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!
Shardovan said: How would a lack of progressive thinking/values help people’s socio-economic well-being?
It wouldn't and honestly sounds like same old xenophobic scapegoating.https://youtu.be/-XhNMFIhK50?t=210
Curse you and your gift for common sense! [shakes fist]
Not really, it's right to pull me up on such sloppy wording. I don't know what I was on about, I'm definitely being extra thick this last few days. Extra-tired I think.
Oh, I just realised I did the sum the wrong way round. Debbie had pointed out what you also kindly have done. But I still messed it up. I can be so stupid, you wouldn't believe how thick I've made myself sound elsewhere today! But instead of multiplying by four I should have done so by 1.25. Is that right? So that 0.82 becomes... hold on... calculator needed...
...but that's still only 1.1%. That feels low. My ex-SIL told me that the primary school she teaches in has an autism diagnosis rate of 11%. I though that sounded very high. She did believe that her school did have an exaggerated number for a host of complicated factors, including it being a deprived catchment area with high incidences of fetal acohol syndrome etc. compared to most places. So... co-'morbidity' etc, etc.
Take a school from a more la-di-dah area of the city and I bet it would be a much smaller number. Split the difference perhaps for the true average in the youngest generation. So perhaps 5%? And less for each older generation as autism does seem to be on the rise not just as a result of detection. So maybe we round the overall poulation from child to the elderlay as... 3ish% as my 'incorrect' calculation before landed on anyway.
Shardovan said: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.
This is the thing though there is no benefit to self identifying as anything that would lead you to have less privilege and get picked on even by family. It's not something people would just d for fun or to try get something out of it, it's a pain in the backside to be in any of the "other" categories. So teh majority will be doing so in good faith because they know deep down it resonates with their inner truth.
Shardovan said: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?
it's true it's a lot more that Chris Packham says it is because you also have to factor in the people that can't or won't get assessed for whatever reason, but we are a minority neuro group because if we weren't then the world would not be primarily run by or for neurotypicals.
Shardovan said: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?
Answers in order of questions:
No.
Yes, but that's because they are ableist most people unfortunately are to some degree or another, the ones that say crap like "but you don't look austistic" betray the fact that they think autists are permanently rocking back and forth and screeming about the lights in a corner of the room somewhere because they are too thick and narrowminded to know what a spectrum is.
No, not only did you have suspicions for long enough to seek an assessment but when you did you had those supicions verified by a qualified psyche.Also I'm seconding what @nas85447 (whatwouldnannyoggdo) said.
I’m not sure I understand what you mean. How would a lack of progressive thinking/values help people’s socio-economic well-being?
Ah yes I see what you mean now. Crossed wires sorry
We so are!
i just have no choice but to fight, Ive been running all my life and now I have a strong sense of protecting other vulnerable people as well as myself. I too have had a very negative set of upbringing and life experiences and I now 'fiercely/fearlessly protect/mother' myself because no one else has or will. You are doing brilliantly, keep on
I'm glad too, it's really important that people are able to find and read about our feelings and experiences, so yes please don't delete
grooveisintheheart said:I think as more people are rightfully diagnosed, our voices will get louder until things start changing for the better and our lives may then become easier.
I admire your your sense of fight rather than flight. I lived a life of consistant negative experiences since childhood never understanding why I never seemed to fit in, though my symptoms were of a low enough degree to allow me to mask enough to get on with earning a living, and raising a family. Nevertheless it has been an ongoing struggle --- for me quite late in life with a diagnosis only two years ago at age 76.
the wokists, if they thought they could use us ti gain power, would 'adopt' us, but the result would be like the abuse real trans people are now subject to because of the 'trans movement'. and lets not forget that many of the children coerced or tricked into life destroying medical interventions in he name of the trans ideology, are simply confused autistic kids.
Here, here, There are only 14,000,000 million of us globally and where I ask is the "inclusion"? Cetainly not in wokism!
i respect your view and your sensitivities --- but inwardly laugh owing to the realities of past and present socio/economic conditions we live within. I hope this hasn't caused you offence. Perhaps you may try to laugh at your sister's view of autism? ;-)
We are more resilient then.
I don’t. But I accept that others do. We’re either (by NT terms) ‘too much’ of ‘too little’ of any given thing. I think I got the ‘too much’ for sensitivity.
I think I have the other side of the autistic coin- overwhelming empathy and so I worry about offending even those who’s views make me say ‘not my world’ from the other side. So I can relate strongly to your sentiment, but as a mirror image not an alignment. I do find myself often noticing that normality is a kind of collective insanity in an unspoken societal contract. But ‘wokism’ is the least of that. It’s a faltering but healthy step towards a significantly better future for all.
I think autistic people have a MUCH thicker skin than anyone gives us credit for.
Offence??? certainly none taken. That is another BIG problem I have with a large majority easily taking offence. --- Its not my world!
p.s. I respectfully disagree on ‘wokism’. There is nothing to fear there and I hope I didn’t come across as sharing those particular views with you, no offence!