Any autistic PhD students struggling out there?

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.

Hello Bean, I think some of the challanges you are experiencing with the lack of being taught is actually part of the doctorate process.

From my experience at Uni, the undergrad process was pretty much being spoon fed the training  with a little self research in the final years. The Masters was maybe 50/50 teaching and researching and the Doctorate was almost exclusively researching.

I believe the doctorate is where you have to work as if you were in a job with no-one to teach you and you need to find the way to your conclusion (thesis in other words) all on your own. It requires skills you need to develop on your own and there are often problems put in your way to see how you cope with them.

Maybe that is just the uni I went to (Strathclyde).

If this is still the case then you need to learn how to respond when the lab kit is broken. Do you ask to have it fixed or do you find an alternative way to perform the same testing, maybe tring to access other departments kit or even external companies kit. Maybe you need to find a different way to perform the test altogether - this shows your ability to creatively problem solve.

The hostility you are experiencing is pretty much par for the course with the rest of the world - expect it in your work environment later on too unfortunately.

So with all this bad news, how should you react?

To cover your back for the lack of working equipment and failure to provide reasonable accommodations - document everything and keep writing every week to chase on these. Yes you will cheese people off but you will benefit so much from getting this sorted.

People will procrastinate on these things because they are lazy - knowing you are copying in the diiabilities department on their failure to do thier job is a powerful reminder that they can end up suffering for inaction or potential discrimination. Stop caring about what these poeple think and look out for your own needs as much as you reasonable can.

If after a few months of them stalling, you find no progress then escalate to the head of department or faculty and ask why such discrimination is allowed to continue. With proper documentation, regular chases and you doing things by the book then you will set off alarm bells that will result in the staff getting a rocket from above to sort things out.

As for your teaching, I  don't think you can expect people to do this - by all means ask nicely and chase a few times, but it would be best to work this out for yourself as it is how you will need to do this in the job after uni.

I used to find meditation the best way to de-stress in a pinch - not always so easy to get the space to do, but oddly churches and religeous spaces were often the best places for peace and quiet (odd for me as an athiest).

To help with your scheduling - you know you are overloading it so change it to something realistic.You will probably need to sacrefice a lot of your other activities to make the time, but this is all part of the crucible that is the doctorate - it is very focussed, intense and tempers your abilities to the point of being quite painful at times.

That is enough to digest in this chunk 

Thanks Iain, maybe I need to find some quieter spaces and time for meditation. This is something I have trouble sticking to rigorously because my day-to-day plans change depending on whether I am doing bench work or computer work.

I understand what you are saying about becoming a more independent researcher at this point. I do feel like I am exhausting every possible avenue with my work before asking for supervisor support. Most of the time I am saying X didn't work, I think it may be this, this or this and so I propose fixes for it or I ask if I can try a different type of experiment that may not take so long/be so difficult and outline what that would look like. Usually I am told that they don't know the answer so to just figure it out myself. But I am never allowed to swap to a different experiment even if the one I am doing is not working after a huge number of failed attempts. Trial and error is great but when I am in my final year and things are behind I really do need some direction from someone that knows what they are doing. I try contacting other researchers in other facilities as well but the equipment I have access to is often not what they are using and not ideal for what I am trying to do.

I will keep better documentation of difficulties as you say however after fighting for the past two years over these things I worry it is just uselessly expending energy I could be putting into my research. I am also getting everyone pretty annoyed at me and since a lot of science workers in academia, industry or the health service are heavily involved with each other I feel I may be shooting myself in the foot.

Iain said:

To help with your scheduling - you know you are overloading it so change it to something realistic.You will probably need to sacrefice a lot of your other activities to make the time, but this is all part of the crucible that is the doctorate - it is very focussed, intense and tempers your abilities to the point of being quite painful at times.

This is probably key here. You are right, I think I need to sacrifice other things and spread my lab activities out. Perhaps I am being too rigid in trying to complete a set of work all in one go and would be better spreading it across a longer time frame and mixing it with some of the computer-based analysis so I am constantly seeing results even when the lab work is not going well.

Thanks Iain, maybe I need to find some quieter spaces and time for meditation. This is something I have trouble sticking to rigorously because my day-to-day plans change depending on whether I am doing bench work or computer work.

I understand what you are saying about becoming a more independent researcher at this point. I do feel like I am exhausting every possible avenue with my work before asking for supervisor support. Most of the time I am saying X didn't work, I think it may be this, this or this and so I propose fixes for it or I ask if I can try a different type of experiment that may not take so long/be so difficult and outline what that would look like. Usually I am told that they don't know the answer so to just figure it out myself. But I am never allowed to swap to a different experiment even if the one I am doing is not working after a huge number of failed attempts. Trial and error is great but when I am in my final year and things are behind I really do need some direction from someone that knows what they are doing. I try contacting other researchers in other facilities as well but the equipment I have access to is often not what they are using and not ideal for what I am trying to do.

I will keep better documentation of difficulties as you say however after fighting for the past two years over these things I worry it is just uselessly expending energy I could be putting into my research. I am also getting everyone pretty annoyed at me and since a lot of science workers in academia, industry or the health service are heavily involved with each other I feel I may be shooting myself in the foot.

Iain said:

To help with your scheduling - you know you are overloading it so change it to something realistic.You will probably need to sacrefice a lot of your other activities to make the time, but this is all part of the crucible that is the doctorate - it is very focussed, intense and tempers your abilities to the point of being quite painful at times.

This is probably key here. You are right, I think I need to sacrifice other things and spread my lab activities out. Perhaps I am being too rigid in trying to complete a set of work all in one go and would be better spreading it across a longer time frame and mixing it with some of the computer-based analysis so I am constantly seeing results even when the lab work is not going well.