"What’s wrong with you?!"

Alexithymia is defined as the "...inability to identify and describe emotions in the self." (see http://en.wikipedia.org/wiki/Alexithymia) for a brief overview on the condition. Many people with Aspergers Syndrome are described as lacking empathy and lacking feeling, including myself, but this is, as I have said before, rarely the case. The feelings are there, we just have trouble associating these emotions to others and identifying them in others. Also, those with Aspergers often have emotions, we just have difficulty relating to them when others express them. In the words of the immortal Mr. Spock, "They are just not logical."

I have wondered, however, if my own difficulties with emotions is because of my Aspergers, which is very mild according to my "supports" and my family, or due to the co-morbid existence of Alexithymia. I often do not recognize emotions in others except through explicit signs (crying, sniffling, explicitly telling me, etc.). Also, I have difficulty identifying, in myself, when I am experiencing an emotion, much less identifying which emotion I am experiencing. In fact, I never used to understand emotions at all, and until my Aspergers' diagnosis 2.5 years ago, I just described myself as, "not having any emotions at all."

Yet, something happened this morning that really made me consider what was really going on with me. Is my apparent lack of emotion, and inability to control emotions due to my Aspergers Syndrome or an undiagnosed case of Alexithymia? This morning, I heard of the passing of someone dear to a number of people whom I am close to. This person, whom many people in the room had known for many years, was one of the kindest, most sincere, caring, TRUE people that I have met in my entire life. I only had known them for a year, but many of those in the room had known this person for upwards of 20 years. There was, of course, a lot of sadness in the room. Yet, I was only able to identify this emotion due to the auditory and visual clues of those around me. I felt no emotional response to this news, despite the fact that I had known this person. My only response was to close my eyes and do some deep breathing. Later, I spoke to someone to verify that this was (1) an appropriate response to this news and (2) that I was not just some sort of monster.

This was a lot like other times in my life when people close to me passed away. My grandfathers passed away when I was 9 and 29. When the second one passed away, everyone at the school I was teaching at expressed their sympathy, but I could not identify exactly what I was feeling. It took my wife and my co-workers pointing out that I was walking around in a fog, and seemed "out of it" for three weeks before I recognized that something was wrong, but I still could not identify that it was sadness. I suffer from depression - it took me a long time to identify something was wrong, but it was my actions rather than my feelings that told me there was a problem. I thought, though, the fatigue was because of a physical illness, not emotional. In college, I broke up with a girlfriend and spent hours convincing her it was OK, having no emotional response to the charged situation - that is until I woke up crying at 3:00 AM, not knowing that I was upset about it until then.

So, in looking into it, I have realized that I am both an Aspie and Alexithymic, however both of these conditions are, as far as I can tell, mild. My Aspergers is mild enough that it is difficult to notice it unless I am stressed out. My Alexithymia is, in my opinion, mild, since I do not exhibit at least one of the symptoms of it:

1. difficulty identifying feelings and distinguishing between feelings and the bodily sensations of emotional arousal
2. difficulty describing feelings to other people
3. constricted imaginal processes, as evidenced by a scarcity of fantasies
4. a stimulus-bound, externally oriented cognitive style.

I fit into categories 1, 2, and 4, but not 3. People have told me that I am creative and imaginative. This is partly because, due to my Aspergers, I can see the world differently than other people. This unique perspective gives me ideas that others might not have thought of. However, I rarely fantasize about things. I am a realist, a real-world Mr. Spock.

On the other hand, I DO have emotions, I just have difficulty recognizing them. And, whether is it neurological, like my Aspergers, or psychological due to holding down my extreme emotions, I don't know. Plus, as my friend said when I spoke with her, this is just "...part of who (I am), and that's OK." I never really had responses to things like this, and I should look at this as allowing me to "...steady the ship in times of turbulence." Sometimes, it makes me feel like an anchor making it even more unbalanced and, on occasion, "swamping the canoe," but I think I need to look on the bright side of things.

So, I will take this time to reflect on my issues and try to make lemonade out of the lemons of my life, Alexithymia and all!

