What did we learn in the first three months of @isbelonging?

Mirabel Pelton, June 2020

1. People seem to like the question: ‘what does social belonging actually mean?’

In November 2019 I pondered the results of our research: our statistics suggested the way we think about an absence of fulfilled social needs may not be meaningful to autistic people.  This wasn’t a surprise; the autistic people we work with had told us this months before.  Our results were interesting: it suggested some aspects of social belonging were similar between autistic and non-autistic people but there were differences in how we recognize this in each other.  So, we wanted to ask what do we actually mean when we talk about social belonging? 

Before we start new research, we try to listen to what really matters to people.  This is the aim of the @isbelonging project.  It was simple: visit community groups, discuss social belonging and ask people to complete a postcard with a phrase or drawing about what’s important to them, share an object, a photo, poem or anything else they would like.  Just try to be safe and to be positive!  We wanted to capture what’s important to individuals.  People seem to like this idea.  We liked the simplicity and positive focus.  The local groups liked the discussion and the ‘real life’ focus.  The funders (Coventry City of Culture) liked it and the ethics committee liked it.  In March 2020 we were given ethical approval to go ahead… but then …

2. It was a strange time to ask about social belonging and connectedness…

… the end of March 2020 COVID-19 brought a seismic change to the ways we connect with others.   Lock down meant the loss of familiar people and places of school or work, formal social structures – groups and clubs – and informal structures.  Maybe, we all need structure and identity, a role and purpose?  We gained new ways to use IT to connect with family and colleagues, learned that services, such as health and education, can be provided remotely without the need to travel to face-to-face appointments (reasonable adjustments that autistic people have been requesting for years).  Maybe some of us prefer this way of connecting? We had to work out what it meant to each of us as individuals. 

At the start of lock down we paused – was it ethical to ask about belonging when so many of us were worrying about social isolation?  We wanted to provide a positive focus, but what could we do?  It was impossible to visit local community groups for the face-to-face discussions I had been looking forward to.  As with all problems in autism research, talk over your challenges with autistic people and they will point the way forwards.  So, we organized our first virtual meeting of our design group … and despite technical hitches …

3. Is social belonging feeling part of something?

.. we discussed our ideas about belonging and what to do about the project.  We talked about feeling part of something, of society and the human race.  We talked about ‘finding our tribe’ – a group of people who experience the world as we do, where we feel accepted.  We discussed pets and nature (naturally, our pets introduced themselves during the video call!) and having a cat ‘who will like me for who I am’.  We discussed the importance of being confident that others truly value you, will listen to you and liking and accepting yourself.  This included ‘not being normalized’ and having a good relationship with yourself.  Some of the artworks submitted highlight art as a means of self-expression without compromising who you are.  These experiences may be similar in autistic and non-autistic people but some reflect the unique challenges faced by autistic adults.   

We organized a twitter poll to see how widely these views were held.  Most people (around half) felt that feeling accepted in a group was most important but people also valued relationships with family and friends, nature and pets and feeling a part of society.  We may have multiple identities that impact or threaten our sense of belonging, such as being a carer, which create difficulties for physical friendships.  Twitter and online communities can provide opportunity to overcome physical barriers, connect with neurodivergent communities and boost mental health.  Art can provide a way to connect with individuals on a joint project.  We heard about the need to improve understanding of internal autistic experiences to improve acceptance and bring down barriers in society that autistic people experience.  No one should be excluded simply for being who they are. 

What next?

We hope in our small way that we can contribute to improved mental health and wellbeing.  We have taken our first steps to explore what exactly we mean by social belonging, whether this is similar in autistic and non-autistic people and how we may encourage mutual understanding.  We will be asking more questions over the coming months and you will be able to read about them here.  In the meanwhile, please do share your comments and thoughts on our research.  We want as many views as possible!