Author: jo.barrell

Gram stain training at Sally Mugabe Central Hospital Laboratory. Image credit: Tinashe Mwaturura, co-investigator and CREATE PhD Fellow at The Health Reearch Unit Zimbabwe (THRU-ZIM).

After a couple of months in Zimbabwe, David Hettle, one of our Global Health Fellows, reports on how his Fellowship is growing and shares what a great opportunity it is to be involved in all different kinds of research: qualitative, quantitative, and with many different researchers.

My work, collaborating with researchers in the AVAPAR (Quality Improvement and Assay Validation of Automated Platforms testing for Antimicrobial Resistance in Blood Culture Isolates), has been a constant source of moving parts, things to do and slight developments/adaptations, which I guess fits in well with the Quality Improvement approach to the study.

Improving quality and efficiency

Largely, the same aim remains, towards improving the quality and efficiency of blood cultures used in the diagnosis of infection, specifically neonatal sepsis in Sally Mugabe Hospital in Harare. There has already been an initial phase of this work undertaken in the last few years, validating and exploring the use of two molecular diagnostic platforms in this low-middle income setting, recognising the common organisms implicated in neonatal infection. So, this next phase builds on this, developing training for clinical and laboratory staff at the point blood cultures are taken (to help in the diagnosis of infection) and processed to improve efficiency and ultimately aim to deliver results back to clinicians in a timely enough manner to impact the antibiotics used in the care of neonates.

What have I learnt so far?

First, as much as writing ethics applications may come with a groan, amending the protocol to include aspects of the work that I will now be leading and involved in gave me time to consider the context, as well as visit and meet many of the teams involved in the blood culture process – from new doctors and nurses on the Neonatal Unit, to the laboratory staff, through to the neonatal consultants and clinical directors, in order to ensure that this is a process embedded in the practice which happens day to day.

Secondly, doing so also gave me the opportunity to review the work done previously in this area and discover areas which I could contribute to. I’ve been working on developing training materials and delivering training for aspects of the blood culture process – Gram staining, sensitivity testing, and also reviewing the current process to ascertain where improvements in turnaround time can be made.

Further training

This week, the new molecular platform we are trialling for blood culture isolates, the COBAS ePlex platform, arrives in Harare, and with it comes further training for lab staff and the study team alike. Then, in the next few weeks, the enhanced blood culture process we have developed will be introduced and practically supported by study team in the coming months, aiming to reduce the turnaround time for blood culture isolates from a likely 72-96h after blood cultures have indicated ‘positivity’ to 24-48h before provisional organism identification and antibiotic susceptibilities may be available.

Ultimately, we hope that this will mean that clinicians can be informed of results which will allow appropriate alteration antibiotics in time to make a difference to neonates.

More to explore

Finally, I’ve had the opportunity to also consider more conceptual aspects of antibiotic practices in this setting and have been developing a workshop along with some of the qualitative researchers here to explore the conceptualisation of antimicrobial stewardship in Zimbabwe. What does it mean for this setting, given that stewardship as a concept has come from settings with far different approaches to management of infection in terms of availability of diagnostics, systems in place and where you can obtain antibiotics from. There is lots to explore and I’m lucky to have had the chance to meet and be coordinating with two Fleming Fund Fellows to look into this further in the next few months.

Further information

David is based at the Health Research Unit Zimbabwe, at the Biomedical Research and Training Institute (BRTI) in Harare.

The Elizabeth Blackwell Institute Global Health Research Fellowship scheme 2024 is funded by the Department of Research and Innovation at North Bristol NHS Trust using unrestricted funding accrued during vaccine trial work with the following companies: AstraZeneca, Valneva, Moderna and Janssen. 

A team of researchers from the University of Bristol is investigating the causes behind heart and circulation problems in Long COVID.

It goes without saying that the COVID-19 pandemic had profound effects on society and health across the globe. Between April 2020 and February 2022, around 4 million individuals had tested positive for Covid-19. Up to February 2022, an estimated 44 million people had the virus in the UK alone*.

Some people who have recovered from the immediate effects of COVID-19 describe ongoing symptoms including poor exercise tolerance, fatigue, chest pains, inappropriate increases in heart rate when standing and dizziness, common symptoms of ‘Post-COVID-19 Syndrome’ (sometimes termed long COVID-19). These symptoms typically last for more than 12 weeks and can be severely debilitating.

