Episode 129 (Season 4): Breaking Down Language and Labels in Autism Advocacy

Show Notes

The language we use to describe Autistic experiences can shape not only how we see ourselves, but how our needs are understood—or overlooked—by others.

In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, discuss the topic of functioning labels in Autistic spaces. Through direct exploration of their own journeys, they unpack the reasons behind the prevalence of labels like “high” or “low” functioning, discuss the roots in societal values around productivity and worth, and offer thoughtful alternatives such as support-needs-based language. They also reflect on the challenges of unlearning internalized ableism, fostering compassion for different arcs of discovery, and addressing community tensions in regards to Autistic people with varying support needs.

Top 3 reasons to listen to the entire episode:

1. Gain clarity on why functioning labels are widely criticized and how they fail to capture the lived realities of Autistic people—especially when support needs, communication, and daily functioning can vary and intersect in complex ways.
2. Hear candid discussion about the emotional impact of language—how shame, internalized ableism, and gatekeeping in neurodivergent spaces can affect community, self-advocacy, and the willingness to seek help.
3. Discover practical, affirming alternatives to functioning labels and why evolving our language helps build more inclusive, supportive, and respectful Autistic and neurodivergent communities.

If you’ve ever wondered about the impact of functioning labels or struggled with finding the “right” language to describe your or your loved ones’ experiences, this episode will challenge, encourage, and inform you about language, identity, and what it means to create more supportive Autistic spaces.

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Transcript

PATRICK CASALE: Hey, everyone. You are listening to the Divergent Conversations podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale.

MEGAN NEFF: And I'm Dr. Neff.

PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health. And there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening.

All right. So, yeah, welcome back to Divergent Conversations. And today, we are talking about the terminology and usage of functioning labels in the autistic spaces. And, you know, this is a hot topic.

MEGAN NEFF: Yeah, yeah. I'm, like, looking forward to this conversation, breaking it down.

PATRICK CASALE: So, you mentioned off-air that you have a lot of nuance to this, and understandably so. I think that's important when we're having this specific conversation. And I think what happens, right? We've talked about this a lot, where people discover that they're autistic later in life and immediately jump into all the things. But sometimes, we get it wrong, or sometimes we say things that might hurt people or offend people, and have to walk it back. And there's a lot of deconstruction work that happens with internalized ableism, in general.

MEGAN NEFF: Yeah, yeah. I think that's really well said. Like, it's part of the learning arc that we're all on. And so, I think when we first learn we're autistic or ADHD, especially if we're coming at it later of life, there's so many new ideas we're learning. And it's really empowering. 

And I think it's also easy to fall into kind of core ideas that is helping us name some invalidation we've had throughout our life, and so we can get really attached to them. And then, in that process, especially if we've not, like, fully dived into the nuances of, like, differences of support needs and differences of, you know, intersectionality, then it's easy to kind of get over attached to some of those. It's what Tiff Hammond, when we had on the podcast, gosh, was probably a year and a half ago. She talked about the autistic starter pack, kind of, she sees all these typically white creators coming in, and it's like they've got their autistic starter pack of like, to be affirming, “We don't use functioning labels. We don't use ASD. We use identity first.” And it's like the checklist of to be a good autistic advocate, “Here are the things you do.”

PATRICK CASALE: Yep, yep. To be a good autistic advocate… To be a good autistic person in this space, here are the things I say, here are the things I believe, here are the things that I adhere to, here are the things that I kind of, like, glom on to, in a way.

I know myself, like I definitely said things that I regret, and have had to have accountability about language, and just unlearning a lot. Because for me, I was like, going full steam ahead in my life, and then all of a sudden, brick wall, burnout, etc., diagnosis, discovery. And all of a sudden, it was like, "Oh, life has now changed in the blink of an eye." But until that time, four and a half years ago, I didn't know what I didn't know.

MEGAN NEFF: Yeah, yeah. I mean, same. Like, it was really funny when Tiff said that, because I looked back at all my early posts and I was like, "Yep." I had a post about, like, "Don't use the puzzle pieces and don't use functioning labels."

