Ep. 011 | The Double Empathy Problem

Today, we chat with returning guest, Yana Ramos, a music therapist, as they share about how the popular perception of autism creates the double empathy problem.

LEARN MORE

The Double Empathy Problem by Dr. Damian Milton | Online Article

Empathy is Overrated by Devon Price | Online Article

In My Language by Mel Baggs | YouTube Video

TRANSCRIPT

Erica: Welcome, friends! You’re listening to The Feeling is Musical — as presented by the Snohomish County Music Project. My name is Erica Lee, and today we are talking about: The Double Empathy Problem, with music therapist, Yana Ramos, as the third episode of our 4-part celebration of Autism Acceptance month.

For those of you who have not yet met Yana, they are a music therapist with Snohomish County Music Project, who practices disability affirming therapy with families and individuals. Yana is passionate about amplifying the lived experience of marginalized communities, especially those who are neurodivergent and disabled. During their clinical internship, Yana developed a program for strengthening positive attachment and child-facilitated communication among neurodiverse families. In their free time, Yana enjoys reading, creating, advocating, and cuddling with their service dog, Greta, who is also on the therapy team at the Music Project as quote unquote resident cutie.

[Podcast intro music plays]

Hi friends, just a brief message from Yana before we get started.

Yana: Thanks, Erica. I just want to note that in this episode and consequent episodes, I will be using the term autistic - autistic person, autistic folks. I personally use capital A Autistic for myself because autism - being Autistic is an identity for me. It’s not just this thing that was given to me as a diagnosis, or like this label that I want to separate from myself.

Often times you’ll hear like person with autism or stuff like that - ASD - and the - the overwhelming consensus from the autistic community at large is that we choose to claim being autistic as its own uh cultural identity. And that is why I, and the majority of the community, choose to identify in this way. Uh, that also goes for disabled - and some other disabilities choose to identify in this way as well. It is up to individual preference, but for me and - in these episodes - and for a lot of folks, this is how we choose to identify. So… Thank you.

Erica: Welcome back, Yana, for your 3rd time on the podcast!

Yana: Thank you!

Erica: Um, we’ve had some good conversations thus far, and it’s inspired a lot of good conversation outside of the podcast as well, so I’m excited for you to continue sharing with us and expanding our awareness —

Yana: Yay —

Erica: Of various aspects of disability, and disability studies, and all the things. Um, today, we’re gonna talk about the double empathy problem. For those that may not know or have heard of this phrase before, could you give us an entry level understanding of what -what is the double empathy problem?

Yana: Sure. So, I’m gonna take a couple steps back —

Erica: Okay —

Yana: ‘Cause, to explain the double empathy problem, I need to sort of contextualize autism.

Erica: Okay.

Yana: So, people are most likely familiar with autism as, like, this diagnosis of various deficits in like social things, sensory things, um things like that. But a lot of people now are beginning to realize that being autistic is not necessarily like this giant list of deficits or things that are quote unquote wrong with us. It is simply another way of being - another way that our brains - a different way that our brains are wired - because everyone’s brain is wired differently, but our brains our wired sort of divergent from the more sort of typical slash dominant neurology. Um, so because of that, the things that a lot of professionals used to see as sort of deficits - or like symptoms of autism, we consider traits. So these are just things that come with being us - being in our autistic - these traits just come with, you know, how we are as people. So like, everybody has their own unique traits that make them them, and that’s no different for people who are autistic, or really people with any type of neurodivergence - or literally any human.

Um, But a lot of emphasis has been placed on this perceived lack of empathy from autistic people, where like, the differences in our communication style, and the difference of the way we, like, cognitively like perceive things or just - things like that - those things ar looked at from the outside and are said - are said to be like this lack of empathy - this lack of - you may have heard the term theory of mind before, where like, it’s said - oh, like autistic folks are just in their own world, like they don’t understand that - or they don’t have the theory of mind that people outside of their own head are thinking thoughts that are different. And that’s not true [chuckles].

Um, because - okay, it’s, you know, not every person is exactly the same, but a lot of - a lot of autistic folks have like hypersensitivity to the way people are feeling and what they’re - th - like… Because we learn to read - we have to learn to read other people because our communication style can be so different - to make a long story short, as I do, uh, the double empathy problem basically says that autistic folks don’t have empathy - they don’t have this theory of mind - but it fails to take into account that your - like p - not you - not you, but p - you know, people who say that autistic folks lack empathy and lack this theory of mind are also not displaying empathy —

Erica: Mmm —

Yana: Like, they don’t realize that we’re not wired the same - like, we don’t - yeah - we’re - where both parties are different. You’re talking about apples, I’m talking about oranges, but you want me to talk about apples, and you’re wondering why I’m not talking about apples, when I’m talking about oranges.