Post-Covid

As of March 2023, an estimated 1.9 million people in the UK self-reported post-COVID-19 syndrome symptoms. At present, the reasons why some people develop the syndrome and others do not is unknown. Understanding the causes of the condition may help in the development of new therapies to aid recovery.

Evidence has suggested that issues with multiple body systems might be driving post-COVID-19 symptoms, including the brain and parts of the nervous system that control heart rate and blood pressure.

A team from the University of Bristol’s School of Physiology, Pharmacology and Neuroscience including Dr Ahmed El-Medany, Dr Emma Hart, Dr Angus Nightingale and Dr Katrina Hope, used funding from a combined Elizabeth Blackwell Institute/Development Alumni Relations Office scheme for COVID-19 research, alongside funding from Bristol and Weston Hospitals Charity, for a pilot study investigating the effects of COVID-19 on bodily systems that control heart rate and breathing.

Carotid body

Nestled within branches of the carotid arteries – key blood vessels in the neck – are the carotid bodies. These tiny organs, around 2mm to 6mm across, monitor blood oxygen as well as CO₂ , blood pH and temperature: they can thus influence heart rate, blood pressure and breathing rate. Carotid bodies are also potentially particularly susceptible to infection by the Coronavirus, which might explain some of the symptoms of post-COVID-19 syndrome, such as breathlessness, inappropriate increases in heart rate, and dizziness.

Dr El-Medany explains: “We were aiming to investigate whether the carotid body is involved in the development of post-COVID-19 syndrome in men and women. We recruited patients from two populations: Firstly, a group with Post-COVID-19 Syndrome, with symptoms lasting more than 12 weeks, and secondly a matched control group with COVID-19, whose symptoms lasted no longer than 4 weeks – as per NICE guidelines. We compared the carotid body control of heart rate and breathing at rest and during exercise.”

Elevated sensitivity

Dr El-Medany continued, “We showed for the first time that the carotid body amplifies its sensitivity to chemical changes in non-hospitalised patients with post-COVID-19 syndrome compared to a control group, and that this hypersensitivity is  correlated to hyperventilation and poor breathing efficiency during exercise in affected patients. This elevated sensitivity could explain several of the ongoing symptoms experienced by patients living with post-COVID-19 syndrome.”

“These findings suggest that modulating carotid body excitability might be a new treatment option for post-COVID-19 syndrome. Our group has previously demonstrated a mechanism by which targeting receptors in the carotid body might help to reduce its overexcitability in an animal model of hypertension and heart failure, and this could also be a viable strategy in humans with post-COVID-19 syndrome.”

Continuation

As well as several international presentations and a publication resulting from the study, the group has used the pilot data generated in an application to the Medical Research Council Research Grant (Experimental Medicine Panel). Funding of £750K, was recently awarded, enough to  initiate a new, 3 year project which will start in September 2024.

*source BBC https://www.bbc.co.uk/news/uk-51768274

Image: Group of Brazilian and UK researchers in a field day in a traditional Amazonian community (Quilombola) during the workshop led by Dr Penfield and Dr Nobrega, funded by the British Council (July 2024). Other researchers from Bristol in the photo are Dr Jaskiran Kochan, Dr Shirley Famelli, and Dr Rayane Pacheco.

Researchers from the University of Bristol are spearheading new efforts to understand the impacts of climate change on the Brazilian Amazon and its Indigenous and traditional communities.

The Brazilian Amazon is home to thousands of Indigenous and traditional communities; many of these rely for their livelihoods on the biodiversity of the region and its numerous ecosystems. The ways of life of these communities are threatened, both directly and indirectly, by climate change: for example, on-going record-breaking flooding or drought events poses great risks to riverside communities or those who depend on river-based transportation, and fishing might become even more limited after repeated droughts.

Multidisciplinary team

Researchers from the University of Bristol, Dr Rodolfo Nobrega from the School of Geographical Sciences and Dr Filipe França from the School of Biological Sciences, have established a multidisciplinary team which will work to understand and address the issues caused by climate change on these communities. The work was initiated with funding from the Elizabeth Blackwell Institute Rapid Research Funding Call and supported by the Knowledge Mobilization Research Grant from the Trent University, Canada. 

