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.

Expressing Joy

I read something on another blog about how uncool it is to be excited. Unfortunately that is true for too many people. When you look at young children, you see joy in motion. They are not inhibited, and it is often so easy to see that they find many things immensely exciting - they shout and laugh and run and dance. But somewhere during childhood things change. Such display becomes very uncool, and what child wants to be seen as uncool? Look at teenagers - it often seems that being blasé and bored and unenthusiastic is what that age is all about. I know that that is mostly a front, put on to impress your peers with your sophistication (only speculation, but that is what it looks like). But it seems such a shame that the little fires of joy are being put out so often because it is simply not cool to show excitement and wonder.

And that carries over into the adult years. It is fine to calmly appreciate something, but shouting for joy will probably be frowned upon in most circumstances. I allowed myself to be inhibited in this way for too long. And I am very happy to say that with the help of my children I am letting go of this particular inhibition. I do have an enormous capacity for joy that seems almost childlike, and I am not going to hide it any more. For me joy is an intense physical feeling, and standing still while experiencing it is almost impossible. Of course it is easier at home where no-one is looking on. I have a little dance that I do when I really enjoy something - almost like running in one place. My kids love it, and I love it that they love it. It is also easier to show when I am out and about with the kids. They are still young enough to mostly not care what others might think - and we have lots of fun on outings. I am glad to say that I do not care what strangers think about a 42 year old woman who jumps up and down, hugging herself and laughing because she finds a fish or a bird or a cloud incredibly beautiful. That physical surge of joy I experience is a gift, and I plan to celebrate it fully. I will savour the times when I feel the joy start in my tummy and rush upwards to let me catch my breath and spread into my arms and legs to make me dance.

I do know that my kids will grow up and will want to look cool in front of their peers, and that they will probably find me very embarrassing, but I hope to instill in them the knowledge that life is full of beautiful and exciting things, and enjoying it to the fullest is not uncool or wrong. Life is also full of pain and struggles, we simply have to magnify and celebrate the joy we are so privileged to feel.

Being alone

When I am alone, I am not

selfish
self-absorbed
unfriendly
untactful
weird
fake
abrupt
sulking
defensive

None of these labels are relevant when I am on my own.

I like being alone.

That little voice in my head

I know it is not a good idea to only read and dwell on information and perceptions that agree with your own beliefs. It strengtens bias and creates polarization of perceptions and beliefs. But I am contemplating doing just that. When reading blogs and discussions about autism, neurodiversity and the search for a cure, I prefer to look at things from all possible angles. I like to widen my own perspective, and want to learn from others. I am very aware that I can see only a small part of the picture. Thus it is really fascinating to read the wide variety of opinions, about the personal journeys of struggles and joy and discovery and challenges and victories.

But I have a vulnerability that is threatening to imit my searches and interest. I have lived most of my life without a diagnosis, and with the firm belief that I am just a weakling, a failure, lazy, irresponsible, untrustworthy and too scared to really live. It is very very hard to silence or ignore that voice in the back of your head after hearing it for so long. And now when I venture into the debate about autism and Aspergers, every so often I come across the rather wide spread opinion that I am really a fake. Because I was not diagnosed as a child, managed to be successful in school, obtained a degree, got married and have children - surely saying I have Aspergers is just an excuse. An excuse for not facing up to my responsibilities, complaining that society does not accept me, a handy excuse for not standing on my own two feet, an excuse to complain about my own paltry struggles.

And every time I read these well articulated opinions, the little voice in my head starts shouting "I told you so!"

Why not stop reading? Because in these online communities, I have found acceptance, and every now and then the discovery that my experiences are not unique, I have found understanding and the opportunity to talk about things that I find infinitely interesting but cannot discuss elsewhere. The temptation to stay within my comfort zone here is huge, but I cannot. I will keep reading as widely as possible, and fight this stubborn voice in my head.

internal dialogue

don't fold your arms - smile - no, don't frown - greet the woman looking at you - no, with an audible voice - put your handbag down - is that an appropriate place? - deep breaths - ok, what now - can someone please tell me what to do - relax your hands - what am I supposed to do now - the music is so loud - move, do something - smile - where should I stand - everyone looks so efficient - hands are sweating - how long before I can leave - I feel in the way - "hi how are you!" - "fine thanks and you" - hate it - don't feel fine - don't clench your teeth - please tell me what to do - why am I here - smile - why is everybody talking so loudly - calm down - deep breaths - don't cry - can someone please help me - I want to go home

Meltdown hangovers

I have coined a new term, just for myself – meltdown hangover.

I don't have frequent meltdowns. I am grateful about that, because they are draining and scary and always leaves me with this hangover. The ones I do have are always in private, and it is not something I am ready to share much about, it is too personal. And somewhat embarrassing.

But what I can share is how I feel afterwards. I think drugged would be a good word to describe it. My brain feel slow and foggy, I am more clumsy, and I feel exhausted – everything is an effort and I have to concentrate to keep moving and doing what I am supposed to do. Sometimes it feels like my hearing is affected, and there is almost always a lingering headache. It would be easier just to sleep in a silent and dark room until I feel better. Trouble with that is – the hangover often lasts for at least a day.

This may be one of the reasons why I hate crying. Crying needs to be controlled, because if for some reason I am already feeling overwhelmed or have sensory overload, crying can easily escalate into a meltdown. One preventative measure is staying around people. I cannot lose control in front of others, so that helps me stay calmer. Deep breaths, concentrating hard on something else, furiously cleaning something or digging in the garden, it all helps.

You might ask why keep the lid on all these intense feelings? After all, a good cry is supposed to help you release stress and feel better. Unfortunately I do not experience it like that. Losing control is very scary for me, and I do not feel better afterwards.