Just trying to figure myself out

I discovered quite a bit about my early years during my assessment (they interviewed my Mum by post). It turned out that I had quite a few early signs (though I had them far too early historically for my autism to be recognised as such). I found out that my reading was in advance of my verbal development was I was little, and that I've done most of my crawling as an adult (when I was a caver), as I never crawled as an infant. I can also see now how there's a thread of autism running through our family, so my traits were never looked down upon by my family, as they'de all been seen before in previous generations, such as when my Mum used to babysit her younger brother, who is very much the "me" of their generation.

I found Neurotribes a fascinating read, though be warned it is rather horrifying to learn just how badly autistic people have been treated over the course of history, and it's quite a long book. It totally puts into perspective where so many of the misconceptions and controversies that we're still dealing with have originated. And the compassion and respect of the author, Steve Silberman, for autistic people and their families shines through on every page.

Thanks, it does make me wonder what else could be hidden on the bits of my record that I can't see.

That book sounded really interesting, so I just went and found it on Google books and read most of the free sample. I'm going to have to get the rest of it now!

It means that you discovered something about your past which is very common. Even these days, and much more so before autism was better known, the failure to respond to sounds, especially the calling of one's name, is often one of the first infant autistic traits which gets noticed; and it's often first assumed to be a hearing problem. In fact, I'm just re-reading the book "Neurotribes" about the history of autism, and it's a recurring theme in the book, going as far back as the first suspicions that there were a bunch of traits which might be an unrecognised condition.

Just found something interesting, but didn't feel like it warranted it's own thread so I'll just post it in here as a kind of update, whether people see it or not.

I recently changed doctors, due to moving home, and have just got access to the app that allows booking appointments but also shows a partial medical history. 

There is a note on my file for "hearing difficulty" added when I was about 1 year old. Clearly I don't remember this, so I asked my mum and she said that during a home visit the health visitor was unable to give me a pass on a hearing test because I wasn't responding to sounds properly. They had to take me to a follow up test at a nearby general hospital where it was eventually determined that my hearing was fine but I was just ignoring the nurses who were making sounds to try and get a normal reaction from me.

I'm not sure if this means anything, but I thought it was interesting. This was in the 80s, by the way so testing was probably less sophisticated back then (I assume).

Haha, me too! I tend to wander around the shop a few times looking suspicious before I decide what I'm going to actually buy. :P

I'd choose not to have to choose every time! I'm the same if my usual brand of something is out of stock at the supermarket - I just end up frozen there with an empty head, getting in everone's way (I've been mistaken for a shop-lifter several times).

Oh I'm terrible at deciding what to eat. It's become a running joke that whenever we are out for a family meal everybody is always waiting for me before we order... and even then usually just have the same thing as normal.

It seems to be quite common; like our brains are no good at prioritising the messages from other parts of the body. If I get really engrossed in something, the phrase "coming to your senses" can be very literal - I'll snap out of it and find that I might be starving hungry or thirsty, freezing cold, have a dead leg, or my bladder is about to burst. I don't really feel as if my mind inhabits a lump of flesh and blood at all sometimes.

It's very rare that I eat breakfast (I always feel as if my insides are still asleep). Yet at my last job, I could get so into the rhythms of the machine I was operating that my supervisor would have to remind to go for lunch - I'd just merrily carry on until it was too late to bother having a lunch break at all, otherwise. It doesn't help that I can never decide what I want to eat - quite often exactly the same few things for months on end so that I don't have to decide. Give me a complex programming problem, and I'm fine - but I grind to a halt trying to decide anything that doesn't have a definite answer.

Thanks, you have raised some good points there. :)

It's funny you should mention forgetting to eat because it's reminded me that when I lived alone I very rarely ate breakfast or dinner/tea. It's like I only remember to eat when other people are eating.

Welcome, AJ!

Sorry I'm fashionably late for the party - I'm catching up after a bit of a break, and I have a bit of a scattergun way of going through new posts.

Firstly - don't worry about "writing essays" - they've always put up with me around here, and I sometimes couldn't keep a post short if my life depended on it (long ones are quicker to write, as I can't edit down without procrastinating - literally for hours sometimes!) Besides which, autism often affects how we use language, so it's only fair that we're tolerant. In fact, what you say about picking up your alphabet really young can sometimes be an autistic trait (hyperlexia), and I was that way myself - reading and writing came to me easier than spoken communication when I was little, and I can't notice anything with writing on it without feeling compelled to read it. Autism is often like that - at the extremes of things in either direction (for example; dyslexia is more common, just as hyperlexia is; as are the opposite poles of maths ability).

There's a lot else there that I recognise too; a previous history of struggles with mental health that no-one could quite pin an exact cause on seems almost de-riguer for a late-diagnosed autistic person. Unfinished projects and getting derailed easily - oh yes, I sure recognise those; they've been the bane of my (failed attempts at a) career many times. I'm usually either so hyper-focused on this one thing that I really have to do right now that I forget to eat and wouldn't notice the apocalypse happening, or I'm so scatterbrained that making a cup of tea takes a dozen attempts over the course of a couple of hours!

