Any autistic PhD students struggling out there?

Hi Iain, thanks for the response. I have written a more detailed reply to everyone below with more specifics on what I am actually struggling with. I am already registered with every possible support service at the university at the moment but I think the major issues are not ASD-related and more down to a poor environment/poor supervision and my reaction is a lot more amplified because I am autistic. It can be really difficult because I do, as you say, put together a whole schedule and break up tasks but my ability to judge time taken to do things is very impaired. I will overload my work schedule massively and then things fall like a house of cards. But I also have the problem that when I try to slow down and do a little less that my supervisors are giving me grief about a lack of work or trying to heap even more on. I can't tell if they are right or they are being unreasonable. There is also no one at all to teach me anything. I am currently getting by reading papers/googling research groups/emailing people from other universities but ultimately I need someone to actually show me what to do when those resources reach their limits.

I am asked regularly to do things that we don't have the equipment for, don't have the reagents for, don't have anyone who has done it before and told to just figure it out. If my brain was firing on all cylinders I might be able to cope with this but at the moment I can't get out of the cycle of frustration > crying/meltdown > time off > try again > frustration... etc. I know no one can really help me with the practicalities but I wondered if others had found ways to break the emotional spiral of meltdowns. Or maybe I am just so burned out after 35 years that it's not possible anymore. Has mindfulness helped you? I do try to do this but I struggle because I don't have an internal monologue, I think only in pictures and 'video' so it is hard to try to pick up on negative thoughts to start being more positive and aware of myself.

Hi Molly,
I have been close to quitting so many times. The only reason I have stayed is because I want a particular job after that will require less interaction with people and it requires a PhD. The lack of structure, deadlines and routine is what I think is really getting to me at times. Not knowing if I have enough for my thesis or not or if I'm on track at all is so difficult. My supervisors seem to have given up on me to be honest but I keep trying to push myself.

I can relate to the not understanding what the expectations are. I have had this multiple times with different kinds of presentations or social gatherings intended to be 'schmoozing the higher ups' kind of events. It is all very difficult. I have had several friends quit in the past few years and honestly I envy them but I also feel like if I stop in my final year that I'd be devastated at how close I got. Then I also think is the PhD all that important? My friends who quit seem happy where they are now but then they don't need a sensory friendly/people limited job either. Such hard choices either way.

Thank you for relating your experience, it really gives me heart to know I am not alone <3

Hi everyone,  

Thank you for your kind and thoughtful responses. It has been nice to hear that there are others who have experienced similar things and able to keep going or find another route that suits them. There is no one else in my building that I am aware of that is autistic and most people that I try to share my experiences with act like I'm being really weird so I feel a little isolated. I am the only person in my research group doing lab work (they all do epidemiology) as well so I am on a different floor from them. Most days I just drift in and out of the lab and no one notices.

I have shared my diagnosis with both my supervisors, the university, the research centre and the disability and wellbeing services. I am on a waiting list for ASD intervention services and psychology but I've been waiting since my diagnosis and have been told it may be another year or so unfortunately. The university disability team and myself drew up a list of reasonable adjustments but my supervisors mostly just ignore them. I have been fighting back and forward for the last 3 years to get them implemented properly but they usually just arrange a big support meeting and then go back to ignoring the adjustments again. There was a massive blow-up before Christmas as I had asked the post-grad advisor for help because my supervisors couldn't agree on a plan for the project. We were having multiple meetings a week for hours discussing it back and forward. I told him at that point the lack of direction and the stresses/hostility in the lab were leading to me feeling suicidal. His response was to enforce 1 hour weekly meetings with my supervisors who suddenly became very hostile and were putting me under a crazy level of pressure with unrealistic demands. It wasn't until Christmas when I had a meltdown in one of our meetings that they told me (and the head of the building) that the post-grad advisor had told them to push me as hard as possible so it wouldn't look to the other students that they were going easier on me because I was disabled. They have backed off on the hostility since but I have sort of given up fighting for adjustments now and just want to get to the end.

I think maybe the biggest problems I am having are not actually ASD-related but because of ASD I am not handling the stresses well - my supervisors are never around, there is no post-doc or staff that I can ask for help if things go wrong, there was also no real plan for my research until the end of second year (we only have 3 years) and most of the equipment I am working with is broken. I had to change my secondary supervisor mid way through second year as she was extremely hostile after I told her about my diagnosis. The final straw was when she snapped at me saying "ASD is not an excuse, you need to take unpaid leave get your mental health sorted out" because I didn't have analysis done for an experiment. I had been flagging this experiment as problematic for months and asking for help with it because the drug we were using turned our cells to confetti but for the assay I was supposed to be counting them. It turns out the experiment wasn't possible with the drug we were experimenting with. 

