Tasmanian Times

The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. No price is too high for the privilege of owning yourself. ~ Friedrich Nietzsche

The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. No price is too high for the privilege of owning yourself. ~ Friedrich Nietzsche

Article

My life with autism …

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I want you to understand what my life is like as an over 50s woman with autism. I want to bring you into my world, if I can, to show you how modern  technology is shutting me out  and shrinking my world bit by bit. I hope I am able to articulate to you just how difficult parts of my life have become because my frustration at not being understood is sometimes overwhelming, and I really need you to understand me on this issue.

Let me tell you a little of my life before I found out I was autistic. I did very well in primary school but I hated nearly every minute of it. I just wanted to stay at home and learn from there. I felt so comfortable at home that I could quite happily have never left it except to go to my favourite playground. I hated the feeling of being controlled by others in everything I did, from where and when I went somewhere to what I thought and said. I never felt autonomous, like I owned myself. I enjoyed learning but we never got to explore a subject to the depths I would have liked, and learning just enough to pass a test never satisfied me. I was bored most of the time. I sat the selective schools exam and was offered a place in the best selective girl’s school in the state. I thought I would be able to really engross myself in a subject in high school so I was  looking forward to going. What a disappointment that turned out to be.

I had been designing houses since I was 4yo and by 6yo I decided I wanted to become an architect. It was the 1970s and I didn’t realise that certain careers were not available to women. I soon found that tech drawing was not on the curriculum of my girl’s school so I would not be learning anything that would help with my design aptitude. I wanted to study art but a girl who bullied me was going to be in my class so I dropped that idea. I had always loved Latin but the Latin Mistress pronounced the letter ‘V’  like a ‘W’, which made the first lesson sound like a ‘carry on’ movie. There was no way I could do 6 years of that.

By my second year of high school I realised everyone  was preparing for university and knew where their lives were headed except me. It took a while for it to dawn on me that my peers were from very wealthy families and that my single mother could not afford to send me to university.  I was learning things that were of no use to me and passing tests that would get me nowhere. I decided to leave school as soon as I legally could to get an apprenticeship.

Unfortuately, there were few options for girls in those days and neither hairdressing nor nursing were for me. I asked my English teacher, who didn’t like me at all, whether she thought I had the ability to learn journalism. She narrowed her eyes at me and told me I would never become a writer of any sort. I asked if that was her true opinion of my abilities or if she was saying that because of her dislike for me, and she told me to get out of her office. My options were narrowing.

The day dawned that I became of legal age to leave school and home. I was 14 years and 9 months old. I went to school in my uniform and cleaned out my locker. I went to classes until recess when I went around to all my friends to say goodbye. I walked out that gate and just kept going.  Half way home I went into a shop and got a job there selling sheets and other bedding. When I got home I packed a bag and waited for my mother to get home fom work. I informed her that I had left school, got a job, and would be moving out of home the next day. Mum had always known I was different to other children and we discussed my choices rationally, without panic on her side or anger on mine. I wasn’t rebelling against anything, I just needed to control my own life.

For the next few years I chugged along in retail and got a second job in a pub to help pay the rent. I saved money because my social life didn’t involve restaurants or fancy clothes. I loved reading and learning so I kept educating myself in the things that interested me. My lack of formal education certificates kept me from getting more interesting work but I wasn’t unhappy in the work I did.

Fast forward to when computers became a thing. I didn’t have to work with this new technology but my mother did. She said it was easy but I had my doubts. I did a short computer course and it was not as scary as I thought it would be because there was only one operating system and one way a computer could work. That changed rapidly and pretty soon everything I knew about simple computers was swept into history. I was glad I wouldn’t have to ever use one again because they were no longer logical and consistent.

Slowly, computers started creeping in to my life. First was the ATM. It took a while to get the gist of them but I was soon using them all the time because they were predictable and consistent in what they could do for you. Then the internet came and everything I used to do by phone or in person became internet access only. That is when my world started falling apart.

I need my life to be consistent, predictable, and logical to be able to navigate my way through the world.  Modern computer systems are none of these things. There are so many different systems and programs and they all work differently. I can no longer go into an office to get someone to push the buttons for me because there are no offices for many businesses and government departments. Computers have locked me out of  many aspects of life and I would like to tell you just a few of the ways they have made my life harder.

