Does autism get worse?

Thanks @Sunflower - I sometimes feel the older I get the more I learn and the better my coping skills get. Unfortunately the world seems to get harder and I get more exhausted and tired of the pointlessness of all the srtress. I'll be so glad to reach retirement - I'll be on the poverty line but maybe I'll finally get some peace.

I agree that some comedies are just excruciating.  I am here as a parent and offically NT; but my child calls me BAP. 

Analytically, if the relationship is too parent/child rather than adult/adult although the people are both competent adults, then it is patronising.  As a female, i get put down by people with a lower IQ and imagine that you get the same treatment.  It causes me emotional blisters by always affecting the same place (and adrenalin can be exhausting).

Please don't think I am trying to empathise; I hope it is validation. That souds to be only funny if you can identify with the self-deluding idiot.

I hope you can avoid the idiots.

I solved all the above in me, by never watching tv (unless I'm at somebody's house), I don't listen to radio or modern music, I don't read newspapers or magazines or go on the internet for news stories or social media etc and I avoid people for the most part and I've never been happier :)  

I often have strong emotional responses to things I see on TV, especially to do with empathy for people labelled as outsiders for not understanding normal social rules. Far too much TV comedy seems to be based on the premise of laughing at people who are not aware that they are the subject of ridicule for being different.

Over Xmas there was a comedy program called 'Click & Collect' that I was forced to watch at my parents after my brother recommended it. Everyone else thought it was hilarious, but I didn't laugh once & found it excruciatingly cruel. Towards the end I made an excuse & left the room for a while as I just couldn't stand it. Typically, no-one else noticed that I was uncomfortable though, so much for the empathic skills of NTs.

In 'Click & Collect', a well meaning neighbour was completely oblivious to his tone deaf social awkwardness & was constanly being looked down upon by almost everyone else in the program. It was supposed to have a happy ending, but even that felt like uncomfortable sneering to me.

I can't watch 'Only Fools & Horses' for the same reason, especially the Xmas episode where he gets a posh girlfriend that many people claim is the funniest one. Del Boy thinks he is a well respected shrewd business man & is oblivious to the fact that most people think he is an idiot.

Even some episodes of 'Fawlty Towers' are extremely uncomfortable for me to watch. At least for me, Basil Fawlty seems to clearly have some form of mental illness that needs treatment before he has a stroke, a heart attack or probably both. Everyone else just seems to laugh while he slowly self destructs though. John Cleese also made a movie called Clockwise with a similarly excitable central character who has to cope with a series of disasters which make him late for an important event. I cant watch that movie either for similar reasons.

I quite like watching TV & movies, but have to be careful to avoid things that I know will be triggers. Real life triggers aren't so easily avoided though & my usual reaction in negative social situations is to become quite angry, followed by extreme depression when I get home & the adrenalin wears off.

Don't even get me started on dealing with poor customer service over the telephone though 

I'm not sure my autism has gotten any worse, if anything I'm better at covering it up.  But I'm no longer a youngling, so I don't recover as quickly as I used to and I'm less able able to shrug things off that I used to.  Also I find that certain things create very strong emotional responses in me (out of all proportion really) that I struggle to control/handle in a good manner.  Those particular triggers have built up over time due to frequent repeat occurrences.  Also, I think I've probably built up quite a lot of mental trauma over the years, so I suspect I'm constantly closer to the edge of depression than I used to be.

Maybe one of the things I should ask for help with this year is how to cope when these triggers occur without my resorting to my poor coping mechanisms.  I'm a terrible stress eater and I'd like to find a way to be rid of that if I can.

Yeah, that's how it was for me. I was diagnosed last October and at first I thought I had regressed or something and then I thought I had got worse. But I eventually realised that the traits seemed more obvious because I was focussed on them which is a good thing as it is helping me to work out how to get a balance in my life and avoid altogether any more burnouts. 

I wouldn’t say my autism has got worse, but it could appear so as I take down the masking and attempt to live more as me which also means taking better care of me and not putting myself in situations that I know will drain me. 

Ooh that's a really good way of putting it, thank you.

I'm only 6 months since diagnosis, and obviously it feels like it's much worse, but that's only coz I wasn't aware of what was going on before I was diagnosed. 

Unless it's very very obvious, it seems that most, if not all applications go to appeal, so if it does, don't worry, it doesn't mean anything. I got zero points from my assessment yet enhanced daily living and even 4 points on mobility at appeal. 

I won't know about the award for a few weeks, but we both left with the feeling we are going to end up in tribunal.

