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.
It's my son who is diagnosed. (It has been suggested that I do too but the waiting list is so long and I feel like I'm coping enough to not take up a space in the queue in case I delay someone who isn't coping enough from getting help).
I feel like as soon as someone finds out he's autistic then it's ALL they talk about. Especially some family members. I have one who wouldn't really listen when my son was younger but now she's looked into it she's suggesting all the stuff I've already tried. It's relentless and I just get so bored and fed up and I want to scream at her that just because she knows another little boy with autism it doesn't mean the same things apply to my son. They are their own people and can't be shoved in a box labeled "autistic".
Sorry about the rant. This is the way in which I'm bored with autism. Everyone constantly talking at me about it instead of talking with me and listening.
Hi Tulip,
Thank you for your input.
I don't think your opinion is in the minority. Certainly one of the main factors of my wanting to go back to work in some capacity is motivated by frustration and over a decade of experiences similar to many others within the neurodiverse community. My personal favourite was there wasn't such a thing as Adult ADHD until 2008. Where's the logic in that? Though on the positive side, it does give hope for everybody labelled 'different' under negative connotations. I mean how much worse could it possibly be? Surely we have earned a chance?
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.
I wouldnt say im bored with it, more like shocked. Shocked at the lack of knowledge and understanding by the nedical proffessionals in general. Its not like autism is a new diagnosis. Where has everyone been? They avoid talking about the diagnosis, because they dont understand it.
Please this has to be a priority. Lives are ruined as a result of the lack of knowledge and understanding.
Mmmmmmmmm, yes. Your experiences sound very familiar to a large proportion of the neurodiverse community, certainly the people I have spoken with. There is a terrific charity local to me, established by family members on behalf of one of their siblings offering a range of services and a gathering place for people on the spectrum. They have struggled almost continually with funding, politics, and general indifference. As I said above, the system needs changing. Yet, its difficult to know where to start. And if I am honest, I don't think we help ourselves as a community as much as we probably could.
I think the whole system needs changing. It's always stuck me there is a certain amount of "on the job" learning from the vast amount of professionals and specialists; that is certainly my experience. Location is a huge determining factor, also.
I am just bored in general. I only got recently diagnosed (late) the lack of support for autistic people diagnosed late let alone adults in general for anything is horrible
Fiona said:when actually I wanted them to listen to what my story was
I think this is the crux of why people switch off when we share this with them - we are seen as being selfish and oversharing something they would rather not talk about ('coz we are "wrong in the head" to many of their ways of thinking).
They want to be able to tell you about their experiences too - just listening is not their thing. It's a neurotypical issue I think and while not all do it, most see to.
I've found people just don't care on the whole and any discussion about "mental illness" (their take, not mine) is something you don't talk about unless it is to talk about others and how terrible it is.
Just sharing my observations of this.
I can understand why it bores and irritates you, but I'm equally frustrated by the lack of support I was offered and how hard I had try to get any at all and then find that all they were really interested in was making sure I had the right benefits. They kept telling me to tell them what I wanted from them, so I told them a couple of things and they said they couldn't do anything about them. Whats the point?
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.
I have a feeling bipolar will disappear into ADHD unless it’s the NT version, which fits a sort of classic Neurosis.
I absolutely understand....on one attitude you have people expected you to be Einstein and 9thers treat or expect you're stupid..I say this as have experienced this type of attitude of people toward my son who was diagnosed back in 2018. Also he is very limited in his life it is debilitating and ye does get benefits as you say and right he does as it does give some dignity at least you know if he was in another country it's likely we'd be sitting in cardboard boxs in the tube station. Anyhow yes trouble is it is like giv8ng sweets...because they give the money but there is no further help that's actually needed because this world was built to function for neuro typical people so neuro divergent peeps end up marginalised pushed to the side and frankly just treated like waste as their skills and talents are wasted...I don't see any change in this happening soon either. It's been that way for a long time ...the world runs on the dollar ...some countries (though sadly not the main ones like uk and america) actually support their crafts people and artists etc ...but in uk America it's just a case of oh well you don't fit into the mould we have and even if you have a lot to give thus world we don't care your just on scrap heap your not valued...which as you know does no good for a healthy mindset..its like you retired like a 75 Yr old when your only 20 etc etc....what can I say don't look to me for a positive spin as there ain't one...you just have to iron we try to just get through one day to the next...
Bored and irritable said: It baffles me how influential neurotypical people are within the system.
Neurotypicals are something like 80% of the population while neurodivergent autists are 2% (ADHD and bipolar make up the other 18%) so it is hardly surprising they make up the majority.
They are also better able to navigate education and a career in medicine than us so there are many more than of us.
Bored and irritable said:However, there is a certain finality in receiving the benefits.
I'm not clear what you mean by this? Do you mean you are claiming disability benefits?
Why not find specialists who have credentials and references? It would be worth interviewing any potential therapists to see if they are capable before enlisting their services.