Any autistic PhD students struggling out there?

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
  • I’ve got to be honest if my personal experience is anything to go by do not expect it to get any easier as you progress beyond PhD.

    I’m not trying to discourage you. Scientific research has been a huge source of joy of my life and I still want a career in scientific research. However as things stand at the moment there are things that are typically difficult for autistic people that are part of academia but you’re just not gonna get any help with.

    Writing papers is a big one. I Expect you’re confident and competent to technically describe your research. However there’s a lot more to writing a research paper than describing technical aspects of research. Research journals expect you to tailor the style of your writing to what their readers expect. Writing good abstracts and introductions that motivate and interest the reader is arguably as important as technical rigour. At least as far as editors are concerned.

    For senior researchers a research paper is generally a small snapshot framing a small part of a larger program of research. The editor and peer reviews will probably want to know how your research figures in the larger research program of your research group.

    Then there is the issue of peer reviewers. People reviewing your work are typically also the people who are your competitors as researchers. They have their own axes to grind. So as much as they claim to be impartial and unbiased you need to consider how they might view research but does not Play well with their own.

    These skills have nothing to do with technical expertise or rigour or being able to describe work technically. It’s politics and storytelling. No offence but I don’t feel well equipped for it maybe that’s an autistic thing I think it probably is.

    My advice to you is if you seriously consider a research career after your PhD. Do your absolute best to get at least one good quality research paper published in which you are the first author before the end of your PhD. And if at all possible get a co-author on board as a second author who can help you with the editing because frankly if you can get somebody else to write the introduction and abstract for you it will help a lot.

    Then there is a grant application writing.

    It’s unusual for PhD is to make grant applications. Postdocs occasionally make grant applications in coordination with their principal investigators. But the process of writing a grant application is effectively a process of persuasive writing. Again as an autistic person I find this difficult I expect you will too. I imagine making the application with another person who can help with the editing will be of great assistance to you and in fairness that’s not unusual at the post doc stage. But remember you do need to make a grant applications before you move towards the later stages of your career to more senior roles otherwise you will not be considered for those senior roles because they are mostly funded by you making grant applications.

    Then there is networking.

    So much modern research is collaborative if you’re not able to make good collaborative relationships with other labs it will hamper your career. Not only because you will lose the opportunity to do research that will make use of special skills and equipment available in other research groups but because when you move onto your next position these are the people who might be determining whether or not you get hired. Developing a good relationship with them will greatly increase your employability. Research community in any given area tends to be quite small. people tend to know each other and if they don’t know you they are less likely to hire you.

    Your instinct is probably to knuckle down to focus on your research which is good. However if you don’t go to and engage with research conferences and similar networking events, and get to know people, it will harm your career in the long run.

  • Hi Peter, it has been really nice to read about your experiences, good and bad! A lot of the time I read very good advice that would only really help if we lived in an ideal world where everyone was treated as they should be. Sadly this is not the reality we live in. 

    I am actually really good at the reading and writing part - I have already published some findings, reviews and editorials. I have also taken part in the review process and I understand how difficult it can be to navigate. I do very much enjoy this part and seem to be quicker at it than my peers. I am also really good at lay writing and public engagement work where I translate what I do into something intelligible to non-experts.

    Where I fall down is the social aspect - if I'm on top of my game I can socialise and network and mask and everything is fine though I eventually seriously deplete my ability to function if I do it too much. The problem at the moment is I am so behind and under so much pressure my functioning is very impaired. I have become a stuttering mess when I try to communicate. People have a tendency to dislike me - one of my earliest memories as a child is when another girl that I didn't know came up to me and said 'I don't like you, I don't know why, I just don't' and she walked off again. This has sort of been my experience in life - I am always 'off' to other people and they can't figure out why. This part of academia is why I have decided it is not for me - I love the research, the science, the writing, etc., but the social requirements are beyond my ability to deal with. I wonder how they would handle these things if I was unable to talk at all? Can non-verbal people navigate academia? How does that work?

