It has been years since Damian Milton rocked the world with the paper: On the ontological status of autism: the ‘double empathy problem.’ In Damian’s paper, the double empathy problem was defined as:
A disjuncture in reciprocity between two differently disposed social actors which becomes more marked the wider the disjuncture in dispositional perceptions of the lifeworld – perceived as a breach in the ‘natural attitude’ of what constitutes ‘social reality’ for ‘neuro-typical’ people and yet an everyday and often traumatic experience for ‘autistic people.’
What does that mean in more simple language?
I will explain in this month’s video (which can be found HERE on YouTube).
Transcript below (at bottom of page).
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NOTES/DISCLAIMER: It’s important that we all understand that, as Autistic People, there is not a unified autistic experience. We all have different opinions and very different experiences, and I think it’s great to share those things.
If you’re a NeuroTypical watching, remember that this is just my experience as a NeuroDivergent Person. I encourage you to listen to and read as many Autistic experiences as possible to best understand Autistic and other NeuroDivergent People.
Hopefully, this video will inspire other NeuroDivergent People to share their experiences and how they relate, and maybe even do not, in the comments below.
I would LOVE to see more Autism vlogs by #ActuallyAutistic People.
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This post is based on a Substack post published on September 19, 2023.
Paid Substack, Patreon, and YouTube members had access to this video on Friday, April 12, 2024 (one week early). The video’s public release will be Friday, April 19, 2024
Transcript:
Lyric Rivera: Hey everyone Lyric here.
I am author of the best-selling business ethics book. Workplace Neurodiversity Rising.
Today I wanted to talk about The Double Empathy Problem and the myth, and misunderstanding, around Autistic empathy.
This video is based on a Substack post, that was released to my paid subscribers on September 19th, 2023.
It has been years since Damian Milton rocked the world with his paper “On the Orthological Status of Autism, the Double Empathy P roblem.”
In Damien’s paper, The Double Empathy Problem was defined as: “A disjunction in reciprocity between two differently disposed social actors, which becomes more marked in the wider disjuncture and disproportional perceptions of the life world, perceived as a breach in the natural attitude of what constitutes social reality for neuro-typical people, and yet an everyday, and often traumatic experience, for Autistic People. dot.. dot.. dot.. “
So, what does that mean, in more simplified language, because that is a lot of academic jargon?
If you would like to know more, please stay tuned.
Music Plays:,
Our society has an unfortunate habit of pigeonholing, Autistic, and other NeuroDivergent People, when we don’t fall in line with the predetermined, neurotypically defined and driven, social norms, because we are, literally, wired differently from our neuro-typical counterparts.
We socialize, and communicate, differently, because we literally experience the world differently than non-autistics do, but, this is often pathologized, and we are seen as the problem when confusion occurs.
The myth that Autistic People are cold, unempathetic, and unemotional, comes in part from The Double Empathy Problem. It is not that Autistic People do not feel empathy, but that non-autistic people present, and interpret, empathy differently than Autistic People do.
The truth is about Autistic empathy is, just like with non-autistic empathy, our empathy can occur along a spectrum. We can have really intense, overwhelming empathy, that we don’t know how to handle, or we may have very little empathy, for those around us.
Every person, experiences empathy differently, and, likewise, will express their empathy differently- and that’s okay. There is not one way to experience, or express empathy, that is more correct than any other way. There are just different ways of expressing and experiencing empathy, that are more accepted, and approved.
Additionally, it can be hard to empathize with experiences and needs, that you don’t personally have, or understand, regardless of one’s NeuroType. This is where The Double Empathy Problem, and the confusion between cross-NeuroType-communication, can cause problems.
With Autistic People, especially, because our communication differences can fall far outside what’s considered normative, or average, this has led to our way of communicating and experiencing the world being pathologized, instead of respected, supported, and accepted.
I, personally, find it much easier to communicate with other Autistic People, who know they’re Autistic.
With Autistic People, who are self-aware of their Autistic brains, there is a lot more compassion, a lot of times, and understanding for things, like my directness, and the scattered nature of my thoughts. There’s also a patience and kindness when I take something literally, miss a joke, or get a word wrong, or if I need clarification on something, or if I am struggling to find words for something.