Erica: Yeah.

Yana: Yeah.

Yana: That makes a lot of sense. And so, so there’s this idea —

Yana: Mmhmm —

Erica: That, because our neurologies are wired differently, and that presents differently in how we communicate —

Yana: Mmhmm —

Erica: And how we process and engage with the world, it is perceived as if the autistic person is either incapable or just lacks capacity for empathy?

Yana: Yeah.

Erica: Is that accurate to what you were saying?

Yana: Yes. Yeah- yeah.

Erica: So how does that then inform or impact the - what - how does that fit into what the double empathy problem is?

Yana: Yeah. So, um… a lot of - a lot of times - like, it goes beyond… the way I think about it is it goes beyond just this idea of empathy - and I’ll talk more about empathy in a little bit - but it goes beyond that to simply just not recognizing that we… are… just wired differently period, and that - that - that that is not a bad thing.

Erica: Mmm.

Yana: Because there are so many, like, um - there’s so many pushes for - for these like autistic kids to meet all the milestones at the same time as their peers, and like do all the things and like speak all the words - act all the same - where people don’t realize that it’s almost like a different culture. You know, like when you go to another country - I haven’t been to another country —

[Erica chuckles]

Yana: [Chuckles] But when, you know, when people who go to other countries go to other countries, you don’t necessarily expect everybody to be the same as the country that you came from.

Erica: The same customs, the same like —

Yana: Yeah. The same style of speaking, the same things that they find important, the same ways that they do things. Um, it - it’s just - it’s different, and that’s just expected, because the differences are not only expected, but like valued?

Erica: Uh huh —

Yana: Versus dominant ways of being and neurodivergent ways of being - not just like - not just autistic ways of being, but just - people who are different from the quote unquote norm - those things are not valued.

Erica: Yeah.

Yana: Or they’re only valued to a certain extent. Yeah… And,… So, to - to bring it back to like empathy, it’s sort of this thing that’s expected, right of humans. Humans should feel empathy. And, at least I was sort of taught or - or shown this like idea growing up that, you know, when people ask oh, what’s the difference between like sympathy and empathy, you’re like, sympathy is where you like feel for the person, and empathy is where you feel with the person.

Erica: Mmm, I heard that also.

Yana: Yeah.

Erica: Yeah.

Yana: And… that is - that can be true - that can be true. But also, there’s like, um, I believe that’s like affective - affective empathy, where there’s also cognitive empathy, where you - you understand what the person is feeling, like why they’re feeling - like what and why they’re feeling.

Erica: Mmm.

Yana: And… often times, both of those things get sort of conflated, where - maybe there could be an autistic person who totally feels with the per - like - like - if you - if say - say someone is having a bad day, and then, like they’re autistic friend comes up, and they could just - it’s like - it’s like in the air, you know?

Erica: Yeah.

Yana: I’m not saying you have to be autistic to like, you know, have heightened um sensitivity, but - but just like, that is affective empathy. Versus, like there could be a completely different person who walks into the room with the person who’s having a bad day, and they - they might not be able to necessarily um feel it in the air per say - or, they might be able to feel it in the air but not know —

Erica: Sure —

Yana: Not have the awareness of what the feeling is - and if you want, we could do a whole episode on alexithymia, uh —

Erica: Oh my goodness, I don’t - oh, actually, I do know what that is.

Yana: Yeah —

Erica: We’ll save that for another episode.

Yana: Sweet. Yeah. Um… So… where was I? So you could have a whole completely different person come in and like, um, they may not like sense the like sort of sadness in the air, like I was sort of talking about, but in, say like talking to the person, they would totally cognitively empathize with like, oh okay, so that’s why - that’s why you feel like this - or like, things like that. Whereas, like the people who say we like lack theory of mind don’t think we’re capable of that.

Erica: Mmmhm.

Yana: Or like, they need us to… there are like layers to emotion processing, which we’ll talk about in a later episode - but, again, there’s this sort of disconnect between the things people observe, like the ways quote unquote experts or professionals, right - the ways that they - they view us from the outside, and what’s actually happening on the inside - or why it’s happening. And that, again, goes back to this double empathy problem, where like, people are expecting us to act or react in a certain way, failing to take into account that that’s not our way.

Erica: Mmm.

Yana: So why do we have to always conform to their way? Like - it’s like code switching, but almost like, I don’t know, like a deeper extent kind of.

Erica: For anyone not familiar, what does the phrase code switching mean?

