working on change in core features of autism - is it worth the effort?

Change is also the only constant in life, but I agree changing to suit others is exhausting.

To change is exhausting. We must be allowed and confident to be our true selves. 

I’ve been looking recently at history and the various aspects of the Victorian Age, especially concerning the life of Queen Victoria herself - I’ve seen in videos somewhere that they had a type of laughter called “phyoo-rhea” (I’m not sure of the correct spelling) and that this was supposed to have “went up” - it leads me to wonder if Queen Victoria and/or Prince Albert were autistic given various aspects of her life and her childhood and even her later life, her behaviour after Prince Albert’s passing and her extended period of mourning for him 

Thanks for the info. I tried googling it and couldn't find the specific link. Which website is theirs?

I just want to thank you for starting this thread and to you others for all your  insightful comments. I now understand why being in the presence (virtual and face to face) of other autistic poeple is so enjoyable and stress free. A chance for us to be at ease. It will take time for us to be as relaxed with the allistic majority. Until then we are forced to fit in " act allistic". Something we can do as long as it is not for too long and as well as we can take breaks. Personally  I can cope with this as long as I can maintain my self esteem and not be persuaded that there is anything wrong with me. To just be proud of what I am.

I Sperg said:

I've also leanred that "disillusionment", is geenrally held to be a bad thing

Yes, many people struggle to understand that those differences were always there and that they do not suddenly appear after this moment of disillusionment. I feel like I’ve been getting better after researching about autism even though I’m not diagnosed or anything. Thank you so much for this insight, especially since I still got a long way to go! It’s really nice to meet so many people with so much more experience on here.

thanks VLD good tips - especially the pee break one! :-)

My thoughts exactly. 

I have come to the conclusion that, just because an opinion is held by a majority of poeple, it does not mean they are right. Too often I have been told there is something "wrong" with me just because I am not like them. As time has gone on I have been more confident in myself and can keep my own options. That does not mean I have to force them on others. That would be hypocritical. I just don't feel put down by others whobtalk nonsense.

I have found that the best therapy is to be in zoom groups with others like me as we seem to be the only ones who really understand us. It gives me a break from thd stress of trying to fit in and conform. (I don't like the term masking.) Best one so far has been thd Autistic Elders Zoom Group which you can Google. It may look as ic it has folded but they are just sorting out dates fir next year.

I'm also in my 60s and about 2 years in.

I think we have to be ourselves in thd company of those who understand us and especially others who are like us. Perhaps try to spend more time in such spaces. At other times we do need to fit in, hever exhausting this may be. If we do we need to be aware of the pressure we put on ourselves and make sure we get breaks. At least at our age we can get away with frequent pee breaks!

I Sperg  been meaning to ask please.... did reading " games people play" help you in any way?

I too have the added complexity of childhood trauma - in my case diagnosed ASD type1 and in previous breakdowns, which are most likely down to autism, have dredged thro' the trauma reactions to explain what was taking place.

 If I may comment further for how I currently perceive the "who am I" issue which troubles me too to see what your reaction to it is?  (stupid thing to write as I plan to anyway...  stop reading now or tell me none of my business if you like :-)    ) 

I figure that with me having a type 1 diagnosis and your type 2 diagnosis I may be completely unaware of differences between you and me that may mean it is difficult for you and me to communicate ideas between one another.   Sorry if I get things wrong like that.

Anyway, worth a go perhaps? :-)

I figure who I and anyone else is to be a sum of individual behaviour, feelings and thoughts and also in some way the titles and roles that I have.  Titles and roles are important though maybe less important than how I behave, feel and think - as if I want a particular job or relationship etc it is how I think and behave that will increase or decrease the chance of getting them maybe.

There are big chunks of these things about that I maybe don't like - often because they are unsatisfactory for the needs and goals that I have.  This includes how I need to feel.  There are also big chunks that I am often less aware of that I could and maybe should like more.  Maybe that is linked to the sense of wanting to meet the person you and I "were supposed to be"?

That sense of roller skating uphill might get easier if first considering and getting used to standing still on the roller skates to start with.  Noticing who the person one is now is like standing still on the skates perhaps?  I Sperg  writes of "disillusionment" - a sense of removing the veils to seeing who the me is... as the sum of what I think, feel and act in particular circumstances.  Past, present and future.

Noticing how one feels, thinks and behaves in particular circumstances past and present potentially opens up the possibility of feeling, thinking and behaving differently by doing it differently next time and maybe getting "better" at it by using a trick or a strategy that is learnable.

Personally this experience to me has meant that just standing on the roller skates has been tricky.... takes a while to find balance and the risk of falling and hurting oneself is ever present - some of the things we notice and encounter  can damage confidence and the mess with the relaxed poise that helps so much when roller skating - so practicing in a safe place with support as necessary is important. 

I agree that getting the right trained support would be best.  In the context of available NHS services then, well perhaps the less I say about that the better at present...

So we're left with this sort of forum and exchange, other written or on-line resources, friends and relatives and ultimately ourselves as being the means of getting a hang on living our lives in a more happy way.  This is fundamentally more difficult for an ASD brain than for neurotypicals it seems.  Doesn't mean it's impossible.  Even neurotypicals have to learn to roller skate in the first place...  I've been listening to podcast from "adults with autism" recently starting from the beginning.  Whether the time or content was right or maybe both there are some tricks that one can learn out there to help with rollerskating the ASD way it seems.  