Other Autistic People are often willing to stretch to meet me where I am, and I am also eager to meet them where they are.
As Autistic People, we are often used to stretching ourselves, to communicate with people who are unwilling to stretch themselves, to communicate with us.
In communicating with other Autistic People, especially those who know they’re Autistic, I am not forced to stretch myself nearly as far as if I am communicating with someone who is non-autistic, or doesn’t understand Autism and Autistic People.
I can’t help, but think about how ironic it is that Autistic People have a diagnosed communication disability, however, we are the ones forced to accommodate everyone else, by making our communication more adapt to everyone else’s communication.
We’re doing all the flexing, and they say we’re in- flexible, but a lot of people aren’t even willing to help meet us, and help accommodate us.
We are the ones adapting our communication, so that non-autistic people can understand us, but shouldn’t it be the other way around?
Could we at least, please, start meeting each other in the middle?
Communication comes in two parts.
There is outgoing communication and there’s ingoing communication. That’s regardless of how the message is sent, whether it’s messages we type, or we speak, or messages we read, or we hear. There are a lot of ways one can take in, and disperse, information.
When two people communicate with each other, both the sender and the receiver are responsible for coming to a common understanding about the information. However, when one of those people in the conversation is Autistic, or NeuroDivergent, a lot of times we have an unfair amount of blame, and pressure, put on us to make sure misunderstandings aren’t happening, instead of there being some equality, in taking responsibility for miscommunications that can happen.
I like to use the metaphor that this is similar to when two people decide to come together and engage in activities that could potentially produce offspring. That means both of those people are responsible for said offspring.
Communication is really similar. Two people come together and they swap ideas (or fluids) and both are responsible for what comes out at the end.
Unfortunately, this isn’t always true with cross-NeuroType-communication.
This disparity is seen in the deficits based descriptions we have of Autistic thought and descriptions of Autistic communication, and other parts of just Autistic experience, that we have with our global medical systems, and our heavily medicalized pathologized descriptions of Autism and Autistic People.
Speaking to non-autistics can be like speaking to someone who is from another country, and they have different customs, and traditions, and dialects, and ideas of what is acceptable.
I often find myself on eggshells, when talking to non-autistic people, because my bluntness, my tone, my posture, sometimes even the way I move my body, can really unease people, if I’m not careful.
I sometimes won’t even realize that I’m putting people off.
It’s hard because I sometimes don’t know what I’m going to do or say that’s going to be offensive, or that was offensive to someone, and a lot of people won’t take the time to say, “Hey, you said something that was not cool,” they’ll just silently disappear out of my life, or go talk about me behind my back, instead of helping me understand that I’ve done some kind of faux pas, I didn’t understand.
When I misunderstood, I’m always expected to stretch myself, to fill that void in the person I’m speaking to is understanding, and they won’t give me that same grace, a lot of the time, that I am required to extend constantly- constantly overextending myself.
Seriously, who says, my way, who says the Autistic way, is wrong?
Like, why does the Autistic way have to be wrong?
Why does the non-autistic way have to be the right way? Just because there are more non-artistic people in our world? I’m going to call BS on that.
It’s also thought, by some people, that Autistic People lack theory of mind. I, personally, disagree with that.
Let me explain theory of mind, for those of you who are new, is this ability to attribute mental states to oneself and others, and also understanding that other people have beliefs, desires, intentions, perspectives, that are different from one’s own.
Which I, fully, as an Autism person, understand that people have different beliefs, perceptions, and experiences of the world that are different from my own.
So if we want to do myth-busting, Myth busted -right there.
I’m an Autism person and I have a theory of mind. What theory of mind does is it helps us in our understanding of other people, how they experienced the world, and how our actions will be perceived by others.
I’m reasonably good at understanding other Autistic People, and how they are going to perceive my actions and thoughts. However, I do struggle to know how non-autistic people are going to interpret and perceive me, as they struggle to understand how Autistic People are going to understand and interpret their actions.
