I made this video for a friend who is a 7th grade teacher in the US. She asked me to record a personal testimonial for her class. I figured I might as well share it with a wider audience.
Musings is a pretty word. So here are the musings of an Aspergirl with a love of life, a passion for stories, and an ongoing faith journey.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Tuesday, 10 April 2018
Living with high-functioning autism: a vlog.
Vlog.
I made this video for a friend who is a 7th grade teacher in the US. She asked me to record a personal testimonial for her class. I figured I might as well share it with a wider audience.
I made this video for a friend who is a 7th grade teacher in the US. She asked me to record a personal testimonial for her class. I figured I might as well share it with a wider audience.
Friday, 11 August 2017
Battling depression: down in the dark and out the other side
As I wrote in my previous post, entering adulthood was a lonely experience for me. I felt depressed quite a lot, but a work-related burn-out and a break-up finally were the final straw and I spiralled deep into depression.
I was out of a job. My doctor advised me to exercise, so I went outside the house and walked for 3, 4 or 5 hours. However, I spent most of that time brooding about all my perceived failures, so it didn't help much. My sleeping patterns gradually got completely messed up - I would get up at 3pm and go to bed at 4am.
I had no energy at all. I felt empty - physically, mentally and emotionally. Even showering was too draining some days. Sometimes I would fall asleep on the sofa (I literally could not help it, I felt so drained and heavy-eyed) and sleep for hours, and I'd still feel tired when I'd wake up. I found no joy in the things I used to enjoy. For instance, I am an avid reader but back then, reading a book was too mentally exhausting. I also lost my appetite, even though I normally love food. But back then all I could manage to eat in a day was a small piece if toast and maybe an apple. My very skin felt heavy, dragging me down. I pictured my own death over and over - either contemplating suicide or wishing to die in an accident. It felt like only death could finally make the dull, constant pain in my soul stop (which I once explained in another post). What stopped me from doing it was knowing it would break the hearts of my loved ones.
As a treatment, I was put on antidepressants (Citalopram), which gave me the energy boost I needed to apply for a new job. I remember when I got back from the job interview, I collapsed on the sofa from sheer exhaustion and slept. Eventually, though, the antidepressants started to show their limits. They did not address the underlying issues that caused my depression. They also gave me a superficial feeling of happiness and of being invulnerable. I started to engage in risky behaviours. I drank too much. I slept around. But the fun I seemed to be having was only a shallow thing, an outer layer. Deep down, was still hurting, and empty, and drowning. I asked my doctor to reduce the doses until I was weaned off them.
I want anyone reading this to understand that I am not saying, "Antidepressants are bad". I am just sharing what it was like for me personally - not two people are the same.
I went to see several counsellors, some of whom helped and some who did not. I also attended a Cognitive Behaviour Therapy course and it gave me some tools that at least enabled me to fonction at work, but deep down I still felt the same.
Yet, eventually, gradually, I started to get better.
I was out of a job. My doctor advised me to exercise, so I went outside the house and walked for 3, 4 or 5 hours. However, I spent most of that time brooding about all my perceived failures, so it didn't help much. My sleeping patterns gradually got completely messed up - I would get up at 3pm and go to bed at 4am.
I had no energy at all. I felt empty - physically, mentally and emotionally. Even showering was too draining some days. Sometimes I would fall asleep on the sofa (I literally could not help it, I felt so drained and heavy-eyed) and sleep for hours, and I'd still feel tired when I'd wake up. I found no joy in the things I used to enjoy. For instance, I am an avid reader but back then, reading a book was too mentally exhausting. I also lost my appetite, even though I normally love food. But back then all I could manage to eat in a day was a small piece if toast and maybe an apple. My very skin felt heavy, dragging me down. I pictured my own death over and over - either contemplating suicide or wishing to die in an accident. It felt like only death could finally make the dull, constant pain in my soul stop (which I once explained in another post). What stopped me from doing it was knowing it would break the hearts of my loved ones.
As a treatment, I was put on antidepressants (Citalopram), which gave me the energy boost I needed to apply for a new job. I remember when I got back from the job interview, I collapsed on the sofa from sheer exhaustion and slept. Eventually, though, the antidepressants started to show their limits. They did not address the underlying issues that caused my depression. They also gave me a superficial feeling of happiness and of being invulnerable. I started to engage in risky behaviours. I drank too much. I slept around. But the fun I seemed to be having was only a shallow thing, an outer layer. Deep down, was still hurting, and empty, and drowning. I asked my doctor to reduce the doses until I was weaned off them.
I want anyone reading this to understand that I am not saying, "Antidepressants are bad". I am just sharing what it was like for me personally - not two people are the same.
I went to see several counsellors, some of whom helped and some who did not. I also attended a Cognitive Behaviour Therapy course and it gave me some tools that at least enabled me to fonction at work, but deep down I still felt the same.
Yet, eventually, gradually, I started to get better.
A
friend once asked me, "How did you overcome it?" I wish
I had a simple answer. I don't. Antidepressants helped me because they gave me
enough energy to find a job. Therapy helped me because it meant I could
talk through stuff and understand my own emotions better. A handful of
friends were present for me - they didn't have a magic formula to make me
better but they were there and that was important.
During that time, I received my Asperger's diagnosis, and finally understanding why I was different was a relief. Knowing myself better also allowed me to avoid overwhelming situations whenever possible.
At some point, I moved out of a big flat that was a drain on my budget and that lifted a big weight off my shoulders. I also joined a wonderful church where I finally felt loved for who I was and supported.
Not a single of these things explain how I got better, but all of them helped. I started finding joy in little things of life again. I distinctly remember sitting in my new house and realizing I felt happy for no particular reason, for the first time in years. It doesn't mean I was OK after that but it was a turning point, and things got better and better.
During that time, I received my Asperger's diagnosis, and finally understanding why I was different was a relief. Knowing myself better also allowed me to avoid overwhelming situations whenever possible.
At some point, I moved out of a big flat that was a drain on my budget and that lifted a big weight off my shoulders. I also joined a wonderful church where I finally felt loved for who I was and supported.
Not a single of these things explain how I got better, but all of them helped. I started finding joy in little things of life again. I distinctly remember sitting in my new house and realizing I felt happy for no particular reason, for the first time in years. It doesn't mean I was OK after that but it was a turning point, and things got better and better.
Today, I feel like I am the happy woman I always was inside, the
one that was waiting to come out. It doesn't mean I am entirely free from depression forever, but I can say with confidence that I am happy.
Battling depression: the loneliness of not fitting in
A while back, I started sharing my experience with depression. Today, talking with a friend reminded me I never got around to writing more about it.
Throughout the years, I felt at odd with other people, those I perceived as "normal". I felt there was something deeply wrong with me, and I couldn't quite put my finger on it.
I was as lonely as a student than I had been as a teenager. When people my age were out partying, I was at home reading or studying. I wasn't invited and it didn't occur to me to ask whether I could join them. Instead of socializing, I would walk alone for hours in the streets of Brussels, dreaming my life away. I felt painfully lonely, and developed numerous crushes on boys that I never knew how to approach. The only way I knew was to tell them how I felt, with the immediate result of them pulling away from me. So, I imagined love stories that would never be.
I was as lonely as a student than I had been as a teenager. When people my age were out partying, I was at home reading or studying. I wasn't invited and it didn't occur to me to ask whether I could join them. Instead of socializing, I would walk alone for hours in the streets of Brussels, dreaming my life away. I felt painfully lonely, and developed numerous crushes on boys that I never knew how to approach. The only way I knew was to tell them how I felt, with the immediate result of them pulling away from me. So, I imagined love stories that would never be.
Once I started working, the loneliness persisted. My Asperger's quirks meant that people viewed me suspiciously. At the best of times, they made fun of me; often they disliked me. I never socialized with my colleagues.
I never felt like I fit in in any job - I was like a square peg in a round hole. I felt inadequate no matter what I did and my self-esteem plummetted.
During that time, I met a man and started my first serious relationship (although that is a long story, for another time, possibly). As he was bipolar (with longer periods of being depressed than anything else), "caring" for him gave me some sense of purpose, but it was also mentally exhausting. I naively believed that I would love the depression out of him (not fully realizing I was suffering from depression myself). For the first time in my life, I experienced love and intimacy, but I never felt safe, because his depression caused him to react in unexpected ways and I felt he could leave me at any time.
I eventually took a postgraduate degree to become a primary school teacher. Teaching was a completely draining experience for me and eventually led me to a full-blown burnout. Soon after that, my boyfriend left me, and I sank into severe depression. The following years were arguably the most difficult in my life.
Saturday, 5 August 2017
Asperger's and empathy: feeling other people's sadness... or joy
Asperger's syndrome and autism are funny things. People often wrongly assume that we have no empathy, but this is a misunderstanding of our condition.
As I have stressed before, people with autism have social communication problems. This means we fail to read cues in people's facial expression, body language or tone of voice, that would indicate how they are feeling. Because of this, we can fail to respond appropriately to other people's emotions, or appear that we don't care. The reality isn't that we don't care, it's that we don't know.
