On being difficult

Something I don't often talk about is my fear of shutting down in a stressful situation. I have never really tried to explain it to anyone, and it is not something I think about in words. I know the physical sensation of shutting down, but rarely think about what is really happening. I try very hard to avoid situations where it might occur, and the fear of shutting down causes considerable anxiety. It may of course be a spiral – the shutdown is caused by anxiety, and the fear causes more anxiety, which increases the possibility of shutdown. And the only tools I have is avoidance and preparation. Before going into an unknown place or talking to somebody, or doing something new, I have to prepare myself, think about things that might happen, things people might do or say, and try to develop scripts with which I can respond. This is not very effective, situations and people are mostly unpredictable. Avoidance is also not always possible, and I think my unwillingness and stubbornness can be exasperating to others. If only they could understand that I really have no desire to be 'difficult'. I take no pride in it, and I find it distressing to see the effect it has on others.

It is awful to be seen as 'difficult' when I am scared and my heart feels like it is skipping beats and my thoughts are whirling and worst of all – I lose the ability to explain, to 'use my words'. I am good with words and languages, I love words – but when shutdown happens, I have no words, only fear and physical feelings. Another very unfortunate aspect of shutdown is that I lash out at people who try to help. Maybe because they try by asking questions, expecting a response from me, and it puts more pressure on me to talk and act rationally when I have lost the ability to do so.

I will say it again – I really hate that people see me as a difficult person. Because that is not who I am. I don't like upsetting anybody, I don't like derailing plans, I like things to go smoothly and calmly, I am not a selfish person who want things to go my way. I do know it is not always easy to live with me and to cope with my 'moods'. But it seems unfair that I spend a lot of energy adapting to other people, suppressing my 'otherness' and my instinctive reactions – and when I do not cope at times, I am seen as difficult.

What does shutdown feel like? What happens? It is so hard to describe something that essentially shuts out language, that makes me lose my words. And the inability to describe it makes it hard to convince others that it does happen. Maybe I can try do describe situations where it has happened. Phone calls can trigger shutdown. I don't like talking on the phone and when the sound is bad or someone talks too fast or says things I don't understand, I get anxious and it has happened a few times that I simply had to put the phone down because I cannot speak or get any words out. Apart from the anxiety, it is also very embarrassing and causes me to be even more scared of making calls.

When I am already anxious, small unexpected things can stop me in my tracks. I have gone into unfamiliar shops with the intention of buying something, and then I either cannot figure out where to pay, or the person behind the till asks something I cannot understand, and then I have to leave the shop with empty hands because I stopped being able to think and talk. I have to flee. I know there are almost always people around one can ask for help, but when you cannot talk, how can you ask?

When I lose my words and cannot think clearly, it does not mean that I am unaware of others and unaware of appropriate ways to act. I try hard not to cry, I manage to suppress the agitated sounds I feel like making, I stop myself from hiding my face behind my hands. I have to do this, because acting like I instinctively want to will attract attention I feel unable to cope with. I dread being in any situation where there is not a way out, a bathroom to hide in, my own car to drive away in.

This post started out as an effort to explain shutdowns. It ends with me having the urge to tell the people who know me – I AM NOT A DIFFICULT PERSON. I am different, I have different needs, different fears, and I am aware of expectations and the needs of others and I try my best to do what is best for everybody. I try my best. But I have challenges that I face, and when protecting myself clash with the needs and wants of other people, I would like them to understand that I am not selfish. Or difficult. Or stubborn.  Just temporarily unable to think clearly and unable to explain why I feel overwhelmed.

The right to be different

There is a saying doing the rounds again and again on Facebook, with slight variations. Basically it says “Some people need a high five. In the face. With a chair.” And it is supposed to be very amusing. I detest that saying and always immediately hide it from my feed. My absolute aversion to any form of violence, coupled with my instant literal interpretation of language, always leaves me with the involuntary impression of blood, injury, violence against a person. And I cringe and have to steer my thoughts away to prevent feeling upset. The few times I have ventured to let my dislike be known, I have invariably been told that I take life too seriously, or need to develop a sense of humour.

And those two things I have heard countless times before. The accusation that I take things too seriously has silenced me so many times, stopped me from giving my opinion, excluded me from conversations. I have so often doubted myself – maybe I really do need to lighten up? But no, I don't! (And I have to say that the words “Relax!” “Chill!” “Lighten up!” invariably make my hackles rise. I find it patronising and rude.)

Yes, I do take many things in life very seriously. And feel passionate about most of those things. I also have an excellent sense of humour. Ask people close to me and they will tell you that I laugh a lot, that I LOVE laughing and have the talent of seeing the funny side of most situations. I am as passionate about laughter and humour as about the serious stuff.

My passion and seriousness are not wrong, just often different. I laugh about different things than most people, and I laugh longer than some people expect. I can laugh a thousand times about one little thing, and I believe that is a gift. And my passion is a gift. My literal interpretation can be a gift too. And I have the right to think like I do, react like I do, and to give my opinion without being told that I am wrong because my reaction is not mainstream.

I believe people should learn to welcome it when others disagree with them, or express a different opinion. And we should all also learn to become less defensive. I include myself here. I know I am very touchy, and have to work hard to not become so defensive so quickly. But I have the right to feel angry when others dismiss my opinions just because they are different. I know that I deserve respect, just like everybody else. Different, not wrong or less than.

Sorrow

Sorrow shone on me like a beautiful confirming light that burns deeply.

Making less eye contact

I am slowly shifting from trying to fit in to finding ways to be kinder to myself. Ways to help myself relax and feel more at ease in this world. And one thing I am experimenting with is making less random eye contact with people.

