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?
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.
would you mind telling me about the advantages? I'm really struggling
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.
You are welcome! I appreciate it can be really difficult to start self advocating though so good luck!
I will definitely try, thank 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.