It has been suggested that just as autistic people have difficulty dealing with sensory overload, they may struggle with emotions, too. Strong lights, sounds, touch, smells or tastes can be completely overwhelming for us. In the same way, we would feel other people's emotions too intensely.
I have autism, but I also have huge levels of empathy. I can struggle to read non-verbal language (although I am getting better at it), but if people verbalize their emotions, I feel deeply for them. When I realise someone is suffering, I feel an intense pang of sadness and anguish deep in my heart, together with the burning desire to make it better, to soothe and comfort the other person..
In my work, I am confronted to heartbreaking stories. And trust me, my heart breaks for them every time refugees tell me what happened to them.
But last night, empathy worked in another, unexpected way: I felt deep, glowing happiness on behalf of another person. One of my closest friends is going through a very happy experience - and I felt as though my heart and my very skin would burst with happiness.
It felt like dancing in a warm summer rain; like the way music sometimes fills me up inside and makes me want to run; like electric energy running through my body. And for the first time in a long while I started stimming, because I needed an outlet for the strong emotions I was going through. I started bouncing up and down, then flapping my hands very fast, all the while feeling my body was not enough to countain all the joy I was feeling for someone else.
As I have stressed before, people with autism have social communication problems. This means we fail to read cues in people's facial expression, body language or tone of voice, that would indicate how they are feeling. Because of this, we can fail to respond appropriately to other people's emotions, or appear that we don't care. The reality isn't that we don't care, it's that we don't know.
It has been suggested that just as autistic people have difficulty dealing with sensory overload, they may struggle with emotions, too. Strong lights, sounds, touch, smells or tastes can be completely overwhelming for us. In the same way, we would feel other people's emotions too intensely.
I have autism, but I also have huge levels of empathy. I can struggle to read non-verbal language (although I am getting better at it), but if people verbalize their emotions, I feel deeply for them. When I realise someone is suffering, I feel an intense pang of sadness and anguish deep in my heart, together with the burning desire to make it better, to soothe and comfort the other person..
In my work, I am confronted to heartbreaking stories. And trust me, my heart breaks for them every time refugees tell me what happened to them.
But last night, empathy worked in another, unexpected way: I felt deep, glowing happiness on behalf of another person. One of my closest friends is going through a very happy experience - and I felt as though my heart and my very skin would burst with happiness.
It felt like dancing in a warm summer rain; like the way music sometimes fills me up inside and makes me want to run; like electric energy running through my body. And for the first time in a long while I started stimming, because I needed an outlet for the strong emotions I was going through. I started bouncing up and down, then flapping my hands very fast, all the while feeling my body was not enough to countain all the joy I was feeling for someone else.
Wednesday, 24 February 2016
Battling depression, part one
Lately, I learnt that someone close to me is severely depressed. As their story unravelled, I felt both overwhelmed with empathy, because I have battled depression myself (as I mentioned in a previous post), and with powerlessness, because I'm not sure how I can help. A friend of mine and fellow depression sufferer once asked me, "How did you get over it?" I suppose she was hoping for some trick, some tips on how to beat it. I wish there was a magic spell to make people better, but I don't know any.
I do know one thing, though: it helps to know that you're not alone, that other people know what you're going through. This is why I am writing this today.
The first time I remember suffering from depression is as a teenager. I was a very lonely child, as I had huge difficulties relating to others because of my Asperger's syndrome. I was bullied because of my quirks, and I had no idea how to make things better for myself. I also had self-esteem issues. I cried a lot and felt misunderstood. It's around that time I started self-harming. At first, I would tear bits of skin from my fingertips with a needle. Then I started cutting with a pocket knife. Seeing the blood on my arm gave me an odd sense of relief, as if the mutilation matched the wounds that were tearing me inside.
One night, I tried to commit suicide by taking some pills. I was rushed to hospital. I remember my father telling me "We love you". I also remember telling my parents I was so screwed up I needed a psychiatrist. Unfortunately, the lady they took me to likely had no experience dealing with teens, and I stopped going after a while, claiming I was feeling better (which was false). At that time, I also promised my grandmother I would never try to kill myself again - a very important promise that may have saved my life.
When I was 18, a few things helped me feel better. Thanks to my parents' support, I traveled to London to study English for a year. That year was a turning point for me. First, because people had no expectations of my behaviour. At school, I had been the depressed girl who was always crying. In a vaguely conscious way, I felt trapped in that persona. In London, I could try and be someone different, someone happier. I made new friends, people who accepted me as I am. All of them were members of the church I went to, which links to the other important factor: I became a Christian.
My faith helped me in different ways. The Christian idea that God forgives our sins lifted the burden of guilt off my heart. I was keenly aware of ways I had hurt my loved ones through my behaviour, and felt I did not deserve happiness. Believing I could be forgiven and start afresh was a huge step. However, there are two sides to that coin: the Christian doctrine of sin can add new and heavier burdens to one's soul... but I am getting ahead of myself.
Faith also gave me a sense of worth, and a purpose. I have worth as a child of God - I am loved beyond all measure, and my purpose is to have a relationship with God. These basic beliefs still help me tremendously today.
I still had regular bouts of anxiety and distress, though. I often cried and often felt lonely and at odds with other people.
The battle was far from over.
I do know one thing, though: it helps to know that you're not alone, that other people know what you're going through. This is why I am writing this today.
The first time I remember suffering from depression is as a teenager. I was a very lonely child, as I had huge difficulties relating to others because of my Asperger's syndrome. I was bullied because of my quirks, and I had no idea how to make things better for myself. I also had self-esteem issues. I cried a lot and felt misunderstood. It's around that time I started self-harming. At first, I would tear bits of skin from my fingertips with a needle. Then I started cutting with a pocket knife. Seeing the blood on my arm gave me an odd sense of relief, as if the mutilation matched the wounds that were tearing me inside.
One night, I tried to commit suicide by taking some pills. I was rushed to hospital. I remember my father telling me "We love you". I also remember telling my parents I was so screwed up I needed a psychiatrist. Unfortunately, the lady they took me to likely had no experience dealing with teens, and I stopped going after a while, claiming I was feeling better (which was false). At that time, I also promised my grandmother I would never try to kill myself again - a very important promise that may have saved my life.
When I was 18, a few things helped me feel better. Thanks to my parents' support, I traveled to London to study English for a year. That year was a turning point for me. First, because people had no expectations of my behaviour. At school, I had been the depressed girl who was always crying. In a vaguely conscious way, I felt trapped in that persona. In London, I could try and be someone different, someone happier. I made new friends, people who accepted me as I am. All of them were members of the church I went to, which links to the other important factor: I became a Christian.
My faith helped me in different ways. The Christian idea that God forgives our sins lifted the burden of guilt off my heart. I was keenly aware of ways I had hurt my loved ones through my behaviour, and felt I did not deserve happiness. Believing I could be forgiven and start afresh was a huge step. However, there are two sides to that coin: the Christian doctrine of sin can add new and heavier burdens to one's soul... but I am getting ahead of myself.
Faith also gave me a sense of worth, and a purpose. I have worth as a child of God - I am loved beyond all measure, and my purpose is to have a relationship with God. These basic beliefs still help me tremendously today.
I still had regular bouts of anxiety and distress, though. I often cried and often felt lonely and at odds with other people.
The battle was far from over.
Wednesday, 23 September 2015
The language of my heart
When I was 18, I spent a year in London, studying and practising English. The experience shaped the person I am today in many significant ways. The most obvious one is that I became a Christian that year. My faith is the foundation of my worldview, of my values, and of the character I strive to develop. Yet, that is not the only door that was opened in my heart that year.
I fell in love with the English language and its culture. I made friends in London and learnt tidtits of British history, as well as odd British habits and foods - I have become a heavy tea drinker (with milk, please), and I love mince pies, beans on toast and mango chutney (OK, strictly speaking that's not English, but I learnt to love Indian food when I was there).
I started watching movies in English and reading books. Lots and lots of books. Over the years, I've discovered numerous authors and immersed myself in the worlds they created. I walked in the shoes of hundreds of characters, wept with them, laughed with them, trembled for them. As George R.R. Martin puts it in A Song of Ice and Fire, "A reader lives a thousand lives before he dies. The man who never reads lives only one." Of course, I already was avidly reading French books, too; but reading in English imprinted the structure and flow of the language into my mind.
Partly because I was discovering faith in English, and partly because I was completely immersed in the language and culture, it created a strong emotional bond in my mind. English wasn't just a language I had learnt academically. It became part of me. It became the language of my heart and mind, sometimes even more than my mother tongue.
Like a cuckoo, I had hatched in a nest that wasn't build by my biological breed - but I felt at home. I returned to Belgium vowing I'd go back to the UK, and I spent a long time feeling homesick. Eventually, several years later, I moved to Swindon and lived there for 6 years, weaving English more and more into my personality. I worked with special needs children and discovered autism. English also allowed me to communicate with people all over the world through the internet, further opening up my mind to different cultures, ways of life and of perceiving the world.
Because I went to London, I learnt a new language that became part of me. I became a Christian. I made beloved friends. I opened my heart and mind to different cultures and ways of thinking. I got to know I had autism.
