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!
If ever you doubt you are autistic, read your comment above! That is definitely a brain that needs resolve if ever I saw it.
It is something that we need a more updated answer on. The 1 in 100 quoted on the NAS website is so hopelessly out of date, probably based on research at least 10 years ago. Your intuitive estimate is far more accurate.
https://www.autism.org.uk/advice-and-guidance/what-is-autism
"Government prevalence surveys last estimated that around one in 100 people are autistic. However, because these are estimates this is not definite. Other surveys and international estimates have come up with different prevalence estimates. Most of them suggest autism prevalence is higher. The National Autistic Society thinks the UK governments should do more research into autism prevalence to find an updated figure. Until that research is done, we believe that more than one in 100 people are autistic, which means more than 700,000 people in the UK.
Having an accurate prevalence figure is vital. We all need to know this to improve support and understanding, and to create a society that works for autistic people."
As above how are the government ever going to allocate adequate resources to supporting autistic people if they are vastly understating how many of us there are
That’s very kind Lu C. :-)
I agree! I got into this very hyperfixated state about working out THE answer for about an hour last night, but made an effort to park it as I’ve gone into endlessly looping mode so often with stuff like this in the past (cross referencing statistics and needing THE answer). I sat with a calculator dividing 100 by different ‘one in…’ numbers and seeing the resulting percentage and seeing which ones felt too low and too high on an intuitive level. In the end I settled on a 1 in 19 to 1 in 23 range as maybe being most likely. Based on… instinct? What rang true? How scientific!
Sorry if this has upset or offended anyone.
No one who has done any research. He has many ND family members. He worked in the prison service all his life.
I’ve read that up to 20% of the population may be ND but that includes dyslexia, ADHD etc.
I seen various estimates of how many are autistic but the highest estimate was around 1 in 40, ie 2.5%, which I suspect is still a bit high.
Awake again. I fail to believe it's is 40%. After the day I've had today - unless they're all as adept at masking as we are, and as tired as we are, and as zonked out (yet totally wired) as I am right now - no chance!
Thanks Tulip52. Mind if I ask if you can recall who said 40%? That’s kind of made me take a wobble again, but a smaller one as I think the one in twenty-ish stat (inclusive of the undiagnosed) that seems to be the in-thread approx consensus feels more correct to me.
We know we are autistic. We shouldnt have to explain. To some it may be obvious, others might say.....your not autistic! But how would they know, they wont witness those repetitive behaviours, distressing times, obsessions, overwhelm and melt downs that we experience. They have no right to say otherwise. I would compare it to me saying to someone, your not human or your not dissabled. Once someone in a managerial position within mental health services, a neighbour of mine, gave me this lecture about exactly what you say everyone wants to be autistic he got quite agitated about it. I have since stopped being so friendly with him, because i dont like his opinion, and iit upset me a little. I wont justify and explain to him why i am autistic. No doubt there are a lit more of us, some one said up to 40% of the population, so who knows. I think theres a difference here, in being brought up in a supportive loving environment and knowing you are autidtic from an early age and being brought up having experienced adverse childhood experiences and not kniwing we are autistic. I kniw which one i woukd choose. Im not sure that this final comment is relevant, but i think i know where i intended to go with it but.......
The currently published data for rates of diagnosis in children are around 1 in 36 in the US and I believe UK numbers are similar. However still many more boys than girls are being diagnosed, therefore the true prevalence is likely to be higher. Maybe 1 in 20?
https://www.nimh.nih.gov/health/statistics/autism-spectrum-disorder-asd
Shardovan said: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?
Yes 50/50 definitely far too high. Like others have stated would we be struggling so much if the prevalence was that high? No of course not. Most of us have been through school and life feeling like the odd one out.
I'm not sure that anyone can say for sure that the prevalence is actually increasing or if it is just that society is getting better at diagnosing it earlier. If it is say 1 in 15 or 1 in 20 that means there are huge numbers of undiagnosed older people, many of whom will probably never be diagnosed.
The 1 in 2 reports you have encountered are so far off the current diagnostic rates. A quick google search produces all kinds of scaremongering that are about as credible as the claims that autism was caused by vaccines. One particular quack scientist claimed a few years ago that the rate would be 1 in 2 by 2025 due to chemicals in weed-killers. Stuff like that gets shared online and before long people are quoting it as fact.
