Published on 12, July, 2020
Four decades of trying to get on. Fourteen years of school. Two courses of CBT. Surely, an abundance of clues given off by me… and nothing. *I* had to be the one to suggest autism. But not before all those decades of tacitly assuming and resolving that all the stress and anxiety were things I just had to be clever enough and strong enough to push through. Desperately trying to obtain and cling on to a shred of credibility, despite my weirdness. Being failed over and over again by a lazy, vacuous, uncaring, one-size-fits-all system. Having such a low opinion of myself for thinking I was a pathetic failure. And feeling so humiliated at being alienated by the ‘normal’ majority that this precious society is designed for. Trying so very hard to get on and succeed… denigrating and trying to push past my weirdness and difficulties. And internalising such nasty, cruel thoughts. Hating myself for being weak, stupid, gormless, needy… and projecting that onto strangers, because they represent the normal majority who seem to have it so easy by comparison and are so unguarded and homogenous in each other’s company. Is it any wonder I felt “f*** you, then” and kept them at arm’s length? And that was before covid AND the cladding scandal came along to terrorise me simultaneously, as I lived alone in this flat. You’ve really done it this time… you expect me to be like you? Shrug a shoulder and casually go wading back into social mixing despite the risk that remains? Like I cannot possibly do without you? After what you’ve done to me? Go f*** yourselves. That’s how I feel. I’ve had enough of the arrogant, flippant, lazy, casual, offhand, uncaring, vacuous, one-size-fits-all attitude. It got very old a very long time ago. And now, with this toxic, non chalant “we have to learn to live with it” attitude… they just expect me to swallow that? They expect me to need THEM so much that I’m prepared to risk getting long covid for the ‘privilege’ of their company in this shallow consumer culture that we cannot possibly do without? Either that or they expect me to be so flippant, casual or in denial about it (LIKE THEM) that when BORIS (that well-known philanthropist and teller of truths) comes on TV and says “you don’t have to wear a mask any more!” I’m supposed to be like them and say “oh, OK, great, let’s all get down bar and ‘ave a f***in’ brew!”? Er, no. You’ve really done it this time. How dare you expect me to come gormlessly sauntering back to your society after everything you’ve done to me. Shove it. I’m out.
Yes. Welcome to the reality of being an autistic adult without any support.
Arx said:Being failed over and over again by a lazy, vacuous, uncaring, one-size-fits-all system.
Sums it up very well.
Well, this suggests a serious and systemic failing. I’m very concerned now that there are a significant number of people being failed in this way. I think something needs to be done about it.
Arx said:You’ll get a piece of paper that 1) will help you get reasonable adjustments, with corresponding legal protections, and 2) it’ll persuade any healthcare professionals who think only in labels that you need something more tailored. As I say, the ‘entry level’ CBT stuff assumes a previously happy neurotypical who can be made ‘better’ by learning how to gaslight their troubles away. That’s an extremely dangerous assumption to make. None of us can ever be made ‘better’… to go through a process that implies that we can is no better than conversion therapy. It is absolutely essential that they correct their understanding of you.
With regards to point 2 I think you have to be extremely persuasive and/or lucky to get any kind of specialist therapy tailored to autism. In most areas it simply doesn't exist unless you're able to pay privately.
When I was first diagnosed I naively thought that I would be able to access some sort of specialist autism informed therapy for my lifelong anxiety. That was even recommended in my diagnostic report. However it proved impossible to access, as all requests were rejected by my local CCG
I've been through the scripted basic CBT several times in the past. Unsurprisingly it didn't help me. The problem I have with it is that it makes the assumption that my thinking is faulty and needs to be fixed. During the courses I quickly found that I didn't think in the way that it was assumed I did. In my mind my thinking isn't faulty and doesn't need fixing. Of course I now understand the reason I think differently is due to being autistic.
Absolutely Nailed it!!!
Except for one small detail.
Society isn't designed for the normal people either, its designed very carefully to suit the needs of a very small group of people and be tolerable by the normies..