That gap year yielded outcomes that reached far into my future. I would not be the person I am today if I hadn't decided to go.
Roman Road, Eastend of London, where I lived for a year
I fell in love with the English language and its culture. I made friends in London and learnt tidtits of British history, as well as odd British habits and foods - I have become a heavy tea drinker (with milk, please), and I love mince pies, beans on toast and mango chutney (OK, strictly speaking that's not English, but I learnt to love Indian food when I was there).
I started watching movies in English and reading books. Lots and lots of books. Over the years, I've discovered numerous authors and immersed myself in the worlds they created. I walked in the shoes of hundreds of characters, wept with them, laughed with them, trembled for them. As George R.R. Martin puts it in A Song of Ice and Fire, "A reader lives a thousand lives before he dies. The man who never reads lives only one." Of course, I already was avidly reading French books, too; but reading in English imprinted the structure and flow of the language into my mind.
Partly because I was discovering faith in English, and partly because I was completely immersed in the language and culture, it created a strong emotional bond in my mind. English wasn't just a language I had learnt academically. It became part of me. It became the language of my heart and mind, sometimes even more than my mother tongue.
Like a cuckoo, I had hatched in a nest that wasn't build by my biological breed - but I felt at home. I returned to Belgium vowing I'd go back to the UK, and I spent a long time feeling homesick. Eventually, several years later, I moved to Swindon and lived there for 6 years, weaving English more and more into my personality. I worked with special needs children and discovered autism. English also allowed me to communicate with people all over the world through the internet, further opening up my mind to different cultures, ways of life and of perceiving the world.
Because I went to London, I learnt a new language that became part of me. I became a Christian. I made beloved friends. I opened my heart and mind to different cultures and ways of thinking. I got to know I had autism.
That gap year yielded outcomes that reached far into my future. I would not be the person I am today if I hadn't decided to go.
Tuesday, 11 August 2015
Retro post: Dance...
From time to time, I find things I've written quite a while ago, possibly in another place. I thought I could re-post them here: retro-blogging!
Here is one I wrote in 2011.
The grown-ups, they rush past, all preoccupied with deadlines and bills and worrying and such like. But I am walking down the streets listening to music and I'm dancing in my head.
The music lives inside my head and from there is spreads through my veins; it runs in my limbs all the way to my fingertips. It possesses me and I could dance right here in the street, but I only just dance in my head.
Here is one I wrote in 2011.
The grown-ups, they rush past, all preoccupied with deadlines and bills and worrying and such like. But I am walking down the streets listening to music and I'm dancing in my head.
The music lives inside my head and from there is spreads through my veins; it runs in my limbs all the way to my fingertips. It possesses me and I could dance right here in the street, but I only just dance in my head.
Tuesday, 26 May 2015
Light at the end of the tunnel - a work update
I have been working in a local supermarket for 2 years and 7 months. A total of 31 long months in an environment that is draining at best, sometimes soul-destroying.
Only today, I was given a reminder of why I find it so difficult. I saw a woman walk up to me and thought she probably needed information, so I greeted her with a smile, "Good morning!"
She replied curtly, "Here, check the price of that item for me. It seems darn expensive to me."
How about hello, please, thank you?
We aspies are said to struggle with social conventions. Yet, I have been taught that basic manners are important, and I make sure I use them - only to see so-called "normal" people discard them and talk to me like I'm beneath them. In those 31 long months I have been patronised, talked to rudely and even insulted. All the while keeping my smile (even if I was boiling with anger inside sometimes). And I'm the anti-social one?
Fortunately, as you'll probably remember, some new work opportunities have presented themselves to me. This has given me the confidence to hand in my notice. The 6th of June will be my last day! I'm counting the days.
However, it will be a step into the unknown. I am still working on the translation I started back in February - 86 pages done out of 107, and still a lot of research to do to sort out the quotations. I recently had an email exchange with the publisher and gave him an update of my progress. He gave no sign of impatience (phew!).
The language school, however, have failed to get back in touch with me. Not only that, but I can't get through to them - I have called (no one answers) and sent emails and gotten no reply. This worries me a fair bit.
I know what you'll say - look for something else. But all my free time (pretty much) is taken up by translation.
We shall see. At least, as of the 6th of June, I will have a lot more time - to finish the translation and to search for another job.
On the 6th of June, I will be free.
Only today, I was given a reminder of why I find it so difficult. I saw a woman walk up to me and thought she probably needed information, so I greeted her with a smile, "Good morning!"
She replied curtly, "Here, check the price of that item for me. It seems darn expensive to me."
How about hello, please, thank you?
We aspies are said to struggle with social conventions. Yet, I have been taught that basic manners are important, and I make sure I use them - only to see so-called "normal" people discard them and talk to me like I'm beneath them. In those 31 long months I have been patronised, talked to rudely and even insulted. All the while keeping my smile (even if I was boiling with anger inside sometimes). And I'm the anti-social one?
Fortunately, as you'll probably remember, some new work opportunities have presented themselves to me. This has given me the confidence to hand in my notice. The 6th of June will be my last day! I'm counting the days.
However, it will be a step into the unknown. I am still working on the translation I started back in February - 86 pages done out of 107, and still a lot of research to do to sort out the quotations. I recently had an email exchange with the publisher and gave him an update of my progress. He gave no sign of impatience (phew!).
The language school, however, have failed to get back in touch with me. Not only that, but I can't get through to them - I have called (no one answers) and sent emails and gotten no reply. This worries me a fair bit.
I know what you'll say - look for something else. But all my free time (pretty much) is taken up by translation.
We shall see. At least, as of the 6th of June, I will have a lot more time - to finish the translation and to search for another job.
On the 6th of June, I will be free.
Sunday, 8 February 2015
Happy-flappy
You may have heard about stimming - short for self-stimulation. Stimming is any repetitive movements or sounds that people on the autistic spectrum use to regulate their emotions. We do this when we feel overwhelmed by stimuli, in order to calm ourselves down, but also as an outlet for excitement (which can be positive or negative excitement). Some of us flap our hands or wriggle our fingers, clap, rock our heads or bodies, spin objects, hum, sing, even jump. Most books about autism will tell you about those behaviours.
But what does stimming feel like for an autistic person?
When I'm nervous, I feel like ants running up and down my arms, and they make my fingers wriggle. I also bite my cheeks or lips. It's an outlet for the build-up of anxiety.
When I'm happy, the feelings are bubbling up inside my bones and veins and I need to let it out. I need to dance, clap, jump on the spot, run, or flap my hands.
I am able to contain such outbursts of emotion in public (most of the time anyway) because I know people look at you funny when you suddenly start clapping your hands or dancing. I have been known to start running in the street for no apparent reason. The hidden reason is that I'm happy or excited. I have confused many a bus driver who assumed I was running for the bus stop... when I was in fact running for joy.
When I'm home, however, there is no reason not to. So, I can listen to a favourite song, look at a funny meme, or watch an awesome episode of my favourite TV series... and I can clap or flap my hands or dance, to my heart's content. And I'm lucky enough that my partner doesn't mind (as long as I don't break anything!).
Welcome to my world. I am autistic and proud.
But what does stimming feel like for an autistic person?
When I'm nervous, I feel like ants running up and down my arms, and they make my fingers wriggle. I also bite my cheeks or lips. It's an outlet for the build-up of anxiety.
When I'm happy, the feelings are bubbling up inside my bones and veins and I need to let it out. I need to dance, clap, jump on the spot, run, or flap my hands.
I am able to contain such outbursts of emotion in public (most of the time anyway) because I know people look at you funny when you suddenly start clapping your hands or dancing. I have been known to start running in the street for no apparent reason. The hidden reason is that I'm happy or excited. I have confused many a bus driver who assumed I was running for the bus stop... when I was in fact running for joy.
When I'm home, however, there is no reason not to. So, I can listen to a favourite song, look at a funny meme, or watch an awesome episode of my favourite TV series... and I can clap or flap my hands or dance, to my heart's content. And I'm lucky enough that my partner doesn't mind (as long as I don't break anything!).
Welcome to my world. I am autistic and proud.
Monday, 15 December 2014
Meltdown
Today, I had a meltdown on may way home.
Nothing happened in particular.
I'm just so sick and tired of my job, of feeling cold all the time, of the constant noise, and of having to constantly wear my "kind and polite supermarket employee" mask when people irritate the hell out of me with their familiarity, their rudeness, their mean-spirited "humour".
I try so hard to look at the positive and to be grateful, knowing full well that there are far worst jobs, and that some people in the world are being exploited and enslaved, and that others struggle to find work. I try. I really do.
But on days like today I just hate it, hate it, hate it; and I guess it's healthier to aknowledge that, than pretend I'm OK.
So I cried and vented and ranted.
And tomorrow... is another day.
Nothing happened in particular.
I'm just so sick and tired of my job, of feeling cold all the time, of the constant noise, and of having to constantly wear my "kind and polite supermarket employee" mask when people irritate the hell out of me with their familiarity, their rudeness, their mean-spirited "humour".
I try so hard to look at the positive and to be grateful, knowing full well that there are far worst jobs, and that some people in the world are being exploited and enslaved, and that others struggle to find work. I try. I really do.
