Post diagnosis

I think it's part of the process but I'm tired of thinking about it. I just see it as the way my thoughts go. If I wasn't stuck on this, I'd be stuck on something else. Each notion tiring me out but being unable to stop. I can't see it fizzling out completely because I can't really escape it!

I always said a diagnosis wouldn't stop me doing anything I used to do. That was 2 years ago. Now with some time off work and then reduced hours due to physical illness and time to digest the diagnosis , I feel like I'm closing down. I'm a bit reluctant to change anything or do anything to move forward in my life. Altho im more aware of the impact and am able to manage things better, I'm scared I'll end up in the burnt out positions I've been in before. So I'm overly cautious and overthinking absolutely everything.  I don't know how to move forward. 

You are welcome.  My empathy gland swells when I read posts like yours above.  I know what you speak of.....and defo never need a response...again, I super-get-it  !

Without rambling a long reply which I’d find difficult right now as it’s been a long day, I just want to say I appreciate what you have said, thank you. 

Thank you for this post and I'm just going to pick out a couple of points that really resonated with me and are very positive.

Carl Au said:

One of the most common questions I come across is which but of me is me and what is my autism. The truth is that they are one and  the same thing.You are you because you are autistic, if you could take your autism away you would not be you. Wish you were not autistic is like wishing yourself away.

Carl Au said:

A diagnosis is a gift, it is a privilege these days with waiting lists being what they are. You have been given an opportunity see start again and put a full stop on everything that went on before. An opportunity to be who you really are, to be kinder to yourself, to forgive yourself and your younger you and to look.at your life through a new lens and do what you need to do.to be happy on your terms.and without guilt.

It's good to have a professional in autism on the forum.

I hope you post again as your insight is really helpful (to me at least, hopefully to others, especially the OP).

Zoe - you never have to apologise for posting on your very own thread....our thoughts often resonate in ways that we cannot anticipate but that turn out to be really helpful and reassuring for other people......which feeds nicely into what I am going to say to you (for what that's worth!)

In this instance, I can tell you that the middle chunk of your writing above resonates VERY strongly with my life experience.  I started to feel a lot better about myself and the world when I started to judge both of those things by my own metrics, rather than by the metrics that are drummed into us by the NT world.

For me, Zoe, it is the little things that REALLY count.  Not how many people will turn up at your funeral.  Not why you can get back your 'old self' and your 'old friends.'  The worth in your life is probably as weird and wonderful as your own brain....it will be different - but equally as valuable.  Your contribution to this world will similarly be different - but again equally as valuable.

The little shared and silent moments of connection I find with people throughout the day......the genuine small glance, half smile, kindly nod, momentary assistance, stunning sun beam etc......it all sounds really trite when you write it down, but in the moment......it is GOLDEN.

Keep the faith Zoe....you will recover some energy and some enthusiasm for your world soon enough.

The key is to keep sane whilst you wait.

With understanding & support to you.

Number.

Thanks for your reply, and don’t apologise for going on. I didn’t skip anything (sometimes I doing I can’t cope with long replies!). 

That’s the thing though, maybe I don’t want to be me. The older I get the less I like myself. Maybe it was easier when I was younger, confused and naive. I don’t know. You say I am loved, by maybe 3 people, literally. I don’t think there will be many at my funeral! And that in itself is sad, because I guess I haven’t made a mark, I’m not seen as valued and someone that offers something to the world. But I wish I was. I’ve tried to be generous with people that I’ve had in my life in the past, and I still am with acquaintances. But it’s never reciprocated. So I guess the older I’ve got the more bitter I’ve become and realised it’s not really worth trying anymore. Sorry that all sounds so pessimistic (I’ve always been pessimistic, it’s better that way, your not surprised then) and depressive, but I’m actually not really what I’d classed as being depressed atm. But to everyone else I’d be seen as miserable! Anyway I’m diverting from your post - sorry. 

But yes you’re right in that it has probably become my special interest, something I hadn’t realised. Not long after diagnosis (less than a year) I thought I should train so that I could be involved in some way in a work sense, that always happens with my special interests until I’ve had enough and move on to the next thing. 

