Have you seen that awesome TEDx talk by Jac den Houting? I’ll just leave it right here for you…
Jac talks about two pieces of academic work that I really wanted to know more about:
1) the ‘double empathy problem’ and
2) the ‘telephone game’ research.
It was a mildly-challenging feat, but I tracked down links for both pieces. You can find the double empathy problem here and the telephone game here if you’d like to read them for yourself.
The Double Empathy Problem
Also known as “On the ontological status of autism: the ‘double empathy problem’”
“both autistic and neurotypical people have deficits when interacting with each other”
The ‘double empathy problem’ is a reframing of autism as just another variant of humanity; whereas now autism is classified as ‘abnormal’ and ‘pathological’ as compared to the neurotypical majority (if you want more detail on common terms in the used in neurodiversity, check out this post). The author, Damian Milton, points out that this may originate in the idea that groups have a tendency to other those who are different, often in order to avoid confronting problematic behavior and biases within themselves or the group culture and instead placing the blame for discomfort upon the othered individual. He points out that autistic people in particular deviate from the majority, and are often deemed things like ‘weird’, ‘disordered’, and ‘incomprehensible’ in their motivations and behaviors. He challenges the diagnostic criteria of autism as primarily deficits, instead proposing that both autistic and neurotypical people have deficits when interacting with each other (check this link for the DSM-5’s Autism Spectrum Disorder diagnostic criteria).
“The ‘double empathy problem’ is a reframing of autism as just another variant of humanity; whereas now autism is classified as ‘abnormal’ and ‘pathological’ as compared to the neurotypical majority”
The double empathy problem itself describes a disconnect between two individuals trying to relate and communicate, a gap that grows wider as backgrounds, experiences, and perspectives become more and more different.
Milton explains that people have a certain expectation for a person’s behaviors and attitudes in a social setting, and neurotypical and autistic people may have totally different social expectations.
Many social actions that neurotypical people consider harmless and acceptable may be uncomfortable, or even traumatic, for autistic individuals. There can be a potentially huge disconnect in social expectations between two people.
As a note, I’m going to call the ability to understand another’s social expectations ‘social empathy’ for the purposes of this article. So disregard any other meaning the phrase social empathy might have to you for the duration of this article, and know that I’m talking about ‘the ability to understand another person’s social expectations in social situations’.
“Milton describes this disconnect in social empathy as a double problem because the deficit in ability to communicate is on both sides of the conversation. Both parties lack social empathy for the other. Autistic and neurotypical people alike struggle to understand each other.”
Often the responsibility to close this gap falls on the autistic person. This could be for a huge number of reasons: maybe because autistic people are often trained to conform, mask and tailor their interaction to neurotypical standards with therapies like ABA, or maybe because autistic people may interact with neurotypical people on a regular basis, thus ‘learning the language’. But many neurotypical people don’t have much interaction with autistic individuals – simply because the majority of people fall into the ‘neurotypical’ category we’ve created and fewer in the ‘autistic’ category (though the autism prevalence rate may be as high as 1 in 50 children ). No matter the reason, the point is the same: both groups struggle in the ability to understand and communicate with each other, especially without practice interacting with the other group.
I believe this idea could happily be applied to other differences under the neurodivergent umbrella as well. Maybe even humanity as a whole. People tend to get along better with others that are similar to them, with similar backgrounds, interests, or experiences, as well as people they interact with regularly. But we often struggle to understand those different from us or hidden from us. Almost straightforward, isn’t it?
The paper for the double empathy problem also discusses and criticizes issues with how we talk about autism, other autistic traits classified as deficits, implications, and how changing this dialogue could positively impact the lives of many autistic and neurotypical individuals. Unfortunately, for the scope of this article, I must save those discussions for another day.
The Telephone Game Research
Officially known as ‘Efficiency and Interaction during Information Transfer between Autistic and Neurotypical People’
On to the second piece of work, the telephone game. This research turned out to be not a paper, but a very new poster presentation at the 2019 International Society for Autism Research (INSAR) conference. This means the dataset they’re studying was collected recently – November 2018, in fact, barely a year old at the time I wrote this article. But it also means this dataset hasn’t been fully analyzed, written up and published yet. Overall it’s good news: we have a paper to look out for, and they’re sharing an interesting portion of their findings so far!