And again, it's not like that stuff is wrong to say, it's just, it's so classic. It's so classic that that's the first thing we do. And again, that doesn't make it bad. And it's good to have, like, thoughtful, searching, nuanced conversations. And I think that's kind of what this series is about, is, let's talk about the basics of like, when people are walking into the door. Like, there's a reason we say things like, hey, actually, can you please not use functioning labels? Or, if you're an affirming provider, maybe don't lead with that. So, there's a reason that that's there. And then, can we also nuance some of these autistic starter pack phrases.

PATRICK CASALE: So, Tiff, if you ever listen to this episode, big shout-out to you, because I think you make both of us think very differently about the nuances of all things autism. I mean, I love her posts so much, and just her perspective reframes. But I think we're going to go with the autistic starter pack for this series.

And I think that the reality is, right? You're trying to learn and both unlearn so much. And I think that there's so much emotion built up in this experience where there's unlearning, there's grief, there's relief, there's potential. Like, just that aha, epiphany moment. There could be clarity, there could be frustration, and it all swirls around.

And then, you jump into, like, advocacy spaces, because you want to feel seen and connected to people who get it, and then if you get it wrong, that can feel so demoralizing, of like, “I still haven't found my people.”

MEGAN NEFF: Yeah, yeah. So, like, that's kind of why I started The Nook, is because I was seen in a lot… So, my first part into the community was Facebook groups. And like, I'm forever grateful for that, because, like, I made really meaningful connections, and I learned so much. And then, the more time I spent in those kinds of groups, I was like, "Oh, I'm so nervous about using the wrong word."

Like, I used ASD once because it was in the context of a clinician was asking for a referral for an ASD, and then someone was like, "We don't use that language in here." And I felt so much shame. And I was like, "But it literally is an ASD assessment."

And I've seen that in so many people of like they're coming to know, and then they maybe go into a community, but like, they don't have the language that is the most affirming. And then, they can experience a lot of shame when they, like, misstep in that. And again, back to that idea of like, the learning arc of we have to be able to have compassion for wherever we are in the learning arc, and compassion for one another, of where other people are at.

PATRICK CASALE: That's so well said. And actually, you using the learning arc terminology reminds me that several people on our Instagram did request like, "Could we go over Dr. Neff's entire learning arc, of like, all of Megan Anna's posts?" And I was like, "Damn, that's a good idea."

But I think, and maybe we'll put this in our intro, that way we record. But we want to just say, like, if you catch this episode or a clip of social media, and only see 60 seconds of us sitting here saying, like, this language is, you know, nuanced, and there's a lot of complexity here. It's really easy to potentially take offense to that and to be like, "You two are not being affirming." But in reality, I think it's important to acknowledge like, just like there's a spectrum of neurodiversity, there's a spectrum of where people are at on the learning arc. And there's going to be learning, unlearning, and missteps along the way.

MEGAN NEFF: Yeah, yeah. And it doesn't mean to say that, like, we don't have it right right now. Like, this is a snapshot of us in 2025, with what we know. And I imagine a year from now, 2026, Patrick and Megan Anna might have different views. And so, it's evolving.

Okay, well, let's get into it, though. So, first of all, let's talk about, like, why are functioning labels problematic? Because I do agree with that statement. I do think they're problematic. The thing I think of, of like, how weird would it be, like, if Patrick, I was just meeting you, or, like, meeting an allistic person, and if I was just like, "Hey, like, how functional are you?" Like, that's just a weird ass question.

PATRICK CASALE: You would never ask it.

MEGAN NEFF: You would never ask it, no. But like-

PATRICK CASALE: [CROSSTALK 00:09:05] you would never even think to ask that question, though, that's the thing.

MEGAN NEFF: Right, right. And yet, when you think about how many of us, when we've perhaps disclosed our autism, it can be common to get a response like, "Oh, you must be really high functioning." Or when someone's like, "You know, I've got an autistic kid, or I'm autistic." It's like, "Are they low or high-functioning?" Yeah.

So, I mean, it also points to kind of capitalistic instincts that our society is so obsessed with, like, well, how functional are you? So, I think it taps into some things that are kind of deep-seated things in our society, and it becomes a reflection of that.

PATRICK CASALE: Absolutely.

MEGAN NEFF: Yeah.

