Summary
Jens and Frigga talk with Dan Coultas about Neurodivergence. In general and in modern heathenry.
Epsode 31 Part 1.mp3
00:00:09 Jens: Welcome to the Wyrd Thing Podcast episode 31, which is about neurodivergence. My co-host today is Frigga.
00:00:13 Frigga: Hello.
00:00:14 Jens: And our special guest today is Dan Coultas.
00:00:20 Dan: Hello, everyone.
00:00:21 Jens: Dan, would you please introduce yourself a little bit to our listeners?
00:00:25 Dan: Yeah, sure. So as you said, my name is Dan Coultas. Um, I’m a heathen. I’m fairly active within the heathen community here in the UK. So I’m the general secretary of Asatru UK. I help run Heathens of Yorkshire. Uh, in the past, I’ve been chair of the Confederation of UK Heathen Kindreds. I’ve had positions on the Pagan Federation, Defence Pagan Network, lots of stuff like that. I’m currently a postgraduate researcher at the University of Leeds within the Institute for Medieval Studies.
00:00:57 Jens: Thank you. We come back to the last part later. But to get into the topic, could you please provide us first with a definition of what neurodivergence means and for starting with a more medical point of view, and then we switch to more personal points of view there.
00:01:13 Dan: Yeah of course. So I’m taking these definitions, first of all from the Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies. Which is a book that came out at the start of this year. So the first one I’m going to define is neurodiversity. So neurodiversity is the diversity of human minds, the infinite variation in neurocognitive functioning within our species, because a lot of people don’t know what the difference is between neurodiversity and neurodivergence. Neurodiversity, what that’s saying there is essentially it applies to everyone. This is just everyone’s brains and the diversity within, within those brains. So neurodiversity applies to everyone regardless of neurotype. So we then move on to neurotypical, which is another phrase that people might have heard of. So this refers to those whose neurocognitive functioning falls within the majority or dominant social standards of normal. And that’s what’s referred to as neurotypical. So it’s what falls within society’s understanding of what a normal brain is considered to be. And then, of course, we move on to neurodivergent. The title of today’s episode and our main topic and all that means, is it’s a term that is used to describe people who are neurologically divergent from the typical. So anything that doesn’t fall within that definition of neurotypical that we had before. And so that’s sort of the, the textbook definition, um, that we’ve got there. Now, these things can mean slightly different things to slightly different people. And you can operate within those sort of definitions to apply your own filters as to what you think is considered within the neurodivergent umbrella and what isn’t. So most people would agree that things like autism and ADHD definitely class as neurodivergent. And those are sort of the main ones that everyone kind of agrees on. I personally, and a lot of other people as well, but not everyone also include what they would call acquired neurodivergence. Um, so that is things like PTSD, which is something that I have myself, but not everyone includes those within their definition of neurodivergent. Some people think it’s just those conditions that you’re born with, the developmental ones. So your ADHD, your autism, there’s other things as well. You know, some people would include things like dyslexia and dyspraxia in there. Anything that’s making your brain atypical is by some definitions then neuro divergence.
00:03:50 Jens: Which leaves us again with the issue of what is typical. I’m really struggling with that concept. And you said within the society, it’s also depending on the society you’re living in. So I’m pretty sure there are some cultural shifts in this meaning of what is typical, what is considered normal.
00:04:07 Dan: Yeah, definitely. And, you know, we’re going to talk a little bit later on about historical neurodivergence. And then of course you get this sort of time shift in there as well. It’s not as easy to define as, you know, like a physical medical condition where you’re like, you know, the this is exactly what it is, because it does shift. It does change with time, and it depends on the society and the place that you’re operating in and the time that you’re operating in.
00:04:33 Frigga: Yeah. And what has crossed my mind in how far you can compare it with LGBTQIA+, which is also a natural variety of our human beings. And you talk not about neurodiversity, but diversity. There is also the norm and everything which is not the norm. And you see, there also is luckily a huge change in shift. How we look at that. And it’s just also seen it. It’s just varieties.
00:05:01 Jens: I’m more familiar with LGBTIQ for some obvious reasons to the regular listeners of this podcast. My slight issue, but then we should move on with that is that I have a very clear definition of what is queer and what is not queer, because queer or LGBTIQ + is everyone who is not both cis and heterosexual. So anything outside of this norm. And that’s a very clear, defined norm, whereas this definition of neurotypical is very unclear to me.
00:05:34 Dan: It’s a challenging concept. And you are you know, you’re right to to sort of question it. It’s this fluid thing and it’s changeable. And I think that does make it much harder to pin down. I think, you know, we can sort of consider anyone who is not autistic, does not have ADHD, does not have PTSD, does not have, you know, any of these conditions that could be classed as neurodivergent. If you don’t have any of those, you have a book standard brain that, you know, thinks in the same way as the majority of people. I’m not saying you think the same things, of course, because that nobody thinks all the same things, but it’s about how neurology is wired up and how you think and how you process things.
00:06:15 Frigga: It took me a while to understand. I know now for about 30 years that I am dyslexic, for about ten years autistic, and only for a couple of months that it is AUDHD. So the combination of autism and ADHD and I’m self-diagnosed. But yeah, I look into stuff and indeed what is it? And you have to learn all these different things and it is so much new words. You have to learn. What do they mean with it? What exactly it is.
