Long wait for diagnosis, feeling a bit lost

Thanks for your insight. I also struggle with noisy environments (in fact noises in general - I didn't go to the cinema for around 10 years) and am easily distracted. I managed to get a pair of Bose noise cancelling headphones, which have been essential, since I work in an open plan office. I'm not sure how I managed before, as I cannot block out conversations, background noises and people chewing / slurping their tea. I have contacted the university disability service but said they can not offer me any support until I have proof of an official diagnosis. Maybe I will try again, as I think I will be lucky if I am diagnosed before the end of this year.

Thanks for your kind encouragement. 

It certainly seems like we are sharing a lot in common at this stage. I also felt as if my work was suffering, and I was make silly and embarrassing mistakes which were setting me back. I decided to take a step back from lab experiments and concentrate on desk work (e.g. literature review) while I got myself straightened out. I also spoke to my supervisor to let him know what was going on and that I was waiting for an assessment. He was understanding and said 'I'm not going to treat you any differently' (which he meant in a nice way). I too wondered if I had jumped the gun a bit, as in the past I have disclosed personal things very quickly and subsequently regretted it. Impulsivity is a bit of a problem for me. Overall I think it is better I said something, although as it was too soon I fear that I may have underestimated the support I need and therefore I may not have made it clear enough to him the things I've been struggling and need support with. Overall I think it will be okay, (in your case too, I'm sure), we just need to look after ourselves and not become overwhelmed. But I knew a PhD would be challenging - I wouldn't expect it to be any other way, which I hope will bring a great sense of reward. When I finish I hope to look for something less stressful. Good luck with your studies!

Hi James, I'm in a similar situation as you. I'm not sure what is the best advise as I am also facing the same difficulties. But I thought to reply as it's nice to know that I am not alone. Wish you all the best.

You are doing so well James, incredibly well in fact. You are exquisite in your processing skills and what you are experiencing now, is a taste of what’s to come. 

It doesn’t matter what area of work you’re in, what matters is your mindset and you are priming yours very well. 

You have to mourn and processes your childhood and your past life, before you can step fully into your new life. 

In my experience it is both comforting and shocking, to realise you’re autistic and your journey to acceptance will be up and down. 

You can approach your university now, for extra support. In fact this is crucial. And don’t think you can’t take time out, if you feel you need it. Listen to your body. 

Allow yourself to feel the pain and sorrow for the little you. This is your opportunity to make peace with the past, but you also have to go through the emotions and give right consideration and periods of mourning to all the loss’s that you will encounter. 

You can contact the assessment team and ask for more information regarding the procedure and where the assessment will be held, ask what can you expect, will there be any after care. Maybe take some time to write a list of all the questions you have. You can also ask your university for assistance with this process and you are also entitled to advocacy support. Just make sure you get some support from somewhere. 

There are practical things that you can also consider, such as noise cancelling headphones, sensory therapies and things like that. 

Don’t downgrade your desires, in fact, make them bigger. But first of all, get some support now to help you through this process, which can get bumpy. But please know, that with the right support, you will achieve whatever you want to achieve, but it’s a process, made up of one small step after another. 

Oh, and if you can get your parents to go with you to your assessment, it will make the diagnosis more robust, but if you can’t you can’t. My mother didn’t end up going with me but I still got the diagnosis. On reflection though, I would of liked her to be there but she did tell me some things after I got the diagnosis which she had never told me before and that kind of sealed the deal for me, but I would have liked her to be there. 

Hi James, 

I don't have an answer to your question about working in academia but wished to welcome you and say that this is a very supportive forum. Every now and again other people working in academia drop into the forum to chat, so you're certainly not alone.  This has also been backed up by a couple of friends who work/ have worked in academia; one of whom says autistics are very common and my other friend is a retired professor with an ASC diagnosis. 

Regarding shared /open plan offices and noise, this seems to be a common challenge mentioned here. 

I myself am very easily distracted by background noise and need a very quiet space to be able to focus for any length of time. I wear over the ear headphones and mention to colleagues that I'm needing to finish a piece of work so won't respond for a while. This works quite well, though I do notice that I still feel on edge when there's a lot of movement and activity going on around me even if I'm blocking the noise so my issue isn't solely this. 

I have in the past shared a very small office with some very loud and chatty (Grrrr!!!) colleagues and found this so stressful that I started to think I'd need to find a new job. Thankfully they moved to a different team so the issue naturally resolved itself. 

Your university's support services should be able to give you advice as to your current situation and potentially may be able to offer some help whilst awaiting a diagnosis. University is the first life transition many young adults start to struggle and the point at which learning/ social challenges come to attention. It must be quite common for the support services to have contact with students in the run-up to diagnosis.   

Has your GP /the referral letter given you a sense of how long the waiting list for assessment is? 

Saz

Have you spoken to anyone at your uni? Student services? Your supervisor? Can be helpful to have the conversation. Often you need an official diagnosis for disability services (or whatever it is called at your uni) to set you up some proper support, but they can offer advice, and your supervisor too might be able to offer some support.

I'm a PhD student, and yeah, have been massively struggling because of communication issues and executive functioning being all over the place, even though I don't have problems with the technical side of things. I was also struggling with noise but luckily, a lot of people have gone away or are doing various things for the summer, so now I get some days in our shared office all by myself, which is wonderful.

I have recently disclosed to my supervisor that I was waiting for an assessment (I've messed a project up, my supervisor is currently trying to help me pick up the pieces as I have to hand in a write up and pass to go onto next year, and I needed to explain why). He said probably half the department are on the spectrum, so I was in good company! So you are probably not alone either. I kind of wanted to hold off, felt like jumping the gun to mention it when I didn't have an official diagnosis (though I am 99% sure), but I am glad I told him now. It's taken a bit of pressure off, he is making a clear effort to be more specific about what he wants from me in particular, and for now has taken on some of the responsibility of contacting people for some things for me, and just little things like that are making a big difference.

I don't have anyone to take for diagnosis-my family are scattered all over the place and no one near me; the service in my area were happy for me to provide contact details so they could get info via phone, email or post. Mind you, I am thinking about getting a private assessment if the cost's not prohibitive, just so I can get the piece of paper my uni's disability services need so I can get some support. I'm a bit worried I won't make it otherwise, even with my very supportive supervisor.

Thanks for your reply. To clarify, by lack of attention, I meant difficulty concentrating and completing tasks. 

Hi James

Hello and welcome to the forum. Other people may chip in here, or you might just want to look at some current threads or start your own on a particular topic.

I kind of went through the curve you describe, although I was very open minded about the official diagnosis. Realisation that being fundamentally different probably explained a lot of the things I did and my depression was liberating, but after that the fact that I don't know what difference the diagnosis really makes, and no particular support means I've had some down times since. I'm older than you, and sad at a lot of missed opportunities regarding career and relationships. I'm glad I tried to take many of the opportunities there were.

tintal said:

lack of attention

Wasn't quite sure what you meant here: lack of attention by you, I presume, or lack of attention given to you?

The question of who to take to the diagnostic sessions comes up a lot here. I didn't take anyone, although perhaps could have. Just describing my own childhood (thinking it wasn't massively abnormal apart from losing a parent) was enough for the assessors. Maybe try to talk to your parents anyway and see if they can help - maybe they'd write something?

It seems to me there been quite a lot of autistic PhD candidates and scientists on this forum recently (they're just not all yet tagged 'phd' like yours!). I think science would have been a good career for me, but I never made it. Here's just one thread:

https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/

Also people who have simplified their lives.

Likewise, cheers.