Most things I've heard and read speak of autism as a set thing - with certain innate characteristics, bio-neurological dispositions, and behavioural traits etc, whereby they're almost spoken about as a definite and concrete phenomenon.
However, my personal experience of autism is that it feels much more plastic and organic - as certain traits have seemed to change over time, and others have seemingly gotten worse with age. For example: as I'm getting older, I find my thinking is notably much more rigid and inflexible than it used to be. So, should I be actively expecting my autistic characteristics to change with age? Or, are the underlying mechanisms still the same, just my relationship (perception?) to it that's changing over time?
Does anyone else have experience of autism being more 'fluid' and organic than is often communicated?
Does anyone know of any books or articles that explore this aspect of autism (e.g. longitudinal / lifespan studies etc)?
I've found the opposite to be true in my case.
As I get older I am getting more flexible and catching up in social skills I never learnt when I was younger.
And by studying autistic traits and behaviour. I am proactively doing the opposite to make myself appear NT.
Good on you! It seems you've got the right mindset - the perspective of a social scientist (curious about the research and making an active point to do the practical) !
I wonder what I'm doing wrong?
Are you actually getting worse, or just getting tired of masking?
You raise a good point. I am admittedly growing tired of masking (passing).
But, I'm also tired of trying. I'm getting to an age whereby I am watching peers far surpass me in terms of life goals. Hell, I'm even watching younger kids having greater life skills and achievements. And, I just feel like I've had to put so much hard work into getting nowhere, yet my NT peers comparatively seem to have less struggle with far greater reward.
So a large part of my problem is motivation. I'm becoming increasingly vulnerable and demotivated with age, and I think that's possibly (negatively) changing my relationship / perception to autism.
I am tired of masking. I am probably not even tired of it just no longer motivated to do it anymore. I am 43. I just can't be bothered. I've accepted myself and there is this naughty bit of me that quite enjoys when people are shocked and I don't care.
Interesting you should bring this up because it's something I've been considering a lot as I work my way forwards through my life history - from the moment I first felt 'different' to the moment I finally got my diagnosis. In some ways, I feel a little easier now around other people. But I'm pretty sure that's because of my diagnosis, and because I'm open about it to everyone. It's not that I'm using it as an excuse, really. But I'm setting up a level of expectation with other people I interact with - mainly my colleagues at work, who are trained carers in autism support. I've had comments from people at work recently, saying that my going to work there has been 'a breath of fresh air' because I seemed so switched on with our service users, and it's having a positive impact. That's tremendously encouraging for me. It's actually nice to work in an environment where I feel both accepted for who I am and appreciated. I suppose, then, what I'm saying is that I no longer need to wear a mask. So I feel more comfortable in my own skin. More so than I've felt for most of my life, anyway.
In other ways, though, things have gotten worse. My ability to focus has deteriorated (I struggle with reading even a short story now, and haven't read a long book for a few years). I find it hard to learn new things. These may be symptoms of just getting older, though. But my thinking has become more rigid, too. My interests are much narrower, and I get more upset if I'm disturbed or distracted from them. I live pretty much as a hermit outside of work, and rarely answer the phone or the doorbell. They rarely ring, anyway. I only go out if I have to - to exercise or get shopping. I'm much more reluctant to leave my comfort zone on any pretext at all.
I wondered for a while if my diagnosis had actually made me behave more autistically: whether the knowledge of the condition that I've accrued over the past three years had, subliminally, altered my behaviour in accordance - just as anyone else who gets told they have a condition might start to experience symptoms that aren't really there. I now think that's not the case at all. It's just, again, that I'm not hiding things as I once was.
I don't think autism per se gets worse with age. I think it changes in accordance with our experiences, maturity, knowledge, etc. Temple Grandin claims (though I don't really think it stands up to close scrutiny!) that her autistic behaviours hardly manifest at all now, because she's adapted so well over the years. We learn, we adapt, we 'evolve' - as all humans, and other animals, do.
I found something in You Tube that looked at older people, 50's, 70's, with autism. I posted it on another thread somewhere.
The trouble is, originally all the books only explored it as a childhood condition.
The AQ test only asks questions related to the present tense and I did not know how to answer some questions because if this. The ones about being fixated on numbers, car numbers and dates....well I don't now, but I certainly did, massively, as a child!! Letters of the alphabet too. One of my earlier memories was of rubbing out the letter 'h' in books because I hated the sound of the letter aitch!
One thing that was hard to deal with was the high expectations set by family and being made to feel that I was a disappointment. The lack of recognition for my art, in general,because my degree was in literature, not art, has been hard to bear. Most artists have to deal with that one, however. I did rebel a great deal against all these impossible expectations inside those to conform to the norms of leafy suburbia and then I did get caught up in two major recessions in the UK before leaving, not wishing to become Workfare fodder. But I did get to encounter a more interesting world than the one caught up in more conventional norms and standards of achievement, which often seems to constitute its own form of slavery to me. Pod people.
One thing and I don't know if it is s spectrum issue, is that I do find it embarrassing when well-meaning colleagues use their English with me, assuming my own knowledge of the local language is not good enough. It has always made me feel very exposed. Other people have complained about that too though. The English language gave me a living but at the same time it meant my own linguistic skills have got pushed into the background.
I don't think I have got more rigid with age, but dealing with the stress of commuting and paperwork, that is still not always that easy. I would not want to view myself as disabled in any way now though.
I think I read somewhere that traits get more pronounced as you age - your phrase "more rigid and inflexible" sparked off my recollection of that.
But, it can't be as simple as that, because to a degree you have control over your behaviours and how you think about things. One of the things that sets humans apart from other animals is the ability to learn, and to integrate new thought patterns and behaviours into your thinking so that you can adapt to improve your situation.
Before I went on a training course about Negotiation, I was terrible at asking someone for what I wanted. Would you imagine someone who has little-to-no awareness of body language and what other people are thinking and feeling in any given moment would be good at the fluidity of negotiation?
Now, after the training, I can do it easily, because I can adopt some of the mindsets and traits required to achieve this: it's learnt. And this influences my thinking, because they don't say "say these words" on the training, they dissect how 'negotiation' works so that you can understand it, then they give you some tools (mindsets and ways of thinking) so you can use it effectively. If I compare myself from 10 years ago when in certain situations, I would come out significantly better now than then.
I'm not talking about masking here, I'm talking about learning new behaviours and training yourself to think in different ways. But also, I still feel like me, my modes of thinking are still the way that I think, I just feel a bit 'upgraded'.
My Negotiation example is more like a "way around the obstacle" of how to do it, because it's learnt and not naturally-occurring. Maybe getting around things to get to the same conclusion is possible, but inside you still won't "understand" people in the same way that they seem to understand each other. And you might have more or less tolerance of things as you age, which might present through your traits becoming more pronounced.
I think as we get older we will still have the same internal struggles - I don't feel that any amount of training is going to get me to process body language subconsciously like NT's do. But, to refer to your "will my perception of it change" part of the question, the way I feel about it might have changed. Maybe I once cared about how I presented myself to people, and now I don't. Fundamentally, your subconscious brain works in a way that is specific and unique to you, and the autistic bits will always be there. You might be able to learn behaviours to counter your instincts, but your initial subconscious responses will be the same because that's how your underlying brain works.
Negotiating, or at least the language of it, is something I have often taught. A little of it rubbed off on me, which is good.