Autism and 'the double empathy problem'

Autism has previously been understood as a disorder in which individuals present 'social deficits' which include lacking empathy and theory of mind, in other words, autistic people struggle to understand and connect with allistic people along with the unwritten rules of communicating. However, I would argue that this idea is largely misunderstood. 'The double empathy problem' critiques the idea that autism is defined as a 'theory of mind' deficit and instead proposes that we re-frame this issue of disconnect between autistic and allistic people as a problem with 'reciprocity and mutuality' (Milton, 2012). In other words, fostering understanding is a two-way street, and it's not us that aren't trying...

Tone indicators and key terms for this post:

• /disgen = disingenuous, I am writing satirically from the perspective of which I am actually critiquing

• /m = metaphorically speaking

• Allistic = people who are not autistic. Allisitc people can be neurodivergent in other ways, for example, they may have ADHD, dyslexia, etc, but they are not autistic

• Theory of mind = a theory which poses that autistic people are less able than allistic people to understand others and that autistic people's lack of 'theory of mind' is the reason they struggle socially (Chown, 2014)

• The double empathy problem = a problem with communicating and empathizing in social interactions between two different kinds of people. The problem is experienced on both ends, hence it being ‘double' (Milton, 2012)

Autistic people accommodate allistic people all the time. We sacrifice our true personality, interests, comfort and coping strategies for our emotional well-being, all to make sure they don't feel uncomfortable by our 'otherness'. The medical approach to disability (see this post for more details) has set the tone within society that my social difficulties are my problem, my 'deficit', and therefore society is not expected to meet me halfway, allistic people are not expected to accommodate us in social interactions or otherwise.

Autistic people are capable of understanding allistic people perfectly fine because we have no choice other than to learn! Despite having naturally different styles of communicating, generally speaking, autistic people are adept at putting on an allistic mask, stepping into the shoes of their allistic peers and learning to do things their way. Allistic people, on the other hand, are not expected to do the same for us autistics (Milton, 2012). Why should they need to adjust anything, right? We are the weirdos, not them! /disgen. Even though the strengths of autistic communication include directness, clarity and efficiency, all of which allistic people (to generalise, of course) are not so strong at. Furthermore, autistic people are also great at communicating with each other (Chown, 2014), so it seems that autistic people actually have great theory of mind.

Could it be argued then that it is actually allistic people who struggle to understand us and not the other way around? Perhaps this 'social deficit' actually lies within our predominantly allistic society that refuses to learn to understand autistic people, despite autistic people making an effort to fit in. This question is at the heart of 'The double empathy problem'. Of course, there are struggles that come with being an autistic person that may not be alleviated by societal change and accommodations- for example, regardless of accommodations that are put in place for me, I will still get overstimulated by the sun! This being said, a large part of what disables us autistic folk I would argue is societal failures to accommodate, which exacerbates our experiences with autism, particularly social ones.

Long before I was diagnosed with my autism as a teenager, I was well aware of my shortcomings when it came to understanding people. I would often get confused, and when I thought I understood it was later revealed that I completely misunderstood, either someone's words, intentions, instructions, hints, jokes... I can struggle to pick up on sarcasm, social cues, banter, or people who beat around the bush and dance around what they are actually trying to say /m. Metaphors I can handle though :)

I have learned that it is weird that I have intense interests and obsessive hobbies, and it's annoying when I talk about them a lot, so I keep them private now. I also learned that it is rude to ask questions if they are a bit random, so I stay curious. It is also weird to start conversations simply about what is on your mind, it is better to start conversations with boring questions that have been asked a million times and people are surely sick of. The script I have on autopilot is a chore that kills any chance of me actually feeling connected with anyone, but it is also necessary for me to be accepted. I really do not want to have to do these meaningless repetitive warm-up routines with people in hopes that it will lead to a point in which we can talk about what is actually on our minds and connect. It's like the 'customer service persona' except I don't work in customer service, I am just autistic and try very hard to make small talk seem natural for me when I hate it. It makes me feel lonely. I will never accept that this is something allistics don't feel too.

Of course, the small talk is only part of it, if I want to communicate with allistic people as an autistic person effectively, I must do other things that make me uncomfortable like making eye contact and smiling because it makes the allistic person feel like they have your attention. It does the opposite for me, focusing on someone's face whilst they are talking to me distracts me completely from what they are saying, and I end up not registering anything that is being said to me, but if I don't do it, they think I am being rude by not listening to them, so I look them in the eye, I smile and nod so that they feel heard, and I leave the conversation not having a clue. You cannot stim or fidget because you will freak them out and they will think you are too weird to talk to in the first place, or that you are bored of them when all you are really trying to do is self-soothe and regulate so that you can pay attention and not get overwhelmed. The list goes on indefinitely, for me at least, and each autistic person is different.

