How do you deal with a late diagnosis?

Good luck on your journey. I was diagnosed last year aged 41 years old. I 'lean into' my autism now that I know I'm autistic. For example, if I'm too exhausted to talk, I give myself permission to be silent and not feel bad about it. I'm so used to being misunderstood and ignored that I'm personally not that bothered whether people believe or accept that I'm autistic. My wife and other people I love have been really cool about it. I haven't changed  I just have the knowledge that I wish I had decades ago. 

I feel seen by this post... and this whole thread of posts to be honest. I got my diagnosis 5 days ago - I'm about a month from my 39th birthday. I think I'm still in rabbit in headlights mode: "wait, what just happened?" Haven't yet got to grieving or the rest of it. I managed to convince myself I wouldn't get the diagnosis - I was making a big deal of nothing, I'm sure everyone thinks like this, stop being an attention seeker - so only prepared myself for this eventuality. Somehow I assumed that because I wanted the diagnosis so badly, I would be fine if I got it. Now all I want to do is curl up on the sofa and hide from the world, for fear of what they will think or say...convinced people who've known me for a long time won't believe me. I think I have some internalised judgements I need to deal with before I can accept it fully... it's gonna be a journey. 

Great post. Totally identify with it. Diagnosed last year at 57. Still at the point of living in the what if world. Too late now. Sick of looking into myself. I don’t understand me never mind anyone else. This helps. I’ve had counselling military and civilian. Worked at the same place for 32 years. But never really thought about much. Thanks for your time.

I have been searching for a post like this. I can’t offer you any advice as I was diagnosed barely 6 weeks ago officially and am very much struggling with processing it. I expected to feel relief but mostly have felt hopeless. That the things I struggle with are always going to be a struggle and I won’t one day ‘overcome’ them or stop experiencing them. That when I say I don’t think I will ever find a partner, or true friendships in the way I want them, there is a reason for this and that reason is something that will never change. “you’re still young” yes but the problems aren’t going away as I get older. Sorry for bringing such negativity to your post, I hope others have replied more hopefully and positively, but I feel seen by your post.

Yes you are, look at the grief cycle by Kolb, and know that you will come out stronger.  

Now what indeed ?

My own journey is that I too have just been diagnosed at 60 what a revelation and raft of emotions. 

Ah ha, so now I understand why I have felt I had to always write so much, say too much, needed to explain so much or even at all, been to exacting, pedantic, a perfectionist, too much attention to detail, blimey it's been quite a journey of explorations and realisations! :-) 

ASD has let me understand that I really am different, I say different to be kind to myself but my overly logical brain knows I am not normal. Normal being the norm of most other people. Saying normal just reminds me where I am and stops me kidding myself I am different, which is not helpful to me.

I am just not normal and whilst that’s always felt hurtful and been upsetting it now reminds me that others are unlikely to see the world the same, so I need to think things through before I interact not because I am different but because 'normal' people are likely to see it in a normal away. I use the word normal because apart from the norm what exactly is normal anyway? 

Imagine realising that when people say, perfectionist, rigid, stubborn, pedantic or inflexible and then me feeling so hurt because surely this is normal, can’t they see it, I am not doing this to be difficult!?    

I see now that others do not see things like I do, so they get frustrated and irritated with me. How do I manage that feeling, I have hurt them, they have hurt me and neither intended to do so? Avoid it totally from here on in or try to understand myself and try to understood what normal people see, that said I don't do this to mask anymore. How debilitating and difficult has that been. 

So I need to understand them, not they need to understand me,  I am reading about emotional intelligence to help me work through how I see the world and understand how normal people see it. 

I hope this will help remove misunderstandings and conflicts in the future with people I know, there are not enough hours in the day right now but I am getting there. I wish I had known this years ago, so many unnecessary difficult times, but I am glad I know.

So now what?

Learn about myself, understand myself, look for triggers and how things affect me and why they do.  Be kind to myself because what I have beaten myself up previously for, I now know it truly has not been my fault, it's just how I am.

So the future looks a lot brighter than the past, and I will get to know who I really am in myself , so I see nothing but positives ahead.  