It’s the Little Things

You know, it's the littlest things that often affect us the most. Kind of like in War of the Worlds where the germs kill off the Martians that mankind can't even hurt! Recently, I went to an audiologist for a hearing test. I've had tinnitus for years, a result of listening too loudly to my music while mowing the lawn as a teen, and I'd noticed that I'd been having difficulty hearing people adequately. At least, that's what my wife said - I'm not sure it wasn't selective hearing :-) However, I did hear an increase in the "volume" of the tinnitus. My first visit to the audiologist back in March, I was unable to get the hearing test done due to blocked ears. 'Maybe that's why I'm having difficulty hearing,' I thought. Well, I got my ears cleaned out, and found no change in my hearing. So, I went back in July to the audiologist and found out that my hearing was degrading in both ears at higher frequencies. This was, in my left ear, at the borders of acceptable hearing, although a little more decline and I would "officially" have a hearing loss in that ear. In my right ear, I "officially" had mild sensoneural hearing loss at higher frequencies.

In discussing the results with the doctor, she asked about the results. Some people have mild hearing loss, like I do, and it really bothers them. I seem to fit into this category. Others have such severe hearing loss that, in her words, "...it's amazing they don't seem to notice it." In my case, how is my mild hearing loss in one ear and borderline loss in the other ear affecting me? Well, first and foremost, I have trouble hearing people. This results in my not responding on occasion when people speak to me, especially if I am not looking at them. Additionally, if the speaker is female, or a child, their voices tend to be in higher registers, therefore I am less likely to hear them (hence the supposed 'selective hearing' of my wife). This then causes some people to get upset at me, thinking I am ignoring them (like my wife), causing tempers to flair and (with my difficulty controlling my own emotions) on the rare occasion, causing a blowup.

So, WHY is a MILD hearing loss affecting me so severely? Well, it turns out that this is probably a result of my Aspergers Syndrome. Discussing my AS with the audiologist, she hypothesized that with my AS, it takes me a little time to process things that people say to me, especially with my social skills issues (lack of Theory of Mind). This delay was not noticeable when I was younger, since I heard them fine, and so even with the processing delay, no one, not even me, noticed that it took me a millisecond or two longer to respond appropriately. However, now it takes me time for my brain to decipher what it heard. Added to the processing delay, there is now a noticeable delay in responding appropriately, causing me to (subconsciously) get upset (as well as other people) with my inability to react to people.

In thinking about this, it also explains a couple of other issues my wife has noticed. She has told me that I have changed since we've met. First, I used to socialize more when we first met and got married. Now, she says I don't socialize as much, and when I go with the family to parties and get-togethers, I often "go hide," in her words. I think that this is true, but now I think that my frustration with hearing people causes me to avoid that large group interaction more than when I was younger. Being in a group of people, not only is it more difficult to hear someone who is interacting with me, but the extraneous discussion and music around me causes even more delay in processing what I've heard! So, subconsciously, I've grown to dislike larger gatherings, and even avoid them.

Also, my wife says that she has to explain herself to me much more frequently than she used to. This frustrates her to no end. I used to just understand what she was asking, in fact, we used to complete each other's sentences. Now that I think about it, if I am having difficulty hearing and processing what she is saying to me, I tend to repeat what is being said in the form of a question (you know, kind of like Jeopardy "So, I need to do this, right?").

So, despite my knowledge of Aspergers from both having it and working with students who have it for 11 years, I am still learning about how it affects adults, and myself in particular. The affects of aging of those with Aspergers, especially those in whom it was not diagnosed in childhood since they were high-functioning enough in school for it to not affect their education (hence the IDEA law did not affect them) seems to be exponentially difficult, creating mountains out of what seem to be anthills. In me, this can be seen in my mild hearing loss and its affects on my social and family life.

This is also an effect of our societal avoidance of differences. If I had not noticed the change in my hearing, I would not have recognized the cause for a number of my issues. Yet, we as a society, tend to avoid being labelled as "abnormal," and try to avoid seeking diagnoses. Both my Aspergers and hearing loss are aspects of my health that are making me who I am and causing me to change how I am perceived by others. By getting these diagnoses, I am on my way to being more accepted, and understood, rather than just being labelled as a "Grumpy Old Man" and a "Hermit-Loner."

Until next time - Dave