Published on 12, July, 2020
So last night I had an hour’s conversation on the phone with my lovely sister. She’s great in so many ways and has helped me out a ton in recent times. But there’s this thing that comes up now and again since my diagnosis. It’s not about me, at least not overtly or consciously. Despite initially saying ‘no, you? Rubbish’ when I initially told her about my diagnosis, she did ring me back later that day to say the she’d meant well and shouldn’t have tried to take that identity away from me. And since then she’s never repeated any statement like that first one, instead agreeing that it explains a few things, etc. and like I say, she’s great. Just wants the best for everyone, generous to a fault, all that. And yet,… even though she’ll add an ‘and I don’t mean you’ she will occasionally bring up this thing of how people now - especially Gen Z or whatever they’re called - are so attuned to all these neurodiversity labels that they won’t hesitate to grab one for themselves, not in most cases (as she is at pains to make clear) inauthentically, but her implication is almost something like saying that the majority of society turns out to be autistic, not the minority. She referenced a meme she’s seen the other day. It was a picture of a queue of many thousands of people at some event, going on for miles. And underneath it said ‘Me, waiting for the launch of Autism’. At first I didn’t understand but she explained that it was saying ‘this is the new trendy thing to have, like the next iPhone, I’m getting me one and then I can be special too… just like every other person I know.’ That kind of sentiment. And when she said this I started feeling really sick and upset and embarrassed. I said, ‘I actually find that [not her, the joke itself] offensive. Do you think I paid a thousand pounds I couldn’t afford after a lot of deliberation and exploratory talks with a GP, after several breakdowns since turning forty and many struggles over the years, because I wanted to be on trend?’ She did make it clear that ‘oh I don’t mean you’ but I did feel very inadvertently devalued in that moment, my identity slightly trivialised. Even though I know she wouldn’t have consciously ever wanted to convey that and I don’t even think that’s how she secretly thinks. She’s pretty accepting for the most part and can see how I fit the bill and why I needed to know and get external confirmation from experts that I’m autistic. And yet it still left me feeling shaken, and I fixated on it a lot afterwards and again since waking up today.
I also said to her ‘look, I know it’s way underdiagnosed. Chris Packham said the numbers are half a million UK, but I’m sure it’s way more.’ I said I’d multiplied by a factor of six to about 3-4% for what was a truer societal picture. She said ‘no it can’t be, it must be waaay more, look - every other person I know at work or online calls themselves adhd or autistic or whatever now. It’s most people really.’ And I was left feeling really confused. Can somebody help me with perspective here? Am I/are we (here) the 1 in 30-ish or not? If not, then what the heck is this support community for the allegedly commonplace all about? Sorry, this has unbalanced me way more than my well- meaning sister would ever have realised, but I feel pretty embarrassed and a bit sick with worry over it all now. Have I been making way too much out of something that’s ten a penny? Have people I know at work who I’ve told been rolling their eyes when I leave the room going ‘god, another one getting on the bandwagon?’ Am i the under-achiever I used to think I was after all, and merely using a label to make myself feel better? No! And yet it must look that way -excuse making- to the gazillion (allegedly) fellow autistics in high power jobs and doing all the conventional things with ease! They are living examples of ‘don’t use it as an excuse mate, we didn’t’ and until last night I didn’t even know that so very many existed. If they do! Do they? Typing this makes me rallies I’m more upset even than I realised. I feel like there’s not just imposter syndrome in the mix but a sort of ‘but can’t you see that I’m one of the REAL ones?’ As though I were in an autistic line up comprising most of society. God,I hate getting into these spirals I need to know that how I’m wired is not commonplace, that the majority are still by far and away the majority. And yet I keep being informed that everyone my family knows and half the people my friends know are neurodiverse or autistic. (Though maybe like attracts like and propagates it too - so there must also be NT people who barely encounter the neurodiverse as they attract their kind to them? Maybe oversimplifying) And that joke/meme thing really hurt. The joke itself, not my sister’s imperfect navigation of it. Im very unsettled and confused. Someone please help me out of this spiral. Thanks!
Just giving this thread a bump as today I heard it suggested that autistic/neurotypical societal ratio may be 50/50 or 60/40 in favour or neurotypicals. That’s definitely too high isn’t it? I feel like just as I was getting a grasp on things the world has tilted on its axis again and now I’m back at square one. If it’s 50/50 (inclusive of the um-diagnosed or oblivious) then wouldn’t society already be shaped for us quite comfortably? I still feel like one in 15 is the very highest it could be and that 1/30 for my generation (middle age) in particular would be the highest possible figure. Does that sound about right? Has any new useful data emerged on this? If I’m less societally scarce than I thought I was then I’d rather know and begin to move back towards accepting that I’m simply not coping as well as the supposedly autistic hoards making up nearly half of society. My peace of mind feels in jeopardy and while I know it’s my own ‘fault’ for letting a thought spiral take hold (hyper fixation/mono tropism I guess) I’m in this place now… and could use some other perspectives again to help tilt the mirror to the right degree. Please help me work out what that is! Then maybe I can sleep… or try to.
