What have you achieved from getting diagnosed?

:) excellent. I'm on an impromptu forum day today and is good to put questions out there- I'm learning things from other viewpoints too.  But I must make a move soon and get some stuff done. But yes, I'm glad it took a short time to diagnosis- I've heard that in some parts it can take a lot longer for the process. 

14 months isn’t too bad. I didn’t have to wait too long between being referred by my GP and being screened by my MH team. But only because I was already on the MH team waiting list for my OCD so they just combined the OCD screening (pre-CBT) and ASD screening into one appointment. After screening I had a 6 month wait for assessment/diagnosis. Because I also have a co-morbid ABI I was seen by the Maudsley (specialise in complex cases) and got all of my assessment and a verbal diagnosis done in one day. I was glad to get it over and done with but it was very overwhelming too!

It actually only occurred to me while writing my reply above that asking my husband to write important information down could be the way forward! I will suggest it to him. My reading comprehension and retention is a lot better than via The auditory route. 

It took 14 months from going to see my GP to diagnosis. 
Yes, thanks. I've felt like a bit of of a drag and a worry on the family over the years. Some of them will need more education than others. Siblings! tut!
I'm divorced and luckily like me, my ex wasn't a morning person. But in the past, in any relationship, it had its difficulties with communication. (Is that a strategy you'll suggest to your husband- to write things down?)
I also have reading comprehension issues and will need to get that sorted out.

Oh really? Why is that? How are you able to tolerate being on this forum with other autistic people?

Hi, Did your assessment process take a long time? I’m really pleased for you that you’ve found a way to improve and move forwards with your relationship with your family. 

Too much verbal information in one go is an absolute nightmare. My husband is the world’s worst for this, and he’ll do it at the absolute worst time too. When I’ve just woken up or when I’ve just got in the door from work, he’ll just start bombarding me with tons of information! I simply can’t handle it, let alone process it. I either zone out and switch off or switch my hearing aids off so I physically can’t hear him or go and shut myself away in my study. The frustrating thing is, if he just let me wake up or get in and settle in and then told me  one thing at a time then I might be able to take it in. Actually scrap that, I’m actually loads better with written information than verbal information, that way I can read it and process it at my own pace!

Kitsune said:

I spend a lot of time socialising with other autistic people which works well actually.

Really? 

I can't stand being with other autistic people

Hi,

I was diagnosed earlier this week after months of am I or aren't I waiting. Since the diagnosis I've made contact to join a social group to start with. The amazing thing to happen though, was today when I agreed with family there would be agreed phrases both ways for when I find it hard to take something in and understand, or likewise, when the family need me to stop and clarify or explain something. Because there has been uncertainty leading up to the diagnosis and I've led a fairly normal 50 odd years life, I now have confidence to build on a somewhat strained family relationship for many years.

Today, in a hospital appointment my mother even got to see what happens when too much verbal information is given out to me in one go and she saw me getting muddled with it- I had the chance to explain to her that was an example of situations I don't process very well. It's like since the diagnosis, we're all starting to take note of each other. I'm very pleased some new strategies are happening so quickly.

But apart from that, it's life as normal and I feel I want to keep it that way. 

<laughs maniacally>

Because the UK is NOT READY for no deal... we started too late, don't understand what we need to do, are not working 'joined up' etc. etc. etc. 

Trust me, I'm on the inside of the UK.GOV preparations and it's absolute chaos.

Why would it?    there's far too many big, powerful people involved to risk anything going disastrously wrong.    It's all fiddled and fixed anyway - our politics has become a poor pantomime for the consumption of the unthinking masses - just look at the way Cameron handled a leave vote after promising to immediately lead us out of Europe.    The rest has just been making noises for the plebs to suck up..

I can't avoid it - I'm working on a project to hopefully stop everything turning to *** in the even of a no-deal Brexit...

I haven't watched the news or read a newspaper for years, the news is depressing and as you said nothing I do will make a difference to any outcomes. Traffic news is much more relevant and current!

I'm finding ways to relax my mind - the best move has been to ignore all current news - I simply don't care any more - nothing I can do is going to make any difference to any outcomes so I'd rather not know or stress over it.     I've not seen ANY news since February - I hear Boris is doing something but I don't care.    I'm only interested in local traffic news if I have to go somewhere.  

Ignorance really is bliss. 

Yeah I have often thought that I may also have Alexithymia, I think it's very common in autistic people.

I up the housework levels if I'm stressed. The more stressed I am, the cleaner my house is!

You're right, we build walls around ourselves to protect us from a hostile environment that our brains struggle to comprehend.

I also view anger as useful. If I have to feel then I would rather feel anger as opposed to sadness as anger makes me get productive and yeah as you said, it's a fuel to get me through difficult experiences.

I can't help but wonder the damage that this does to us?

This is all so familiar...

The whole not feeling/not recognising emotions sounds like Alexithymia - it seems a common co-morbidity but I never thought it applied to me until now.

For me, I start to up the exercise levels as the un-dealt with emotions build up. I once said to my psychologist that the cruellest thing someone could do to me was to make me feel...

We don't just wear masks, we have thick armour that's really a survival suit even though it leaves us isolated and numbed.

For years about the only emotion I felt was anger as it seemed 'useful' as a defence mechanism and also 'fuel' to get me through tough experiences.

