Guest blog post from Florence Neville, PhD student. Blog post originally appeared on autismhwb.com:
Summary of study findings. Florence Neville, February 2022
I am an autistic Health and Wellbeing PhD student at the University of the West of England, and I am exploring the need for autistic people to have alone-time (if you like, you can read a bit more about me here).
Alone-time for autistic people isn’t really talked about in academia, but I know it’s vital for my wellbeing, and lots of my autistic friends feel the same way. So I want to explore what alone-time means for other autistic people. For this research I define alone-time as time when:
- you are by yourself and won’t be interrupted by other people
- you are in a space that you feel comfortable in
- you are able to choose what you do in this time and space
My PhD research is to find out how and where autistic adults choose to spend time alone, and what they feel the benefits are of alone-time. Last year I interviewed autistic adults and later this year I will run a survey. Then I can use my research findings to tell other people why alone-time is important and necessary for many of us.
Last summer I interviewed sixteen autistic adults based in the UK. Some of my participants chose to be interviewed over a video link, and some chose to be interviewed by text. Everyone had a preparation sheet to fill in a few weeks before the interview which gave them an idea of what kind of questions I would be asking. This meant there were no big surprises on the day for them, or for me!
I have a wonderful community advisory group of other autistic adults – Dr. Ruth Moyse, Michelle Parsons and Katy Benson – they helped me design the preparation sheet and the interview questions.
When I analysed what my participants had told me in the interviews, I identified four themes. These themes tell a kind of story, describing how social environments often overwhelm autistic people, and how alone-time is important to recover from that overwhelm. Obviously, these four themes can’t exactly describe everyone’s experiences, but they do give some context to why alone-time is so important for many autistic people.
Once I’ve finished my research and written it up for my PhD thesis, I will look at publishing my findings in detail, but for now I hope you find this short summary helpful and interesting!
1. Reacting to Social and Sensory Overwhelm
My participants were often overwhelmed by social input, sensory input and needing to mask.
Social input could be verbal or non-verbal communication. Social input wasn’t always a problem, but difficult, intense or long periods of being in a social space was often physically and emotionally distressing.
Sensory input included distracting sounds, bright lighting and uncomfortable temperatures. Some sensory input was distracting or even painful. In social spaces it was harder to control sensory input.
Masking meant behaving in ways that made non-autistic people feel more comfortable. It included (1) performing being engaged or switched on, (2) performing different social roles or personas, (3) making small talk, and (4) stopping themselves from stimming.
Juggling social input, sensory input and masking often made my participants feel exhausted and overwhelmed, even if it was with people that they loved. At first they might feel distracted, but then they might feel irritable or frustrated. Eventually overwhelm might feel like internal pressure about to explode or a traffic jam of processing. Overwhelm might cause a meltdown or a shutdown.
Overwhelm might also cause discomfort, pain, confusion, difficulties with speech, not being able to focus and not being able to do everyday tasks.
2. Retreating from Social and Sensory Distraction
It was very important to have safe-spaces to retreat to – away from social input and negative sensory input. Safe spaces helped in recovery from overwhelm. Locking the door and turning off the phone was often a big relief. A safe space could be a quiet room at home, or a quiet outdoor space. These spaces meant different things to different people.
Safe indoor spaces could be (1) clear, minimalist spaces, (2) spaces where the temperature, light, sounds and smells were controllable, (3) cosy spaces, (4) interesting spaces, and (5) spaces set up for preferred activities.
Safe outdoor spaces provided happiness, safety and inspiration. Natural spaces away from other people were often (1) places to feel less inhibited, (2) places with sensory input that felt good, and (3) spaces to think clearly.
Sometimes waking up early or going to bed after everyone else was the only way to get time alone, even though it meant missing out on sleep.
3. Regulating, Recovering and Recharging
Being immersed (really involved) in an activity helped in recovery from overwhelm, and helped to ‘recharge batteries.’ Immersion was enjoyable, relaxing and rewarding. Some participants called this being in flow-state. Sometimes people could only get into flow-state if they had already spent time in a safe-space.
The immersive activities that my participants liked, included making music, hiking, researching, gardening, bike maintenance, diving, crafting and gaming. Time spent in immersive activities was sometimes helpful for processing thoughts and emotions that had built up during the day, or it might provide a break from processing worrying and anxious thoughts.
Focussing on the details was often a way to feel immersed in a particular time and space. This could be photographing visual details and editing the photos, or recording sounds. Both nature and street photography were popular. Being behind a camera also reduced the chances of having to interact with other people.
Fictional worlds often felt safer, easier and more comfortably predictable than real-world environments. Reading familiar books multiple times, or watching familiar films or televised series helped to relieve stress.
4. Ready to Reconnect with Others
Often my participants wanted to be sociable, to reconnect with other people after some time apart. But it was difficult to be sociable if they were overwhelmed or exhausted and hadn’t had a chance to recover or ‘recharge their batteries.’ It was important to feel rested and calm and to have enough energy before going into social spaces. Some people made timetables to balance out socialising and alone-time so that they didn’t get overwhelmed.
The Covid-19 lockdowns had often been very difficult for (1) people who lived alone and enjoyed seeing other people during the work day and (2) people who were used to being at home alone during the day but then had their family home all day. Both groups lost the autonomy to balance time with others and time alone.
When my participants felt ready to reconnect with other people they were more likely to enjoy social events (1) in small groups, (2) based around a shared interest, or (3) with other neurodivergent people (such as other autistic people, ADHDers etc.).
Socialising based around an activity (like walking, making music, going to music gigs, crafting or watching films) meant less pressure to mask. Activity based social events also attracted other neurodivergent people who had more understanding of sensory sensitivities. This kind of socialising was less overwhelming than being in other types of social environment.
Over to you! If you are autistic and would like to share your Retreat, Regulation or Reconnection strategies with other autistic people on this community website, please contact us here!
If you are an autistic adult based in the UK and would like to take part in my survey later this year, please follow me on Twitter where I will be asking for participants.