Published on 12, July, 2020
Hi all,
Strange title, I know, especially given where I have chosen to publish this. But does anybody else feel the same? It may be that my late diagnosis contributes to how I am feeling or that I have only had my diagnosis for seven years. Still, I constantly have the feeling reinforced by my interactions with the "support structure" that runs parallel to the neurodiverse community.
I suppose I suffered from a certain amount of naivety as I trudged along the diagnostic path. I often considered what life would entail (It is nothing like I thought it would be) from a post-neurotypical perspective. Would I become a maestro on the piano? Would I develop savant-level maths skills? I kid, obviously, but it highlights a significant point as to how Autism and ADHD are perceived in broader society and how there is far more grandstanding than tangible services and support; indeed, knowledgeable services anyhow. It baffles me how influential neurotypical people are within the system. Not that I am suggesting it is wrong, as such, as I find it odd, there is a particular paradox to it, if you will.
Don't get me wrong, I am fortunate in certain aspects, primarily economically; I don't have to worry about housing, bills, etc. However, there is a certain finality in receiving the benefits. It is like giving children treats as a trade-off for some peace. It never occurred to me that retirement would come so soon. As I previously said, I had a late diagnosis and worked for two decades prior. If I am honest, it was never really successfully, often obsessively and massively aided by the industry I was in (Gordon Ramsey, anyone?). For two-thirds of that time, I was the boss, so I was perhaps lucky not to have gone through some of the challenges faced by the small number of neurodiverse individuals in the workplace; I was miserable, and it was accepted.
So yeah, there is some context and justification for my opinion. I'm tired of going to see 'specialists' who know less about the subject than I do, tired of treading water in life and close to breaking point on hearing the endless parade of businesses who are "embracing equality, diversity, and inclusivity" in the media (an obvious marketing ploy) yet couldn't identify the basics. How do others feel? Am I alone in feeling like this? It occurs to me that the solution often is worse than the cure or doing nothing at all in some cases. I want to contribute, I want to be busy, and I want to use all the skills and strategies that I have been taught to combat the negativity of neurodiverse behaviours. Yet every avenue I've explored is a dead-end or comes with normative restrictions that mock the rehabilitation process (if that is the correct word).
As the saying goes, "No (insert relevant) is an island", so I open the floor to your feedback and thank everybody for taking the time in advance.
Bored and irritable said:I often considered what life would entail (It is nothing like I thought it would be) from a post-neurotypical perspective.
I never really thought what life would be like after diagnosis. Even right up until the meeting where I was given the assessment outcome, I hadn't any idea on the impact. I just waited for the outcome.
Since then, it has been interesting telling people.
When I told people when I had cancer, everyone came back with "Oh, my mum/dad/gran/friend/... had cancer and ...." when actually I wanted them to listen to what my story was and appreciate that I had no energy to listen to their story!
When I tell people I have autism it has been a mixed reaction. I haven't told my mum/sister/cousins, but I have told some friends. The ones who are more inclusive by nature were "ok, and that's a surprise how...?" because it made no difference to them. One friend had a rant on WhatsApp to me about her friend's autistic grandson's meltdowns before I shared my diagnosis, and I had to correct her poorly informed assumptions, then she wasn't quite sure how to take my diagnosis informing my education.
Bored and irritable said:I'm tired of going to see 'specialists' who know less about the subject than I do
I guess again, I'm lucky, I haven't seen any medical person since my diagnosis, although I would like to contact my GP surgery about a better way to speak to them other than phoning, being on hold listening to loud bad quality music for half an hour and having a strange conversation with someone non-medical.
But I have found, with my physical mobility issues, I am often a lot more informed than the medical person I'm speaking to. Because I like to know the details, and they often only know generalities. I live with my condition, so I want to become an informed expert on it to get the best out of me. It takes a long time to get to the specialist with the detailed knowledge in a particular condition, and they are mostly only dealing with the most acute or difficult cases - leaving others less well informed to deal with the more routine. I don't mind educating other people. There are things they will educate me in. Every day's a school day!
I'm sorry your work life was miserable. Mine was too, until I made a career change in my mid-40s. I am now doing a more appropriate job, with hopes of getting my ideal job soon. It sounds like you have been 'fed up' for so long it feels like that is your normal - but only you can change that. You can decide not to feel those fed up thoughts into something else. I was always miserable and fed up when I was in the wrong job. But moving to a new career I am more my natural, optimistic self. I realised I wasn't willing to be a victim to circumstance, so set about changes.
Hi Fiona,
Apologies that I didn't get around to replying yesterday. And thank you for your extremely positive response where the concept of change is concerned.
I think everybody's diagnostic journey is different. As mine took over a decade and I went through a dozen different conditions (some stuck, some didn't), though I had plenty of time to ruminate, as I was put on sick leave at the start and thirteen years later I am still there.
How sad to hear the group response was one of competition, and not of compassion concerning your cancer. Not that I am overly empathetic by nature. It however does speak volumes of the ever changing mindset of the "pack". Personally, I believe there has been a dramatic fall in societal values and old fashioned manners. Do you?
Your comments about changing career path are encouraging. I wasn't miserable in with my job, as such, it was pre diagnosis, there was a lot that I didn't know (for instance, I didn't automatically smile, as the neurotypicals do), and alot I wasn't equipped to deal with. I love cooking, but I wouldn't return it in a professional capacity, even if I could. There are many pursuits that interest me more now, many other things that are of greater intrinsic value which I wish to spend my time on.
So, yeah, that is the general gyst of the feed. Starting again. I'd be lying if I said there hasn't been times that I was content to sit on my backside, and ride it out until the end on benefits. But, what type of life is that?
Thanks again for your reply.