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.

More on overload

Just thought to write about it while it is happening. As I sit here, almost every sound I hear feels wrong. The washing machine, the dog licking something, a bird making a repetitive sound outside - all too irritating. And the last thing I need to hear now is voices. I cannot listen to anybody right now, even the radio would be too much. A little while ago I had to listen to someone at school telling me something, and it took so much self-control to stand still and smile and respond while my stomach was hurting and my skin was crawling and I could feel every part of my clothes against my skin. It is hard to explain - it is not the person that I find irritating, nor the things he/she are saying, the problem lies with me and my senses and the inability to tolerate all the incoming stimuli. The muscles in my upper body feels funny, uncomfortable. You know that feeling you get when someone drags nails down a blackboard? I feel like that - not that intense, but constantly on days like this. Sounds, voices, textures make me cringe. And all you can see from the outside, is an irritated, unreasonable, angry woman.

"It's all about us."

Wow. I stumbled onto a blog written by a woman with a husband whom she believes has Aspergers. She also has female friends she believes has Aspergers. I am not going to link to that blog, and I am not going to reply to her posts.

But I find it upsetting to hear how someone goes on and on and on about how we do not care about others' feelings at all and how it is all about us, and how 'normal' people should have no expectations of caring, common sense and empathy from us.

Just wow. I am not going to read anything more on that blog, not going back there again.

Overload

I recently had the worrying experience of coming very close to a meltdown in public. Worrying because it would have been very embarrassing for me and the other people present. I just prefer to keep such intense reactions to myself.

But even more worrying because I did not see or feel it coming. I went from feeling calm to getting extremely agitated within a few minutes. And I suspect it is the result of a lifetime of suppressing my reactions to intense sensory and social input. I have learned to hide this not only from others, but also from myself. Before my diagnosis, I just believed it was wrong to get irritated so easily. And that I should try harder to stay calm and not act like a child. I now know that there is nothing wrong with getting overwhelmed, but lifelong habits and ways of thinking are hard to overcome. I have become so good at pretending that I feel OK that I actually believe it myself.

What I need to learn is how to identify the earlier stages of overload, to recognise the building stress. In hindsight, I can see the things that led to me being overwhelmed, but in the situation all the dots did not connect. I need to know when just taking a break will be sufficient and when leaving a situation is the best thing to do. I need to look more carefully at what is happening, how it is affecting me, and then learn to predict how much more I can handle.

And even more important, I have to be kinder to myself despite the fact that others may not understand or become impatient or feel inconvenienced. I spend a huge amount of energy accommodating and pleasing other people, probably too much energy. And they do not know this, how can they when doing the same things do not require nearly the same amount of energy of them? That is probably why they cannot understand my frequent irritation or fatigue. I work hard, I get tired, and I owe it to myself and to the people around me to insist on getting more down-time. 

It is scary though. I find it hard to read people, to pinpoint what they are really feeling, but I am good at picking up negative or positive vibes - feeling them, but not understanding them. So when I state that I do not want to do something, or want to be alone, or do not enjoy something I often feel the negative reactions and not knowing what it means makes me very anxious. Is the other person feeling irritation? Disappointment? Anger? Resentment? Rejection? Concern? I have no idea, and since people mostly respond with the universal and frustrating "It's OK", I am left feeling confused and guilty and insecure. 

And instead of using my down-time to relax, I worry. Maybe I need to be more honest and try to describe what I feel and experience and what my needs are. That is hard though - the sensations and feelings I have are so many times not connected to words at all. Take the imminent meltdown - if you wanted to know how I felt, I would have to show you the physical reactions I had to suppress, I cannot describe in words how I felt.

What I want to do is accept that my needs are important, and that even though it may inconvenience others, getting what I need will benefit them also. This is a continuing education - teaching both myself and the people around me.

What if trees knew?

 What if trees knew that which we don't?
What if trees see more than we do?
What if trees see the generations come and go
And gets bowed down by the sadness they absorb?

Would we cut them down in anger
Try to wipe out their knowledge
Ignore their wisdom?

Would we fear the seeds they spread
The roots that remain and feed the earth
We try so hard to destroy?