Gemma is an autistic Early Career Researcher based at the Centre of Resilience for Social Justice, University of Brighton and a Boingboing volunteer. Last year she completed her PhD in Linguistics PhD in the School of Humanities at the same institution. She is currently working on an Economic and Social Research Council (ESRC) funded Postdoctoral Fellowship under Prof. Angie Hart’s mentorship. Here Gemma talks about her PhD research, and what she plans to do over the coming year of her fellowship…
My PhD Research
For my PhD in Linguistics (the study of languages), I looked at communication between autistic and non-autistic speakers. I had a special interest in studying this as, being autistic myself, I knew from first-hand experience just how tricky these kinds of interactions can sometimes be.
Autistic people often experience difficulties with social communication. Being able to understand others socially and to make yourself understood is a really important part of most areas of life. Difficulties with social communication can affect all sorts of things like: making friends, work-life, studying, and accessing health and social care. They can often also lead to mental health problems.
In the past, academic researchers would talk about autistic impairments in social communication: they used to believe that autistic people weren’t able to communicate very well in that way. But now we understand much better that this isn’t really a very fair way of seeing things. Difficulties in communication that can happen between autistic and non-autistic speakers are the responsibility of non-autistic people just as much as autistic people because communication is a two-way street. My PhD work explored this, and thought about why these communication breakdowns might be happening.
“Difficulties in communication that can happen between autistic and non-autistic speakers are the responsibility of non-autistic people just as much as autistic people because communication is a two-way street.”
What I found
How I did it
I had a lot of fun collecting the data for my research. I worked with a local group called Assert Brighton and Hove (who support autistic adults in the local area) to host a small community engagement project called Talking Together. Autistic and non-autistic people were invited to come and have short (10 minute) conversations about the topic of loneliness. They were invited to talk about their own experiences of loneliness and what they thought about the problem in loneliness in Brighton and Hove. Everyone really enjoyed themselves despite the challenging topic. Many of us started out as strangers but we had tears and hugs and laughter along with our biscuits and tea in our sharing at the end of the project.
The main thing I noticed was the big difference between the conversations between two autistic people, compared to the conversations between autistic and non-autistic people. In a conversation, good flow means it feels easy for the conversation to bounce back and forth well. The conversations between autistic people – even when they were strangers to one another – had really good flow. In the other conversations – where autistic and non-autistic people were talking – there was often much less flow. Even if the autistic person and the non-autistic person knew each other really well, there was still less flow and positive interaction. There were lots of other interesting findings… check back in a few months and watch our animated videos (see below) to learn more!
My fellowship work
My PhD research was in Linguistics, but I’m shifting over for this ESRC Postdoctoral Fellowship to learn more about Social Policy. Social Policy is concerned with how society meets people’s human needs around things like education, work, health and wellbeing.
Often it can feel like research just ends up in a library somewhere and forgotten, or published in an expensive journal that means not everybody can read it easily. I want to become the kind of researcher who can help affect change in the real world, so Social Policy seemed like a really good place to begin!
To help my learning, I’ve been really lucky so far to have the chance to join the Westminster Commission on Autism where I was able to sit in on an inquiry into people’s experiences of receiving an autism diagnosis and ask some questions. I’ve also joined the National Development Team for Inclusion as an Associate where I’ve learned a lot about working with the NHS, and where we recently published a report with recommendations for autism-friendly sensory-environments in CAMHS (Children and Adolescent Mental Health Service) inpatient hospitals
My current fellowship has three mini-projects planned that I’m going to split my time between. The focus across all three of them is to share my findings as widely as possible, because I feel it’s really important that as a society we have a better understanding of communicating well with people who may think or speak differently to us. It helps everybody, and makes society more inclusive.
Mini project 1) Coproduced animated videos
For the first mini-project I’m collaborating with an amazing local community art group, Figment Arts. Figment Arts support learning disabled, autistic and neurodiverse artists in the local area. I’ve partnered up with four incredible autistic artists and we are working together to develop a series of short, animated videos inspired by my PhD research.
There will be one ‘explainer’ video: telling people about the Talking Together project and sharing some of the findings in an accessible way. We’re working on this first one together. Each of the artists will then also be making their own video in their own style, responding to the main ideas of the research and looking at themes like communication difficulties between autistic and non-autistic people, autistic communication styles and loneliness.
One of the things I’m most excited about in this mini-project is the collaboration. We’ve only recently started but it’s been so much fun bouncing ideas off one another and seeing some of the initial ideas come to life. I’m so impressed by the artists’ talents and creative vision! The artists are also learning new transferable skills, like working with stop-motion animation software and sound effects recording which they can use in their future works.
Mini project 2) Policy guidance
For the second mini-project I’ll be working with a group of stakeholders (i.e. people the research is relevant for) to develop some co-produced guidance for healthcare staff around good communication between autistic and non-autistic people. I’m still in the process of planning how this group will work – but get in touch through my email address at the end of this blog if you’re interested in taking part!
We will be a mix of different people: including autistic people with recent experience of healthcare settings, autistic healthcare professionals and non-autistic healthcare practitioners and policy influencers. We will work together over a series of meetings throughout 2022 to come up with a set of guidelines that can hopefully inform policy and practice for healthcare settings.
This mini-project is the one I am most nervous about! It’s a new area for me, learning about social policy and healthcare practice and there’s lots to get my head around, but I feel like I’m in the right place to do that, and surrounded by a really great team. I’m also a bit nervous because it feels so important. Autistic people, as well as disabled people more broadly, experience a lot of health inequalities that have only been made worse since the pandemic. Social communication barriers contribute to these inequalities, so if we can improve understanding between autistic and non-autistic people in these healthcare settings, we can make some real improvements to autistic people’s quality of life.
Mini project 3) Writing a book
For the final mini-project (not quite so mini!) I’ll be working on writing a book. I actually really enjoy writing so it should be fun, and I’m looking forward to learning about the process of getting a book together. The book will take the ideas and learning from my PhD research and share it in a way that lots of different people will be able to understand.
The book will have a social justice agenda, focused on helping non-autistic people understand more about being autistic, and how we can all contribute to good communication when we’re talking with people who might see the world differently or think differently to us. There will be a section about communication between autistic and non-autistic people in health and social care settings, and a section focusing on intersectional issues ( e.g. things like autism in the context of BAME identities, different genders and with learning disabilities).
The book will be for anyone, but I am imagining that it will be interesting for autistic people, their friends and family members, people interested in language, and people working in education, health and social care settings with autistic individuals.
Wish me luck! There’s a lot that I need to learn, and a lot I have planned to do this year but I couldn’t have found a better place to do it, or nice people to be working with. I’ll be sharing updates on the Boingboing blog, as well as through my Twitter page. You can find me there as @DjzemaLouiz.
