The genie is out of the bottle...

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...

Parents
  • The rewiring was something I hadn't expected too!  I'm on the waiting list for an assessment/diagnosis but I've been reading as much as I can (again) about the condition but (this time) with different eyes.

    Like you, I didn't do anything about it the first time round back in 2008 but it got to the point where I couldn't continue and desperately needed to do something about it.  I have been lucky that there has been a real-life forum where I've been able to talk with others on the spectrum about their experiences and challenges - and that has been the turning point.

    After acceptance of the condition I began to understand the way that the autistic mind is different to "the mainstream" but, also, how wonderful it is to communicate with others on the same wavelength.  It's only now that I'm breaking through the NT programming that my mind has been subjected to since a child and embracing how I really feel, and react, and how my brain really works.  And, I think, that's why we think we're much younger inside - we're relearning how to be (if that's the best way of putting it?)

    I'm also making notes in preparation for the upcoming assessment and every day or so I get one of those "A-Ha!" moments and suddenly have a flashback to when I was a child.  That is also another reason why I sometimes feel like a child trapped in an adult body.

    It sounds like a pretty common feeling and (as suggested) don't push it and just allow it to happen.  And, yes, it is hard to open up areas of yourself but it does get easier - I've actually been going through the same sort of thing for the last 2-3 weeks, sometimes good, other times not so good - but each time it gives me the chance to adapt or look for coping mechanisms if they're needed.

Reply
  • The rewiring was something I hadn't expected too!  I'm on the waiting list for an assessment/diagnosis but I've been reading as much as I can (again) about the condition but (this time) with different eyes.

    Like you, I didn't do anything about it the first time round back in 2008 but it got to the point where I couldn't continue and desperately needed to do something about it.  I have been lucky that there has been a real-life forum where I've been able to talk with others on the spectrum about their experiences and challenges - and that has been the turning point.

    After acceptance of the condition I began to understand the way that the autistic mind is different to "the mainstream" but, also, how wonderful it is to communicate with others on the same wavelength.  It's only now that I'm breaking through the NT programming that my mind has been subjected to since a child and embracing how I really feel, and react, and how my brain really works.  And, I think, that's why we think we're much younger inside - we're relearning how to be (if that's the best way of putting it?)

    I'm also making notes in preparation for the upcoming assessment and every day or so I get one of those "A-Ha!" moments and suddenly have a flashback to when I was a child.  That is also another reason why I sometimes feel like a child trapped in an adult body.

    It sounds like a pretty common feeling and (as suggested) don't push it and just allow it to happen.  And, yes, it is hard to open up areas of yourself but it does get easier - I've actually been going through the same sort of thing for the last 2-3 weeks, sometimes good, other times not so good - but each time it gives me the chance to adapt or look for coping mechanisms if they're needed.

Children