Awaiting diagnosis. Any advice?

Clearest thing so far is working from home has allowed me to survive and do better than before. If my work does not let me do this once pandemic over I will have to leave and find somewhere that does. I can't handle any more the lights, noise, people. Masking and coping much more after all been through will break me in these areas.

To you as well

Private route was very good, efficient, competent people and incredibly thorough. Almost worryingly so.

Start to finish was two weeks for me. Clear diagnosis of ASD. Lead assessor said that informally it would be high functioning but that is no longer a part of diagnosis. I think more accurate is low support to be honest - I am very good at some things but useless at others and in general takes way more effort and planning to do anything that NT folk, which is the basic point I think. On outside I can seem v good at my job and a few other things but noone ever sees what it takes to do that. Just keep on keeping on I suppose  been doing it all my life and don't want to overthink it as it has just about been working so far so don't want to upset the apple cart. Marginal changes for marginal gains is what I am hoping for. This community has been good for me and I've only been on here for 1-2 weeks. Some very special people here.

Thanks for your response, consciousbadger. 

The private route is one I may consider if the waiting times are too long for me to stay sane. I don't really have much of an indication of timescale at the moment as the GP only sent the referral around 4 weeks ago.  If you don't mind me asking, how did you get on with the private route? I assume from your post that you have received your diagnosis.

I am unfortunately all too aware that there is no panacea. I'm not even convinced I would want something to remove it, which I understand may sound baffling, but rather just something to explain it and let me understand what's been going on inside for all these years and then have some adjustments put in place to help me live at least semi-normally.

Your point about resilience really hit home for me. I don't mean this in any way to garner attention, in fact being the centre of attention is basically my worst nightmare, but with everything I have had to endure ON TOP of ASD and to still be able to find joy, sometimes, even if only fleetingly, is the definition of resilience. I imagine this is something that a lot of us will feel.

I wish you all the best.

This is almost exactly where I was about six weeks ago. I could not wait for the nhs so I got a 0% card, did money transfer, and paid for a private assessment. Being in limbo for me for 2 years was not an option but we are all different. Similarly that financial behaviour is not advisable for many possibly everyone - luckily I know I can repay the amount within the deadline before I start to pay interest on it.

Try to stay positive, positive thinking is a thing even for autistic people. So try to catch uourself when you start saying things to uoueself like you're worried you will burnt out again and end up at square one. These things can be self fulfilling.

What I did while waiting for assessment was assume I have been diagnosed with asd and act accordingly - minimise stuff that causes me grief and maximise stuff that is good for me. What is good about that strategy is it helps you whatever the diagnosis is. At the end of it you will be told a yes or a no, that's it, so don't assume there will be some panacea. I'm atriad it is down to us to control out destiny as best as we can, but autistic people are resilient so hold on to that.

Thanks for your response, DiffidAnt. Sounds like we're in a similar situation.

My work have already been incredibly helpful with my circumstances and I don't see any reason why they wouldn't support further adaptations. I already work from home in this role but find myself burning out daily with the multitude of different tasks, being on MSTeams and being asked constant questions/constant criticism from certain colleagues and being asked to shift focus. I also have to answer the phone sometimes which is both anxiety inducing and distracting. I may ask if they would be willing to allow me to work on a single task and just make that my designated role. 

Thanks again for your advice.

Hi, my circumstances sound very similar to your; I'm also waiting for my diagnosis. The best thing I can say is to listen to autistic people, either in person or on the Internet (there are many interesting people on YouTube), to see if your experiences are similar.

Recently, I spoke to someone in person who I work with, because I sometimes have the feeling that I was 'making it all up'. However, they said that they felt something very similar, which I was amazed at, as I always thought that I was entirely on my own. I still do, but it was helpful.

The only other thing I'd say is that you don't necessarily have to wait for a diagnosis to get help. Recently, I asked for changes to my working practices without giving a medical reason- I just said they would be helpful. Maybe you could try that? For example, you talked about being sensitive to loud noises; when you negotiate to return to work, maybe you can ask to work in a different room because you think that would be more productive, or some other solution that means you don't have to talk about the wider stuff if you don't want to. The same could apply in your relationship with your partner.

Thanks for the reply, Catlover.

Yes, this is also a fear of mine. The "not autistic enough" label. It is in my head that they will think "well, he's managed this far without a diagnosis so why add another one to the pile of sick notes?". The truth of the matter is, I have never managed anything and I just burnout/meltdown all the time without a reason why. It's debilitating.

Sounds like you have had much more luck privately. It may be a route I need to look down depending on how long this is going to take.

I wish you, and your daughter, all the best moving forward.

I’m in a similar place,  however I’ve just had my first part of the assessment process, privately. I know that from what I explained, I was taken on. So that means the test isn’t being performed unnecessarily. But I still feel like I won’t be diagnosed, or I’m not ‘autistic enough’. I mean I’m 48, I’ve two children and I’ve been married. Yet, my whole life has been traumatic and difficult. Like you I’ve had recurrent depression, and was diagnosed with social anxiety when I was 40. I was signed of last year with a burnout. This year I’m in a better place but still recovering.
I also feel trapped. I also don’t want to change jobs or do other things in life until I know for sure. I’m pretty sure myself, but since I’ve gone so long without realising, I still think it can’t be Autistic.  And i need to see it to believe it.

My daughter didn’t get diagnosed on the nhs. They said she didn’t have it, I was worried I’d be treated the same, which is why I went private, as I no longer trust those people who didn’t diagnose her. My daughter just competed her assessment privately, and came out with three diagnoses.