Ep. 010 | Introduction to the Neurodiversity Paradigm
Today, we chat with returning guest, Yana Ramos, a music therapist, as they give an introduction to the neurodiversity paradigm.
LEARN MORE
Bakan, M. (2014). Ethnomusicological Perspectives on Autism, Neurodiversity, and Music Therapy. Voices: A World Forum for Music Therapy, 14(3). | Journal Article
Neurotribes: The Legacy of Autism and the Future of Neurodiversity by S. Silberman | Book
Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm by Nick Walker | Online Article
Typed Words, Loud Voices by Amy Sequenzia (Editor) and Elizabeth Grace (Editor) | Book
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: An Introduction the the Neurodiversity Paradigm, with music therapist, Yana Ramos, as the second episode of our 4-part series celebrating 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, thank you fr joining us again!
Yana: Hello!
Erica: I’m excited about today. In our last conversation, we touched upon the neurodiversity paradigm —
Yana: Mmhmm —
Erica: But today we’re gonna do a little bit of a deeper dive into the paradigm. So can - before we get started with our coversation, could you help me and our listeners, and can you, uh, define the word neurodiversity for us? And can you define the word paradigm so that everybody is on the same page?
Yana: Yes. So, neurodiversity by itself is just - it’s the fact that we all have different brains and neurologies, and that no one neurology is better than another. And, um, a paradigm is basically like the model from which you like base something off of. So the neurodiversity paradigm is like this model or - this model that asserts that all brains are diverse - like all brains are different, and that no type of neurology is set apart over another.
Erica: So, for clarity sake, now that we know what the - what those 2 individual words mean —
Yana: Mmhmm —
Erica: Could you restate for us what is the neurodiversity paradigm?
Yana: So, the neurodiversity paradigm is the model that says that all brains - all neurology is diverse - is different, and that no neurology is superior or like better than another. From the neurodiversity paraidgm, we got the neurodiversity movement, which is sort of a - an - a branch - an aspect of the social justice movement, um, which comes from the social model of disability, that says - that uses the neurodiversity paradigm to say that because all neurology is important and valuable and that we should celebrate, you know, all neurology - all brains —
Erica: Mmhmm —
Yana: Um, what - like, how are we - how do we make society not only, like, aware but like accepting and celebrating of and accommodating to all of the neurodivergent folks who most of society is currently not those things - accommodating to, accepting of. And neurodivergent means that - people whose neurology is different from that sort of typical - the neurology that is generally like the world is set up for - the neurology that is the accepted - the dominant neurology. SO like, folks who are autistic, um, ADHD, um dyslexic - like people whose brains work differently than other brains. Yeah.
Erica: Mmm. So what types of people are commonly grouped under this umbrella of neurodivergent?
Yana: Mmm. So, under the umbrella of neurodivergent, you have folks who are autistic, folks who have ADHD, folks who have like dyslexia, um, folks who - sometimes people who have schizophrenia or like um bipolar, dissociative identity disorder - there are many neurologies that are not typical of like the - the dominant like neurology, and any of those can be considered neurodivergent —
Erica: Mmm —
Yana: It’s also up to the specific you know person - if that is an identity, you know, they want to like activate - or like say. But generally, like the umbrella is quite large.
Erica: So I have a follow up question then. In a previous episode, I was talking with our mutual colleague, Colby, about music in the brain —
Yana: Mmm —
Erica: And we were talking about neuroplasticity.
Yana: Mmm.
Erica: ANd so, based on that episode and my new understanding of the brain, uh, I think about diseases - like Parkinson’s disease for example, which is something that I am more personally familiar with.
Yana: Mmhmm.
Erica: And, because it’s a neurologic disease that changes the brain over time, that is changing the neurology of the person that has that illness.
Yana:Mmhmm.
Erica: So, potentially, somebody could be neurotypical for a large portion of their life, or for their childhood, or any number of time, and then because the brain is malleable, could enter into a neurodivergent identity at a later point in their life. Am I understanding that correctly?
Yana: Yeah, I think, um, in the way that I understand neurodiversity, totally. Be -because neuroldiversity just says that - it’s a fact, like all brains - all neurologies are different, so when you have a neurology that is atypical, then yeah, definitely.
Erica: Okay. So, as a music therapist, do you change your - the activities you’re doing, or the approach to a client that is neurodivergent in order to accommodate that? Does that change maybe the goals that you’re working on?
Yana: Mmm —
Erica: Can you tell me more about that - what that looks like?
