Autism diagnosis was a big relief to me. What an epiphany! At last I knew why I've been bewildered by the world around me throughout my whole life. I realised that the way I think and react is not the way that everyone does. All my life I've been trying to fit in with what is expected, and subconsciously managed to mask in order to do so. I realise now that not everyone does this. I also realise now how difficult and exhausting this has been!
Being autistic is not a disability. Sadly, some people suffer greatly and never manage to interact with the neurotypical world. But it's often a really positive thing and we have so many good characteristics! It grieves me that autistic people and their skills and gifts are often dismissed and overlooked because they are so misunderstood by the majority. It's not just that I may not understand you, but equally neurotypical people often don't understand me. Yet because my way of thinking/behaving is in the minority, it is usually seen solely as my problem rather than it being mutually equal that we don't understand each other.
Nowadays, autistic people are more sought after in many professions. This is because they tend to be truthful, honest, reliable, loyal, hardworking, and often above average intelligence. That's not to say that neurotypical people aren't, but autistic people more consistently so.
It's interesting that friends with experience in the field thought I was autistic before I did – and assumed I already knew!
Autism isn't quite like the spectrum that it's often called. People aren't 'more' or 'less' autistic. It's more like spectra within a wheel rather like this picture. Different people will experience different extents of different traits. Often someone's traits will be made more difficult to manage by the way they are treated, or the situation they find themselves in. It's essential that autistic children and adults are given the understanding and help they need to navigate a way of life developed by neurotypical people.
I'm writing this because it would be wonderful if it helps even one person understand better so that someone avoids some of the trauma I've been through.
Social interactions
Every. Single. Social. Interaction. Is stressful for me.
The level of stress depends on who I'm interacting with, but I am anxious before meeting even good friends/relatives, and even going to my regular activities. Will I be on time? What are they expecting of me? Will I say the right things? Will I act or react in the way I'm apparently meant to? Will I fit in and be accepted? Do I look ok? Am I wearing the right clothes? Will I understand what they mean when they talk to me? Will I be able to answer appropriately? Will I be understood? Who will be there? Will anything unexpected happen? Will I be able to handle any emotions triggered?
Having had to subconsciously learn (I didn't know it came more naturally to others) social conventions, I constantly worry that I'm not doing it right. This is exhausting.
Growing up and at school everything in my head became rule based, and I did what I thought I was meant to do, learnt by copying. Usually I worked it out before it was a problem but sometimes I got it wrong, and was completely bewildered and didn't understand what I was being told off for. This overwhelmed me emotionally and then I was in trouble again for not coping emotionally (melting down) with the injustice or inhumanity of the situation. This has all led to a lack of self confidence and self worth.
Honesty
I am scrupulously honest. You'd know absolutely if I were to lie to you. It is to the point that if I say something that is true, but later I think you've understood something different from what I've said, I will come back to you to clarify it. I will also always come back to you if I find what I've said isn't true, though I'm beginning to learn that a lot of people just aren't that bothered whether something is true or not.
It was a revelation to be told that everyone says things that aren't true sometimes. It was also a shock to be told recently that you don't always have to say the truth. I'm still trying to work out when I'm supposed to say what's true and when I'm not!
The autistic world is a much more honest one.
Auditory processing & communication
a) I take time to process what people say to me. So answering them is difficult. It may be that hours or even days later what has been said sinks in. I'll then have questions, but people are often impatient when I come back to them later to clarify things, or bring up the same issue again.
b) I say nothing at all, or everything. You either get nothing out of me, or every single thing that's on my mind. I have difficulty regulating this.
c) Sometimes verbalising at all is extremely stressful. Yet many times I've been forced to speak to people. I often find communicating my points and questions by email much easier. It takes me days sometimes to write such emails, but by the end of it I will have explained/asked exactly what I needed to. This is impossible for me in a conversation because of what I said about processing information.
Unfortunately some people insist on purely verbal communication. They assume that it's always best to talk and don't realise how incredibly difficult that is for some people. They may also refuse to respond to other forms of communication, because they don't understand this.
