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!
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
There are people who make jokes about every other thing specially if they don't understand it or support it. There's no winning with those. They have probably never read the numbers or care about them. Probably never had a loved one who has autism openly, probably don't have a clue how it all feels or looks like. That's the only explanation that I see to why they joke about it as if it's just a new stylish sushi recipe or something.. people still need lot of awareness and education to do. We don't need to care about every each opinion. It doesn't make your identity any less real, it doesn't make your journey any different. Your are the one aware of yourself, your struggles and nobody can tell you that it's not valid. I believe you.
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 Lancet article says this re those undiagnosed:
That VeryWell Health article isn't saying that 1 in 4 people are autistic, but that 1 in 4 people with autism are undiagnosed.
That one in 34 feels way more likely. I’d possibly even round it to 1 in 30. Just to make sure I’m not casting the net over too few of the truly unseen. That’s settled me a bit. I’m sorry for stressing so much earlier, I get fixated when something I thought I had figured out seems to tip on its axis.
Or have I missed something?
Wait, I think you’ve added those two percentages together but they are percentages of other percentages if that makes sense. There’s no way a quarter of the population is autistic.
One in four?! Autistic? Really?
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.
Shardovan said:What’s the general feeling on my intuitively guessed number?
I don't understand your question. How would I know a "general feeling" and what is an "intuitively guessed"?
Your post is exactly what needs to be said here by you - I am reassured by your confusions. I have similar spirals. Life's a beach - we share our joys and confusions. Its community.
I hope you are enjoying your weekend Shard. Number.
you're definitely not alone in feeling the way you do, and I'm sorry you have been so disquieted by it. I hope you are feeling a bit better this evening.I've thought similar things recently, why do so many people seem to be identifying as ND? Are they really ND and the numbers are really underestimated or is it bandwagoning and being ND is the latest hot thing to be. I really hope it is not the later as this is so invalidating for those who genuinely struggle with the day to day challenges and long term I fear it will damage the acceptance and accommodation of the ND population. It also feels like a societal way of 'controlling' certain people by invalidating them to others, kind of narcissistic, sorry if that sounds a bit conspiracy theory! I would love to hear other peoples opinion on this subject too.
Here's a Lancet article re England:
https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00045-5/fulltext
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).
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?
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
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?