Navigating a recent late diagnosis

Phased said:

The US CDC figures are available here (1 in 36 children)

but the NHS stats show adults autists make up only a 1,32% of the population.

https://digital.nhs.uk/supplementary-information/2024/autism-prevalence-in-england-march-2024

elias said:

WE ARE THE 1%

ellas is factually correct here (based on the fact that only adults are allowed to use the forum).

This will change as the children grow to adulthood and more adults become diagnosed of course.

Just pointing out a nuance of the stats where you are both right, but not actually talking about equivelant things.

The US CDC figures are available here (1 in 36 children) if anyone would like to see them Data and Statistics on Autism Spectrum Disorder | Autism Spectrum Disorder (ASD) | CDC  

elias  is very new to the groupAUthenticity and hasn't previously posted nor made an "introduce yourself" post. It will be fascinating to read the response to such an unusual post...  :-)

Hey, thank you for responding. I'm glad to hear that what I said resonated to some extent - but of course i'm very sorry that you have experienced these difficulties too.

Where are you in the world, if you don't mind me asking? It is challenging enough to get support and acceptance here in the UK, so I can't imagine how hard it must be elsewhere.

It's very exciting to hear that you're going to be on the BBC - will you be in a documentary, or appearing on some other show? 

:)

Hey dude,

Omg, reading this is like listening to a twin. Absolutely same here. 

However,  I’m aged 25. I don’t know where you come from, but I come from one of the worst possible places to be autistic in the world. I also have ADHD. So for me being autistic as difficult as it is for a normal human being was 10 x more difficult for me. In fact I will soon be going on the BBC to tell my story, supported by a local and international charities, organisations and etc, but I would absolutely love it if fellow brothers and sisters want to join me, I know that you don’t even know me, but let’s not forget the one thing that connects us on a deeper level than it would ever connect any lovers, family members, or friends - WE ARE THE 1% - AND NO BOND IS STRONGER THEN THAT. 

Sorry you didn’t get much joy from the event I would imagine it will have a been a big deal. I don’t think I would be brave enough tbh. 
I  not sure about work will need to see what options are available. I agree with your assessment it’s a big thing so not going to rush into something. 

Sorry for the slow response, I have been away for a couple of days - I went to A-Fest (Autism Fest), my first experience of being out in public as a diagnosed autistic person, which is a whole other story...!

I think you are very wise to have seen the signs of a severe burnout and to be taking steps to avoid it. It is certainly something to avoid if possible. It is very unusual to take what feels like such a drastic step as leaving work though, especially when so much of our status and worth and blending in is tied up in work and being productive. And that doesn't even cover the economic necessity. It's all so delicately balance between what is ultimately the lesser of two evils. Do you have a sense of which is the lesser evil in your situation? 

I'm okay. There is a lot to process after that A-Fest experience. Most notably the fact that I was hoping to feel like I'd found my tribe, and I'd meet people who had walked this path to an extent that they could be role models for where I orientate myself next. But it was not the magical, transformative experience I had pinned my naive hopes on it being. Which is not surprising, but it is disappointing. I am scouring the landscape for somewhere safe to land, and I thought that might have been it to some extent. The search continues! 

Sorry to hear that and agree better to take it day by day. I am concerned about getting a severe burnout, so would need to think through any work option/change carefully. After working for 33 years or so feels very odd to possibly be giving up work. 

Feeling better today which is good, still a bit tired but that is not unusual. 

How are you getting on?

I understand that too. I was offered a new role where I worked last year, and I had to turn it down. I had a Zoom meeting to discuss the job, but I felt so sick in the lead up to the call that I just had to say no - I didn't have a choice, my body overruled any attempt to convince myself that that I was well enough. So I know that awful feeling of being pulled along by the inertia of what you've done before. I've tried to make all sorts of deals with myself, but when you've already been doing that for years and you're past breaking point none of those tricks work anymore, at least not for me given it's my second severe burnout. It's so difficult to know what to do in the long term. I guess all that we can do is try to be kind to ourselves and not overthink in the short term. I hope you had a better day today...

It does feel a very similar story, I've had maybe three weeks or so off work now, I've been given some time off to get my head together. I tried to go into the office a few weeks ago and it blew my mind. I just hid in my office. Not sure what to do really, my boss wants me to stay on in some role, not sure what.? There is no way I can manage people again. Its a tricky one really, part of me wants to carry on but don't really know why? Maybe its a fear of change thing. I should probably finish up but thats feels very drastic. I still need to do some thinking about it but my heads been in bits really. 

Glad I've managed to help in someway and its definitely helped me that someone else can relate.  

Good evening Bunny,

I suppose that the work of self discovery and growth is never ending for everyone, so it makes sense that there are even more layers of work to do when you discover you are neurodivergent.

I completely understand your procrastination problem too - I've been trying to work out whether it's pathological demand avoidance (PDA) as I've always been so bad at doing things like meditation or going to the GP to get help. I always used to joke (somewhat unoriginally) that if there was an Olympic games for procrastination I'd never get round to applying! 

I'm really sorry that you're having some physical health issues. I understand why they must feel more pressing. I find physical health problems far more tangible, and the interventions are usually clearer and more direct. I hope that you are coping with whatever you are going through, and that the investigations bring you good and reassuring news.

Thank you for sharing the link to that book - I have downloaded it onto my Kindle to start reading tonight. I have just finished re-reading Pete Wharmby's book 'Untypical' too, which I really enjoyed.