We learn how to read allistic people, learn how to guess how they are feeling and what they are thinking, and we do it well. On the other hand, when allistic people try to read us, they get it completely wrong!(Milton, 2012) Have you ever had an allistic person try to give you a big hug when you are very clearly overstimulated by your environment, thinking that it would help? They think we are sad and need affection to comfort us when really the last thing we need at this moment is to be touched! Or have you ever had someone accuse you of being on drugs when you are actually just a person who is easily awe-struck and intrigued? Maybe worst of all, have you ever been labelled as someone with anger issues, when you're not an angry person at all, or someone who is too passionate, maybe too apathetic, and put on medication that wasn't right for you?

Allistic people cannot read us, they have never been expected to learn how to because they are the majority, and we are the minority (Chown, 2014). They mistake our overwhelm for sadness or being grumpy, our excitement for anger and our curiosity for rudeness and 'challenging' them. They mistake our joy for intoxication, and our authenticity for sarcasm or lying, and so on. We are used to this, we can anticipate it, and so we suppress our natural emotions and expressions, and instead learn to be how they are, and do what they do, so that they can understand us.

The problem in empathy between us is not a singular problem located within autistic people, it is a 'disjuncture' between two different types of people, and it seems to be allistic people that have the most struggle because for them it is an unusual interaction with us, however, for us, it is common and so we tend to show up to these interactions prepared with what we have learned (Milton, 2012). This is all well and dandy for allistic people, because for them, they might leave the interaction a little bit confused, unsure about us, but ultimately walk away thinking 'It's ok, that person was just a bit weird, I was being fine', whereas, for the other autistic person, they will have increased anxiety of being misunderstood, and will assume the misunderstanding was their fault, resulting in lower-self esteem (Milton, 2018).

Constantly having to walk on eggshells, monitor our facial expressions, natural reactions, posture, and even the way our voice sounds let alone the words we use for allistic people is very bad for autistic mental health. It means that we constantly have to wear a mask and conceal what we are really like for the comfort of, most of the time, strangers, and it doesn't even work! We are still seen as too weird and they still don't like us. Sadly, many autistic people also must do this for the people they are close to as well. Surely one would think that we owe it to our loved ones to be authentic and to give them the opportunity to know the real us.

Allistic people may not know where to start when it comes to learning how to understand autistic people, but I think the key is simply asking and refraining from judgment. Most of the time, if I am being myself, people will just see me as too odd and therefore not worth getting to know. Imagine if instead of allistic people being so quick to have negative feelings about us because we are different, they simply asked about whatever it is they find curious about us, and created an opportunity to foster some level of understanding. Eventually, they would learn that along with different shapes, sizes and colours, people can come in different neurotypes, and that us being different doesn't mean there isn't potential for friendship there. Instead of assuming we all think the same and getting offended when we don't, they could just ask for our point of view. Or if they see that we are upset and distressed, ask 'How can I help?', or consider that they might not be able to and leave us alone, instead of assuming.

If you are allistic reading this, perhaps there are things you could learn about how to accommodate different neurotypes in your communication skills. We don't lack empathy or theory of mind, we actually accommodate you all the time! The problem here lies in reciprocity, and allistic people tend to be lacking, not us.

Sources

Chown, N. (2014) 'More on the ontological status of autism and double empathy' [Online]. Abingdon: Routledge. Available from: Taylor & Francis Online: https://doi.org/10.1080/09687599.2014.949625 pp. 1672-1673 [Accessed 10 September 2023].

Milton, D. (2012) 'On the ontological status of autism: the double empathy problem' [Online]. Abingdon: Routledge. Available from: Taylor & Francis Online: https://www.tandfonline.com/doi/abs/10.1080/09687599.2012.710008 p. 884 [Accessed 10 September 2023].

Milton, D.; Heasman, B.; Sheppard, E. (2018) 'Double empathy' [Online]. Encyclopaedia of autism spectrum disorders. Available from: Kent Academic Repository: https://doi.org/10.1007/978-1-4614-6435-8_102273-1 pp.1-3 [Accessed 21 November 2023].