The Seizure Turnaround
We explore the topic of functional seizures through conversations with people who provide an unfiltered record of their experience.
The Seizure Turnaround
The Autistic lens: Functional seizures' missing key
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What happens when you finally see yourself reflected on screen? This week, Lana sits down with Audrey to discuss her life-changing 2023 autism diagnosis after watching Love on the Spectrum. Audrey opens up about her experience with functional seizures/FND and how specific trauma-linked cues—from family conflict to certain tones of voice—became seizure triggers. We also dive into why therapies like Eye Movement Desensitization and Reprocessing (EMDR) and Brainspotting offered the breakthrough that traditional talk therapy couldn't.
FNDWhatNow? Support Group, South Africa
https://www.fndwhatnow.com/support-group
Neurolog App
Love on the Spectrum is an award-winning, docu-reality series—originally Australian, now also a U.S. Netflix show—that follows autistic people navigating the complexities of dating, intimacy, and relationships.
Netflix - Love on the Spectrum
Presented by Clinical Neuropsychologist and researcher, Dr Lana Higson.
This podcast is for informational and educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Welcome to the Seizure Turnaround, where we explore the topic of functional seizures through conversations with people who provide an unfiltered record of their experience. Joining us today from South Africa is Audrey Bart, who spent years navigating the world of functional seizures. That is, until 2023, when a single television programme provided the mirror she didn't know she was looking for, and the pieces finally started to fall into place. In this episode, we're diving into the autistic lens and why Audrey's recovery from functional seizures required a new radical understanding of her own neurodivergence. Welcome to the seizure turnaround, Audrey.
Speaker 3Thank you so much, Lana, for having me on your podcast.
Speaker 4Tell us about what you were doing. How did this all begin for you?
Speaker 3I knew always there's something going on with me, but couldn't quite place it. And I've always been sickly. In 2014, I had to resign from work as a biomedical technologist. What were your symptoms? I always had infections, throat infections, UTIs, bowel issues. And so I needed longer resting time in particular, flat on my back, resting time, not doing anything else. So you can imagine how difficult that was because it's basically me by myself in my own headspace. And obviously that is where the worry comes in. Am I ever gonna get better? Why is my body failing me? I'm not gonna have a life. It was really, really tough in the beginning.
Speaker 4So already before these seizures developed, you weren't feeling very well. Yes.
Speaker 3Yes. We couldn't definitively say what is wrong with me. I think that was the draining part, the not knowing. And I've been doing psychotherapy, normal talk therapy for 15 years before that. Oh wow. It's been helpful, but also not really addressing the root cause, basically.
Speaker 4We see this very commonly, actually. So a lot of people have had some psychological input, whether it's psychology or counseling, for many years before we see them. So it's interesting, isn't it? Yeah. May I ask, why were you having all of that psychological therapy for years before the onset of the seizures?
Speaker 3I had a lot of childhood trauma issues and just working through all of that and not having that internal reference or internal compass to know social interactions, social cues, and all of that. Because I was never taught those things. So it was harder being in social settings, what to do, what to expect, what to say. And my brain would overcompensate by analyzing everything. What is meant when the person says this? How do I respond? Why does the tone sound like they're scolding me? And not knowing that those things also link back to some of the trauma melodies. It may have been the way somebody said something, the tone of the voice then, and somehow somebody in the present is having a similar what my brain conceived as the same tone of voice back then. So that flare-up response within my body. But obviously, I didn't understand all of that.
Speaker 4I understand that you received a diagnosis of autism quite late in your life. I was diagnosed in 2023 with autism. How did that come about that you did receive the diagnosis?
Speaker 3I knew there was something different. I know that from young already. And I started watching the program Love on the Spectrum. That's a wonderful program, isn't it? Yes. And my mind went quiet. There was no processing. What is meant by this word? How do I respond? Nothing of that sort. And then my daughter said, Mum, I think you could be on the spectrum. And at that point, I decided to seek a diagnosis. Wow. So we had a center in South Africa, the Neurodiversity Center. That's where I had my diagnosis. And we started working through that.
Speaker 4This is really interesting that you would hear somebody's voice and it would remind you of a voice maybe that was associated with trauma in the past, but your brain wasn't able to sort of delineate or separate. Can you talk to us a bit more about what that's like?
Speaker 3The trauma that was inflicted on me was the things people used to say to me. You are a delinquent, you are uh stupid, um, you're retarded. And I couldn't place those things. Now I understand why people said certain things. I can understand the clumsiness I had, I can understand all the infections, I can understand why I had struggles with social interaction, and it just all came together for me.