PATRICK CASALE: Because, when we start to examine it through a capitalistic lens, right? We are basically saying and placing inherent value on productivity. How much productivity do you offer society? And that feels really shitty. I think, like when the registry conversation was ongoing for a month, and it's died out now, but I'm sure it will resurface its ugly head at some point, you know, I think a lot of the conversation was. And I'm just using air quotes now, geared towards what people and that side of things would classify as, like low-functioning autistic people. But you know, we would say high or moderate support needs in our spheres of influence and conversation. But what they're saying, right, is, like these people who have moderate or high supports needs are not positively impactful on society. They don't offer anything. They don't contribute financially. That's kind of what the messaging was.

MEGAN NEFF: Yeah, yeah, which is deeply problematic. And we even saw some of that… So, when, I always mess up his initials, RFK, Robert Kennedy, when he made his statements, and then there was a lot of responses in the community. And some of the hurtful responses were like, "Yeah, well, I'm not that kind of autistic person." And then, creating a hierarchy of like, we're still tapping into that mindset if it's saying, “Well, I do pay taxes.”

I guess I should back up. His statements were about how autistic people are like a leech on society. And so, then there was a lot of posts around, "Look at how productive I am. Look, like, I do pay taxes." And how, like, we're still falling into that capitalistic mindset, or that… It's not even just a capitalistic mindset. It's a mindset of like, human value is assigned, and human worth is assigned by how much you produce. And so, yeah, that would be an example of where this obsession with functioning reflects something deeply disturbing in our society that negatively impacts all of our humanity.

PATRICK CASALE: Absolutely, absolutely. And it's tied to this movement or mindset, right? Of placing inherent value and self-worth based on what you can produce. And I think that is so damaging, so toxic.

We live in a capitalist society, we experience a lot of autistic burnout, collectively, because we live in a capitalist society, because we have to feel like we have to grind, we have to do the next thing, we have to keep being productive. And it's like we are not designed for that. I know myself like being in the throes of autistic burnout as we record this, and I fall into that, you know? And I think you and I fall into, like, creator types, and we work a lot, and we produce a lot, but I don't like to tie my value and self-worth to what I put out into the world. And I think it also reduces, like, it minimizes the support needs that we have and the accommodations that we build in as low support needs autistic people.

MEGAN NEFF: Yeah, well, that's the other critique, or, like, one other, like, huge critique, I think, is that it doesn't capture the reality of the lived experience of autistic people, in the sense that, like, it doesn't capture those of us with lower support needs. Our functioning ebbs and flows so much. Like, yeah, we can be recording a podcast and look pretty high functioning, and then look at one of us after a day of like being out in the world, and access to speech is hard, access to like, accomplishing our activities of daily living, which is literally how we measure functioning and some of the, you know, measurements we look at is going to be very diminished.

And on the flip side, those deemed low functioning are often minimized. Their functioning is often minimized. For example, for a long time, it was assumed that all non-speaking autistic people had intellectual disabilities. We know that's not true. Like, books, The Reason I Jump, right? Beautiful book written by a non-speaking autistic person. And we're gaining more and more access to the internal world of many non-speaking autistic people. Their functioning has often been like the opposite, where it's been assumed they're less functional than they are.

PATRICK CASALE: Right. And then, when we put the right supports and accommodations in place, things can really shift. And I think that if we're just gaging everyone's quote, unquote, using air quotes, again, for those of you not watching on YouTube, on our channel, which we do have, when we're gaging everything by like this "one standard" it's very supremacist and ableist based of like, if you speak, then you have more worth, or you're more "functional." If you don't use these specific supports, you're "more functional."

And it all ties into that mindset of like there's just this one mentality of specific thought processes or focuses on functionality equates to inherent self-worth, and also cultural self-worth and cultural worth in general. And it's just simply not true.

MEGAN NEFF: Yeah, yeah. And I think this is also where, like, our community has a lot to think for, like the movements around disability justice, of like, a lot of this taps into things that people from the Disability Justice movement have been saying for a long time. Of like, human worth is so much bigger than how our society tends to look at it. And I think you just see it crystallized so clearly in this functioning label. Like, the use of functioning label is you see, yeah, all these values our culture has placed on them.

