Little point in going for an official diagnosis?

Went over history with mental health nurse today. Mentioned  issue of autistic traits. She said she could certainly get me an assessment but after that ,if diagnosed, there wasn't much help for adults in the area.

  • Hi firemonkey,

    I think it's worth getting a diagnosis. If nothing else, it will help to clarify any confusion or doubt about why you feel the way you do, and that's always a good thing!x

    Much love <3

  • I was in two minds about it, but reading your replies, I can't put it off. 

  • Thanks. The realisations. Some of the pieces finally falling into place. it's mind blowing in lots of ways.

  • I’m so pleased about that. A friend of mine was told by the nurse that he is most likely on the spectrum but that there wasn’t really any point in going for the diagnosis. He hasn’t got that burning desire to know, he has a lovely partner, probably on the spectrum herself, and they have a nice little life going for them. So for him, his difficulties don’t cause him any extra anxiety, he has learned to live with them and he has created a nice little life for himself. For me, it was different. I needed to know. I’m sure I can speak for all of us when I say we’re all behind you. Any fear or anxiety I experienced throughout the process was worth it and I had a really easy smooth time through the assessment process from start to finish. It wasn’t perfect, but it wasn’t as difficult as I thought it would be and as soon as I had been to see my gp and I asked for the referral to the autism team, I was so proud of myself. I felt like I had honoured myself for the first time in my life. I felt like I was finally standing up for myself. And that feeling alone was worth pushing through the fear. It felt like the diagnosis almost didn’t matter at that point. It takes a hell of a lot of courage but it is so rewarding. Best wishes with it and don’t forget, we’re all here for you. 

  • Good luck x wishing you all the best x

  • You have given me the courage to seek diagnosis. Thank you. 

  • I understand your fears firemonkey, I was the same. However, my need to know was greater than my fears, so although my need to know didn’t take away the fears, it did mean that it overrided them. I was certain I was on the spectrum but of course didn’t know how I would fair on the assessment. I didn’t spend too much time thinking about this, I just told myself that if it came back negative, I would either get a second opinion or it might on the other hand reveal something else. I decided I would just go in there, be myself and trust that one way or another I would be closer to finding out what was going on with me.

    Like Starbuck, it has been a roller coaster for me post diagnosis, which I wasn’t expecting. I thought I had done all my grieving etc in the 18 months prior to the diagnosis, but getting the diagnosis has put me on a major roller coaster of emotions but I don’t regret it one bit. Getting the diagnosis saved me and now it’s giving me an opportunity to create a life that works for me and my differences rather than me trying to fit in with societies expectations and it gives me those all important answers to why I am the way I am. 

    Don’t let the fears get in your way. 

  • I have a stepdaughter I may be able to talk to. However I post about my thoughts re it on Facebook and she has never offered any thoughts.

    I suspect although I have autistic traits I am closer to NVLD. NVLD is scarcely recognised in the UK.
    As far I am aware it is not something the NHS deals with. Mention NVLD to most mh professionals and you get met with a "WTF are you talking about ?" expression.

  • The other way of looking at it is if it turns out that you do not get diagnosed with ASD, there may be something else that is highlighted that will provide you with answers either way.  You seem to acknowledge that something isn't right whether you have ASD or not, so for that reason it might be worth seeking answers to try and get the help and support you need.  Even if you are diagnosed with something else, it provides medical experts with the right information to begin assisting you.  I have found this to be the most positive aspect, as I am now listened to by my GP and he recognises my struggles as a result, which is helping him to try and find the right support for me.  In the past I have just been fobbed off by other GPs.  The downside is that help and support is limited as my GP is finding out, but either way he has not given up and that in itself gives me hope.

    If you feel there is more going on and you need to know what that is and how to manage it better, then a diagnosis might be worthwhile.  It's a scary and lengthy process, but I suppose you need to decide whether you can continue to carry on as you are currently, or whether looking into more information and possible support is something that you actually need.

    Do you have anyone close to you that you can confide in on the matter to help you make a decision?  I find running scenarios past my partner helps me see the wood from the trees when I am unable to make big decisions.

  • I guess I'm scared of what may be an all or nothing throw of the dice. That they decide I'm not ASD(which would be fair enough) but in doing so it shuts down any attempt to find out why and how I'm neurodiverse, and the difficulties I have.
    That I'm basically left having shot my bolt with no other bolts to shoot.