But on days like today I just hate it, hate it, hate it; and I guess it's healthier to aknowledge that, than pretend I'm OK.
So I cried and vented and ranted.
And tomorrow... is another day.
Tuesday, 2 December 2014
Taking off the rose-tinted glasses
I guess my latest post may have puzzled some of you.
Back in October, I wrote about finding the positive in my work. That is what I have been striving to do for almost two years, because I don't want to be ungrateful for what I do have, and because looking at the positive helps me feel better.
However, the more time goes by, the less I can deny this very simple truth:
I actually hate my job.
Obviously, there is the fact that it doesn't fit my training, experience and skills at all. I have two university degrees - one in languages and translation, and the other one in teaching. Over the years, I have worked in the administrative field at first, then in the education field, mainly as a teaching assistant and holiday carer for children with special needs. Now I work in a supermarket. I have no training in sales or marketing, and no affinity for those kind of things.
In fact, the more I work in sales, the more appalled I am by the tactics used to make people buy things (I wrote a little bit about that in my post about advertising). For instance, we regularly have a "Buy one, get one free" offer on crates of cheap beer - and this, in a town where alcohol problems are rampant. I find that criminal, but, "That's just business". Not to mention the conditions in which many of the things we sell are made - think about slave-harvested shrimp or chocolate. So I am part of an industry that goes against everything I believe in.
There is also the work environment itself. I have an autistic spectrum disorder. I have sensory issues - I am extremely sensitive to noise, and my brains struggles to process more than one information at once. In my shop, there is the buzzing of fridges, neon lights, and air conditioning, the beeping of the tills, the constant background music - and I cannot shut it off. As a result, I struggle to concentrate on my work, and at the end of the day, I am mentally exhausted even though my job isn't intellectually challenging. Sensory overload, coupled with my low tolerance to stress, has brought about many a meltdown.
Another issue is having to interact with a lot of people. Don't get me wrong, I usually like people and enjoy helping them. However, having to deal with customers' requests while carrying out other tasks I need to focus on is difficult. And I really struggle with people's familiarity. Customers see me every day, and they seem to think I'm somehow close to them. Of course, this means the culturally expected greeting kiss, but it also means some customers feel it's OK to squeeze my shoulder or even, I kid you not, affectionately slap my bum (I politely asked the lady who did it every time she saw me to stop doing it. She took it well, but what made her think it was OK in the first place?).
The content of the job itself is the same week in, week out. It's not interesting, and most of the time I'm really cold, because I'm in the refrigerated foods department.
So all in all, and not matter how many fun little sides I may found to it, and no matter how much I want to be grateful to have a job in the first place, I hate it, and I struggle more and more.
I need a new job, but I don't even know where to start...
Back in October, I wrote about finding the positive in my work. That is what I have been striving to do for almost two years, because I don't want to be ungrateful for what I do have, and because looking at the positive helps me feel better.
However, the more time goes by, the less I can deny this very simple truth:
I actually hate my job.
Obviously, there is the fact that it doesn't fit my training, experience and skills at all. I have two university degrees - one in languages and translation, and the other one in teaching. Over the years, I have worked in the administrative field at first, then in the education field, mainly as a teaching assistant and holiday carer for children with special needs. Now I work in a supermarket. I have no training in sales or marketing, and no affinity for those kind of things.
In fact, the more I work in sales, the more appalled I am by the tactics used to make people buy things (I wrote a little bit about that in my post about advertising). For instance, we regularly have a "Buy one, get one free" offer on crates of cheap beer - and this, in a town where alcohol problems are rampant. I find that criminal, but, "That's just business". Not to mention the conditions in which many of the things we sell are made - think about slave-harvested shrimp or chocolate. So I am part of an industry that goes against everything I believe in.
There is also the work environment itself. I have an autistic spectrum disorder. I have sensory issues - I am extremely sensitive to noise, and my brains struggles to process more than one information at once. In my shop, there is the buzzing of fridges, neon lights, and air conditioning, the beeping of the tills, the constant background music - and I cannot shut it off. As a result, I struggle to concentrate on my work, and at the end of the day, I am mentally exhausted even though my job isn't intellectually challenging. Sensory overload, coupled with my low tolerance to stress, has brought about many a meltdown.
Another issue is having to interact with a lot of people. Don't get me wrong, I usually like people and enjoy helping them. However, having to deal with customers' requests while carrying out other tasks I need to focus on is difficult. And I really struggle with people's familiarity. Customers see me every day, and they seem to think I'm somehow close to them. Of course, this means the culturally expected greeting kiss, but it also means some customers feel it's OK to squeeze my shoulder or even, I kid you not, affectionately slap my bum (I politely asked the lady who did it every time she saw me to stop doing it. She took it well, but what made her think it was OK in the first place?).
The content of the job itself is the same week in, week out. It's not interesting, and most of the time I'm really cold, because I'm in the refrigerated foods department.
So all in all, and not matter how many fun little sides I may found to it, and no matter how much I want to be grateful to have a job in the first place, I hate it, and I struggle more and more.
I need a new job, but I don't even know where to start...
Monday, 1 December 2014
A giraffe on an ice field
Once upon a time, some poachers captured a young giraffe to sell him to a zoo. They bound him in thick ropes, so he couldn't escape without injuring himself; and put him on a boat headed to a country where they didn't have giraffes. Children would be delighted to gaze at him, no doubt.
The journey lasted for weeks and weeks, and the weather was getting colder and colder until the boat ran into a storm. In the chaos that ensued, the giraffe fell overboard just before the boat sank.
By some stroke of luck, however, he managed to swim to a very close shore.
It was very odd and unlike anything he had seen before. First of all, it had no colour - just an endless field of blinding white. Then, it was cold - as cold as the water he had been in moments before. He started to shiver as he took a few hesitant steps. Boy, was it slippery!
He had landed on an ice field.
Now our giraffe was a very clever creature. His height and long neck allowed him to reach the highest foliage to feed, and his tongue was grooved to easily strip leaves from branches.
Pity there were no trees to feed from, only ice.
His patches of brown and tan made great camouflage on the yellow, sun-beaten grasslands of Africa.
But the giraffe wasn't in a brown and tan grassland. He was on a dazzling white ice field, and he really stood out.
The giraffe had beautiful, long lashes around his eyes that were very useful to keep insects out.
Only, there were no insects on the ice field.
His wide hooves and nimble legs gave him good balance and the ability to run fast.
However, his hooves slipped on the ice and he couldn't run.
All of our giraffe's wonderful characteristics were completely useless, sometimes even a hindrance, because he wasn't in the right environment.
That giraffe, my friends, is me.
The journey lasted for weeks and weeks, and the weather was getting colder and colder until the boat ran into a storm. In the chaos that ensued, the giraffe fell overboard just before the boat sank.
By some stroke of luck, however, he managed to swim to a very close shore.
It was very odd and unlike anything he had seen before. First of all, it had no colour - just an endless field of blinding white. Then, it was cold - as cold as the water he had been in moments before. He started to shiver as he took a few hesitant steps. Boy, was it slippery!
He had landed on an ice field.
Now our giraffe was a very clever creature. His height and long neck allowed him to reach the highest foliage to feed, and his tongue was grooved to easily strip leaves from branches.
Pity there were no trees to feed from, only ice.
His patches of brown and tan made great camouflage on the yellow, sun-beaten grasslands of Africa.
But the giraffe wasn't in a brown and tan grassland. He was on a dazzling white ice field, and he really stood out.
The giraffe had beautiful, long lashes around his eyes that were very useful to keep insects out.
Only, there were no insects on the ice field.
His wide hooves and nimble legs gave him good balance and the ability to run fast.
However, his hooves slipped on the ice and he couldn't run.
All of our giraffe's wonderful characteristics were completely useless, sometimes even a hindrance, because he wasn't in the right environment.
That giraffe, my friends, is me.
Friday, 14 November 2014
What autism isn't (and what it is)
A lot has been done to inform and educate people about autism, but a
lot of stereotypes still need to be challenged. As a person with an
autistic spectrum condition – I have Asperger’s syndrome – I thought I’d
share with you a few things I am not:
1. I am not a “retard”. The word itself is offensive anyway, and you shouldn’t use it to describe anyone. In addition, autism has got nothing to do with IQ. Some people with autism are extremely intelligent; others have developmental delays and very low IQ – and everything in between those two extremes. Autism may impair a person’s ability to function independently, but it does not mean they’re stupid.
2. I am not sick. Autism is not a disease, it’s a neurological condition. That means you cannot “cure” it, much like you can’t “cure” Down syndrome. I can develop strategies to help me function better and reach my full potential. However, if I am successfully doing this, it doesn’t imply I am “cured”. It just means I have learnt to adjust and thrive.
3. I am not broken. I don’t need to be fixed or mended. My brain functions differently from yours and at times that makes it difficult for us to understand each other or get on, or for me to live independently. However, I am a whole person with a lot to offer. I can be given strategies to adjust to mainstream society. I would be happy if you too made an effort to try and understand my points of view and adjust to the way my brain works. If we both take steps towards each other, we’ll get along much better.