As for tying up NHS resources; the way I see it is this: Autistic people can often be easily overwhelmed by things which don't much bother other people, which leads to what's sometimes called "autistic burn-out"; which is often mistaken for mental health problems, and sometimes really does lead to mental health problems. Understanding ourselves is key to dealing with this better and making burn-outs less likely. So in the long-run, we're just as likely to need help from the NHS if we don't get the explanations that we really need - maybe even more so - and often the kind of intensive "crisis" kind of help that costs the NHS the most. So think of it as "preventive medicine".

Best wishes.

I didn't expect to be helping anybody when I posted, so I'm glad I could.

Thanks for your comments too, I really appreciate it.

Thanks for the reply, I've actually just moved house so I still need to register properly at a new doctors, so I should probably get that sorted first. I just found out that I can request to see my medical history too, so when I've finished registering I'll have to have a look and see if anything I don't know about is hiding on my record, just in case.

Wow, just wow. 

You write so well and expressed so many things that I could identify with (and clearly others here can too.) Self-knowledge and self-awareness seem to be the golden key to self-mastery and finding ease within ourselves. I would guess that most of us have spent a lot of time and energy throughout our lives, looking for these insights as we recognised our differences from the majority of people. I certainly have. And it’s exhausting!

Thanks for your offering. It feels like a gift.

Hi AJ

It’s great that you’ve joined the forum. I feel really at home here. It’s the only place I feel I can speak freely and where I know people will listen, share and support.

I thought the way you describe your work experience really eloquent. I can relate to so much of what you’ve said (distractions, mind going blank, not finishing projects, needing to have a plan, the whole lot).

I’m also not great with friendships and also ‘leave the heavy lifting’ to others in conversations. With maths, my mental arithmetic is also poor (that’s why I fell in love with Excel), however I do like the patterns in maths regardless of the struggles I have with it. I was also way better at English too.

When it comes to approaching your GP, if you choose to do so, the NHS is currently promoting access to mental health support and services so there is a good chance your issues will be received sympathetically.

GPs are just the gateway to the assessment service so it’s worthwhile going through the gate to access the people who actually have the specialist skills to diagnose.

There is usually quite a wait for assessments so you’ll have plenty of time to think about things while on the waiting list. Time for more research and to pose questions to the NAS forums to help prepare for your assessment.

Anyway, thanks for posting. I like to hear about other people’s experiences - they help me understand my own traits better as well as validating my own experiences. The affinity I feel with everyone else on here is so reassuring.

I have been rubbish with maths, and spelling for 50 years but have bluffed my way round it. Plenty of 'normal' people are crap at their job too.   Plus those skills are not so massivley important now as they seemed at school in the 80's. I have had published two minor local history books that I had a very good proof reader for. Perhaps as a part of masking I can lie for England about any of my incompitence at work and I have never been sacked. 

Yeah, if I did end up with a diagnosis I don't think I'd tell many people, but I like to think that it'd give me peace of mind and the knowledge that I'm awkward for a reason not because I'm some broken.

haha, same! my whole life. I even saw someone I knew on a train and I spent the whole journey pretending I hadn't seen them ...and the spiral of awkwardness just goes on...

At work they sometimes organise an evening out on the same day whereas I would like a few days' notice (but even if they do, several other "planets" need to be in line, such as not interfering with my jogging schedule and not being too tired). I think they are exasperated with my excuses, but for me, they are not excuses, they are genuinely huge boulders in my way.  

I have also made this mistake many times of befriending someone and being convinced that they are my no.1 friend and I am their no.1 friend - simple  - but eventually the realisation hits me that I am probably their no.51 friend and completely dispensable.

Wow that is like reading about myself. Yes I like meeting new people but am rubbish at maintaining relationships. I am very bad at maths which I'm ashamed about but am great with words. I have a first class honours degree in Literature. I've also got distinctions for creative writing.

But I suffer badly from anxiety and low self esteem. I work as a cleaner and barely get by. I was given a diagnosis of Asperger's a couple of years ago at 54 years old but I haven't told many peopleThey don't believe it and make me doubt it.

I know what you mean about the meeting people bit. It's kind of weird with me, because I do like meeting new people, but I'm also pretty introverted so although I want to get to know people I generally don't make the effort to do the actual making friends part.

I still find it impossible to maintain friendships though, so the only friends I really have are the people I work with and therefore see on a daily basis, but whenever there is an activity outside of work I always find an excuse not to go (and then regret not going, and then next time I still don't go).

I've lost a lot of friends through not maintaining contact with them, even though years later I sometimes still think about them and wonder what they are up to... and then I do nothing to get in touch!

It's good to know I'm not alone. I don't really know why I drop projects, but I do often pick them up again eventually.

I don't think it's a confidence thing for me, more like I find something else that steals my interest away from it.