    As it stands I want to work in the health service in a much more structured career and do computer based genomics work and research - I have found that I absolutely love data science and coding so this seems like a niche I can fit into (hopefully). I just need to make it 6 months and be able to get the data I need to write a thesis and to do that I need to stop having meltdowns from building frustration at a lack of resources/support in my Centre. 

  • Then something else to consider, the NHS can be fussy about the qualifications they will accept for different scientific roles. Just having a relevant PhD won't always cut it. You'd best check if you need any special accreditation / qualifications a head of time.

  • I'm pretty good at independent working, but I do reach a point when I don't know the best way forward because my experience is limited. This is when I feel it would be good to either have a post-doc or lab tech present. Because sometimes you just have to show someone what you've done, very often you've done something small or silly and it just takes a human to actually look to see that.

  • I'm firmly of the belief that PIs should either have senior post-docs or senior technicians/experimental officers available, or have the time available to do 'bench supervision' themselves, before they are allowed to take on PhD students. Too many PhD students are left to flounder without having someone with 'hands on' experience in the lab to show them the ropes and trouble-shoot.

  • Thank you, this is a really good idea. I have an external examiner in mind though I hadn't thought much about internal. Maybe I should put more thought into that before it's too late. Even if I don't want to run the risk of putting blame on my supervisors I could highlight that my diagnosis came in the middle of my PhD, the effects of covid lockdown on lab work and that I had to change my entire project midway due to a change in supervisor in year 2.

  • I would amass as much documentation about the difficulties you have experienced and arrange it chronologically. Things such as 'leaning on you' so that it looks like you are not being given privileges because you are disabled, is an extreme form of discrimination. When it comes to selecting examiners for the viva exert as much pressure as you can to get your choice and not some cronies of your supervisors. I know from experience that if you contact your internal and external examiners about the lack of effective supervision you have experienced, and make them aware of it, they will, if they are reasonable people, make allowances. I knew someone whose supervisor completely changed his whole area of research  during his PhD and consequently lost any interest in his current student's work and ceased to offer useful supervision. The internal examiner was made aware of this and ensured that the external also made allowances.

  • I thought about this too and have been in contact about what I would need and they have said that with the PhD I am currently doing I would be fine. Worst case scenario I take up another less specialised role until that one becomes available and I am already on a waiting list for that. Thank you for the heads up though Slight smile

Reply
  • I thought about this too and have been in contact about what I would need and they have said that with the PhD I am currently doing I would be fine. Worst case scenario I take up another less specialised role until that one becomes available and I am already on a waiting list for that. Thank you for the heads up though Slight smile

Children
  • I'm pretty good at independent working, but I do reach a point when I don't know the best way forward because my experience is limited. This is when I feel it would be good to either have a post-doc or lab tech present. Because sometimes you just have to show someone what you've done, very often you've done something small or silly and it just takes a human to actually look to see that.

  • I'm firmly of the belief that PIs should either have senior post-docs or senior technicians/experimental officers available, or have the time available to do 'bench supervision' themselves, before they are allowed to take on PhD students. Too many PhD students are left to flounder without having someone with 'hands on' experience in the lab to show them the ropes and trouble-shoot.

  • Thank you, this is a really good idea. I have an external examiner in mind though I hadn't thought much about internal. Maybe I should put more thought into that before it's too late. Even if I don't want to run the risk of putting blame on my supervisors I could highlight that my diagnosis came in the middle of my PhD, the effects of covid lockdown on lab work and that I had to change my entire project midway due to a change in supervisor in year 2.

  • I would amass as much documentation about the difficulties you have experienced and arrange it chronologically. Things such as 'leaning on you' so that it looks like you are not being given privileges because you are disabled, is an extreme form of discrimination. When it comes to selecting examiners for the viva exert as much pressure as you can to get your choice and not some cronies of your supervisors. I know from experience that if you contact your internal and external examiners about the lack of effective supervision you have experienced, and make them aware of it, they will, if they are reasonable people, make allowances. I knew someone whose supervisor completely changed his whole area of research  during his PhD and consequently lost any interest in his current student's work and ceased to offer useful supervision. The internal examiner was made aware of this and ensured that the external also made allowances.