I am sitting here wondering how long I have been suppressing my feelings. Sometimes I find it takes somebody else’s misery to knock me into finding my own. I have just read a comment on my blog from Amanda saying she is sorry I am missing the sunshine in Canada then pointing out that since she lives in B.C. she can’t see the sun because of the pollution caused by the wildfires. The wildfires I saw on the television whilst I was in Vancouver were terrifying, living amongst them must be awful. [I do wonder though how the wildlife is fairing too, the TV always concentrated on the loss of homes.] Then I wanted to comment on a post The Silent Wave made yesterday because seemingly out of the blue, this prolific thought provoking writer was “crashing” and I felt the need to support her and in doing so, I could feel my own tears and sadness too.

I guess I shouldn’t be surprised. After a bit of a honeymoon period on Friday, I really struggled after the argument on Saturday to settle myself. The language assessment for autism last Thursday was a strange experience I suppose. I had no idea what it entailed when I went in the room with the therapist and from the off I knew it was going to be challenging. After clearing up the possible interaction of my pre-transplant Wilson’s disease and my cognitive functioning (Wilson’s can cause lesions in the brain and therefore cause permanent changes to one’s personality and behaviour), I proceed to be tested with a number of word games.

I have long recognised that I am a visual learner so playing with words and letters tends to lead me to closing my eyes to concentrate and form a picture. For instance the first time test was listing as many items in a category as possible in a minute. This is not an easy thing for me to do unless I can form that image. I covered three categories: animals, words starting with the letter T; and objects found in a school. Animals is not too bad, I can picture my trip on Vancouver Island, a farm or a zoo and list the animals I see. Similarly with a school, I can visualise the scene and basically name anything I see in it. The letter T though is another matter. Boy did I struggle, it felt like I was waiting for associations to pop into my mind and most of the time, my mind was blank. No surprise then that the school category scored the most words.

Another test was to build a sentence with three words. Sounds easy but I struggle holding onto the words in the first place. I repeated back the words to give myself a greater chance of remembering them and allowed a possibility to form in my head. The next stage was to construct in my mind the sentence that covers the idea that has formed. It is a skeleton of the idea so the next stage is to refine and fill out the details, finally I read out the sentence in my mind to see if it sounds right and if it doesn’t, rearrange it until the essence of the idea is covered correctly. Only then do I vocalise my answer and even then, I am not sure if I have it right. When I speak it doesn’t necessarily sound like it did in my head. A added complication was to construct the sentence with the three words in the order they were given.

There were many other tests over the hour, but the last test was retelling a story that the therapist read out.  As usual I closed my eyes to listen. It was a lengthy passage with seemed ambiguous at times and had lots of important details. I tried to file the details away in my mind but there was too much information to store and so I had to ride above the details, letting my mind chose what it remembered whilst I focused on sorting out the main story. There were also some hidden humour in the story which wasn’t expressed in a straightforward manner but sort of implied at. Looking back on it I am reminded of when I did my counselling skills training. Listening to people speak for 15 minutes, occasionally clarifying some of the points they make and then summarising the session at the end was terrifying for me to start with but I seemed to be able to develop the skill over time and trust that I could do it. This test was similar, I had to let go of the fear of forgetting and trust in myself and my ability. I did okay but was fuzzy on details and on the humour of the main character involved.

At the end of the session, the therapist said it was clear that I was on the Asperger’s scale, that is one could say high-functioning autistic. I kept a straight face at this point, I thought the modern terminology was “on the Autistic Spectrum” rather than using the judgemental phrase “high functioning” but I let it pass unchallenged. And anyway I knew what she meant and for some reason I was moved to tears that she could tell my ASD just from the words I had spoken. It was “obvious” to her she said. I guess it was so lovely that a complete stranger could tell the difficulties I had in such a short time, after all it took me nearly 50 years to work out.

And perhaps it is the recognition that I crave. Rather than my peculiarities making things awkward, they would be accepted and recognised as signposts for the struggles that are going on inside.

I was out cycling with three friends on Monday morning, one of which knows about my ASD because she reads my blog and just happens to be a child psychiatrist who specialises in girls with autism. I haven’t felt able to mention my ASD to the other people we ride with and this occasionally crops up as an issue. I thought the speech therapy tests would make an interesting topic of conversation which at the same time would let my other companions know that I was on the spectrum. When we sat down for coffee and summer fruit tarts, I mentioned to the friend in the know that I had received the appointment and went on to relate the experience. At one point I made it clear that the appointment was within the autistic adults support team.

Was this a clumsy way to tell my friends? Possibly. It seems to me they were silent after I labelled myself autistic. Perhaps this is not a great way to invite my friends to ask me questions but then what would they want to know? I guess I am left a bit unnerved by the situation. The rest of the cycle carried on as normal, we chatted and said our goodbyes as usual. Does this change anything? Only time will tell.

I guess the heart of my situation is one of uncertainty. I have yet to find my rhythm in being home though I am fighting to put a new structure in place. I am trying to get up at 8am and walk the dog. I am trying to go swimming at 3pm most days and so get into work early enough to do that. I am trying to use my bike too. I am trying to go to the swimming club twice a week. I am trying not to eat sweet things, avoid carbohydrates in general and eat more protein. My hope is to lose weight and that the structured days will allow me to accomplish more creative things and be more resilient to challenges like work.

Today was an unstructured day. I went to the swimming club last night and worked hard. This morning I could feel my tired muscles and didn’t get up until 9am. So the dog was walked late. I gave a lift to a friend into town just before 11am and went shopping afterwards. I then watered the house plants, plotted some cuttings on and took some more cuttings. After lunch the day seemed to come to an end. It is in this wilderness that I can get lost, and in losing myself, I lose sense of any accomplishment I may have achieved. Only now in my writing do I find myself, recognise my achievements and acknowledge where I am. I wonder if the tears are still somewhere inside me?

 

 

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