How did you cope with your diagnosis?

Hello,

Another post I have just read inspired me to start a discussion about this. 

I've recently been diagnosed ASD. I thought I would be absolutely ecstatic with the diagnosis, finally having answers and reassurance. Actually, I have reacted the complete opposite! I feel it has consumed me, and it's all I think about. 

I want to know how other people have coped with their diagnosis, whatever it may be, and however long ago it may have been. Also, if you didn't cope well with it, how did you eventually start to feel better about it? I'm not sure whether to reach out to my boss and ask for some more regular coaching from a trusted colleague who I already go to for coaching once every 5-6 weeks for 1 hour. Does anyone think this may be a good idea? 

I feel this is a trusted space, and can't believe I've actually posted this and broke through a small barrier of my social anxiety! 

  • I can relate to that. We'll get there! :) 

  • Thank you for sharing. I truly hope that we can both be comfortable with who we are one day. I too feel like I have answers, but sometimes the answers make things a little bit more confusing. 

  • I think my biggest goal may be to stop feeling like I can only be my true self at home with my partner. I feel I am so good at masking and camouflaging at work and around people who don't know me too well. I know I won't be in this place soon, I know it will take time. I'm looking forward to being myself in all situations! Thank you for sharing your experience 

  • I really relate to you when you say 'convincingly fake it'. This is exactly how I feel sometimes! 

  • I'm glad you found this empowering, it's a mindset I hope to have in the future xx

  • I'm two years from diagnosis (today, actually) and I think I still haven't completely come to terms with it. I accept that I am autistic, I am glad I finally got an explanation for a lot of things in my life that made me feel weird and inadequate, but I still struggle with what it means for me and my life. I can't really say that I see it as "a difference, not a disability" as many people here say. I do feel disabled, at least in some ways, and I don't feel I have any of the "autistic superpowers" that some people describe. I want to see it as a difference, but I'm not there (yet?). I'm hoping things might get better in coming months as I get married, move out of my parents' home and life with my wife (my fiancee is a lot more compatible with my autistic needs than my parents) and perhaps I'll be able to improve things job-wise too, but at the moment autism still feels something I struggle with a lot of the time.

  • Hi! It's been approximately 6 months since my diagnosis after taking about a decade to get up the courage to find out. I was anxious about the results either way ha! If I'm honest, I didn't actually fully process the information straight away. It took me two weeks to get up the strength to read my report and longer to tell people other than my immediate family or friends. I struggled because it's not something that would naturally come up in conversation, for me anyways. I was under a lot of other pressures and mental health issues so it has taken me quite some time to start processing the information, understanding what that means for me and my identity as I have spent such a long time camouflaging and suppressing. Taking my time with the information, reading other Autistic's experiences and books/tips has been so beneficial and support from the Autism service post-diagnostically. 

    It took me some time to decide whether to disclose this in work but it was a positive experience. Some good supervisors of mine explained the benefits and protection it would provide me regarding reasonable adjustments and it's not all on you to help you cope. I still haven't decided whether I will tell my work colleagues but that's a decision for another day. Personally, it helped to share the news and to have someone I could talk to and I trusted to share this information as it helped reduce the internal stress and pressure. 

    Be kind to yourself and take the time to process and let the information settle would be my advice. You can be happy with the news but feel overwhelmed by it because it's a lot to process and a form of change. 

    Also, thanks for posting. I never post/reply to things as it freaks me out. Hope it helps! :)

  • Well done for breaking through the anxiety barrier by the way!

  • It’s very much been ups and downs for me, and I think it will be for a while! Had my verbal diagnosis just under 4 weeks ago and the official letter yesterday. 

    As I’ve written elsewhere here, spent a lot of time doubting the diagnosis and convincing myself that I’d done enough research prior to my assessment to convincingly fake it. Having it in writing seems to help with that though. 

    The main thing for me now is I’m also giving myself permission for things to bother me. I went to a museum a few weeks ago and the gallery I was in was getting pretty busy. Usually I would get irritated by the number of people, stomp off home and let it ruin my day. But on that day I put my headphones on, found a white noise track on my phone, and carried on looking at the exhibition. 

    I’m now in the wonderful world of “deconstructing the mask” and trying to work out who the “real me” is. Long way to go but good to have a resource like this where you know there are others going through similar things. 

  • I was assessed last Xmas and received the confirmed dx in early January. I found it incredibly illuminating and helpful, though not without challenges too. It’s main consequences are around my interactions with the NHS itself, armed with the dx, the report and attached suggestions for reasonable adjustments the comms with both my mental health team and gp surgery have improved out of all recognition. It wasn’t an emotional thing for me tbh, hugely empowering and validating, but as I suggested there’s been people and organisations who haven’t and probably won’t engage with me constructively, but that’s their loss.  All the best xxx

  • Haha, yeah.. You know it’s well documented in AS literature that difference is met with intrigue in primary school, it is when they move up to secondary school that peculiar elements are shunned, because they cannot conform to the status quo.  
    When AS kids get to high school, that is usually when the Stress and Mood Disorders set in, and they go into ‘hermit’ or ‘rebel’ mode and harm their development.

    Which is why I recommend, that you take as many low-end opportunities to expose yourself to differing views as possible (and become competent), before reintroducing yourself to the typical world in all your unmasked and supported glory..Sweat smile

  • I'm glad things have been better for you. I currently suffer with the same, and am hoping they will get more manageable too. Thank you! 

  • Its been 8 months since my diagnosis iam 54 years old and Medically retired . I was formerly constantly diagnosed with stress disorders and depression . the first thing that went was depression iam no longer depressed about actions and behaviours from my past . stress and Anxiety are the same but becoming more managable .

    As for telling your boss I believe we the Neuro Diverse have a place in society so i would . 

    But thats me Iam not in that position .

    I hope you find your answers . or come back to ask more questions ..  

  • the typical world is little prepared to embrace the atypical.  

    I have never thought about this until now, but it is so true. On the flip side of that, I work with 4-5 year old children, and they are so accepting of everyone and everything. If some children are a bit different to them due to special needs, they see no difference at all. It's quite beautiful. It's such a shame that so many people grow to be so ignorant. 

  • Ha.. Good for you deserve good conversation and here you tend to get it!

    As far as post-diagnosis goes: I was ecstatic in the days following, but I’ve found you have to be careful to manage your expectation, as the resources can be lacking sometimes (even though it is getting better all the time). 

    As far as disclosure goes, it is worth letting the dust settle first I think, the typical world is little prepared to embrace the atypical.  
    That’s is not to say that your Boss will not be ecstatic. But I would work from: close relations and close friends, to distant relations and friends, to work and community (if you want to disclose at all). 

    As you say, you are in a trusted place for Autism conversation, so don’t feel as if you have to tell everyone straight away.  
    It is not uncommon to encounter a despairing-feeling if you encounter stumbling blocks, so feel free to feel out your ‘new’ life-long condition to your hearts content here, you will always find kinship and support here when you need it..:)