Unsettled by Trend implications, quite upset - anyone else get unsettled by this?

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! 

  • My tuppense worth as an old geezer is, I have often said "this is not my world"!  I can't get my head around this inlusive woke thing.  It makes no sense to me.  I'm not sure if this a result of my autism as I view my reality literally and practically and wokism just does not fit into my reality. I blame those who think ND is "trendy"on this inclusive movement nonsense. I find that point very demeaning to people who have been diagnosed with ASD --- as I have.  We all are considered equal by our creator, but humanity has distorted this "equality" within its respective social norms.  Until some sort of drastic social reset happens these fringe attempts eg wokism etc. will remain  bothersome to many. Until that happens this will remain "not my world" 

    Returning to Shardovan's point, irrespective of family, friends, or acquaintances, we as a group must tolerate social trends and their opinionations with a thicker skin and a laugh.  

  • I totally understand what you're saying and I think maybe your sister, though meaning well, doesn't entirely realise the impact of comments and memes like this, so it's good that you're telling her it upsets you so hopefully she can learn.

    I think of it like this, if our autism is so commonplace, why do we find it so difficult to access the services and support we need?   If autism is truly commonplace then the general population and services would be more clued up in providing what we need and reasonable adjustments would  be easier to put in place etc.

    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.  At the moment many NT people think that autistic people can just 'get on with it' and 'stop making a fuss', I personally am having to educate alot of idiots in housing and medicine at the moment and althpugh draining, I won't be told my difficulties are insignificant.

    We got to midlife struggling and not knowing so we bl**dy well deserve and demand to be treated well now.

    Take care

  • Sadly this all sounds very familiar when talking to my family members. I’ve come to the conclusion that I’m just not going to discuss it with them anymore, precisely because it upsets me to have them through doubt on the validation of having a diagnosis. Makes me sad that it’s come to that, because I know they love me, but I don’t need their doubt and gaslighting in my life. 

  • Hi Shardovan,
    Thanks for starting this thread. I was born in the 70s, my mum took me to the doctors when I was 3 and a bit as I wasn't talking properly. The doctor sent her away saying it was because I had her and 3 older sisters running round after me so I didn't need to speak. Autism wasn't really recognised or diagnosed for many of us.
    I have one sister who is sceptical, she's had her own struggles with anxiety and depression. I don't think she realises that autism or autistic traits are genetic. So my behaviour, her own and those of my parents will have been seen as 'normal' when we were growing up. So I think shes probably on the 'its all a trend bus' without realising why.
    Autism is more widely recognised and diagnosed. World poulation is bigger so there are more autistic people. We also have wider access to media and people are self advocating, so it's more widely known rather than stuck in the back of a medical journal.
    I have quite a good job and get told I should go for promotions. I won't unless I know I can tick all the boxes and that I'll be in a supportive environment. I decided to be open and people are surprised at me saying some of the things they think I do with ease, either at work or socially, take a massive amount of effort and can drain me.
    For me the words 'clinically significant impact' always stick out from my diagnosis. Someone finally acknowledged how furiously I am paddling to keep my head above the water, that if I wasn't autistic I might not have the same difficulties. I'm not sure if knowing earlier, life would've been better through the 70s, 80s and 90s but I'll never know.
    Hope you're feeling OK, I have a poem called infinite loop about being in a spiral and its not a great place to be.

  • That’s a good point. And I can remember in the late 80s and early 90s ME/CFS sufferers getting a hard time and lots of assumptions that ‘everyone’ was claiming that for themselves to be lazy. Very humiliating times then for anyone living with that.

  • Sorry I've only just seen this (not been online today) and don't have much to say that hasn't been said. I think your confusion and upset is understandable, not to mention your focus on it. This is, after all, how the autistic monotropic mind works!

    I think neurodiversity (not just autism) is more visible now than it was even ten years ago and I guess some people think "Is everyone neurodiverse now?" Even I slip into that thought process sometimes, particularly when seeing very successful people who claim to be autistic and I think "Really? How are you like me, exactly?" Maybe they really are autistic, just very high functioning, or good at masking. Or maybe they're not autistic at all, I don't know. Obviously not everyone is claiming to be autistic, but we are more visible and that can make people over-estimate how many of us there are. Taking an example from my other minority identity, people consistently and enormously over-estimate how many Jews there are in the country and in the world, because we happen to be more visible than some minorities, so the perception is that there are a lot more of us than there really are.

  • Hi there I understand that this sort of thing can lead to thinking is all this true am I genuine. Just to let you know in the 1970s there were people saying such things as “well it is fashionable to be mentally ill these days” This sort of thing can happen where assumptions are expanded by a less real  increase in things or just a bit of public recognition leads to resonant pattern increase in others minds.

    Yes there has been an increase in diagnosis since Lorna Wing got the criteria changed but it is not loads of the population.

    I myself had some doubts about stuff so I checked and checked and even if there was a small probability there was some say category error with some of the many parts if the spectrum it would be epistemically innocent if there were one or two questions.

    Don’t feel guilty about going into a spiral. It shows you think feel and consider and want to seek the truth. If you are so open to seeking the truth you are epistemically innocent even if there were or are some consideration. 

  • The difference today is that people can find out about it more easily. 30 years ago most people did not know a lot about autism or ADHD and there were misconceptions.  I learnt most about it once I had access to the internet. I think some people who do not understand may see it as an excuse, but for those who now understand themselves it makes a big difference. It is sad that some people think this way.  I hopefully can help others who contact me at work because I understand to some extent their difficulties. 

  • And I’m also genuinely confused by the real percentages. It must surely be a small minority of us who are autistic (diagnosed or otherwise) - a twentieth of society at most? Though that feels too high for any present living generation, maybe the next? 

  • Oh for sure nerd is no longer a derogatory term it’s a badge of honour. And that’s nice. But it’s not quite that that I mean. It’s that I feel societally implicated in the ‘he just wants the full set’ suspicions that jokes like the above one imply. And that hurts after a lifetime of invisible struggle that will remain. 

  • Ive been (reliably) informed that geek is the new hipster. Make of that what you will.

  • Thanks! I’ll mull it over. Maybe I’ll leave it be and then nobody needs to worry about writing something only for it to vanish. 

  • And even though I was nice about my sister it still feels a bit… off. 

  • if you cant vent here, where can you?  You are not alone in these thoughts.

  • I might ask for this thread to be deleted in a bit, my post was a bit too stream of consciousness while I was feeling especially irrational. And i don’t want that wonky thinking infecting anyone else. Bit self indulgent sorry. 

  • Thanks Astrid, you were very kind and helpful as always. 

  • I have to agree.   it makes me more nervous about telling people.

  • Private message you

  • I won’t be able to think of anything else until someone else replies (my own researches won’t do anything for me when I’m like this, it’s all paradoxical nonsense out there), so I’ll be massively grateful if that happens this afternoon. I need to get on with some other things. 

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