PATRICK CASALE: And I think there's a long way to go in so many spaces, and how, as I slam my mic into my face, in so many spaces. But like, one area, for sure, is therapist referral groups that really irks me, but I can't jump into every conversation. I don't have the spoons or the capacity. But what you'll see a lot of is like, have a referral for a high-functioning ASD kiddo, or have a referral for a low-functioning person with autism. And then I'm like, "It feels like nails in the chalkboard." But who am I to educate every single human out there who uses language when they're just trying to access support.

MEGAN NEFF: Yeah, yeah. Well, and this maybe will start getting us into the nuance, but like, language is important, and in the sense that clinicians, like, I'm not trained to work with a high support data autistic person. And I would be outside of my scope to do so.

And so, language does matter, and especially when it's like quick, like, when you're trying to access support, and it's like, who can do this? We do need language that differentiates the experience, because the experience across the spectrum is vastly, vastly different. But maybe we can get more into that in a minute, because I do think I agree with you, with the clinical space of even in research papers, I see HFA or high-functioning autism referenced a lot, even though it's not DSM language. But it's definitely been the language of clinicians. 

And again, I get it in the sense of, partly, I think we started using this language when we got rid of Asperger's so, and that was one of the changes to the DSM-5, was to get rid of Asperger's, and then to include everything in the spectrum.

And a lot of families with higher support needs children did not like that. They didn't like the fact that we were now including all of it under this one label. And I think the more people like you and me have gotten more visible on social media, I think there's even more of that experience of particularly from family members, of people supporting high support needs. It's you are not representing our family's experience or my child's experience, and so there is a need to be able to have language to talk about the fact that these are very different realities.

PATRICK CASALE: 100%. Yeah, yeah. Because it would also not be accurate to just lump every single autistic person into one referral request. Like, it would not be like, "Hey, I have a referral for an autistic client." And like, "Oh, that felt like affirming language." But in reality, it's like, I don't know anything else about the situation, or the case, or the context, or the support needs in place, and maybe I won't be the right fit because I don't have the training or the knowledge base to support that person.

MEGAN NEFF: And that's where, I think, like our community has kind of evolved the conversation to the language of, like, low support needs, mid support needs, high support needs, which perhaps kind of parallel. 

So, in the DSM, like you are like, typically diagnosed with level one, two, or three autism. And so, it kind of, I think roughly, I mean, I don't think it's a direct comparison, but I think it kind of roughly parallels that when we use the language of support needs.

PATRICK CASALE: For sure.

MEGAN NEFF: But that might be other language that people see sometimes too. Although even clinicians don't always know about the levels, but that could be a referral like level one autism or level two, level three. And it gets so confusing, because it's like high functioning is the opposite. So, high functioning equals low support needs, the way we classically talk about that, which is level one. And then, level three is low functioning, high support needs. Like, my brain just trying to map it out is getting in a pretzel.

PATRICK CASALE: It's challenging, yeah, for sure. And I think, also, I want to say that with any of this, right? Self-determination is also a big part, because if you are autistic, you do get to decide how you want to talk about your autistic experience and your autistic identity within reason. Let me add the context of an asterisk, within reason.

MEGAN NEFF: Yeah, I would say within reason, because I feel like there might be some people… I feel anxious saying this, but like, if they don't fully understand the experience of what autism level three looks like, they might say, "Well, my support needs feel pretty big, so I'm a high support needs autistic."

And I mean, yes to self-determination, but I do think it is important that the way we talk about certain experiences gets to, like, words need to mean something. Am I making sense about…?

PATRICK CASALE: You are making sense. Yeah, absolutely. Words need to mean something. Let me clarify and back up. I mean more like I have autism or I am autistic when we're talking about-

MEGAN NEFF: Oh, okay.

PATRICK CASALE: …first person, identity first language. I think it's important to have self-determination in that at first, because I understand, I would place that on the arc of, you know, discovery and deconstruction. Now, fast forward to what you're saying, yes, words need to mean something.

MEGAN NEFF: And it's interesting. This is the critique when autism became more of a buzzword. The critique was, and again, this often came from families supporting high support need children is, if autism becomes this buzz word, or everyone's autistic, it's going to lose the meaning, and then like, access to services that we desperately need. Like, what's going to happen there?