Yana: Yeah, I think, um, for me - because, when I am in the therapy space with someone, I wanna make sure that they can bring all of who they are into the space, that includes certain sensitivities or certain ways of accessing information. So in that regard, yes - like I want to be responsive to the different - the different things that they need accommodation for. But in terms of like goals or the way that I do [chuckles] therapy, um, I don’t necessarily like - oh, like this person is neurodiverget, this person is not —
Erica: Sure —
Yana: Let’s, you know, change the things —
Erica: Mmhmm —
Yana: Um, but I do - like, I wanna make sure that the - the ways that I am setting up whatever it is that we are doing, or the environment that we’re in, um, is responsive to what - whoever it is - to what they need. So, in the room at SCMP here, that - that I see some of my individuals or families in, it has fluorescent lights, so we have covers on the lights, because folks can be sensitive to the like flickering of the lights - I - that’s what I’ve been told [chuckles].
[Erica chuckles]
Yana: I - also those lights like buzz. So like, have had clients come in and turn the lights off. And - and that’s fine, like we don’t —
Erica: There’s a window in that room —
Yana: Yeah, there is a window in the room —
Erica: It’s still lit.
Yana: Yeah. Yeah, so like I just wanna make sure that the ways that will facilitate being present, for the client, are honored and responded to.
Erica: Mmm —
Yana: And, yeah, so…
Erica: So in another previous episode, uh I was talking to Colby again about uh trauma-informed care in music therapy.
Yana: Mmm. Mmhmm.
Erica: Is - what is the crossover between, um working with uh neurodivergent paradigm - or near - with the neurodiversity paradigm, but also with a trauma-informed approach?
Yana: Okay, so that’s a good question, because um for me um… there are ways, because - because neurodiversity is not always celebrated, often times folks who are neurodivergent are put into environments that say you need to do this and be this way in order to be considered valuable to society - and the majority of the clients that I spend time with have undergone or are undergoing therapies that, for the most part - I don’t wanna make a blanket statement - but therapies that like try to assimilate them into a certain - more typical ways of existing - of being in the world —
Erica: Isn’t it assimilating them into like quote unquote neurotypical —
Yana: Yes —
Erica: Behaviors?
Yana: Yes. So, to make - often times the goal, even if it’s not explicit, is to make the - especially like kids - is to make the kid like indistinguishable from their, let’s say from their non autistic peers.
Erica: Mmm.
Yana: And often times that comes from a place of like - yes wanting to help, but not realizing that it’s not helpful in the long run. Because there are studies that show, and also so many people who are no longer like kids, who are able to say, like, that was very traumatic for me - like that was a very huge traumatic part of my life, going through those therapies. So, for me, I wanna make sure that we don’t, like - we don’t repeat those types of like traumas when people are doing therapy with me.
And so like, my goal - I mean [chuckles] obviously my goal is not to assimilate clients into any - any way of being that is not who they are, um —
Erica: Mmm —
Yana: And, like, I’ve had clients who’ve told me about certain traumas that they’ve experienced due to their neurodivergence um in certain environments, and when I responded by saying, like, we don’t do that here - like that is not, you know, what - whatever the thing was, we don’t do that here. Um, this like sigh of like relief um that - that they were able to like breathe… So all of that to say like - I don’t wanna repeat the traumas that people have been through due to certain therapies because I wanna support all of who they are.
Erica: Mmm. So, what are the reactions. Can you tell me more about the reactions or responses from caregivers or family members when you explain this approach that you have to therapy?
Yana: Yeah. So, I try to tell whoever I’m working with, or their families, that what we’re going to do in our time together might look different to what - to other things that they have seen or have - or are experiencing now —
Erica: Mmm —
Yana: In other therapies —
Erica: Mmhmm —
Yana: And… I do - I try to explain this because um… when I didn’t like - maybe when I wasn’t as clear, like people have given me feedback later that’s like - I’m confused, like I signed up for therapy, but we’re not doing therapy in a way that I’m - I’ve experienced, you know, for my child or whatever. But then when I was able to sort of articulate why I practice the way I practice, or like or like, you know, we’re not here to change things or what have you, that that like alleviated some of the sort of confusion, or like this idea of like are you doing therapy - like what’s happening? Or, when I am able to articulate to clients like, we’re not going to do this thing that you experienced, like there’s this - this the ability to like relax and - and know that like the traumatic experiences that they’ve experienced in another environment, my goal is not to repeat that.
Erica: Mmm.
Yana: And that they are able to - like I give them full permission to let me know if something is making them uncomfortable, and we will work together to, you know, not introduce elements of discomfort that - that bring up those traumatic memories.
Erica: Mmhmm. For listeners that work in any sort of human service or social service profession, what are some more generalized ways that professionals can better support —
Yana: Mmm —
Erica: Neurodivergent people or neuroderv - neurodiverse families?