“Our work involves researchers from the UK, Canada, Germany, Brazil and USA,” said Dr Nobrega, “and includes experts from different disciplines, including areas such as health, human, social, environmental and climate sciences. We’re also collaborating with local stakeholders such as NGOs and representative from Indigenous communities.”

Three tranches

Initially, the funded work was split into three tranches:

1) An investigation into the climate vulnerability of Indigenous territories and protected areas to prioritise particularly vulnerable regions 

2) Assessment of the socio-economic climate burden on local communities and forests 

3) Co-development of solutions for climate adaptation and mitigation with local partners and communities

Workshops and focus groups

A 4-day workshop took place in July 2023 at Trent University, in Ontario, Canada, and included delegates from the UK, Brazil, Canada, Germany, and the USA.

“As well as the interdisciplinary workshop in Canada,” explained Dr Nobrega, “we also conducted  numerous focus group meetings in the Amazon rainforest itself. These activities were also supported by the SynPAm project funded by PolicyBristol, and included a multidisciplinary team of experts and community representatives, and addressed the impacts of climate change on human and ecosystem health in Indigenous and local communities and territories across three regions in the Brazilian Amazon”. 

The ideas and perspectives that the team gathered during the project were published a joint statement in the scientific journal Communications Earth & Environment, and supported a publication in Current Biology. These outcomes have been instrumental in securing a pivotal shift in funding for Amazon research. Recently, for example, the Amazon +10 initiative introduced a prerequisite for including leading local research institutions and members of traditional communities in research proposals for their funding calls.

Statement of intent

“In the statement, we emphasised the need to protect the intricate web of life in Amazonia with research across disciplines, and collaborations across sectors,” said Dr Nobrega. “We must prioritise the needs, perspectives, and insights of Indigenous and other traditional peoples – these communities are at the forefront of efforts to safeguard their wellbeing and territories, and it is vital to include Indigenous researchers and members of local communities as central contributors to the research team.”

Proposals and publications

The team’s work has resulted in numerous research proposal submissions that aim to contribute to a broader understanding of ecological dynamics in Amazonia and its Indigenous communities.

“We have submitted several project proposals motived by the network and discussions generated by our work”, said Dr Nobrega. “We have been awarded funding by the British Council for a workshop on Integrated Perspectives on Biodiversity and Climate Change in Amazonia past July, which integrated over 40 researchers from UK and various Amazonian regions and communities”. The workshop was organised by Dr Amy Penfield from the Department of Anthropology and Archaeology (School of Arts) and Dr Nobrega, Dr França and scholars that work in the Amazon, namely Dr Sabina Ribeiro, Dr Cátia Macedo, and Dr Maurício Costa. The consortium has also been awarded with grants in Bristol (NERC FLF for Dr França in the School of Life Sciences, ERC Starting Grant and  for Dr Penfield, Daphne Jackson Fellowship for Dr Shirley Famelli), and they are currently awaiting feedback on further proposals from NERC, the UKRI Economic and Social Research Council, and New Frontiers in Research Fund (Canada).

“Seedcorn funds such as this from the Elizabeth Blackwell Institute are extremely useful to create momentum needed to put researchers with similar interests together to generate workable hypotheses and data; I’m very grateful for the support from the EBI. This opportunity enabled us to promote activities crucial for supporting the establishment of an international consortium focused on the socio-ecological diversity of the Brazilian Amazon.”

Image l-r: A young Elizabeth Blackwell; Henrietta Lacks statue outside Royal Fort House, Bristol; A-Book-of-Medical-Discourses, by Rebecca CrumplerUS National Library of Medicine

In January 1859, Elizabeth Blackwell became the first ever woman on the British Medical Register. She was born in Bristol on 3 February 1821, and throughout last year we celebrated her bicentenary. Here we reflect on the lives of three women trailblazers of modern medicine.

The Elizabeth Blackwell Institute is honoured to bear the name of Elizabeth Blackwell in recognition of her outstanding contribution to healthcare both in the US and here in the UK. She was a pioneer, instrumental in many campaigns for reform, launching numerous health schemes, a tireless worker for health care, and a life-long opponent of slavery.

