The double empathy problem in support services for autistic people with high support needs: a UK-based ethnographic study
Abstract
Recent study of the double empathy problem (DEP) in autism research has found that nonautistic people can struggle to understand autistic people, and vice versa. However, this research has exclusively focused on autistic people with lower support needs (LSN). We wanted to know if and how the DEP applies between autistic people with higher support needs (HSN) and the practitioners supporting them in support services. The study took place in the UK, in 2022-2024, in two day-support services for autistic adults with HSN. We used ethnographic methods, which included participant observation; interviewing of practitioners/supported people; analysing documents from the services; and reflexive practice from the ethnographer, HEAS, who is autistic. We used grounded theory as our analytic approach. Supported people had specific communicative difficulties, but staff sometimes struggled to understand supported people due to neuronormative expectations. Staff perceptions of risk could also cause misunderstandings, due to increased interactional stress. Staff often felt responsible for “not understanding” supported people. Supported people often seemed frustrated at being misunderstood, and used strategies to accommodate staff’s difficulties understanding them. Despite these difficulties, practitioners and supported people could have positive social interactions, good communication, and close friendships. The DEP is useful for understanding autistic people with HSN’s experiences in a support setting. Cross-neurotype communication can be difficult; despite this, however, cross-neurotype friendships flourished. This suggests that focusing on mutual cross-neurotype understanding could help improve care provision and outcomes for autistic people with HSN, though more research is needed.
