45 Years, just got my diagnosis today and I am actually devastated..

So I had the final part of my assessment today, and was told that I meet the criteria for diagnosis of ASD and displayed many of the traits, apparently an easy diagnosis.

This has come as a shock, and you may ask why I ended up in this position in the first place, the answer to which is rather simple, to appease others who thought I should.

I am not even sure why I have turned to this forum to vent this either, I guess that it is probably due to my slightly stoic reaction to it with my family, as I did not want them to worry about my mental health.

I knew I was different growing up and into my adult life, but never wanted my behaviour to be pathologized, as I think we are too quick to.. anyway it turns out I know now why, but I truly don't want it, I have spent so much time and expended so much energy trying to be normal, and for what....

Anyway, I really would to hear from anyone who went through this same journey so I can see some light at the end of this tunnel.

Thanks

B

  • I think with a lot of things like this the thing to aim for is acceptance, and to be kind to yourself - just as you would react if a friend or loved one was in your position and you were trying to support them. If you’ve been ‘masking’ - well you’ve been working hard to do your best in the situations you’ve found yourself in. The strategies you may have been using are just your initiative and ingenuity when faced with things you found challenging - that’s not something to feel bad about. You’ve been doing your best and you should feel proud of all you’ve achieved despite some extra challenges that many others don’t have. That’s a huge achievement. 
    You have to accept that you have these autistic traits - but you don’t have to be completely defined by it. You’re still ‘you’ - and still different to every other human being on the planet - autistic or not. Being autistic is a part of who we are - but is not all we are. 
    This is also very early days for you - especially as this came as a shock to you. A lot of people are expecting the diagnosis when they finally get it - and even then it can still be a very unsettling and strange experience to have it confirmed. Don’t judge yourself - it’s a perfectly normal response that you’re having for someone in your situation. You just need time to get your head round it - but you’ll get there in time. But I don’t think for one moment that you should view your life so far as ‘a lie’ - everything you’ve achieved is still valid and meaningful. This just adds another layer of understanding to the person you are. A diagnosis doesn’t have to rip away your foundations - it can simply cast a slightly different light on things. And some of that will - in time - feel much more positive to you I’m sure. It’s just particular ‘traits’ you happen to have, it’s not everything. It’s not all of you, it’s just a part of who you are. You’re still you. 

  • Then in fleeting moments of clarity I ask myself why am I having such a hard time with this, it is what it is right... to answer in all honesty, I just don't know why I have defaulted to rejection, I have no idea how I am going to accept this at all!

    Then I strongly suggest getting yourself a therapist to work through this.

    It is an undertsandable reaction but an illogical one for a highly intelligent and well adjusted person such as yourself.

    You probably have a form of imposter syndrome at the moment but that is straightforward to talk through and develop strategies for managing.

    I would suggest starting with https://www.psychologytoday.com/gb/counselling/england?category=autism

    Find someone who feels a good fit for you and book a session - most are zoom based so you can do while working away if you prefer.

    We all have some adjusting to do post diagnosis so don't worry about it, just do something to help yourself through it and I believe therapy is the best fit for your life.

    Good luck.

  • Thanks for writing this and confirming to me that......you're gonna be just fine........it just takes a while.

    Sleep well.

  • First,

    Thank you all for your kind responses. I have spent the past 24 hours trying to be introspective about all of this. 

    As far as the technical aspects are concerned, I will say I have a degree in neuroscience and a masters in electronics, my work involves both aspects. So I kind of understand what happened which is just worse, knowledge is power... until it isn't.

    However it is the emotional side of this I am really struggling with, as I would have staked my life on me not having autism, being so confident (retrospectively stupidly) I told the psychiatrist assessing me that I was sorry I had wasted their time, to then be delivered the line "Actually, you do fit the criteria for ASD".... I felt like I was actually in a movie, the world was turning but I was not on it.

    It felt like everything I thought I knew about myself was just a lie, that I am nothing but the sum of my masking, and that most likely nobody actually really knows me, probably including my son, which just breaks my heart.

    So what now.... I have to be up in a few hours to go to Italy for work, and I am dreading it, just the thought of leaving, a new person of sorts and facing people, knowing that the projections of ones self are just a sum of the strategies I have developed over the years to protect myself.. from them, is just inconceivable to me.

    Then in fleeting moments of clarity I ask myself why am I having such a hard time with this, it is what it is right... to answer in all honesty, I just don't know why I have defaulted to rejection, I have no idea how I am going to accept this at all!

    As far as my family, I may not have presented that well, I come from a VERY understanding family, to the point that it is almost too much. My Mother and siblings could not be anymore supportive, my mother is a mental health professional so it probably helps.

    Well, I am guessing I can learn a lot from you guys here and hopefully face this with the bravery you guys have spoken about in your posts, I pray that to be the case.

    God bless you 

    B

  • I have no friends, no partner,  my family are mostly gone and since Covid all my workmates work from home so I don’t even get that day to day human contact. Without human connection, life feels very pointless.