The opportunity to celebrate Dr Blackwell’s life of work prompts us to also reflect on the first Black female to earn a medical degree. Dr Rebecca Lee Crumpler graduated from New England Female Medical College, Boston in 1864, fifteen years after Dr Blackwell became the first woman to achieve a medical degree in the US. Yet, when we searched for an image of her for this blog, we realised that there are no validated photographs of her[i]. Instead, search engines populate erroneous illustrations of individuals who are identified as Dr Crumpler, but are in fact Mary Eliza Mahoney (first Black nurse in the US), Rebecca Cole (the second Black woman physician in the US), Elizabeth Blackwell, Eliza Grier (the first Black woman licensed to practice medicine in the state of Georgia), and other individuals. We will never be certain what Dr Crumpler looked like.

Recognition of Dr Crumpler’s life and work have been impacted by in prejudice. Her burial plot was unrecognised for more than 125 years, as people were walking on the grass where Dr Crumpler and her husband were buried at Fairview Cemetery in Boston. It was not until 2020 that the plot received recognition thanks to a group of Black historians and physicians who were determined to honour her life by installing a headstone at Dr Crumpler’s grave site[ii].

Dr Crumpler was raised by her aunt in Pennsylvania, who might have influenced little Rebecca’s career choice, as she spent much of her time caring for sick neighbours. When Rebecca was 21 she had moved to Massachusetts, where she worked as a nurse, and eight years later she was admitted to the New England Female Medical College to start her medical degree[iii].

Dr Crumpler graduated a year before the end of the Civil War, after which she worked for an agency created by the US Congress during Reconstruction to provide services to people who had been enslaved, but whom many White physicians refused to see. But, as Cindy Shmerler of the New York Times reports[iv], Dr Crumpler was continuously “ignored, slighted or rendered insignificant, even invisible.” She had a deep knowledge and the lived experience of Black communities and was aware that they were particularly vulnerable and at risk of ill health due to harsh living conditions and no access to preventive care. Yet, because of the intersecting social categories of gender and race, Dr Crumpler was blocked from directly admitting her patients to hospitals and providing services to them as a member of medical staff. She also struggled to get pharmacists to fill her prescriptions and was frequently racially harassed by administrators and fellow doctors.

In 1883, her ‘Book of Medical Discourses’ was published covering the prevention and cure of childhood bowel complaints, and the life and growth of humans. It was dedicated to nurses and mothers, and it focused on maternal and paediatric medical care. This book is now seen as a precursor to prenatal “bibles” for pregnant women. Dr Crumpler was a pioneer for other Black female physicians who followed her steps, and we wish to amplify her achievements.

But Dr Crumpler is not the only Black female who had a profound impact on the medical professional community. Just over a 100 years ago, Henrietta Lacks was born.

Last year in October, a life-size bronze statue of Henrietta Lacks, a Black woman, was unveiled at the University of Bristol by the artist, Helen Wilson Roe and members of Henrietta Lacks’ family to coincide with the 70th anniversary of Henrietta’s untimely death to a particularly aggressive form of cervical cancer.

Henrietta Lacks’ cancer cells were taken for research experiments, at the time, without her or her family’s consent. Labelled ‘HeLa’, her cancer cells had the capacity to survive and reproduce in a laboratory, rendering them immortal and ideal for biological research[v]. Modern medicine would not be the same without Henrietta Lacks’s cells, as they have been used to reach key discoveries in many fields, including cancer, immunology and infectious diseases, and have been vital for advances such as the highly effective HPV vaccine, the polio vaccine, gene mapping, IVF treatment, and more recently vaccines against COVID-19. As Harvard’s Noel Jackson reports[vi] HeLa cells enabled vast amounts of research and more than 100,000 scientific PubMed publications and have led to many Nobel prizes.

But the story of Henrietta Lacks’ contribution to modern medicine brings a heart-breaking reminder of racism and injustice embedded in research and health-care systems. As reported in Nature, her cells were first collected with no consent in the period when few hospitals provided medical care to Black people. What is more, none of the organisations that benefitted provided any reimbursement to her family for the use of her cells. Injustices continued for decades after her death. Henrietta Lacks’ cells were used to develop medical treatments that were not available to all. All of these events have prompted a wider debate about HeLa cells and some have called for a reduction or an end to the use of HeLa cells in research, as the cells were taken without the Lacks’ knowledge or consent.

However, the Lacks’ family want HeLa cells to continue benefitting patients around the world. Henrietta’s grandson Alfred Lacks Carter, told Nature that the most significant thing to remember is that his grandmother’s cells have advanced cancer research, given that she was lost to cancer. They have also helped many people of all ethnicities, and although they were obtained in an unethical way, “they are doing good for the world,” Lacks Carter said.

