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! 

Parents
  • This thread may be of interest.

    I haven't worked out % or checked to see how robust the figures in the link are:

    https://community.autism.org.uk/f/health-and-wellbeing/31589/why-would-the-uk-have-the-highest-rates-for-autism/290053#290053

  • Thanks Debbie. I see that in the UK it is 0.7% of the population. Clearly an underrepresentation of the true autistic numbers (including undiagnosed and unaware). The question is by what factor should we multiply? I’d intuit about six or seven times, maybe at most ten. Let’s split the difference and say 8.5. That’s less than 6%. So that reassured me. Until someone here suggests that the multiplication factor should be doubled or something! What’s the general feeling on my intuitively guessed number? 

  • 1 in 4 people with autism are undiagnosed according to 'research' in this presumably US article

    https://www.verywellhealth.com/high-functioning-autism-260305

    I don't know what the 'research' is as it's difficult to read on my phone (if stated).

  • 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. 

    • That isn't one in four of the whole population. It means that 25% of people on the spectrum are undiagnosed, which is not surprising. Older people and those born female are woefully under represented as autism was for years considered a male condition. People born before the 1980s may have been considered eccentric, abrupt or with a mental health condition if they are high-functioning.
  • So, I multiplied that 0.82 by four and got a number just over 3%. Which is one in 30. That kind of aligns with one or two autistic children in the average primary school class of that size. It will grow with each generation but fir now I know I had it basically right: we are diffusely spread not two a penny. It’s important to me to know that for many reasons. I feel less freaked out now.,thanks so muc, and that article in particular is maybe the most useful thing that could have been sent my way today (thanks so much Debbie) , equal to some private and much appreciated words from a concerned person with a big heart. 

  • Ah, sorry for being so thick before. I always see the worst and even re-reading it doesn’t help me until someone points out kindly what a div i have been 

  • The Lancet article says this re those undiagnosed:

    Estimating underdiagnosis in autistic people

    Out of a population of 56.5 million; we estimate that 463,500 (0.82% of the population) have been diagnosed autistic, and between 435,700 and 1,197,300 (58.63–72.11% of autistic people; 0.77%–2.12% of the English population) may be autistic but undiagnosed as of 2018 (see eTables S12–S14). Fig. 2 provides estimates of numbers of diagnosed autistic people and lower- and upper-bound figures for true prevalence based on our projections. We estimate that between c. 152,900 and 489,900 people aged 20–49 years (52.47–75.47% of autistic people) and between 251,100 and 591,600 people aged 50+ (92.11–96.48% of autistic people) may be autistic but undiagnosed.
Reply
  • The Lancet article says this re those undiagnosed:

    Estimating underdiagnosis in autistic people

    Out of a population of 56.5 million; we estimate that 463,500 (0.82% of the population) have been diagnosed autistic, and between 435,700 and 1,197,300 (58.63–72.11% of autistic people; 0.77%–2.12% of the English population) may be autistic but undiagnosed as of 2018 (see eTables S12–S14). Fig. 2 provides estimates of numbers of diagnosed autistic people and lower- and upper-bound figures for true prevalence based on our projections. We estimate that between c. 152,900 and 489,900 people aged 20–49 years (52.47–75.47% of autistic people) and between 251,100 and 591,600 people aged 50+ (92.11–96.48% of autistic people) may be autistic but undiagnosed.
Children
  • So, I multiplied that 0.82 by four and got a number just over 3%. Which is one in 30. That kind of aligns with one or two autistic children in the average primary school class of that size. It will grow with each generation but fir now I know I had it basically right: we are diffusely spread not two a penny. It’s important to me to know that for many reasons. I feel less freaked out now.,thanks so muc, and that article in particular is maybe the most useful thing that could have been sent my way today (thanks so much Debbie) , equal to some private and much appreciated words from a concerned person with a big heart. 

  • Ah, sorry for being so thick before. I always see the worst and even re-reading it doesn’t help me until someone points out kindly what a div i have been