Language is very important to me. As individuals we all speak differently and small differences in the words and phrases we use have a huge impact on how I  comprehend things. Instructions on a website are never written by just one person but by many people using different words and writing styles. I can’t follow any instructions or answer any questions when the syntax varies, so I can’t fill out forms or follow simple instructions online. I usually end up having a meltdown because my brain is in overload as there is no logic it can follow. I wind up screaming, sobbing, and rocking. Whatever piece of online business I was trying to transact becomes a closed book forever. I can’t do my taxes, pay my bills, or deal with bureaucracy at all.

All websites are put together differently. Some ask you to follow arrows, others to push a button, and some I can’t figure out what they want me to do. They are inconsistent so my brain says they are illogical and it shuts down for more sobbing and rocking.

It takes me ages to learn to use a particular computer program in even a simple way. I need written instructions for everything but computers do not come with instruction manuals. The instructions are inside the computer and I can’t access them. Computers are like big secured boxes with the key locked inside, rattling around and taunting me with my ignorance. When I finally feel confident enough with a program to get to the stage where I can send an email, someone changes it all and I am once again locked out.

My telephone and internet provider has staff reading from a script that was put together by more than one person. When I have an enquiry I can never understand their answers as they rarely line up to my questions. I have had to put my partner down as a contact for most companies I have to deal with because I shake at the thought of dealing with them. I start rocking when I know they have to be called and don’t stop until my partner puts down the phone.

I have  been given access to many fantastic things via the internet and I have been able to further my education and study a subject as deeply as I want to, seemingly without limits. But technology has also shrunk my world until I sometimes feel it is strangling the life out of me.

My autism is like a blindfold. Imagine I am blindfolded and you are not, and we are both given a stack of boxes to sort into size and shape. You can do it easily without a blindfold because you can see the differences in the boxes. I have to feel each one and remember their size and shape in order to arrange them. It takes me a bit, but I can do it. After a while I feel confident that I can give any box that is asked for just as quickly as you can.  Until someone asks for the blue box.

That is what my autistic life is like. I can’t change it, and there have been times I have wanted to end it. It is getting harder but I hope you have a better understanding now of how my brain works and why I sometimes can’t cope with simple tasks that you take for granted.  If you work in IT, I hope you will think of me occasionally when you are designing new software and programs, and remember that my blindfold is firmly in place with no way of peeking over it.

Lola Moth lives in rural Tasmania and enjoys sitting in the sun and reading. She has had an interesting life, so far.

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2 Comments

2 Comments

  1. Christopher Eastman-Nagle

    November 24, 2018 at 9:25 pm

    I am slightly autistic too Lola, in the sense that I am socially inept and have a more specialised consciousness which is serendipitously good in terms of very concentrated meditative reflection and a capacity to concentrate.

    You have been particularly unlucky in some ways. I had a few really great teachers, and some very forgiving and loving parents, and between them they managed to get me onto the road of life.

    During my early twenties, I went through what I can only call an existential crisis that completely disabled me. I almost ‘drowned’. In retrospect, my autism intellectually subjected me to a primitive consciousness of a world about to bankrupt itself, and the more I wrestled with trying to make sense of what I was ‘seeing’, the more I sank. I spent the next 30 years functioning, but existentially and under water. It took until the turn of the century for me to start to get a fix on what was going on.

    I do not regret a thing. I would have it no other way. If someone could wave a magic wand to take me back and let me re-run my life as non high-functioning autist, I would refuse, even though my condition has cost me a lot in some ways.

    The perspectives I now have have been very hard won, but I think my condition helped me more than it hindered.

    Life is always a series of trade-offs, no matter what your condition is. It is just that when you are a bit autistic, the trade-offs can be a bit asymmetrical and potentially unbalancing.

    But you learn to work around it, like everyone else does .. or you don’t …

    Thanks for your insights, Lola. I think your willingness to share them make you an interesting character who seems to have plenty left in her to give to the world as a worthwhile legacy; a legacy to leave behind for her successors, familial or otherwise.

    Go in grace, Lola. You deserve it.

  2. Dr d h emberg

    November 24, 2018 at 3:21 pm

    Lola … you are an inspiration!

    I have worked as a counsel, a teacher and a professor .. and I would have loved to have you as a student. You are clever and interesting.

    You will do well in life ..

    Just go do it …

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