Develop enough courage so that you can stand up for yourself ...

... and then stand up for somebody else. – Maya Angelou

A few days ago, an old acquaintance in Munich wrote a small article about egoism in her Facebook, which caused a few insights for me, namely about why autistic people are often perceived by others as precisely egoistic, narcissistic and anti-social up to emotionless and empathy-less.

Her definition of egoism is as follows: it means a weak character. An egoistic person is someone who not only thinks of himself first, but also thinks only of himself, who does not notice the others at all, and if he does, looks away again. Often there is also a good portion of cynicism, and cynicism is broken idealism. That is my definition.

But when I, as an autistic person with this invisible disability (and there are situations and moments when my neuronal and sensory peculiarities are *dis-abling*), meet with a friend in a café for example… and the music blaring from the loudspeakers hits my ears like blows…

The friend is mother of three children, the youngest is only three years old and has recently started kindergarten. The friend is correspondingly busy and sometimes overworked. She is happy to finally go to a café without children and talk.

I'm also looking forward to seeing her, as always - but the music hits my ears, and the impulse propagates itself, it feels almost like electric shocks all over my body…

Accordingly, I'm tense and twitching around, and at the first opportunity I ask a waitress to please turn down the volume.

And then I wait. Nothing happens. My flfriend starts to talk… in purely physically terms that what is called hearing takes place, but I cannot “hear” what she says (this is something that is common in autistic people, it is called auditory processing disorder (https://en.wikipedia.org/wiki/Auditory_processing_disorder), something that I now understand was a very large part of why I suffered tremendously as a child in school. With my therapist, it happens to me almost regularly that I have to ask her to repeat something... Think of it this way, dear reader: in some situations, my auditory perception and processing in the brain is about the same as it is for you when you watch from the ground an airplane break the sound barrier...). At the same time, every beat, every note, every rise and fall of a singer's voice, every instrument, every background instrument, every secondary and accompanying melody, every change in melody and rhythm, pelts me from the jukebox like the heaviest tropical rain, plus other people inside who are also talking with each other…

I can't give my friend the attention that I want to give her and that she deserves. I try to explain to her that the music is too loud for me, that it’s just not possible. Why don't they turn the music down already? She starts defending the employees, saying that she also once worked as a waitress, that you can't always jump right away. I understand that, and I try time and again to convey that I'm physically not able to stand the music, which is too loud for me, I want to go outside, there are several free tables.

But my friend refuses and says I should see this as an opportunity to practice equanimity under difficult circumstances.

The music gets too much for me with every breath. I can't do these two things at the same time, have the music hit me, and be with and talk to my friend, especially since our conversations are never just about superficial matters. I notice my nervous system and whole body developing a stress response that is a familiar one, practiced and practiced for decades: since "Flight" is not possible for me, is not made possible for me, "Fight" comes up... Anger.

I get up abruptly and go over to the counter, because that’s where I am locating the music (error, as it turns out a few minutes later), and say to the young woman, please, turn down the music. I notice my voice having a sharp tone. She just nods - but the source of the noise is in fact not with her, but at the other end of the room, as my friend tells me as I sit down with her again. I tell her again that I want to go outside, again she does not move.

Again I try to explain what is happening to me. I give a well-known painful form of touching as an example and ask how she would feel about it. She just shrugs her shoulders and says with an equanimous expression that she would understand this as an exercise of equanimity. And in the next moment she also brings up a comparison with her three-year-old daughter, who, as is usual at that age, often has petulant moments.

It is hard to describe how I felt at that moment. This dear and important person does not understand me. Does not want to understand me. Was it more anger? Was it more shocked despair? At some point there was anger and I had to turn away, I was about to get up and leave. It must have been around this time that the music actually did turn down a bit. And out of love for my dear friend, something happened at that moment... suddenly I found myself able to, or did it somehow happen automatically?… I turned, or a mechanism was turned on again that I couldn't identify until a few days later because it was SO familiar to me... all my life I had lived like this....

Survival mechanism.

Full shut down of everything, grit your teeth and get through it, somehow it will work out, somehow it has to work out - and somehow it does. In this state, nothing else is possible, any creativity dies before it could even come up, even a positive state of mind is not possible (anymore) and often not even meditation, yoga or even sports. Nothing works anymore.