00:06:48 Jens: Okay. I think we’re moving over to that second question, which is how do you define neurodivergence for yourself?
00:06:55 Dan: Um, so for me, I say my sort of personal interaction with this. Um, so I myself am diagnosed with ADHD. Um, it was quite a late diagnosis that I had so that it was only 3 or 4 years ago. Um, obviously, I’ve had it the entire time. It’s just, uh, didn’t get diagnosed until that point. I think a lot of that came from, you know, the time, the place that I grew up, it tended to be naughty, disruptive boys that got bad grades, that got diagnosed. Um, I was a naughty, disruptive kid that got good grades. So I got allowed to do whatever I wanted and didn’t get a diagnosis. And I also have complex combat PTSD. Um, I’m saying that because my personal experience will obviously flavour my sort of personal definition. So I very much include what I term acquired neurodivergence in my definition of neurodivergence as well. So that’s as I said, acquired things is things you’re not born with. Slightly the language there again is still slightly difficult because if you’re talking about developmental and acquired well by a dictionary definition, those two words mean the same thing. But when we’re talking about neurodivergence, what we mean is developmental is the things that you’re born with. It’s developed in utero is the idea there and then acquired is something that happens to you after you’re born. So things like PTSD come under that, things, you know, certain brain injuries and stuff could also be considered there. Um, there’s an important distinction point here as well. It’s something that me and Frigga have talked about earlier, is that something can be neurodivergene and not be a disability, but something can also be neurodivergence and be a disability. So I don’t consider my ADHD to be a disability. It does challenge me in some ways. It makes some things in my life harder, but it makes other things in my life easier. And it makes me good at things and it makes me bad at things. So it’s not, I don’t consider it a disability. It’s just a difference. My brain works differently. It allows me to do things differently. On the flip side, the PTSD, which I do consider to be neurodivergence, but I also consider that to be disabling because there’s no benefit to having PTSD. It’s rubbish. And if I could get rid of it, I would. Whereas with the ADHD, if I got rid of my ADHD, I’d be getting rid of me. That’s what I’ve always had it. It’s who I am. It’s how I work. You know, if I was offered the medication for it, I wouldn’t take it because I don’t know what it would turn me into. You know, I function now. I do quite well for myself. Um, if I take that away, what do I become? I’m not me. Whereas I’m not my PTSD. So I suppose that’s kind of the distinction, that it can be a disability or it cannot. Um, really? Really depending.
00:09:39 Frigga: Yeah, I truly can relate to that. To me too. I mean, my physical illness there, I use disability, but my my dyslexia, my AUDHD, I don’t consider a disability knowing that it plays a role. Makes a lot of difference. I mean, I realize that I’m on the hyperfocus now. Looking into it.
00:10:01 Jens: Okay. Both of you have been active in the heathen community quite a lot. And you’ve participated and organized a lot of events. So I would like to get some advice out of you, basically how we can make heathen events, heathen groups, more inclusive to neurodivergent people.
00:10:19 Dan: Yeah. So this is something that never really got looked at. But I mean, that’s understandable because general society’s understanding of these things is, is still really in its infancy. You know, if you go back to when we were first sort of putting together pagan and heathen events, the minority was pagan and heathen, you know, and any other minority within that was, you know, that’s something we’re going to have to address in the future. Um, now, you know, we’re established, we’re putting on bigger and bigger events, and now we need to be looking at, as you say, making them accessible to as many people as possible. I have no statistics for this, but just from personal observation, I think there are an awful lot of neurodivergent people within the heathen community. As I say, I’ve not done the research. I don’t have the statistics. But I would say, how should I word this? So I’m not committing to anything. Um, I would not be surprised if there were more neurodivergent people within the heathen community than neurotypical people. As I say, I can’t back that up, but it wouldn’t surprise me if that did turn out to be the case. You know, regardless of whether they’re a majority or a minority, we want to be catering for people and making the event as accessible for them as possible, as enjoyable for them as possible. Now, within our UK events here in the UK, um, we have started bringing some things in, so we now have our own community support team headed up by a community support officer who has other offices working for them in different, different parts of the community. So this doesn’t obviously just cover neurodivergence, it covers LGBT, it covers disability. It covers children and families. Really, really good team. Um, I’m slightly biased to how great the community support officer is because I’m married to her. Um, but, uh, but yeah, the community support team are doing great things. And specifically for neurodivergence, there’s some great stuff they’re doing. Um, so we now have our sensory tent at all the great heathen gatherings. This is a calm, quiet space that people can go to. Obviously, it’s not just for neurodivergent people. There’s not a sign on the door that says: No neurotypicals. Go away. It’s for everyone. Um, but it is something that neurodivergent people tend to ask for when we give feedback for events and stuff like that. So it’s somewhere that you can, you know, if you’re getting overwhelmed, you can get away from, you know, the big noise of the festival. It’s somewhere quiet. It’s also got things in there like comfy seating. It’s got colouring in, it’s got fidget toys. It’s got, you know, all those things that you can use to bring your sensory system back to where you want it to be. So that’s something. You know, other things that events can look at, you know, because obviously neurodivergence covers a whole range of things. As we’ve discussed, different people need different things. Some people might not want fidget toys at all. Some people might not want a quiet space. Some people might want to be in the noisy bit all the time, and that’s fine. But there’s always things that we can do. Things that can be really, really useful is giving out if there’s like a song or something that’s going to be sung as part of the ritual, publicize what the lyrics are ahead of time. And that’s not just useful to neurodivergent people. That’s obviously useful for people with hearing issues, blind people, all sorts of things like that. But for neurodivergent people, it can be really important. Like particularly for autistic people, if