This post was written by Ian Lowenhoff, Trial Manager for the NHS-Galleri Trial within the Cancer Prevention Trials Unit (CPTU). Ian manages and supports operational aspects of the trial, focusing on communication with trial participants and stakeholders. He also supports the clinical delivery team.
Ian qualified as a registered nurse after graduating from the University of Surrey. Before joining the CPTU, he worked as a nurse in acute medicine, public health and primary care where he delivered various research studies. Ian is a member of the ACCESS King’s committee and co-lead for neurodiversity for staff and students at King’s College London.
We had the pleasure of hearing from Ian for Neurodiversity Celebration Week 2023. Ian has dyspraxia, which gives him a more unique, or ‘atypical’, set of working strengths and weaknesses. He shared with us a richer insight on neurodiversity, his experiences working with the Cancer Prevention Group, and the power of effective workplace support.
Can you give a little more information about neurodiversity?
Neurodiversity describes the natural variation in people’s ways of thinking, learning and processing, and behaviours. While ‘neurotypical’ forms are most common, or ‘standard’, neurodiversity includes a range of different processing styles. Example conditions include autism, dyslexia, ADHD and dyspraxia.
At the heart of neurodiversity is the idea of differences, rather than deficits. The neurodiversity movement has roots in the Autism Rights movement, and the wider Disability Rights movement. Neurodiversity, in contrast to typicality, was coined as a term by sociologist Judy Singer in 1998. Following this, autistic activist Kassiane Asasumasu introduced the term ‘neurodivergent’, for anyone neurologically different from typical. In Asasumasu’s own words, “it is specifically a tool of inclusion.”
How does this intersect with the work environment? What are common workplace challenges for neurodivergent people?
At least one in ten working adults are neurodivergent. However, there are multiple forms of everyday exclusion that neurodivergent individuals experience in the workplace and across working culture. These typically include stigma, limited awareness and a lack of appropriate infrastructure. Unfortunately, this results in many employers overlooking the working conditions necessary for people with different neurotypes, often creating barriers to working successfully.
Infrastructural limitations can include:
- Office layout (organised structures provide familiarity and predictability, making any transitions or change easier to navigate)
- Team and staffing structures (unclear roles and responsibilities can bring excessive stress and anxiety, leaving individuals unable to focus on their specific workload)
- Chaotic and noisy work environments (overstimulation can often lead to sensory overload, leaving neurodivergent workers unable to work at all)
Very commonly, such conditions can act as outright barriers to inclusion in the workplace.
What are other challenges faced by neurodivergent individuals?
A huge challenge facing neurodivergent people are the prevailing attitudes and myths surrounding neurodiversity. Most of these are to the detriment – both to wellbeing and performance – of neurodivergent individuals.
“Neurodiversity isn’t real”
Despite this widely-held belief, we now have neuroimaging technology that provides objective evidence of neurodiversity. Studies using MRI scanning have shown that brain functioning in neurodivergent individuals varies from that of ‘standard’ neurotypes. These differences have been studied in extensive detail.
“Neurodivergent conditions are rare in females”
It is a persistent myth that certain conditions, such as dyspraxia or autism, do not arise (or are exceptionally rare) in females. In fact, many thousands of females are diagnosed or assessed as having these conditions every year.
Such views are often based on stereotypes, and they ignore the fact that neurodivergent workers often develop extremely fine-tuned strategies to conceal or ‘mask’ their conditions, in order to fit in unnoticed. Masking is a phenomenon whereby neurodivergent people conceal their natural characteristics, to adhere to expected social norms.
In the workplace, the persistence of stereotypes (and the effects of masking) can leave neurodivergent staff isolated, exhausted and subject to poor mental health.
Are there any rights or protective measures in place for neurodivergent workers?
Neurodiversity rights have come a long way over the past two decades. The UK’s Equality Act 2010 provides legal protection for neurodivergent people in the workplace, requiring reasonable adjustments to be made by law. Employers that dismiss or ignore a disclosure on the basis of prejudice or stereotypes are likely to be acting unlawfully.
Can you tell us about some of your experiences specific to your dyspraxia?
Dyspraxia is not immune to common misconceptions surrounding neurodiversity.
“You can’t be dyspraxic because you successfully complete manual tasks”
There are endless variations to this also applied to other neurodivergent conditions. A worker can’t be dyslexic because they can spell, for example; someone can’t have ADHD because they aren’t observed as being hyperactive.
Dyspraxic people may encounter the following issues day to day:
- Difficulties with fine and/or gross motor activities (often presenting challenges for activities that involve handwriting and some manual tasks)
- Trouble processing sensory information (resulting in difficulty planning and carrying out new motor actions)
- Problems with organisation and working memory
Dyspraxia can present further challenges in the workplace. While these vary from person to person, I commonly experience:
- Difficulty processing information at speed
- Difficulty in task organisation
- Short-term memory loss
- Difficulty with dexterity (affecting my ability to perform fine motor skill actions, including carrying a cup of tea without spilling it!)
- Experiencing mind block when trying to begin tasks
I also experience shaking due to poor motor skills. This often leads people to think I am nervous, but this is not the case.
What about strengths that your dyspraxia brings?
Persistence, determination and an extremely hard-working nature are all characteristics associated with dyspraxia. These arise in response to the resilience necessary for dyspraxic (and neurodivergent) individuals to operate in the constraints of a neurotypical world. Unfortunately, they are commonly overlooked.
However, with the right working conditions – and support in obtaining these – neurodivergent people can thrive. Neurodivergent individuals often make extremely strong contributions to their workplace, when they are supported effectively. There are countless examples of exceptional neurodivergent pioneers, inventors and innovators: these have all had the right working conditions to make fully capitalising on their unique strengths possible.
Furthermore, in some organisations, workplace adjustments for neurodivergent individuals have led to new ways of working for the wider team, which has led to greater work output and efficiency.
In joining the Cancer Prevention Group, I have been supported by my line manager and colleagues. My specific needs and challenges have been properly considered and, as a result, I have been provided with equipment to support my needs and enhance my productivity. I am also allowed extra time to carry out tasks, and have the use of additional software to help with meetings and note-taking. Very importantly, I have been accepted for who I am, which has had a very positive impact on my life.
How could the clinical trial workforce (and clinical trials more generally) be made more neuroinclusive for the future?
Education can go a long way. Making researchers and those working in the research environment aware of the range of neurodiverse conditions, and of accompanying strengths (along with challenges), will help to create more inclusion and acceptance. Listening to neurodivergent colleagues themselves can also make a great deal of difference.
For research itself, involving and collaborating with neurodivergent people – from the earliest stages of a study – will naturally enrich the knowledge, views and experiences shaping the research. This has great potential for increasing intervention acceptability and better improving outcomes in the longer term.
Ultimately, this can help to harness the many strengths of neurodivergent employees, research participants and research collaborators. It will help clinical trials to capitalise on the unique contributions they have to offer.