Well, it sounds to me like you’re gifted and you’re not getting when you’re entitled to in order to help you be as happy and fulfilled as you deserve to be. Certain individuals can be great but the ‘system’ overall has heaped too many unreasonable assumptions and expectations at us whilst not bothering to understand us enough. Try to get yourself on that diagnostic process. You’ll get a piece of paper that 1) will help you get reasonable adjustments, with corresponding legal protections, and 2) it’ll persuade any healthcare professionals who think only in labels that you need something more tailored. As I say, the ‘entry level’ CBT stuff assumes a previously happy neurotypical who can be made ‘better’ by learning how to gaslight their troubles away. That’s an extremely dangerous assumption to make. None of us can ever be made ‘better’… to go through a process that implies that we can is no better than conversion therapy. It is absolutely essential that they correct their understanding of you. Oh, and you don’t need to pipe down. Be kinder to yourself. One other thing, there are various forms of help and support to those of us who have difficulty managing finances. You don’t need ‘fixing’. You need recognising and you need the help you’re entitled to to manage as best you can as you.
Well. My understanding is people who caught covid in the omicron wave were looking at an about 4% risk of long covid as opposed to 10% for those who caught it in the delta wave ... Now most of those were people catching covid for the first time. It's very hard to say because I can't find the figures but it's very unlikely the risk level for the 2nd infection will be as high as the 1st and like wise for the 3rd etc. After all we know all the other risks tend to go down with subsequent infections and predisposition to long covid is likely to play a role.
And bare in mind long covid is any case where you're having symptoms 2 months after infection. It will include less sever cases as well.
I appreciate the intelligence that informs your comments Arx, it’s just mind boggling to me how full and ready your response is. Can you tell that my reply to you is the first I’ve made on this forum? :D
I think that the systemising nature of Asperger’s/ ASD and the ‘long way round’ trials, that are brought on my the rigid nature of the way we may process life and interact, makes us quite knowledgeable in the end. By the time we’ve finished, we’ve mapped a thorough view of a process. Driven by interest I’m proud to call myself an amateur; it’s just a shame that the world is so reward-punishment, so professional.
I was a wallflower for the whole of my schooling, I never said a word and the majority of my education was achieved as soon as the overseers/lecturers were gone and I could pursue topic by my interests. Years later, when I tried my hand at adult learning (voluntary), I could pick an atypical learner out of a classroom full of learners. I could supplement there struggle with minimal effort. With all of the following and watching I did over the years, I found I could naturally stabilise the flow of a small class. I didn’t need to employ any of that pseudo-leadership/reviewing that society is so eager to implement. These man-made structures don’t stand up to life-experienced and sensitivity-driven service providers. I realised that maybe I was life-experienced in being atypical, but non of the time-orientated clock watchers that I was appointed over the years cared for the extra paperwork.
For all of the people that I have spoken to, it’s crazy that the most original and comprehensive responses I’ve had, have been from fellows. It’s not so hard to imagine that the people most attuned to my woes would be comparable in experience. If it takes 10 years to become proficient, then I’ve got 23yrs (from start of school) of experience under my belt. In the face of such complex problems that I don’t have words for, I’m struck dumb. What chance have any of us got in finding an understanding, with a graduate with 5 years of theory and tick sheet as a guide?
There’s nothing in any conversation with any professional I’ve spoken to that I couldn’t have read in a book. But you’ve gotten back to me in an hour with a comprehensive and multi-layered consideration. How it is that people of our type get stuck at the bottom of the pyramid, with no other option that to spent our days casting pearls up to swine, whilst they throw foul back down at us. How can it be that I’ve got two equally high piles of books on CBT and Asperger’s literature on my desk (lawn furniture) whilst I sleep on the floor in a unfurnished bedsit for years on end and starve; and at the same time, sit in front of an falsely-smiling inquisitor and be called unmotivated and vain? How can it be that I am a ‘parasite on society’ and a ‘scourge’ when I take less than I need and have given the last pounds I have, net, to the homeless of the street countless times because I have known there suffering and understand the power of an unguarded exchange; yet I have to sit in front of a fool who thinks ‘my’ beliefs are in the wrong place and not theirs?
I believe in fairness as much as the next man; but I’m a depressed, anxious hermit who liquifies his net worth to zero every month and put it all straight back into the economy. I effect nothing an no one and I’m not so sure I’m fairly treated by anyone. In fact, I’m not so sure that anyone who is forced to push up hill forever because their community overlooks and exploits them is the one with the arrears, moral or otherwise. I mean, hell, Sisyphus got his boulder because of his inequities; we get our boulder because of our community’s inequities.
