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!

Laughing in shops

If you go into a shop near where I live and hear someone laughing loudly, it is probably me. Most probably, since I seldom hear other people laugh while they are buying groceries. A family member recently made the light-hearted (I hope) comment that he is embarrassed being with me in a shop since I laugh a lot and loudly, and this made me think. I don't particularly like shopping, and shopping in new or confusing stores makes me very nervous. But when I feel at ease, I laugh. When my kids are with me, we laugh together, my eldest and I enjoy the same type of humour, and my youngest makes me laugh with her antics. And my husband really can make me laugh, I love it. It is ironic that we are all introverts, and not exactly a bubbly, spontaneous and cheerful bunch. There are days when we are out where we could be described as a walking sulk in four parts. But we are not afraid to laugh, and we love it.

Laughter is one thing I am not self-conscious about, and I don't understand why it can make some people uncomfortable in public. I love the joy, the feeling of something squeezing my stomach, the ticklish feeling in my chest. And I really don't care what strangers think when I stop in the middle of an aisle in a shop, say out loud "a medium sized wickerwork cat box" and bend over laughing and laughing and laughing. Or when my son comes up with a new and hilarious word, and I hug myself and stamp my feet while I laugh because the absolute fun and wonder makes it impossible to stay still. Or when I read a funny book in a coffee shop and have to squeeze my eyes shut and hold my breath to stop the joy from exploding and knocking over the table.

Laughter and fun and joy are gifts. Experiencing them in such an intense physical way is also a gift. So I will keep on laughing in shops as much as I can!

The power of imagination

When I was in primary school, every year the Grade 7's had a week long educational trip to Cape Town. It was compulsory, I had to go. Thirty years later I don't cringe any more when I remember that week, but I still shake my head a little bit.

I can use three words to describe that week - fear, confusion and hunger. The fear wasn't something new, my years in primary school were spent in a haze of constant nausea - that was what fear felt like. The confusion started with the 800km trip down to the Cape. All the kids looked like they were excited and knew exactly what was expected of them, and they happily crowded into the bus. I was last to get in, and of course all the seats were taken by then. The bus had those benchlike seats where two kids could sit comfortably, three kids were a bit crowded, but fine for short distances. A teacher saw me standing and ordered two girls to make a space for me next to them. Of course they resented that, I hated it and spent the next 799km sitting uncomfortably close to the edge of the seat, aware of the sighs and eye rolls. Not a good journey.

The hunger. I still had lots of issues with food at that age, and a week away from home was a challenge. I remember one evening just eating a few bites of rice because the chicken dish had raisins in it and the sight and smell of the swollen raisins made me want to gag. By the next morning I was very hungry, and when I got to the breakfast table and saw the bowl of soggy cereal in hot milk I cried with disappointment and again ate nothing. And then there were the peanut butter sandwiches. And the cooked vegetables. So little I could eat, I remained hungry the entire time.

It was an awful week. There were two things that kept me going. The first was a specially allowed visit  by a favourite aunt who lived in Cape Town. That meant so so much - a familiar face, a hug, someone smiling at me!

The other thing was my imagination. On top of the mountain next to the suburb we stayed in were two beacons, a white one, and a red one. Every morning after breakfast and every afternoon when we returned from the day's outing I would go outside and around the corner and stand staring at those beacons. I had decided that it was my dad, standing on top of the mountain, waving white and red flags, signalling to me. Telling me that I am not alone, everything will be fine. I stared and stared at the 'flags' until I had to go back inside. And that kept me going. It made me feel calmer, and loved, and not so very alone. It was powerful.

Looking back, I find it interesting because from my perspective I did not have a very close relationship with my dad at that age. I think deep down I knew that he loved me and would support me and would save me. Even though he was 800km away at that time, in some strange way I believe he really was on top of that mountain.

Aspergers and exhaustion

It is rather fitting that I don't have the energy to write a whole original blog post about exhaustion. I found this on the Asperger's Association of New England's web page. Quoting the following paragraphs because it makes so much sense. I may write some more about this, and about the huge role a supportive and knowledgeable therapist is playing in my life, helping me to understand this exhaustion.

How is it that some adults can present so well? Adults with Asperger Syndrome grew up before the diagnosis existed in the United States; it appeared in the DSM-IV in 1994. The diagnosis may not have existed but the adults did—and they needed to find ways to survive. The adults that I have met are survivors. (See Mark Goodman article I Am A Survivor). Without the neurology that supported an intuitive understanding of social behavior, many adults with AS learned to spend their time observing their environment and the people around them. They tried to make sense of the confounding behavior of their peers and tried to understand why people were always telling them, “You’re so smart, why can’t you just…(fill in the blank): go to a family function and behave (sensory, social and anxiety), complete this work assignment (executive function, processing speed), just do what’s asked of you (illogical, theory of mind), tell a therapist how you’re feeling (reliance on thinking more than feeling). Through observation and trial and error (after error), many managed to survive into adulthood. Some adults with AS develop an understanding of the world around them, a framework of how and where they fit or don’t, learn and apply skills and strategies to use in particular situations, anticipate and manage disturbing sensory input. Imagine how absolutely exhausting it is to do all of those things relying on cognition, not intuition. Nevertheless, after years of applying these skills and strategies, an adult with AS can look pretty good, maybe even “passing”—or almost passing—for NT (neurotypical).

