I have been feeling like I need to write for the last week or two but I have been putting it off because I have been unable to sort through the tangle of thoughts that are in my head. My mind feels like it is cluttered with so much going on but it can’t focus on any one thing. Part of that is going back to work after my injury, but part is also going through the diagnostic process for ASD and what that means in relation to my past and my future, and who I am as a person.
At the beginning of December I had an accident where I fell off some rocks (boulder) while holding a child, straight on to another large boulder. My leg got trapped in the space between the two large boulders and I hit my buttock and lower back directly on the rock surface without breaking my fall as I didn’t let go of the child I was holding. Unfortunately this accident led to a sprained ankle and knee, a severe hematoma stretching from lower back to upper thigh, various bruises and scrapes and a fractured spine. I spent three weeks in bed, including all through Christmas, and only went back to work on reduced hours after 12 weeks. I am four weeks in to my back to work plan now, with another week to go. Then I should be cleared for full time work again. I’m still in some pain, and still find sitting uncomfortable, but I had a cortisone injection in my spine earlier this week which seems to have helped.
All this time off, particularly the enforced bed rest, has given me a lot of time to think and reflect, to learn (mostly through pod casts as it was hard to lie in certain positions to read or watch TV) and to question. My psychologist and I had talked about ASD diagnosis for me in the past, but I had dismissed it for several reasons. I was scared that I would not get a diagnosis and the part of me that identifies with the autistic community would be squashed again. I was scared of digging in to my background, analyzing my personality and family relationships, examining who I am. I know this is what I am doing in therapy anyway, but the diagnostic process is a more intense look, particularly at childhood and particularly at what other people’s impressions of your development were. I didn’t want my fledgling identity destroyed by other people’s ideas of who I am. I have worked hard to try and figure out who I am and I felt the skeleton I had begun to flesh out might be crushed.
However….the more I thought and learned about personal identities of all types, psychological and neurobiological theory, history – world history as well as biography of all types of people, the more I wondered about who I am and what my personal history meant. I wanted to know. I wanted confirmation, almost permission, to view myself through the lense of autism. To reframe experiences and experience ‘ah-ha’ moments – that’s why that happened and that’s why I do that. I wanted to find my community and not feel so alone anymore.
And so the diagnostic progress began. Luckily I still had almost all of my old school reports and my Plunket book (Plunket book = child development record book) which my mum filled out until I was 9 or 10 plus a couple of sporadic updates. So those went to my psychologist. Then questionaires for me – AQ and EQ which I’d done before – and RAADS-R plus the PAI, MCMI-III and TSI-2. Some of these are aimed at autism diagnosis, some at personality, trauma or clinical syndromes. My parents then filled out the RQ and we both filled out some questionaires aimed at diagnosis of females with autism. All of the results so far have showed that I am well over the threshold for diagnosis with ASD.
Then it was on to the WAIS-IV which measures cognitive ability in specific domains of intelligence. This showed my areas of strength to be vocabulary, arithmetic, and general knowledge, and my main area of weakness to be digit span, followed by letter-number sequencing. From what I can gather this means my knowledge, verbal comprehension and expression are good, but my working memory, auditory processing and attention are not so good. Interestingly enough, apart from arithmetic, my strengths and weaknesses are the same as Little G’s.
Because this process has taken place over a series of weeks, and is not over yet (more information gathering, plus a developmental history appointment with my parents next week, I have been feeling rather worked up about whether I was going to receive a diagnosis and what all the test results were saying. Last week I was getting agitated towards the end of my session with my psychologist and he asked me why. I explained I was nervous about the testing and felt on edge, he said for him the ASD diagnosis was never in question, it was just that we needed to go through the process and gather all the evidence to support it. The relief that simple sentence gave me was unbelievable. But also ….there was a sadness I hadn’t expected.
In the week or so since I have been doing a lot of thinking and re framing. I feel a little sad and sometimes a lot sad. Sometimes I feel like it explains all my weirdness and I can be free to be myself. But sometimes I just feel lonely and bereft and like nothing will ever get better because how can it when my brain wiring is what makes me different.
In my last session with my psychologist he gave me some further feedback from the MCMI-lll. The picture it paints is not pretty. Depressive, anxious, avoidant, aloof (schzoid), negativistic (passive-agressive), self defeating (masochistic) and extreme (borderline). Patterns of behavior I have adopted to make sense of my world and my experiences. Things I do or ways I act due to some of the things that have happened to me. These also make me feel very sad, and very defeated by life. But I understand more now about why I feel the way I do – ASD and sensory issues, plus what looks to me like some attachment problems, causing maladaptive behavioural patterns. I’ll admit, there are more maladaptive behaviours than I had imagined, and they confirm my picture of myself as someone damaged, broken, unworthy. But I guess knowing is the first step to improving my psychological state, and accepting myself as someone with autism. And in some ways it feels like validation for the shit that goes on in my head and my struggle to cope with “normal” life.
