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!
For starters neuro diverse is a much much bigger group than autistic.
autistic people are probably around 1% of the population. it might be a bit more but it’s not going to be a huge amount more. ADHD is estimated to be closer to 5 to 7%. also by some peoples definitions specific learning disabilities like dyslexia dyspraxia dyscalculia are all also neuro diverse conditions. I believe dyslexia is estimated to be about 10% of the population.
so yes if you bundle all of these different neuro diverse conditions together and treat them as if they’re just one thing then maybe it is a very significant slice of a population.
but that’s just a sign of ignorance not differentiating between autism and other conditions. autism is not a trendy fad that everyone has nowadays. And if people with neuro diverse conditions are more visible and more keen to wear that label it doesn’t mean that people aren’t worthy of special consideration because something is common. Because colourblindness is relatively common it doesn’t mean that people who are actually blind don’t require white sticks.
I know that’s not a great analogy but we are being asked to compare apples and oranges here. which is kind of a problem at the heart of it. slapping the label neuro diverse on things can sometimes be a bit meaningless. Because autism is very different from ADHD is very different from dyslexia is very different from Tourette’s etc. we have radically different presentations and require radically different interventions and considerations.
Thanks for taking the time to reply, Peter. I think that 1% for ASD is based on formal diagnoses so let’s multiply a bit to get a truer picture. 5% give or take a little just to be sure. So, if I add your ADHD figure to that we get 12%, then dyslexia added on makes 22%. So -allowing for other ‘disorders’ in there too, and some degree of overlap (apparently between 20 and 80 per cent of people with ASD also have ADHD) about a fifth to a quarter of people have some form of debilitating -if not uncommonly masked- neurodivergence. But at most, with Autism in particular we’re looking at 5-7% (mean average between all age groups) at most, currently? That set of figures I can cope with. It was the 50/50 that really shook me, but I need to learn to get better at insulating my knowledge of facts from the power of persuasively articulated opinion. Thanks again! I just need my thoughts/feelings on this to be more settled going into Christmas, I want to fully rest. Hope you have a great holiday - and everyone else here too.
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.
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.