My hidden army
I hope this post finds you well. Having now finished my final piece of coursework for year 1 of my MA (only need to submit hard copy and online) I treated myself to attending a conference at a university in London. The topic was autism and ageing - really relevant for one of the taught modules for next year but also highly under researched with increasing importance. I had only knowledge from my own experience as an autistic person so was looking forward to seeing what research has been carried out to date, what new paths are opening up and what needs to be done. I am also getting used to going to conferences so as to build confidence for the future with potential networking.
One outcome that was discussed was that of some individuals (myself included in this) having a 'hidden army' supporting us to manage holding everything together - from things including washing and bills to things like problem solving. I am going to blog about my 'hidden army' in this post, what I use my hidden army for and why I need such a hidden army.
One reason I need a hidden army is to help me with problem solving, especially when I head towards overload of either information or sensory input. My brain often feels like it lacks capacity; it's almost in certain situations my brain short circuits, a bit like when a fuse blows in the electrics and you have to climb under the stairs to flip to switch back on. Instances include panic attacks and information overload. Unfortunately, I can't just 'climb under the stairs' when my fuse has blown for a quick fix. Normally when you climb under the stairs (or certainly in our house) there's a bit of clearing, clambering and crouching to get to the fuse box and then trial and error to make sure you get to the right fuse. Similarly, it takes a while to 'decompress'. My hidden army is like the trip switch. They are the ones that stop all the fuses going, rather soften the blow and isolate the problem before it gets out of hand and explodes everywhere. My knowledge of electrics is limited - I am no electrician. However I do know what happens when a fuse blows in our house and how my hidden army help me. The sort of examples here include death by information accompanied by a change or transition, an overwhelming decision which I cannot process and am not quite sure how to process or big changes. Through breaking things down and almost acting as PA, the trip switch is triggered instead.
Another scenario my hidden army help me in a 'behind the scenes' manner is helping me with executive function, giving me space and time to work on my studies and the many projects I am involved with. I find I have a limited amount of brain space when I have to process sequences of additional things like doing washing, cleaning and the worst of the lot - cooking food. Washing clothes isn't too bad - you just shove it in the washig machine. The problem is if you have to visit a laundrette. When I lived in Germany, I had three meals I ate on rotation because I did not have the brain power to cook nice food nor organise the ingredients and various cooking processes (many which happen simultaneously). I was never particularly good at food tech/cooking classes at school and my somewhat erratic and explosive teacher in year seven somewhat has scarred me (thanks Mrs B, forever ungrateful for that, cheers) and the anxiety coupled with that has leeched into any sort of cooking. I also lose patience really easily with trying to do multiple things at once in the kitchen - it mentally drains me more than writing an academic paper! Having this support allows me time to dedicate my energy into things which matter to me and use my energy more efficiently.
This links into the discussion at the end of the conference, where it was briefly discussed how we should be helping autistic people to use their 'special interests' or 'special skills' in a way that increases their quality of life. I don't think this is pushed enough and something that has long been neglected. Certainly without the help of my hidden army I could never put so much energy into projects and studies which I enjoy to such a high degree - I would have to decrease the amount of time I spend to allow headspace and energy for executive functioning. I know I am very lucky in this case and that not everyone is privy to such a hidden army. However I feel it is important to say what is 'going on behind the scenes' as appearances are deceptive.
I do worry what will happen when my hidden army is no longer there to support me, more on the first account than the second account as it has taken such a long time to build a rapport with my army. There is also finding when to approach people, how to ask for help (words, tone, how to be obvious) and your chosen 'target' understanding your request and being able to fulfil it. Sounds simple, actually quite complicated and can be a few best guesses and misses before you are able to be anywhere near a good success rate. This can be really frustrating if your mental health is off, you're stressed, you're anxious or you just seem to be on a different wave length that day - trust me, it does happen. This is especially frustrating when you do not understand what you have done and are not privy to this information. Add into this that not everyone is bound to make friends with each other and some people have an interesting definition of effectively supporting an autistic individual - you have a right cocktail. It's like trying to sieve for gold in sand when you're at Disney or Legoland!
What can you do? First of all, know how much time it can take for someone to speak up in this manner and how much anxiety and energy may be expended in the process. This is part of learning about autism. I'm not sure I can give any quick fixes as we are all so different, but what I can offer is the insight from the gatekeepers and showing what could be going on behind the scenes.