The double empathy problem: why communication with Autistic people is mutual
By Helen Edgar and David Gray-Hammond · From the Re-Storying Autism workbook, Module 1
Non-Autistic communication styles dominate society; this can cause families to internalise the idea that Autistic people are the ones who struggle and should change the way they communicate. The communication differences between Autistic and non-Autistic people are mutual and reciprocal; there is often a mismatch of communication styles and understanding, not a deficit based on how Autistic people communicate. The double empathy problem (Milton, 2012) explains that: Autistic people empathise and communicate richly and effectively with other Autistic people, and many Autistic people describe themselves as hyper-empathetic.
Non-Autistic people empathise and communicate easily with each other. The difficulty arises between the two groups because they interpret the world differently and have different lived experiences. An Autistic person can only experience the world and relationships around them through the lens of being Autistic. The same is true of a non-Autistic person who can never have experience of an Autistic person’s world. The double empathy problem arises when people of two different neurocognitive styles lack a shared reference point within each other's experiences. We can understand and empathise with each other from a theoretical perspective, but we can not bridge the divide between our fundamentally different experiences. This may help to explain why your Autistic child may struggle to make their feelings understood, or why direct questions are sometimes met with silence, alongside other differences, such as may be alexithymia or PDA. Understanding the double empathy problem helps to realise that the mismatch and gap in communication can be reframed as cultural communication differences, not clinical deficits. Once families begin to adopt this lens, the entire emotional landscape can become easier to navigate, and we can begin to let go of some of the frustrations we may have as parents/ carers, especially if not Autistic ourselves. The goal changes from perhaps “making them communicate normally” but learning to share a language together and collaboratively. To support your Autistic person, they may benefit from you:
- Providing visual supports
- Using fewer words
- Noticing their nonverbal expressions
- Communicating side-by-side rather than face-to-face
- Allowing autonomy over when and how they communicate
- Exploring Alternative and Augmentative Communication (AAC) - eg using text or devices instead of having to rely on speech
Keep going in the course
This is a short extract. The full lesson in Module 1: Understanding Autistic Experience includes the video teaching, the rest of the workbook text, reflection questions for parents, carers and Autistic people, and progress tracking.