What I wish you knew

Hello dearest readers,

So said title is quite self-explanatory really. What I wish you knew. I think as humans we throw around a lot of assumptions and we think we know a lot in comparison to what we actually know about people, irrelevant of our status, life experience, diagnoses (or lack of), possessions, etc. These all help us and guide us in our assumptions and inferences. Some information is hard to access, so an inference us our best guess and sometimes more ethical to consider what might be going on behind the scenes rather than base things on objectivity. However, it can also be dangerous in some cases to assume your own perspective and to imprint this upon someone else. Here I will reflect on a few things that maybe we all ought to consider:

My emotions are not your emotions
Just because we have the concepts of 'happy', 'sad', etc does not mean we all experience them in the same manner and with the variables equating to the same emotions. It also means when we experience something, say anxiety, that what I feel as anxious will be the same as you and that we will have the same thresholds and the same experience of a phenomenon as a whole. Think languages - as a linguist, I always remember there is no 'one for one' translation of anything and emotions are the same, even from person to person. Anxiety, as the example here, may mean something completely different for one person as to another. For someone who finds it hard to sometimes (or quite a bit of the time) to put into words how I am feeling and the impact it is having on me. This can mean anxiety can be bubbling for some time before I mention that I am struggling - by then I am struggling near breaking point quite a bit. To be told 'we all get anxious' just winds me up. I know we all get anxious, or we would not have a word for it! Often me asking for help when I am struggling will just come out as a statement of how I am feeling and how it is impacting me. What I do need then is help, not perspective. I can do perspective at other times, but not then. Thus my emotions are not yours: we are all more intrinsically unique in our experience than we often realise. Autism is part of the uniqueness: it's pretty pervasive so don't ignore it in terms of emotions and feelings. 

Being quiet means I have nothing to say
This really winds me up and I get this assumption from all sorts of people. I have to be honest, mostly when I was younger but not so much now. But as I've got older, my patience for dealing with this comment has plummeted rather drastically. I've also been very fortunate that as I have gone into new environments that the people I have met have either been more like me in terms of very work focused or having things in common we can talk about. When I am in 'work' mode, I can talk about 'work' but find it hard to switch onto other things. I am also a bit of a workaholic, mainly because I am very passionate about what I do. Also doing a Masters, you do live-eat-breathe what you study, even at a part time level, it is intense when juggling it with 2 jobs and running a project, further intensifying this. 
On the other hand, I do need time to make decisions and process information and because I take a bit of time, I have had the comment 'don't you ever make decisions' which I find equally infuriating. I often say I don't mind with friends as seriously I can't be doing with people staring at me as I try and figure out what filling I want in my jacket potato or what order I want to visit shops in today. Having a lot of other information going in will only slow down the process further. A bit like above where I mentioned I can find it hard to know how I'm feeling, in the same way, it can take me a bit of time to figure out preferences.
This also doesn't mean I don't feel anything - I've had this before too. Again, the mixture of needing the time to figure out a response and also the fact the majority of the time I feel something, sometimes very strongly (emotional empathy) but it might not come across (cognitive empathy) - I'm pretty useless for emotional support most of the time, but practical support is something I am much better at, as shown through the above. Don't assume ever someone has no empathy or can't feel. You're not in their head, you can only just what you see. Given the differences in strengths between emotional and cognitive empathy in autistic people, it is misleading to judge on appearances alone. 