This really resonates with me - thank you. I loved school, and then it all started to go wrong from sixth form, when I was expected to be more independent in a world full of uncertainty and hypocrisy. So many people have misjudged me as aloof when all I've wanted to do is get on with people. 

This is such a good summary of my own experience - got my diagnosis just before I hit 40, and have been spending a probably unhealthy amount of time wondering where I'd be if I got diagnosed earlier.

I also don't subscribe to the "superpower" line - I see it as there being are some things I'm good at, some things I'm great at, and some things that I'm terrible at, which is something that I'm sure 99% of the population can make.

Sure, my "things I'm good at" come with some life advantages (e.g. ask me to build a spreadsheet and you'll get the best-looking, most functional, colour-coded thing you could have wished for, which helps in my professional life and has led to career progression) but my "things I'm bad at" list includes things that have a negative life impact, e.g. keeping a conversation going after the first 2 minutes of small talk, meaning I'm often seen as aloof.

I wasn't diagnosed as a child because, academically, I was smashing it.  No one could see the challenges I had on the inside and, being a kid, I didn't know that wasn't what everyone faced; it's only lately the challenges have begun to bite (having an impact at work for the first time), and that's what caused me to seek a diagnosis.

The way I've been dealing with the 'what might have been' thinking is to allow myself to think about the less-rosy scenarios of what might have been too.  If my social awkwardness had been coupled with lower academic achievement, I'd have found school / university life and my early career far harder.  That doesn't make me grateful for my autism, but does allow me to make an element of peace with it.

What I've learned over the years is everyone has their own personal struggles even neurotypicals. I agree that overall the "perks" are usually far outweighed by the downsides but at least I know they are others. I spent my entire childhood thinking I was the only one that had special intrests and masked like a undercover agent just to talk to people...

Amerantin (former member) said:

But back then people were told to man up, keep their problems to themselves and get on with it

Yes, that's just what folk thought and said....... ignorance like that was commonplace.

Ben

It takes time to integrate into your life. The later the realisation the more there is to unpick.  You said you were diagnosed in October 2023 - which isn't long enough to get your head around it.  I found varying reactions from people who tried to mean well....it's something a lot of people dont know how to react to because they don't understand it. I didn't fully understand it when I was telling them. This place is very valuable for that understanding...to help to know yourself and find similar experience from others. There might be the idea of empowering children that it's a superpower but in reality, for a lot of adults,  it's trying to live a normalish life and get through an average day. If it was a superpower maybe there'd be less mental health issues and better employment amongst the autistic population. Maybe think about your personal strengths and how they could relate to being autistic or just being you.

I can't change the past and its brought me where I am today, but I can move forward with a bit more awareness and kindness now (for myself and others). It takes time to process it.

eyupnel said:

am a person with real struggles, aspirations, and a desire for understanding.

You summed it up very nicely there. 

Firstly, thank you for your original, beautifully-written post. I was diagnosed as autistic last year aged 41 years old, and you've articulated my post-diagnosis grief perfectly. Secondly, I find the 'autism is a superpower' statement/narrative to be incredibly irritating and ignorant. My neighbour (whose son is autistic) told me that autism is a superpower, and in true autistic style, I said, "No, it's a disability." I know there are different views on that, but for me, my autistic brain has caused me more pain than joy.

Inula 

I am in exactly the same position as you, although not diagnosed yet I’m 49 now and have masked for that long I don’t have a clue who I am or what I like. I guess when you do something for that long it becomes a habit which is hard to break. I really don’t know how I have got this far knowing what I know now. I would love to discover this so called superpower, the only thing I seem to excel at is my job which I get very regular comments saying that my eye for detail is extraordinary. I would like to think my other strength is being a parent and I’m not perfect but I do work extremely hard to be the best I can be. I have 2 boys 9 and 12 with my youngest being autistic and as you said Inula when I found my child was autistic that then turned my attention to myself. I guess to find “your thing” we need to explore and start by coming up with things that genuinely make us happy. In another life I would have loved to work with people who need help and support (I think that would be massively rewarding) 

hope you make sense of it all soon! 

You are welcome! I appreciate it can be really difficult to start self advocating though so good luck!