I keep going through the same cycle: I pick myself up, put together a plan to focus on a set of weekly objectives and then because I have no one actually teaching me something goes wrong and I fall behind. My supervisors response is usually that I have made some error because I am incompetent and I should try to figure out what it is but they won't actually take a look at the work or the experiment at all. They seem to have given up caring if I finish or not. So I go back to struggling, get overwhelmed with frustration, have a meltdown, need time off and the cycle repeats over and over. I can't really set a routine at the moment and that isn't helping - the work I do is part lab, part computer based analysis and so what I am doing changes all the time. Maybe this is what is making things worse. 

In the mean time, I run, swim, cycle and try to burn off all my excess stress energy. I also meditate, do yoga and deep breathing and see a counsellor. I try to practice mindfulness. The only things getting me through at the moment are diazepam and sleeping tablets but I don't like to take them until the worst moments. I just seem to keep hitting the same wall of high anxiety followed by depression. I keep wondering, will I actually finish? It is a great shame to me that I am struggling so badly. Everyone at my lab sees me as incompetent now but when I did my undergraduate project I won the award for the best project even with heavy competition. I won the scholarship for my PhD as well. I just wish I could get out of this cycle of burnout and have my brain running at full speed again but nothing seems to work.

Sorry for the wall of text but I know some of you asked for more context.

Hi, Have you tried reaching out to the university? They should have a disability resource centre/ people that support autistic individuals? I actually also only got recently diagnosed (after finishing my Mphil) so this is the first time I am able to access support from the university. But just to give you an idea- I have a disability advisor, who has applied for funding for mentoring for me. So I now have a mentor, which is a person that has experience working with autistic students and that can provide support and help with things like planning, social situations etc. I will now also get a study skills tutor as I have had issues with writing. My disability advisor has drawn up a student support document which explains about autism and my specific needs eg. that I find noisy environments with people stressful and work best from home for desk work. That I need clear and unambiguous instructions etc. Unfortunately I don't think my supervisor has actually read my support document... but that's another issue. So basically, the university is legally obliged to make adjustments for you due to your diagnosis and they might be able to put in place some support. 

I've also had issues with burnout in the past (when working as research assistant etc) and I think this can happen easily when the PhD is the special interest and in my case, I find i very hard to say no when asked to do something or help with something so I end up taking on too much... Plus I don't do well with external pressure as I already put so much pressure onto myself. So I definitely struggle with boundaries... 

Does your supervisor know you are autistic? I can sense that the relationship with you and your supervisor isn't good... Do they put too much pressure on you? Or don't communicate clearly? What would help you? eg. Would getting some more help in terms of how to plan what  to do in the lab help? Do you need to be able to work from home more for analysis/ desk work? Or maybe it would be better for you to work on weekend when the lab is quieter and take days off in the week instead? Have a think about what YOU think might help. It's not right that your supervisor isn't supportive but I think we can assume that he also would like you to do well and be productive - so in a way you are working towards the same goal and it's in his interest as well to make sure that you can feel comfortable and do well. It does really depend on the supervisor though- sadly I've experienced some very bad lab environments too... Alternatively, I'm just wondering, is there maybe a postdoc or someone else in the lab that you could maybe talk to? They might be able to offer practical advice (if that is what you need) or might also be able to advise you how to best approach your supervisor. I've been struggling to communicate with my supervisor in a good way and to understand what he means, but some of the other people in the lab are now giving me some pointers to better understand what he means and 'what's a normal reaction' and how to approach him about certain things. 

And there is really no way to get an extension? Even with covid? 

Working in genomics afterwards sound great! I would try not to worry too much now about 'what if I don't cope/ have meltdowns?" I do this a lot too... but it isn't helpful and you don't know how things will turn out. The environment and the people you work with make a huge difference too. I think what is useful is to think about what things are important for you when picking a job- flexibility? how many people you work with? the supervision style? how close to the work you can live? the topic? what adjustments you would want and can they provide these? Ie. rather than focusing on 'I might not be able to do it', think about all the things that would need to happen to maximise your chances of success! 

Also I think it is very easy to get very very caught up in lab work or a project or something, and it can be very hard to take a break... I really struggle with weekends and the change in routine, so often just end up working on weekend too and never really taking a break. I know you say that time is running out, but do you think taking a few days off and just taking a step back from everything could help? Is there any activity / anything you really like that could take your mind of it all for a while? (for me that used to be hiking before injuries stopped me from doing it). 

And remember that you have already come so so far. You have degrees, got a phd position and made through most of it ! Those are all huge achievements. 