An editorial in Nature in 2020, reported that scientists and the Lacks family have come together to create revised rules to govern the use of similar cell lines. Last October, WHO Director-General, Dr Tedros Adhanom Ghebreyesus, bestowed Posthumous Award on the Late Henrietta Lacks, an act of historic recognition of her Life, her Legacy and her world-changing contributions to Medical Science. Through the Henrietta Lacks Initiative, the family is now educating future generations on the impact of HeLa cells while advancing health equity and social justice. They collaborate with WHO to eliminate cervical cancer worldwide, and increase COVID-19 vaccination confidence by educating, empowering and mobilising communities. (See hela100.org to find out more).

Henrietta has been described as ‘the mother of modern medicine’ and we are very proud that Henrietta’s statue has been placed on the University of Bristol’s campus outside Royal Fort House. This wonderful art work created by Bristol artist, Helen Wilson-Roe[viii], is the first public statue of a Black woman made by a Black woman to be permanently installed in the UK. 

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[i] https://drexel.edu/legacy-center/blog/overview/2013/june/is-that-dr-rebecca-lee-crumpler-misidentification-copyright-and-pesky-historical-details/

[ii] https://edition.pagesuite.com/popovers/dynamic_article_popover.aspx?artguid=214f9eaf-1c69-463e-ba89-14c9832d231b&appid=1165

[iii] https://cfmedicine.nlm.nih.gov/physicians/biography_73.html

[iv] https://www.nytimes.com/2021/07/16/obituaries/rebecca-lee-crumpler-overlooked.html

[v] https://www.theguardian.com/science/2010/jun/23/henrietta-lacks-cells-medical-advances

[vi] https://sitn.hms.harvard.edu/flash/2020/vessels-for-collective-progress-the-use-of-hela-cells-in-covid-19-research/

[vii] https://www.nature.com/articles/d41586-020-02494-z

[viii] https://www.helenwilsonroe.com/

Further information

The Doctors Blackwell, by Janice Nimura out now in paperback 

Find out more about Elizabeth Blackwell

Learn how we celebrated Elizabeth Blackwell’s bicentenary in 2021

The Biochemist article: HeLa at 70: on honouring the legacy of Henrietta Lacks

Nature editorial – Henrietta Lacks: science must right a historical wrong

Ola Thomson, previous EBI Research Associate in Equality, Diversity and Inclusion, penned an overview on narrative CVs, explaining how they can enable researchers to showcase a broad array of outputs and outcomes from their research beyond published papers.

Research & Development People and Culture strategy paper (published July 2021) released by the Department for Business, Energy & Industrial Strategy expresses commitment to driving adoption of the Résumé for Researchers (or narrative CV) to broaden the range of recognised experiences and accomplishments of researchers. This alternative CV developed by the Royal Society and UKRI, will allow activities beyond publication record and secured grants to be recorded and recognised when evaluating research candidates. The strategy report argues that this “will provide a more rounded picture of an individual’s career, their achievements and overall contribution to R&D. UKRI will be using the Résumé in its processes and will be supporting its use by organisations across the sector.” An example of this new CV, commonly referred to as ‘narrative CV’.  But what is narrative CV and how was the idea born?

The Royal Society organised a series of workshops with research stakeholders as part of their ‘Changing Expectations Programme’ in 2017. One of the outcomes of the report was a recognition that a standardised short format CV was sorely needed to reflect the wider contributions of researchers to the research system. This finding has led to the creation of the ‘Résumé for Researchers’. Funders such as the Dutch Research Council, Science Foundation Ireland, Swiss National Science Foundation, and UKRI have all experimented and adopted this new way of CV writing. It was developed with the help and input of people from across the research system, including the San Francisco Declaration on Research Assessment (DORA).

Narrative CV enables researchers to showcase a broad array of outputs and outcomes from their research, but crucially it allows instilled standards and structure into evaluation processes, where the difficult-to-compare qualitative information can be assessed more consistently across applicants (DORA). But, it is possible to adapt and customise Résumé for Researchers, as it is intended to be a flexible tool to recognise and address a range of different processes that require a summative evaluation of a researcher and specificities of the context in which evaluation takes place.