And I remember first seeing that when I was early in the space, and being like, I kind of brushed that aside of like, “No, there's space for all of us. And here's why it matters.” And maybe I should give that perspective. I think it really does matter that we're also including autistic level one in the conversation. Because one thing I often say, those of us with lower traditional support needs tend to have very high mental health needs, and identification becomes so core for us in supporting us in how we navigate our mental health journeys. And so, I absolutely think we belong in the conversation.

And I also am understanding the tension of what those early voices were saying, of like, we can't dilute this word to mean nothing. Like, it can't just mean, oh, it's just a difference. Like, we've got to hold on to it as a disability. I feel strongly about that. I know not everyone agrees. And I'm blending disability models when I say that. So, yeah, yeah, this is where it gets nuanced. It gets complex.

PATRICK CASALE: Yes, it is where it gets nuanced and where it gets complex. And I think that's absolutely accurate to say, holding on to that word and not allowing for it to be used in all sorts of different spaces to define different characteristics, because when we are talking about accommodations that need to be built in, not only for, why do I keep saying that? It's going to be stuck in my head all day, "level one/low support needs autistic people" accommodations that need to be built in for moderate, medium, or high support needs autistic people. And they're all going to look a little bit different. And some of them are absolutely, absolutely necessary to get through the day for daily living.

MEGAN NEFF: Yeah, yeah. And so, I think going back to the problematic nature of functioning labels, like, that is a big piece of the conversation that often happens is level one autistic folks, especially those who mask and are late identified, we've often experienced a lot of invalidation throughout our life around our needs. And because of that, we've interpreted it as character stuff like I'm lazy or I'm oversensitive. And so, we can have a really hard time taking our needs seriously. We can have a really hard time asking for our needs or accommodations. And people around us have a really hard time seeing our needs, especially our disability needs, as valid.

And this language of high-functioning doesn't help with that. And it taps into all of the stress of invisible disability, of if I can't see your disability, then society tends to discount it. And then, we're prone to discount it ourselves. And so, this, this really is a huge part of the problematic nature of functioning labels is it makes it so hard for so many of us to build lives that are functional. Like, to build lives that work for us.

PATRICK CASALE: Absolutely, it really does. And I think that coincides with, like, just unpacking sometimes our internalized ableism to, like, pushing ourselves beyond our limits and capacity, because our needs aren't often taken seriously. So, we can start to really internalize that, as if these needs don't really exist, or we're making them up, or they're more than I'm making them out to be, which is a real mind fuck.

MEGAN NEFF: Yeah. I mean, I see that. So, like, you know, yeah, I'm in a community with a lot of fairly newly identified, and that is a constant theme that comes up, is it is so hard to finally take our needs seriously. And like that is a legit sensory need deserving of accommodation. You're allowed to leave. Because for so many of us, we've just, like, powered through and believe we're still supposed to, and then, there's so much second questioning of, like, what did I really have to take disability? Like, couldn't I have stayed? And did I really have to leave that event? Couldn't I have just stayed and pushed through?

PATRICK CASALE: Yep, yep. And then, it again turns into this, like, character defect, personality struggle, or issue, and then it's like, it's just me. Like, I'm the one that's creating this or manifesting this, almost.

MEGAN NEFF: Yeah.

PATRICK CASALE: And it's really challenging. And it's again, just so nuanced. Because when we say that, right? And we're talking about this, it's like, I know there's a lot of people who are moderate, or medium, or high support needs, autistic people who are like in some of these spaces, but these struggles and conversations to talk about low support needs, accommodations, and needs, it gets really murky. I'm not saying this well, but it gets really murky, actually, yeah.

MEGAN NEFF: So, [INDISCERNIBLE 00:27:40] talked about this so well, that whenever you have a marginalized group, what often happens is they end up fighting for the breadcrumb versus like pointing the direction toward the oppressor. And I think it just makes sense that when there are so many needs in the autistic community, and so much complexity, and so much spectrum of needs, right? Like, the needs look different. The need for kind of basic daily living, and then, the need to support someone with really complex mental health, that those look really different. And so, it's really easy to, like, talk over one another, or invalidate one another. And it's like, we all deserve to be here. We all deserve to, like, have our experiences matter. And it's really easy to fall into fighting over the breadcrumb when the resources are so little.