I don't think it gets worse but I think there are periods when it is harder to deal with. I see it more like a rollercoaster than something that gradually gets better or worse.

There are some parts of me that are massively improved. I still get upset, angry and frustrated easily but I can deal with this much better than as a child and don't just explode anymore.

Other things I find harder to deal with like social interaction. I was never good at this but as a child I wasn't aware quite how bad I was at it. Now I've failed so many times I just try to avoid people I don't know altogether.

My anxiety has certainly got worse as I've got older and I think this is a combination of more pressure from life (e.g.job to hold down and bills to pay) and more awareness of my difficulties.

I can deal much better with things when I don't feel stressed. If there is something on my mind other things tend to fall apart. So it is very up and down as to how well I cope.

Since I was only diagnosed last year in my fifties, I can only in retrospect analyse whether my autistic traits have improved or worsened over time, but at least for me the answer is both.

I am certainly less resilient of the the stress caused by other people's irrationality than I used to be, however I have become much better at reading & anticipating their behaviour, so can better avoid situations that in the past would have been very problematic.

I have come to the conclusion that dealing with other people in social situations is really just a problem in pattern matching. Many easily noticeable behavioural patterns seem common to most people, whilst others are unique to each individual & must be learned through careful observation. Once enough data is obtained though, it is usually possible to spot early warning signs of negative situations, sometimes before the other person is even aware of them. I don't even consciously look for signals, some constantly running process scans for possible signs of danger in the background & then raises an alarm with a short diagnostic report when it finds something.

The flip side is of course that I over analyse everything to the point of even experiencing mild dissociation, where I feel like I am externally observing & controlling my own behaviour. Also, since this system is derived from the hypervigilence I developed after years of bullying at school, it only seems to work for negative signals. I still find it hard to tell if I have handled a given situation well & especially whether people 'like me', as opposed to not actively disliking me.

So in some ways it is worse & in other ways better. I do feel like I am becoming increasingly cynical as I get older though, which isn't really a good thing.

That’s a good way of looking at it. Did you get awarded pip, by the way? 

I wouldn’t say my autism has got worse, but it could appear so as I take down the masking and attempt to live more as me which also means taking better care of me and not putting myself in situations that I know will drain me. 

Here are links to articles you might find interesting:

Autism fatigue livingautism.com/.../
Autism burnout www.theautisticadvocate.com/.../an-autistic-burnout.html
Autism regression autism.wikia.com/.../Autistic_regression

Sounds like they were doing what they're paid to do.  Find any reason at all not to grant you a PIP.

They probably get performance points for every award they don't make.

That's more money saved into the Treasury's coffers, so less pressure on them to go after the tax dodgers at the top of the pile.

I agree with you. 

The true extent of the difficulties we experience as a result of autism are often masked or camouflaged. Earlier in my career I could do really demanding jobs for a couple of years at a time then I would get physically ill, and/or experience high levels of stress and anxiety. Back then, not knowing I was autistic, I would move on to the next challenging role. A fresh start would usually re-energise me, at least for a while. The period of time I could push myself for reduced as I got older. I'm in my late fifties now and I am off work with stress currently, feeling really exhausted. At least the intense agitation I was experiencing has calmed down now - I really felt I was being 'driven to distraction' by massive change and uncertainty at work, combined with hostile management.

Autism fatigue and Burnout often result from pushing ourselves too hard for too long. There isn't that much published about this although it seems to be well known about and accepted in the actually autistic community. Kieran Rose gave a talk at a recent autism conference on the subject which I found very useful. I hope the video will be available soon, in the meantime here is a piece on masking from his website: http://www.theautisticadvocate.com/2018/07/masking-i-am-not-ok.html

The psychologist who diagnosed me also explained that stress intensifies sensory aspects of autism so that things become harder to tolerate. Again this makes autism seem 'worse'. As we get more confident in our autistic identity we are able to drop our masks - this too can make it seem as if we are becoming more autistic. Once we realise the negative effects of suppressing coping mechanisms like stimming it is harder to keep covering up.

We all change and evolve during our life course and while fundamental aspects of autism may remain unchanged the way it combines with hormonal, physical and psychosocial aspects as we age is bound to have an impact. It's ridiculous to suggest otherwise. Sounds to me like the PIP assessor is trying to deny the disability associated with autism and suggest that you just need to 'try harder'. Trying too hard for too long breaks us in the end, and it can take a very long time for us to mend enough to resume our 'normal' working lives, if we ever do.