You see, you see where I’m going here?
We both struggle to interpret, and understand, each other.
We are both having problems understanding each other.
Or as Dr. Damian Milton said: “differences in neurology may well produce differences in sociality, but not as social deficit, as compared to an idealized normative view of social reality.”
Non-autistic people are, equally, as bad at understanding Autistic People, as they say, Autistic People are at understanding non-autistic people.
Honestly, because so many of us, Autistic People, are expected to do extra work to understand non-autistic people all around us, I would argue that many of us are better at understanding, non-autistic people, then non-autistic people are at understanding Autistic People.
We are expected to learn to decode, and interpret, non-autistic language, body, language, communication things.
At the same time, non-autistic people simply don’t have the same pressure to comprehend how Autistic People communicate. There’s very little incentive for them to do so, unless they happen to know, work with, or have an Autistic person in their life, that they personally care about.
10 years after the original Double Empathy paper was released an updated version, with a few new thoughts on The Double Empathy Problem, called: “The Double Empathy Problem, 10 Years On” was released.
In this more recent piece, it is theorized that, ” while there is much work to be done to explore these issues across multiple disciplines, the concept of double empathy has the potential to aid in a reframing of Autism itself, from a social communication disorder, to description of a broad range of developmental differences, and embodied experiences, and how they play out in specific social, and cultural, contexts.
Additionally, because of how widely accepted The Double Empathy Problem has become, this theory could lead to radical change in the current diagnostic criteria for Autism.
What, what a diagnostic criteria look like, if Autistic People weren’t defined only by our deficits, or how we fail to measure up when compared to nonAutistic People?
What would our world look like if people understood, and empathize with, Autistic people?
Though times in the world are changing, this is not a reality I expect to see in my lifetime. Though it is one that I do hope future generations will, one day, experience.
One day I hope the world will know, and understand, how Autistic People experienced the world, and our emotions, differently from non-autistic people.
One day I hope that our differences won’t be seen as wrong, or something that needs to be corrected.
One day, I truly believe that non-autistic people will no longer be the standard by which other people are measured, but that day is a long ways away.
What is critical about Damien Milton’s Double Empathy Problem, is that it challenges our societies view, that Autistic People lack a theory of mind.
Our empathy is no less valid, heartfelt, or compassionate than non-autistic empathy is.
Autistic empathy is, simply, not appreciated, because it is misunderstood, because it doesn’t look like non-autistic empathy, which needs to change.
I grew up, falsely, believing I was broken, cold, and lacking empathy, because my expressions of my emotions, differed from that of people around me.
Turns out, now that I understand myself, and the human empathy spectrum, and the different kinds of empathy, that I have a lot of empathy, that often can be so intense it can flow out of me in unintended ways, or cause me to shut down entirely- which can give me a cold unempathetic look, to those who don’t know what is happening beneath the surface.
When the world is too much, I shut down. I can, temporarily, become disconnected from my feelings, and everything.
I freeze, and the world stops, or I implode inward on myself.
The pause is only a temporary reaction to an enormous emotional event.
Because my emotions don’t always come out and immediately, this can give me a cold, emotionless, composed appearance, to those who are viewing me from the outside, but eventually many of my emotions come out, on a delay. Often that means they come out with enormous amounts of force, when they do come out.
It’s not that I don’t feel. I, actually, feel a lot, and I struggle to contain those feelings sometimes, shutting down, or lashing out, when the feelings do eventually burst free, is not something that is accepted in the world today, even if I can’t help when my emotions do take me to these very two extremes, but one day it might be.
All right, that’s it. Those are my thoughts on The Double Empathy Problem.
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This video was shot on Monday, May 13th, 2024, and will be available to my Patreon, Substack, and Facebook, and YouTube paid subscribers, early.
I’m not sure what the public release for this video will be. It’ll probably be about a week after the paid subscriber release, once it is finalized.
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You make this vlog , blog, whatever this is, possible- so thank you.
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I hope you all have a great one.
I will talk to you next month. Bye.
Outro music rolls…
