When Aspergers matters

A couple of years have passed since my diagnosis. During the first years having Aspergers was something I thought about every day. It was always in the back of my mind, I looked at everything through the Aspie lens. It was a good and helpful process. I figured out so many things, and made peace with most of them.

I think I have grown into my Aspie skin now. I don't think about it so often, some days not at all. It does not take up much thought space any more. I had a sudden thougth the other day though – that having Aspergers does not matter, except when it matters. Doesn't sound logical, and I did not share with anyone, but since then something happened that I can use as an example.

About two weeks ago, something really sad and upsetting happened. The only way I can cope with it now is not thinking or talking about it, but doing that takes a lot of energy. Then last week we invited guests for dinner and to stay over. I had to buy and prepare food for 10 people and clean the house. I enjoyed the cooking and loved having the guests over, that wasn't an issue. Then the day before they arrived, my son developed a tooth ache, and our regular dentist was on leave. I had to make phone calls and get an appointment at a new place. Took him there, had to answer questions and fill in a form (always exhausting) and eased him through the appointment. Two days later I had an appointment with my therapist. Discussed some emotional stuff with him, and while I was in the city, had quite a few errands to run. Did it all successfully. Came home, and found that the new gardener has created havoc and dug out ALL of my spring flowers for some reason – I found that hugely upsetting.

None of these things were that tiring by themselves, and most of what I listed were positive experiences. But by yesterday my energy was depleted. I felt literally sick, my brain felt fuzzy and I experienced complete sensory overload. Dogs barking, the ducks quacking, the kids talking, the clothes against my skin, the hair against my face – everything was just amplified and too much. I sat under a blanket on my bed a large part of the day, my eyes closed, and spend the rest of the time mindlessly playing computer games and listening to a favourite song over and over and over.

This is when having Aspergers matters. When doing 'normal' things use so much energy. When not being able to function for a day is not laziness, but real exhaustion.

I just wish I have the ability to recognise this exhaustion when it happens and allow myself to rest because it is what I need, instead of feeling restless and guilty and worthless because I am doing 'nothing'. I also hope that when I do talk about it, other people will understand that I still want to do the things that use so much energy. I love having friends over and cooking for them, I love being able to run errands for people or being able to help friends. I love driving to town. The exhaustion is just part of being an Aspie and an introvert, it is not something to avoid by limiting things that bring me joy.

Things I liked today

Dust in a sunbeam. The way the specks keep moving, appearing and disappearing. It was beautiful. And then someone walked through the sunbeam, and the dust swirled and curled and made beautiful patterns. And kept on doing so for an amazingly long time after the person left. And it was a wonderful thought that the air does this the whole time when we move, and we are totally unaware of it!

A praying mantis kept me company while I was washing the dishes. She wasn't scared of me, and I wasn't scared of her, we were simply there together. Maybe to her I was just a huge moving blob, but I loved the way her head moved to watch when I moved. I love that beautiful triangular head with the amazing eyes. She was good company.

My geese talked to me, and peered at me with their necks stretched and their eyes wary. I love talking to them.

I gathered dry sticks for all the wonderful winter fires I am looking forward to. I liked the way the very dry sticks snapped in my hands, releasing a puff of wood dust. I like the thought that what looks like dead matter will release the energy within to warm us on a cold night.

I ran my fingers through my son's soft hair and scratched his warm back as he was eating his porridge, and loved the way he smelled. I loved the hug he gave me when he got up and marvelled at the way his mouth curves when he smiles.

I heard the wind in the trees, signalling colder weather and possibly rain.

I laughed with my husband.

I found a beautiful piece of old blue porcelain in the garden.

I watched my daughter run and play and heard her sing, and felt content.

It was a good day.

Gnus-wombats-ducks celebrates 1000 Ausome Things #AutismPositivity2013

One of the things I love most about myself is my ability to keep joy somewhere inside to take out whenever I need it. I can laugh for ages about something funny, and then keep the joke or picture or funny word in the back of my mind, and at any later stage bring it to the fore again, and it makes me laugh all over again with the same amount of joy. I can look at something beautiful and shiver inside, and keep the shivers for later when I can close my eyes and experience the same joy the beauty brought me the first time. I can repeat a favourite line from a book or movie or poem a thousand, no, a million times without it losing its appeal. I can listen to a song on repeat for days without getting tired of it. I can reread a favourite book a hundred times and keep on enjoying it as much as the first time. I don't get bored and I don't crave novelty, I have such a wealth of experiences inside my head that I can dust off and enjoy again and again!