Actually we don’t have to speculate there’s been research into the rate of undiagnosed autism in the UK and they’ve come up with a fairly broad estimate of 1.6% to 2.9% of people being autistic. https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00045-5
On the other hand ADHDUK claims are true rate of people with ADHD is somewhere around 3% https://adhduk.co.uk/adhd-diagnosis-rate-uk/
Assuming having ADHD and autism was independent you would expect there to be about 5.8% of people Who have either one or the other or both. Of course they’re positively correlated so it’s actually likely to be less than that. (you would only add the percentages if it was impossible to have both ADHD and autism).
Of course this isn’t very precise. There is literature on the probability of you having ADHD if you also have autism. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8918663/ ) however the range of uncertainty is massive 50 to 70%.
If we take the 2.9% of people who have autism. And the 50% of autistic people having ADHD The probability of someone having both autism and ADHD would be 1.45%. Give that then apply the inclusion /exclusion principle The probability of someone having either autism or ADHD (or both) would be, 2.9%+3%-1.45%=4.45%. Which means on average a secondary class of 22.4 kids should have 1 autistic / ADHD kid in it. So the vast majority of school classrooms will have at least one student with ADHD or autism. So no I guess it’s not that rare. But autism on its own is a good bit rarer.
Hey there Lu.....Shardovan not only found this thread.....he started it....7 months ago......and is often to be found sharing his wisdom about the place.
Happy Christmas Shard !
Nice to see you back - and delighted to see that you and OOS had a good chat through all this stuff yesterday. All good.....its what this place was, a while back.....and continues to be, in odd spurts.....being able to talk through our stuff with people that get it. Golden.
I'm very sorry about your wobble last night but I'm glad you were able to find this thread, not only because it's meant you're able to get support, which is great, but also that I got to read it too. It's been invaluable reading, lots of useful advice and wise words to read and ingest. I hope you're feeling better now about things. If you ever need to chat then feel free to reach out to me anytime, though there's better to talk to than me lol.
Have a lovely Xmas. I hope it's a good time for you.
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 :-)
Many thanks Lu C, and I wish the same for you - knowing with more resolute certainty that you are in a struggling minority and that you have found your tribe in this community.
Youre right that I started this thread some months ago and it rested for a while, but I had a major wobble last night (my whole sense of the numbers was challenged by a valid alternative opinion) and sometimes when I get hyper focused off the back of such a trigger I need to check in with other autistic voices/experience/knowledge to see if I truly need to recalibrate and, if so,by how much. I can’t rest until I have. I feel better today for the responses kindly made by you and others. Hope you have a lovely Christmas.
Hello DistantButHere.....longtime no see....and an odd place for you to pop up ? - ButLovely to see you.
This thread is 7 months old and Touay hasn't been around for a long time.
I hope all is well with you.
Kind regards
Number
Excuse me? You know them personally do you?
It's definitely not commonplace. If it was, then we would have support, lots of resources and wouldn't have to mask every day just to 'fit' in and be accepted in this world. Unfortunately the term "everybody's a bit autistic" is said a lot now, I've heard it from a lot of different people and it's really frustrating because it makes it feel like I've got imposter syndrome or maybe misdiagnosed. I have to remind myself regularly that this isn't the case, but it's difficult to remember this.
Shardovan said: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
No, you definitely aren't! But I understand how it must look that way because that's how it feels for me as well. At times I'm so confused, feeling so distant from myself because I just don't understand and it's so difficult to get my head round everything.
Just remember who you are is valid. You aren't hiding behind a label, you belong here, and you shouldn't have to feel this way.
You definitely aren't alone in feeling this way. I hope things are better for you now, I see this is from earlier in the year.
P.s. I do believe that we are evolving towards a future generation where that 50/50 will come to pass and maybe even tip the other way. But it’s some not inconsiderable number of decades or at least a couple of centuries away. The early-detected numbers in schools etc. (about 1 or 2 in every class of thirty last I checked) do indeed seem to jump noticeably with each decade that passes. And that will continue I’m sure.