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!
I’ve tried growing a thicker skin in more recent times. In a lot of ways I’ve had to. It’s maybe one micron thicker. So I don’t think I’m cut out for being Teflon.
Unfortunately Touay, Wokism seem to have penetrated into our government which is quite serious and I believe needs to be voted out at polling stations. Hopefully those voted for will have the backbone and guts to SACK those civil servants who still carry the EU baggage with wokism. This diverges. Returning to Shardovan's point it is difficult when a close relation expresses a "commonality" trend with autism. She has my sympathy. and should Try her best not to allow this annoyance to drive a wedge between herself and her sister.
Well said! And likewise…
im glad I didn’t delete the thread, though I may still delete some of my original post as there’s enough additional momentum to allow it… possibly.
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’
I think in my situation as self-diagnoused the syndrome has more power over me maybe?
Yes forgot about ME sufferers not being believed. I have also been diagnosed with Functional Neurological Disorder. Apparently some think it is just psychological. It can be but there are still unknowns.
I suggest wokism doesn't make sense unless you realise that what the wokists claim to support is the opposite of their actions. They clam to oppose racism, but proudly condemn people for being white or racially abuse non-whites who state opinions opposite wokist positions. They claim to support women but support men victimizing women by competing in womens sports. They support 'the vulnerable', but actively defend the sexual grooming of children and children stripping in gay bars...Wokism is about POWER - they will say and do ANYTHING that gives them any form of power over others.
My tuppense worth as an old geezer is, I have often said "this is not my world"! I can't get my head around this inlusive woke thing. It makes no sense to me. I'm not sure if this a result of my autism as I view my reality literally and practically and wokism just does not fit into my reality. I blame those who think ND is "trendy"on this inclusive movement nonsense. I find that point very demeaning to people who have been diagnosed with ASD --- as I have. We all are considered equal by our creator, but humanity has distorted this "equality" within its respective social norms. Until some sort of drastic social reset happens these fringe attempts eg wokism etc. will remain bothersome to many. Until that happens this will remain "not my world"
Returning to Shardovan's point, irrespective of family, friends, or acquaintances, we as a group must tolerate social trends and their opinionations with a thicker skin and a laugh.
I totally understand what you're saying and I think maybe your sister, though meaning well, doesn't entirely realise the impact of comments and memes like this, so it's good that you're telling her it upsets you so hopefully she can learn.
I think of it like this, if our autism is so commonplace, why do we find it so difficult to access the services and support we need? If autism is truly commonplace then the general population and services would be more clued up in providing what we need and reasonable adjustments would be easier to put in place etc.
I think as more people are rightfully diagnosed, our voices will get louder until things start changing for the better and our lives may then become easier. At the moment many NT people think that autistic people can just 'get on with it' and 'stop making a fuss', I personally am having to educate alot of idiots in housing and medicine at the moment and althpugh draining, I won't be told my difficulties are insignificant.
We got to midlife struggling and not knowing so we bl**dy well deserve and demand to be treated well now.
Take care
Sadly this all sounds very familiar when talking to my family members. I’ve come to the conclusion that I’m just not going to discuss it with them anymore, precisely because it upsets me to have them through doubt on the validation of having a diagnosis. Makes me sad that it’s come to that, because I know they love me, but I don’t need their doubt and gaslighting in my life.
Thank you for reading and leaving your opinion here
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.
I need to be believed, by myself most importantly.
I think you are VERY wise with this statement.
I do believe myself and I also doubt it, but I think this what the syndrome is about.
I think you are knocking on the door of prophetic with this statement.
Here Here.
A real imposter never feels like an imposter, I like reading this. I struggle a lot with the imposter syndrome and I'm seeking an official ASD diagnosis that I can barely afford because I need to be believed, by myself most importantly. It sounds weird that I do believe myself and I also doubt it, but I think this what the syndrome is about. It stopped me from therapy itself because I was so scared that the therapist wouldn't believe me. I wonder everyday about my identity and my whole reality and it's such an exhausting place to be in.
Real imposters never feel like they are imposters.
You are a very valued member of this forum. We all each have our own flavour of being autistic. I have felt too exactly as you have described here. You have found yourself in this place because you KNOW who you are. An ""NT with too much time on their hands" would be found out pretty quickly and wouldn't have stayed as long as you have. Your writings have both helped me and given me entertainment.
I have "super power" when it comes to writing since I was a child. I think sitting with a paper and not worrying about how weird things might sound like to anyone, since the paper wouldn't possibly judge me, changes everything.
It's also about the level of sensitivity and the intensity of the feelings I guess. Something that said words can't describe. I don't usually have enough time to find the words that accurately describe how intensely I feel things or satisfies my need to accurately describe the feeling itself. The paper gives me all the time I need and allows me to read, reread and edit or correct until satisfaction. A human wouldn't wait more than a minute before they stop listening and will so quickly be confused with how confused and slow I am while talking. I go back home to have the conversation few times again in my head until it's perfect but then there's only the paper there to listen. Sounds stupid that papers can't possibly listen hehe but they do a better job than humans when it comes to that.
Maybe after years of having such dependency on writing, I have this special feeling that I can't possibly describe whenever I grab the pen and stare at the empty paper to write. I know that I can write what's impossible for me to say.
I described my experience hoping that it would explain a bit yours or that you could relate. I do like reading your writings, and I believe that the beauty of what's written isn't only about the sensitivity of the writer or their care about the written text but it's also connected to how aware they are of the small details of the world inside and outside them, and to how much mental energy they have while writing. for me it's also about the time of the month and body hormones too!.
Thanks Ree (and everyone), I know I’m absolutely believed here (that wasn’t ever a concern, more then broader reality or otherwise of ‘everyone’…) though I do begin to wonder sometimes if I come across here as less self-evidently autistic than others. Something in my writing style maybe. It’s not masking here as such, just that I don’t think I have as many ‘tells’ in how I write (or in many outward things actually) and I’d hate to think that even here that might make me seem like an NT with too much time on my hands and not someone who truly needs the support of his neurokin so to speak. But then I can think of quite a few people here who write similarly to me, writing that would pass for largely or entirely conventional structuring of writings.
That’s a good point. And I can remember in the late 80s and early 90s ME/CFS sufferers getting a hard time and lots of assumptions that ‘everyone’ was claiming that for themselves to be lazy. Very humiliating times then for anyone living with that.
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.
You have articulated very well what I didn't have the spoons for to say yesterday. Struggles are invisible - we know our own truth.