• Replies 15 replies
  • Subscribers 94 subscribers
  • Views 1218 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

31 y/o and never been diagnosed, and I'm scared to be.

Echo

Hi everyone! 

What the title says really. I'm 31 years old (she/her), never had a diagnosis but the older I get, the more I think I should at least try and get one.

I know it's not a necessity, but there's so many little things that just... make sense. And I don't know whether it'd make me feel better or worse if I got told I have autism.

According to my mother, when I was younger, I showed signs but she refused to get me diagnosed... for reasons she never really explained. Probably just scared to attach that kind of label to me, who knows. I should add that I do have a very good relationship with my mother though.

The things that seem to 'make sense' to me -

- I have keen interests in very niche/specific topics. This was more prominent when I was younger; I couldn't have interests, I had obsessions. And when I say specific I mean like, certain characters from movies, shows or games. This still happens now, just less frequently/obsessively. I think some people call their obsessions with characters their 'comfort characters'?

- Socially, I know how to 'act normal' but it requires a lot of what I call 'social exhaustion' - I can't even spend 8 hours in the office without feeling drained afterwards, and going home and feeling like I can finally act like 'me' again. 

- My partner calls it OCD, but I'm unsure if it is - I have to do some things a very specific way, and if I don't do it that way, I've 'messed it up' and have to start again or quit entirely. A good example is when I'm playing certain videos games I cannot progress in a certain area until I've 100% completed everything that's there first. If I rush myself to get to the next bit, it's extremely likely I'll just stop playing that game altogether. 

- I quite simply do not understand sarcasm from strangers and people I don't know well. 

- I hate and I mean HATE being the centre of attention in any possible scenario. I believe this stems from when I was at school and had a legitimate fear of standing and talking in front of the class. During team meetings at work now, if I have to speak even for a moment and the focus is on me, I'll flush red/get embarrassed and feel very overwhelmed. 

- I constantly have to remind myself to ask other people how they are doing, and not always talk about myself. It's not that I don't care about other people because I absolutely do, I just struggle knowing what to say when others talk about themselves without comparing it to something about me/my life. 

- I love my friends but I would 100% prefer to be alone any day.

- Routine. Probably the most important thing in my life. If anything breaks my routine, even for a moment, day is ruined. You have to make plans with me at least a week or so in advance or it's not happening.

There's probably more, but those are the key features about myself that I notice the most or have been told about by my partner or friends. 

So... is it actually worth getting a diagnosis at this age? Any other adults here who got diagnosed 'late', and did it help you? I'm not even sure *how* to get diagnosed. I'm not familiar with my GP as I recently moved and haven't seen them in person yet, and only registered with them about a month ago. 

Any kind comments are appreciated :) 

  • in reply to battybats

    Thank you Batty, I've just re-visted the site of my assessors (three years ago now). My assessment would not be recognised by the NHS.  I'm actually seeing the NHS Older Persons' MH team soon for a memory test. Maybe I'll tell them, maybe i won't.....

    Ben

  • the issue is if you need help that diagnosis makes very little difference, all i hear from CMHT, GP and whatever is oh we dont really offer services for ASD etc etc, like great thats perfect.

  • I've just been diagnosed. I'm 43. It's a huge relief because I finally understand myself and can ask for the right help. I wish I'd realised sooner.

    If you feel you should go for diagnosis, do it. I don't have a regular GP in my practice but they listened to me and sent me an initial test. 

  • Hi Echo!

    I was diagnosed in March this year, aged 35. I absolutely felt it was worth it- knowing for sure that I'm autistic has been a huge relief, and I've made a lot more progress in therapy for anxiety and trauma since then because I now have a more accurate picture of who I am and what has happened to me in my life.

    I think for many people, just realising they're autistic on their own is enough, especially if they have relatively low support needs and don't need to access any special services or benefits. For me though, it was important to have that external confirmation, because I'd experienced a lot of medical gaslighting over this and my other disabilities in the past. I needed to prove to myself that I wasn't imagining it.

    A word of warning though- it can take a long time to get diagnosed via the NHS, and the GPs etc you have to go through to get a referral don't always understand/believe that grown women can be autistic. And private diagnosis is of course expensive. If you do decide to seek diagnosis, you might want to look into Right to Choose.