There's what looks lazy which isn't
I'm going to take a different route here which is more personal to me. At home I am never on time and both my parents and sister can vouch for this. I remember when I was younger getting the comment 'if you were autistic, you wouldn't always be running late'. This being lateness is often taken as me being lazy and 'if I got up on time, you'd be on time'. Oh haha, however early I get up, I can still end up being late! It's not laziness, but rather no concept of time: some days I can whiz through and be really early. Other days I am stuck in bed feeling anxious about nothing to anything to everything or I cannot grasp how long things will take, even if I have done this multiple times before. This isn't laziness, rather a mixture of no concept of time, anxiety and executive function. Executive functioning is an odd thing that is described slightly different by each person who describes it, depending on their experience and field they work in, so I'll leave a nice simple definition here. Imagine you are at work and your boss has left no instructions and no one has any idea what to do and is flapping around. That is executive dysfunction or difficulties with executive functioning. If the manager were present and prioritising everything successfully and managing all the little things that need to be done - that is your executive functioning (EF). This including things like planning, organising and prioritising as a small selection. Other autistic bloggers have spoken about EF too, so they might be a good place to start if you'd like to know more. This isn't uncommon among autistic people - the difference with me is I can pull off being organised to an extent and looking like things are under control. Through this careful micromanagement and various timers, calendars and diaries I have "life" organised to a way that works for me. I haven't' always been like this - I was forever forgetting books at school and leaving stuff at home when I went away. I haven't grown out of it, rather found over compensating being over-organised works for me. 
I also add I am not angry about what my parents said about me being late and being autistic - this was many years ago (although at the time I was angry and knew this was the incorrect conclusion). It's a stereotype from the time I believe regarding anxiety and routine, but not taking EF into account. Little was written in books for lay people that weren't media hype 7-10 years ago, certainly not EF. We're all learning at home still to this day, myself included. EF is a tricky thing if it is new to you, as it can seem like a fabricated excuse for laziness to the outsider who knows little as you just cannot see what is going on up there. If you want to know more, Tony Attwood has written a brilliant section starting page 234 in The Complete Guide to Asperger's Syndrome (2006). Yes the book is about Asperger's but this phenomenon is autism wide, rather this book has a particularly good explanation. 

All autistic people know each other and get along well
We are likely to share experiences in some domains but given how vast and deep (and complicated!) autism is, can you really expect us all to be robots of each other! I am certainly not a droid, rather a very much thinking, feeling and alive human. No one person experiences life or being autistic the same. Due to this rich variety, there are bound to be people who we are likely to feel at one with than others. Much the same, the depth and variety of experiences of autism mean that, although many of us do have shared ideas as autistic people about what is right and wrong regarding autism and some other things too, it doesn't mean we will all 100% agree on everything and that it is a given that we will. Sometimes we disagree, sometimes peacefully and other times not so - because we are human and I am yet to meet any part of the human race, autistic or not, that have cracked the whole always getting along thing without some sort of issues. Furthermore, I do not know every single autistic person ever - there are groups and communities on line that a number of people use, but many may not have access to computers in some countries or not have access to such communities, or some may just wish not to join. I can't physically know every single autistic person, that would be pretty incredible if I did. Given that you can't spot us in the street visually (autism has no look, etc etc), you can't just assume. 

I like to make my own mind up
I don't like being told because I am X you should believe Y, or being policed in my beliefs and ideas. This defeats the concept of free will if I don't do the leg work myself. My moral compass is quite well tuned as well, so many things I will come to the same conclusion as you on. I value the gift of free speech I have, I am very fortunate that in the U.K. we do have the ability to speak our beliefs and thoughts without being censored and I like to take full advantage of forming my own opinions. I often feel there is a peer pressure in all social groups, acknowledged or not acknowledged. I think I notice this or feel this as I have pretty much always just 'done' my own thing. In sixth form, I was notorious group jumper and by the end I was just eating lunch on my own at home as I found it easier for a number of reasons (deaf as a post in the common room, felt lost, stressed, anxious) but I think being on the outside means you may experience things differently to those on the inside. My personality probably also has a part of this too, as I have always sought not to my own thing. One example is my friends at school went through a phase of shopping in New Look - for about a year, I refused to step foot into the shop. This can also be seen by others on occasions as pushing people away, and that is not the intention at all, rather that I like to make sure I don't lose myself in groups. I've never been a herd follower, it's nothing personal, I'm just stubborn! 



Current popular reads

Spirituality: we need to talk about this

Why I don't and can't know everything about autism

Four reasons why we are not all "a little autistic"

Fortitude or resilience?

Respect versus ignorance

Equally treasured: story of the autistic loving God

Writing as tonic