I am with you too. I completely understand how you're feeling, and I seem to be on the same journey as you at the moment. I'm sorry to hear you had a bad day yesterday, I had a bad day today so I feel like I can relate - it is such a rollercoaster, day to day and moment to moment. On balance I am glad I made the discovery too - the only path ahead is through self awareness and acceptance. Doesn't stop me from really resenting it a lot of the time!

I also feel like I have regressed in so many ways since my diagnosis. For me it's been like realising I've been wounded all along, but the adrenalin and stress of living always dulled the pain...But now I've seen the wound I have collapsed. The old tactics of denial and hope that things might somehow change don't work anymore so a new strategy is required...

And I absolutely feel your pain with the work conundrum. My whole career was built on masking and a 'fake it til I make it' mindset. It turns out it was actually a case of 'fake it til it breaks me'. I'm not working at the moment, and also trying to not think about it while also waking up everyday with a knot in my stomach trying to work out what on Earth to do next. 

Are you still working at the moment?

Thank you so much again, you have already helped me so much.  

You're welcome!

AUthenticity said:

How long have you been going through this process?

It's coming up to 18 months since my diagnosis, and I certainly don't feel like I'm at the end of my journey yet.

I think I'd much be further along by now if my GP had followed up on the various actions that were recommended in my assessment report. That's also partly my responsibility, because I haven't chased them.

I did follow up on the therapy / counselling, because I could more easily understand how it would benefit me. I keep procrastinating about the other matters (who'd have thought?), but I've also been sidetracked by some physical health issues that are under ongoing investigation and that feel more pressing. Anyway, I'm due to see them again soon, so perhaps I'll finally press that button, too.

I used this as my guide in advance of starting counselling (my choice, rather than more therapy, which I've tried before). I know you said you're having therapy already, but maybe it could still be helpful in some way. Many of us here have found it useful:

The Autistic Survival Guide to Therapy

Hi AUthenticity, thanks for your kind words, I think I am on the right track but its very bumoy. I didnt have a good day yesterday. I certainly feel I have regressed in a lot of ways since making the discovery. I am with you, it took a lot of courage to ask for help, something I am very much rubbish at. I have seen it is a sign of weakness and like you don't like to be vulnerable, I think on the whole I'm glad I made the discovery even though its been hell. I think I was heading for a more serious burnout and worse health issues. My next big thing is to decide what to do about work...something `I'm trying not to think about!

Good afternoon Bunny,

Thank you for responding so quickly, and with all that useful material. I am going to make a cup of tea and work through it all this afternoon! 

How long have you been going through this process? One of the things I've noticed is that some people talk about burnout and accepting their diagnosis in terms of weeks, others in months and some in years. It's already been about 6 months for me and it still feels like I am still at the very start of the journey. 

Afternoon WhiteD404,

It sounds like you're doing really well, and you're making good progress really quickly. You're covering ground in weeks that has taken me months!

You are so right about trying to let the people who love you help. I am not very good at that, to be honest. Part of the mask has that I've always been 'fine' and I try to help others around me. Feeling this unwell and vulnerable is incredibly difficult, and there is still a huge part of me that is wishing this would all go away and that I can just be 'fine' again - but I now that door is closed to me. I just need to accept that, as resisting the inevitable is the thing that is probably causing me the most harm now.

Thank you so much for sharing your thoughts, they are so relatable and helpful

Afternoon Iain,

Thank you for your response, everything you said resonates very deeply. I agree that diagnosis rates are likely to increase, in part because I do feel like the tempo and underlying structure of the world today is increasingly at odds with the autistic experience.

More than just being unprepared to learn, I also think that people simply don't need to learn. Trying to build empathy with, or even just rational compassion for, another group is incredibly demanding, and even the kindest and most open-hearted will struggle to find the energy to do so when their lives are already so busy. 

I think I need to consider changing therapists too, as mine is not a specialist and I don't think they can offer the help I need at the moment. 

As for friendships, I'm also trying to understand what it means for all my old friends. I've felt very distant from even my closest friends from school and university - again, I'm trying not to overthink myself out of aspects of my 'old' life that are still vital for the future. At the moment everything feels like it's up for grabs.

I can really learn from your idea about trying to not have a victim mentality. I had the same revelation last week, so I'm going to really try to focus on that. This is happening, so I can either let it win or try to consciously take control. Still early days for that mindset, but hopefully with practice it will gain momentum and change how I see things.

Thanks Iain

Hello Phased! Thank you for your thoughtful response.

I agree with how you've approached the 'new reality' aspect. I do have a tendency to be quite black and white in my thinking, so a more nuanced, integrative way to think about it is definitely in order. More of the old me can and will persist than I sometimes imagine.

Similarly with your second point - trying to discern what it is really 'me' versus how I'm feeling in my state of burnout is very hard. As i said, I don't want to overcompensate and close off avenues so you're right - some examination into the distinction between the two will be really valuable. 

Thank you again

Hiya AUthenticity 

your history personally familiar

Reading it I would suggest analysing the "new reality" bit.  For me I'm coming around to realising that it's the same reality - what is different is the way I relate to it and the expectations that I have of myself within it.

Tricky separating the symptoms of burnout from the experiences of one's own personal autism too and their interaction - might be worth doing a bit of study and self examination on that as part of the process.

All the best :-)