Speaker 4When you had your first seizure, do you remember that day or what happened? Can you tell us? Where were you?
Speaker 3I don't remember a specific day that it happened. All I know that it started out very violently at home. I was mostly at home because I I spent at that point long periods of time on bed rest. Right. And so understanding it now, the trauma from the childhood experiences, that emotional processing, those were the big triggers for some of my seizures. Can you explain to us a little bit more about that? Things like because I struggled as a child to be accepted, and now something in the present comes up. Maybe it's in a TV show that I'm watching, and then all of a sudden I'm having a seizure, sitting with my husband or my family watching a show. But obviously, I couldn't connect those things.
Speaker 4That's so interesting because we have a lot of patients that say, Well, I wasn't doing anything, I was just watching TV, so I don't know why I'm having seizures. But I I have had a couple of clients who, you know, even if they're watching a cartoon, and these are people who are autistic, have explained it to me that they get really involved and over-empathize with the character. And if the character is feeling something, then they sort of go along with that. Can you explain a bit more what it's like for you? Because that's very interesting to hear that again.
Speaker 3Yes, in my case, it's got a lot to do with what people said to me back then and what it felt like in my body, and whatever comes up in present day. And so EMDR and in later years, brain spotting became my go-to set of people. So EMDR in a non-invasive way works with the bodily sensation you're experiencing in that moment. But it's linking all that bits of memory from the trauma together to form a complete memory for you to process, to find language with, and then obviously work through it by making it non-invasive or non-threatening for your brain to register, okay, this is the full memory, and so it's okay, that was back then, it doesn't have relevance now, and so automatically that body sensation also becomes less triggering, and so I've worked through maybe one trauma memory, but now the next time when it happens, I can recognize that because there's that internal compass.
Speaker 4EMDR is highly structured, isn't it? Did you find the predictability of EMDR comforting?
Speaker 3The fact that it's not recalling all that bits and pieces of the trauma memory makes it less invasive. Right. You're not really loving it, you're working on the body sensation you're feeling now in the present, and you're linking it back. So that is helpful. Also, my processing, if there is no internal flow, somebody recently mentioned to me you sound like a rapper when you say your internal flow. So it has to work with my internal flow. So when it comes to a session, then I would say, okay, we can do the EMDR, but then maybe for this session, I need you to move your fingers. For the other session, it might be. I know the one example is I told my counselor that okay, because she had lots of copper rings, and I would ask her to switch them around so that it jolles with my inner flow. So it's all about also establishing that trust and safety with my counselor. What works for both of us? Do they have to sit closer to me or farther away when I have a seizure in therapy? And I believe people have difficulty with that as well, that when they have seizures in doctors' rooms, what to do, and doctors feeling creeped out about it or not prepared. And so the safety that we created was that if I'm not responsive, she would come and place her hand, one hand on my forehead, one hand on my chest, and just gently guide me through that, which brought me back, and encouraging the slow deep breaths. The other position was one on my forehead and one in my neck as well. Uh, or she would tap. And so I've shown that to my husband. So when I have a seizure, he would tap in the rhythm of the heartbeat, wherever it's comfortable on my body. Right. So anywhere on your body? Um, so it's it would mostly be my arms and my legs. In act for autism, they use it on the sternum, but then it's more about slowing the rhythm down. Then my body is able to kick in and to breathe again.
Speaker 4And so is he tapping at the rate of your heartbeat or his heartbeat?
Speaker 3So a normal heartbeat, not too fast, yeah. Okay. Um, and then slow it down, and that obviously slows my heart rate down, but it also kicks in then about breathing, the slow deep breaths until I can breathe for myself. So those are the little things I could do for myself and pick up. My autistic strength or my strength is lifelong learning. And so I'm able to find the resources quickly and take the good bits and the needed bits, and then interpret it and apply it and work with it. So that has helped me a great deal as well.
Speaker 4Do you think that you didn't find all of that psychological therapy helpful because of your autism and the EMDR and brain spotting are much more helpful because it's through the body and not so much talking?
Speaker 3Yes, I'm very much intuitive. I can't explain it. I just know, I feel it. And with the talk therapy, I think it can be harsh, it can be it feels almost like you are reprimanded in certain terminology. So it's very much the words that's being said that could be triggering for me. But I always try and find signs to prove things. When I read the book, The Body Keeps the Score from Dr. Bessel van der Kolk. He mentioned in there at the VA, he sat with the veterans and they would talk about their trauma in circles. And that tipped for me because that is what it felt like for me. It's going around in circles, there's no resolution to it.