4. I am not an “idiot savant”. As I highlighted before, autism and IQ are not related. Yes, some people with autism are geniuses in one or several areas – it can be maths, music, drawing or anything else. However, not all of us are geniuses. Don’t assume I’m going to pull some incredible intellectual skill out of my sleeve just because I have autism – trust me, I experience enough difficulties as it is without having to deal with painfully unrealistic expectations.
5. I am not selfish or unsympathetic. I struggle to understand other people’s point of views. Body language, facial expressions, subtext, and implied or hinted meanings are very mysterious to me. This means I do not always understand or realise what emotions you are going through. However, if you make it plain and simple and tell me, you will find me very sympathetic and eager to help. I do care. I just don’t always have the tools to understand your emotions. Equally, because I lack the ability to imagine what you feel or think, I might not realise how my words or actions will impact you before it’s too late. I might upset you without meaning to. Yet, once I realise this, I will be mortified and very willing to make it right – possibly making things worse with my awkwardness. Please be patient with me.
6. I am not antisocial. Some people have told me, "How can you have Asperger's? You've got friends, you get along with people!" While it is true that some people with autistic spectrum disorders have little interest in people and friendship, don't assume this is true for all of us. Some of us desperately want to make friends, but really struggle to do so (see point 5). Some of us have acquired enough social skills to make friends and socialize, even though it is often taxing (I avoid socializing in large groups because it exhausts me to interact with so many people and have to deal with so much information processing - my brain cannot cope). And most of all, those of us who have good friends are probably blessed to have met understanding, open-minded people who looked beyond our social akwardness and love us just as we are.
7. We're all on spectrum, aren't we? ... I should think not.
I have become increasingly annoyed by people saying "We're all on the spectrum" (meaning the autistic spectrum) after describing one of their idiosyncracies.
To all you neurotypicals (i.e., whose brains functions in typical fashion, as opposed to autistic brains) out there:
- Being organised does not make you autistic. It just makes you, well... organised.
- Sorting out your socks by colour does not make you autistic. At best, it makes you slightly OCD.
- Getting annoyed by last-minute changes to a plan doesn't make you autistic. There is a difference between being annoyed by change, and experiencing significant anxiety and distress because of it.
- Being very focused on a particular task at a particular time does not make you autistic. Being unable to focus on anything else does.
- Preferring to be alone doesn't necessarily make you autistic. As I mentioned above, autistic people are not all antisocial.
If you don't experience significant difficulties in the areas of social communication, social interation and social imagination (and theory of mind), as well as sensory difficulties, you are not on the autistic spectrum; and by saying you are, you are belittling the difficulties those of us who really are experience on a daily basis.
1. I am not a “retard”. The word itself is offensive anyway, and you shouldn’t use it to describe anyone. In addition, autism has got nothing to do with IQ. Some people with autism are extremely intelligent; others have developmental delays and very low IQ – and everything in between those two extremes. Autism may impair a person’s ability to function independently, but it does not mean they’re stupid.
2. I am not sick. Autism is not a disease, it’s a neurological condition. That means you cannot “cure” it, much like you can’t “cure” Down syndrome. I can develop strategies to help me function better and reach my full potential. However, if I am successfully doing this, it doesn’t imply I am “cured”. It just means I have learnt to adjust and thrive.
3. I am not broken. I don’t need to be fixed or mended. My brain functions differently from yours and at times that makes it difficult for us to understand each other or get on, or for me to live independently. However, I am a whole person with a lot to offer. I can be given strategies to adjust to mainstream society. I would be happy if you too made an effort to try and understand my points of view and adjust to the way my brain works. If we both take steps towards each other, we’ll get along much better.
4. I am not an “idiot savant”. As I highlighted before, autism and IQ are not related. Yes, some people with autism are geniuses in one or several areas – it can be maths, music, drawing or anything else. However, not all of us are geniuses. Don’t assume I’m going to pull some incredible intellectual skill out of my sleeve just because I have autism – trust me, I experience enough difficulties as it is without having to deal with painfully unrealistic expectations.
5. I am not selfish or unsympathetic. I struggle to understand other people’s point of views. Body language, facial expressions, subtext, and implied or hinted meanings are very mysterious to me. This means I do not always understand or realise what emotions you are going through. However, if you make it plain and simple and tell me, you will find me very sympathetic and eager to help. I do care. I just don’t always have the tools to understand your emotions. Equally, because I lack the ability to imagine what you feel or think, I might not realise how my words or actions will impact you before it’s too late. I might upset you without meaning to. Yet, once I realise this, I will be mortified and very willing to make it right – possibly making things worse with my awkwardness. Please be patient with me.
6. I am not antisocial. Some people have told me, "How can you have Asperger's? You've got friends, you get along with people!" While it is true that some people with autistic spectrum disorders have little interest in people and friendship, don't assume this is true for all of us. Some of us desperately want to make friends, but really struggle to do so (see point 5). Some of us have acquired enough social skills to make friends and socialize, even though it is often taxing (I avoid socializing in large groups because it exhausts me to interact with so many people and have to deal with so much information processing - my brain cannot cope). And most of all, those of us who have good friends are probably blessed to have met understanding, open-minded people who looked beyond our social akwardness and love us just as we are.
7. We're all on spectrum, aren't we? ... I should think not.
I have become increasingly annoyed by people saying "We're all on the spectrum" (meaning the autistic spectrum) after describing one of their idiosyncracies.
To all you neurotypicals (i.e., whose brains functions in typical fashion, as opposed to autistic brains) out there:
- Being organised does not make you autistic. It just makes you, well... organised.
- Sorting out your socks by colour does not make you autistic. At best, it makes you slightly OCD.
- Getting annoyed by last-minute changes to a plan doesn't make you autistic. There is a difference between being annoyed by change, and experiencing significant anxiety and distress because of it.
- Being very focused on a particular task at a particular time does not make you autistic. Being unable to focus on anything else does.
- Preferring to be alone doesn't necessarily make you autistic. As I mentioned above, autistic people are not all antisocial.
If you don't experience significant difficulties in the areas of social communication, social interation and social imagination (and theory of mind), as well as sensory difficulties, you are not on the autistic spectrum; and by saying you are, you are belittling the difficulties those of us who really are experience on a daily basis.
Wednesday, 5 November 2014
Top anxiety triggers for people with autism
As you probably know if you've been reading my blog, I have Asperger's syndrome, which is an autistic spectrum disorder. Today, something happened at work that reminded me of how fragile I can be, and I decided to share what happened and how it affected me.
I had just begun my shift. It was early in the morning and I was putting fresh loaves of bread on the shelves. All of a sudden, a loud hooting sound resonated behind me.
It made me jump. It made my heart race and my head swim; my hands became clammy. It brought tears to my eyes and a sudden feeling of rage rose in my chest. I turned around and saw my colleague standing on the forklift truck, laughing. He realised straight away I was upset and shrugged, "Smile, it was just a joke!"
A joke isn't funny when it's at someone else's expense. As it happens, loud, sudden noises cause me a lot of anxiety, and it can affect how I feel for the rest of the day. Here are the top 3 anxiety triggers for people with autism - people like me.
1. Uncertainty - not knowing what is happening or what is going to happen, or not knowing what is expected of us. You may know that people with autism need routines. What you may not know is that this is not just a preference. When something unexpected happens, we feel completely at loss, and we panic.
Most daily rules and routines change because of circumstances, but people with autism really struggle with that. For instance, you may have forbidden your autistic child from going in the laundry room because you don't want them to touch the washing machine. But today, your child has been playing outside and their clothes are covered in mud, so you take them straight to the laundry room to undress. The child will not understand why they're being taken in a place that is forbidden. The resulting tantrum or lack of compliance is not a display of bad behaviour, but a display of deep anxiety. You need to either stick to the rule, or, if your child has enough understanding, explain how, under those circumstances and under your supervision, they may come into the previously forbidden room.
2. Social interactions. We may struggle to understand social cues (or even language) or to communicate appropriately. Or, if we have been trained to act in the socially appropriate way, it still doesn't come naturally, and the effort is exhausting. If we have to interact with people we don't know well, or not at all, we have the extra stress of not knowing how that person will act. Social norms that we find difficult may be imposed on us. For instance, in my area, most people like to greet each other with a peck on the cheek. Refusing to do so is considered as rude as refusing to shake hands (something that many autistic people don't like, either!). Yet, letting someone touch my face requires trust, so I feel really uncomfortable when colleagues or regular customers insist on greeting me in that manner. I daren't refuse because I don't want to be rude, but it makes me feel anxious and stressed.
3. Sensory issues. Most of us are highly sensitive to light, noise, or touch. Sudden, loud noises cause me physical discomfort or pain, and set me on edge for a long time. So do unexpected touches - people may touch my shoulder in what they mean to be a friendly manner, but if I do not expect it, I will jump. Always make sure an autistic person is fine with you touching them before you do so - and by the way, should not that apply to everyone? My body isn't public property. I am the only one who should decide when it's OK for someone else to touch it.
People with autism struggle with things that most people take for granted. Please, keep those things in mind.
