"Hyperactivity is not the word"

Collective ADHD Storytelling with Hanna Bertilsdotter-Rosqvist + Lill Hultman

New podcast episode alert:

Bc I know most of you prefer to read, below you will find some highlights from this much longer interview, lightly edited for clarity/length. You can listen on Substack, Spotify, or Apple, and find a full transcript linked in the show notes.

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Jesse: Usually when you read about ADHD, you find two main narratives, both of which frame it as a problem: one is a deficit narrative that locates the problem inside our bodies. The other is a social construct narrative which locates the problem in the way our bodies are labelled by medicine. 

I’ve been frustrated by both of these narratives — I think the deficit story is too simple and tends to overlook the politics of disability, and the social construct story, while it is right to be critical of the way that knowledge is constructed, can easily fall into disability-denial territory. 

I know for me, even if I didn’t label myself ADHD or autistic, I would still be a chaotic obsessive weirdo who can’t go to the grocery store without headphones on or do paperwork to save my life! Of course, labels are imperfect, but we need a way to talk about our very real struggles and differences and experiences, and I think we need another story that's both politically critical and disability-affirming.

Back in 2021, which was my sassy Medium essay era, and I wrote something called We Need Critical ADHD Studies Now — mostly inspired by my obsession at the time with Critical Autism Studies, where autistic researchers were theorizing about and deconstructing autism. I was very pleasantly surprised to find that people actually read that essay?? 

I recently stumbled across myself quoted in a 2023 paper by a group of researchers in Sweden called Naming Ourselves, Becoming Neurodivergent Scholars. It’s by six ADHD and AuDHD¹ scholars who work in various disciplines and wanted to collectively ‘re-story’ ‘the problem of ADHD’. 

They did this through an ‘iterative writing process’, where it sounds like they basically passed a Google Doc around, each adding bits of text over time. They write: 

“This was a way to use our abilities of association thinking, to use our ‘spontaneous mind-wandering’ where the aim was to follow associations and write them down so that the rest of the authors would be able to follow different threads of thought. This included writing a first version of the text with no demands to make it ‘narrative coherent’.. 

there were no expectations of ‘linear writing’, before sending the text further to the next in line, each person was expected to go back to the text after that and ‘fill in the gaps’ or ‘skipped steps’. We wanted to enable all authors to write in their own ways and explore it and their ADHD stories in a safe space. In order to produce a sense of collective anonymity from the start, all of us wrote with different text-colouring in the document (to get a visual sense of our different voices), but no one signed their stories with their names.”

I find this paper very meta — they’re re-narrating ADHD through a very ADHD writing process. Another paper by the same authors, published a few months after this one, goes into more detail about how ADHD might be described differently from the inside.

They write that intensity and variable attention feel like better descriptors than hyperactivity and inattention, which only capture small, observable bits of their whole felt experience. This is one of the most relatable papers I’ve ever read, both are free to read and I really recommend them, but instead of infodumping about them to you, I sat down for a chat with two of the authors.

l to r: hanna, lill, and me

Hanna Bertilsdotter-Rosqvist is a sociologist and a professor in Social Work at Södertörn University and co-editor of the book Neurodiversity Studies, and Lill Hultman is a postdoctoral researcher at Marie Cederschiöld University and senior lecturer in social work at Södertörn University.

We discuss their experiences creating this work, the challenges of being ADHD in academia, what intensity means in their lives, and what they’re most excited to explore in the emerging field of Critical ADHD Studies. 

They met at a conference in 2017, and Hanna recognized something in Lill.. 

Hanna: I think we took a walk, and I'm not sure if I suggested by then, but very, very early I suggested that Lill was an ADHDer.

Lill: I remember that very strongly, because you were just standing outside in the rain. I just found you and I kind of thought about, you know, the cartoon Totoro? And I was like, “Who's that?”

I became very curious about you, and I liked you a lot. I know I was very skeptical when you said, I think you are an ADHDer. I'm like, what?!

