Coping with diagnosis

Hi Andy,

I don't find that too surprising really - I didn't know either (I also didn't want that diagnosis, but it seems even people who were desperate to get it are often just as lost). So I didn't really cope and tried to punish myself for being the way I am, especially after telling my mum about it and it turned out she had been suffering from me all my life, and lots of other people too, apparently. Somehow I did quite a lot of rubbish, ended up in A&E and with some crisis team nurses and the like, non of which was helpful, they didn't understand me and neither of us felt that I should be there. Guess I was generally not in a great place, not just the diagnosis thing, but it's quite bad that they simply send people away without anyone helping you to deal with what  they've told you, whether this was what you wanted to hear or not.

Anyway, you need a fair bit of patience and I'm not sure if it's countrywide or only in some parts, but after some time you may be offered 5 sessions with some counsellor who specialises in autism, you could perhaps ask if that's going to happen, even if it takes a while. I was very skeptical first after a lot of bad experience with counsellors who made me feel worse every time but did give it a try and it was actually really good. I wasted the first session with being worked up about this counsellor saying she'll send a summary of that session to me and my GP (and I did not want anything to go to my GP because I was looking for a job) but after this was sorted it was really helpful. There is no set programme for those 5 sessions, so if you don't really know by then (which is likely, I guess) you can explore what to do with that diagnosis, for instance. Make the most of it if it is offered to you, it's likely to be the only time that you see a counsellor who does understand your issues and may therefore have some useful suggestions how to deal with them.

Otherwise, have a bit of a read around here. I find it's quite nice to know that I'm not the only "weirdo", somehow it seems a bit more acceptable that way.

Take care!

Oh yes. That makes sense to me. The older I get the less I seem to be able to cope , less stamina, less reserves etc and finding ways to build them up is harder too. Other people in general are tiring for me but sometimes they are the ones that can give us a boost. 

I do have meltdowns as it is, but I think I am generally burnt out which is why I'm not coping where as I used to be able to. If that makes any sense 

Neither of those easy to tolerate.. there is a post about background noise which I also have trouble with... I think the relaxing and not trying so hard thing is that you've just got to give yourself permission to do that and if necessary tell those you need to that that's what you'll be doing. Because if you don't give yourself some slack for even part of the time you will eventually possibly either have  a meltdown or burn out. I live on my own and not responsible for a spouse or child so realise that's a very different situation. 

Yep, and I just want to be able to relax and not have to try so damn hard all the time.

why also has my hearing gone even more damn sensitive to background news than it was before. The supermarket earlier with my daughter nattering away was torture 

Thanks. My time line is that I was assessed nine days ago, so everything is new and fresh as to protect myself I wouldn't asmit the diagnosis until it was formally confirmed.

My new wife I think is in a sort of denial stage and "this doesn't change you or anything" stage, which is frustrating as I want to be able to relax a bit and not have to try so damn hard all the time.

Handi-andis said:

Surprisingly enough, I don't know what to do with the diagnosis or what to think about it or how to cope with it. I know I'm not coping well with things in general and need help, but don't know what help or sort of help that I need or where to turn for it

Hi Andy, with regards to how to cope with the diagnosis, for me it was just an issue of time. I was upset the day I discovered I had autism, and it felt overwhelming whenever I thought about it for a good few months. I had to wait 18 months between my initial meeting and my formal assessment, and my feelings about autism got better slowly through that time. Even by the end of that 18 months I still felt anxious when I thought about it. Once I got my official diagnosis, I felt relieved and it's been much easier to accept since then - I was out of that horrible limbo of waiting. I don't know what your timeline is. I'm much more accepting of it now, so remember your feelings about it will change over time, you just need to get used to it.

Hopefully your new partner can help you cope with things - one of the perks of having someone close! My wife is very supportive and "gets" autism so I have it easy - she helps me with the things I struggle with. The place you got your diagnosis from should also be able to help you with some post-diagnosis support, so get in touch and see what they suggest. As well as this forum, you probably have local autism charities you can get in touch with, and your Council probably has something set up if you call the Adult Social Services department - say you've been diagnosed with autism and you want to find out what support is offered.

Hope this is of some practical use.

Thanks Kaz. I just read some of the posts that the system through up as being related and they are quite helpful. 

Thanks Ross. I ordered a paper copy before I put the post up, as I want my wife to be able to read it too, as it's difficult for me to articulate how I feel

Thank you for posting this.like you I've only just been diagnosed. If I find any info other then what Ross above has posted .I will let you know.

Thanks for this info.ive only really been diagnosed and was unsure what help was next

Hi Andy,

While you're waiting for people to respond, which hopefully they will, you might want to have a look at the 'What Next?' booklet on the NAS website, which you can find here - http://www.autism.org.uk/products/leaflets/what-next.aspx. It's written for people in your situation, adults who have just been diagnosed with ASD and has information and advice about where you can get support, among other things.

Hope this is of some use,

Ross - mod