Developing a Phenomenology of Autism

This chapter outlines new methods with which to understand an autistic ‘phenomenology’ which is representative of the diversity of autistic people. A neurodiverse research team works in co-production. Diverse autistic (and some comparator non-autistic) individuals undertake individual interviews using Interpretative Phenomenological Analysis, to understand their experiences at depth. Themes are in parallel explored at breadth using a citizen science digital platform, allowing contributions on experience from a wide range of autistic (and some non-autistic) people. Further methods to reach those with different (often non-verbal) expressive ability use innovative participatory practices including immersive multisensory environments, with neuroscience tools capturing engagement, attention and response. This interdisciplinary method allows identification of common elements of experiences, including those with complex communication needs or intellectual disabilities. It empirically generates for the first time a shared, autistic phenomenology—with benefits, including: (i) shared understanding through mutual empathy and common language between professionals and the autistic community; (ii) new foci for scientific research through aspects of autistic experience previously neglected; (iii) added richness and utility for clinical phenotyping and diagnostic definitions; and (iv) helping identify new care pathways and supportive innovations for health care and education.