It has been over two weeks since I started writing this. A second ski holiday and all the pressure leading up to that got in the way. So let’s see where this is going.
I went to see my autism support worker on Monday. I think it was the first time that we had a coherent session. By coherent I mean my difficulties didn’t take the conversation off at a tangent. These tangents were helpful in getting a better understanding of my issues but they stymied overall progress in getting me settled in my autistic new skin and coping with life. After Monday’s session I felt I was beginning to not only understand some concepts but actually apply the theory to my life in a useful way. The things we discussed felt like puzzle pieces starting to complete an overall picture rather than random blocks that left me more confused than ever.
Looking back I think there are four main areas that we were tackling. Two were due to auditory and visual stimulation. Then there was executive function. Finally there was the sense of being alone.
I find it strange that I may know something but it takes a real-life situation for it to make sense to me. This is the case with auditory processing. I have excellent 80’s pop music recall from a snippet of some notes, but I have problems distinguishing between multiple conversations. I have good pitch and can harmonise with songs relatively easily but I struggle blocking out background noise. As usual on my skiing holiday I did not sleep well. I seem to regularly wake up at 4.30am and then struggle to further sleep no matter how late or early I went to bed. I assumed something was waking me up and I wished I had taken ear plugs. The 4.30am wake up seemed to have become a habit because on my return I woke up at a similar equivalent time allowing for time zone differences. I tried using ear plugs and it worked in that I somehow slept through and for the first time for a long, long time I felt I had a refreshing sleep.
It would appear that my auditory sensitivity means I don’t sleep well. So ear plugs at night it is. But there is an additional issue. Ear plugs worked very well at blocking sound that removing them can feel too sudden a change in a soundscape. A transition is helpful which is where headphones can have a role. I have noise-cancelling over-ear headphones. With noise-cancelling switched off they provide a dampening to the soundscape that can make a transition easier. In fact I am wearing them now. I am still aware of the sounds coming from the traffic outside and the noise in the kitchen but the headphones are reducing their impact so I can still concentrate.
I think I will switch to the current timeline for this bit. I am not sure how we got onto it, but I mentioned needing an eye test. It turns out there is a specialist optician in Ayr that has developed a method to help people with many special needs, autism being one of them. I think it involves coloured lenses but I’ll let you know because I am on a train heading there for an appointment this afternoon. I found this possibility rather exciting. From a young child I have been complaining of headaches. Constant headaches. I now believe this were caused by oversensitivity to light. Again it seems bizarre to me that it has taken me fifty years to understand that weird boy that insisted on wearing hats probably did so not only to identify his difference, but also to protect his eyes. Is it possible that I can reduce, perhaps removed this cause of pain? As I said exciting times.
Right, so that auditory and visual sensitivity dealt with. What about executive function then? As I have written (probably many times) before, I have problems making decisions. I do not intuit a solution, I have to work through all the possibilities and choose the best course of action. Often that choice is not clear and causes me distress, and always there is a doubt that I may have it wrong and a need to continuously cross check my chosen option. It gets to the point that I push decisions away for a time when I am better able to deal with them. Sometimes (often I hear my partner saying), that time never comes. We talked about using tick lists in the past and on a good day I will do that because it is also a good way of combating depression by visualising the progress I have made in a day. Getting out of bed and brushing teeth are the level of detail I will go into in this case.
But tick lists alone are not enough. There is a need to prioritise and additionally for me, there is a need to recognise when I am best able to do something. All activities take energy, but some impact of my autistic reserves more than others. For instance going for a walk with the dog will generally help me recharge a bit of energy because of its solidarity nature and being outside. Meeting other dog walkers and listening to someone’s moans and groans can have a negative effect though. Making decisions, giving up control (e.g. travelling when somebody else controls the vehicle) and dealing with people are probably the hardest things for me. It is better for me to aim to do a limited number of these between recharging activities. I also tend to have most energy at the beginning of a day so ticking off a few of the difficult things each morning is easier than leaving it to later in the day. Generally I would say I need at least one entire day each week where demands are light. Traditionally this would have been the weekend, but since weekends usually have people around, this wouldn’t count for me. Making the eye check-up appointment, organising the travel and taking the trains required to get to Ayr are examples of things I find challenging.
Lastly there is the sense of feeling alone, of being different. This can only really be tackled by finding and communicating in someway with people that are like me. I obviously do some of this through my blog but I need real human contact too. I am too good at not acknowledging other people’s comments or for some reason forgetting what they said, or seeing how important I am to other people. Call it low self-esteem if you will but I suspect there is also some sort of social understanding issue getting in the way here. I need to connect with groups (individuals seemed to get dismissed in some way) that will tell me straight what impact I have on them. This requires a great deal of trust which takes time to develop.
My wife and I talk about deep meaningful conversations. It is these kind of conversations I need to feel significant in the world. Like many people I suspect, I always find it easier to approach a group if I have a friend there already but usually I have to enter groups on my own. There are three groups I can think of at the moment that I could take part in. There is an “Andy’s Man Club” in my town but that feels too difficult partly because I fear the cultural differences of being an Englishman in Scotland. There is a late diagnosis autism support group which I don’t identify myself belonging to yet (is that fear I feel of being publicly identified this way?) irrational though that is. Finally there is the transplant sport group based in Edinburgh.
It is the latter group that I have approached and become a member of. I will probably take part in the UK Transplant Games later this year in Birmingham. I know it isn’t anything to do with autism but it is a minority group that I feel comfortable in because we all share a fundamental life changing experience. It will be challenging for me because I am different. Do I go to the gala dinner for instance? Our first meeting was in the middle of a golf club lounge bar complete with large screen television showing football in my vision, many groups conversing, drinking and eating. I sat with my back to half the room. Not an idea setup for me. It isn’t an autism group but it is a group where I can start to build new relationships and belong to. It is a start on putting myself out in the world and doing something, that for me is important. Through this group I will be celebrating my life, honouring the person that died for my life to continue, and raising the profile of organ donation and the need for more people to consider being organ donors. It is a step in the right direction as well as a challenge that I feel I can do.