I had just begun my shift. It was early in the morning and I was putting fresh loaves of bread on the shelves. All of a sudden, a loud hooting sound resonated behind me.
It made me jump. It made my heart race and my head swim; my hands became clammy. It brought tears to my eyes and a sudden feeling of rage rose in my chest. I turned around and saw my colleague standing on the forklift truck, laughing. He realised straight away I was upset and shrugged, "Smile, it was just a joke!"
A joke isn't funny when it's at someone else's expense. As it happens, loud, sudden noises cause me a lot of anxiety, and it can affect how I feel for the rest of the day. Here are the top 3 anxiety triggers for people with autism - people like me.
1. Uncertainty - not knowing what is happening or what is going to happen, or not knowing what is expected of us. You may know that people with autism need routines. What you may not know is that this is not just a preference. When something unexpected happens, we feel completely at loss, and we panic.
Most daily rules and routines change because of circumstances, but people with autism really struggle with that. For instance, you may have forbidden your autistic child from going in the laundry room because you don't want them to touch the washing machine. But today, your child has been playing outside and their clothes are covered in mud, so you take them straight to the laundry room to undress. The child will not understand why they're being taken in a place that is forbidden. The resulting tantrum or lack of compliance is not a display of bad behaviour, but a display of deep anxiety. You need to either stick to the rule, or, if your child has enough understanding, explain how, under those circumstances and under your supervision, they may come into the previously forbidden room.
2. Social interactions. We may struggle to understand social cues (or even language) or to communicate appropriately. Or, if we have been trained to act in the socially appropriate way, it still doesn't come naturally, and the effort is exhausting. If we have to interact with people we don't know well, or not at all, we have the extra stress of not knowing how that person will act. Social norms that we find difficult may be imposed on us. For instance, in my area, most people like to greet each other with a peck on the cheek. Refusing to do so is considered as rude as refusing to shake hands (something that many autistic people don't like, either!). Yet, letting someone touch my face requires trust, so I feel really uncomfortable when colleagues or regular customers insist on greeting me in that manner. I daren't refuse because I don't want to be rude, but it makes me feel anxious and stressed.
3. Sensory issues. Most of us are highly sensitive to light, noise, or touch. Sudden, loud noises cause me physical discomfort or pain, and set me on edge for a long time. So do unexpected touches - people may touch my shoulder in what they mean to be a friendly manner, but if I do not expect it, I will jump. Always make sure an autistic person is fine with you touching them before you do so - and by the way, should not that apply to everyone? My body isn't public property. I am the only one who should decide when it's OK for someone else to touch it.
People with autism struggle with things that most people take for granted. Please, keep those things in mind.
Wednesday, 15 October 2014
Finding the positive
As I said in my latest post, I try to look at the positive in my job. I even made a list!
1. I have been brought up to believe in the value of work. Working, even in a seemingly menial job, is worthwhile for many reasons. By supporting myself, I am ensuring my independence. In addition, I am making myself useful.
2. My boss may be a bit rough around the edges and a very bad communicator, but I believe he is a kind man. He has had to deal with difficult things in his life and did the best he could, and I have a lot of respect for him. He is also quite understanding of my condition, even though he doesn't really get it - apparently, you can be understanding even when you don't understand it all...
3. I get on well with my colleagues. We can have interesting conversations and a good laugh - one them has started reading a science magazine for kids after seeing me doing it, which I think is pretty awesome.
4. I can practice being kind and caring to people even here, as some of our customers, especially the elderly, suffer from loneliness and are happy to have someone to talk to, even for a few minutes. It's a good challenge to try and be kind to people you don't really like, or when you're feeling tired and cranky. And I really think that putting a smile on people's faces is infinitely worthwhile. I can be a positive force in this world, just by doing this.
5. The stress involved with being responsible for consumer goods is not at intense as the stress involved with being responsible for people. As a teaching assistant, a mistake on my part could mean a child would get hurt. In my current job, we may have to throw away some bread I left in the oven for too long from time to time, but no lives are at stake.
6. Talking of which, I love baking the bread. They may be industrial pre-baked loaves and baguettes, but the wholesome smell is wonderful as they come out of the oven all golden and crispy and gorgeous.
7. I have discovered how to use the Force.The big shutter door that separates the storeroom from the store itself opens itself automatically when you walk through it. They think it's because it has sensors... but I know the truth *gestures to the shutter door theatrically and watches it raise in time with her hand*
8. I can see the most dangerous creatures from up close (no, I'm not talking about customers, although...). The first time I had to empty the bin, I was told to bring it to the "Molok". Now, I don't know about you, but in my mind, the name Molok conjures up some kind of underground demon, made of the darkest darkness, with eyes like furnaces and a mouth whose appetite can never be satisfied. Never mind that the Molok is actually a giant, half-buried garbage disposal unit outside the store - in my vivid imagination, he's still some mythical monster. Whenever I bring bins to the Molok, I am really glad he only wants to eat garbage, not me.
9. All this physical exercice is getting me fit. Lifting heavy boxes and carrying them up stepladders, jumping on and off the platform in the storeroom (I can't be bothered to use the stairs), running around trying to get everything done. And even better, I get karate-kid-style training. Cleaning the glass doors of all the fridges in my department means almost two hours of "wax-on, wax-off" arm exercice. I'll be a black belt by Christmas.
10. I can up my resistance to extreme temperature by going from the freezer room (minus 18° Celsius°) to the oven (200° Celsius). With this, and the physical training, I'll be physically ready for the zombie apocalypse.
1. I have been brought up to believe in the value of work. Working, even in a seemingly menial job, is worthwhile for many reasons. By supporting myself, I am ensuring my independence. In addition, I am making myself useful.
2. My boss may be a bit rough around the edges and a very bad communicator, but I believe he is a kind man. He has had to deal with difficult things in his life and did the best he could, and I have a lot of respect for him. He is also quite understanding of my condition, even though he doesn't really get it - apparently, you can be understanding even when you don't understand it all...
3. I get on well with my colleagues. We can have interesting conversations and a good laugh - one them has started reading a science magazine for kids after seeing me doing it, which I think is pretty awesome.
4. I can practice being kind and caring to people even here, as some of our customers, especially the elderly, suffer from loneliness and are happy to have someone to talk to, even for a few minutes. It's a good challenge to try and be kind to people you don't really like, or when you're feeling tired and cranky. And I really think that putting a smile on people's faces is infinitely worthwhile. I can be a positive force in this world, just by doing this.
5. The stress involved with being responsible for consumer goods is not at intense as the stress involved with being responsible for people. As a teaching assistant, a mistake on my part could mean a child would get hurt. In my current job, we may have to throw away some bread I left in the oven for too long from time to time, but no lives are at stake.
6. Talking of which, I love baking the bread. They may be industrial pre-baked loaves and baguettes, but the wholesome smell is wonderful as they come out of the oven all golden and crispy and gorgeous.
7. I have discovered how to use the Force.The big shutter door that separates the storeroom from the store itself opens itself automatically when you walk through it. They think it's because it has sensors... but I know the truth *gestures to the shutter door theatrically and watches it raise in time with her hand*
8. I can see the most dangerous creatures from up close (no, I'm not talking about customers, although...). The first time I had to empty the bin, I was told to bring it to the "Molok". Now, I don't know about you, but in my mind, the name Molok conjures up some kind of underground demon, made of the darkest darkness, with eyes like furnaces and a mouth whose appetite can never be satisfied. Never mind that the Molok is actually a giant, half-buried garbage disposal unit outside the store - in my vivid imagination, he's still some mythical monster. Whenever I bring bins to the Molok, I am really glad he only wants to eat garbage, not me.
9. All this physical exercice is getting me fit. Lifting heavy boxes and carrying them up stepladders, jumping on and off the platform in the storeroom (I can't be bothered to use the stairs), running around trying to get everything done. And even better, I get karate-kid-style training. Cleaning the glass doors of all the fridges in my department means almost two hours of "wax-on, wax-off" arm exercice. I'll be a black belt by Christmas.
10. I can up my resistance to extreme temperature by going from the freezer room (minus 18° Celsius°) to the oven (200° Celsius). With this, and the physical training, I'll be physically ready for the zombie apocalypse.
Sunday, 12 October 2014
Aspie planet
A few years back, I wrote a piece about how I see the world - or rather, how I function and how I kept getting hurt because the world doesn't work that way. I thought I'd share it here.
On my planet, people say what they mean and mean what they say, they don't pretend to be someone they're not. When they promise you something, they stick to it, and when they say and do kind things, it's not because they want something from you. On my planet, people don't try and use you.
On my planet, when you're nice to people, they're nice back to you; they don't take advantage of your kindness and they don't walk all over you.
On my planet, it doesn't matter if you're black or white or blue, because everyone sees beauty in everyone else's difference. People accept one another as they are and rejoice at diversity.
On my planet, there are things that are actually more important than money and power. Serious meetings are cancelled when the sun is shining so everyone can go outside and enjoy it. Parents never prioritise their career over quality time with their kids, and business men sit down on the grass in their suit to share a chocolate ice cream with their daughters.
