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!
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.
Thank you so much for those really insightful words Joe. I can massively relate to the work thing in particular. I think there may have been some confusion among others in my office when I chose to disclose my diagnosis in a ludicrously overwritten (it is me after all) email detailing every nuance of why I enter it to be known and why that simultaneously required nothing from them (no specific action)other than understanding. Well, I say no action but in a way it was about strongly signalling what they should NOT do any more: when a post comes up that would have ‘clinically significant impact’ (must remember that one!) I no longer have it shoved under my nose with a ‘would you not think of…?’ - which used to fill me with dread I can’t even articulate. I know what I need and it’s what I have. To NTs it looks like stagnancy (unhealthy) but I have made it clear that it is scaffolding (healthy) because of who I am and what I need. And even if I was NT, I’d still reserve the right to choose continuity not radical change. Dorry, went off on one there! But maybe you can sense some of the internal pressure that came off me when I wrote that email. I did it more for me than them. Real or imagined, I was under a huge amount of pressure about all the ‘should’s I was maybe thought to be ignoring. The truth of course is that everyone’s in their own heads to much to be really doing that to you on purpose. But sometimes a fleeting comment from someone would (still does on occasion though I’ve reduced the regularity via my disclosure) that was a ten second curiosity to then became a week of anguished postmorteming for me. Enough was enough. I have taken control in a way of never have had the nerve to without the external validation of ‘diagnosis’. So when Ree says she really needs that too, despite being certain on the inside, I understand 100%. Not all of us have the strength to self-diagnose with confidence. Or even when we do, the second layer of being met with a raised eyebrow and a ‘says who?’ Is not one we can navigate without the armour of clinical diagnosis and ‘the receipts’