As with anything new there is some apprehension and concerns about the tendency of some individuals to overstate their achievements, and gender stereotypes creeping in where ‘confidence’ means ‘competence’. On the other hand, traditional CVs are not immune to similar issues. What is important in narrative CVs is that researchers can demonstrate how they have made a contribution to their field, discipline or community, and also to research teams and the development of others. This allows candidates to craft a convincing rationale and present their career paths in a much more intelligible way that builds a comprehensive picture of their working life inside and outside of academia.

The four modules of the CV capture outputs and success measures normally included in a non-narrative research CV (publications, funding, awards), as well as activities focused on research citizenship and community, such as public engagement, training and knowledge exchange. Generation of knowledge, development of individuals, contributions to the wider research community, and contributions to broader society are supported by a personal statement, as well as mentioning career breaks, secondments, volunteering, part-time work, and other relevant experience (including in time spent in different sectors) that might have affected progression of a researcher.

However, this new approach is not without its challenges. For example, it can be difficult to integrate the Résumé with existing highly defined processes. In response to this, the Royal Society amended their grants’ processes to collect a wider range of information, for example through amendments to the guidance notes for the personal statement of the University Research Fellowships (URF) and Dorothy Hodgkin Fellowships.

Moreover, so far there has been no empirical evidence to show whether and how this type of CV influences evaluation processes both for researchers and institutions. The good news is that this knowledge gap is currently being filled by the Lab for Academic Culture at the University of Glasgow, in partnership with Dr Jane Alfred from Catalyst Editorial and UK Reproducibility Network (UKRN), through their three-phase project to provide researchers in the wider research community with an enhanced narrative CV template. Their work focuses on early career researchers (ECR) and exploring the challenges this CV brings:

• uncertainty where to insert what information,
• avoiding redundancy and repetition,
• confidence in how to document and support with good indicators their outputs, contributions and activities, and
• confidence in how to select the types of examples that demonstrate impact, quality, wider contribution to leadership, culture, and practice.

The team released a report in August 2021 on piloting the writing and assessing of narrative CVs with a plethora of useful information, guidance and recommendations for academics, Higher Education Institutions and funders who are encountering or using this type of CV format for the first time, and the issues to consider.

For resources on writing these CVs, including example CVs, you can self-enrol onto a free 25-minute online course by the University of Glasgow and explore all the guidance and practical tips. However, it is worth noting that the key recommendation from the report is that whatever approach is adopted to the format and process for submission and review, a pilot should be undertaken, with a thorough equality impact assessment.

Further information

Listen to an NIHR Dementia Researcher blog with Ola Thomson: How to create a narrative CV

‘Autism is one of my biggest strengths, and my greatest insecurity.’ In this honest and eye-opening blog we hear from an Autistic student at Bristol about what life is like and how having autism at University affects her.

When people hear the word autism, they often think of Sheldon Cooper/Rain Man type characters. I don’t relate to either of them. First off, I’m a female. But also I’m not super smart, I don’t have an amazing memory, and I’m not ‘obviously’ autistic. I can make eye contact, I’m great at sarcasm, and for the most part I’m really good at acting like I fit in, but these things don’t always come naturally to me.

In this piece, I’m going to share some of my experiences, and things I have found both helpful and unhelpful. I want to emphasize, however, that these are my own experiences and reflections. No two people, autistic or otherwise, are the same. My hope is that by sharing this, I may help others to understand autism, and help other autistic students feel less alone, but please keep in mind that I do not speak for every autistic person.

The National Autistic Society defines autism as being “a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.” ¹

2.4% of the UK student population are diagnosed with autism, and less than 40% of these people complete their university education² – meaning that they are 10 times more likely to drop out (60% vs 6.3% overall dropout rate³). To put this into context, the student population of Bristol University was 20,304 for the 2019/20 year⁴. That means 487 students have an autism diagnosis, but only 195 of us will complete our degree courses. That’s not many.

I am determined to be one of the 195. I’ve been incredibly lucky with the support I’ve received from staff at Bristol, but 1.08% of all university graduates being autistic is not good enough.

