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Alexithymia

Luftmentsch

If I wanted to make an argument for my (I stress MY and not anyone else’s) experience of autism being more of a disability than a difference, I would focus on my alexithymia (difficulty experiencing and understanding emotions). This is not something imposed on me by an ableist society, it is something in my own head, where I can’t understand or even know what I’m actually feeling in a given situation. To put this in perspective, sometimes I find myself having to prove to myself that I love my loved ones, because I’m not sure that I feel anything. I have to look at my willingness to make sacrifices for them, the amount I think about them when they’re not around, the fear of losing them and so on to prove to myself that I must feel something positive, I just can’t always hear it.

I find that negative emotions, like loneliness, depression and anxiety, make themselves heard a lot more than positive ones like happiness, love, excitement or even equanimity. Lately, I’m planning the second half of my wedding (I had a civil wedding last year so my wife could get her visa, but we’re not “fully” married until our religious ceremony, which will be in May) and the stress and anxiety of wedding planning is audible (so to speak) in my head so much more than the joy and excitement. I know wedding planning is stressful even for neurotypicals (and we aren’t even having a big wedding!), but somehow it seems easy to focus on the negatives and forget the positives are there at all. I have to work hard to see the excitement and happiness that is there; I can’t just passively experience it like a “normal” person.

I don’t really know where I’m going with this. I don’t really have a question, unless it's to ask if anyone else experiences this. I am lucky enough to have people around me who accept my autism and mental health issues even when they don’t really understand them, but I’m scared to talk about this for fear that they’ll think I’m saying I don’t love them, or that they just won’t understand at all what it means not to feel or understand my own emotions. I’m not sure I really understand it, and I’m me! And I know not all autistics experience this, which somehow makes it even more isolating. Some have intense emotions. I have intense depression or anxiety sometimes, but I'm not sure I can imagine what intense joy or excitement would actually feel like.

Parents

  • I get it.

    As for the disability v. difference argument, that is for each of us to decide for ourselves.  Is it society or our genes which dis-enable us?  Are there aspects of our autism that are a positive advantage to us, are there others that cause us pain?  It's different for each of us.  Personally, I regard my autism mostly as just being different and I'm happy with that, until I'm in a doctor's surgery and I cannot cope at all and no one gets it.  Then I am not functioning and am disabled!

    I also get the alexithymia too.  One of the biggest revelations for me through the diagnostic process for me was that I was not detecting or naming my emotions in the same way as other people do and for half a century had not realised that other people do it differently.  My interoception tells me very little.  I work out what I feel much in the way you describe.  Mostly it works for me to analyse a situation and its dynamic to work out what it is I'm feeling.  I also have a very good friend who is able to ask the right question in the right place to help name it.

  • in reply to Dawn

    How do other people describe emotions? This is another example where I think there should be dialogue between autisyic and allistic, so we can see how each approach it.  I think for me unless it's obvious, I don't know how i feel. In the past it was usually default anxiety. Now it's probably "ok" but in reality I don't think it is. I'm not ok a lot of the time.

    I think there are so many ways to describe emotions,  it's often difficult choosing the right word to explain how I feel.  And I have a good vocabulary.  I wonder if this is some of it....things needing to be "correct" rather than a general sense.

    Last week I felt anxious about something.  But I knew everything about this unknown thing would be ok and wasn't worried at all. Then I wondered if it was actually excitement. I still wasn't sure.

    I do understand when you say about analysing situations.  I have even done this in situations with my closest loved ones because I didn't know if the situation was awkward or not. I had to go through the analysis to decide that actuslly everything was OK. After that, I felt more at ease. 

    I think I can often pick up on say, the feeling of a room, or can be quite emotive around others who are feeling strong emotions. Like a sponge. It's all quite contradictory isn't it.

  • in reply to Deleted User

    You seem to speak in my emotional dialect.  Good to hear - it's weird and VERY hard to explain to others.....but I am pretty sure I hear you right.

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