Post Diagnosis mourning

I got diagnosed with Autism yesterday.

I hoped I would feel relieved at an explanation, at understanding why things have never "clicked".

Thing is, I don't feel relieved, I feel a lot of sorrow for things that have happened or may have happened.

I've been in the same relationship for nearly nine years now. I'm able to talk to my wife about it, she understands.

My head however has latched onto my previous relationship, who at the time I really deeply thought was "the one", of course she wasn't, it was a bad relationship that ended badly that left me a mess for a while.

But now, I think for my part in that relationship and others, particularly the night we finally broke up, and I realise that I was having a meltdown, and there were times before where I was melting down and I remember the extreme guilt and remorse I had for my behaviour. I remember the times I've had what I think are meltdowns to my wife, and I hate it. Somehow it was easier thinking it was a personal flaw rather than my brain functions being different as that removes any chance of me having not done that.

I really wish I could say sorry to me ex. I lost a lot of people I cared about because of it. Things I wish I could take back, or explain. I can't. I can never explain that when I said I felt terrible, that I wasn't exactly sure why I'd reacted so badly to something, I was telling the truth (something I'd convinced myself I wasn't).

  • Exactly. I took my follow-up appointment just to see what it was about and also because I thought it would help make things real. It was nice to talk to  someone who understands autism without it being in an enquiring, diagnostic setting.

    I was already at "what now" due to mid life, kids left home etc and this gave me another form of "what now" to add onto it, and yes, I'm exhausted too. Tired of life almost, which is & has been scary.

  • I am exactly at what now. I had immediate rellief which lasted over a week and was great. Then a few things happened - difficult interactions with people, sensory overload a couple of days in a row - and I realised that the diagnosis, whilst it has given me  (on a good day) compassion towards myself, has not made all the things I find difficult go away. So now I'm thinking well what now? I have been offered a follow up appointment with the diagnosis team but I don't know what I'd use it for so haven't booked it and don't know if I will or not - probably not - I've also started reading so so many books on autism that I just feel bewildered. So yes.... what now indeed? Other than frankly I'm exhausted. 

  • Hi An0therMichael, I was diagnosed this summer at age 52. I'm divorced and remarried.

    Like you I was expecting huge relief, and did get some but not as dramatic as I expected, and then of course comes the unpicking of the previous life and some sense of loss that you can never be who you thought you were (of course you *can* be someone equally as "good" if not better :-) ) and part of this is mulling over all the things that you might have done differently if you had known, and how you might have hurt others (and yourself) less.

    It is all part of the process. There is a great book called the Nine Stages of Autism which is quite helpful in explaining this journey if you like reading in depth about stuff.

    There's a lot of us on here asking ourselves "what now?"

  • I had mixed feelings after my diagnosis.

    I was pleased that I now had official recognition as to the cause of many of my problems.  But I also had feelings as to what might have been, that if help had been available how I might have been able to build my life in a better way, and also if I had not been autistic how much better might things have been.

    I think this is a natural thing.  It does take a long time to come to terms with things. I am what I am, and nothing changes that. We are born autistic, it permeates our lives in so many ways, it affects our thought patterns and how we are perceived by others.  We have limitations that is true but there are things we can do that are very positive.  But we cannot go back to that far away place called the past we visited long ago.  We may be able to learn things, and autism means we often dwell far too long churning things over.   I find it so very difficult to let things go and shudder at things that happened years, nay decades, ago.  But these things cannot be changed. 

    I do not keep my autism secret from anyone with whom I have more than a passing acquaintance with.   By letting others know it helps them understand that I have problems, even though I doubt whether most NTs really understand.  But it helps them understand that my abruptness may not be conscious, that sometimes I get confused, that I don't socialise very well, that sometimes I need a quiet space.  And I can get on with my life now, not perfect by any means but with support and understanding from some people at least.