I know that getting back up can be hard after falling off the skates a few times - there are injuries that are caused that can take time to heal and also maybe some that will never heal that will need to be accommodated along the way.  I also know that some people would rather not want to roller skate and choose not to.

On the other hand rollerskating is possibly a lot of fun.  Although hard work going up hill think of the buzz the downhill bits will be and how much momentum will help getting over the bumps along the way!

Stay safe.

All the best :-)

thanks - yes if I understand this - knowing yourself helps "run you" better to sum it up perhaps :-) all the best

This is definitely one of the hardest topics that I think a lot of neurodivergent people face, especially late diagnosed (like myself).

I've been wracking my brain trying to find neurodivergent-affirming therapy (NAT) service that doesn't cost a fortune and isn't a scam (because god forbid the NHS would provide suitable accessible therapy options for neurodivergent individuals, even though it's a requirement under the Equality Act 2010!).

I was late diagnosed with ASD level 2 at the age of 34, after decades of my symptoms being put down to trauma, depression, anxiety, etc (technically I do have these, but they are symptoms of a much broader picture, not the root cause).

I grew up in an environment of severe childhood trauma, and my emotions, needs, desires, etc were supressed for 'survival', which definitely blunted my growth as a person, so I barely have a concept of self or identity.

When I look in the mirror, I don't really feel much; I recognise the face as one I've associated with 'mine', but it's a very odd and layered experience.

I cannot separate pain, neurodivergence and trauma, they are merged and blurred, and I believe my concept of self and identity is somewhere under this, but getting to it is like trying to roller-skate up hill.

I desperately want to meet the person I was supposed to be, and develop her into a happy neurodivergent adult, but without therapy from a seriously well informed person, I really don't see it happening...

Emmalephant said:

Since I’m still quite young, things like getting invited to a party are a big piece of social life. I barely do get invited and whenever there’s a party basically everyone around me goes to, I feel utterly alone and left out. But then again; why? I don’t like those people too much and honestly? Parties are always stressful, loud and full of opportunities to embarrass oneself. My mind is currently trying to wrap itself around the thought that it might not be too bad to not get invited to something I wouldn’t really want to attend anyway. 
There certainly are situations where you’re actually gonna miss out on stuff you’d like, but how often is this actually the case and how often do you just feel obliged to want something you wouldn’t actually enjoy? 

It took me a LOT of years to learn that piece of wisdom.

We are TRAINED from multiple directions when we are young and given expectations of life, many of which (for me) have turned out to be completely false.

I've also leanred that "disillusionment", is geenrally held to be a bad thing, because the Knowledge that comes with disillusionment cuts you off from the majority. A classical example for me was being disillusioned of the idea that I was "just the same as everybody else".

Post diagnosis, I now realsie that I am a member of a minority that deviates from the majority, fundamentally and irrepairably (even if I wanted to change) in the way that I see the world and solve problems. The things that put such big smiles on the faces of the NT's simply don't touch me like they do them.. I'll never react the same as them in most situations unless I learn how to fake it. Friendships are indeed statistally speaking harder to form, because fewer peoeple are compatible with me or find enough common ground to form a friendship. The list is massive... 

The upside of "disillusionment" is of course, that it makes it easier to know God..There's some rubbish I can firmly reject, knowing that whilst the rest can swim in it happily it is toxic to me. And there's some things I have to accept about myself that are toxic to most NT's (or right minded people as they style themselves.)

As a "high functioning" Autist I hear or read the words to the song "Mongolod" by DEVO, and think, that sounds like my life before diagnosis! 

When I am attending get-together with trusted friends, I make sure to give myself some alone-time beforehand and at the party I’m sometimes wearing noise-filtering or noise-cancelling earbuds. I’ve got a barely noticeable pair so I won’t feel as weird when wearing them. I also make sure to be as independent as possible when comes to getting there and back, so I can avoid the stress of having to rely on someone else and also don’t end up having to sleep over since sleepovers are quite difficult for me.

So it’s really not about working on myself (although self-reflecting is always important) but more about trying to work on how I deal with my environment. This seems to work for me though.

Emmalephant said:

That’s exactly why I despise the term “woke”. It originated in the civil rights movement and meant as much as being “politically aware and awake”. It was a well-meant advice for those discriminated against to look out for the political situation. 
Nowadays it is used by the more conservative fraction to polarise and the liberal fractions often use it as a knockout-argument. It now serves more as a conversation-stopper than -starter and that’s just sad.

Brilliant post.

Hi Emmalephant - it seems to me that your answer puts your current analysis as being that you are working on understanding and currently favour being your authentic autistic self - I concur: there are a couple of xmas parties that I am not attending this year for the same reasons that you outline, :-)

Phased said:

Change by adapting  Work hard and smart at learning to understand it – perhaps get the brain and behaviour to  both consciously or subconsciously do things to “fit in” to more neurotypical society and life.

There is also the bit in my question about whether it is worth working on learning strategies to potentially find ways of making attendance at such parties more fun/successful/doable ....  since I suspect this will be hard work I am interested in finding out if others have been successful at it - to get an idea if it's worth the effort :-)

Being a 54 years old Irish gay man in a working class area of the U.K. 23 years, from an Irish Catholic background and 30 years in supermarket retailing, I quite agree - these people destroyed the gay community from within and resulted in my facing huge prejudice and discrimination from within the gay community up to 18 years ago since my teens in the 80’s - my Rural Irish Catholic, working class, only child and non-university background was sufficient excuse to discriminate against me from within the relative safety of the gay community and older gay men at the time were totally opposed to the changes that they were making at that time