I think sometimes I am aware that I am experiencing emotional pain but just try to ignore it and carry on regardless OR a large percentage of the time I don’t feel anything in response to situations or experiences that I ‘should’ feel something about. Quite simply I do not receive emotional data about situations even though logic tells me that I should. I have learned however, that just because I don’t receive the emotional data to tell me that an experience is affecting me, this doesn’t mean that it doesn’t affect me and that effort can be shown months later by changes in behaviour such as starting drinking heavily most nights a week and starting smoking again. Now that I realise that, I’m better at pre-empting disfunctional behavioural responses and stopping them before they start. I still don’t know how to deal with the initial experiences though. The ones that logically I should feel a response to yet I feel nothing. Yet I know that they probably have had an effect on me on some level.

I was talking about this with an autistic friend of mine the other day and she gets the same thing. I imagine that I probably have underlying multiple amounts of PTSD from a large variety of incidents over the years. Stuff that I probably need to deal with at some point! 

I also do not perceive that I have a choice to cope or not! Not coping isn’t an option!

I don’t like feelings! Maybe that’s part of my problem! I got burnt so I learned to build a very thick shell! One that will not be taken away from me without a struggle! I can be an absolute ice queen when I have to be and I prefer it that way!

Yeah... except I think that although we 'expose' ourselves to emotional pain we don't allow ourselves to 'feel' it...

Because we feel things too much...

So we protect ourselves by not allowing ourselves to feel at all...

And get a reputation for being 'strong', which ends up being a trap because we can't let people down.

Someone once said to my brother (undiagnosed, but quite possibly also ASD) "I don't know how you cope with everything", his response? "I didn't realise I had a choice..."

He ended up getting treated for PTSD due to what he'd been 'coping' with...

Human beings need to feel, autistics need to learn to how to feel in a way that doesn't destroy us - feelings are like flames, you need to be able to get close enough to feel the heat but without getting burned...

Or when you’re following the diversion signs and suddenly they stop without warning! At which point I’m usually convinced that a mischievous person has moved them on purpose to confuse unsuspecting drivers! This actually happened to me once and I ended up miles from my intended route and had to try to navigate my way back! That’s a little bit how I feel post diagnosis, I’ve gone off down a different route to the one that I expected to be on.

I started my own group for autistic women in my local area following my diagnosis at the end of last year and it’s going well. I also go to the social group of the autism group in the next town up. So I have a network of other autistic people that I meet up with quite regularly. I’ve chatted with a few other autistic friends since I started this thread and I’m feeling a bit more ‘on track’ now than I was. 

Yeah we’re too far down the route of trying to live as ‘normal’ a life as possible to be able to start from scratch and make all life decisions from the perspective of being autistic. We still need to work, our children still need looking after. Life carries on regardless. It’s more a case of adapting how we do certain things, to allow us to take care of ourselves better, but within certain limits. I had believed that there was something ‘wrong’ with me since I was 17. At least now I know that I’m not ‘wrong’ just different.

What you say about acceptance and commitment therapy is intriguing! I’m also a coper, I pride myself on being mentally strong. Anyone that knows me well tells me I’m so strong and I do so well to cope with so much. BUT is it healthy to plough through every emotionally challenging situation like a bionic woman? Is is healthy to expose myself to emotional pain with the mind set that it doesn’t matter as I’ve been through worse so I can get through it? I would imagine that I too have a box full of demons that have never been acknowledged or dealt with and I worry that they might escape at some point in the future!

I hope that you manage to realise all of your strengths  sometimes it’s comforting to know why I don’t fit it. Yesterday at work, I thought of my colleagues, you probably don’t ‘get’ me because I don’t really do facial expressions, reciprocal eye contact and I take everything far too literally. But that’s ok. I don’t expect them to understand me. Because I know that my brain works differently to theirs. It’s good to understand ‘why’. Try socialising with other autistics. It works fabulously well!

As has been mentioned further up the thread it's the 'now what?' feeling... like when you're driving and you get sent into a diversion and there are signs all along the way then you get 'Diversion ends' but you're not back on the road you were on before you got diverted...

It's left to informal groups to form and support each other plus people like Agony Autie to share their experiences.

I feel like late-diagnosed autistic adults need more support than early-diagnosed kids in a way. We've got so many more pressures on us - work, family, lack of work, isolation, substance abuse... plus we've got the mask and the self-knowledge of being 'wrong' (I use that word deliberately to reflect how I think most of us feel pre-diagnosis)...

My psychologist has mentioned Acceptance & Commitment Therapy which has a basis in suggesting the underlying issue in many cases is 'experiential avoidance':

"attempts to avoid thoughts, feelings, memories, physical sensations, and other internal experiences—even when doing so creates harm in the long-run."

That has been a mind-blower for me... I always thought I was good at coping with stuff 'cos I didn't get upset when all around me were crumbling - turns out I'm terrible at it, I've just got a box full of demons that's bulging at the seems and every time I try and stuff a new one in it there's a real risk that some/all the others with make a bid for freedom, which means I can get overwhelmed...

The referral that your Doctor made should still be on record/in the system regardless of whether you are now registered with the same or a different GP. Have you considered finding out what happened with it? Having a diagnosis might come in useful in the future, not just for job interviews. 

Before I asked my GP to refer me I made a list of all the historical ‘evidence’ that pointed to me having ASD. I also asked a couple of friends who work with autistic children, for their opinion. This gave me something to refer to when I actually saw the doctor. 

It’s good that you’re able to ‘brush off’ the interviews that haven’t gone to plan but I would imagine that it’s still not a very pleasant experience to have to go through? Especially if you are competent enough for the job! 

Unfortunately interview performance counts for a lot when it comes to getting a job or not, regardless of whether or not s person is diagnosed with autism. Have you tried ‘eye contact modulation’ techniques, just to use in an interview? I use these when I am at work so as to avoid doing my usual extreme eye contact thing of either completely avoiding eye contact or conversely accidentally staring people out!