you don’t think you properly understand what you’re supposed to be doing, that can be really, really stressful. If you have the lyrics to the song, they’re in front of you, you know, this is what I’m supposed to be singing because for most neurotypical people, it’s fine just to mumble along and know what. It doesn’t really matter what the words are. But for autistic people generally, and these are all generalizations. Autistic people generally want to get it right, and they think that if they don’t get it right, it’s going to be terrible. So things like putting those lyrics out ahead of time, it can be physical sheets, it can be sent out online. Everyone’s got their phones these days, haven’t they? So things like that. Things like not insisting people do things from memory. I remember in some of the earlier AUK events when people were invoking gods at opening, we insisted that they weren’t allowed to have the words written down on a piece of paper. That’s not very inclusive. I know it looks better if people aren’t holding bits of paper. I get that the visuals are better, but you’re excluding some people from doing it because some people just will not put their name forward if they’re not allowed to read it off a bit of paper, because they’ll be so scared of getting it wrong and messing up in front of people and stuff like that. Just let people have the bit of paper if that’s what they want, you know? It’s simple things like that. Not insisting that everybody has to hold hands, because I remember again, back in the day at the early heathen things, it was always. Now it’s time that everybody in the circle has to hold hands. Well, for some people that’s a big sensory Nope. Um, so if people don’t want a hug, if people don’t want to touch, that’s okay. Nowhere in the Havamal does it say, you have to hold hands with people when you’re doing ritual. It’s not a thing. It’s never atteested, like the physical contact, never attested in heathen sources. So I don’t insist. If people want to do it like I’m a hugger. I love hugging like I will hug everyone. For me, that deep physical touch is a really important way of connecting. But for some people, hugging someone is the worst thing in the world. So don’t insist on it. Just, you know, let people do their Heathenry in a way that is comfortable for them. I think that’s kind of the main underlying thing. Um, I’ve talked a lot there. But yeah.
00:15:36 Frigga: For me, as with many things as an organization or as an individual is becoming aware of things and you can’t imply everything but you can with simple things like if the venue is indoors, that there, if possible, are two separate dining rooms because put a lot of people in one room and it is so incredibly noisy and overwhelming and overstimulating, and I become more aware of these things because I become aware of that it is a problem to me, at least as an organization. Ask things or somehow show that you are aware of it and working on it. That’s already makes a difference. Sleeping accommodation I mainly talk from the German ones I attended and earlier ones were always in the venue asleep indoors. The last couple of years I go there with two friends, so I really asked a room for the three of us, three neurodivergent people in one room, and it makes a hell of a difference because we know one another, and at least in the room, we, you know, can be our neurodivergent selves without masking or anything. And also what you said a quiet room. And don’t think that people have their sleeping space or can outdoors, because if it’s raining or if it’s really hot or, and maybe just people need to sit down and be in the company of other people in the quiet room. Lectures. I think we discussed that in the episodes on the Pagan Federation with Sarah Kerr. The length of the lectures breaks in between that the lecture. It’s perfectly fine if a lecture is an hour or more, but please have breaks after at least one half an hour can be 5 or 10 minutes. So often it’s done for. Yeah, but then people don’t come back. Yeah. The people who don’t come back might be not interested or just overwhelmed or whatever. But what I experience from heathen gatherings, people are mostly rather disciplined. So if you say there’s a ten minute break, they most likely will show up after ten minutes. But I want to to start doing and I still forget it’s not in my mind. So I have to put it on my list of what I need to explain. Before that I engage in a ritual is to people. If you need to stand up, it’s perfectly fine. If you can’t sit still, just walk around. If you need to stim, I have my fidget, you know, just mention these things. And most likely I mainly do my my with bigger groups. My Flame of Frith rituals which are not not that long, about 20, 25 minutes. But if we start mentioning these things, then more people become aware that these things can play a role and for the people who need it, they are acknowledged and seen. Because I think being inclusive and accessibility, as we can say every time, is an ongoing process.
00:18:28 Dan: Yeah. And something else that that I thought of, um, it sort of reminded me of when you were speaking there, Frigga, as well is, um, something as simple as trigger warnings on stuff. And I know, you know, trigger warnings can get a bad rep as this is just being oversensitive, but it’s really not. It’s just giving people information I’m thinking about. You know, I’m not saying you have to do a trigger warning on absolutely every element of everything, because you never will. You don’t know what people’s triggers are, but certainly within a UK we’ve started doing sort of bigger, showy rituals with lots of elements these days, which are great. They’re fantastic, really love them. But sometimes, you know, if there’s going to be things like an like a bang sound, you know, you don’t have to tell people when it is. It’s a balance. You don’t want to ruin the surprise. But if you just say to people during this ritual, there will be a loud drum sound at some point, then at least people know they’re prepared for it, and they know that if it happens, that’s part of the ritual. That’s not my tent blowing up. That’s not, you know, anything bad? Um, so little things like that, you know, if there’s going to be unexpected flashing lights, if there’s going to be loud noises, if you’re doing a talk and you’re going to talk about a particularly sensitive subject, just flag that up at the start. You know, give people the information and then it’s up to them to then choose what they do with it. They might say, right. Okay. I know there’s going to be this big bang in this ritual. Now I know that it’s there. I can deal with it. Or they might say, that’s too much for me. I’m going to take myself away. That’s, you know, that’s then their choice. You’ve armed them with the information. And I think that’s what a lot of this is. It’s not about saying, oh, well, we can’t do this because it will upset the neurodivergent people. It’s about balance. It’s about providing information and giving people the choice.
