Late diagnosed female with autism (39) shutting down

Hi,

I was diagnosed with autism a few weeks ago. I was angry - I grieved for the life I could have had , how things could have been different.

But now I am going through something else. I can barely form sentences, the cognitive effort of speaking to anyone is so great that a ten minute conversation makes me feel exhausted , everything is too loud , my body hurts all the time and I am struggling to see the point in anything.

I had a week off work and got nothing done I was intending to. I just stayed in bed and occasionally played animal crossing. Now I am back at work and yesterday I had to stop at 1:30 because I physically couldn't stay awake any longer. Back at my desk today (work from home) but everything is just a lot.

In the past when this has happened when I had other diagnoses I was considered to be in a depressive state. Now I don't even know if that is what this is anymore. I feel like i've lost the language to describe what's happening.

I don't really know what I am saying - has anyone experienced similar?

  • The most important thing is to get enough sleep, so sleep whenever you can, doesn't matter what time of day it is. Try eating carb heavy foods and reading in the evening, and if you're using an e-book turn on blue shade. If I'm feeling like I can't settle to a book, I'll play solitaire or a word game on my tablet - the repetitive nature of a game like that is like "mental stimming" for me. Make sure the room is cool enough and the curtains or blinds are shut tight when you try to sleep. A fan can help, as it cools the room and also provides background white noise which can be soothing .

    If you're not ready to go back to work meetings, speak to your doctor about this - they may sign you off again. If they don't, speak to HR or your manager and say you're not ready yet. I see no point in you being made to do something you don't feel you can cope with as it may make you unwell again, and then you'll have to take time off anyway.

    If I was you I'd also be reassessing whether this is the right job for you. Can you afford to take time off to retrain, or maybe you could move to a low stress role or one where you don't have to interact with people so much?

    Wishing you well.

  • Thank you this is really kind x

  • I hope your good self-care routines help to re-anchor you OK. 

    I wish that you can give yourself the time to - not sure of the best word choice - maybe quell or acclimatise?

    It is easy, or somewhat glib, to say: "be patient with yourself" but there is wisdom behind the sentiment and intent.

    However, there is also absolutely no dishonour in seeking help with things if you are struggling.

    Next week looks like a slightly less sunny week - so maybe you can shuffle your calendar tasks with your own area's weather forecast in mind.

    Best wishes.

  • Hi All,

    Thank you for all your help. 

    I thought I would update you.

    I was signed off of work. For two weeks. I am back now under reduced hours. I have been re-referred to NHS for psychiatric care and psychotherapy. 

    Still no nearer to any answers. Work is difficult. It is like a switch has been pushed and I am seeing behind the curtain and just can't care about it anymore. For context I am a director of compliance and risk. I just keep reading the emails and thinking who cares honestly , what is the point?

    I am finding it really hard to put my game face back on. Next week I will have to take meetings again and the thought of looking at people and them looking at me and having to remember how to be around them is exhausting. 

    But this is life right? I don't even know anymore. 

    Outside of work I am trying to get my sleep sorted, I have had 4 different medications to help me sleep in the last few weeks from the Dr, none have worked. The last one was 1mg of Melatonin and of course it done nothing and the Dr said I need to wear myself out more to be able to get to sleep. 

    I can sleep but not at normal times - if everyone else is going to sleep I am wide awake and if they are awake I can sleep.

    Honestly, the weather isn't helping as I really dislike the sun - it is so bright and warm and I feel constantly uncomfortable.

    I don't know. I just don't know. 

    I hope you are all doing okay and sending you so much love for welcoming me into this community.

  • Hi, just wanted to say hi. I'm 41 and also late diagnosed. I had a very similar experience, although I went into denial for a long time after my diagnosis. In fact I was actually diagnosed 8 years ago but carried on my life in constant burnout, determined not to let autism 'beat me' (it's awful I know but I was full of internalised ableism). It's only when I pretty much had a breakdown that I reached acceptance. I went through the grief stage, thinking how my life could've been different if I hadn't been so misunderstood, then obsessive research stage (it's amazing how little I knew about my own condition). This research enabled me to understand myself a lot better, so much so that I seemed to enter a new burnout, kind of like a relief that I can finally rest, be me. It's like my life finally made sense and it gave me a weird mixture of sadness and grief and it seemed to overcome me after dissociating from all for a long time. It sounds like you might be in burnout, that something subconscious has happened since your diagnosis. This happens to me every once in a while, but I don't know what my body and emotions are doing half of the time! Please give yourself time to rest. Do some research, look up 'unmasking' which is really helping me. Listen to your body and do what you need to rest and recover from what has been a big revelation in your life.

    I wish there was more support out there for late diagnosed adults, we're kind of just left to get on with it, yet people our age have grown up in a time where autism was barely recognised and are surrounded by people with outdated ideas of what autism is (at least that's been my experience anyway). 

