Post Diagnosis Blues

This is a bit of a delayed reaction as I was actually diagnosed last December. I thought that I’d managed to avoid being too emotionally ‘affected’ by the diagnosis. However, I’ve had a bit of a vulnerable feeling creeping up on me for the past couple of weeks and it’s hit me full thwack today! I’m struggling with how autism makes me and I’m struggling with how the combined effect of brain injury plus autism makes me. I feel like the most stupid person in the world right now, someone who just goes through life blindly trusting people, always trying to see the best in people, never able to see when people are just playing me. I usually always try to keep positive and upbeat but I’m just feeling really overwhelmed by how socially naive my dual neurological diagnosis makes me. 

Parents
  • I hope you're feeling more like yourself now Kitsun. I'm learning so much from reading about people's experiences on this forum from validation about my own feelings of my journey so far to posts similar to yours: what the future could potentially hold. Thank you for sharing 

    Adult diagnosis seems to go like this:

    • Live a life feeling like "something's not quite right here..."
    • Hit rock bottom, discover autism
    • Eureka! That's me! This explains EVERYTHING
    • I'll pursue a diagnosis (it takes how long?! It's cost how much to go private?!)
    • Cycle with depression, am I really autistic? Am I finding excuses?
    • Yes I am
    • No I'm not (repeat!!)

    This is my journey so far (today I'm feeling like a fraudster again... I've had a very unusual week though so I'm running on fumes at this point)

  • Thank you I am feeling better now. I seem to manage to have these ‘acute anxiety’ episodes since diagnosis that can feel quite extreme but only last 2/3 days. Now feeling a bit silly about being quite so public about it but I’m also really grateful to a few friends on here who have been amazingly supportive Slight smile

    I think you sum up the adult diagnosis journey very well. It’s certainly fraught with very many difficulties and hurdles! Have you been referred for an assessment?

    What has happened this week to make it unusual? Sorry to hear that you’re running on fumes!

Reply
  • Thank you I am feeling better now. I seem to manage to have these ‘acute anxiety’ episodes since diagnosis that can feel quite extreme but only last 2/3 days. Now feeling a bit silly about being quite so public about it but I’m also really grateful to a few friends on here who have been amazingly supportive Slight smile

    I think you sum up the adult diagnosis journey very well. It’s certainly fraught with very many difficulties and hurdles! Have you been referred for an assessment?

    What has happened this week to make it unusual? Sorry to hear that you’re running on fumes!

Children
  • Aw! It seems that you made a fantastic job of spoiling your partner for her birthday. I imagine that she must have been really happy?

    I also have 3 children so I know how difficult it is to get time to yourself! Even once the litluns are asleep I still have my eldest asking me to do things! 

    Kids are a fabulous diversion activity. My youngest who's 2 is the best for this, she has global developmental delay so I have to trail her everywhere which saves me from having to attempt polite chit chat with other parents that I don't know. 

    I'm glad that you got to wind down in the evening!

    I hope the sports day went well?

    The sun was shining, way too much!! This morning at Nature tots (play group at the local nature reserve) was good as it's in the woods under shade but this afternoon trying to put together a trampoline in the raging sunlight was not so good! I gave up i the end and have deferred it until tomorrow morning before it gets too hot!

  • We like to keep ourselves to ourselves so I took the day off, picked up some balloons I had made the night before, took her out to her favourite place for lunch (kept it a secret) and had flowers delivered for when she got back (as well as all the presents!). It was a nice day - we rarely get time together like that with 3 kids!

    I tend to preoccupy myself with amusing my children, good diversionary tactic and makes me look like I'm busy

    This is what I did in the end! I found a quieter area and played with my boy and his little friend with all the water stuff! Re the ex: we can communicate over text but when we're together we either talk through our boy to each other, and refer to each other as mommy or daddy, or we just don't speak. I'm fine with that by the way!!

    I very much got to wind down last night, thank you :) 

    I have another sports day to look forward to this morning for my littlest and then I finish work early on Friday's to pick my other boy up from nursery :) 

    The sun is shining, have a great day!

  • It's good that you're on the waiting list. I had a 6 month wait but 6-9 months is good, in some areas it's 2-3 years!!

    It seems as though you've had a lot on! What did you organise for your partner's 30th? It's good that she appears to have liked it. Breaks from routine can be a pain! School events can be tiring, do you know any of the other parents? If I'm at a school event and there are no other parents that I would talk with there then I tend to preoccupy myself with amusing my children, good diversionary tactic and makes me look like I'm busy :-) Dealing with your ex-wife doesn't seem like too much fun! Is she civilised when you have to attend school events together? Maybe you could get your child to show you their work or do an activity with them while ex-wife talks with the teacher? I hope you manage to wind down while having alone time on your PC this evening?

  • I'm on the waiting list for my assessment. The waiting list is 6-9 months which isn't too bad, it was just getting to that point that dragged on...

    I've had sports days to go to, primary school induction meetings and taster sessions, my partners 30th birthday to organise for yesterday (i did good apparently!). So it's nice stuff for the majority, I just have to break routine a lot, have annual leave from work and be more social than usual. The school stuff wears me out though, I don't fit in with other parents at all and it makes me feel weirdly uncomfortable around my own child as daft as that sounds. Throw in the fact my ex wife is there being all loud and in your face... I tend to retire to the corners and keep myself to myself looking around at the various activities they have lined up for the children. My head draws a blank because I know I should be asking the teachers questions...which leaves me with a feeling of guilt. 

    I've already booked in some alone time on my PC when I get home tonight! She knows how much it's taken it out of me and she's thanked me (although I'm not entirely sure what for or that I need thanking, I'd do anything for her).