00:20:07 Frigga: Yes. The choice.
00:20:09 Jens: I have a personal opinion about trigger warnings. For me, they are the same as allergen warnings on food packaging. So when people say we don’t want to have any trigger warnings, it’s it’s terrible. It’s it’s whatever. It’s too woke. We don’t want this. But you don’t want to have allergen warnings on food packaging? And of course you can’t put everything on the warnings because people can be allergic to absolutely anything. And there is no way to include all that. But what you can do is make up a list. These are the 15 most common allergens. Put a warning out for them and I think we should have a similar list for where do we do trigger warnings. Yeah. So this covers suicide, obvious trigger warning for some people. Whereas this covers red roses. Okay. If that’s a trigger for someone: sorry.
00:21:00 Dan: Yeah that’s it. You can’t because literally anything could be a trigger. But yeah, I completely agree with what you’re saying there. And it is kind of akin to allergies because those same people who are saying, oh, we don’t want trigger warnings, it’s woke or whatever. I think they’d also not particularly like it if the ritual had to stop halfway through because someone was having a massive meltdown, which could have been avoided with a trigger warning, you know? So it’s about flow of the event just as much as everything else. So it benefits everyone.
00:21:26 Frigga: It’s getting used to it.
00:21:28 Dan: Yeah.
00:21:28 Frigga: Oh, this reminds me of a ritual we did for a conference of the Pagan Federation International in the Netherlands. And I suggested that the people who played a part in the ritual or were disabled in some kind of way. And one of the people: NO, and then people can be offensive. I think if we don’t mention it, they will not even notice it. And that was correct. And one of the most impressive moments of that ritual was somebody in a wheelchair signing a poem. And it was amazing what happened, because when he started that poem with the signing, you felt a shift in attention because people were focusing in a different way. And it was really there was. Yeah, it was amazing.
00:22:16 Jens: You mentioned the Pagan Federation and the episode with Sarah Kaya, and people listen into this episode because they‘re interested in the topic, we had another proposal there about doing meditation and circles so that you have the inner circle, which is quiet, and you tell the people in advance if you think you need to move during the meditation if you want to walk around. Feel free to do that. But we arrange ourselves on circles so that there is the most quiet in the inner circle and the most movement in the outer circle. And just pick your circle you want to do the meditation in. If I’m repeating that correctly, and it really stuck in my mind as a useful thing to do.
00:22:57 Frigga: I still think it is a wonderful example. And that brought me a thinking I have to do that beforehand in my rituals. Not that it will be three circles, but at least mentioning that it’s okay if you need to stim, or okay if you need to stand up and walk around, it’s perfectly fine because it’s I don’t know how still that is in minds of people, but I can remember in Denmark if when you were in a Blot, you were not allowed to leave the circle, otherwise you would break the circle. And I think that kind of thinking is still in some people’s minds, out of whatever way of thinking. But there too, I think we can. If we change the way you’re thinking, you don’t limit the circle to people standing there exactly in a circle. If you set up protection or whatever. Make it a bit bigger. So that. Because I like that what you do at the Ve at the great heathen gathering with with the the Frith chord.
00:23:56 Dan: Yeah. Yeah. That’s the boundary.
00:23:58 Frigga: I also use that in put it on the ground, maybe even beyond the people so that everybody is included. And you make it visible that the space can be bigger than just the circle. Yeah. So there are so many things to think about. Yeah, I also like it. It’s a challenge to oh that’s an oh we can think of that. What are indeed the most simple things we can start with.
00:24:21 Dan: Yeah. And there’s always more isn’t there. There’s always more that we can do. But, um, it’s just about trying, you know, trying our best, doing what we can. Um. And growing and learning.
00:24:31 Frigga: Exactly.
00:24:32 Jens: I heard you’re doing grounding workshops at Asatru UK, Dan?.
