Apology in advance for undoubted long and rambling nature of this post, but writing it down helps get it straight in my head. Or out of my head. And in the time I’ve been on this forum I’ve found it really useful reading other people’s thoughts/views/issues etc, so I thought it was time I shared mine.
Background - female, 40s, diagnosed 2 months ago. Fairly straightforward and successful path through school, uni, job - been teaching in the same school for 20 odd years. Always knew I was a bit of a geek/oddball/quirky/insert adjective of choice, never really dwelt on it much. Did some training on autism maybe about 8 years ago and thought for a minute "ooh blimey, that sounds familiar" but then got on with life again.
I have quite a few sensory issues that have been around for a while, but relatively minor. About a year ago (last August) I had a bad allergic reaction to something unknown which caused a rash, itching etc. Also then set off every other sensory thing - very sensitive hearing in particular. Alsol set off ticcing and twitching, which again I've known I've had for a few years, but it's never bothered me. Had blood tests etc for the allergy, but nothing found. Sensitive hearing got worse, so went down the ENT referral route for that, which eventually (about 4 months ago) led to a diagnosis of pulsatile tinnitus and hyperacusis (where the brain processes sound as pain).
Realised in around October I was struggling at work, well struggling full stop really. Couldn't put it into words though. Looking back, it took me about a month or so to realise I was struggling, rather than just having "an off day". Was doing a lot of "Dr Googling" about all the sensory issues, and came to the conclusion that the common underlying theme could well be autistic spectrum. Did some looking into it, online tests, blogs, books etc (Cynthia Kim "Nerdy Shy" particularly resonated). All tests I did had me comfortably in the Aspie range.
My boss at work has been great, and again looking back I think he realised I was struggling well before I did. Eventually went and had a long chat with him, which was hard as I am rubbish about talking about myself, but he was really caring. And immediately put some practical things into place regarding noisy meeting venues etc. During that first chat, he used the phrase "oh I can tell you're really anxious" or something like that. Which immediately was like a red rag to a bull, and inside I was bristling, "I'm not anxious, why the .… are you saying that", etc. But didn't say anything coz I am very polite!
So about a week late it suddenly hit me like a sledgehammer that he was absolutely right, and not only do I get very anxious, I also get extremely paranoid. But I had never ever realised that! Or even thought it. Yet I would say that as an experienced teacher I could recognise anxiety in others....So that was a bit of a revelation, which led me down the alexithymia route as well as further down the autism one.
Had several more chats with him over the next few months (had also confided in 2 long standing friends as well by this point, one of whom works in SEN and has a son with autistic traits. Both said “oh I had never thought that about you..”, but both were understanding). During one of these chats my boss must have asked me something about how I was struggling, and I remember saying “the thing I’m struggling with most is the fact that I am struggling”. See prior to all this I’ve always kinda existed on a fairly even keel, and if asked to describe myself would have used words like “logical”, “calm” ,”rational”, and above all, “self contained”.
So time went on like this, then decided I had better seek diagnosis as I was kinda getting obsessed with the whole “am I autistic?” thing. So, got diagnosed with Asperger’s in July. Happy I did, validated my thoughts etc.
Now here’s the thing, and the link to the somewhat odd thread title…
Having the bolt from the blue moment where I realised I had previously been existing emotionally in what was probably a very narrow/sheltered/restricted/controlled way, I now most definitely am not. And the genie is most definitely out of the bottle, and it sure ain’t going back in, coz the bottle is well and truly smashed! But because I never knew I was living in that way, I’m finding this new existence all a bit fast/loud/shiny/bright and the world just appears to be carrying me along hanging in its wake. I guess it’s a bit like if you buy a new car, then and only then do you suddenly realise how many of that model of car there are...because I never knew I was existing like that before, it never occurred to me that there was any other way. But now I know there is, and it’s all a bit new and I’m finding it hard to adjust. I think emotionally I’m probably more akin to a 14 year old boy than an intelligent middle aged woman!
So I'm at the point now where I think my brain is having to re-wire itself, and whist I think ultimately that will be a good thing, it's kinda a hard process...
I see where you're coming from - I'm 52 but inside I'm only 16.
I never grew up. All of my peers are sooooo OLD! It's one of the reasons I ended up getting diagnosed at 42 - everyone around me was becomming more sophisticated and mature but I was aware that I wasn't - I was emotionally stuck as a teenager.
I am painfully aware that they are all old and 'serious' and the older we all get, the further I am departing from the acceptable / traditional norm.
I don't see a problem with this. There's nothing wrong with buying Lego and going to Disney parks.
I do have a nice collection of action figures... Mr Tickle and Bagpuss rub shoulders with the Terminator!
A formidable team... how about Professor Yaffle Windy Miller, and....He-Man?
Brains, brawn and attitude...
You could play this form of top trumps for ages!
are you ok though?
Yeah, thanks. Just not used to the feelings of everything being all over the place rather than being in control.
I raise you La-La teletubby, Buffy, and a Maltese fertility statue....
Yes, the not feeling in control thing is scary, potentially unnervering and can make you feel hyper vulnerable and uncentred.
that is why you need...
General Greenback, Jamie (plus his magic torch) and the littlest Hobo (plus the Red Hand Gang on standby)
Ask yourself “What would Mr Benn do?”
Sadly I do not possess a knight costume...
My next shelf contains... Darth Maul, K-9 and Sami Hyppia (footballer)
It could do with Yoda, Tom Baker and Shep
It does have Tom Baker emerging from the Tardis!
Then Tom Baker is as good a wing man as any. I’m booking my referral appointment tomorrow. But, like you, the epiphanies kept coming..l with a greater sense of self acceptance I found some of the masks relax a little
yeah, I'm hoping I'm heading in that direction...so rather than saying "I'm struggling with the fact I'm struggling". at least I know why I am struggling!
Celebrate each little success and remember this is YOUR journey