Autism, masking and fitting in

Autism is significantly under-diagnosed in females, with males being four times more likely to receive the diagnosis⁵. The reasons for this are complicated, but in part females are less likely to be diagnosed due to ‘camouflaging’ or ‘masking’. These terms refer to the ways in which autistic individuals – particularly females⁵ – act like their neurotypical peers⁶. Their autism may therefore not picked up by professionals, family and friends. This underdiagnosis in women can lead to negative consequences such as higher rates of mental illness, possibly as a result of not receiving appropriate support⁷ , and can increase the difficulties faced by women on the spectrum.

I know a lot about masking. It protected me, but was also likely the reason my autism wasn’t identified for so many years (I received my official diagnosis at the age of 19). Masking has helped me to make friends, fly under the radar, and avoid the negative attention you often get for being different. This poses its own difficulties though; I’m not noticed for being different in a bad way, but I’m not noticed for good reasons either. Hiding is a protection, but it also means the good parts of me aren’t seen. I remain completely average, which can feel difficult sometimes. And so, recently, I’ve been trying to take off my mask and show the true ‘me’. Masking is not only exhausting and demoralising, but it means that the world doesn’t get to see all the great things I, and my autism, have to offer.

How does autism affect me at university?

One of the biggest ways in which my autism affects me is my anxiety levels. If the average person has a baseline anxiety level of 1-2 on a 10-point scale, my baseline is generally a 6. That means that if something happens to increase my anxiety levels, instead of going up to a 3-4 like most people would, my anxiety level is already an 8. Because of this, I have a lot of panic attacks. This is especially obvious when it comes to exams; the anxiety of exams becomes so much for me that I would never be able to reach my full potential.

Another difficulty that having autism poses is how I adjust to change. After years of learning to cope, I can deal with change a lot better now than I could in the past, but things still catch me off guard sometimes. Moving house every year, new lecturers every term, and so many other parts of ‘normal’ uni life can pose a difficulty for people with autism. I have to actively spend time preparing myself before a change, and adjusting afterwards.  Some of the situations I find most difficult are ones where I don’t have time to prepare. For example, when one of my lectures changed location midway through term. As soon as that happened – despite attending consistently to that point – I stopped going to the lecture. I didn’t know why, but I felt completely unable to attend; it was like I had a mental block. My brain couldn’t adjust to having the same unit but in a different place without any warning. Reflecting on this has helped me recognise it, and helps stop it happening in the future. However, it would be useful for universities to understand the potential unintended consequences of what must seem like ‘small’ changes to most people.

I’m a very logical and literal person, which means that what makes sense to some people doesn’t always make sense to me (and vice versa!). Someone once said that having autism is asking why there is a needle in the haystack. While I see what others often miss, I can also miss what others see. This can prove particularly difficult when assessments are being explained. I sometimes have questions about things that other people take for granted, and on the few occasions staff have not answered questions I have, my learning can be negatively affected. There have been a minority of lecturers who have refused to give any extra explanations to individual students, and expect everyone to use the same information. While I understand their reasoning that everyone should receive the same information and resources, this can prove a barrier to autistic people (and I’m sure the same goes for other neurodiversities that I don’t have experience with). The image below explains this perfectly.⁸

What has helped?

The most important piece of practical help I have received at uni is around exams. The work of the university disability services, and the support of my school means that I can now be assessed through coursework rather than exams. I find coursework much less anxiety provoking, and it allows me to achieve in ways exams never could. This has made more of a difference than I can explain, and allows me to demonstrate my knowledge in a much more accurate way.

Another thing that has helped has been to have content broken down into smaller sections. This is particularly valuable when I am feeling overwhelmed. My personal tutor, wellbeing advisor, and a couple of other lecturers have really helped me in this regard. Taking the time to sit with me and help me untangle everything has been invaluable, and I am incredibly grateful to the staff members who give their time to help me when I need it.

On the topic of staff, knowing there are people I can go to when I’m having a panic attack or feeling overwhelmed, and who can help me calm down, has been incredibly helpful. The staff in my department have been amazing, not only with helping me in the moment, but also in helping me learn to manage my anxieties. Regular contact with my personal tutor has made a world of difference, as has having ‘safe’ people. If you can be the safe person for someone on the spectrum, I guarantee you will make more of a difference than you could ever understand. As a result of the amazing staff members I’ve come into contact with, I’ve learnt to be a lot better at reaching out when I need help, and that it’s okay to express my needs. There have been some great people at university who have helped me learn to recognize and express when I need extra help, and that is a skill I will take with me through my whole life.