Apologies, I feel incredibly intoxicated to be able riff/vent/rant in this way and to a receptive audience no less, I’ll pipe down now:D
Thanks for this. Sounds like that CBT therapist of yours is just following the same kind of script as both of mine followed, which assumes they’re dealing with a neurotypical person who has, until recently, been a perfectly happy, ‘normal’, functioning person. And despite the number of clues both of us have given off, they’re sticking to the script. It’s dangerous as it may inadvertently encourage denial, masking etc. which will only end one way. You don’t seem like an imposter to me at all. Try to get that screening. If nothing else, it may open the door to something more tailored to you as an individual. You deserve that. It sucks that we have to fight for anything beyond ‘entry level’ stuff that doesn’t assume the above and doesn’t try to patch us up and throw us back with minimal effort. It sucks even more that it seems so common that it has to occur to US to realise that we need something more than that, when they’re supposed to be the ones trained to spot this stuff. And in our trusting innocence, we assume that they’re doing the right things by us. It’s just another example of how we’re being failed and we’re left wondering why the problem isn’t being solved. No wonder there’s this temptation to think of ourselves as ‘weird’ and no wonder the desperation mounts. Well, we have to start being kinder to ourselves and insist they make an effort to understand our needs properly.
I have to say that your lamentation of the journey to an answer through the processes of a ‘typical’ person mimics my current struggle. Being further behind, I haven’t managed to get ASD screening yet, situation is something I wrestle with constantly. I have just managed to complete my first session of 12 CBT sessions this week, after waiting for 2+years, having awakened to the idea that my brain’s suggestions are not enough to free myself from my doleful existence.
I am being intimidated, coerced, and shamed on a daily basis to conform and adapt to what society what settle me into, individuality be damned. I am trying to take account of myself, I feel that without some kind of affirmation and adjustment I will be doomed to burn out every time I have a burst of stoicism. CBT for me is, without resources and answers, at best a means of counselling. I guess I feel the practical aspects of CBT are too far from the coping mechanisms I already have in place to mitigate the threat of the world, I feel my behaviours are the best I can do with the resources and knowledge that I have. I’m not a resource-rich individual and I’ve fallen to a level that a can stabilise with the attitudes I’ve scraped together with my wits and experiences. I don’t feel I have the means to build.
Hell, I even reached out to NAS in a fairly comprehensive way and all I got was a ‘check the website’ email. Perhaps it seems that tarring future experiences with the brush of past stonewalls is over the top, but there’s a point where the tally of all these experiences build up a precedent that is quite reasonable to use; we live in a standardised world and what is standardisation if not a process built off averages to deal with averages; but I’m not the right kind of average. I am weird enough to not be invested in and passable-enough to be allowed to fall through the cracks.
I don’t talk, think, act, feel or sense like anyone else I know; I feel a certain kinship after reading this comment, but without a diagnosis or even a confirmation I feel like an imposter just replying to this. I’m told that my, evident but non-priority, anxiety and depression is a result of my ‘core-beliefs’ but somehow I think that vanity is not my issue. I think that the daily threat of being atypical in a typical world for 27 years has allowed me to create a mask strong enough to deceive the harsh environment; in which I live, into thinking that I am stiff necked, but really I am just inept and scared of being pressed to perform the impossible and punished for trying to appease the unsateable.
Anyway, I appreciate your comment Arx, there’s a lot of truth to what you say and it’s a comfort to be able to draw comparison from your experience.