00:24:35 Dan: Then yes, thanks for reminding me on that one. Yeah, so we started doing these a couple of years ago, and now we have them at every event, pretty much every event. There’s probably some where we don’t, but all the big ones, all the great heathen gatherings. We do them at Yorvik, we tend to do them at winter nights as well. So that’s our sort of big events through the year, just to give people these tools, things to bring yourself down or bring yourself up, depending on, you know, which one where your nervous system needs to be. And a lot of the techniques that we teach people, you know, it’s not secret, hidden heathen knowledge. It’s um, a lot of them are taught by health services. They’re taught by psychiatrists. Some of them come from other religions originally. But you know what works, works. And, um, this is just about giving people those tools because, again, with these big, intense rituals, it’s better to be forearmed with some grounding techniques so that if you do get into this, you know, sort of state where you want to get yourself back down again, and getting into that state isn’t necessarily a problem. Sometimes that’s the point of the ritual. You know, the point of the ritual is to get into a heightened state. You know, if you’re trying to commune with the gods, you’re trying to go and directly speak to your ancestors. That needs a heightened state. You know, if you’re going to go and talk to Odin, you need to be on guard. Like, you know, but then you need the tool to get back down again afterwards and return to the here and now. And that’s where the grounding comes in. So there’s loads of different techniques. Lots of things work for different people. Some things don’t work for others. And again, you get this complexity in where actually sometimes people will have been taught a grounding technique during a particularly traumatic time, and then that grounding technique then becomes triggering for them. Um, so you’ve got to play everything by ear and, you know, it’s not a one size fits all thing, but if you give people as many tools as possible, hopefully they’ll find something that works for them. Um, and in addition to that, what we do when it’s a particularly intense one. So if it is sort of Seidhr work or anything like that, we’ll also have spotters in the crowd who are there if they see someone at the end of the ritual and they think that person’s not being able to ground themselves, they can go and offer help and stress on offer, not force help because again, that’s not okay. And I remember things like this did used to happen back in the day. Now it’s always an offer. Can I help you? Would you like some help with grounding? 99% of the time they’ll say yes, please. I’m completely overwhelmed. And then just having that second person to talk them through it, it might be the same techniques you’ve taught them earlier. It’s just they’re so heightened that they can’t think of it themselves. Just okay, let’s try this. Yeah. That’s that’s another another aspect of it.
00:26:59 Frigga: Yeah. I think a main thing always to mention is breathing, because you can do so much with breathing and telling people that what you say, find out yourself what works for you. Maybe use the technique so as they are offered, try it and then see what works and make the changes you need because it is not fixed. It is some basics which which are important to know about the practice. Please find a way that suits you.
00:27:29 Jens: Thank you Frigga. Earlier on you said in a ritual if someone needs to stim. I think that was not self-explanatory to everyone in our audience. So could you please just explain to us what stimming means?
00:27:43 Frigga: Stimming means the way I see it is that you you need a movement, and it can be all kind of movements to calm yourself down. For me, looking back now, I know that knitting is stimming for me. Yeah, we mentioned the fidget. There are now now all kind of small thingies, very colourful or very small. Sometimes they feel very different, which you can take with you. I do it now. For me, it’s also that I often need that, that I distract part of my brain to be more concentrated with another part of my brain, and stimming can help with that too. But I don’t need to sit still. I just can move. And maybe it’s only a tiny movement, but it’s somehow comforting to have that in my hand and to make the movements is that it can be from very small to to where big people need to, to jump up and down through the whole room or flapping with their hands. Or it can be all kind of things.
00:28:46 Dan: Yeah. It’s something that, you know, children sort of instinctively do, but unfortunately, I mean, I hopefully it’s changing the school systems now, but certainly when I was younger and it was probably the same for you guys, you know, if kids were fidgeting, they were told off and they were told not to do that. And then the teachers were surprised when the kid then couldn’t concentrate because what it does is Frigga says, is it if your brain’s going in three, normally more than three different directions, but let’s say three different directions, you’re trying to focus on one thing. If you can just have something to fidget with, with your fingers that can quiet one of those other voices, and then you’ve only got one to contend with against the thing that you’re trying to concentrate on. But, you know, say back in the day, it was just called fidgeting. And it was, again, something naughty kids did. But now we know that actually that’s helping not only those children to focus and learn, but you can carry that through into adulthood. These things don’t change. You know, I’m sat here right now. I’ve got a little toy which is made of books, like two bits of bicycle chain and two key rings, and they just flip inside of each other. And the whole time I’ve been talking to you guys, I’ve been fidgeting with this. You know, I don’t think anyone can tell on the recording. I don’t think that it’s in any way impacting how I’m focused. In fact. Well, it is impacting it’s impacting positively so that yeah, that’s how stimming helps.
00:30:00 Frigga: Likewise for me, I’m stimming constantly. It makes a hell of a difference. When I’m writing, I often use music so that part of my brain is distracted with the music. And that needs to be specific music. It’s not every type of music. I find a new CD not so long ago, which I’m using now, and I play it over and over and over again if I, I mean, the CD is maybe half an hour. If I’m behind the computer, I’m writing for three hours. That means the exact same CD is played over and over again so that it’s somewhere in the background. I’m knitting with a pattern which is a bit more complicated, which means that I need to concentrate because I think I’ve also this calculated. We know I am very lousy at working with numbers. I find out that I put on a podcast, music is not working then, but a podcast is working. Which actually means that I hear much more of the podcast. Otherwise that would be, you know, if I only would listen to a podcast, I would not hear half of it because a person says something and then I’m already goes in all kind of directions. So knitting, not too complicated pattern and listening to podcasts works in both ways. My knitting goes well and I hear way more of the podcast.
00:31:14 Jens: Thank you. Another word you use, which is a bit more self explanatory to others, but I think we should talk about that as well is masking. You said you were masking, what has that meant to you in the past?
00:31:27 Frigga: Masking is that you, if I put it in my words, is that you learn to behave in a neurotypical way. Learn to behave in a way that is expected from society. But that means that you hide or suppress, for example, you’re stimming, that kind of things. And now, looking back, I can see all kind of situations and realizing, okay, there I was masking and there I did that. It’s survival. Learn to behave in ways that is accepted by the people you were around with. And that is masking. That is mirroring behavior. So doing exactly what you see other people do, because that seems to be okay. Something I have been bitten myself over many, many, many times because I was thinking about. I respond in ways or I agree with things which are not the way who I am or not the way who I think so as I have now no spine. You know I’m lazy or weak. No I’m not. I was surviving.