Yana: I think the biggest thing to support neurodivergent people - and really all people, but uh neurodivergent people in particular, is to keep in mind that, like this is a way that - this is part of who we are. I f you change - or if you try to change or like dismiss a thing about us that comes from being neurodivergent, then you change who we are fundamentally. And that’s not okay. Sometimes, when people don’t understand certain aspects of like - I’m just gonna use um autism as a - as an example - like, when people don’t understand like the - the meaning or like the motivation for some things that - that someone might do, who - especially someone who might be nonspeaking, and they’re doing a thing that people deem like either dangerous or just plane like weird —
[Erica chuckles]
Yana: There are - there are - there can be like real reasons for that that they’re trying – that that person is trying to communicate, and the only way that they can communicate is through this behavior that like people are trying to stop, without necessarily like asking why, or like looking for that - the - the I guess meaning or motivation… Because, in a lot of cases, behavior is communication, right.
Erica: Mmhmm —
Yana: And so if someone is in pain… like, and the only way they can tell the world that they’re in pain is by doing a behavior that, you know, may look - could be - is by doing a behavior that is harmful to themselves, but that’s the only way they know how to say like please notice that something is going on in my body.
Erica: Mmm.
Yana: Um, the best thing to do to support that is to like try and figure out what’s going on. And that could be eliminating factors in the environment - like maybe uh things that are triggering some like sensory uh sensitivities, or like giving this - giving the person access to communication. A lot of times folks who are nonspeaking are also assumed to just not be able to understand, and that’s not - that’s not always the case.
Erica: Mmm —
Yana: So, like, access to communication is important.
Erica: Mmhmm.
Yana: Access to spaces where there are… access to spaces where people like them are celebrated, and not just like separated from other people… um…
Erica: Mmm. It’s asking more questions —
Yana: Yeah —
Erica: Than making an assumption —
Yana: Yes —
Erica: Based on whatever you perceive to be happening —
Yana: Yeah —
Erica: Because it’s not part of your normal, does not mean that it is unnecessary, or frivolous, or - it means something.
Yana: Mmhmm.
Erica: And so ask more questions. And if you need to, take some steps to better understand –
Yana: Yeah —
Erica: Rather than go straight to judge.
Yana: Yeah. And - and I wanna uh put a caveat that like, sometimes, some behaviors are not able to be helped - like sometimes there are motor tics and things that —
Erica: Sure —
Yana: That are not necessarily communication. But again, that’s a part of the person’s neurology that you should still be curious about, and like, you know, don’t just assume that - either that nothing’s going on or that something’s going on. But like, just be curious, and recognize -recognize that we are all worth your curiosity.
Erica: WOw. That - yeah. That’s really good. I feel like we’re going into next week’s topic —
Yana: Mmhmm —
Erica: So I’m gonna cut us off here. Next week, we’re gonna be talking about the double empathy problem. Yana, since you’re gonna be with us again next week, can you give like a 30 second synopses of what is the double empathy problem?
Yana: Yeah, so - 30 seconds, huh? [Chuckles]
[Erica laughs]
Yana: I appreciate the timeline. So, the double empathy problem is basically - is basically this lack of curiosity - this lack of like maybe I don’t understand what this other person is g - is experiencing. Um, and that’s - that’s - that’s where the problem really comes in - is not recognizing that there’s stuff that you might not know.
Erica: Mmm. So, listeners, stay tuned for next week, we’re gonna talk about the double empathy problem, and then the week following that, we are talking about when helping hurts. And that will be the final episode in our celebration of autism acceptance month8 for the whole month of April.
Yana, do you have any resources that listeners can investigate further about the neurodiversity paradigm and its various impacts and implications?
Yana: I - I have many.
[Erica and Yana laugh]
Yana: Um off —
Erica: DO you have a couple that you can share here —
Yana: Yeah —
Erica: And then we’ll link any others that you have available?
Yana: Okay, so I do have um quite a few resources, um but I will just mention one right now, called Typed Words, Loud Voices, which is by folks who are mostly or sometimes nonspeaking, so folks who type to speak. And it’s an anthology of their - it’s an anthology of their words. And there’s others that I will give to Erica to put in the episode notes. And, yeah.
Erica: Awesome. As Yana mentioned, I will link resources in the episode notes for this podcast. Uh, if you scroll down you may be able to see them, but they will also be on our website, if you go to the podcast page then find the particular episode, you will see all the resources linked so that you can find them easily.
Our website is S as in Sam - C as in Cat - Music Project dot org (scmusicproject.org). You can also follow us on all social media platforms @SCMusicProject. Um, as I mentioned previously, next week, we will talk about the double empathy problem. Please come back - join us for that conversation. Um, huge thank you again to Yana, for continuing to share their wisdom and expertise. Thank you, listeners, for listening - a podcast is nothing without people that are listening to it.
Yana: Yes! Thank you, listeners!
Erica: And we will talk to you next time.
Yana: Byeee!
[Podcast outro music plays]