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Awaiting assessment but learning a lot

BristolSteve

Hi everyone

Thought I'd say hi as I'm new to the group, 42, male. I'm currently awaiting a formal assessment following a referral to BASS from my GP. But upon discovery that I may be on the spectrum my eyes have been opened wide. Until I get a formal assessment it's difficult not to jump the gun and run with it but the more I read from websites and particularly testimonies from this forum, the more I can't believe that it has taken 42 years for someone to even think this about me. It feels like the signs were obvious, and actually I'm annoyed that healthcare professionals and therapists have always treated the symptoms rather than consider the possibility that there might be a deeper cause - I've been in and out of therapy since my early 20s and had depression and anxiety since I was 9. Anyway, I won't delve into that now but I have 2 questions I was wondering if people could comment on please?

First one is does anyone know how long BASS take to get back to you with an assessment appointment? I was told it could be 12 months but some people in this forum have waited a lot longer by the sounds of it.

Secondly is a more general query about how people deal with 'rewriting' their history once being diagnosed. My brain is going 100mph looking at the whole of my past through different eyes and actually realising that certain things did or didn't happen because of the possibility of being on the spectrum. Friendships, relationships, life choices, emotions, all suddenly look very different when viewed from this angle. It's an odd mixture of terrifying, disappointing, sadness, relief, and confusion and whilst trying not to let it take over my thoughts it's very difficult. You get reminded of something and all of a sudden you look at it and go "I wonder if it happened like that or I reacted in that way because I'm on the spectrum". Does post-diagnosis care help you understand and deal with these things?

Anyway, thanks for taking the time to read this and I'd appreciate anyone's thoughts.

Steve

  • Hi Steve, The Big Bang moment is a rollercoaster of emotions. I’m in my 50’s and the notion of autism only came to me in December. You are angry, sad and lost all at the same time. You are right that memories of every disaster in your life come to the surface and have to be processed. To realise that most if not all weren’t your fault is a strange feeling. I’ve watched about every YouTube video there is and have been reading books by autistic people. It does all finally make sense. My wife has been a nhs nurse for most of her life and sees a lot of autistic people, she never picked up on me. Masking started in pre school, in the end you just become this other person. The arguments over me not going to social occasions ,being a fussy eater, not wanting friends and much more have stopped. She really does now  see the autistic me and what can trigger my meltdowns or shutdowns. No more days of what she called radio silence, I would be non verbal for days at the thought of going somewhere.

    I think to have known say 10 years ago would have been helpful, to have been singled out in the 1970’s would have been hell. There is a Chanel 4 program on catch up called Am I Autistic?, two people are going through diagnosis and given a task to do, in the middle of the task it’s altered, I could actually feel their anxiety and confusion at the problem having to be rethought in the middle of it.

    Im currently waiting for a diagnosis, my area has a waiting time of about 2 years. Im seriously thinking of going private but it is a big price tag of £1800 which I can’t really afford. To me a diagnosis will help to bring closure, I think the way our brains are wired is that we need definite answers. I’m not looking for a cure, I just want to re engage with the real me and stop wondering. My thoughts have been that if I have 25 good years left then they have got to count.  
    Good luck with your journey.

  • I think mixed emotions are a standard response to an adult diagnosis, particularly a very late one. I realised, through my daughter being alerted to her possible autism by her CBT therapist, that I might be autistic, and then had it confirmed by diagnosis at 59. My main reaction was one of profound relief, I had a reason for my strange sensory issues, my difficulties and limitations in social interactions and my almost constant heightened levels of anxiety. I also had regret about opportunities missed in the past, due to my lack of self-knowledge. While an earlier diagnosis would have been very useful, in retrospect, I am relieved that I was not diagnosed in childhood, as I feel that without my struggles to fit into the rough and tumble of ordinary school life I would not have developed the resilience that I have always had. 

  • Hi! Welcome to the forum fellow BASS waiter.

    I was referred in December 2020. I got my triage appointment in late July 2021 and was originally told it would be this February to April but after having followed up I've been told my final assessment won't be until at least July 2022. It's a long time. If you get through it in a year then they will have massively ramped up their game, which would be great but I wouldn't count on it. Who told you it would be 12 months? BASS or your GP? 

    Some tips to know about BASS while I'm here:

    - They generally like to call you out of nowhere to arrange appointments for within a couple of weeks. It sucks, it's really shocking and for me was very distressing. Just a warning for the future if unexpected stuff like that throws you. 

    - They won't contact you unless it's about an appointment. Not to keep you updated on how the queue is looking, not to tell you that as you've changed gp to a new area you've been discharged ( a friend of mine went to uni and experienced this ), nor to tell you that there is an at least 4 month delay on what you were told at your triage appointment. I recommend checking in every 6 to 9 months just to ask how things are looking, and make sure that they still remember you. They have an active email account that you can use if you don't like phone calls, but their admin staff are apparently incredibly understaffed and overworked so it is taking about a week or more to reply to emails, but that isn't too bad. 

    Some research is a good thing, and I know the rabbit hole is easy to fall down. Do try not to get too obsessed (easier said than done I'm aware), combined with the long, long wait it didn't do great stuff to my productivity or my mental health. But yeah the complete reassessing of your entire life is a weird time to go through.