Published on 12, July, 2020
Hello,
I just got my formal diagnosis for Autism this morning at the age of 40.
I feel so mixed up and never felt more confused my life! I have a massive sense of relief, that now finally something explains why I struggle with things as much as I do and why I react to things in a certain way. I feel angry that no one (myself included) recognised it sooner, that I’ve struggled so much, even ending up hospitalised in a psychiatric ward, and no one there even considered autism as a diagnosis, that my parents never recognised it in me or my teachers. I feel scared about what this now means for the future, about whether to tell people, how I move forward from this. I feel numb. I feel sad that this is my life and resent the diagnosis. I feel like I want to shout it from the rooftops, and also tell not a soul. I feel like I need to research every single thing even more than I have already. I feel like celebrating and crying all at the same time.
I just wondered if this was a ‘normal’ response to getting a diagnosis? How did other people feel? What did you do next?
Thank you! Same for you, happy to chat at any time:)
Have been feeling similarly as was diagnosed last year aged 48.Found this by another late diagnosee which echoed my feelings: www.youtube.com/watch
I was diagnosed on Thursday , aged 31, and I’m really struggling with these feelings too. I keep having phases of being frustrated and ashamed of it and not wanting anyone to know, then I go through phases of thinking I can’t change it and maybe telling people would help. I work as a teacher and I’m back in work on Wednesday and I cannot decide whether I should tell my headteacher or not. I feel like I’m in the wrong job now. I’ve had years of cbt for anxiety and ocd and always had hope that my struggles would go away with cbt and medication but now knowing that it’s autism means it won’t ever go and that’s the point I’m really struggling with. I just don’t know what to do!
LucyLandRover said: but has since been updated to include all ages.
Thank goodness!!
Ben
Sadly it can be a battle just to get a diagnosis as I tried in my early thirties only to be told that autism is only diagnosed in children. This used to be the medical thought but has since been updated to include all ages.
Thank you. I don’t think I’d registered just how many people have late diagnoses. It feels comforting to know that this is a similar experience to others.
Hiya, yeah I totally get you on that! Everything feels so difficult doesn’t it. I do hope that things get a bit easier for you.
thanks for your reply. Yes emotional rollercoaster is exactly how it feels! I have spent hours researching, totally fixated on it, all consuming - but guess that’s an autistic trait! thanks for the links, I will have a look. yeah I haven’t even considered about the impact of dealing with other people’s responses to it all! I can imagine that would have a big affect on someone. thanks
Thanks for the good advice. You’re right, anything I do now I can’t take back. I have no idea of how anyone would react to it, so that is a whole other thing to consider!
Thankyou - yes overwhelmed is how I feel ALL the time!
Oh it is so good to hear that for you it has been entirely positive. That’s fantastic for you and your journey. I hope that once it all sinks in a bit more I can find more positives to the whole thing!
I can’t imagine how it must feel to be diagnosed at that age. I feel like everything I feel would be even more intensified. Im glad you now finally have answers for yourself. I think you’re right, to take my time and figure things out. My instant reaction feels like i need to do something now and act on it. But waiting and letting things maybe make more sense is a good plan. thank you
Hello Sloan,
I was diagnosed aged 38 and had similar experiences. The more I learn about autism, the more I embrace it! I would not change a thing. I wish you well on your journey of self discovery.
Hi :)
I was diagnosed late last year at the age of 27! I feel a lot of relief but and the same time I am struggling to find my place in a society that isn’t build for me :(
Welcome and congratulations on your diagnosis.
Everything you describe is a common reaction to being diagnosed. I have described the post diagnosis discovery journey many times as an emotional rollercoaster. You've certainly already been through a lot in one day!
For me the relief and elation lasted a lot longer (probably a few months) before the anger started to take over. Since then I have spent so much time researching every single thing.
Once you start to seek out content from the autistic community and learn about their lived experiences it starts to make much more sense than the pathological model of autism you'll have encountered during the diagnostic process.
These are a couple of good places to start (as well as being here of course):
https://aucademy.co.uk/2022/01/20/six-common-reactions-during-autistic-discovery/
https://autismunderstood.co.uk/what-actually-is-autism/
It will take time to process everything, maybe years. I'm three years past my diagnosis and still learning about autism and myself.
I would suggest being cautious about who you share your news with at this stage. They might not react the way you expect them to, which can be distressing and invalidating when you are already overwhelmed trying to process what your diagnosis means for you.
I basically felt exactly the same as you, and I was diagnosed back in March at the age of 21, so I really don't know how bad it would feel if I had been twice that age. My best advice is to leave it a couple of weeks/ months to let the knowledge settle and get used to it before trying to act on it. Remember that once you tell people, you can't take that back, so the best option is to only tell people if absolutely want/ have to.
Now you get the chance to get to know Yourself !Your mixed emotions were just like mine, overwhelming.You ARE who you are and now you can come to terms with Yourself.Best wishes.
Hi Sloan
I was diagnosed in January this year aged 64 at the time. For me it is entirely positive and I tell everyone, it explains everything and is empowering me to overturn years of abuse and neglect at the hands of some (many actually but not all) in the NHS.
Hello Sloan, welcome to the forum, you are amongst folk who understand you here.
Oh Yes! Your response is a very common one, especially amongst the more mature.. I was diagnosed three and a half years ago aged 67 so completely understand you. 'Why wasn't it picked up earlier?' we all ask. Many of us here have been under NHS mental health teams from time to time for years - decades in fact, but for most of us there was no mention of ASD, just anxiety disorders and depression.
I have yet to disclose my diagnosis to anyone except the members of this forum, and I feel fine about it. Of course, others will have been in the same position and maybe disclosed much earlier, but I'm happy with things as they are at the moment; there is no rush... I shall always be autistic.
My advice is to take your time, don't charge at it, wait until you've come to terms with the diagnosis, you may feel differently about it in twelve months' time. Read this forum and read books on autism, carry on researching as it suits you, and ask your questions here; if you don't get answers you will at least get some understanding.