Diagnostic process

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