Monthly Autism Reading Group (March 2022) – The double empathy problem

In this month’s reading group, we focused on the ‘Double Empathy Problem’. We were joined by a range of people with a diverse range of experiences and backgrounds.

We provided some interesting readings for people to take a look at beforehand:

• Double empathy, explained | Spectrum News 
• Revealing the Double Empathy Problem

We started with a parent sharing the joy of hearing a different perspective accepting that society as a whole needs to make accommodations and change their communication, not just the autistic person. We all agreed that it is a good step in moving away from a deficit model of autism where all the problem is put on the autistic person. We agreed that communication is two-way interaction: both participants have a role in making a conversation work.

Crompton’s recent work (2020) found that the communication between a group of autistic people is just as effective as communication between a group of neurotypical people. One person cited the example of being the person who doesn’t get the joke – it’s an interesting experience when you’re the neurotypical person in a room of autistic people who all understand what’s going on, but you don’t.  Another member raised how powerful it is to see non-verbal students interacting with each other: they may still be fully engaged but without spoken words.

How does double empathy change what research questions we ask?

Approaching research from a positive viewpoint means looking at strengths and differences, and being open-minded about what we want to achieve in an interaction. Devyn Glass of the Chatlab recent PhD work looks at research on how autistic children synchronise their movements when interacting. Nearly all previous research approached the question by comparing a neurotypical pair and an autistic-neurotypical pair.  But why not also compare 2 autistic people in a pair? The deficit had automatically been implied in the autistic person. Devyn’s current work shows some remarkable synchrony between pairs of autistic children. Double empathy helps us think about how to ask the right questions. That’s helped by participatory research and inclusion of autistic researchers.

What are the implications of double empathy for how we design spaces and manage services?

When designing spaces and managing services we agreed autistic voices are very important. One member shared a great example of upgrading a calm room at their school. They thought they were giving students a better space, but students were not using it. When asked, the students listed several difficulties, such as in lighting. Highlighting just how important autistic voices are.

Reducing anxiety was another crucial factor raised. Anxiety can result in people not being able to speak or contribute. We need to be adapting the physical and sensory environment. We should also be having open and honest conversations where we agree social rules – are we going to have eye contact? do they want small talk? – it’s important to ask questions and make it a two-way decision process as interactions are always two ways.

How can therapies be adapted to accommodate the double empathy problem?

A Speech and Language Therapist shared how previously they taught children to imitate neurotypical communication, but in light of the double empathy problem, they have been taking steps to change this. That involves redefining aims, accepting that a conversation is two-way and neurotypical listeners can adapt to the way autistic children speak, as well as vice versa.

How does the double empathy problem change how we train and educate people about autism?

Sometimes staff working with autistic people may have just half a day of training. Autism is so diverse, and no autistic person is the same. We felt there was a conundrum: how do you train people about autism, but also convey just how different each autistic person is? One answer is to have a whole suitcase of strategies to try. One person made a great analogy: it takes years to fully learn another language, mannerisms so it will take time for someone to fully learn someone else’s communication preferences. It’s a challenge that an approach that works well with one autistic person can be very negative for another. Teachers need confidence to try a strategy but also to reflect and switch to something else if it’s not working.

We also spoke about how autism is taught in the Psychology A-level curriculum, often from a Theory of Mind perspective, not addressing double empathy. That deficit approach and lack of awareness can be very undermining for any autistic student of psychology.

Focusing on the positives?

Generally, education and care plans tend to focus on deficits and support needs. It would be good to have more focus on building on a person’s strengths. One great way to do this is through a Digital Stories approach pioneered by AcornSoton. The Sussex ‘Our Stories’ project is working with autistic children and their families for them to create personal stories about the child’s strengths, interests and experiences. So far they are proving a really powerful way for families to present a different perspective based on their own experiences.

Found this interesting? Want to join our next meeting? Email: acorns@sussex.ac.uk to join the mailing list.