Published on 12, July, 2020
Am I grieving?
Being diagnosed with autism at the age of 30 was a defining moment in my life, but not in the way some might expect. Instead of unlocking a world of understanding, it felt like I had uncovered a Pandora's box of lost opportunities, missed connections, and the harsh reality of a childhood and education that slipped through my fingers.
As I reflect on my life, I can't help but feel the weight of a lost childhood. The struggles that seemed insurmountable, the friendships that never formed, and the feeling of being on the outside looking in – these are the echoes of my early years. Autism wasn't a badge of honor; it was a veil that clouded my perception and left me isolated.
My educational journey was a rocky road paved with misunderstandings and unmet needs. The challenges I faced were not acknowledged or addressed appropriately. Instead of support, I received confusion and frustration. The diagnosis at 30 brought with it a bitter realization – the education system had failed me, leaving scars that time couldn't erase.
The response to my diagnosis surprised me. Instead of empathy, I encountered a barrage of well-intentioned but misguided narratives. Non-autistic people, perhaps seeking comfort in their own understanding, spread the nonsense that autism is not a disability but a superpower. It's as if they believe we should be grateful for a condition that, in my experience, has been more debilitating than empowering.
"Appreciate having autism; it's a gift," they say. But what about the struggles, the isolation, the daily battles with a world that I can't fit into? It's not a gift; it's a complex and challenging aspect of my identity. To dismiss the difficulties as mere negativity denies the reality of my experience.
The rhetoric surrounding autism sometimes takes on an exclusive club mentality. As if we should be honored to be part of some elite group. Terms like "aspie" are thrown around, treating us like cute, endearing pets. I am not a novelty. I am a person with real struggles, aspirations, and a desire for understanding.
Being diagnosed with autism at 30 was a revelation that forced me to confront my past and reimagine my future. It's not a superpower; it's not a gift. It's a part of me, with its own complexities and challenges. So what now?
What i struggle with, is how have the medical proffesionals failed to diagnose sooner, despite the nice guidlines providing guidance, on when to consider refering or investigate, for diagnosis for some years.
Someone who repeatedly visits the doctor saying, i dont feel well, im so tired, apoearing to have unstable emotions and nothing seems to help, for example medication, counselling, self help practice etc.
Early identication would have helped me realise just how vulnerable i was, some could see it, but i couldnt. I would have understood that despite wanting to socialise, i would understand why i felt so awkward and didnt feel as i fitted in. My wanting to be like every one else; i would try so hard but of course i wasnt like them. My feeling intelligent and capable, but why did i struggle to meet the demands while others didnt. Why did i think marriage was something other people did. Why was i always so so tired, and yet nothing medically wrong with me? Going through life not knowing is in my opinion neglectful.
I dont wonder how my life would have been except i would want to know. Just like someone who has a dissability would want to know. Why i struggle with walking? Talking? Hearing? Pain?
If we know we can try to keep ourselves safe. Understand what works for us and what doesnt.
If you are born with a life long neurological condition that is going to affect you both in negative ways and in positive ways, which will cause you to feel like you dont belong, may make life challenging in ways that coud cause you anxiety and depression amongst other health conditions and if this neurological condition is not managed well, of course you would want to know. People have no idea incuding the medical professionals, about how difficult it has been. They dont know about our hidden struggles.
Sorry for the rant. When i feel up to it i want to say so much more to everyone and raise awareness of the damage that is often caused by late or missed diagnosis.
I don’t blame my parents at all either. They just didn’t know. Ironically I’m absolutely positive my dad was autistic too and he died without ever knowing it. This must be true of so many of our families.
At least people now are getting the chance to truly understand themselves.
We have always known there was 'something up' but I was told I couldn't be autistic as I am female, and was diagnosed with various mental health disorders instead from around age 7. I got officially diagnosed with Autism in October 2023
I will definitely try, thank you
Well said, i couldn't agree more x
Please don’t beat yourself up over the past with what if. Just remember that you had no control in your responses or the knowledge to approach things differently. As a child it wasn’t your responsibility to know why you were the way you are. My parents are both amazing and I love them both dearly but they too never recognised that I was struggling or different. How long have you known about being autistic? I’ve had months of worrying and beating myself up wondering what’s next and how am I going to manage. Although I do have ok and bad days I’m starting to accept it now. I just think when we are younger people can’t see what we feel and think that’s just our personality.
Stay strong and I hope things get easier for you
Why don’t you just say ‘that’s not my experience ‘ and then explain your own autistic experience?
I know you shouldn’t have to advocate like this when you are with medical professionals but unfortunately this is sometimes still the case.
Very patronising.
I think about the amount of times I’ve been to my GP over the years and all the misdiagnosing. I’ve personally lost a little faith in my GP.
It's my GP that mostly goes on about it being my superpower I just find it incredibly draining, like what can I even say without coming off as rude, you know?
Thank you for sharing
Great list!
I believe that being autistic was very much a protective factor for me growing up.
My linear thinking and strong sense of justice has steered me against the grain of my peers. It wasn’t until I received my diagnosis that I understood this and it felt quite freeing.
I worry for the future a lot though. I always believed ‘right, next time you’ll get it right’ with every failed conversation or confusing/awkward interaction. I hope to find like minded people to feel less isolated.
I don’t see autism as a super power, people are ignorant but in my day to day I don’t feel burdened with the need to educate them.
We're all different, but i listed these in another thread:
That thread is here if you want to see what others said.
would you mind telling me about the advantages? I'm really struggling
I was diagnosed just over six months ago at the age of 52 and my first reaction was grief, for the life I might have had if I'd received help when I was in my teens.
That mostly passed after a few weeks and then I was in "so now what?" mode. I'm pretty much still there to be honest. There is very little in the way of support for autistic adults, so all I've been looking at is minor changes to my life and my work to try to mitigate my difficulties a bit.
I certainly don't regard autism as a superpower. It has given me some advantages, undoubtedly, but for me they are all massively outweighed by the social isolation. I'd give just about anything for a normal life and a family.
One next I'm investigating is a coach. There are quite a few coaches out there who specialise in guiding autistic people, but a lot of them look like unqualified quacks to me, so taking my time with that.