Yana: Yeah. Um, so - so code switching, I believe it’s a sociological term that basically says - folks from different cultures or ethnic groups or whatever have to sort of switch out the way they are in certain situations. So, like, I’ll use - so I’m from Hawaii, and in Hawaii, we have like, um we call it Pigin, but it’s like Hawaiian Creole English - and you’re sort of expected - especially, like kids who grow up speaking Pigin are just naturally expected, encouraged celebrated when they switch into formal English in school and sort of change… like be more formal in certain environments. That’s kind of an example of code switching I guess. Um… or when, yeah - when people just have to change the language they use, or like the body language they use, the um terms of respect that they use even - it’s just a way to flip between like one culture and another culture.

Erica: Mmm. And so, as a person with an autistic identity, you’re having to code switch, or move between different… ways of being - or mimic code switching maybe is more accurate?

Yana: Yeah.

Erica: In order to… be perceived well or… more understood —

Yana: Yeah —

Erica Blend more in —

Yana: Yeah - yeah —

Erica: To dominant culture?

Yana: Yeah. I’m like nodding vigorously [chuckles] right now.

[Erica chuckles]

Yana: Um… Yes. And, I think, one of the things that - in - in my opinion with the double empathy problem is like, that’s not acknowledged. Like, that we are having to code switch so much.

Erica: Mmm.

Yana: So it’s like, why aren’t you doing this - like let’s train you how to do this - when it -there’s like this gap, right, between let’s train you how do this this and why - there’s, I don’t know - there’s like a gap between like, let’s teach you this - this code that you need to switch to, and like, oh, I wonder what code you’re actually using. Like, that - that part’s kinda missing sometimes - a lot of times.

Erica: And so, for… maybe, uh particularly for therapists, educators, caregivers —

Yana: Mmm —

Erica: Anybody that’s working extensively or intimately with people with autistic identities, what - what would you recommend for them, or what - what would you want them to know that maybe they don’t already know or recognize?

Yana: Mmm. Yeah. So, for - for like caregivers, educators - like, I think I’ve said it before, but one of the biggest things I can recommend is asking those questions. Like, oh, I wonder what code you are using. Like, I wonder why we are making you do these things. And getting to know - uh getting to know like people who are also themselves autistic. Like, autistic kids grow up into autistic adults. And, so much of like -there’s this idea that if you sort of catch it early, then you can train slash therapy the bad parts of autism away —

Erica: Mmm —

Yana: Um, and, you know, I’m using that term like facetiously -the bad parts. But um, that idea of catching it when they’re little, like - also like sort of ignores the existence and value of autistic adults. And like, yes, in the scheme of things, autism is fairly - I hesitate to say that it’s a new - autism is not a new thing, right. Like, there have been autistic people as long as there have been people, right. Like, just because we don’t see all the other galaxies in the world -what!? [Laughs]

Erica: All the galaxies? Wow! We got really - really big real quick!

Yana: [Laughing] Okay, uh —

Erica: Not other planets - other galaxies [laughs]

Yana: [Laughing] WOw, okay. In the world!

[Erica laughs]

Yana: Oh wow, okay. SO - so autism is not a new thing. Right, like there have been autistic people as long as there have been people pretty much. Like, just because telescopes have only gotten as good as they are now in sort of recent times, doesn’t mean the things we’re seeing with the telescopes, you know, have just oh magically appeared. Oh my goodness, let’s worry about all these new things that we’re just now seeing, right.

Erica: Yeah. They existed before —

Yana: Yeah —

Erica: We just didn’t know about them. Or didn’t identify them would maybe a better way.

Yana: Yeah.

Erica: Yeah.

Yana: And so - so - so yeah, there are autistic adults. Like, autistic kids grow into autistic adults. The autism cannot  be cured, cannot be trained away, cannot, you know - all - all it is is teaching - is teaching autistic kids - teaching kids that the way that they are naturally is not okay. That they will not be accepted or celebrated until they’re a certain way. And that is like at the heart of the double empathy problem - is like, this idea that, oh because the kid can’t do X, Y, or Z, that’s automatically bad. And it’s bad because we can do X, Y, or Z. Never mind that they probably do X, Y, or Z, just differently and we don’t recognize it.

Erica: Mmm.

Yana: Um… but because they’re not doing it in the way that we recognize, or the way that we value, that it’s bad. It’s wrong. They can’t do it.

Erica: Yeah. I - you’re so right. I mean, I - I think of multiple examples within my own life - and I don’t have an autistic identity - I don’t have a neurodivergent identity at all, but that double empathy problem, I can see how it translates to other circumstances —

Yana: Yeah. Yeah, like, I was trying to say like, it’s beginning like - it’s - it’s every human is different is different from every other human, right.

