Flo Neville is an autistic PhD candidate at the University of the West of England, exploring autistic peoples’ needs for the time and space to just be themselves. Her Masters dissertation Autistics, Autodidacts and Autonomy was the inspiration for Autism HWB, a health and wellbeing website by and for autistic people. She lives with her husband, teenage daughters, dog and cat in a village in the South West of England. This week she discussed the autistic health resource portal she manages and her research on how late-diagnosed autistic women manage their own health and wellbeing.
Tell me about your website Autism, Health and Wellbeing. Why did you start it and who is your audience?
Many autistic people, myself included, find that conventional health and wellbeing advice isn’t always helpful for us. Generic advice like “join an exercise class” or “phone a friend” doesn’t consider our different needs and experiences. Some autistic people benefit from exercise classes or phoning friends, but more often we need very different strategies. Some of us find relief through unconventional diet or movement practices, some of us need to be in nature a lot, some of us thrive with regular time away from other people and some of us see measurable benefits from fully immersing ourselves in something we find really interesting.
As individuals, we need to discover our own strategies. We can learn ways to feel happier and healthier from being taught by someone else, but researching, developing and practising strategies for ourselves is sometimes more effective. This way we can feel for ourselves what works and what doesn’t. So, Autism HWB is a health and wellbeing website made by and for autistic people to celebrate:
- Autodidacts – people who teach themselves
- Autonomy – being able to make decisions for ourselves
- Autistic Authorship – valuing the individual’s autistic experience over “expert opinion.”
Who writes for the website? Can anybody contribute?
Anybody who is autistic is welcome to contribute a post about a strategy they use. So far we have published posts on strategies such as running, playing an instrument, stim dancing, mindfulness, having routines, and finding time to do nothing. But we are looking forward to reading about other strategies too, maybe somebody might like to tell us about how coding, Lego, hill-climbing, knitting, or birdwatching has been helpful for their health or wellbeing. Or maybe learning about trains, or reading everything there is to know about linguistics, or collecting Marvel figures, or sewing a complete wardrobe of clothes, or carving spoons or staring into space, or studying space, or spinning or lining things up. I imagine the list is pretty endless! The site is run by a team of autistic people who have a range of expertise in health, wellbeing and advocacy. We are happy to help contributors plan posts, or we can even create posts from a short video interview with the contributor.
How did you first become aware of your autistic identity?
I hadn’t ever considered that I might be autistic until my early 40s when I read a blog post written by an autistic woman which really resonated with me. I was lucky enough to be assessed soon after, and then, through reading blogs by other women who had been diagnosed around the same time, I quickly became part of a small but welcoming community. It was an intense but validating time as we all figured out our new identities and learnt to understand our life experiences within an autistic context. Many Autism HWB writers and readers have said that the blog feed helps them feel validated too, and I think that’s really important.
Your Master’s dissertation explored how late-diagnosed autistic women manage their own health and wellbeing, particularly in terms of nutrition and movement strategies undertaken. What role should health professionals play in helping autistic people manage their health?
For a few years before I undertook that study, I had been a health and nutrition coach. My non-autistic clients often signed up for clear, quick and decisive advice. But my autistic clients often had many of the answers they needed already. When they hadn’t received helpful support from other professionals, they had researched alternative health avenues. Not just googling their symptoms or reading a few books, but taking formal courses, following PubMed references and creating spreadsheets from the meticulous notes they made on their own symptoms. These clients mostly just needed validation and gentle support in moving forward with what they already knew. When I enrolled on a health and wellbeing Masters in Research, I decided to base my dissertation project around what late-diagnosed autistic women had found helpful.
The autistic women I interviewed each had a particular interest in, and experience of managing multiple conditions such as frequent fatigue and overload, anxiety, burnout, sleep problems, digestive problems and chronic pain. I was primarily interested in the health practices they had developed through deep research, formal education, trial and error. But also, they described places that they needed to retreat to such as natural spaces or rooms where they had control over the sensory environment. And they all talked about how creativity and stimming were vital for their mental health. I think that many health professionals could learn a lot from listening to what autistic people say they need!
Are there any core health principles people should consider in order to lead a well-balanced, healthy life?
I think that there may be two core health principles for everyone – (1) listen to yourself and (2) trust yourself. But these principles are often difficult for autistic people to follow because often other people do not listen to them or trust them. Take stimming as an example. Many professionals consider that stimming is anti-social, shows a lack of self-control, and risks chances of getting on in life. But autistic people could tell them that using repetitive movements or actions can increase feelings of joy, filter out distressing sensory stimuli and relieve emotional distress. Similarly, spending lots of time alone is often judged by others to be a warning sign for depression or a measure of deviant behaviour. But for many autistic people this time alone is absolutely vital for their wellbeing. Time alone can be used to restore frayed nerves from lots of socialising and difficult sensory environments.
So maybe those core health principles for autistic people are equally important for the other people in an autistic person’s life to understand. I am sure that the readers of your blog already appreciate this! They know that listening to their autistic loved ones, colleagues and clients (however they choose to communicate), and trusting them to decide what they need is an important step in helping them to feel healthy and happy.
Connect with Flo
Personal twitter: https://twitter.com/FloNevilleNAT
AutismHWB twitter: https://twitter.com/AutismHwb