On my planet, it's OK to cry if you're sad, even in public; it's OK to dance, jump up and down, run, or laugh loudly if you're happy. It's OK to be happy-clappy or happy-flappy! It's OK to talk excitedly about the things that you're passionate about, as long as you also let others share their passion.
On my planet, when you notice something pretty or beautiful, like a flower, a shiny bug, a butterfly, an interestingly-shaped cloud or a rainbow, it's good manners to point it out to the people around you.
On my planet, when men smile at you a sweet smile and take you in their arms, it is because they love you very much; and when they make love to you, they give you their heart as well as their skin. When they look at you like you are the most amazing thing they've ever seen, it is because that's exactly how they feel... not just because they want to take advantage of your naivety.
Unfortunately, my ship crashed on earth.
Wednesday, 10 September 2014
Life is easier in stories.
I don't know about you, but as a person with Asperger's syndrome, I think life would be
much easier if I could work out people's intentions - if little subtitles could
appear and tell me what a person really wants or means. So many times I have misread what people meant, or been deceived because I took things at face value.
Maybe this is why I love stories so much.
When you read a book, a lot of the time characters' intentions are made explicit. You get insights into their thoughts and motives. Working out why they act the way they do is therefore easy, and you can understand them better and predict what is likely to happen. When you watch a film and a bad guy comes on, there is often some clue: the music, the way they look or their mannerisms.
Not so in real life. I have absolutely no idea what people truly mean, truly want. I can only go with what they tell me. I take them at face value.
When someone speaks nicely to me, I just assume they're nice. If they bitch about me behind my back or stab me in the back, I have absolutely no idea. And if someone is a bit harsh or abrupt or doesn't smile, I just think they're not friendly or they don't like me; yet sometimes they end up being the ones sticking up for me.
When someone does me a favour or does something thoughtful, I never think they might have ulterior motives: I just think they're being genuinely kind. And this may very well be the case... or not.
It would be much easier if life was like stories; if there were obvious clues about people's real intentions.
Maybe this is why I love stories so much.
When you read a book, a lot of the time characters' intentions are made explicit. You get insights into their thoughts and motives. Working out why they act the way they do is therefore easy, and you can understand them better and predict what is likely to happen. When you watch a film and a bad guy comes on, there is often some clue: the music, the way they look or their mannerisms.
Not so in real life. I have absolutely no idea what people truly mean, truly want. I can only go with what they tell me. I take them at face value.
When someone speaks nicely to me, I just assume they're nice. If they bitch about me behind my back or stab me in the back, I have absolutely no idea. And if someone is a bit harsh or abrupt or doesn't smile, I just think they're not friendly or they don't like me; yet sometimes they end up being the ones sticking up for me.
When someone does me a favour or does something thoughtful, I never think they might have ulterior motives: I just think they're being genuinely kind. And this may very well be the case... or not.
It would be much easier if life was like stories; if there were obvious clues about people's real intentions.
Monday, 25 August 2014
Dawkins and disabilities: what makes a life worthwhile?
Unless you've been living under a rock, or - like my mother - are blissfully unaware of what's going on in social media, you've probably heard about Richard Dawkins' infamous advice on Twitter to people expecting a child with Down's syndrome: abort it and try again. He later qualified his statement, but still insists that bringing such a child into the world is immoral, " based upon his own
moral philosophy which in turn is based on a desire to increase
happiness and reduce suffering."
This story strikes a nerve with me for two reasons.
For a start, I have a disability myself. I have Asperger's syndrome, which is an autistic spectrum disorder. Yes, it does make my life more difficult or even more painful at times. Does that mean I would rather not be alive? Of course not. Besides, happiness is not necessarily the absence of suffering. Of course, circumstances affect our happiness, but they do not necessarily crush it: if it were the case, people who are poor or ill would never be happy, yet this is simply not true (I'm not going to discuss how the pursuit of pleasure can actually impair our capacity for happiness today, though). And I know my parents love me just as I am, despite the difficulties they've had with me over the years.
Actually, I'm not the only person with an autistic spectrum disorder who's responded to Dawkins. The lady who mentioned the dilemma posed by learning your unborn child has Down's syndrome asked him where he'd draw the line, since she has an ASD. He replied "People on that spectrum have a great deal to contribute, Maybe even an enhanced ability in some respects."
I think that argument is flawed. Firstly, someone's contribution to society does not determine the worth of their lives, and that is very fortunate. How do you decide whose contribution is worth keeping? Besides, you cannot possibly know what contribution a child will make (or not) before they're even born. This guy has Down's syndrome and his contribution is pretty amazing, and he is only one example of the many things people like him are capable of. Moreover, people with ASD do not necessarily have enhanced skills. Some of us are highly intelligent, other of average intelligence, and other stills have severe developmental delay. Some have incredible intelligence but their autism is so severe that they cannot unlock their potential. None of this, however, is a criteria for the worth of our lives.
Which brings me to my second point. I used to work with children and teenagers who had various learning disabilities, including Down's syndrome - and some disabilities that are a lot more profound. Many of them had severe and complex developmental disabilities. They could not feed themselves, they could not talk, they could not walk. Does this mean their lives were not worth living?
Each one of them had a personality and a smile. A smile, do you understand what that means? A smile that says "I am happy to be here with you", "I am happy to see you". They had their likes and dislikes; they responded to people and situations in different ways. They felt the same emotions you and I do.They expressed happiness, fear, or frustration and cause people around them happiness, sadness, or frustration, just like we do. Who are we to say that their lives are not worth living? Since they can show enjoyment of certain things, dislike or distress of others, it demonstrates they feel the same emotions we do, even if they can't articulate them like we can.
Let me tell you about Gary (named changed). Gary was one of those children. I was blessed to be his key worker for 4 weeks. I got to know him and Gary had the happiest, liveliest personality you could imagine. When he smiled, it looks like the sun was radiating through his face. He would clap his hands in mine and laugh quietly. I could tell he was happy to see me. Gary passed away when he was 15. I miss him. I loved that boy very much. He was a human being and he had just as much a right to live as anyone else.
Mr Dawkins' statement leans towards eugenism, and that's evil in my books. I don't think we have the right to decide for another human being whether their life is worth living or not.
This story strikes a nerve with me for two reasons.
For a start, I have a disability myself. I have Asperger's syndrome, which is an autistic spectrum disorder. Yes, it does make my life more difficult or even more painful at times. Does that mean I would rather not be alive? Of course not. Besides, happiness is not necessarily the absence of suffering. Of course, circumstances affect our happiness, but they do not necessarily crush it: if it were the case, people who are poor or ill would never be happy, yet this is simply not true (I'm not going to discuss how the pursuit of pleasure can actually impair our capacity for happiness today, though). And I know my parents love me just as I am, despite the difficulties they've had with me over the years.
Actually, I'm not the only person with an autistic spectrum disorder who's responded to Dawkins. The lady who mentioned the dilemma posed by learning your unborn child has Down's syndrome asked him where he'd draw the line, since she has an ASD. He replied "People on that spectrum have a great deal to contribute, Maybe even an enhanced ability in some respects."
I think that argument is flawed. Firstly, someone's contribution to society does not determine the worth of their lives, and that is very fortunate. How do you decide whose contribution is worth keeping? Besides, you cannot possibly know what contribution a child will make (or not) before they're even born. This guy has Down's syndrome and his contribution is pretty amazing, and he is only one example of the many things people like him are capable of. Moreover, people with ASD do not necessarily have enhanced skills. Some of us are highly intelligent, other of average intelligence, and other stills have severe developmental delay. Some have incredible intelligence but their autism is so severe that they cannot unlock their potential. None of this, however, is a criteria for the worth of our lives.
Which brings me to my second point. I used to work with children and teenagers who had various learning disabilities, including Down's syndrome - and some disabilities that are a lot more profound. Many of them had severe and complex developmental disabilities. They could not feed themselves, they could not talk, they could not walk. Does this mean their lives were not worth living?
Each one of them had a personality and a smile. A smile, do you understand what that means? A smile that says "I am happy to be here with you", "I am happy to see you". They had their likes and dislikes; they responded to people and situations in different ways. They felt the same emotions you and I do.They expressed happiness, fear, or frustration and cause people around them happiness, sadness, or frustration, just like we do. Who are we to say that their lives are not worth living? Since they can show enjoyment of certain things, dislike or distress of others, it demonstrates they feel the same emotions we do, even if they can't articulate them like we can.
Let me tell you about Gary (named changed). Gary was one of those children. I was blessed to be his key worker for 4 weeks. I got to know him and Gary had the happiest, liveliest personality you could imagine. When he smiled, it looks like the sun was radiating through his face. He would clap his hands in mine and laugh quietly. I could tell he was happy to see me. Gary passed away when he was 15. I miss him. I loved that boy very much. He was a human being and he had just as much a right to live as anyone else.
Mr Dawkins' statement leans towards eugenism, and that's evil in my books. I don't think we have the right to decide for another human being whether their life is worth living or not.
Monday, 21 July 2014
Driving anxieties
I am 34 and I still don't have a driving license. This often gets me perplexed looks from people, and endless lecturing about how I really should get around to it.
