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 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 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!