Anyway, according to the INSAR website’s record of this presentation, the authors, Catherine Crompton and Sue Fletcher-Watson, drew on ideas from the double empathy problem. They wanted to test if social cognition is truly impaired in autistic individuals compared to neurotypical individuals. In order to examine this, they set up three groups – one group of all autistic individuals, one group of all neurotypical individuals, and a mixed group of autistic and neurotypical individuals.
An illustrated example of how the groups worked: https://twitter.com/cjcrompton/status/1161292630795403264?s=20
These groups then played telephone (or as research calls it, conducted a ‘diffusion chain’) – a researcher gave one person in each group a story to repeat to one other person from their group, who would then repeat the story to the next person, and so on. The autistic-neurotypical group received and retold the story every other neurotype (e.g., one autistic person, one neurotypical person, etc.). From what I can tell, they had 2-3 trials per group type, so the data was collected on two or three ‘diffusion chains’ (or telephone game rounds) per group. They had 8 participants per chain, and they recorded the conversations for examination later.
A cute tweet showing what a diffusion chain is: https://twitter.com/cjcrompton/status/1161293699613188096?s=20
The stories given to participants by researchers had been pre-coded with 30 specific details that they would track as the stories were passed along. The results are preliminary, and eventually need to be further validated – but I found them exciting. Basically what happened: the entirely autistic and entirely neurotypical groups lost details at about the same rate as the story passed from participant to participant. The mixed autistic and neurotypical group lost details at a faster rate, especially at the beginning, if we look at the chart below. It is worth noting that all group averages appear to end up around 5-6 details recalled by the 8th and final retelling. It does not appear that any statistical ‘significant differences’ were reported on the INSAR’s summary. This more or less means I’m not sure if we can say this result is most likely not due to chance and not is so close as to be considered statistically the same.
“At a glance, this finding does seem to support the idea that autistic individuals aren’t necessarily impaired in social communication. There does seem to be a disconnect between how neurotypical and autistic individuals communicate with those in the other neurotype, while both groups communicate similarly within their own neurotype.”
In the worst case (no statistical differences between groups), this research might be saying that we’re not all that (statistically) different!
The telephone game research is still in production, and I’m not sure what other support is out there for the double empathy problem – though I am looking (the INSAR conferences have some lovely work). I would suggest a future direction for the telephone game – nonverbal autistic people, who can often communicate with a keyboard of some sort, were not involved in the study (so far as I can tell). Trying to replicate this work while incorporating written and spoken communication with both verbal and nonverbal participants would be a great addition.
The authors of the telephone game research also plan on studying the social empathy and rapport between storytelling pairs and exploring differences in scores between pairs in each of the chains with the videos they collected. I look forward to sharing the article I hope is making its way to publication.
Overall, the double empathy problem makes sense to me as an autistic adult. This and other work I’ve been reading excites me. I personally believe that solutions to our communication differences will more likely come from working together to bridge these gaps – rather than pathologizing a group for being different.
“Lastly, I feel the need to point out that all of this isn’t to say that being autistic isn’t disabling, challenging and sometimes a huge impairment. It is. But I also think there’s some impairment on both sides, and that’s worth acknowledging and working to improve.
What do you think?
Whether you’re specifically autistic, generally neurodivergent or neurotypical – what do you think about this disconnect in social empathy? What benefits and flaws do you see in reframing autism in this way? Let’s discuss any questions and these ideas in the comments below!
Sullivan is an autistic yoga teacher & researcher striving to share more coping tools (such as yoga & meditation) and research (like this article) with the neurodivergent community and beyond. Blending her background in psychology and mental health with yoga, Sullivan strives to share the peace, self-acceptance, and physical awareness yoga and mindfulness has brought her. Sullivan also has a background in psych and market research, and is now using these skills as the resident researcher at Planet Neurodivergent.
Milton, Damian (2012) On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27 (6). pp. 883-887. ISSN 0968-7599. (doi:10.1080/09687599.2012.710008)
Crompton, C. J., and Fletcher-Watson, S. (2019, May). Efficiency and Interaction during Information Transfer between Autistic and Neurotypical People. Poster presented at the International Society of Autism Research Conference. Montreal, Québec, Canada.
Blumberg, S. J., Bramlett, M. D., Kogan, M. D., Schieve, L. A., Jones, J. R., & Lu, M. C. (2013). Changes in prevalence of parent-reported autism spectrum disorder in school-aged U.S. children: 2007 to 2011–2012. National Health Statistics Reports, 65, 1–11.
DSM-5’s Diagnostic Criteria for ASD
Discussion about this post