I too started to struggle when i was about 14. Im not sure if even now the help is there as it should be. Maybe not so much the help but the recognision of "symptoms" so that young people are armed with the understanding of why they experience these challenges. It would take a medical professional about 10 minutes to just explore the possibility of autism in a person. Then refer on. This would save a lot of heart ache and as i keep saying, time and money on pointless consultations asking what is "wrong" with me? Maybe we didnt ask for help because we thought everybody felt the same way? Maybe we didnt know we were autistic because we are autistic? How would we know? Turmoil x

"What now"? indeed!

After the initial relief of a diagnosis (at age 62) I've been through a range of emotions. Grief. Confusion  Sadness. Relief. Annoyance.  Frustration. Guilt and a whole lot more.

Grief because I know I'm not stupid and I could have done so much more during my life with a bit more support. Instead I find myself suggesting to myself that I'm lame for not achieving as others do.

Confusion - because I've masked so heavily all my life that I don't know who I really am. 

Sadness because I didn't get the help early in my life that would have made a difference, instead of reaching (almost) retirement age, looking back and reflecting on what might have been. Could have been. Should have been. 

Relief - when I keep reminding myself I'm autistic not broken. Not useless. Not pathetic. Not a horrible person. Not an unfriendly person. Just different.

Annoyance - (and also frustration) This is mostly with (the very few) people  I open up to when they don't accept my (official professional) diagnosis and say things like "autistic? You? No you seem very normal to me) Or worse still - oh I'm so sorry to hear that!  Thanks to all those media stereotypes no doubt! 

Guilt. Why guilt? Because, although I've always felt different and known I don't quite fit in I didn't see similar traits in my daughter. It wasn't until she was exploring the possibility of being autistic herself (and started nudging me to understand how it might look in an adult woman) that I started to realise that my own life experience is an autistic one. So I feel guilty that, as a parent, I didn't see it in her and get her recognised earlier. 

I don't have anything I could describe as a "superpower" My hyper focus is a video game! (Oh how I wish it were something useful!) 

So what now? 

For me "what now"  involves processing this new information about myself and accepting that I can't change the past. I am now able to be (a little) less harsh on myself for not matching up to the achievements of others.

Allow yourself to grieve and process. That might take a long time but that's ok.

Inula

(Sorry for the long post )

I can accept being autistic, but not knowing until im 59 upsets me. Like ....oh yes your autistic thats why you have had such a hard time, nothing you have done  thats just the way it is. Well thank you for finally telling me!

The time and money wasted in trying to feel better.

Like you i think i am so burnt out i cant do anything about it. Im offered an increase in antidepressants, but im not depressed  i dont want more brain fog. 

I dont want to fit in anymore i dont really care now. We can finally be ourselves and understand our challenges and embrace our qualities

I hope you find your people, they are out there somewhere. X

Well said

I just don’t think even the professionals were able to recognise things back then especially if you appeared to function typically. I still think they don’t know enough now, the problem I think is that we are judged alongside a Nt person which for those of us that blend in can be really tough to have your own judgement questioned. Awareness is needed and although we are more aware of it now there’s still a long way to go.

I'm 35 I'm due my asd assessment in March and honestly how much I relate , I could have wrote this myself.  I just need someone to understand, I want a friend , I want to "fit in" .

Even now lost , jobless ,unable to manage and cope . I'm not accepting of autism,  but this doesn't change me , autism is me. 

But realisation hits hard questioning... everything.

I feel I've became so burnt out I feel more autistic,  often get gaslight , everyone  Dislikes things, everyone has their own opinions. Everyone is abit autistic...

Invalidation hurts , I'm not pretending... wish I could hide again and be the person I was and not lift the mask....

I started to struggle during high school. But the time I was 17 I was a very big mess indeed.

But back then people were told to man up, keep their problems to themselves and get on with it.

So I did. Don’t know how I even survived. It’s had life long consequences for me.

But I think if a teenager had my problems today they would be much more able to talk about it, ask for help and get it. I hope so anyway.

I used to put my struggles in later life, down to having difficult childhood expetiences,  but now i realise this was only one contributory factor.