  • The single biggest problem autism has caused me is that I am all alone in the world and I am now having to come to terms with that never changing. I don’t know if I can do that.

    Can you tell us why you feel this way?

    Is it a relationship sort of being alone, lacking friends or just not being able to tolerate or connect to others?

    All these things can change but all require effort and hope.

  • I got my diagnosis at the age of 52 just a few months ago. My first reaction was grief, for the life I might have had if I’d received help when I was younger. Then I busily set about trying to create mitigations for my autistic challenges, now that I understand their cause. But now I feel rather hopeless about it all.

    The single biggest problem autism has caused me is that I am all alone in the world and I am now having to come to terms with that never changing. I don’t know if I can do that.

  • I’m sorry you’re feeling shaken by this - but it’s not surprising as it is a lot to take in. It makes you reassess things and it is unsettling. I was diagnosed earlier this year and I’m in my mid fifties. Even though I was thinking I probably would get the diagnosis (both my children are autistic so I knew the signs) it still felt strange when I actually got the letter.

    It still feels strange in some ways too. I almost feel like a fraud to say the words ‘I’m autistic’ - because I’ve spent the majority of my life not realising that I was. But I’ve always struggled in very typically autistic ways (such as socially for example) so in some ways that ‘makes sense’ to me now. I’ve also struggled a huge amount with anxiety throughout my life so now I have a great understanding of why that has been the case.

    Ultimately though the diagnosis doesn’t change who we are - nothing has essentially changed. We are what we are- label or not. I think possibly it’s helped me to be more forgiving of myself, for the fact that I’ve found life so difficult at times, and that’s helpful. But it hasn’t made me any better at coping with life. Life still feels very hard most of the time. 

    And of course there is the issue of telling other people, and how other people respond to that. 

    There’s a lot of complicated emotions all round. I hope that in time you will feel a bit more positive about the diagnosis. I think it can be helpful - but it takes time to process the whole thing and it’s bound to prompt mixed feelings. The community on here is incredibly helpful and supportive - so we’re always here for you if you want to talk about anything. 

    sending best wishes and solidarity.

  • but never wanted my behaviour to be pathologized, as I think we are too quick to..

    This was absolutely my feelings at 45 yrs old.............just before I had a mega autistic burnout that very nearly destroyed me, the lives of those around me and the potential for any viable future.

    I then spent a VERY expensive and upsetting period NEEDING to pathologise what the bloodyhell had just happened to me when I was at the lowest point in my life and least able to do so.  It was a catastrophic mess BjornUK78 !

    Whilst you may be feeling a little hollow right now.......I think you dodged a bullet !!  Now all you need to face is what you have described above in your VERY resonant opening remarks above.

    we're all here to talk if you need us

    Yes we are.

  • Hi B, 

    Thanks for your post. 

    I am sorry to hear that the new diagnosis has caused you to feel stressed. 

    I was diagnosed at 35 (recently) and initially I felt elated, because I finally had 'an answer' to why I am like *this* but over the days following I did start to feel quite blue about everything and began to ruminate on the various 'what ifs'. 

    I understand your reticence to pathologize behaviours but maybe you don't have to look at it that way, this is just a new side to the parson you have already known all this time. You don't even really have to pay much attention/disclose your diagnosis too much if you don't feel like it - it's totally your choice.

    It makes me a little bit sad that you only undertook the process because of other people pressuring you to do so. I hope they are at least appeased that it is done now. 

    I hope you can find some light in your tunnel - we're all here to talk if you need us :) 

  • I knew I was different growing up and into my adult life, but never wanted my behaviour to be pathologized, as I think we are too quick to.. anyway it turns out I know now why, but I truly don't want it, I have spent so much time and expended so much energy trying to be normal, and for what....

    Hello B, welcome to the forum.

    Have you researched autism much yet?

    If not then it is worth knowing that you are not normal - you are neurodivergent which means your brain developed differently to normal people, so when you were trying to be normal you were trying to do something that is fundamentally against your nature.

    The one huge advantage you now have in knowing you are autistic is you can identify what behaviours are you trying to be something you are not, and learning how to be more authentic to your nature. This is a learning process and one I would recommend you do with a therapist with experience of autism.

    The benefits are that you stop wasting so much energy trying to be something you are not which should make you feel less stressed and anxious, and by learning to embrace your autistc traits you can build on this to improve your quality of life.

    As you discover who you really are beneath the masking and scripting it can be fascinating and I found it brought a degree of inner peace about now feeling I know who I really am.

    It took about a year to get to that point and would have been a lot longer without a therapist.

    You don't need to tell your family or face their judgement if you don't want to - in fact no-one needs to know if you chose not to tell them.

    An important thing to understand is that autism is highly hereditory (about 80% chance an autistic parent will have an autistic child) so there is a strong chance your family has autists in it on at least one side of the tree.

    If your family are older then they may well have stigmas around it and won't want to know they are potentially neurodivergent so I would be wary about having that discussion with them.

    I was diagnosed in my 50s and am happy to finally understand all the odd stuff in my life and make it work for me.