Another thought on empathy

Yes, the controversial empathy word. Just something that I thought about today while I was driving somewhere:

I am autistic, and I have difficulty when it comes to reading non-autistic people. I find it hard to know what they feel, and sometimes it is hard to understand why they feel the way they do. And personally I also often find it hard to know how to respond once I do understand, because their needs are different from mine. Aha, you would say - I lack empathy.

But then - non-autistic people have difficulty when it comes to reading autistic people. They find it hard to know what we feel, and sometimes it is hard for them to understand why we feel the way we do. And they also often find it hard to know how to respond once they do understand, because our needs are different from theirs. So would you come to the same conclusion - that they lack empathy?

Probably not. Why - does the difference lie in numbers? Because there are so many non-autistic people, their difficulty is not worth noting, and because we are a minority, our difficulty is a symptom of a disorder? I find it hard to get my head around that.

Sharing of emotions indeed

I needn't have worried. The day started off yesterday with me being irritated by my socks, my belt, my shoes, my hair against my face. I was scarcely out of the gate when I had to stop and take my shoes and socks off and put them on again, and put some cream on my face to stop the feeling of hair on dry skin. It was the first hot day of spring yesterday, and I did not like it.

I had an hour and a half to kill in the city before my appointment, so decided to go to a nearby mall and get some needed things, and also to buy myself a T-shirt as the day was turning out hotter than anticipated. In the third shop I went into I finally found a shirt that did not feel synthetic or too flimsy, was an acceptable colour, and really looked nice. I was feeling a little nervous already, I don't like clothing stores, they seem so full of assertive staff and determined women shoppers. And mostly awful clothes. So I started wandering around, surreptitiously trying to find out where to pay for the shirt. It was a huge store, and I just could not figure out where to go. No handy signs saying "Pay Here". No other buyers in a hurry to buy anything so that I could watch and follow them. I saw a counter at last, but soon saw it was just for accounts and admin. By then I was almost crying, and felt like hiding from the staff instead of asking them for help. I knew I would not be able to talk, so I gave up, put the shirt down and fled. I did not want to go to the rest rooms, because I did not want to lose the last control I had, if I started really crying, I would find it too difficult to stop, and then I would be stuck in a cubicle, not wanting to come out.

Luckily I saw a coffee shop that was a little out of the eye, and mercifully rather empty. I sat down at a corner table and asked for coffee, and then also ordered something to eat. And I had a book with me, so I ate and read and tried to stop crying, concentrating on deep breaths. I am so so grateful that the women serving me made no comments and asked no questions. I don't like crying in public, and I cannot handle kindness or curiosity when I do.

I was so unhappy. Why can't I do a simple thing like buying a t-shirt for myself? Why am I unable to ask for help, why is it so hard, and most of all, why am I so scared?

I sat there until it was time to leave for my appointment, not having the courage to go into any other stores. Drove to the consulting rooms, went inside, and started crying as soon as I sat down. No intellectual, cold discussions as I feared. So in the end the fear and upset was worth it, it enabled me to share. We spent some time talking about fear and anxiety, and my feeling that I had failed once again instead of being proud of trying something I have always found difficult. I don't feel brave, it is a nice thought though. We also talked about my fear of looking deeper at my feelings and anxiety, and agreed that we will not try for now, I do not want to spend the precious hour every month being hugely upset and afraid. He has promised to email my some things to read about anxiety, which I am feeling a bit skeptical about - I have read lots about it already, and have an aversion to any 'self-help' writings. We'll see.

Sharing emotions

I am seeing the psychologist again tomorrow and I am worried that it will turn into an intellectual discussion about my feelings and challenges. That is the way it always seems to be. How do I show what I feel? I sometimes feel my two default emotions, and the only ones except joy that I can share or show, is irritation and anger. I wonder if, feeling so uncomfortable showing any emotion in front of others, all the suppressed emotion just come out as irritation when it gets too much?

I am beginning to realise I find it very difficult to name my emotions. Emotions to me are physical experiences, no words attached. And when I try to name the emotion, it either slips away out of grasp, or it turns into intellectual analysing. I've never really thought much about this before. I've been working in the garden now, thinking about different situations and how I felt - and it is so hard. It almost feels as if my brain wants to stop me thinking about it, and the only 'name' I can give to negative emotions is 'I want to get away'. I don't know if that makes sense.