Anyone can get long covid, I’m afraid. The chances are reduced a little bit if you’ve been immunised but they are far from minimised. Long covid is still not fully understood and it may even turn out to be several different things. One such thing under investigation, with mounting medical evidence, is micro-clots that inhibit cell reoxygenation, which is one possible explanation for why some sufferers get so knackered so quickly. Also, various other forms of viral detritus can linger in the body and they can cause a chronic inflammatory response. Sometimes it can turn the immune system against the body. Covid generally can cause not just respiratory disease but vascular disease also. This leads to one of the current theories where one of the causes of brain fog is due to what is effectively a bit of brain damage. The vaccines reduce the severity of the initial acute symptoms and so have met their main goal of preventing hospitals being overwhelmed. Unfortunately, there is more to covid than those initial symptoms. I really wanted/assumed that the jabs would fully trivialise covid but, as ever, things turned out more complicated and nuanced than that. Also, covid mutates a great deal, even in viral terms, and the newer mutations have a degree of ‘immune escape’. Now, the jabs still provide ‘good protection’ against severe initial symptoms but evolution is allowing this thing to try to wriggle free. To make matters worse, it’s not a case of ‘one and done’ when it comes to infections. Reinfections can and do occur quite a lot and there is little in the way of a ‘grace period’. And every time you get infected, you might be unlucky. Covid also damages the immune system. The more you get infected, the more knackered your immune system may become. That means not only will it have a harder job fighting off a subsequent covid infection, it will have greater trouble fighting off ANY subsequent infection. This is a more serious problem than ‘immunity debt’ which sounds to me like a convenient rationalisation for mixing. I’ve spoken to several healthcare professionals this past year and each time asked them what their stance is. They ranged from a GP who was very bullish that ‘we’ have to get back out there again, to a nurse in Manchester council’s telephone covid advisory service, who wasn’t far off being as reticent as me. The devastating truth is that life really is more dangerous than it was. Different people are dealing with it in different ways. There’s the GP who chooses to minimise the threat in his mind and aggressively deflect doubt because he’d rather pretend it’s 2019. Then there’s the nurse, who grimly acknowledges the situation and tries to mitigate the risk where they can, without becoming too miserable in the process. Other people - very many people, it seems - just aren’t acquainted with much of the information I’ve gathered above, though. They’ve had their jabs, shrugged a shoulder and carried on, without giving much consideration to the gravity of the situation. You might argue what the point would be of giving it that much thought. Personal choice. I needed to know as much as possible. When Bulls*** Johnson said we didn’t have to wear our masks any more, I did not tacitly assume that that statement was equivalent to “it’s safe now”. No, I bore in mind that they are concerned greatly by The Economy and if x% of us get nobbled every year in the course of feeding it, so be it. It’s a cynical numbers game in which no single individual matters at all. We’re just a set of identikit worker-consumers, sleepwalking into danger. Much of the frustration I was venting in my original post is caused by a big chip on my shoulder about people expecting me to go along with something that they have decided for me because I’m apparently like them. I don’t like this supposition that I think and feel the same about it as the majority and its implication that if I don’t then I must be wrong or have something wrong with me. I’m not very inclined to surrender my safety to a society like that. They make too many tacit assumptions, they don’t care enough and they do not get to terrorise and humiliate me like that and then just expect me to come running back for more.
Arx said:I want to minimise the number of times I catch it, because it is NOT the same as a cold or flu, even though the initial symptoms may bear some resemblance (as far as recent variants are concerned). Whoever heard of long cold?
to be honest I'm not sure if anyone is getting so called long covid these days. The numbers are going up because diagnosis is complex and there is a diagnostic backlog but I'm not aware of any evidence that suggests people, vaccinated people, are getting covid and developing long covid symptoms now. My understanding is that long covid is just a form of Post-viral fatigue syndrome which is a rare complication you can get from most viral infections. And now immune systems are used to covid there is no reason to think Post-viral fatigue will be more common with covid than any other virus.
I just wish with the vaccines that we had been given a choice like in some countries about which one we could have! I want novavax or the French one we had a deal for but then bojo rejected! Anything but the mRNA. I agree that it was wrong to do the children, they pretty much all had it anyway because of school so it didn't likely help and potentially did harm. If it did actually stop the spread then that might have been different, but statistically it only reduces spread as much as mask wearing!
Yes - we are also still being really careful too. We still don’t eat inside in cafes or pubs - if we have a meal out or takeaway we sit at outside tables - even in November! If we do go in a shop or supermarket we try to go when it’s really quiet. To be honest I’ve got completely out of the habit of shopping - I don’t need all the useless tat that most shops sell. But I do sometimes feel like we’re living on a different planet to most people in the U.K. who seem to treat Covid like just another cold virus. And the vaccines - I’m just keeping my fingers crossed that the potential risks of them that some fear don’t turn out to be true. The long term effects aren’t known. Ultimately though without them so many more people would have died - so what choice was there really? I do think though that vaccinating young children who had already had a Covid infection was ridiculous. They had immunity already once they’d had Covid and the vast majority didn’t get serious Covid at that age - so the risk benefit balance was totally different.
