'Why didn't you tell me?'
This question popped into my head whilst cooking pasta for my lunch today. I guess I had ben thinking about making pasta from scratch, then associated that I had made it once with two friends whilst in sixth form. My memory often works by association, a bit like the game where you think of a word, for example: cosy socks - the next thing I think of won't necessarily be cosy socks or cosy socks related, but I just might have worn cosy socks that day. Anyway through some associations, the above question came to my mind: why didn't you tell me? Obviously in an autism/Asperger's sense, why didn't you tell me you needed help? Why didn't you tell me you were suffering in that situation? Why didn't you tell me about your diagnosis? I could go on. Knowing that most people are caring and want to 'improve' situations and not purposefully go around hurting people, these questions may have crossed some individual's minds potentially when reading this blog, or other literature written by those on the spectrum, or in face to face situations where things may have cropped up. Here I will list my thoughts. They may not all be answers or excuses, but they will endeavour to explain some things that may be considered odd or curious.
Why didn't you tell me you are autistic/have autism/enter suitable variant here?
I never used to like telling people as I thought they would judge me. I find sometimes that some individuals tar all who many come from a similar cohort with the same brush. Certainly when I was at school and during my first degree, there just wasn't information out there about women and autism. I wanted to be me, not what some psychologist had observed about autism and men.
There was also very little information out on Asperger's syndrome and people who are very 'high-functioning' in the public eye. I didn't feel part of the autism that was disabling and was only seen in certain environments. I felt stuck and didn't think I belonged anywhere. I wasn't 'disabled enough' for one group, yet wasn't quite right for the other. I also had very little awareness on some of the things I used to struggle with, or if I knew it was a problem I couldn't put it into words (I'll go into this more in the next question) . There were things I did know like 'I don't like crowds' but not exactly what this did to my body and what my threshold was.
I also did not like being labelled when I was younger. I still prefer people to use my name (it is a novel thing, having a name, especially when it's doubly foreign like both of mine!) and didn't see a diagnosis as a passport to assistance and the opening of opportunities. I always saw autism in a negative light and did not want to be associated with it, as I never got any help at school and never really needed to talk about it, so how was it relevant to me? Obviously I know now that I cannot go squeezing myself into a smaller circle shaped mould when I am a square! Doing that damaged my mental and emotional health and exhausted me. I am now more open as I owe it to myself that I give myself the allowances I deserve as self-respect. I hadn't figured that out as a teenager and very young adult.
Why didn't you tell me you found that difficult/were suffering/etc?
In short - I might not have known! As I briefly mentioned I did not have a great awareness of myself (and this is not uncommon for those on the spectrum). This includes, for me at least, spatial awareness and awareness of when I am uncomfortable. This may include being too hot or too cold. Other times I am aware there is something out of kilt and may know what it is, but find it really hard to put the correct words to what I am feeling or to what I would like to do.
It does also take me a ridiculously long time to become comfortable around people (you are looking at years here, months if you are lucky), due to the social anxiety that can raise its ugly head. Sometimes I really want to say something, but cannot find an appropriate time to say it in my eyes or I find the words but then put so much pressure on myself to say something that I then forget what I am going to say. Sometimes I got embarrassed that the thing I may be struggling with is something everyone else seems to be OK in terms of adjusting to or doing which seems so simple or age appropriate. Sometimes I also wanted to make myself able - I got frustrated with the fact I did struggle so put silly amounts of pressure on myself to achieve and do. Anyone who knows me well knows that in an academic sense I am a chronic overachiever and perfectionist. I want to be on top of my game and doing the best I can at any given moment. I guess this also carries across into other parts of my life too, for example not letting people down. I didn't like to be seem as unable. I wasn't at a point where I could accept help, in part due to the fact that as I explained in the above point, that I didn't see myself as an individual with a diagnosis of Asperger's. But then when I needed help and things may have gone beyond breaking point, I had been going along with this facade for so long, that others may have found it hard to know when I really needed help, as it seemingly came out of nowhere.
I, along with many others on the spectrum, internalise our thoughts and feelings. This will link the the question below. We may not be as good at outwardly showing things and very good at bottling things up. This in part links to the self-awareness issue. I sometimes thought it was obvious how I was feeling to others. But it isn't always. I have learnt to describe in very simple terms when I feel changes, but it has also needed others to listen when I speak and help me discuss the next steps to take.
Why didn't you tell me that (piece of information of your choice) - why were you withholding information from me?
Again, like I said in the above question - I often didn't realise I was doing this. I have found I think everyone can read my mind better than I think they can, hence why I feel like an alien when I have been told 'I don't get you' or 'you're boring' in the past. It leaves me in a position where I am not quite sure what to do - I mean, I can't just magic myself so that I am not me. It feels a bit like asking a fish to climb a tree inland... uh, no that won' be happening any time soon. I often felt confused that I was not readable and as if I was doing something wrong. I didn't know how to correct myself. As I have grown older, I have realised that those comments were unhelpful in the first degree, however unintentional they were, as I have remembered them and challenged my identity with them.
Another reason sometimes I do not say things, and I have only realised this very recently, is that I am finding it very hard to sequence the list of information and express it verbally, or I do not know which words to use for a situation that feels very complex and daunting to express. Sequences of what I am going to do today, for example, is one daunting huge blob that however I try and cut it up, it still makes no sense. Sometimes I really want to tell people things, but I have ruminated and repeated the situation so often in my head that I then question the words and order and get jumbled. I do find very long sequences difficult, especially when they are 'out of routine' or 'outside of doing things automatically'. I feel like there is a sieve and grains of sand are falling through the sieve; as soon as I have grasped one thing, another thing falls through. I'll get up to do something and have completely forgotten what I am doing or not have the capacity to go answer the phone and take my plate downstairs at the same time - I'd need two separate trips. It can be a bit like this too with communicating - I am so focused on one aspect that another goes out the pan. Sometimes the sensory environment, like noise or smells, might also disrupt a routine.
I apologise to anyone who has thought I have withheld information from or lied to in this manner. I wish I could show you these thought processes so I do not feel so alien and that it can make sense to all parties. I have always had the image of a bridge connecting groups of people together with effort on both sides to help all. I may need some tools to help with my effort, but I promise I am trying.