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Any autistic PhD students struggling out there?

Bean

I'm new to the forums and also somewhat newly diagnosed (2019) despite a lifetime of serious struggles. The diagnosis was a bit of a rollercoaster, although it wasn't much of a surprise. I was angry that no one had noticed and helped when I was a child as I had pretty obvious signs (communication difficulties, social isolation, extreme sensory sensitivity, rigid routines) but I think being able to talk/mask and doing well academically (high scores in tests but dreadful executive functioning and severely low attendance) meant they just put my difficulties down to bad behaviour.

I was also hopeful that now I might get some support and understanding. But what I have found is that the diagnosis didn't really matter - people still treat me like I'm behaving badly, still judge me for everything, don't listen or make it difficult to get reasonable adjustments put in place and every single piece of advice out there is aimed at the parents or carers of autistic children. There is no or very limited information for me to help myself. I also keep hearing on repeat that at least I can talk, at least I don't have IQ deficits, that I don't have it as bad as others. All of this has just led me to a really bad place where I feel like no one understands how difficult daily life is for me and there is no help and I will never fit in anywhere. I often wonder what is the point in trying to exist in this world when everyday is a battle?

I'm trying to finish my PhD in cancer research because biological science is my special interest but I am really struggling. I am in my final year and I am behind where I would like to be, my supervisors treat me like an infant that can't do anything right and I am burning out all the time and having meltdowns. I can't take a break - the way my funding works is that I would just lose more time and an extension is not possible. The only thing that is keeping me going right now is that in 6-8 months I could have a job where it all gets easier. But now I worry that I won't be able to cope with that either. My intention is to apply for a position in genomics where I spend most of my time analysing genetic data on a computer (which I really enjoy) but what if it is too much and I keep having meltdowns?

I just wondered if anyone else was in a similar position or had similar struggles, and how they managed to cope. Or even if you aren't coping it would be nice to know it's not just me!

Thanks for reading,

Bean

Parents

  • 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! 

Reply

  • 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! 

Children
  • in reply to Ann :)

    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.