It puzzles me. I don’t understand how people can conclude they should throw away their masks because covid is never going away. That’s like throwing away your sun tan oil because the sun’s never going to stop shining (in our lifetimes, anyhoo!) Feels to me like what they actually want to do is forget it exists. ‘Living with it’ actually means ‘pretending to live without it’. Which I can sympathise with… flip knows it’s been a horrible experience. But denial will only get you so far. But I’m also desperately concerned by just how many people think that the initial symptoms are all there is to it - people who may genuinely think that the virus has been made completely trivial, at least to them. I’m afraid they’re mistaken. Moreover, we still don’t know everything there is to know about this thing. Personally, it’s just too high a price to pay for a craft beer and gourmet burger with fairweather friends. Another common response is to say that it’s just one of a million things that could get you, so why resist? Well, that’s false equivalence. You can’t just lump every threat together, treat them the same and say there’s no point in resisting any one of them because we can’t resist them all. It just doesn’t work as an argument. And I think that’s because they’re not so much trying to present a robust argument than they are trying to rationalise pretending it’s 2019 again. Many of their arguments are thin because they haven’t put much thought into them or the situation. Perhaps because they don’t want to. I can spot a black-and-white / straw man defence mechanism response when I see one… I’m guilty of more than my fair share of those, I admit. Yes, I accept it’s probably impossible to avoid catching it unless you live alone on a desert island. But that doesn’t mean I should go mosh pitting. I want to minimise the number of times I catch it, because it is NOT the same as a cold or flu, even though the initial symptoms may bear some resemblance (as far as recent variants are concerned). Whoever heard of long cold? And that’s effectively a lifestyle choice on my part. I suppose in a way I’m lucky because I don’t have any kids going to school etc. I’m still able to control my environment to a large extent. Plus, I respect that different people have different social needs, so their choice of balance of covid risk vs risk of other types of harm is personal to them. I just worry that their choices are not as informed as I feel they should be, because if not then they’re potentially setting themselves up for a nasty surprise. I hope I’m wrong! But, to be honest, just as there is probably an emotional basis to many people’s post-lockdown mindsets, there is sure as heck one in mine… as I may have given away in my initial post! But I’m trying to work on it.
Yeah, my Dad (also we are sure undiagnosed autistic) has done loads of research too and is very frustrated when people won't take his advice (especially his MP!) In a way, that freed me from needing to do that research as it would only be duplicating effort when i could just ask him! Although we don't agree about everything so I have had to do my own on aspects which concern me (I do not trust the mRNA vaccine for example but he has taken it. I did take A-Z and would like novavax if I can find any).
The problem is, it is still not safe out there so we are still in our own personal self imposed lockdowns! Definitely bad for his mental health as he lives alone, at least I have my husband, although we drive each other mad! I know it can't go on indefinitely and we may well have to emerge before it is safe to do so if it never will be, but if we can wait until at least long covid is less of a problem, because that is the main thing we want to avoid.
I do not know what mental damage it has done to my husband or me though, as and when we do re-emerge how weird it would be and if we could ever go back to the old normal. He could I'm sure because he isn't the one with the medical vulnerability, although he can be a bit unsociable and there are ways we both kind of like the excuse to avoid some things, even as we regret others. I did like how quiet the real lockdown was, and the sense of everyone being in the same boat.
I so relate to this. Coincidentally I also did loads of research into the pandemic, I even wrote to several experts and got advice from some of the top researchers into the pandemic. I regret it in a way because I think if anything it made me worry so much more as what what I learnt was far from reassuring. I think the pandemic has had a detrimental impact on people’s mental health in so many different ways.
Because they need to work, shop, pick their kids up from school. And once you're doing all that you might as well take the time to unwind because if you have to do the responsible adult thing while feeling sick you're going to need some time to decompress to stay sane.
