Autistic sensory experiences, in our own words
I’m a big fan of research with people rather than on, to or for people and this is about a project that is just that, with people
In 2018 I began working with researchers at the University of Reading, Dr Teresa Tavassoli and Keren MacLennan (PhD student) on a project that we devised together. As sensory researchers, Teresa and Keren were interested in exploring what is termed in research as ‘sensory reactivity’ which is in the diagnostic criteria for autism and means how much and how someone reacts to the sensory environment. For each autistic person, this is different but can happen across the many ‘domains’ or senses that we have. Someone might be hyper-reactive or very reactive to bright lights which can feel painful to look at and they might show that through facial expressions or movement, while someone else might be hypo-reactive or not very reactive so they don’t have as much of a visible or internal reaction. Another way an autistic person might react to the sensory world around them is to seek out sensory input like smooth textures, moving visual patterns or music that they enjoy. Together Keren, Teresa and I realised that autistic people have so many different experiences of what the sensory world is like and all the hidden connections between sensations but that these aren’t well captured or understood in research. Where autistic experiences of the sensory world are explored in research it is often from an outside-in perspective, the views of autistic people about their sensory experiences are underrepresented in research but overwhelming in autistic anecdotes.
To centre autistic voices in sensory research, we began to devise some research questions and ways of asking autistic people about their sensory experiences in a way that is accessible to them. We reached out to autistic people outside of our core team to check that what we were asking made sense and integrated their feedback into the research design. Once amended the online survey gave autistic people the opportunity to define their sensory experiences across both the senses and their ‘reactivity’ (hyper, hypo and seeking) by answering questions with open-ended questions and multiple-choice options.
Once data collection finished Keren took on most of the analysis and continued to check back with our core team to see if these codes and themes were right. Using content analysis (analysing the words and ideas that were present in people’s responses) and thematic analysis (generating themes from recurring topics in the responses) a greater understanding of the true diversity of sensory experiences was created. The analysis shaped and reshaped itself through the discussions of the core team until we had some consensus on the topics that were strongly coming through in the research. Once we had something 'presentable' we worked with a panel of autistic adults to check the themes and their obvious interconnectedness.
The interconnectedness between sensory input, emotions, energy level, ongoing task and how you manage everything you have to do alongside coping with sometimes overwhelming sensory input is an experience that many autistic people are familiar with. Understanding just how much the sensory world can impact how anxious you feel, how well you can communicate, how able to do a food shop or even just enter a space is an important piece of understanding to build up. Without this understanding, from the perspective of autistic people, many may not understand how all-consuming the sensory environment can be for some and for others it is a way of being able to interact that releases anxiety and tension. Interacting with the sensory world through sensory seeking behaviours is strongly associated with stimming (self-stimulatory behaviour that helps self-regulation) which is often a really positive (as long as no one is getting hurt) way of expression that can encompass happiness, anxiety, distress and so much more.
Having this full circle experience of creating research with autistic people and checking the analysis made sense to autistic people (there were some significant changes based on this interconnectedness point) means that this isn’t research just for or about people but with autistic people. The research could have been conducted without involving a single autistic person in the process, only as participants, but that would have (in my opinion anyway) weakened the research from the questions through to the analysis. With autistic people involved you get research that is much more impactful to the community it serves, we are able to represent our own experiences, in our own words, through our own perceptions to reflect more accurately what the sensory world is really like.
Finally, this all created an autistic informed model of sensory reactivity, with our inferences embedded. Even more importantly all of the interesting bits of what autistic people have to say about the sensory world can be accessed in the pre-print. Open access and available to the community it impacts: https://psyarxiv.com/3nk7a