This is basically denying or ignoring my thoughts and dismissing my communication difficulties. It can be quite damaging and hurtful, not to say selfish and unkind, to insist on a certain way of communication that others can't cope with and dismiss their preferred communication method. Especially when they have agonised for hours over how to communicate what is important to them!
d) If you tell me something, I will believe you and take what you say literally. Yes that means I'm gullible. But once again it's a more honest way to live, and is positive as it means I always take you seriously.
e) Sometimes I've been completely bewildered by being accused of being rude. That is never my intention, ever. I say things as they are, and as I understand them, and struggle sometimes to shroud it in all the social niceties. This is particularly hard as a woman in often misogynistic environments where assertiveness and outspokenness are seen as undesirable or aggressive in a way that they wouldn't be if men said the same things.
f) I can't hear song lyrics. So I actually don't know the names or words to many songs. I recognise loads of music/songs when I hear them, but I couldn't tell you what they are called or what the band is.
Sensory issues
I have always hated wearing anything with wool in it. I can't bear it next to my skin. I've also always been very ticklish and can't tolerate light touch sensation.
I jump at noises – not necessarily loud noises, but any sudden noise. This got worse since suffering from PTSD symptoms after being deeply hurt by longstanding friends.
I hear things that nobody else hears. (Strange as I'm deafer than I used to be!)
Stimming
In relation to the above, this wasn't an obvious issue until the PTSD symptoms set in. Now I may twitch or shake if a situation is particularly stressful or I think about past interactions that caused stress. This is semi-involuntary, in that if it starts I can usually minimise it, though it sometimes helps me cope with the emotional overload.
Perfectionism
In some ways this made me particularly good at my job. People's lives were at stake. Various of my colleagues said that they would want me to be the one to check their treatment plan if ever they needed radiotherapy. However, it meant that I would agonise for too long about whether it was the best possible plan, and sometimes found it difficult to know when something that wasn't perfect (there's no such thing as a perfect plan, or anything perfect in this world) was acceptable. So I could also be pretty slow at my job.
I wish I'd known this about myself before I retired! It would have helped me no end in being more pragmatic at work.
Face blindness
I have trouble remembering people's faces and won't necessarily recognise them until I've met them quite a few times. I've often had embarrassing situations where I've seen somebody 'out of context' and didn't know who they were.
Eye contact
Not long after we were married, Paul mentioned that he'd noticed I didn't make eye contact with people when talking to them. Ever since then I've made a deliberate effort to look at people during conversations. This is exhausting as it is a conscious effort, I find it uncomfortable, and sometimes I just can't do it.
Not letting things go
I can't let things go. I have to stand up for truth, justice, and compassion. I have done this many times at great expense to myself, and it was doing this very thing that led to PTSD. I don't regret doing it and will continue to do it, as I believe it's the right thing to do. But it does take it's toll in this dishonest world.
I easily get fixated on details rather than always seeing the big picture.
Reliability and loyalty
Related to not letting things go, I don't give up on things easily. My health has made me do it more often recently, but at least that has given me an acceptable reason/excuse which means I don't feel quite so dreadful about it!
I try to do whatever I can to help other people, and fit in with them, do whatever I'm asked to do, and put myself out for them. I think I thought this is what you're meant to do, so I've always done it, and that's fine.
If I say I'm going to do something, I will if it's within my power to do so. I can't bear letting people down, and I hate the fact that I've had to sometimes because of my health.
I'll always defend you if others unfairly criticise you, even if I get hurt because of it, and even if you've previously failed to defend me or give me the benefit of any doubt.
Memory
My long term memory, and particularly my memory of exactly what people have said/done to me when it's been something hurtful, is profound. I struggle recalling things that happened a few minutes ago, especially with chemo brain, but I remember events that took place years ago with vivid detail.
Emotional overwhelm
Sometimes throughout my life I've become emotionally overwhelmed, and have what might be described as a meltdown. This is literally when I can't cope with emotions arising from how I'm being treated at the time. People who've experienced this have seen it purely as my problem and me consciously behaving badly, despite that not being the case and it being more about how and what they are doing to me.
As I've said, honesty is of utmost importance to me. So emotional overwhelm is most often triggered when my honesty and integrity are disputed. This might be having my motives unfairly questioned, or being misunderstood, or not being believed.
Being an autistic woman
It's only recently that it has been appreciated how many women are autistic, as it's been thought of as a largely male disorder. But that's because autistic traits manifest themselves differently in men and women. Women also have a strong natural desire to fit in, and from years of oppression have learnt to do what is expected of them, and so autistic women have become incredibly good at masking.
Having only discovered in the past few years that I was autistic, I'm just beginning to make sense of my whole life. I wish I'd known much earlier as it would have helped so much with navigating it. I also sometimes wish I wasn't autistic as it is very hard work continually trying to fit in with what other people expect.
However, the advantages are enormous, if only neurotypical people realised!