Getting stuck on one question

I have been thinking a lot about my next session with the psychologist. Thinking about things I may want to talk about, questions I may want to ask, things I want to work on. But my mind gets stuck on only one question and I cannot think of anything else:

Will life always be this difficult, will fear always be my companion?

Being liked, and passing

When someone likes me or wants to spend time with me, who is it that they like? The me that passes as normal? Will they still like me if I stop working so hard to pass? Do they even know how hard I work? Will they still like me if I smiled less and asked more awkward questions? Will they like the real undiluted autistic me? The me that does not want to greet people, wants to bite her fingers and rock from side to side, who frowns when she thinks, who thinks all the time, who are unsure and anxious many times, who thinks that people are hard to understand, who are perplexed by the things they do and say, who wants to interrupt people because it is hard to know anyway when it is her turn to speak, who wants to leave places suddenly when the sounds bother her too much, who gets overstimulated and irritated and agitated so often?

I don't know if this me will still be liked or accepted. And not be pitied or avoided. And I want to be liked, that is why I still pass.

Being understood

With the help of my husband, I found a psychologist who are knowledgeable about Aspergers. I had an hour long session with him on Wednesday. During the hours and days leading up to this I felt very anxious and apprehensive. To begin with I felt unsettled because the day would be a break in my usual routine. And then I did not know what to expect at all, I was also scared of being disappointed once again.

I am very glad to say that my fears were unfounded. It is hard to describe what an intense experience it was talking to an expert who understood, validated and knows more than I do about Aspergers. I was close to crying the whole time, but held that in because I did not want to waste the precious time on too much emotion.

I have so many thoughts and feelings running through my head now, I so wish I could hide somewhere alone for a few days to rest and start processing it all.

One recurring thought, accompanied by a wave of emotion every time, is "So this is what it feels like to be understood!" It is overwhelming. I do have people in my life who love me and accept me and try to understand me. It is a blessing, and I appreciate it more than I can express. But in all these relationships I am the expert when it comes to Aspergers. Naturally I usually end up explaining and educating, and mostly in a detached, intellectual way - sharing emotions and fears is too threatening when I am rather sure of not being understood. And these explanations can so easily cross a line somewhere in my head and start feeling like excuses. After a lifetime of believing I am just not trying hard enough, I still sometimes feel as if I am just trying to justify myself. Trying to convince myself and others that I am OK and trying. And when I achieve something, it is not really satisfying first having to explain why it is an achievement before getting some appreciation. I really do not want to hurt my loved ones, I value them so much. But to talk to someone who understands without any explanations, who applauds my achievements and sympathizes with my fears and struggles - it took my breath away.

We talked about many things, and once I have processed more of them I will write about it. It is hard to put my thoughts down now, I feel very emotional and tired.

I want to end this post by saying thank you to my wonderful husband, who cared enough to make this session possible, something I would not have been able to do on my own.

A Positive Conversation

I stole this heading from another blog. Like that blogger, I also had a positive conversation about autism. A dear friend invited me for coffee this morning. I have not been going out much lately, retreating into my own world. So this invitation resulted in as much anxiety as pleasure. To be honest, it was only my aversion to making phone calls that prevented me from cancelling.

But I did go, and it turned out to be a very special visit. As always, my friend and her husband made me feel so welcome and accepted. My usual irrational thoughts like "I have nothing to say that will be of any interest to anybody" faded away, and I had a lovely time. Then without my prompting it, my friend asked me about my blog, and a conversation about autism and my experience with it followed. I cannot adequately express how much this meant to me. I told her, among other things, that I was tired of trying so hard to be someone I am not, and I felt comfortable saying it. I am scared to tell people this, for fear of being accused or suspected of being 'fake'. To be able to say it to an accepting friend with an open mind was such a relief.

I feel calmer this afternoon than I have been for quite a while. My racing thoughts have slowed down a little, and I am intensely grateful for friendship and the gifts it brings.