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Diagnosis confusion

Take5

Just wanted to ask if anyone is willing to share their experiences post diagnosis of autism? 
It’s been 5 days since it was confirmed for me and 8 days since my assessment. I’m now obsessed with gathering information about people post diagnosis experiencing doubt and trying to play down your own challenges? I was told the outcome on Thursday because of the terrible state I was in and that there was no doubt as they put it, why am I beating myself up like this. Although I am relieved to hear I’m neurodivergent my mind is all over the place and I’m unable to make sense of it all. I’m creating stories in my head about people’s reactions and overthinking what they will think of me. I wish I didn’t care but I obviously do. I’m actually getting on my own nerves now with these ongoing repetitive thoughts.

My wife doesn’t even know yet as I have gone through this process alone. Although I’m told I can be a little strange and not very sociable (among many other things) she flatly refused to talk about it a few years ago. She invalidates me constantly and for that reason I have not shared that I was even having an assessment. 

I feel really stuck and I’m unsure where I go from here, I understand it is very early days and this may take quite some time but it’s tough atm.

Thank you for listening 

Take5

  • in reply to Take5

    I'm sorry to hear its been so challenging for you. I'm aware that we should accept people for who they are and not expect them to change, but when you married eachother you promise to be there for eachother through the highs and lows, and I don't think its asking someone to change themselves to accommodate such a big life experience and ask for support. You do not sound very happy with your situation, and more just "putting up with it" which is sad. You deserve to be loved, cared and supported

  • in reply to JessOnTheSpectrum

    Please don’t apologise JessOnTheSpectrum I appreciate a direct approach. 
    Yes a partnership should be based on being supportive towards each other. My relationship is past the point of rescue and I don’t want someone to have to change themselves to accommodate me, let them be themselves and I can eventually move on and be myself without being shamed in front of others and my family. 
    I have avoided escape so far as it always felt very scary and was complicated. It’s always going to bet that so I am wasting time now and need to be stronger in order to carry this out. 

    I am in a very controlling relationship which has not been good for my health for many many years, I actually realise this now.

    Take care Jess

  • in reply to Damojo

    Yes I get that damo 

    My friend is adhd and bipolar so he’s pretty wired most the time. Those little comments and conversations we have firing things at each other feels supportive and makes me feel heard, he likes the real me and that’s an amazing thing. He has been hugely rejected by the neurotypical population and he is mostly surrounded by his own tribe, as he said to me your trusted people get smaller in numbers and and the ones that don’t understand you get proportionally bigger in numbers. 

    The comment your friend mentioned is a validation in itself, obviously if it’s communicated by the wrong person it has a whole new meaning. 

    I like my world too, my interests and things I enjoy look very mundane to typical people and I do get teased about them sometimes but they are my sanctuary where I can escape and lose all that chaos that’s buzzing around in my head for many hours. 

    Thanks for your reply 

  • in reply to Take5

    I once had a friend tell me, after I suggested yet another wild and wacky idea, "You're the weirdest f---er I ever met!" I took it as a compliment.

    Being normal must be SOOOO BORING!

  • I'm sorry to be so upfront but you need to be supported by your partner when you are going through such a difficult time. Of she cant deal with your struggles, perhaps its more detrimental to you to stay with her than it would be to leave

  • in reply to Damojo

    The term weirdo is perfectly acceptable for me. Me and my friend call it each other all the time! He is bipolar and ADHD as well. 

    Thank you for the advice 

  • Educate yourself on all things Autism. Listen to podcasts, read blogs, books, websites by and for Autistic people. There is a lot of good information out there that can help you feel like you're joining a community, rather than being singled out as a weirdo. (Are we allowed to use that word?) I've found this approach to be very helpful for me.

    There is a lot of good information here on NAS. Another site I particularly like is Reframing Autism, it is very clear, very positive and they even have a "Welcome Pack" (a big PDF) to help you get settled in to your diagnosis. The Thinking Person's Guide to Autism is good site, too, but maybe not the place to start.

    Regarding "people's reactions": you are under no obligation to tell anyone anything. There is no hurry. You've been Autistic all your life, so if you've waited this long, what's a few more weeks or months?

    Go easy on yourself. Take your time.

  • in reply to Iain

    Thank you for your reply. 
    I already have a therapist who is great and even prior to diagnosis she has been helpful in giving me some coping strategies, she has helped me to identify lots of issues as to why I have and continue to struggle.
    Social anxiety is the biggest thing I find challenging as well as keeping in touch and maintaining relationships. As I mentioned there is a huge communication problem between me and my partner which results in being bullied and controlled to some extent. A long time ago I may have considered couples counselling but this is no longer an option for me and I’m pretty sure we would be wasting both of our time as my partner refuses to see I struggle. I believe the way the relationship is suits her is okay as it is. I appreciate your perspective and agree I must jgive it more time and keep learning as much as I can. Think I e just masked for that long and been agreeable for that long that I have lost who I am and that’s hard for others to grasp. 

    Thank you once again 

    Take5

  • Take5 said:


    I feel really stuck and I’m unsure where I go from here

    I found it helped to look at it as understanding a fact about yourself, just like knowing your blood group or your IQ.

    It doesn't change anything but it does give you power now you know what it is.

    From the assessment I would expect them to have highlighted your main autistic traits so I would focus on learning about these rather than the huge range of research on neurodivergence. Treat it a bit like damage control where you work out what is causing you pain or problems then understand it to the point where you have positive techniques to use to mitigate the issue.

    For example if you struggle with eating foods that are not beige (a surprisingly common autistic issue) then don't stress about it. Find healthy options that meet your constraints and improve your diet this way.

    Do you struggle with stress / anxiety from social situations? Cut these down to a level you can cope with and spend a little time learning about the unspoken rules of socialisiation to help you read the room better and interact in ways that others expect. Small things that reduce the social mistakes and reduce stress.

    Lastly and most importantly I would recommend getting a psycotherapist with a good track record of helping autists and plan on 10-20 sessions with them over the next year. It will be around £50 a session so won't be cheap, but they can help in so many ways that makes them worth it.

    They will help you develop coping techniques for things you struggle with, can help you connect to emotions, can help you unpack old trauma that is still haunting you (you most likely will have this but don't realise) and can help answer questions you may be afraid to ask anyone else.

    That would be how I would deal with this, so feel free to consider or ignore it as you feel appropriate.