But then when I started reading, I recognized some of the descriptions, but I don't feel very comfortable in the medical paradigm. I kind of got more and more convinced. I think curiosity made me want to work with you and explore ADHD.

Jesse: You talk about that in the paper, that you named yourselves, but then you also named each other. And that was a very, I guess, validating experience?

Hanna: Yes, you don't have to be defined within the medical paradigm, because you're defined within more of a neuro-affirmative framework. You're seeing yourself in each other, and that's a much more friendly way of being acknowledged. 

In 2009, I was on fieldwork among autistic people. I didn't know anything about myself, and they were similarly kind of affirming, or naming me, as autistic. So I got my first community diagnosis as autistic in 2008 or 9, and it was very friendly and warm. It's more like, you're part of us. It's not like, ‘Oh, what is that?’ But it's more kind of, ‘Welcome.’ 

[Editor Jesse Interjection]: Hanna, Lill and Co called their process ‘ADHD collective autoethnographic storytelling’ which is a mouthful, and I want to give you a little bit more context about where it comes from.

So ethnography is a qualitative research method that comes out of the social sciences. Think an anthropologist going out into the field to study a group's culture by observing and recording their daily lives. Autoethnography is when you do that, but about yourself? You tell stories about your experiences in the context of your culture.

According to a 2015 book on autoethnography by Adams et al, the method “uses deep and careful self-reflection to name and interrogate the intersections between self and society, the particular and the general, the personal and the political.”

Instead of thinking the researcher can be a purely objective observer, autoethnography leans into subjective experience in order to more fully understand society. Collaborative autoethnography, where a group of researchers come together to share stories that can act as their data, emerged quite recently in the social sciences, and because it can be done over Zoom and across distances, it's become more popular since the pandemic began.

I asked Hanna and Lill if they could talk a bit about what the experience was like for them.

Lill: I think it was really a fun process. I mean, research can be fun, but this was like, really fun, because it was so free. And I think it was like, the bottom-up thing, you know, everyone was just throwing out things. Everything was allowed, I think. No one interfered and said, no, no, no, you can't say it like that, it can't be like that… It was really a very nice collective dialogue.

Hanna: I get a bit tired when I do an individual interview with someone, as it would be repeat stories. I'm asking things which I kind of knew about before, and that person will repeat or respond in a certain discourse. But when we are writing together in this kind of collective way, we're developing new methods and discourses about ADHD.

Lill: Yeah, you could really fill in the blanks, and it didn't really matter if someone interrupted someone else. I like that it was a lot of free associations, and I also like the idea that it doesn't have to be ready. I mean, sometimes you have a thought and you don't really know yourself where it's going, and then in some contexts, you can't really present things that are not thought-through. You have to be very concise. And I really liked that here, people would start on a thread and sometimes it made sense and sometimes not so much, and that was kind of fun.

Jesse: There was a line about the finished product maybe being a neurotypical² concept? And I've been thinking about that a lot, because I have a lot of anxiety when I write like, Oh, is this finished?

Lill: Sometimes when you're in a research group where there are more neurotypical people, I kind of forget that it doesn't really work like that, you can’t say something that's not properly finished because then you can see everyone looking at you, it's like, what are you talking about?

And then you can go, Oh. Sorry, I kind of forgot to contextualize. I was just in the middle of something, and then I have to slow down and give much more detail. So I think that's really a difference. 

Jesse: There was a line in the paper about like, having to learn to tolerate chaos, which I love, because I feel like I'm always doing that in my life.

Hanna: But I think it was stressful for some of us, as I think we thrived more or less in this chaotic situation. Some people thrive with this kind of unordered chaos, and are just looking forward to see what's going to happen, but otherwise it might be too stressful. Then you want to have the more top-down [approach] and know, where are we going? What are we supposed to be doing here? 

And I find it hard sometimes to translate that, because I love just looking where we are going and finding our way as we go, in some way, trusting that we will get to some point where we can finish the paper.

Jesse: Yeah, that's the challenge of cross-neurotype collaboration, that sometimes there's that clash of things that you need.