It feels like I am a long way from a place of peace but at least I can see there is a road now.
Ka Kite
Month: March 2019
Searching for Meaning
I have been off work for 3 months following an accident in early December where I fractured my spine, sprained my ankle and knee, and ended up with a severe hematoma from my lower back to my upper thigh. While I’ve been off work I’ve listened to a lot of pod casts on all sorts of topics, as especially initially it was one of the only things I could do while lying down that didn’t cause me discomfort. This has led to a lot of thinking and reflecting on my life and who I am, and what I want from being here. I feel like I am searching for something but I don’t know what it is which makes it very hard to find! It’s like there’s something floating around in the ether, just out of my view but every time I try to focus on it, it slips away.
One of the topics I have approached from many directions is the idea of meaning, and that if you focus on the meaning in life you are more likely to be happy. Happiness is a seductive concept for someone who spends a lot of time depressed so of course the idea that finding meaning can help you feel happier holds a lot of hope for me.
So what is meaning? To me, finding meaning is about finding purpose. Why am I here? What should I do with my life? Is there a point to anything I do? My brain, especially in depressed/low mood state often answers this question with ‘no’. That there is no point as my life is fleeting in the grand sweep of humanity, and within 4 generations (if I’m lucky, 2 or 3 if I’m not!) I will be all but forgotten. Mexican people believe that there are “three deaths” – the first when you physically die, the second when you are laid to rest, and the third when you are forgotten. If all of life is a march toward certain death, then what should that journey be filled with?
I have always been fascinated with the various religions and cultural beliefs surrounding death, and with death itself. I know I am not alone in this, my quick google search on just the word death brought up more than 3.3 billion results! There is much written on the fear of death, and the glory of death, but I am more interested in how to be comfortable with the knowledge life is fleeting and that this doesn’t mean there is no point to being happy.
When I write this it seems obvious that we should live to be happy if life is fleeting. Which is what I understand the central tenant of hedonism to be – that if life is a flash in the pan of humanity then it should be lived to maximise pleasure and minimise pain. That self gratification is the only sensible purpose of a life that may be cut short at any minute. A ‘you only live once’ philosophy. So I explored the concept that I could live focusing on what would give me the most pleasure, only to ‘run in to’ my ethics and values, which were dictating to me that I could only be happy if I was not hurting anyone else (or at least minimising that pain) while pursuing my own ends.
So then I explored what it might look like to live your life devoted to a cause you believed passionately in. There are many examples of people like this, from ancient times forward. These people fascinate me and I admire a great many of them. What I found though is that you can be passionate about a cause and dedicate your life to it, and cause other people great pain at the same time. Some times people are so focused on achieving whatever it is they believe to be the greatest good that they are prepared to sacrifice a great deal to achieve their goal/s. Great dictators spring to mind here.
I read, listened and explored all sorts of events and ideologies from here. From the Crusades, to struggles for independence in various countries, socialism and communism, facism, the French and Russian revolutions, terrorism, the stolen generation, various wars, Vikings, the Underground Railroad, NZ history, Chinese dynasties, stories of shipwreck and tragedy and exploration….you get the idea. Anything I could get my hands on about the history of the world and it’s people I read and listened to.
And I learned that life is a paradox. There is not one truth. All sorts of contradictory and utterly illogical points of view can exist at the same time, and be at least partly right from various perspectives. People view the same event from different angles, using their unique perspective to decide what is acceptable and not, to them. An individual’s perspective is influenced by biology and genetics and life experiences, but also culture, world events, religion, the pervading ideas and government of the time. Their genetics may cause them to be more or less interested, or more or less involved in events of their time, but sometimes there is just accident or coincidence, or being in the right (or wrong) place at the time when something impactful is happening.
So all this brings me back to me. What is my purpose? What do I believe in? For, as many revolutionaries as there are out there, there are just as many people like me struggling to make sense of it all.
I remembered listening to the hedonism podcast and the research I had done, months ago, on that ideology. For some reason it had stuck in my mind and of all the concepts and things I have learnt, that one continues to fascinate me. I’d also heard about a short, non controlled, study done where researchers gave participants a camera to record 10-12 photos over the space of a week of the things that gave their life meaning. And from that they discovered that where people were physically involved in the things that gave their life meaning (by taking pictures, as opposed to talking about them), there was a discernible increase in happiness levels. The reason this study interests me, and why I have related it to the theory of hedonism, is that when I think about the things that give my life meaning, these are also the things that bring me pleasure.
At this stage I need to do more research on the items that bring my life meaning, as I’ve only been able to come up with a couple. I feel stuck on this issue, so I’m going to go back and do some more research all the different types of Hedonism (and surprisingly there are at least 7 types), and the related philosophies, to see if I can figure out meaning and it’s relation to me.
And I wonder – this is a passing thought at this stage – whether my attraction to the concept of Hedonism is due to my tendency to think in dichotomy, and push away any pain I feel as ‘bad’ using self harming behaviors……
ASD, BPD and Me 