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.
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.