PATRICK CASALE: That's really well said. Yeah, that's so, so true.

MEGAN NEFF: I feel that. I don't know how you feel, but like I feel, I don't know, there's part of me that, like, can own, I speak from my lived experience, and that tends to be, therefore who connects with my work. 

But yeah, every time I write a book or write a resource, like it weighs on me, of like, I know this is for like, a very specific part of the spectrum. And I am. I'm stretching to learn more from those with higher support needs as much as I can. But like, it, I guess, irks me. I just realized that, like, yeah, my content is… It feels, I don't know, I guess maybe discomfort with privilege might be the emotion I'm trying to or the experience I'm trying to name. I don't know if you ever experienced that in your content, but…

PATRICK CASALE: Yeah, I was going to say preaching to the choir. I think it's, you know, trying to learn as much as we can from people with high support needs, and also, acknowledging that that's not our reality, or day to day, or lived experience, like, I think both of those can be true. But I think what you're experiencing and correct me if I'm wrong, like, there is feelings of like tension almost, of like, putting this out there and having the acknowledgement of like, the audience is going to be very different. And who's going to be consuming the information is going to potentially be very different. And-

MEGAN NEFF: And like, will this apply to someone in a different, yeah, yeah, yeah.

PATRICK CASALE: Yeah. 

MEGAN NEFF: The other thing that shifted for me, and this also came out of the April, like, cluster month, you know, last April was just autism got hit with a lot of stuff is, I'm also starting to listen more to parents of high support children. And there's been, historically, and I used to even have this, like, sassy mug I sold on my website that was, like, crossed out autism mom with, like, autistic mom. And like, I used to be really kind of sassy. And again, like, us versus them mentality.

And I'm realizing, like, no, that's an experience I also want to learn from. Because that might be part of the autistic starter pack, because there has been a history of, like, parents and caregivers talking for autistic people. And then, now there's a lot more autistic people, like, talking for ourselves, but that created this, like, don't talk for us, which, again, comes from an understandable history. 

But that's another way that I think I'm softening out of, like, actually, I think I have something to learn from parents and caregivers of high support autistic humans. And so, that's another shift I've noticed as well.

PATRICK CASALE: Yeah, I hear you just trying to be really intentional and open to all perspectives and just acknowledging that it's not just our own. So, that's what I'm hearing from you, is like curiosity, and thoughtfulness, and intentionality.

MEGAN NEFF: Then it leads me to these unpopular opinions, Patrick.

PATRICK CASALE: I think sometimes we just have to stand behind some of those, though, you know?

MEGAN NEFF: Yeah.

PATRICK CASALE: I think it's always about nuance, and the both ands. And it's really hard to find like things for me that are 100% one way or another in any conversation or any topic. And just trying to be really curious about them and really open to different experiences, and thoughts, and perspectives. And also, cultural perspectives as well that are not just like Western perspectives, you know?

MEGAN NEFF: Yeah, yeah.

PATRICK CASALE: So, that's what I'm hearing. But I know how we both are when we talk, and how we overanalyze everything we say. So, it's also [INDISCERNIBLE 00:32:59] all black.

MEGAN NEFF: Yeah. Comes with the territory, yeah.

PATRICK CASALE: Comes with the territory, for sure.

MEGAN NEFF: So, yeah, I think to synthesize it, yeah, functioning labels not helpful. I think there's much more affirming language out there that's accessible. And when we critique functioning labels, remembering that the spectrum is not all the same, and it's important to retain language that helps to honor the different experiences.

PATRICK CASALE: I think that's said very well. So, we're going to wrap up. And we're going to do awkward wrap-ups per usual, because all of you seem to really enjoy our awkwardness and our playfulness. So, we'll see where that comes in throughout the next couple episodes.

But, you know, find us on all the platforms, YouTube, all the things, you know? And also, go check out our sponsor, Jane app, for your electronic medical records needs, for therapy practices, and medical practices alike. You can use the code DCPOD for two months off. And, you know, the links will be in the show notes. And we'll see you next week. So, goodbye.