00:32:35 Dan: Yeah. I think masking. You’ve hit it the nail on the head. It’s a it’s a survival tactic. Um, and some people might say, oh, well, if you can do it, if you can pretend to be neurotypical, why don’t you just do that? Well, there’s several problems. One is you’re not being your authentic self, so you’re going to feel like, you know, you’re not being genuine. But even if you can get past that, it is exhausting. It is absolutely exhausting having to second guess everything you do, having to think about everything. How is this going to be perceived with every single element? I mean, I for those who don’t know, amongst the listeners, I was in the military for 13 years, like as a person with ADHD in the military, you really have to wear a mask. I mean, supposedly our military here in the UK now are actually actively recruiting neurodivergent people and encouraging it. And I’ll see how that goes. I’m personally, I’m not so sure. Because, you know, you you can’t have a fidget toy on a submarine. You get absolutely ripped apart. But actually, why not? What would what what would be the harm? But because it’s not you know, that’s not regulation. That’s not what’s ordered. You have to do this thing in this way. And you know, certainly I’m for ADHD is but for autistic people as well, like you achieve the same result, but you achieve it in a different way. And sometimes you get better result, sometimes you get worse results, but you achieve the same results in, in a different way. In the military, you can’t do that. They don’t want they, you know, yes, they want the result, but they want the result achieved in the way that they prescribe you to do it. So you have to mask the entire time. And yeah, masking for for that sort of 13 year period I was in the Navy was, you know, I didn’t know that’s what I was doing at the time. As I say, I wasn’t diagnosed until later in life. I just thought I was tired and I thought that none of the systems made sense and that I knew how to do them better, but I wasn’t allowed to, um, and, you know, looking back, I’m not saying that my ways were better, but they would have been better for me. They would have been less draining for me, and I think I would have still got the same result. But that’s not what the military wants. And so sometimes, unfortunately, in today’s society, you do still have to mask. As a society, we should be trying to get to a position where people don’t have to do that, certainly to the extent they do now.
00:34:42 Frigga: Yeah. And AUDHD is very interesting because then you have the huge clash between ADHD and autism. And that’s something now I’ve finally and you I can’t explain what a relief it is to know that finally that I have these sides in me. That’s fine. Okay. I’m not crazy and I’m not stupid and I’m not whatever. I mean, the ADHD part in me, if something new shows up is, oh, exciting. Something new. Hooray! I like that. And just, you know, running to it towards it and jump into it. And at the same time, really, literally at the same time, my autistic part says, no, you can’t dive into that. First you have to to look into it, look up information or whatever. And then I am in between two millstones. Just, you know how to say that in English.
00:35:35 Dan: That works. That’s that’s still idiomatic in English.
00:35:39 Frigga: Yeah, I know the mills things are grinding and I’m in between that. I recognised a lot of ADHD that already I understood, but in that moment that I realized it’s not only autism, I’m also ADHD. And why did I not see that before? Because I have this horrible brain which is going in so many directions, but is that you need to understand things. It is if people say, oh, it’s that way. Yeah. Why is it it that way? And now finally, I get answers to so many questions I had with so long. And you, um, mentioned yourself being your authentic self. That is always a trigger to me because up until this day, being yourself, being your authentic self is something I don’t understand. Yeah, I have no clue. What does that mean? And now I’m beginning to realize that it has also to do with being neurodivergent. And I don’t know how much I suppressed, and I don’t know if I ever will figure out how much that is, because somehow it becomes second nature.
00:36:45 Dan: I think there’s an element there where it almost becomes it’s a trauma from the masking. You’ve had to do it for so long that you, you know, a lot of us have, you have you’ve done it for so long that you, you then, you know, as you kind of saying that you don’t know what’s you and what’s the mask. Um, and that’s difficult. That’s really difficult.
00:37:02 Frigga: Yeah. What’s the score from the trauma? Is the trauma. Because that’s what I mean. Reading that, if you go to get a diagnose that they first look into if there is no trauma. But yeah. What if the trauma is caused by being neurodivergent?
00:37:15 Dan: Yeah. And of course, you know, you can have both. Um, I mean, there’s some studies that suggest that people with ADHD are more predisposed to PTSD. So actually, you know, they can well, they can often be a link between them.
00:37:29 Frigga: Yeah, I do think and things happen in life. So it’s all intertwined. And I for myself because what’s best for me is to to look into it myself. Then I can do it in my own time, in my own space and in my way. Instead of that, I bump into, uh, disturbing transmitters, which I consider my psychiatrist and therapist to be. Yeah, that I don’t need to be capable of. Exactly. No, this is trauma, and this is not reversible. No, what is going on? Me and where can I find information? Which helps me to understand, because that is what I’m doing now. I started doing really is unmasking. And that is not easy.
00:38:12 Jens: It sounds kind of familiar to me because it is what queer people have done in the past in a very similar way as well. I hope it’s getting better. I hope they need to mask less. I’m afraid things might turn a different direction right now, but the last years we’ve seen an improvement there that queer people used to mask a lot, to appear not queer. And they’re also very much two stages of it, because the first point, being queer is realizing that you’re somehow different. Understanding that, and it happens at a very different age with different people. So I know quite a lot of men who discovered in their 30s and 40s or admitted to themselves that they’re gay, and they do quite a lot of masking before, but they don’t really understand it because it’s: I don’t want to be this way. I have to behave like this. And after the self-realization, it very much changes. But it’s is it safe to be openly query and whatever. Why? Or is it not? And if I consider it’s not safe, well, I try to pretend that I’m not queer. So it’s a very similar situation. Of course it’s different, but I think there are some strong analogies there.