Erica: Yeah.

Yana: And it’s just, sometimes differences are more visible, sometimes they’re less visible - sometimes they’re more visible, sometimes they’re less visible, and like - like you said, there’s this - it - it’s not -it’s totally like - um - it’s totally not just autistic folks or neurodivergent folks or disabled folks - like, there’s so many examples of this idea that X, Y, or Z needs to be… seen or accomplished  in this one way, um that’s just not true.

Erica: And then there’s - yeah, it’s just not true, and it causes resulting harm, or even trauma —

Yana: Totally —

Erica: From people trying to make other people conform to one way —

Yana: Mmhmm —

Erica: Of engaging and or being.

Yana: Mmhmm.

Erica: Whoa. Well this is a very big conversation.

Yana: Mmm.

Erica: I hope, listeners, that you’re taking this in, and I would love to hear back from you about how this might  translate to your personal lives —

Yana: Mmm —

Erica: Whether you have a neurodivergent identity, or other types of identities. In what places are you seeing privilege dominating marginalization —

Yana: Yes —

Erica: And then asking it to conform —

Yana: I’m vigorously nodding again —

Erica: To the privileged way of being, when maybe we should just acknowledge that there are thousands of ways of being, and thousands of ways of engaging —

Yana: Mmhmm —

Erica: And communicating, and they’re not - unless they’re causing harm to another person —

Yana: Yes —

Erica: They are not bad or wrong.

Yana: Yes.

Erica: They’re just different.

Yana: Yes!

Erica: SO, we will be talking with Yana much much more. Uh, Yana has one more episode left in this series called When Helping Hurts, and that will go out next week. So I hope you come back and join us for that conversation, where we’re going to be talking about the resulting harm and trauma that comes —

Yana: Mmm —

Erica: Particularly to the disability community —

Yana: Mmhmm —

Erica: But, as we’ve previously discussed here, to multiple different identities  and multiple communities - uh that comes despite good intentions —

Yana: Yeah —

Erica: People trying to quote unquote do good.

Yana: Yeah. And I have one quick note, if I may?

Erica: Yeah.

Yana: I just wanna say, like a lot of this information may be new to people. And it’s - it can be daunting to like try to take it in - or try to like change the way you’ve always done something. And I just wanna say, like… I get it. And, um, this podcast is here to introduce you to new ideas. And like, they may be challenging to you, and that’s - that’s okay. Please just like sit with it, and like ask us questions if you have any questions, or like seek out people, within whichever community, that have the lived experience of the things that we’re talking about. So… yeah.

Erica: On that same vein, Yana, do you have any resources  - um books, other podcasts, etc - that you recommend to people that are interested in knowing more?

Yana: yes. So, I will um give you, Erica - I will give you some articles that specifically address the double empathy problem —

Erica: Okay —

Yana: And I can link to other podcasts by autistic adults —

Erica: Mmm —

Yana: Um, that - just like conversations with -with people who are autistic and people who are not —

Erica: Mmhmm —

Yana: That can help to - that - that - that can like show more insight into like, you know, perspectives that are not just mine.

Erica: Absolutely - absolutely.

Yana: Yeah.

Erica: The resources that Yana’s gonna give me are available to you in the notes of every podcast episode as they come out. They are also available on our website. If you want to know more about the Snohomish County Music Project, know more about the podcast, or get access to the resources, you could always visit us - S as in Sam - C as in Cat -Music Project dot org (scmusicproject.org). Uh, go to the podcast page and all the episodes are listed there.

You can also follow us on social media - we’re on all the major platforms @scMusicProject. If you have any questions, feedback, comments, um please message us via social media - you can contact us via email - um, let us know - we love to hear back from you - respond to you - and start further conversation.

So, just thank you again to Yana, because, uh this - not only are we taking of Yana’s time, but of asking Yana to talk through their lived experience. And I just wanna recognize that it’s - it is something to do the emotional labor —

Yana: Mmm —

Erica: In order to talk through all of this, for the sake of everybody else’s learning.

Yana: Mmm.

Erica: Um, and so I just wanna acknowledge that, and express gratitude for you being willing to do that - especially 4 episodes in row —

Yana: Cool —

Erica: For the whole month of April.

[Yana chuckles]

Erica: Um, thank you, listeners, for tuning in. Please again, keep an eye out for When Helping Hurts, coming out next week. And we will talk to you next time.

Yana: Thank you!

[Podcast outro music plays]