  • Hi firemonkey.

    It sounds like you are looking for answers and a diagnosis of ASD or anything else for that matter will provide that.  I was wrongly diagnosed for years and knew that there was something more that everyone was missing.

    I am glad of my diagnosis as it had helped to reassure me that I wasn't going insane when I thought psychiatrists were not listening too me and fobbing me off with medication that was making me worse.  There was an underlying condition and as such I am relieved that my hypersensitivity to medication has been documented and I am not seen as being dismissive in help when I refuse medication.

    We all have our own reasons for seeking a diagnosis and it sounds like you already have yours, you are just unsure of the outcome.  I can understand your trepidation, as my own personal experience of the mental health sector has not been great in previous years, but I have found my diagnosis has provided me with a voice to be listened by my GP (some are still questionable and the processes with the mental health services are still incredibly bureaucratic, but a diagnosis won't change that!).

    In the end to get over my fear of requesting a diagnosis, I took time to weigh up the pros and cons of whether I sought a diagnosis or not.  In the end I decided I didn't have a lot to lose as I needed support, but need the right diagnosis to ensure any future treatment was fit for purpose.

    Post-diagnosis is a bit of an emotional rollercoaster as well as I am finding out, but others have said that this is normal and that it takes time to come to terms with things.

    I hope you get what you are looking for, either way.

  • Thanks both of you for replying. The thing is I'm as certain as can be I'm neurodiverse ,but less certain that I am on the spectrum. Having said that I do score above the threshold on various tests online for asd. I see myself as probably being more nvld(there is an ongoing debate whether that belongs on the spectrum) . My primary problem is socially. I have always struggled with social interaction. I am reckoned to have very poor social skills. I recently found what I'd always thought of as a friend from prep school on twitter. He blocked me. Over 60 years I have had less than a handful of friends.

    I also have never worked. As well as the ASD/NVLD there is probable dyspraxia and learning difficulties I am one of those who fits a 'spiky' profile with much higher verbal than non verbal ability.

    It would be good to get official confirmation that there is a reason why I am as I am, if only to kick years of being accused of being awkward/demanding/troublesome/passive aggressive etc into touch . And yet I am scared that even that won't happen. I'll go for an assessment and be told it all relates to my psychiatric diagnosis. I've spent so many years with my problems being ignored, because everything has been seem through the filter of a psych diagnosis, that I'm scared any assessment will just end up going down that line, although I'm intelligent enough to know for certain there has always been more going on.

  • I second everything Lonewarrior wrote. Getting the diagnosis was important to me, even though I didn’t doubt it,  I must have had a bit of doubt or something as I went for the diagnosis and it’s been one hell of a roller coaster since. From elation to despair, coupled with exhaustion although that was there prior to diagnosis. 

    It’s such a personal thing and I don’t blame anyone for not going for it. And yes, with or without a diagnosis we are all accepted here. Don’t let the nurses opinions sway you, they haven’t got it and you can get help. I’ve managed to get some but it’s not through the autism team, it’s through the local authority wellbeing team but I’ve learned more from this site and got more suppprt from here than anywhere else. It feels like my lifeline. 

    Sometimes we’re too tired to comment or even come on here but yes, we definitely care for each other and no post is crap but I understand that way of thinking. Get back to us if you have any more questions. 

  • Hi there, if it is important for you to know then go for the assessment, Each of us here have varied reasons to want or not want the diagnosis, regardless of us sharing common traits and an understanding of each other, we are all different, I need validation for my life, my struggles, an explanation,

     I also feel able now to be myself more, if I get a final assessment it no doubt will put me back on the roller coaster of emotions. I have been through every emotion since my epiphany, total joy st finally meeting others like myself, to feeling so angry and depressed st the lack of help or understanding for fifty plus years, 

     please follow your heart.

     If you need help and support then it is out there, you have to push for it as all resources across the board are at a breaking point. 

    I am sorry if you have been posting before and I haven’t remembered but my memory has upissues, 

     we all care so much for each of us, we don’t always know what to say, but we do care and help wherever and whenever we can. 

     Can I offer a virtual hug?  I want to hug and say,” I hear you and I care” () 

  • I'm guessing from the lack of response that people agree with me. Well that or I post crap no one is interested in.