Saturday, October 6, 2012

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!

Thursday, October 4, 2012

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.

Friday, September 28, 2012

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.

Wednesday, September 26, 2012

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.

Sunday, September 2, 2012

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!

Thursday, August 30, 2012

Sharing something

I read this this morning on the Autism Discussion Page on Facebook and would like to share it here. The last part - 'God, I would love to play' - is such an accurate description of the social struggles of autistic kids. I found myself nodding and eventually crying as I read it. And I have to say that the whole social experience hasn't changed much for me, even though I am a lot older. I am still puzzled, still often don't understand.

Sunday, May 13, 2012

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.

Sunday, May 6, 2012

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.

Wednesday, March 14, 2012


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

Friday, January 27, 2012

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.