00:39:17 Dan / Frigga: Yes.
00:39:18 Frigga: For me it is that I am in charge, that it is a choice. Instead of that it’s happening because for me, masking and shutdown are sometimes so related, and shutdown means that you can’t respond anymore. But in such moments, people don’t notice it because I respond in a social way. But inside I’m frozen and I know exactly what I need to say. With GPs and therapists, it happens. Now. I’m looking back so often that they said, are you‘re doing well? And I had to figure out myself that it wasn’t true, that I knew exactly what they wanted to hear me say. And I did that. They got the responses they want. They had no clue that I was masking or whatever, and they didn’t see me.
00:40:08 Jens: I just want to throw in a small anecdote here, because I really just feel like it. As I told you in the prechat, I didn’t join the army. It used to be obligatory in my age in Germany at that time, but there was a kind of option to do 15 months of social service isntead of 12 months of Army service. And I did it in well. How do you say that in an organisation which gave people with mainly schizophrenia a place to live? In many cases a place to live between hospital appointments. Some of them were very permanently there and some I accompanied to the doctor. And the first time I went with one of them, who was diagnosed chronically schizophrenic, but past the really obvious psychotic episode. So that’s a very specific state of mind. And he suddenly asked me, in a moment of complete clarity just before we entered the doctor’s practice. What day of the week is it today? And I told him, I thought, what an odd question and which date is today? And I thought, what an odd question. And we came to the doctors and the first two questions and doctor asked us what day of the week it is and what date is it today? And I sat there laughing silently into myself, okay, he knew that one so much that this would be coming. And the doctor ticked his box, knows the date, knows the weekday. Seems to be fine at the moment. Yeah, I think that’s very much the same situation you learn to work in these circumstances. In the past, while autism became, I think, publicly aware by the movie „Rain Man“ for a lot of people. And after that there was this idea, okay, there is this hardcore autism. And then there is something which has been called Asperger’s at that time, and that’s somehow like autism, but somehow not. Could you please give me an update on these categories?
00:42:02 Dan: You know, films like Rain Man? I mean, that was the most sort of obvious one that was was dealing with autism. But you also, you know, you’ve got sort of Forrest Gump and various films like that. Obviously with all films like that, they’re always going to portray a stereotype. Um, not everybody is like that. You know, not every autistic person can go and beat a casino, you know? Not every neurodivergent person has as interesting life as Forrest Gump. But I mean, in some ways, you know, they’re playing a part. They’re starting a conversation. They’re getting people to think about these things. Unfortunately, sometimes people can dwell on the negative side of the stereotype. And I also use it as a as a thing to bully people with as well, because that’s the thing, sadly. But there can be positives. On the other part, so this autism versus Asperger’s thing. So for a while, I think the reason people liked the diagnosis of Asperger’s is it was kind of put forward as, oh, this is autism, but you’re not stupid. And that was kind of how it was portrayed. Now, for most people in a modern understanding, it’s not a distinction that we make anymore. Um, autism is autism. And it’s also it’s not about being more or less autistic as well, because that’s the thing I hear people say. And that’s that’s again, not a thing. It’s just your autism manifests in different ways and presents differently. The main issue with using the term Asperger is Asperger’s syndrome is with Hans Asperger himself. So the guy who it’s named after, who did the initial research because of where, when and how that research was conducted. Um, so for listeners who don’t know and, you know, it’s perfectly understandable not to know, there might be people thinking, oh, I thought, you know, that was a perfectly good term to use. And that was the politically correct thing to say. Hans Asperger worked in Germany from the late 1920s into the 40s. Um, you can see where this is going. Um, he was conducting this research on autistic children. His main purpose was to see which of these children could be useful to the state, to go and do things like working in factories. And which of these children had no use to the state. And we’re talking about the state in 1930s and 40s Germany. We know exactly what they did with the people that they did not consider to be useful to the state. There is strong evidence, and some people try and refute it, but there’s pretty strong evidence that Hans Asperger was complicit in sending autistic children to be cruelly experimented on and then killed. You know, I can’t understand why anybody within the community would want to identify themselves with a man who would willingly have tortured you and put you to death. You know, there are some people that try and defend him and say, oh, we’re trying to save these children. While he wasn’t trying to save the ones that he exterminated, was he? So, um, yeah, it’s a term that I would never use myself. And if people were using it, I’d always try and educate them and say, you know, this is this is where this comes from. And, you know, if you read Asperger’s reports is not pleasant reading. You know, obviously it’s the language of its time. And, you know, language evolves constantly. And what’s the okay thing to say then? But, you know, it’s the recommendations he makes. It’s he doesn’t think of these people as human. He thinks of them as just something that can be a useful tool or can’t. Um, and I mean, I think the thing that really stood out for me with his cruelty is there was one little girl who was autistic girl, fantastic artist. He sent her for experimentation. She was eventually put to death. He continued to hang her artwork on the wall of his office, knowing what he’d done to her and that he’d had her killed. He had her painting up on the wall. So anybody that tries to defend him, I just point to that. That’s just horrific. So yeah, long story short, Asperger’s not a good dude. And therefore I’d be very, very cautious about using that term.