I don't know why I look at others' eyes so much. I did not do it at all as a child, but as I taught myself to look at others, I grew into the habit of making too much eye contact, even with strangers. Maybe on some level I was thinking that it was a way of acknowledging people, which is a good thing. But then - I seldom find this contact comfortable. And I suspect that my discomfort shows. With the result that I don't feel bad for not wanting to look any more. I am not doing them a favour, and definitely not myself. 

This past December I started not looking at people so much when I went out. In crowded places I kept my eyes at about hip height, and in less crowded places, I would deliberately look at the patterns on the floor, the clouds, the cars and their lovely number plates, leaves lying in the street. It is a hard habit to break, looking at people so much. But not looking at them is being kind to myself. The less I look, the more I can focus on what I am doing, where I am going, what I am observing and thinking. And suddenly I enjoy shopping a bit more and find going out less taxing. 

Some may see this as a step backwards. I don't. It took me so long to discover that I will never please others by trying so hard to not be myself. And it does not make me happy. I do realise that it may lessen the opportunity for meaningful contact, but the constant discomfort is taking too big a toll. I need to discover more ways to make my life more enjoyable. I am trying to let go of the word 'should'. I am learning that taking care of myself is not the same as being selfish. 

Tired and discouraged

I have too many thoughts and too few words. Some words: tired, sad, discouraged. I can't blame anybody for not understanding. But I am tired of having to explain. Words cannot adequately explain and enlighten. Words are lifeless and theoretical. Why can't I send feelings and sensations to others and let them understand that way?

Therapy

I am very fortunate, I found a therapist I trust, someone who understands about Aspergers, who makes me feel understood as well as respected. And safe. Safe - a small word, a very big concept. If only I did not feel so vulnerable and scared after each appointment. It is like being out in the cold and getting used to it. Then someone puts a warm blanket around you for an hour, and takes it away again. The cold then feels more intense and harder to bear.

I greeted my therapist, won't go there for 6-8 weeks due to the summer holidays. My head tells me it is fine, I will be fine. My heart feels like a safety net was taken away. It feels like my grasp is slipping, how will I hold on to the hope he has given me? I have been strong and coping for so long, why does the strength seep away now that my struggles have been validated and acknowledged?

Imagination, and lining things up

I loved marbles when I was a child.  I still do. My mom made us nice cloth bags with a drawstring at the top for our marbles, I still have two of those with my marbles in them. I always played alone with them, and never the usual games other kids played. What I did most of the time was line them up. In perfect rows, forming a perfect square. I knew exactly which places on the carpet in my room were flat enough to not let them roll out of line. I spent hours doing this, making sure the lines were perfect, swopping some marbles and swopping them back, and just sitting there looking at the marbles, picking one up and looking at it, putting it back in the right place.

I am sure an observer would describe that play as unimaginative, not varied or exploratory, and see the use of the marbles as not appropriate and non-functional. And if he/she were to ask me what I was doing, I would not have been able to tell them. Which would have confirmed their belief that the activity was purposeless or just ritualistic. And maybe there would be a little frustration or sadness to see the lack of enjoyment of toys?

How wrong that observer would have been! It would have been a lot sadder if I saw marbles merely as small round balls of glass to be played with in ways that other people have determined. Where is the imagination in that?

I can try to describe what was going on in my mind, but even now as an adult that is almost impossible. Which leads me to believe that what is seen as a lack of imagination could very likely be communication difficulty.

The marbles had what I will call, for lack of a better word, personalities. Each marble was a unique being, not really like a person, but just as complex and interesting. And I did not randomly give them these personalities, it was just something I perceived and knew the moment I saw a marble for the first time.
Almost as if the marbles told me what/who they were. And it wasn't something I could describe in words, I still cannot. But I can to this day pick a marble up, and feel who that marble is. I find it frustrating not being able to describe this in words. Because it is a rich, very interesting, very complex 'world' I enter when I look at marbles. In a way the lack of words does not lessen the experience, rather it stops the experience being limited and neatly boxed in by words. It is so much more than descriptions, it is feeling and sensation, and emotion - it can be breathtaking.

I lined them up because some of them belonged together, and some not at all. It would be very unsettling to put the small blue one next to the white one, the white one is too threatening, it has a confusing personality. It looks fine, but it cannot be trusted. The white one and the big yellow one has to go to the back, to be with the anonymous and slightly scary multicoloured ones. And between the vulnerable and special ones in front and those in the back, there has to a barrier of more neutral but less interesting ones. And when all are in their right places, I can pick up the special green one, and go into its world. What you will see is a child looking expressionlessly at a marble. While inside there is a story playing out. Not one with a beginning, middle and end and with specific things happening, but a story filled with realisations, deep emotions and intense sensations. What a pity these stories cannot be shared!

I did not like playing pretend games with other girls. I had such a rich imagination and intense sensations, that playing dress-up or tea parties or school made little sense to me. To me it felt like imitating others, following others' ideas, and conforming to their ideas of what should happen. While being unable to describe my own wants and ideas. I dare say it felt unimaginative and boring to me. I do realise that children learn through play and that important social lessons are learned when playing in these usual and appropriate ways. I missed out on that and I guess it contributes to my struggles in the social world. But I have no regrets. My world was rich, filled with overwhelming imagination and sensations, joy and sadness, colours and sounds, all hidden to observers. So my plea would be - when you look at an autistic child, please do not assume that there is nothing going on inside just because you cannot see anything and because they cannot share what they are experiencing.

Your world and mine

I have been visiting your world for all my life. And I did what you required of me. You have come to believe I am one of you. You believe I live in your world. You believe I am like you. But I am still a visitor. I go back to my world often, and cannot invite you to come with me. My world is invisible to you. And that is a pity, since you will never see the spiraling joy, the dark and silent deep, the wonder, the fascinating parts of the whole. And you will never see that in my world I am beautiful.