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.

Conversation and friendship

I recently read something about conversations leading to friendship that really resonated with me, I apologise to the author, I will mention  him/her when I can find it again!

I have always had problems knowing what to talk about when I meet someone. But I have worked hard at it, and learned to ask questions, try to prompt people to talk about themselves and their interests, even make some small talk. All this makes the first conversation with someone a lot easier. My problem is that with most people I meet, every conversation feels like the first one, I just cannot manage to follow up on the first time we met.  Thus every time I meet that person, I feel more awkward and have less to say. For this reason I feel more at ease among strangers than people I have already met.

Other people seem to just have conversations and this eventually leads to friendship or at least feeling somewhat comfortable with each other. I wish I understood this process. I am very grateful for the few people in my life who persevere and somehow ignore this awkwardness. I am glad to say that I do have friends. Not that I ever call them to chat, or drop in for coffee or share much -  even thinking about that makes me feel anxious - but they are people who accept me and my aloofness and keep talking to me and inviting me to visit them.

I believe I can be a very loyal friend, I can be very accepting, forgiving and not judging, and will never gossip or intentionally hurt a friend. I just have a difficult time with friendship 'maintenance' - the calls, chats, gifts, visits and the intimacy that I imagine friends usually experience.

Empathy

Rachel Cohen-Rottenberg has created a new and much needed website about autism and empathy. I will definitely be reading everything posted there, and will thank Rachel for doing this. I often read her blog and she has helped me gain many insights and gave words to many of my unexpressed thoughts.

I have some thoughts on empathy I would like to share. I am not going to attempt to define it, the term has different meanings for different people and people do not adapt their thoughts to dictionary definitions anyway. However empathy is defined or seen, the widely held belief that autistic people lack empathy is still too common. And it leads to so many negative ideas: "they lack empathy" morphs into " they do not care about other people's feelings", "they are oblivious to others' feelings", they do not recognize that others have feelings and ideas that differ from their own" and even " they only care about themselves".

What boggles the mind is that there are so many autistic people speaking out and contradicting these beliefs, and still people and professionals dealing with autistic people and their families hold on to these myths. Why? Is it unwillingness to admit that they might have been wrong all along? Is it that they cannot easily observe the empathy we say we have? Or can it be that too many people are still not willing to really listen to us? (Making a mental note to explore this in another blog post.)

I may ramble from this point on, trying to make sense of my thoughts, some that have never been expressed before.

I admit that there are times when I do seem to lack empathy. I do retreat and shut myself off from others' feelings. But this is a self preservation tactic, not an inability to relate. Being exposed to emotions can be exhausting. And overwhelming, since I can have difficulty regulating my own response to emotion in others. I recall a recent incident. I walked my daughter into school one morning, and left as the bell rang. As I rounded a corner, I came upon a child furiously wiping away tears and trying to compose herself before entering the building. The encounter was unexpected for both of us, there were no barriers up between us. Just the emotion. We stared at each other for a moment, and then she ran into the school building. I ended up in my car in the parking lot, crying, gasping for breath, on the edge of having a panic attack. This shows that I have to protect myself; reactions such as these are very upsetting and many times probably out of proportion to the emotion perceived.

Sometimes the emotion in a situation is not that easy to read. People often hide their feelings behind a social mask. Couple that with my difficulty in reading people, and I am left with the confusing sense of something being wrong, but not knowing what it is. That causes discomfort and anxiety, making communication even more difficult than it already is. I find small talk and conversation very hard when there are undercurrents I can feel but do not understand. So someone may feel the need for empathy in a conversation, and I just become more and more withdrawn due to my confusion and frustration. This certainly may look like a lack of empathy.

One specific thing I cannot handle at all, is candid camera type of shows. The intense discomfort I feel when I see someone being embarrassed or humiliated, even if only temporarily, is almost like pain. I remember the very first candid camera film I saw. I was about 8 years old, and we were shown the film in the school hall. The kids around me were laughing, and I felt just horrible. I remember crying and wanting to go home, and this upset stayed with me for weeks. As an adult I still find it painful, even while knowing that my reaction is over the top. I cannot separate myself from the embarrassment I see, I make it my own and feel awful. I have read that many other autistic people feel the same way about these kinds of shows, which is reassuring in a way, I have always thought I was alone in feeling like this.

I have many more thoughts, too jumbled at the moment to write down. They will have to wait for another post!

Therapy, or validation?

I often wish that I could find a good psychologist or counsellor to talk to on a regular basis. Recently I have begun asking myself what the purpose of this therapy would be – which problems do I want to work on? What would the goal of this therapy be? I have thought a lot about this, and so many times the word 'anger' comes into my head. But it is vague, and I probed deeper. Why am I angry? Do I just struggle with anger management? Have I not learned the appropriate skills to deal with frustration?

No. I don't think that is what it is. It is not just a skill I lack. Neither is it a disorder of some sort that has its origin in my head somewhere. I do not need someone to try and teach me skills and I do not want to discuss my problem with anger. What I need is VALIDATION. I need someone to really listen to what I have to say about my struggles and my fear and my anxieties and depression – and then to confirm what I know is true – that it is no wonder that I react this way to the world. That it is normal to be anxious when you live with so much fear and uncertainty in a world that is often very hard to understand. That it is normal to feel depressed when the loneliness and the feeling of never being really understood threatens to overwhelm you. That being who I am and what I am is OK, and that all these problems I have are normal reactions and not isolated disorders that have to be treated and cured.

I was 16 when I had to go for counselling the first time. I was diagnosed with depression, given anti-depressants and had to go for a few sessions with a psychologist. I found it an interesting experience on an intellectual level, but it made no difference in my life. I did not have the words, the insight at 16 to explain my feelings. I remember him asking me what has happened in my life to make me this sad. And how did it start? I did not have the words to tell him. But I can remember clearly the evening the so-called depression started. It was one of the first days of the new school year, I was sitting on the floor in my room covering school books when I was suddenly overwhelmed by fatigue. Overwhelmed by the thought 'I just cannot do this any more'. I believe it was simply the result of years and years of fear and loneliness and being misunderstood.

I lived with so much fear and anxiety for so many years, I think it was no wonder my brain finally decided it was enough. As a child, the sound of fear was the first bird calls very early in the morning. Waking up and hearing the birds signalling the start of yet another day was enough to make me feel nauseous. I felt like that every single school morning for years and years. The smell of fear was the peculiar smell of sandwiches and school bathrooms that filled the school halls. The release from fear was the sight of my mom's blue Volkswagen waiting to take me home.

So whatever you want to call it – depression, fatigue, a breakdown – I believe that was a very normal reaction. Not a chemical imbalance that had its origin in my brain because my brain was somehow flawed. But that was the way my depression and anxiety was seen by all the therapists I saw over the years. They saw a flawed individual that they needed to treat with medicine and teach to think and be more positive. And my reaction to this was anger. Anger at being misunderstood once again, anger at not being heard, anger at a flawed world who distrusts differences and turns it into diseases. Therapy was supposed to help me, but mostly it made me angry.

Only once, the opposite happened. I saw one therapist for just about two months, and those two months worked magic. I was 20 years old at the time, and could not yet make eye contact with anybody for more than a few seconds at a time. But I could look this man in the eyes while he listened to me, and it carried over to other people. Those months motivated me to work on eye contact. And there were no anger. Why? Because I felt validated. I felt that the therapist was interested in me, and liked listening to me, and most important – I did not feel like he was trying to fix anything, treat anything, identify problems, teach me anything.

And that is what I want. Now that I have the words to talk about my childhood experiences and my current struggles, I want validation, not treatment.