Anyway thanks for your reply, it’s appreciated. 

Absolutely agree with the lockdown. I was a lot more productive in my home too as I wasn’t tied to the morning rush of getting ready. 

Having been diagnosed just after Covid in 2021 here in Manchester and now age 52, I’ve still not been able to find (relevant) sources of post diagnostic support and I’m still no nearer to knowing for sure what I’d want nor need from such support - maybe (as my family in Ireland keep banging on about)  a live-in carer and/or residential placement, work buddy, coach, autism boot camp and travel chaperone for long distance travel over 20 miles (at least in the short term) would be a starting point, but I honestly don’t know - the fact that most autism support services are mainly geared towards children means a better level of and access to support for them, but for us autistic adults, regardless of an assessment as to the level of our autism as adults, as we approach retirement age, we are cut loose and left adrift to our own devices - it reflects how mental health supports and funding on the NHS is always the poor relation - and even those (expensive) private supports still require red tape, like GP referrals, despite full reports being fully available - if an ageing population with autism continues to grow and if we still experience this form of disability discrimination by effective denial of proper supports in our later lives, what kind of quality of life can we possibly expect to have in our later years? 

I’ve been tired and have little interest in anything else for over a year. Lockdown was the nicest days I’ve ever had, it was having a year of quiet and not dealing with people, it was so beneficial, after lockdown finished was when my life imploded. I had to examine every single part of my  life and to be honest, not blame myself so much now. I wasn’t a bad person, I was just confused and over stimulated most of the time. If the anxiety could be tamed, the rest I can cope with. I think knowing at an earlier age would have made me a better parent.

Trust me Zoe....I know how hard it is.....and I'm not succeeding myself (with any meaningful consistency) to consider myself succeeding at delivering on my own advice either.  But as they say, "if you don't have a dream, how you gunna have a dream come true!"

Keep smiling.  Keep in touch.

Yes this is exactly it. It’s that extra thing that’s on top of already being exhausted. And yes, I guess it is the latest special interest, I’d never thought of that. It seems to be going on for a long time though. I usually flit between different special interests (likely add too) but this doesn’t seem to be going away. 

Number said:

."Oh bugger, I've screwed up my life and the lives of others around me through self-ignorance.  Now that I have the knowledge of why (to a large extent) that is the case, I am going to USE that knowledge to ensure that the next quarter century is f**king brilliant!"

Yes do keep telling myself I need to do this, but it’s easier said than done. I guess one of the things that annoys me is I never go anywhere. And I’m getting slightly fed up with it now, after all it’s been a long time. 

I massivley feel for you with that attitude from family, that is just abuse. I was never allowed to be diffrent but it wasn't abusive, I think my parents we gueinley trying to do what was best againt a background of ignorance. Take care of your self and do as you feel is right.

I’ve felt this myself at age 52, having been raised a Catholic in Rural Ireland and having been told that my autism is a a consequence of my childhood disobedience, which has resulted in “punishment from God” which has been screamed at me by certain extended family members, yet ironically, it’s been my own personal sense of Catholic faith that has carried me through this, even during my being gay in my teens up to 15 years ago - I’d now be very reluctant to reconnect with the gay community given my own experiences of non-acceptance at the hands of the gay community up to 15 years ago, even though I’m aware that many LGBT’s are autistic 

I’m pretty much the same age as you. I’m sorry you are struggling. I can certainly relate to the extremely strict upbringing. I had it very similar. In fact I often wonder if I quickly learnt to mask as a child to stop the harsh telling offs I had throughout my entire childhood. Which didn’t actually work because I was always being told off and made to feel stupid. I always take criticism or someone belittling me really badly as it creates this awful feeling of fear inside me. 

If it helps, and full disclosure I am that rare beast, an autistic person involved in pre assessment screening and post assessment mentoring and support.

I have spoken to literally hundreds of people who have just received an autism diagnosis, over 20 just this year. It is a big life changing event getting a diagnosis and all is have questions and unresolved stuff which have taken years and years to build up. 

