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!