Finally, having advance notice about anything out of the ordinary is incredibly helpful. By allowing me the extra time to process things before they happen, I am able to cope with them a lot better. This can range from things such as having a different lecturer, a different location, or what the content of the lecture will be. Referring to the previous example of when a lecture changed venue, this may have been easier if it had been emailed to us the week before, or if someone checked in with me beforehand to acknowledge the change, as this would help break down the mental block.

Having lectures available 24 hours before the live session is also helpful as I can have a chance to look through and process it so I’m more able to take it in during the lecture. This is available to everyone from most lecturers, but having slides beforehand is very valuable and it would be beneficial if all lecturers ensured this was the case.

What hasn’t helped?

I’m always very cautious who I tell about my diagnosis. I worry about the impact it could have on my future, that people may treat me differently, or that I will be seen in the light of stigma. One of the strangest things I’ve experienced is people sharing their opinions of autism with me once I’ve told them about my diagnosis. I once had someone tell me that they didn’t agree with the premise of diagnosing autism, as it can create a self-fulfilling prophecy and make people act “more autistic.” That isn’t necessarily wrong, as I probably do act “more autistic” since receiving my diagnosis, but that isn’t because of a self-fulfilling prophecy; it’s simply because I actively try not to hide those parts of myself anymore.

Similarly, I was once in a lecture on children with disabilities, and the lecturer set us the task of having a conversation to identify all the potentially difficult things about having a student with autism in the classroom, or of being friends with someone who is autistic. They of course didn’t know that I was on the spectrum – very few people do – but hearing what people were saying was hurtful. The emphasis on all the negatives of autism really outshone the many amazing things about it. I found the courage to speak to the lecturer afterwards and explain why I found it hurtful, but there may be other autistic students who have to listen to these things without being able to express themselves, and that can be incredibly damaging. Please always be mindful of the fact that you don’t know all of your students or peers’ experiences; what you’re saying could be hurting the people around you even if you don’t realise it.

What would I like people to know?

There are lots of great things about being autistic. I’m really passionate about the things that matter to me, I love learning new things, and when I’m allowed to be myself I’m apparently very funny (if people’s reactions to the things I say are to be believed!). But more than anything, I’m a very accepting person. I know what it feels like to be different and to be excluded, so I try my hardest to show people they can be themselves around me.

Autism is my way of being. I don’t know how to experience the world without autism, and so much of my energy goes into navigating a neurotypical world. When I was diagnosed, the psychologist compared being autistic to being left-handed. There isn’t anything inherently wrong with it, but the world just isn’t set out to be accessible to us. I work around it for the most part; I’ve spent 20 years of my life learning to pass as neurotypical, and I’m very good at coping now, but there are still times when it can make things more difficult.

If you are autistic and are coming to university, I want you to know that it is possible. You can be yourself and find your people, you can get the support you need (as long as you let people know) and you CAN be one of the 1.08%. Hopefully one day we can raise that number, but for now if you are one of the 195 at University of Bristol, know that you are amazing and worthy and an absolute badass for finding your way in a neurotypical world!

IMAGE CREDIT: ANGUS MAGUIRE // INTERACTION INSTITUTE FOR SOCIAL CHANGE

Further information

Charlotte Amelia Poe’s spoken word piece about anxiety and growing up with undiagnosed autism

A PDF exploring links between autism and mental health

National Autistic Society

Autistica

Bristol Autism Spectrum Service (BASS)

University of Bristol Disability Services

References:

1. https://www.mentalfloss.com/article/625404/equity-vs-equality-what-is-the-difference

2. https://www.autism.org.uk/about/what-is.aspx

3. https://link.springer.com/content/pdf/10.1007/s10803-018-3741-4.pdf

4. https://www.whatuni.com/advice/news/universities-with-highest-and-lowest-dropout-rates/85809/

5. http://www.bristol.ac.uk/ssio/statistics/

6. https://journals.sagepub.com/doi/pdf/10.1177/1362361316672178

7. https://journals.sagepub.com/doi/pdf/10.1177/1362361316671012 Lai et. Al 2017

8. https://www.autism.org.uk/get-involved/media-centre/news/2016-07-24-autism-and-mental-health.aspx ; https://www.autistica.org.uk/downloads/files/Autistica-Action-Briefing-Adult-Mental-Health.pdf