  • in reply to Ben

    Depends who does your assessment. The private assessment centre who did mine stated clearly on their website that their diagnoses would be recognised by the NHS, as long as the client gave consent for the information to be shared.

  • you can try but be warned it may take 8 years of waiting which might dishearten you anyway given how long that time is.

    but its better to have some form of protection incase. i mean its all positives.... you dont have to tell anyone when you get it or have it out there, but you can use it when you need to incase of protection against stuff like a dodgy employer. so its useful to get it done even if it takes half of your life to get seen.

    and parents can not get you seen to on these things because they think you will be treated differently... and then in being treated differently in that developmental phase thats what causes you to then be worse and be openly symptomatic and problematic... basically a good parent would want you to be given the same opportunity and upbringing as other kids so that you turn out and fit in with them and society so you can function. i believe this is the difference between functioning and none functioning... the none functioning would have been diagnosed early then taken out of schools treated differently, put in a special school been given basic worse education and so wont grow develop and learn as good which then would make them none functional later in life. i believe parents who dont diagnose their kids knew this and didnt diagnose because they wanted their kid to develope and be functioning.

  • in reply to Martin

    I wasn't aware of that, I'd always assumed that they just wouldn't recognise it.

    Ben

  • in reply to Martin

    Indeed.....but I presume/believe that would not be a choice if you went through the NHS process?

  • in reply to Number

    If you have a private diagnosis, you can choose whether or not it is added to your NHS medical records.

  • Echo, I had a private assessment aged 67, and I've not looked back; I had read-up on autism and knew I strongly identified with it, so sought out a professional opinion. 

    There is no treatment or cure, but the increased knowledge and understanding I now have has brought me peace of mind. My only regret is that I didn't do it sooner.

    Of course, it might not be the right decision for everyone; I can only tell you of my experience.

    Ben

  • in reply to Martin
    Martin said:
    you are still in complete control of whom you inform,

    I believe that, certainly if done through the NHS, the diagnosis is added to your medical record.......so you don't have complete control of who IS informed or who CAN inform themselves about your status?

    I hope someone can confirm or deny my belief as stated.

    Just to be clear, I'm not suggesting that it is an "issue" to have something on your medical records, just that (if this does happen), ANY people with access to your medical records can know your diagnosis.....whether you want them to know, or not.

    Forgive me if this is overly pedantic...a "strong flavour" trait of mine, I'm afraid....at times!

  • Echo said:
    So... is it actually worth getting a diagnosis at this age?

    Hello Echo.

    I've been on here for a while now, and this question seems to be raised and engaged with every 3-4 months in some depth.

    I would strongly recommend using the implausibly poor "search" functions on this forum to find these old threads.  It won't be as easy as you might think.....it is TRULY implausibly poor.....and yet SO worth the effort, in my opinion.

    I always worry when somebody VERY new, or "newish", raises this type of question....but then gets poor engagement with the thread....they might think that this place is rather dead....but it is more normally that the topic has been "talked out" with the existing cohort of regular contributors.

    Who knows, maybe we are due the 3-4 month "blow-out" of the topic......I wouldn't know when the last time was.....I have "issues" with time.

    Anyway, nice to see you here.  Hope you stick around and browse some.

    Kind regards

    Number

  • I was diagnosed at 59 years of age. I wanted the diagnosis, I had come to the firm conclusion that I was autistic beforehand, for the sake of validation and completion. Even if you are diagnosed, you are still in complete control of whom you inform, and you can accept or reject labelling to whatever degree suits you.

  • Heya I'm newly diagnosed and ur anxiety with the idea of it is more than understandable cause it's a big step in to the unknown and u r bound to be feeling nervous and that's totally fine.

    There's no rush either tho so take ur time and read up on autism and see if u think this could be u. When I was waiting for my assessment I did so much reading about autism and the more I did the more I felt for sure this was me.

    Whatever u decide to do I hope ur happy and it all works out.

  • Yeah, go for it! I was diagnosed at 37 and it's helped make a big difference in my life. That's if you feel the diagnosis would help you understand yourself.

    If you feel you're functioning fine in life, it's not exactly 100% necessary.

    I wouldn't worry about lack of familiarity with your GP. It's their job to send you details off and you'll be placed in the queue. If you decide to do that, just be prepared to wait a long while. Mine took a half and a half until I was up for assessment and I had to chase it up a lot.