Lill: Yeah, I agree. I just find that so fun. I think I like that part of doing the collective storying, because I think that makes it easy, but I can recognize that some people are very uncomfortable with not knowing. And since I've been working with you, Hanna, it's very organic and very fun in that way. It's very explorative. 

And then you come into a traditional group and they talk about, “Now we're going to explore this.” And I feel like, no, we're not, because it's already decided! It's very much top-down, so I don't think it's really exploring in the same manner. 

Jesse: What is that like, being ADHD in academia, and why did you feel like it was important to come out? 

Hanna: My coming out process has been a kind of strange road, because I started as an autistic researcher, I [was] quite open as that. And then I started to realize, no, it's not only about autism, it's also a little bit of ADHD, and how to kind of, renegotiate that role. And I still don’t find it easy, because sometimes I feel like I can really stand as an autistic person because it kind of, is me. I can feel stable in that identity and that feeling, but the ADHD thing is more vulnerable. I think sometimes I don't feel ADHD enough…you don't really know how to position yourself when you are a little bit of a mix. 

Lill: I think that's interesting, because I've been formally diagnosed with ADHD. And I was like, no, it's not a big deal. It was really my daughter who said, if I'm going to do testing for ADHD, you have to come along. And I was like, fine, I don't care. But then, when I got the diagnosis, it was a mixed sense of feelings, because I've always felt that my timing has been off.

I've always been very intense, but I just didn't think about it as ADHD because I always thought, Oh my gosh, people are so slow. Can they move faster? Can things go like, this, this, this? And that was kind of funny, because I was like, Aha, I have a faster pace.

I think that for me, it was important to be open about my diagnosis, to counteract the stigma, to say that I'm not ashamed of this because it can mean many different things. It's okay, and you have to contextualize it to understand it. You're always something in relation to something. It's not just a vacuum or something that's permanent. It's always in relation to a context, another person, a situation. 

Jesse: I loved the description of ADHD as intensity. Could you talk a little bit about how you would describe it from the inside?

Hanna: I'm very inspired or interested in phenomenology, that you really start to feel and make concepts from your own bodily experiences. And for me, hyperactivity is not the word, it doesn't fit with my sense of me. 

But once, a colleague of mine said, after we've been away from each other and then met up again and we were starting to talk, she said, “Oh, now I remember. It's so intense.” So that was kind of [like], ah, that's why there is a problem, because I get that it's too intense for her. 

So back to what you, Lil, were talking about, that you need certain intensity to not get bored. And I think that is more my word than hyperactivity…It's a pace, and it goes well together with this variable attention. It's not deficit attention. It's variable attention. And sometimes you really need to have that intensity in order to focus, and sometimes you get to sleep and [turn] off, but I go back and forth between high intensity and sleep.

Lill: It's kind of funny, because for many years, my ex had this speed dial, and he called me ‘intense’, it was his nickname for me…

I always think about it as having high energy, because it happens when you're happy, when you're engaged, when you want to do something. So it's not like, a negative thing. When you're intense, you're really into something, and it's something that's interesting and something that's engaging. I really think it's more positive also, and more accurate. 

Jesse: Yeah, I really relate to that, and also the way that intensity can be hard to deal with where you're like, hyperfocusing on something for a long time, and then you burn yourself out accidentally and then you have this huge drop in energy, but I feel like that's not usually the way that it's described from the outside.

Hanna: Yeah, no, I can't be different. Sometimes I hear that I'm very intense and, “Oh, you're so focused,” but I can't be otherwise. It's like, either I'm off or I'm on. When I'm on, it's hyperfocused or very intense. And when it's off, I’m kind of, off. And I think neurotypicals [are like], “Can't you just be a hundred percent? Do you have to be 150 percent? Can you just be a hundred percent?”

I can't switch it off, and when I switch it off, you won't be able to communicate with me, because I will really be off. 

Lill: Yeah, I recognize that, because sometimes people can say, “Why can't you rest for a while?” No, I can't really rest either. I'm fully awake or I fall asleep and it's really bad. I tried to do the yoga thing and it was like this body scan, and I didn't get to the left side of my body, because I fell asleep.

