How do adults feel after their diagnosis?

Hi everyone.

I am new to the forum and have what I hope will be the third and final part of my assessment at the end of next week.

I was teased by colleagues at work about being autistic about 10 years ago (I am now 45), I read up on Aspergers on Wikipedia and it was like reading my life story.  I never took this any further though.  My wife did some training last year on working with people with autism, and identified that I had many of the traits.  We did a simple 10 question test (10/10), then a 50 question test (47/50), so knew if was something to investigate.  I have had an initial mental health type assessment, the first part proper of the autism assessment, and have the next one next week.

My wife has been so supportive and so have my children (aged 11 and 8) who we felt we needed to tell about the assessment.  However on speaking to my father and sister (my mum is sadly no longer with us), they (and I appreciate it may have been a shock), pretty much just didn't believe me.  When I went through the questionnaire with my dad he pretty much just said no to every question, although when I explained how I felt on some of the questions, his replies were that he felt the same (but that he was not autistic), or that "loads of people feel that way".  I tried to explain that it was the number of situations that I looked at in that way, and the links between them that pointed towards me being autistic. 

So I am wondering in this period before the next assessment, how others felt before and after?  I am hoping that getting the diagnosis will be a positive thing, and will explain a lot of the reasons I feel and act the way I do, but I have also read about people feeling a sort of grief that they only found out so late in life.  I wouldn't change my situation for anything, but I can understand I may feel something when I look back at life perhaps being more difficult than it needed to be?

Would appreciate it anyone would take the time to help me through this period, with their own experiences, thanks.

Parents
  • Hi,

    I was diagnosed 3 years ago, at the age of 56.  Overwhelmingly, the first couple of years were positive.  I had the validation I wanted.  My life made sense to me at last.  And I could tell the world about it.  Reception has been mixed.  Most people have been fine and accepting.  My mother certainly embraced it and was always there for me, as she always had been.  My brother shut down on it and distanced himself further.  I've tried discussing it with him, but it's a waste of breath.  Still... it's no big loss, really.  He's small-minded, parochial, self-satisfied.  Lost in his own way, perhaps.

    For the last 6 or 8 months, things have turned a bit.  I won't say the 'honeymoon period' is over because I think I'll work through things and return to positivity.  But the tsunami wave hit me as I started to look at my life and see all the ways in which my condition could have limited me or held me back.  I'm still not fully emotionally mature.  My relationships have all been disasters, and I've lost one person in particular who was quite dear to me, but whose heart I broke because I couldn't handle the marriage.  My education suffered because I found school so difficult - bullying, problems with focusing on lessons - and it took me many years to catch up.  I've always generally thought of myself as between 10 and 15 years behind everyone else in so many ways.  Although I'm clearly bright, and eventually managed to get a degree, I've generally stuck to low-wage and often very menial jobs, well below my potential capabilities.  My main obsession, writing, has taken precedence over everything else - relationships, friendships, work - and I've made many sacrifices for it for hardly anything in return.  Whatever talent I have with it is, I think, checked by a certain imaginative inflexibility.  I don't really know how to stretch myself.  My lack of proper understanding of the minutiae of human relationships and interactions may also be a limiting factor. 

    Throughout their lives, I stayed close to my parents - especially my mother, who was the most important human being on earth to me.  She understood me like no one else.  She was the only person I could go to.  When she passed away last year, I felt cut adrift - which is pretty much how I've been since.  This kind of coincides with the 'backlash'.  So maybe my current negativity about my condition and my life in general is closely bound up with the grieving process.  This staying close to them, too, has meant making other sacrifices, such as emigrating.  I've pretty much stayed put for most of my life - in a comfort zone that seems to be becoming increasingly uncomfortable in other ways.  I needed to be close to the main source of emotional and psychological support.  Now it's not there, I feel sometimes like I've used my life up for no good reason.  Within its limits, I've enjoyed it.  But there were so, so many other things out there all those years, waiting for me.  Great opportunities - and I turned them down.  I try hard not to live with regrets, but - especially in the light of what my diagnosis revealed to me - it isn't easy.  Maybe a certain ignorance is bliss.

    As I said, though... I'll work through it.  It's all work in progress.

  • Thanks MartianTom, I lost my mother 8 years ago, and I did emigrate to NZ soon after, but came back a year later, I think in some ways as I couldn't handle the changes once I'd made them.  To be honest, I'm still coming to terms with it, I still can't talk about it without getting upset, and this came up in one of my assessments, as I had to talk about childhood and explain she was no longer here.  Lucklily, my wife has been very supportive, and likes me for who I am, she sees my traits as positives, that make me who I am, but sometimes I feel a bit sorry for myself if I'm honest, and I worry I'm not always "present" for her and the kids, as I don't necessarily understand their needs

Reply
  • Thanks MartianTom, I lost my mother 8 years ago, and I did emigrate to NZ soon after, but came back a year later, I think in some ways as I couldn't handle the changes once I'd made them.  To be honest, I'm still coming to terms with it, I still can't talk about it without getting upset, and this came up in one of my assessments, as I had to talk about childhood and explain she was no longer here.  Lucklily, my wife has been very supportive, and likes me for who I am, she sees my traits as positives, that make me who I am, but sometimes I feel a bit sorry for myself if I'm honest, and I worry I'm not always "present" for her and the kids, as I don't necessarily understand their needs

Children
  • That's quite beautiful, and I think a lot of positivity comes through in your words.

  • I was at the final hurdle of emigrating to Canada... but turned it down because I simply couldn't countenance being 4,000 miles away if anything happened to mum - and I knew that my going would hasten her end, because we'd always been so close.  I cared for her full-time in her final 7 months.  That's one thing I'll never regret.  I was there for her when she needed it, just as she'd always been there for me.  It was a unique bond, and one I'll never find again.

    I'd always thought that when she finally went, I'd be truly adrift.  I'd half-planned to give up everything and just go off with a rucksack and see where the road took me.  Even if it took me to my death.  Curiously, though - and through an odd succession of events and circumstances - I got myself a rescue cat just a few months before mum's final illness.  She came with me to mum's and was a great source of pleasure for her, too.  And now... she's here with me.  And I've ended up with another tie.  I hate thinking that way because I love her like nothing else on earth now.  She's mine until the end, and she'll go wherever I go.  She's young, too, so she'll probably see me to the end of my life (if I make it to old age).  Another way of looking at it is that she may have just saved my life after all.