So after years of practice and trying to fit or find a comfortable place in the world, some adults with AS have put together a life and many live with the worry that it could all come apart because of how precariously it is crafted. Working so hard to fit in, to understand or hide your neurology comes with a very high price tag. In addition to the exhaustion, mentioned before, there is often a huge overlay of depression and anxiety on top of the basic neurological condition of AS. It is depressing when there is no obvious place in the world where one belongs; when everyone else seems to know the rules by heart and you’ve never been given the manual. The repeated trial and failures to make friends, work, live independently, manage your own affairs and even succeed in therapy are constant reminders of being “less than;” it should be no surprise that these experiences so often lead to depression. Why not be anxious when “the world outside [your] door is scary”. It is unknown, unpredictable, full of people walking down the same sidewalk that you are, crowded MBTA trains, store clerks who may want to talk to you, sensory assaults and a myriad of things that are not within your control. With a lack of intuitive ability to generalize, every time you go out the front door is a new challenge. More or less neurotypical people do not have to think just to function somewhat comfortably in the world. Many adults with AS operate from a baseline of anxiety. Faced with the additional anxieties that come from living in an unpredictable world, an adult with AS who can look pretty good in one setting can fall apart in another.

http://www.aane.org/about_asperger_syndrome/living_asperger_syndrome_adults.html

You must be really high functioning

"You must be really high functioning!" and "I would never have guessed!" These are very common responses to me disclosing that I am on the autism spectrum. Because I am married, have children, run a  household, drive a car, buy groceries, read books, am intelligent and verbal - the autism must be a very small part of me, almost negligible. I realise that people sometimes see the above remarks as compliments. And I look 'normal' to them.

But I really do wish people would stop thinking in terms of high and low functioning. The more 'high functioning' people think you are, the less help you can expect, and the higher the possibility that your specific struggles will be seen as character deficits instead of part of your autism.

I must be highly functioning because I am fully verbal. Then why can I not share a fraction of the thoughts I have? I am constantly thinking, analysing, developing theories, studying, learning in my head. And when you ask me what I am thinking, I will most of the time lose my words. I have to put in a lot of effort sometimes to share my thoughts, and the words that I manage are so inadequate that it does not feel worth all the effort. Writing is easier than speaking, but even then it can take days to put the words on paper, and still they don't reflect the complexity and beauty of the thoughts I live with.

I must be high functioning because I can go into shops and buy what I and my family need. Then why do I only feel comfortable going into shops I know well? Why do I often cry and feel lost in shops where the layout is confusing and the procedures hard to understand? Why do the music and the voices of some people in the shops make me leave without buying anything? Why do I fear to the point of feeling sick going into shops where I have no idea what to expect?

I must be high functioning because I can run a household. Then why is my house always in a state of near chaos? Why are there bills not being paid on time? Why does it frustrate me that my family are not willing to eat the same dish for three weeks in a row? Why are there so many things I know I should do, but find so hard? Why is it so hard to start things, so hard to finish them, so hard to be patient when I am interrupted when I have managed to start something?

I must be high functioning because I can make small talk and have conversations. So why does social contact tire me out so much? Why do I still have to concentrate on tone of voice, body language, appropriate responses? Why do I try so hard to be accommodating, respectful and mindful of others, and still manage to offend, come over as disrespectful and difficult?

And why are people unaware of my struggles and frustration and exhaustion? It used to be that I cared about what others thought of me - I had to care to protect myself against ridicule and isolation and dislike. I have stopped caring so much. I accept and like myself now and the opinions of others cannot shake my belief in myself so violently any more. These days I keep my otherness hidden because I do not have the energy and motivation to explain. Because I don't trust the ability of others to understand. And because I don't want to place a burden on my family. I will keep on counting my many blessings and try to find ways to manage my frustration and tiredness.

So before people make remarks about functioning levels, it would be a good idea to stop for a moment and realise that they don't really know what goes on in others' lives, how they function and what their challenges are.

Wrong reactions, valid reactions

OK, so I find it hard to read people. I find it hard to discern their intentions. I find it hard to identify the emotions they successfully hide and even deny.

I often feel hurt or confused after interactions with people. And because 'not knowing' does not sit well with me, I analyse. I think about what happened or did not happen, I try to fill in the blank spaces, I try to think of possible intentions, emotions and other signs I missed. And because I am aware of my lesser ability to read between the lines, it is important to me to give others the benefit of the doubt. This is mostly a private process, I am not inclined to rush out to find someone to go through the process with me.

But sometimes I have shared. And the reactions almost always started with a BUT. Suggestions that I am holding the wrong end of the stick. That I don't quite understand. That I have misread intentions. That people actually meant well. That I have to change my perceptions. That I should not feel hurt. That my reactions are wrong. My expectations too high. My emotions too strong. And sometimes this is followed by little 'lessons' about why people do things, say things, act in ways that I don't understand.

But I don't need this feedback any more. No, I can do it all by myself. Tell myself that I am overreacting, not understanding, wrong, immature. And I am tired of it. I need to feel good about myself, I need to trust my own views and opinions. I need to see my reactions and emotions as valid. I believe I have gained insights that are valuable and true. My reactions to the world and other people may sometimes be different and hard to explain, but that does not make them any less valid and real.

So where does this leave me? I don't know. Alone in my own head? Feels like that most of the time. But I do know that that is not healthy for me. I do need meaningful social contact and discussion. Which can be tricky, because …. go back to the first sentence!