Hanna: Sometimes we take on too much, and currently we are finishing a book and it's like, yes, it is too much. It's really hard to know where is the too-much and the nice-too-much, to find that kind of barrier…I really like it when it's almost-too-much.

Lill: Yeah, I think in that sense, I find it kind of difficult to plan ahead, because I never know beforehand how I’ll experience the workload, because it depends on so many things...you never know how it feels from day to day. Some days, everything goes smooth and easy and you get really hyperfocused and you can go on for 18 hours and be really, really happy. Another day it can be like, after one hour, you're dead-beat. So it's really tricky, I think. 

Jesse: What are you most curious about studying?

Hanna: Sensory stuff… It has been done in autism studies, but I’d really like to do it in ADHD studies. Similar to the previous studies we have done, we're now starting to work with our sensory experiences in nature, to be a collective of ADHDers and AuDHDers, to kind of think about how we experience nature in different ways.

Lill: I think I want to explore more about the emotional parts, because I think it's so interesting that you kind of take away something that's like a core thing for ADHD… the strong emotions. I'm not very keen on calling it emotional dysregulation, but I'm like, too tired to find a better word, but I think that's really interesting to connect [it] with the energy cycle.

How does it affect you if you're like, a group of individuals that have different types of ADHD or neurodivergences? How does it affect you when you're a couple or when you're a family, can you have another narrative other than the deficit narrative.. how can you manage? I think that a lot is lacking over there, because I mean, sometimes when you do the family stuff, the professional people always assume that parents are neurotypical, which is weird.

But then you get all these strategies for someone who's not an ADHDer, so how are you able to manage those and be able to cope with something that's not really fitted with your brain? I really want to dig deeper into that.

Hanna: Perhaps double empathy problem.³ No, not double empathy problem, but double attention problem. We have been playing with that. What does it mean when you have different kinds of attentions, and the clashes between different kinds of attention, if you have variable attention or some more monotropic attention or more neurotypical attention, a social attention versus interest-based attention.

I think there’s a lot of things to explore, I think it's connected to the pacing thing, but to kind of develop the meanings of attention in different ways. Because I think a lot [is taken for granted], you're supposed to be able to focus your attention on certain things, and how that gets normalized. How can you also make other ways of attention be similarly valid?

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Listen to the full interview here. I would love to chat with more neurodivergent scholars, and/or ADHDers creating alternative narratives in their work somehow. If you’re interested in coming on the slugpod, send me an email: welcome2slugtown@gmail.com.

1. Autistic and ADHD. From the paper: “Some of us have a formal ADHD diagnosis (ADHDer). Some of us are formally diagnosed as ADHDer but also acknowledge their autistic traits (AuDHDer). Some of us are formally diagnosed as autists but also acknowledge their ADHD traits (AuDHDer).” (I am in camp #2, fyi)

2. I just want to caveat here really quick about the term neurotypical, because I see a lot of people take this as a very literal, almost biological description of a person’s brain and that’s not really how the term is used in neurodiversity studies. Neurotypical is more of an ideal, it’s a norm of cognitive functioning, and some people hew closer to that norm than others, which means they run up against less friction in the workplace and at school. Neuroconventional is another word used sometimes that might be a less easily essentialized term, but I just want to make clear that neurotypical and neurodivergent describe relationships to cognitive norms, they’re not static, immutable biological types.

3. If you’re not familiar with Critical Autism Studies, maybe you don’t get this reference. The double empathy problem is an idea that comes from the researcher Damian Milton, which basically says that empathy is a two-way street. For a long time (and still today honestly) people thought autistics lack empathy and this is what causes struggles with social skills, but Milton was like, no actually I think autistic people have their own way of relating and non-autistics don’t understand it. This idea has actually been tested, and researchers have found that a group made up only of autistic people communicated amongst themselves just fine, which was also true for a group made up only of non-autistic people, but the communication problems started happening when the groups were mixed together. So Hanna is wondering if maybe this could be applied to different kinds of attention styles, too.