like 85% as you said. Personally, I've always had issues with describing emotions, generally using very detached description even when talking about myself. Especially when talking about myself, even - arguing for an issue results in me using more emotive terms than talking about my own feelings. I've been increasingly attempting to be more emotive with some limited success; I'm at least managing to say more than "okay" when I talk about my own state now. Don't know if it'd really be Alexithymia, though, since I am a very imaginative person.

I voted the "lonely ghost" without reading your post. But I think the imagery had something to do with it. It wasn't just the music.

I am DXed with alexithymia and anhedonia.

I think, however, it was the Borderline part of me that most identified with the sentiment of the song (the always wandering around the world, looking for "something," never finding it, constantly being on the move).

Last edited by Tyri0n on 09 Mar 2013, 2:36 pm, edited 1 time in total.

I didn't think about the music representing anything like lonely soul. I thought entirely about the notes and the melody and the rhythm and which parts were pleasing to me and which parts were not and which notes could be changed to which other notes, and there was also picture of music and movement of music in picture. The sensory aspect of the music was the most important to me.

Hmmm. I marked "other".

Honestly, before reading your post, I honestly haven't ever heard of Alexithemia. After reading the wiki description, I would say that I would definitely tend to agree with not being able to easily explain my emotions or know exactly what I am feeling, but I guess that would be something I would need to look into further.

How I felt regarding your music? I'm not sure I really felt anything, but it definitely reminded me of myself... Ill try to explain though I'm not sure if this is going to make any sense to anyone so forgive me if it seems I'm rambling.

I guess if I could put a name on your music it would be "balanced" or "equal"... I guess that's what it made me think of. When I have a problem I'm trying to solve in my head, I sometimes start putting together music in my head, and it comes at me so fast that I have no way of recording it, and because I have a bad short term memory I cant write it down before it lose it. This is nearly exactly what I think of when I'm working through problems. When people see me tapping away, this is very very very similar to what I am tapping to. I have actually tried to piece things together with software composition tools that compare to your music, but I cant seem to get it right. Its multiple rhythms and tempos that all seems to ultimately fit together.

It sounded to me as if someone were skipping merrily through the woods. That's the image I imagined, while I listened to the song. So I voted "happy".

At the time I was creating the music, I had no idea what Alexithymia was, and could not identify the issues I was having with connection with my emotions. I was surprised when my spouse described it as a tortured soul because for me it was stimulating to make the music and gave me what I would describe as a dopamine high similar to when I used to solve math problems in high school.

I have always felt more like an observer than a participant in life, but for decades I found pleasure in that, and never felt lonely from it, instead at times more overwhelmed by the negative emotional contagion of others. So, I suppose if I was a ghost I was not a lonely one.

At the time I was diagnosed with Alexithymia, my adrenal glands were described by the psychiatrist as stuck in the on position from what he described as a hypothalamic-pituitary-adrenal HPA axis imbalance coming from a result of prolonged chronic stress.

At the time my blood pressure and heart rate were also out of sync in what some describe as dysautonomia, and more specifically defined as vaso-vagal pre-syncope, by a cardiologist and a tilt table test. The HPA imbalance resolved itself through rest and time, as well as the imbalance of blood pressure and heart rate. Basically my body repaired itself through a natural process it seems, as there was no medication that could repair what was basically animal exhaustion in the loss of ability to adapt to the environment.

I can remember the psychiatrist saying use emotion for motivation instead of adrenaline. That is when I came more to the realization, that I had lost touch with them, because I could not even relate to how to possibly do that, at that point in time.

Adrenaline was all I knew at that point in time. The closest I can describe that feeling now is the release of adrenaline/endorphins one receives after they hit their thumb with a hammer. But it was almost a 24/7 feeling instead of a feeling that lasted a few seconds. To me the feeling that lasts a few seconds after the hammer is a relief, but that continuous feeling at this point at time in my life is impossible for me to describe in words, or even fully relate to as my mind will not allow me to fully remember it.

There was 10 other segments I recorded on my voice recorder, that I may upload to You tube at some point in time, that through time eventually led up to the result of the last one.