It isn't all that simple.
I remember the first times I tried driving a car when I was about 17. I remember the terror as I felt the strength of the engine - a strength I was supposed to be able to control. I remember the car jumping as I stalled it, or roaring angrily when I stepped on the accelerator pedal. I hated it.
Then I went away to study, and from then on, I only lived in big towns with good public transport. It was very convenient. I never had to worry about driving - buses, trains, a bike, or asking friends for a lift worked just fine. Moreover, it seemed to me that the environmental cost of driving a car was too high, and that not driving was a responsible thing to do. In any case, I couldn't afford to maintain a car.
However, 2 years ago, I moved back to my parents', who live in the countryside, and my troubles began. Public transport is virtually non-existent, and access to basic facilities such as banks, post offices or shops involves at least a 15-minute drive. I became entirely dependent on my parents to get anywhere. I had no choice. I had to start learning how to drive.
The theory test wasn't a problem. I've always been a fast learner when it comes to purely academic skills. I studied the rules, booked the test, passed it. Simple. Putting it into practise, there's the rub.
I got in touch with a driving instructor, a very kind and patient lady. On my first day, we sat in the car for half an hour while she reassured me that it was going to be OK.
At first, even 20mph felt like I was going way too fast. Changing gears was choppy at best. Surely the car was a vicious beast that had no kind intentions towards me whatsoever. The most difficult thing to handle, though, was (and still is) other drivers. They're not necessarily bad drivers (although many are), but having to constantly take into account what someone else might do is exhausting to me. Passing each other on anything that isn't a main road is terrifying, because perspective makes me feel like that there isn't room enough. My instructor gave me a good tip, though. "Just look straight ahead at where you need to go, look as far ahead as you can; and you'll naturally steer the car in the right direction. Take notice of obstacles but don't dwell on them, because then you'd steer towards what you're focusing on." That helped. I made slow progress for a while, then winter happened - snow, black ice. I stopped the lessons and let time pass.
When I met Nicholas, he soon offered to help. I have to say he's the best driving instructor ever. He is calm and patient whatever the circumstances, and lets me learn at my own pace. He knows when to take me out of my comfort zone, but doesn't pushes me beyond my limits. I have made amazing progress since I first started... almost two years ago.
Two years seems like a long time to learn such a basic skill, right? Well, with Asperger's syndrome, it's not as basic as that. Driving involves concentrating on several things at once - the layout of the road, traffic signs, other users, changing gears, using indicators or wipers - all of this coming to my brain very fast, and my brain needs more time than most people to process information! It also requires anticipating, having to cope with constantly changing situations, and adjusting my actions accordingly, all things I struggle with. If it were as simple as, "If A happens, I must do B", I would be fine - but on the road lots of different things happen everytime and each scenario can feel like learning from scratch all over again. I took the test a few weeks ago and failed because a situation I wasn't prepared for arose and I reacted wrongly.
I am not giving up, though. I have come a long way, and I can drive in many contexts even though it causes me a lot of stress and often leaves me exhausted afterwards. Anxieties can be overcome, even with Asperger's.
It isn't all that simple.
I remember the first times I tried driving a car when I was about 17. I remember the terror as I felt the strength of the engine - a strength I was supposed to be able to control. I remember the car jumping as I stalled it, or roaring angrily when I stepped on the accelerator pedal. I hated it.
Then I went away to study, and from then on, I only lived in big towns with good public transport. It was very convenient. I never had to worry about driving - buses, trains, a bike, or asking friends for a lift worked just fine. Moreover, it seemed to me that the environmental cost of driving a car was too high, and that not driving was a responsible thing to do. In any case, I couldn't afford to maintain a car.
However, 2 years ago, I moved back to my parents', who live in the countryside, and my troubles began. Public transport is virtually non-existent, and access to basic facilities such as banks, post offices or shops involves at least a 15-minute drive. I became entirely dependent on my parents to get anywhere. I had no choice. I had to start learning how to drive.
The theory test wasn't a problem. I've always been a fast learner when it comes to purely academic skills. I studied the rules, booked the test, passed it. Simple. Putting it into practise, there's the rub.
I got in touch with a driving instructor, a very kind and patient lady. On my first day, we sat in the car for half an hour while she reassured me that it was going to be OK.
At first, even 20mph felt like I was going way too fast. Changing gears was choppy at best. Surely the car was a vicious beast that had no kind intentions towards me whatsoever. The most difficult thing to handle, though, was (and still is) other drivers. They're not necessarily bad drivers (although many are), but having to constantly take into account what someone else might do is exhausting to me. Passing each other on anything that isn't a main road is terrifying, because perspective makes me feel like that there isn't room enough. My instructor gave me a good tip, though. "Just look straight ahead at where you need to go, look as far ahead as you can; and you'll naturally steer the car in the right direction. Take notice of obstacles but don't dwell on them, because then you'd steer towards what you're focusing on." That helped. I made slow progress for a while, then winter happened - snow, black ice. I stopped the lessons and let time pass.
When I met Nicholas, he soon offered to help. I have to say he's the best driving instructor ever. He is calm and patient whatever the circumstances, and lets me learn at my own pace. He knows when to take me out of my comfort zone, but doesn't pushes me beyond my limits. I have made amazing progress since I first started... almost two years ago.
Two years seems like a long time to learn such a basic skill, right? Well, with Asperger's syndrome, it's not as basic as that. Driving involves concentrating on several things at once - the layout of the road, traffic signs, other users, changing gears, using indicators or wipers - all of this coming to my brain very fast, and my brain needs more time than most people to process information! It also requires anticipating, having to cope with constantly changing situations, and adjusting my actions accordingly, all things I struggle with. If it were as simple as, "If A happens, I must do B", I would be fine - but on the road lots of different things happen everytime and each scenario can feel like learning from scratch all over again. I took the test a few weeks ago and failed because a situation I wasn't prepared for arose and I reacted wrongly.
I am not giving up, though. I have come a long way, and I can drive in many contexts even though it causes me a lot of stress and often leaves me exhausted afterwards. Anxieties can be overcome, even with Asperger's.
Monday, 23 June 2014
How my asperger's syndrome got me a wonderful boyfriend
As I mentioned here, people with Asperger’s syndrome struggle with social interaction. Because of this, they (or their parents) often worry about how they will find a partner. Well, you know what? My Asperger’s syndrome actually helped me meet the man who has been my loving boyfriend for over a year.
I have often found it difficult to interact appropriately with people, to the point of being labelled antisocial when I was a child. However, I actually like people (most of the time, anyway), and I try to be as kind as I can to others. I consider it the right thing to do – after all, should I not treat others the way I would like them to treat me?
I currently work in a supermarket, and being helpful, friendly and
polite to customers is very important. So I always greet them with a big smile,
and assist them in any way I can. Most of them are regular customers and like
to stop and chat.
Some of them work in nearby offices and come in to buy their lunch every
day. Around April last year, four of them started talking to me – generally to
ask what I would advise them to buy in our reduced-price items. As usual, I
tried my best to be friendly and polite. Now, because of my Asperger’s
syndrome, I find it hard to focus on more than one thing at a time, including
visually, which means I have difficulty focusing on more than one person in a
conversation. So I unconsciously focused my attention (and my smiles) on the
most talkative of them.
Not only did he think I was hitting on him, but he was left with the feeling of floating a few inches above the ground (his words, not mine!). This, unbeknownst to me. He spent the following weeks trying to come up with a way to talk to me and ended up giving me a book as a present (good choice as I'm an avid reader!).
Not only did he think I was hitting on him, but he was left with the feeling of floating a few inches above the ground (his words, not mine!). This, unbeknownst to me. He spent the following weeks trying to come up with a way to talk to me and ended up giving me a book as a present (good choice as I'm an avid reader!).
When I got home that day, I found a note inside the book
with his name and his number. We started seeing each other and after a few
weeks, he gave me a bracelet and asked me if I'd be his girlfriend.
I told him quite early on that I had Asperger’s syndrome. He didn’t seem to mind at all – actually, he finds my little quirks endearing. He is also very patient and understanding. I feel safe around him, because his calm disposition helps me overcome moments of anxiety. It also feels safe to be me – I don’t feel judged when I express my emotions in “less ordinary” ways such as jumping up and down, dancing or singing, or when I have a meltdown! He never pressures me into being a woman I’m not, but encourages me to grow into who I am meant to be. He makes me feel ready to face new challenges, such as driving – I will write more about that at some point!
I told him quite early on that I had Asperger’s syndrome. He didn’t seem to mind at all – actually, he finds my little quirks endearing. He is also very patient and understanding. I feel safe around him, because his calm disposition helps me overcome moments of anxiety. It also feels safe to be me – I don’t feel judged when I express my emotions in “less ordinary” ways such as jumping up and down, dancing or singing, or when I have a meltdown! He never pressures me into being a woman I’m not, but encourages me to grow into who I am meant to be. He makes me feel ready to face new challenges, such as driving – I will write more about that at some point!
But the bottom line is this: I met this wonderful, loving,
caring, committed, funny, romantic man… because of a misunderstanding stemming
from my Asperger’s!
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