It can also help to remind yourself why you are doing all this. it sounds like you really really love the field and your topic. I find it sometimes helps to just let myself attend a talk I really like or read some papers (about anything I fancy) and when I feel that curiosity again, it reminds me of how much I love science. 

I don't know if any of this is helpful and I also am not sure if I am the right person to give tips given that I feel utterly overwhelmed at present with my PhD. 

I can't offer any advice about how to get through, I'm afraid, but I can relate. I actually quit half way through my PhD (in Film Studies) years ago, really just feeling overwhelmed I suppose. I struggled with both the lack of structure and, ironically, the format and deadlines. At the end of the first year I did a presentation but got in trouble for not having yet written anything, which wasn't unusual for me because left to my own devices I think and research until the very last moment then just go for it. 

Before the presentation I actually warned my supervisor that I might not turn up, which wasn't well received! I also turned my presentation into a kind of performance piece, which apparently offended some people (just because it was a performance, not because of the content). When I was told this, I burst into tears because I felt so confused as to what I'd done wrong. I don't think it occurred to me that there were rules and form.

At that point I wrote twenty thousand words and everyone was happy. This has always been my way, to under pressure conform out of extreme fear! But soon after I ran into the same problems, and even with a change of supervisor and an attempt to move my project into creative writing, I reached the point where I would literally fall asleep when trying to work because my brain was shutting down. I decided too that the only future with the PhD was teaching, which I couldn't face (having tried that already). One thing you have at least is the potential for a career in which you can feel comfortable, so maybe try to use that as a final motivation more than anything (alongside the satisfaction of having pushed through).

What you also have that I didn't is your diagnosis, and the self-knowledge and context that brings. I was literally floundering, still the same confused child that you were when no one realised you needed consideration. I am totally with you in feeling like, as an adult, people still don't make room for difference, but it's something to at least know your own needs and be able to articulate them. I don't know how you can tap into that, but I really hope you're able to use it to at least get some distance on what you're experiencing. I don't wholly regret giving up my PhD, but I feel sad. Don't feel sad!

Bean said:

There is no or very limited information for me to help myself.

Actually there is a wealth of material out there that can help, but you need to track it down.

You can use the uni online library or a site like Library Genesis that offers a huge number of books for free for research purposes - I found around 50 books on there that I am working my way through and there are more appearing all the time.

Gutbrush's recommendaton for the disability service is your best bet in the short term as you are classified as disabled and the uni is required to make reasonable accommodations for this and it may buy you some time or at least get your supervisors educated on what is required of them.

In practical terms you need to put your intelligence to use and start scheduling, breaking into tasks and genarally organising yourself to do all the annoying stuff that makes up the work.

We tend to work well with routine so start making one and sticking to it.

I'm afraid the idea that the job at the end of all this is the solution is a common fallacy - it is just a different batch of stuff with similar jobsworths to make it annoying most of the time.

You will need to develop the skills to let the stress from this wash over you - learn about mindfulness and it will be a good starting point.

For us to help you, please let us know what sort of things cause you to lose traction in progress - be specific if you can be (not about the technology mind you, that will probably go over our heads) and we can try to offer some help on these parts for now,

It takes time but it does get better.

I have a PhD in molecular biology and worked in research, but am now retired. Your university should have a disability support service that is supposed to act proactively to help you get useful accommodations. Autism is classed as a disability and if your institution are not supporting you to the point that you have an even playing field in regards to completing our PhD with non-disabled students, then they are guilty of discrimination on the grounds of disability. I would contact the disability support people formally, by letter, and mention the words 'discrimination' and 'disability'. These words will often get even the most lackadaisical university disability team to start actively helping. You are, presumably, a member of a students' union. They will have a welfare officer and access to legal advice, contact them with your problems and tell them that your needs in relation to your disability are not being met.

How awful that your supervisors aren’t understanding, I had some arguments with my undergrad supervisor because he was trying to force me into the NT box like all the students who came before me, in the end he let me do things more my way. I might have an opportunity to do a PhD in a year or two and thankfully my current manager and the doctors likely to be supervising my work gel better with me. Does the university have a disability service you can reach out to? Or is there a psychology department with a student led counselling clinic that you can vent to if you think that will help? Or are you hospital based? My uni will be 6hrs away from my workplace if I join the PhD programme! My husband is helped by talking things out with his therapist. I personally destress by exercising. Good luck to you hope everything works out sounds like you’ve achieved a lot already

Hi- I can relate to this a lot- though I only just started my PhD 2 months ago and it is in developmental neurobiology. I will reply properly when I am home and have a bit more time, but I just wanted you to know already that you are not alone. And I just want to say that it’s a great achievement that you have come this far already!