diagnosis

I would not have believed it without a diagnosis. So any change was going to be impossible without that. I needed to know I had not failed for no reason.

I needed to know if/why I was burnt out and if/why I was susceptible. Why my life felt like 56 years of endurance waiting for it to start. Why my life is the way it is.

When I realised, then had it confirmed, I had an overwhelming, crushing sense of loss. I wasn't sure I would survive it, I won't say more. I ended up sitting in the church asking god for guidance. No matter how hard I tried I was not going to be NT. I was comparing myself to the wrong thing, and I had set the bar so high no one could reach it anyway.

There are multiple overlapping issues for me, autism made me susceptible to other things. I have spoken to 2 counsellors and 2 psychologists, to confirm a few things. But mostly I have analysed myself in as much detail as I can. It is hard when you don't know what you are looking for. But Like peeling an onion, layer by layer, to see what depends on what, how I really think, what modes I have, what causes stress and how it affects me, what issues I have, where they came from, what is different from NT. It has helped with the trauma, the burnout is largely gone, I am calmer, I can think better, I am still fragile.

It has taken a year so far. I think it will take more, but I am basically done, it is just a question of improving my life now as best I can. The mistakes of the past cannot be undone, and the knowledge at the time would not have helped much, indeed might have made things worse.

I could not have arrived where I am by another path, but it is not a path I wanted. Things slipped through my fingers. From the outside it looks like I have done ok, but it was a mask, it cost a lot and I don't have much to show for it. It could have been worse though, but much feels hollow and I barely remember big chunks.

I have found I am almost a text book example of a couple of things.  I have struggled at the 'right' times, but I was hyper independent and kept going with costly adaptations, rather than fail and get help.

Has finding out been good? I couldn't continue as I was, but finding out was equally hard. Will the future be more sustainable and bring more peace and calmness, I hope so. But it is a work in progress and the only person that can change me is me, as long as I can figure out what to change.

Is this a good or bad story. I don't know. Your experience depends on your background. The point is it takes time and you need to be gentle with yourself.

I felt relief too, I was diagnosed in 2010 aged 50, but it frustrates me that there's so little help or understanding and the attitude is that you've been ok up until now so you can ust carry on. Many of us haven't been ok and continue not to be ok and have nowhere to go with it.

I went to a local group that covers the whole of N, Wales, they asked me what help I'd like and I asked what they offered, they said they coiuldn't make suggestions and that I had to ask. When I mentioned things like filling in forms the response was luke warm, suggestions were made about CAB and the like, which all in all didn't feel very helpful. They couldn't help me with digital skills, after listening to me describe my problems on the phone for 20 mins the woman still said they do most stuff via zoom calls and I wondered what she thought I'd been talking about and if she'd actually listened at all.

Being diagnosed later in life reminds me of being diagnosed with arthritis, oh theres nothing we can do apart from pain killers until everythings so knackered I might get a place on the waiting list for a replacement. 

It's not wrong at all.  There are as many responses to a diagnosis as there are Autistic people who've had one.  And how you feel about it might change over time as you processes its meaning to you.  None of this is "wrong".  All of it is right for you at any point in time.

Personally I was delighted.  But then it came after some rather damaging misdiagnoses.  Oh, I'm just Autistic then, thank God for that!

But you are right, the world is still the world and it doesn't fix whatever it was we were struggling with.  There's not a huge amount out there to help, but there is slightly more than absolutely nothing.  It might help to make a list of the priority problems you'd like to address and then see what might be available locally.  Sometimes there are little things - my big issue is in medical environments - I do now have a medical 'passport' and more understanding from my GP, for instance.  My sensory system is never going to change, but this does help get through some appointments.  

Whatever goes on your list, it might help to find a local support group.  In our area CASS ran online and in person groups for people who were newly diagnosed or awaiting a diagnosis. The conversation was mostly about processing the diagnosis and brain storming solutions to all kinds of areas of struggle from making friends to using public transport or finding quiet times at the local swimming pool. Perhaps your GP's surgery might be able to point you in the right direction.

Dear NAS78944,

Thank you for posting, I know that many of our community have gone through similar feelings when they have just been diagnosed. I hope that this feeling might get easier with time, but I know it must be challenging to feel low after receiving a diagnosis. 

In terms of getting support, it is really common to receive a diagnosis and not be given appropriate aftercare but it could be worth reaching out to your GP or local social care team to see if they know of any services you may be able to access. The NAS also run a Autism Services Directory this is a helpful tool where you can look at what may be available in your local area such as support groups, activities and specialist providers. 

Please keep reaching out to the online community, we are all here for you. 

Best wishes,

Olivia Mod

It is a sad state of affairs that there is little or no meaningful support after a late diagnosis. You now have on one hand the information of who you are and why *** happened in your life. On the other hand it is almost as if you now are teleported to different world knowing you are different but that society as a whole does not care. Hence the tag of being a 'Lateling'

I was relieved to find out I was not broken but the post diagnosis events have almost broke me. I ask for help at work, was refused effectively ending my career in my fifties. I am now in the process of an employment tribunal claim against my employers.

Sometimes I wish for the ignorance of not knowing and be back to doing the career that I always wanted to do since I left school, which now has been so cruelly taken from me because I am autistic and dared to ask for reasonable adjustments.

It is such a heavy burden to carry on especially in todays' economic climate.

NAS78944 said:

now i have a formal diagnosis but  has it has changed much.

You are the one who has to make the changes, if any, and make all the effort I'm afraid.

There is very little useful support available on the NHS so don't expect this to provide any relief.

My recommendation is to do the following.

1 - learn about your autistic traits and how to reduce their impact on your life. This is the one thing you have full control over. A good book to start with that does not require much sustained focus is "Autism For Dummies (2025) - ISBN 9781394301003 (paberback); ISBN 9781394301027 (ebook)" - it is easy to dip in and out of it to get the info you need. 

Use the search function on this site and look up more info as well, see how other people cope and consider if these techniques could work for you.

2 - sign up to use a psychotherapist with experience of helping other autists. This will be the single mose effective thing to do in my opinion as they will work with you, encourage you through any natural resistance and shape techniques to help your specific needs.

I also got a belated diagnosis, in mid-2022. I can relate to the feeling like you're on the wrong planet. I was warned by my GP that support wouldn't be easy to come by when I initially requested a referral in 2019, so I wasn't expecting any great breakthroughs. But I'm glad that I persevered, if only because now I know myself better and understand why I feel the way I do.

Having family support has been super helpful to me — my mum and sister know to check with me about various things so I don't get too many surprises and changes of plan at once, and understand that I'll sometimes need to go to my room for a while to recharge.

I don't know what else to suggest, other than keep looking for any support that might be available, and talk to your GP if things are getting really bad with your mental health. Good luck!

I essentially felt relieved, I knew, at last, why I was the way I was and am. It was useful in giving me better insight into my problems. I did not expect the diagnosis to solve my problems, so was not disappointed. I also had no expectation of external support, I had reached 59 without any support, how could I make a reasonable case for receiving it now? Again no disappointment.

The diagnosis did allow me to devise more useful 'work arounds' to cope with societal pressures and allowed me to bail on, or opt out of, events I knew would be distressing, without feeling guilty. It also allowed me to forgive myself for past failings.