This week has and still is World Autistic Awareness Week much to my surprise when a friend posted a short cartoon on Facebook. Perhaps if I had had more warning I might have done something myself to help educate my real-life circle of relationships but I am not there yet. What is good about making videos to raise awareness is that it allows me to see autism from another viewpoint and appreciate how much more difficult some aspects are for others.
Take sensory overload for instance. It seems my limits are quite generous for someone on the spectrum. Whilst some people have to wear sunglasses to go around a supermarket because of the brightness of the lights, I am not aware that is lighting affects me. I do notice high contrast situations though. For instance this morning I was lying in bed having woken up and struggled to return to sleep. It took me a while to realise that there was a crack between the black-out curtains that allowed light to shine on right where my pillow is, and hence where my eyes are. Getting up and closing the gap allowed me to sleep for a few hours more.
Driving at night is also troublesome because the head-lights of other cars literally cause me pain. I manage by flipping the rear view mirror to reduce the incoming light from cars behind me. There isn’t much I can do about cars driving towards me, but those are short-lived and bearable if there isn’t too much traffic about. It is the cars that are behind that are worse because they can literally follow me for the whole journey. Maybe this is one of the reasons I like driving through the night to get somewhere far away. When the kids were small, we would drive from Scotland to London to visit the grandparents. We would start our trip after 9pm and arrive in London around 6am. The kids would sleep and the traffic was much reduced so the light “pollution” to me was minimised as well.
It has just occurred to me that I have always had a headache and maybe it is my autism that can explain that. I remember as an 8 or 9 year old getting my first glasses. I would always be asked how my eyes were when I went for check-ups and I would always reply I had a headache. I gave up mentioning it after a while before there seemed to nothing to explain the pain. After my transplant I thought the drugs I take caused my light sensitivity to get worse and perhaps that is actually the case but so what. I do know that I find night time so much easy than day light, so much more relaxing. Perhaps this could be why I become more awake once it gets dark, I literally have much energy to give because I am suffering less pain. Interesting thought. It might also explain my preference for night-time photography too.
I wonder if I wasn’t so short-sighted whether I would have worn sunglasses more. I remember often feeling left out when we went on package holidays to sunny places as kids. I would have to use horrible clip on sunglasses which were easy to lose or break whilst the rest of the family could where normal sunglasses. The one advantage to going to sunnier climes though was that the sun sits much higher in the sky and is therefore less likely to shine in your eyes.
My light sensitivity might also explain why I have always wanted to wear hats. I used to love my hats as a kid, straw trilbies were my favourite but basically wherever we went somewhere new I would try to get a new hat. I loved my matadors hat (though I really wanted the whole outfit, I thought they looked splendid) but the sombrero was so good. Life moved on (I realised that matadors actually kill bulls which seems pointless now) but I still wear hats. It is usually a baseball cap, but for any longer trips it will be my wide-brimmed Tilley hat which due to its lacing, will stay on my head no matter what the weather throws at me.
The night time is also much quieter and again this allows me to relax more. I don’t have the need particularly to wear headphones in the street like some autistic people but I do go out of my way to walk on quieter streets. There are places that I would rather not go though. Restaurants are very challenging nowadays. Noise levels can get too high as people “enjoy themselves” but the other thing is that there will be multiple conversations going on and I just can distinguish the voices or the words. It all becomes a distressing mush that wears me down to a point where I have to leave and get outside to regain my sanity.
The work environment too can be problematic. Phone calls can be going on, printers spring into life, conversations start up and outside buskers can be playing badly. Recently I have taken to wearing ear plugs which are very effective at cutting down outside noise but they do have a side effect of my co-workers not understanding why they don’t get a response when they talk to me. Equally there are times when I have had enough of the stuff that is twisting around in my brain. Silence can amplify clinging or destructive thoughts and if that happens I tend to have to get outside for a (hopefully quiet) walk and some external stimulation.
I am struggling a bit this week though. People talk about how a diagnosis of autism has freed them. They no longer beat themselves up because they can cope with things others seem to find so easy; they accept their limitations and live with the consequences (even if they suck). They give up work and the lack of stress makes their lives so much more enjoyable (though probably poorer). There are some wonderful videos of autistic people who are enthusiastic and at ease (at least during the video filming) and I wonder whether that could be me. I feel I have been given a tool that could help me decide what to do with myself but currently I feel I probably do too many things, in too random a way. I think I need to simplify my life, but I am sure what to get rid of and what to embrace. There is too much choice perhaps and it overwhelms me. That’s autism for you though, or at least, for me.