Title: The Physical Health and Healthcare of Autistic Adults
Name: Elizabeth Weir
Research group: Autism Research Centre
Supervisor: Dr Carrie Allison and Dr Simon Baron-Cohen
Can you give us a short background into what your PhD/MPhil was about?
When I started my PhD, there was almost no research into the health and healthcare of autistic adults, particularly those 30 years and older.
My PhD work aimed to establish whether there were differences in chronic health risk, lifestyle, or identity between autistic and non-autistic adults; specifically, I developed the largest studies to date on the chronic disease burden, lifestyle (e.g., diet, exercise, and sleep), sexual activity and health, LGBTQA+ identity, substance use, and self-reported healthcare quality of middle-aged and older autistic individuals.
How would you sum up your main findings?
Based on my research, autistic adults experience higher rates of physical and mental health conditions; are less likely to meet minimal goals for exercise, sleep, and diet; less likely to be heterosexual; more likely to be asexual or ‘other’ sexual orientation; and are more likely to self-medicate using recreational substances to manage their behaviour (including autism symptoms) and mental health.
Critically, autistic adults had similar rates of sexual activity and of sexually transmitted infections—breaking down misconceptions about autistic peoples’ sexual activity and emphasizing the need for education on sexual health and safe sex for all.
In addition, autistic individuals were far more likely to self-report lower quality healthcare than others, including alarming problems with accessing basic levels of healthcare and communicating with healthcare professionals. It should be noted that these findings are in line with previous work from other research institutions, but also that future research should aim to confirm these findings in larger, population-based studies.
Much of the work done during my PhD has been published in peer-reviewed journals like The Lancet Psychiatry, Nature Communications, and Molecular Autism.
What made you want to do a PhD?
It was actually really outside of my original “plan” to do a PhD. I had enjoyed working as a research assistant during my undergraduate studies and was planning on applying to attend medical school in the United States where I’m from (in the US you can only attend medical school as postgraduate study).
I decided to apply for the 1-year MPhil course to see if I wanted to pursue a research career alongside a clinical path. However, once I arrived, it was pretty clear to me that my passion for research greatly outpaced what I had felt when shadowing physicians. And I realized that I wanted to make research my full-time focus. I was also really passionate about my research topic; it felt (and still feels) really unacceptable to me that there was so little research on the health and healthcare of autistic people—a group that makes up 1-2% of the population based on most recent estimates.
What was your best day during your PhD?
It’s really hard to pin down a specific day. I think that there have been so many fun days for different reasons. Getting papers published and presenting at international conferences are certainly ‘obvious’ highlights, but I also just really loved sitting and having lunch with colleagues from the department.
I just have felt incredibly lucky to spend time with such funny, bright, and kind people over the course of my PhD. I know I’ll remember some of the very small moments talking about a favourite podcast or listening to neighbouring teenagers’ band practice from the orchard at lunchtime as much as I’ll think about the more traditional ‘big’ moments.
What was your worst day during your PhD?
I know I’m not alone in feeling like the pandemic has been a huge challenge. In March 2020, I booked a flight and left England 16 hours later due to recommendations from my college and the University. I was just so scared of how I would be able to continue my PhD from abroad and how long this could go on.
I spent months of my final two years in the United States, and I really don’t think I could have gotten through it without the support of my supervisors and lab mates. I felt really lucky to be able to stay connected on zoom as much as we did—and particularly in our weekly lab meetings and board game calls.
It was a really important connection for me to stay buoyed to my work. Once I was back in the UK, I went on so many walks with friends from the lab, discussing science as well as the latest trashy tv show we had watched on Netflix. Along with my friends from Queens’ college, they really got me through some of the toughest months of the pandemic and I’m so grateful for that.
Do you have any words of advice to future PhD/MPhil students in Psychiatry?
I found that one of the most difficult aspects of doing a PhD was the incremental progress—sometimes it feels like you are doing so much work, but you can’t see the bigger picture. A friend of mine took up crochet to help with this and I decided to try knitting.
I found it immensely helpful to be able to see physical progress each day on whatever I was making, and it helped to ground me in the progress that I was also making toward my PhD. Fiber arts may not be your thing, but I’d try to find something that helps to ground you in a similar way.
Also, take breaks when you can.
Rest is a really important part of a PhD because it is a long course; if you push yourself to the point of burnout, it is going to take far longer to recover than if you take breaks regularly. I found going on walks in the botanic gardens and the Grantchester meadows (sometimes with friends and sometimes on my own) to be a really important part of my rest.
Getting away from my research and taking time for myself sometimes lead to my most innovative ideas on how to approach my work—and sometimes it just meant that I got to shut off my brain for a minute in a way that I needed!
What do you hope to do next?
I’m thrilled to be staying at the Autism Research Centre as a postdoc and am really excited about the new projects I’m working on.
I have also been appointed as a Rokos PDRA Fellow at Queens’ College and am delighted that I get to stay involved there.
While I’ll be continuing some of the work that I did during my PhD, I’ll also be transitioning to exploring the educational and employment outcomes of autistic individuals, as well as translating some of the recent work from the ARC into key recommendations for healthcare providers, policymakers, and educators.