Since she had to be home by noon because the middle child was coming home from school, we left at that time and I went home as well.

The whole afternoon I was completely exhausted, sometimes I cried, sometimes I was irritated because of the slightest little thing... didn't know what I wanted... everything was too much for me, especially myself. I was somehow completely beside myself. I fell into bed shortly after ten o'clock and slept through until eight in the morning. In the morning, emotional balance very slowly returned, and with it mental balance. The previous day was on my mind the whole time. I wasn't necessarily angry, I was confused: this friend is a person I had considered "safe" until that moment. I was hurt, and most of all, unsettled. What more can I do than explain what I need? And my friends, my close friends... if they can't or won't be my "safe" people... how must I define friendship then? With this person or these people, and in general?

I had an appointment with another friend again in the afternoon, so I left over half an hour earlier to check out the location. It was in a quiet side street, inside again good loud music, so I sat down outside right away. A few cars now and then pasing bys, a few people, that's not a problem.

All in all, it took a few days until I was completely emotionally and thus mentally balanced again, and then I also realized that this had hardly ever been the case "in my former life". That I had always been in "survival mode" - and had daily "rage outbursts", and/or "depression attacks"... Today I know that these were meltdowns and autistic burnouts. The two years or so since diagnosis, life has given me the opportunity to almost totally retreat and learn and experience a peaceful and safe tranquility that I had never known before. This has allowed me to find that very emotional balance that is the foundation for mental balance in general.

Why am I telling this episode in such detail? Once, to refer to the topic of egoism. My friend could not and would not understand nor comprehend at that moment what I wanted and needed. It is even quite possible that she perceived me as selfish because of her own exhaustion.

And I can vividly imagine that such exact constellations and scenarios occur time and again in the lives of autistic people. I know, in my case it is so: how often did my mother tell me, when I was a child and teenager, how selfish I was.

But taking care of one’s own needs is not selfish. In the example described here, I wanted to spend quality time with my friend, to listen to her and be there for her…

… without disrespecting and overburdening myself, and that's the second reason why I'm telling this little story in such detail. Dear reader: please listen to the autistic person in your life! Even and especially if he or she is someone who seems little impaired. It may just seem that way to you. Please talk to each other a lot, always stay in communication! The impairment is there, it's real, I've just noticed it once again very clearly since I recently started going out again from time to time: to small cultural events, such as concerts or literature readings and the like by and for (lesbian) women. It's relatively easy to talk with others that way. But it demands a lot of mental preparation from me, and then I am on the one hand continuously busy in my head to observe the interaction of the women and to try to decode and identify (it can sometimes take a day or more until I realize that someone had been massively flirting with me!)… and on the other hand I have "the mask on", so to speak, because of course I don't say a word about autism! And I also have to constantly check in with myself about how I'm feeling and how I'm doing... so that I don't wait to leave until “my battery is completely dead”, but a little bit before that, so that I don't have to spend days recharging, because that's something that I've only recently learned, and am still learning, or have to practice. I can't just clearly define how I am, how I feel. A person who was once very important to me solved this quite cleverly: she gave me a kind of "tick-box questions", i.e. she asked me: "Do you feel angry?" "No." "Do you feel sad?" "No." And so she and I were able to eliminate one thing after another until, in the end, I was able to say "Yes." I've been doing that to myself ever since, and when I'm out in public, just in my head, of course.

With that in mind, dear reader, please allow the autistic person in your life, whom you love, as a friend, partner, child, whatever, "that little extra"! With dog, cat, horse we can do it too. He or she will notice it, I can assure you, and thank you so much, with all his/her friendship, love, loyalty!

And my dear friend?... I think she understood afterwards that she had demanded a lot from me. Too much. The following day she sent me a message in which she was speaking a very beautiful meditation for me. And I take this episode very well as something to draw a lesson from: also (and maybe especially!) towards loved ones we sometimes have to say: "(Stop! Up to here and no further!) I'll go now and sit at the table outside, and I hope you'll come with me!" Above all, next time I will choose the location and also go there earlier to check out the situation and take my precautions.