00:46:10 Frigga: Not changing subject directly, but it brings me to the next thing which I would like to address is language. And there is also, in a way you can compare it with LGBTQIA plus, where there’s also awareness of what language do you use, inclusive language. Do you use pronouns, or in a way that it is not male or female? For me, that applies to neurodivergence as well, and it’s partly in the expressions they use to point this out. I mean, I use autism or autism spectrum because I do think that the word spectrum adds something, but disorder I refuse to use because it is not disorder. And I realized that I use spectrum in slightly two different ways. One, it is that all the aspects of it are so they vary so much and not everybody has exactly the same aspects that has been mentioned before, but I also use it a bit in what it is doing to people. And I heard one young woman said in a video I saw on on Facebook, she also was talking about this, this mild and severe or high functioning and low functioning. Which is ableism. And I think it’s offensive. But she said, the way people need help can vary so much, and I think that was a nice way of expressing it. Some people need more. And then I go back. I wish that somebody in my youth would have been around and notice it in me and not treating people but supporting them. And I think the same way is with with ADHD, what you said in the pre chat then it’s not only disorder but there’s also deficit in it. Yeah I don’t consider it in that way. It is neurodivergent.
00:48:02 Dan: Yeah I think you’ve raised a really good point here Frigga because the language is really important. But the language is also constantly changing, and we do have to remember that when we’re looking back at stuff. If someone’s written something 20 years ago, we shouldn’t necessarily be pointing to it and say, oh, look, they’re not using the language of today. They’re a bigot. Well, no, because the language has evolved. Um, however, yeah, things like having deficit and disorder in the names of the conditions doesn’t help, but something that’s really frequently used. And I obviously this will be different in different languages as well. You know how this is in Dutch or German or French or Arabic or whatever will be will be different because, you know, the languages are constructed and work in different ways. But speaking for English, there’s this horrible tendency the media think it’s right to use what’s called person first language. So this is where you’d say person with autism or person living with ADHD. I saw this just last week. There was a headline. The police were bringing out some sort of bracelets for people living with neurodiversity. I mean, there’s so many things wrong with that because one neurodiversity means everyone, so it’s for everyone then. Great. Fantastic. But obviously it’s not. They mean neurodivergence, but there’s people living with. And at first hearing that might sound like, oh well that’s not what’s the problem there. Why is this an issue? Well, because it separates the person from their neurodivergence. So it’s saying they’re a person with this like they’re carrying it around in a bag. They are not it. Whereas with your neuro type that is you. That’s your brain. You know, most of us, we think that our mind is what we are, aren’t we? Our body is something that we, you know, we have and we travel around in. But our our mind, our brain, our thinking, that’s us. So you can’t take you can’t separate it. And I think another really good way, you know, we’ve we’ve used the comparison with the LGBTQIA community quite a lot here. If I was to start talking about men experiencing homosexuality, that suddenly sounds very problematic, doesn’t it? People living with femaleness these years. This isn’t great. Is it so? Yeah. If people could try and get away from using this person first language for neurodivergent, that would be fantastic.
00:50:14 Frigga: Yeah, I am autistic, I am dyslexic, I am AUDHD when it comes to my my chronic illness. Then I say I have a chronic illness.
00:50:23 Dan: Exactly. Yeah, because that’s not what defines you.
00:50:27 Frigga: Exactly. Well, we can make another episode about that.
00:50:33 Dan: Yeah. I mean, obviously you can’t get away from it. It is part of who you are. But it’s not, you know? This is a heathen podcast. Let’s think about this spiritually. You know, it’s about what is the core of of what is us. And like I said earlier, I wouldn’t take the medication for my ADHD because it would stop me being me.
00:50:48 Frigga: I have been experimenting with ADHD medication, luckily to have a lot of friends on the spectrum as well because I wanted to try it myself and not with, you know, somebody breathing in the back of my neck so I could do it in my time, in my space. Yes, I want to go to my GP and talk about it that I really would love some medication. I’ve also looked into it because I will not go into into it, but I’m still flabbergasted what it does for me. And not that I feel suddenly healthy or without pain or anything, but it makes a difference as I looked into it. If we use it for fibromyalgia, some people we’re talking about on Reddit. Indeed there are people experimented with different outcomes. Some people say it doesn’t do anything for me, and others say it’s a bit what it’s doing for me, but for me, with my very foggy brains, to be able to concentrate more is a huge difference.
00:51:45 Dan: Yeah, and I think that’s it. There’s no right or wrong answer. You know, I’ve said that I don’t want the medication, that I judge anybody else that does this, you know, it’s what works for you.
00:51:54 Frigga: It’s so personally if it’s helped you, please do it. And there are various medications. Yeah, indeed. There is no right or wrong. It’s what’s works for you.
00:52:04 Jens: Okay. Are we good to kind of move to part two of this recording and get into a bit more heathen areas again?
00:52:12: Frigga Yeah, please.
00:52:14 Dan: Yeah.
00:52:16 Jens: This was part one of our episode on neuro divergence. In part two, Dan will tell us about his research looking into different sources with a neurodivergence lens. Thank you for listening. Until then, you’ll find us on our usual websites. Bye bye.