  • Hi Jax, welcome to the forums.

    Sorry to read your post and can say I can fully understand where you are at. I was going through something similar a few weeks ago now, where I discovered that it was highly likely that I was autistic. The whole premise blew my mind and went through a lot of things you are talking about, such as how things could have been different if I made the discovery sooner and despite my best efforts to try overcome my issues it was never going to work out in the long run. I've regressed a lot and where simple conversations with people who I am not so close to is very hard and draining. I've been off work for a few weeks but need to make a decision soon about what to do next. I guess there is no chance of getting some time off work to rest up? 

  • That was a thank you to you all btw :)

  • As an adult are there any resources available such as workshops / groups / etc outside of this forum that could be useful as I learn what this all looks like?

    Some suggestions:

    1. Check the NAS's Autism Services Directory, which does include groups among its listings. You'll need to specify what you're searching for (I suggest keeping it to "group", at least initially), and then enter your postcode and select a search distance / radius (0, 5, 10, 20, or 50 miles).

    2. Consider joining an online NAS branch - the linked page includes details of online NAS clubs focusing on books, arts and crafts, running, and LGBTQ+.

    3. Contact your nearest volunteer-led local NAS branch, to see whether they can offer support or make any recommendations for you, informed by their local knowledge. 

    4. Try searching on Facebook for autism groups in your area. 

    5. Finally, it's always worth trying Google (or other search engines). I'd suggest a search phrase like: autism support group and then also including the name of where you live - or the nearest sizeable towns, doing separate searches for each of them.

  • Thank you all - the resources, reassurance and kind words have really helped. I have felt really alone. 
    I will look into the resources and talk to my Dr.

    As an adult are there any resources available such as workshops / groups / etc outside of this forum that could be useful as I learn what this all looks like?

  • Welcome to the 'Latelings' club.

    I was diagnosed around 18 months ago and went through everything you describe. Take time off to allow everything to process. There is no point pushing through as that rarely ends well with a more severe and long lasting burnout on the horizon.

    Think long and hard about disclosing to your employer. I naively though I could ask for help and be supported only for my manager taking it as an opportunity to move out of my career and bee redeployed.

    Please note that is my personal lived experience is offered as example to consider. I wish you all the best.

  • Hi and welcome to the forum. Sorry to hear that you are not coping well at the moment. Maybe you are still grieving for what you think you have lost out on. Depression can cause most of the symptoms you are describing and depression is common for autistic people, so I would suggest talking to your doctor to let them know you are not coping and hopefully they will be able to help you through this. Also speak to your manager so that your company know what is going on and can support you too.

    It will pass, but I think your body and brain are just telling you that you need a break to process things and recover properly. Look after yourself.

  • Hi Jax - congratulations on your diagnosis and welcome to the community!

    During the period following a diagnosis, it can be common for us  to experience a lot of emotional dysregulation. Besides feeling relief about getting our diagnosis, this can also include working through a phase where we experience confusion and/or (backward-focused) anger, frustration, grieving and more.

    You might find these resources helpful - and, given the extent of your current struggles, might perhaps also consider contacting your GP for support:

    NAS - Autistic burnout and fatigue - a guide for autistic adults

    NAS - Depression

    The NAS also has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months. You might find them of interest and/or helpful. These, in particular, might be most helpful right now:

    NAS - How you might feel after a diagnosis

    NAS - Other advice covering post-diagnosis including:

    • Talking about and disclosing your autism diagnosis
    • Emotional support for family members after a diagnosis
    • Formal support following an autism diagnosis
    • What can I do if formal support is not offered or is not enough

    In terms of what else to do next, my advice at this point (ie soon after your diagnosis) would be to try and give yourself plenty of time and breathing space to process and absorb everything that you've been through, and let your feelings settle down. 

    For me, as for many others here, my diagnosis turned out to be much more of the start of a new journey, rather than a conclusion full of ready-made solutions for my various difficulties. 

    Therapy is often recommended after a diagnosis as a follow up action for your GP to arrange. You might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful, myself included:

    The Autistic Survival Guide to Therapy

  • I’m sorry you’re having such a tough time at the moment. It’s completely natural to feel like this post diagnosis I was also diagnosed later in life. From what you’re talking about you could be experiencing autistic burnout. There’s resources on the national autistic society regarding this and dealing with feelings post diagnosis that may be beneficial to read. I think these resources are under the advice and guidance section. Therapy could also be beneficial I know this has personally helped me. You can access this by going to your GP. Also, if you feel comfortable you could disclose your diagnosis at work and request reasonable adjustments to make work more accessible which might help. Also just sharing the info with work if you feel comfortable may help as they will be aware you’re struggling.

    Wishing you the best Blush