Shard, where did you come across it, can you post any links? The reason I'm asking is because often what we read or hear is only one perspective. Even if it's proper research. What's the agenda of the person or people behind it. This is always on my mind. Your stats might be true but it doesn't invalidate your struggles. I remember something you said, I saved it, I'm going to quote it back
"I think also that anyone who's reached the point of 'I must know' has suffered more from their environment to the point of being ready to lose their mind if some reason isn't supplied. Whereas most of the 'we're all...' crowd will likely never likely get to that place of 'I must know'. Because there's nothing *to* know - they really are 'just' on the fuzzy border and not debilitated in any remotely comparable way"
If it was so high, either more people would be struggling or the collective human environment would be easier to manage. I do think more people are coming forward as life does get faster and louder. I think a lot of people probably have traits but they may come from a different root and thus not autistic.
I have heard neurodivergent people make up about one in 5, obviously this covers more than autism.
P.S. I've enjoyed re reading this thread and circumstances aside, it's nice to see you pop back in
Thanks, out of step! To be honest it was one person’s valid opinion/guess/calculation based on their observances. Not a study or something. They are themselves autistic and I think that’s why it has shaken me. I hope my resistance to the idea of that degree of prevalence is not me wanting to to be ‘special’ but rather a genuine need to know that how my diagnosis helped me frame my struggles was not just me going way too easy on myself because of ‘were all a bit…’ being the truth of things after all. I wish one version of reality would just sit still for a while and let me get my bearings…
Actually, that 1 in each mainstream class of 30 is possibly a bit too low these days, but 2 (as a mean average) possibly too high. It’s probably a mean average of 1.7 or something, maybe making for a youngest generation with 1/19 kids or something. Balance that against my generation and the one(s) in the middle, and 1 in 20 feels about right. Less scarce than it was, but very far from an era of inheriting the earth!
Awww cheers. Sorry to hear you had inadvertently self-inflicted insomnia (in a way, so did I!) but I was very glad to have your thoughts come back at me from the void in my hour of need :-)
I had diet coke up to about 10 30pm and forgot it has caffeine. Yes it is a lonely place to be but that is why we have this place so we can send it out into the ether and see what returns. I love it when old threads like these come back. It shows how our thought processes work. My street lighting one gets resurfaced about once a year as I get stuck on that. I think 1/30 is a sensible guesstimate. My reasoning being that's one child per school class. Whether it's in 2023 or was in 1976.
Have a wonderful Christmas yourself. It's been great to see you back here. Thank you for giving me some interesting mid-night nobble.
Thank goodness! I agree that it’s more than 1in 60. To me, my intuitive guess of 1/30 (for my generation anyway) approx feels most plausible. But I just needed a bit of backup from others to feel renewed confidence in that figure. Ok, I feel a bit better now - thanks so much! Early hours monitropic spiralling about this stuff is a lonely and upsetting thing to go through. Nobody’s fault, just the way I go sometimes. And only a thread like this can truly help, so bless you for being a night owl and guardian angel when I most needed one. Hope you have a great Christmas.
It's definitely not a third of the population!!!
I should've just said that an hour ago
Night, and thanks! Even just that ‘not one in 2 or3’ is very helpful to me right now. My anxiety is less extreme now. I’ll try and sleep now too, that would be sensible!
I have no idea and I'm really sorry I can't offer you reassurance and i understand that is probably what you need right now. I've heard autistic people make up 1/60. I think it's more than this but not one in 2 or 3!
It depends in which circles you operate. I know a fair few neurodivergent people. I know people who have strong traits in one area but they dont seem to show in other areas (these are good friends who I can talk openly with about being autistic), I'm confident they are not because they don't "get" the experiences I have when we talk about it.
I need to go to bed! Learn how to juggle or something. Busy hands = occupied mind. I hope your inertia shifts. Fwiw I was in this place a few nights ago. With the stuckness.
What’s your own feeling on the actual likely percentage? An actual ballpark number? For ASD specifically? Level One as a subset even more specifically. I don’t trust studies any more, they always seem to have it too low. And yet surely 60/40 is way too high?
You sound a lot like someone I know and also myself in the not too distant past and some present. I joked recently to my partner that I am like a taxi driver and will keep going straight ahead unless I'm told to turn off. I know this element can lead to being really up or really down with no in between. I get the need for external influence. It doesnt make you pathetic, it makes you autistic and I'll have none of that language here please thank you very much!!
I’ve always had a big problem which is that the last thing said to me by someone can set the rules for the whole universe, and if that’s something that (without meaning to) upends my peace of mind too bad. The only thing that helps is if other external voices (my own thoughts alone will never be enough to settle the anxiety) offer a balancing counterpoint. I guess that makes me kind of pathetic, and I wish I wasn’t. Because when I get fixated on what’s unsettled me I’m no good to anyone, and end up exasperating good people who meant no harm in what they said.
Opinions are just that. And unless they've done a brain scan for the whole population, AQ50, in depth ADOS assessment, DISCO assessment, developmental questionnaire and - just to be on the safe side - telling a story from a book with no words about frogs, they know diddly squat.
Shardovan said:hope my resistance to the idea of that degree of prevalence is not me wanting to to be ‘special’
I'm guessing most autistic people don't feel special as they are too busy struggling with daily life. It's about wanting a fair go at life like everyone else.
Bluntly, if 50pc of the population were autistic I personally would have a much easier time communicating with more people.