I love my imagination. I can close my eyes or get busy with my hands and my mind flies free and I create situations, dialogues, people, atmospheres. I can get lost in beautiful happenings and detail. I can get lost in imagined joy. Imagined sadness. I can see in my mind someone being kind to someone else, and experience the happiness and drift in that feeling without needing words. I can create needs and fulfil them and feel the gratitude. I can let go of words and talking and misunderstandings and just feel. I love this extra world in my head!

I like that I am not tugged in different directions by fashions and trends. I know what I like and what I don't like, and my preferences are not dictated by social pressures. I don't feel the need to be like other people and can thus look at new things as they are and make a judgement based only on my own reaction to it. I am not tempted to spend money on cool or popular things I do not want or need.

I like my need to question everything and to look at things from different angles. I want to understand, even though I  know my own understanding is also only a part of the whole. I love to analyse and rethink and question and ask why why why - just like a child.

I like who I am.

Therapy, and thoughts about thinking

We go in and the door closes behind us. I slowly exhale, close my eyes. I lie down on the carpet, on my side, my eyes still shut. My fists unclench and the tightness flows out of my shoulders. I take deep breaths, and tremble slightly with the relief of resting at last. The world recedes and I am willing and eager to start working. My red alert button is off, my green alert button is shining brightly.

This is what therapy is like. This is a very accurate description of what happens when I go into the psychologist's room. And yet - it happens only in my reality. His reality would show a client entering and sitting down on a leather chair, putting her book away and pushing down her hands between her calves, waiting for him to say something.

But that invisible lying down and exhaling is the best way of describing what the experience is like for me. It works better than words.

I often wonder what my thought process is like. Verbal, visual? I don't really know. I don't know if other people are more aware of the shape and form of their thoughts? I do know when something bothers me, I prefer having dialogues in my head, working on what I am thinking. But my feelings and emotions - I find it very hard to put it into words. Part of the difficulty may be that I find it difficult to recognise and label my feelings. Part of it is that I am not always aware of an emotion until it builds up and suddenly overwhelms me. If I concentrate, I have a vague feeling of irritation or being uncomfortable, but cannot get to the root of this before it pushes itself to the fore, often due to someone else noticing that something is wrong.

Then, sometimes, I know what is bothering me. It is easier when it is a sensory problem. The cold season is starting, and the feeling of long sleeves against the skin on my arms takes a lot of getting used to. Or the feeling of the socks and shoes against the toes on my right foot. The irritation builds up slowly, and by the end of the day I am out of sorts and have a very short fuse, and my whole body feels like it is minutely vibrating in a very horrible way.

When it is emotion, it is harder. I have the impression that I think about worries, hurts, frustrations etc in words, but when asked to explain, I find it almost impossible. Where are the words then? What I try to say and explain does not match what is going on in my head, and that is equally frustrating to me and the listener. I really hate being misunderstood, and it is made worse by my inability to express myself. Very recently I managed to share something, and my husband exclaimed 'why didn't you say this from the start?' and I sat there thinking 'I knew this from the start, but I only know it in words now'. Somehow the experience, the feelings, the thoughts and the words seem to fly around in my head randomly, and it is hard work, or chance, that connects them and let me express them intelligibly.

Very often, I find it easier to use a simile or metaphor or something like that for what I am feeling. As with the experience of therapy. And the description may not always make sense to others, but it makes sense to me. Some examples - when I see someone I really like, I don't know what emotion I experience, but I can describe it as 'something rising, lifting inside and changing the way I breathe'. Or when I see something really beautiful, it is 'pressure, compressing and expanding at the same time'. Seeing something special, like a small hidden flower, or a fish, is 'silence, stretching very far while condensing everything'. Pain is like red tulips opening and being twisted. Seeing someone being humiliated is like one hand pressing on my chest and the other one around my neck, strangling me. I am sure all these feelings are normal and have labels, I just cannot match the two.

Back to therapy. I am lucky to have a found a therapist who understands Aspergers, and to whom I can relate well. We are not working towards specific, determined goals, using specific methods, but the results are good. I am aware of valuable growth, but am mostly unable to describe it. I often think the most valuable aspect of the therapeutic hour is the switching off of the red alert button. The freedom of not thinking about tone of voice, body language, expressions, not worrying about offending or being inappropriate. Certainly a lot like lying down and relaxing for an hour!