I don't know how long ago you were assessed, but analysing yourself to death is really common post assessment, I did it myself for long enough. One of the most common questions I come across is which but of me is me and what is my autism. The truth is that they are one and  the same thing.You are you because you are autistic, if you could take your autism away you would not be you. Wish you were not autistic is like wishing yourself away. People love you, hard for many of us to get our heads round, but we are liked and loved by others because of who we are, and that includes our autism. You are not a broken version of a non autistic person, but there are challenges.

I am trying to manage my obsessions.at the moment.as they are making me poorly (Astronomy related stuff, I scratched a telegraph Christmas, it ruined everything). You will have had intense special interests in the past, autism is your latest I am guessing, but it will pass, you can't and won't stay your own special interest forever. You will find your new 'new'.

A diagnosis is a gift, it is a privilege these days with waiting lists being what they are. You have been given an opportunity see start again and put a full stop on everything that went on before. An opportunity to be who you really are, to be kinder to yourself, to forgive yourself and your younger you and to look.at your life through a new lens and do what you need to do.to be happy on your terms.and without guilt.

But all this takes time...

Someone mentioned imposter syndrome, yep, been there, done that, it's really common early on and can take time to work through, but you will.

I hope my post helps a little, I go on a bit.....

I fully understand where you are coming from, I’m in my 50’s and seem to now lead an autistic life, it became my new special interest. Finally knowing why I’m different has been a double edged sword. I would love to visit myself in my 20’s and tell me so much. I almost mourn the person who portrayed me. I’m struggling to know what bits are me and what is the masked me. I never really stop thinking about autism, that on its own is exhausting.

Sorry that I mis-aged you.  Not a strength of mine.

This is going to sound trite, so apologies in advance, but I think it is true - and is certainly the path that I am now taking.......

Don't get stuck looking back into the past.  The past has happened.  Its over.  There is immense value in looking back into the past and I do it often.....not just my life, but the lives of others and the civilisations, beliefs and behaviours that have come before.  BUT.......don't get STUCK looking back.

My approach is thus......."Oh bugger, I've screwed up my life and the lives of others around me through self-ignorance.  Now that I have the knowledge of why (to a large extent) that is the case, I am going to USE that knowledge to ensure that the next quarter century is f**king brilliant!"

Keep smiling Zoe......we are not as old as we feel.....we are capable of sustained brilliance.

I’ve had much the same experiences during and after Covid diagnosis in 2021 here in the U.K. at age 52 having been “encouraged” to get the assessment by family in Ireland after redundancy from supermarket retailing after 17 years in 2019 - it does not help either that my family in Ireland simply refuse to understand autism in any other terms other than that of lack of “cop on” which they firmly believe and maintain can only be managed by the use of ultra-strict Millitary-style discipline and dismissing all other views and opinions (especially coming from myself) as “nonsense” and thier saying things like “if you had been given far more corporal punishment in childhood, slapped far harder and far more often in childhood, you would not have this “thing” and in screaming at me to “shut up, because you do not understand that you are (always) wrong (by default) on everything - and “everyone else” says so” - being later in life diagnosis is a very similar experience to my coming out as gay in my teens and especially that I come from a traditional Irish Catholic Rural cultural background as the only child in my immediate family living alone in Manchester 20 years, with 30 years in supermarket retailing - it also makes it much more difficult in my current hotel job when dealing with cultural differences and language barriers, also with so little post diagnostic support for autistic adults in my experience 

I wish I was younger, I certainly feel like I am in my head, but unfortunately the aches and wrinkles say otherwise! I’m 50 and was diagnosed last year. 

I think I’ve looked back over the years wondering if I’d have taken a different route knowing what I now know. I haven’t had a great life, was in a DV relationship at a young age and always put that down to my troubles with other people. Maybe not now, I have no idea. I feel like I’ve wasted my life. I spend half of my time not caring if I wake in the morning, and the other half worrying that I’m at the age where people start to get ill. 

Finding out feels like another burden to carry - if that makes any sense at all. But then it’s also like a revelation. 

Ugh.