They are much less complex in nature, and much more repetitive in melody. As I listened to them after finding the small recording device for the first time in years, it was tedious listening to the first 10 because they did not stimulate my brain, however on the last one I found myself not being able to predict exactly where the music was going, and it was pleasing at points where the melody seemed to resolve itself. I also found myself seeing a circular motion of notes in my mind.

The only thing that is really sad about the music to me is I developed carpal tunnel syndrome to the point where I could no longer play or type on a keyboard. That resolved itself to the point I could type again, but I am hesitant to play the piano again in concern of losing the ability to communicate on the keyboard.

I was always a visual thinker and did not have a coherent stream of controlled thoughts in my mind. I developed an autoimmune issue where my eyes quit making tears and lost that visual world to pain for about a year in dark rooms, as light became excruciating to me.

Restasis, an eye drop auto-immune modulator, correcting that issue after about 8 months of using it, but during the interim I had no choice but to find an adaptation to navigate my world through coherent verbal thoughts, which I had no idea how to make happen at the start, but it eventually happened with time, where now I dream in words sometimes rather than pictures which is completely different than anything I experienced earlier in my life.

I also dream in text, but that is a visual type of dream generated by the amount of time I spend playing the computer. To me typing on the internet, is sort of like playing the piano, but in words instead of notes.

I was not consciously aware of what note was going to come next on the piano when I was creating music, and I am often not consciously aware of what word is going to come next when I type. The first time I listened to the music I created, I was surprised it made any coherent sense, and I am always pleasantly surprised if I can find coherence in the words I write on the internet.

The music I created to me is almost like a type of EEG of the way communication is expressed by my brain, both in the music and in the words I now type.

Thank you for that response. It helped me to the insight that the central coherence of my communication in writing is similar to the music I was creating. Multiple ideas and statements that sometimes seem to ultimately fit together, at least to me.

When I operated in a visual world of thinking, it was the multiple sensory feelings and images that sometimes seem to ultimately fit together, at least to me.

It gives me a dopamine release of sorts to see the pattern of the two smiley faces lining up in my last two paragraphs, by chance, or perhaps the multiple rhythms and tempos that exist in my brain that find there way to expression of communication on a computer screen.

I can't hear the audio in the link, even with the volume set to max on my iPad.[/quote]

Thanks for that feedback.

I don't use an I pad, and the music seemed loud on my home computer, but if I transfer other music from my recording device on to my computer I will attempt to raise the volume to accommodate that issue, although there is a potential annoying feedback of the back ground noise in doing that, from the low quality recording device that I used, when I created the music.

I was pleased to not be able to hear that annoying feedback with my ear buds on my computer after I transferred the music, that almost made the music unbearable for me to listen to when using the ear buds with the voice recorder.

My sister tried it with an android phone and the volume was also too low, and sounded very distorted when turned up to max, so I will see if I can work on getting that adjusted, in a second endeavor in the future, for mobile devices and I-Pads.

The word that came to mind for me was wistful. It didn't feel completely sad to me, and I definitely didn't get tortured soul.

What came to my mind was that it was hopeful. That things aren't going right at the moment but they'll get better so you'll keep trying.

What I hear either prompts no emotional response or prompts a response too complex for me to be able to interpret. I am not sure which.

Mostly, I enjoyed the sensory experience of listening to the music.

I had to look up that "wistful" emotion in Google. I did not experience the subtle emotion of yearning when I created the music, but I do feel that now that I listen to it from a distance in time looking back.

You provided a word that led me to a google definition to be able to describe what I am feeling now when I listen to certain parts of it.

It was a very hopeful thing for me to be able to create any type of music, and was probably the only thing that kept me afloat in a sea of stress at the time I created the music.

As I listen to it now, and after people have discussed how they feel when listening to it, it helps me define what was a completely unlabeled emotional experience for me at the time I created the music.

I am able to identify all of the emotions that have been described in this thread, in the music now, were I could not do that before.

And also am able to still identify with the sensory experience of listening to it.

That is basically how I felt when I was creating the music.