Published on 12, July, 2020
I got my formal diagnosis a few months ago at the age of 26 and whilst it felt so validating to finally understand myself, I also can't help but feel a huge sense of grief for the life that I could've had if I was diagnosed earlier.
I was a 'fast learner' as a child and performed well in school up until I reached high school when I really started to struggle academically due to the lack of support. Since then I scraped by academically, I managed to secure a place at university but barely managed to pass the 3 years and came away with a lower grade than what I wanted or was expected to achieve.
I have turned down countless opportunities in both my personal and professional life due to feeling overwhelmed and burnt out. I have a small group of friends which I don't really see (became worse during the pandemic) and have only ever had one long term partner (broke up a few years ago). I currently work in retail but hate it due to it being so overwhelming socially and sensorially. I still live at home due to finances (working in retail and not having a 'proper' job doesn't help on that front).
I feel like I have wasted a life time by being so overwhelmed and burned out by life. I would love to go back to school and gain some proper qualifications in the art sector as it is where I feel most comfortable and feel that I could pursue a career in this field. Going back to education with my diagnosis would mean that this time around I would actually have the correct support in place to be able to learn, gain experience and achieve to the best of my abilities. I am not able to volunteer my time for 'experience' due to needing to work full time for a wage. The jobs I am able to secure are always low paid retail, hospitality type roles which is frustrating because these are also the most overwhelming and draining.
The only problem is, as an adult it is seemingly difficult to get that time back with regards to a 'do over' of sorts. Whenever I query getting help or additional aid I am always directed to 'local autism support groups' but unfortunately support for autistic adults seems to follow a one size fits all approach with focus being on socialising and carer type support. If you are labelled as 'high functioning' you're seemingly left to struggle on your own.
Receiving my diagnosis felt like being freed from mental shackles and I was finally able to accept and fully understand myself and my needs. However I have spent a lifetime being let down and am now left with no tools to turn that around, I feel abandoned and really at a loss. I want to be able to live a fulfilling life and achieve what I know I am capable of but unfortunately it seems that unless you are diagnosed as a child, the chances of you achieving aren't all that great.
I don't know what I really wanted to achieve with this post, hopefully someone has some suggestions for me but I suppose I just wanted to vent and get it off my chest?
If you made it to the end of this post, thank you for reading!
Got mine at 35
You got time to change things around
HI
It's my first time on this forum. Like you, I was diagnosed as an adult. I was 49. That was a couple of years ago. The things you say have rung true for me too. Support certainly does seem generic at times. Also, like you, I feel that the whole 'high functioning' thing is problematic. It seems to bring with it an assumption that if you can achieve academically, then other things don't carry the same struggle for you. Not true at all. Anyhow, thought I'd respond and say 'hello'
Thank you, it's somewhat comforting to know I'm not the only one in this position. It's so easy to compare milestones with others that have achieved what you were expected to! I think the main thing I am craving is independence but unfortunately the hand I've been dealt means that at this moment I am stuck living with parents and reliant on them for lifts etc. Hopefully in the future there is more on offer for those of us who are 'functional'!
I'm sorry to read this. A lot of it is similar to my own story. I definitely agree that there isn't much help for late-diagnosed and somewhat functional autistic adults. I would also like more/different help than seems to be available.
I would say don't give up hope yet. You are still young. I'm in my late thirties and it's only in the last couple of years (I was diagnosed last year) that things have slowly begun to move towards where I would like to be. Even if I never get there (which is possible at this stage), at least I'm closer to it than I was. You still have lots of time for things to change for the better. How I was at twenty-six is a million miles away from where I am at thirty-eight!
Also, it's OK to grieve not having a different life. I feel I am still doing this a bit. It is difficult to be forced to live a different life to other people, particularly if, as a child, you were raised to think that you could/should/would have such a life automatically. It's OK to take time to come to terms with that.