Kate Kestrel said:Other cultures are ok with mask wearing - because they have a more collective mentality - but western capitalist countries ar3 very individualistic and selfish.
True but they only wear them when they feel sick, not all the time.
AuTriker said:Why do we just expect to have x number of colds plus flu and covid every winter?
well in part because our immune systems need them. the lockdown has actually made this flu season worse. Peoples immune systems are out of practice fighting flu.
AuTriker said:The attitude of people who just can't be bothered to protect the vulnerable sickens me, people are still dying of covid and a new variant could arise any time. And people seem to think the vaccines stop spread, they don't.
Again its not a question of can't be bothered its that the damage to the many (of lockdown, forced self isolation) outweighs the benefit to the few. We've already touched on the negative effects on the immune system, that it needs a certain degree of exposure to stay in shape. Then there are the mental health issues. The job issues, especially for the self employed asked to self isolate. Then if you pay their wages for the lost time the lost custom can still hurt a small business.
I'm all for protecting the immunocompromised. But they are an exceptionally small slice of the populous so it makes more sense to build special systems around them to keep them safe rather than trying to force everyone else to do things differently. You have to balance the damage caused by your safety measures against the risk of damage.
Thank you all for your replies. I’m sorry for writing such an emotional deluge. Mind like a tumble dryer and these days I’m particularly prone to getting into these desperate, agitated, frustrated moods, after everything that’s gone on.
To be honest, after I posted it, I was concerned that maybe it would get deleted or I’d be banned. But seeing instead people make such kind replies that empathise and say how similar it is for them… that’s… well, I’m not sure how to describe my reaction but it’s a good one. Some of it is relief. Finally, people who properly understand. Thank you! I’ve struggled my whole life for credibility and understanding and it adds to the alienation, anxiety and low self-esteem when the majority of people are just not on the same wavelength. Especially when those people collectively seem to have it easier by comparison. Sure, I don’t know who all ‘they’ are. Almost all of them are strangers. But I’m different to the majority of them in a few ways. Especially this one…
I’m still a little bit in denial as I’m not good at being vulnerable with people. I know, this condition doesn’t have to be seen as a vulnerability. It’s more that I feel vulnerable as a result of this recent diagnosis. When it finally occurred to me to pursue it earlier this year, it was because I was desperately looking for possible contributory factors in the sheer distress I was experiencing due to work’s back-to-office policy and this whole ‘live with it’ thing. I had become accustomed to isolation and the level of control I had over my environment - my safety. Me being me, I also kept constant close tabs over the pandemic situation, including trying to learn more about its pathology as it continues to mutate. So I probably know a little bit more about it than the average person. I’m not a qualified expert by any means… but I have read things (from respected publications, btw, I’m not a tin-foil-hat cherry-picking devourer of conspiracy theories) that made me concerned enough that I didn’t feel safe. Imagine if the Mayor in Jaws was trying to force you into the water…
Anyway, that’s a whole other story/gripe/obsession in its own right. The point is I was looking for ways I could protect myself. I’d known for decades that I had ‘tendencies’. Fine, I thought, let’s see if I can get a piece of paper confirming that so that I might get some ‘reasonable adjustments’. I’d already started talking regularly with a private shrink about my troubles, with a view to trying to resolve or at least diminish/better manage them, so it wasn’t a cynical exercise. This was an attempt as self-preservation as well as trying to tackle the misery. So, I went through the process. An initial screening call put me at a 7 out of 10 and so I was referred. Fast forward to two weeks ago, I was emailed the full report. It included a table of 10 different diagnostic criteria. Every single one was ‘Met’. Well, that did it… high-functioning, yes, and able to sort-of get on in this world with a kind of pathological Endurance Mode. Trying so hard to make it work. But there we go… 10 out of 10. It’s like someone has chucked a grenade at my timeline (bit of stereotyped, idiosyncratic language for you there). In one sense, nothing has changed, because this is who I’ve been this whole time. But in another sense, I now have a life-long condition. Denial can only get you so far. I tried my best but the last two and a half years did for me. I tried my best but, once again, it wasn’t good enough. Meanwhile, ‘they’ go about their lives, casually and with their usual camaraderie. And I’m left surveying ruins. So many years…
Anyone here seen The Good Place, btw?