Speaker 4Right.
Speaker 3Um, and that made me think about how do we then process trauma?
Speaker 4When did you start the EMDR and brain spotting? How many seizures would you have been having at that time?
Speaker 3So in a week, I may have had like five seizures or so, but then it's also a very long one. What do you call long in your case? Half an hour, 45 minutes. But that's also where my husband could pinpoint the seizures that I'm having. He kept note of how long they last, how my body was thrashing, that kind of thing, which became data and information to work with afterwards. And at that point, I also realized that it's important to note what happens just before the onset of one, during how long they last, and then my recovery after, because that became a map.
Speaker 4And what are those physical sensations for you that usually lead to one of your seizures or used to lead to one of your seizures?
Speaker 3Yes. So I would just feel it's coming on. I can feel a sensation in my head. It's almost like a cold sensation on the top of my head. There are times where I would get smells, then I know I need to go and lay down because the seizure is happening. My body would start feeling to freeze from my feet up. Then there are times where I could realize that sometimes there's an emotional trigger, and emotional, I don't mean we overly acting because we're women, and uh, you know, I'm saying that from a brain functioning process. What kind of emotions for you, Audrey? So usually it would be something linked to my trauma, maybe something somebody said, it would be financial status that used to be a big thing for me until I could define my relationship with money and get that understanding. So now that's not so much of a stressor anymore, right? Also, if there is what I call a tricky person, so somebody who would be triggering for me or a situation that's triggering for me. Um, so those are my emotional stresses, and my seizures would be longer.
Speaker 4Can you give us an example maybe of a triggering person or a triggering situation?
Speaker 3Okay, so we have a tricky person in the family, and it's because the person is overriding my authority at times, but also not acknowledging me as a person and treating me like a child. Right. And so when I know we're going to have interaction with family, and that person is there, or the person just shows up at our house, automatically that's a seizure. Now, obviously, I have different ways of interpreting what I can do in order to minimize the tricky person. We only spend half an hour there, then it's not as long. And then I prepare myself for okay, when the person says X, Y, Z, I know now with the self-confidence that I've gained, with my assertiveness that I've gained, and also my own right to say, listen, I appreciate your viewpoint, but unfortunately that is not holding true for me. So just that empowering ways of restructuring and reframing my outlook towards that. But it's also very draining. So I know that when I come home, I will have a seizure because my body has to get rid of all those sensations and feelings.
Speaker 4Right. And those interactions are obviously very cognitively demanding and draining for you. Yes.
Speaker 3And Dr. Peter Levine's work speaks a lot about the body has to shake, and so that is kind of helpful to understand that because we can become very ashamed of the seizure, and sometimes you do whet yourself or drool or something like that. So it's very shameful experience. And if we can understand that the emotional processing is not meaning that you are hysterical, but it's a natural response to whatever the tiger was or the trauma for the body then to just shake it all out.
Speaker 4So, what other tips and tricks, Audrey, have you found helpful? You mentioned the tapping.
Speaker 3I think it's important to note your patterns. So the before, during, and after, how long your seizure lasts will help you tremendously in understanding your seizures, but also finding the tools that you require to help yourself through that. The tapping helps a lot. Other tips: the brain needs oxygen or a balance between oxygen, nitrogen, CO2. It also needs glucose. So after a seizure, it's helpful for me to have a warm cup of tea with one sugar and then a peanut butter jam sandwich because that compensates for the glucose with some protein and some fat. I haven't heard that before. Interesting. Yes, I don't share it that often. I've only shared it with two other people, and the one person confirmed that it helped them as well. So I felt kind of chuffed about it because I run my own clinical trials at home.
Speaker 4I love that. Audrey, at what point in your treatment did you notice that the frequency of seizures started to drop? Was it a gradual decline in the frequency, or did it feel to you like there was sort of a sudden switch flipped for any specific reason?
Speaker 3It definitely dropped over time, and also how I processed a lot of my trauma and finding the language to express that trauma, which I couldn't do before. And so just getting through those things impacted the frequency of my seizures, and again, working on myself, my self-confidence, being assertive, having the right to say, but listen, this is concerning my health. I feel that you are not acknowledging me. You have a right to say, listen, I appreciate your comment, but I don't think it fits for me. Those are valuable things because it's giving you permission to say no, where before that you didn't have that capacity because you came from a victim mindset, and I'm not meaning this in a negative way, it's just that it feels very raw for you to respond to. But now somebody's giving you a permission to say, but you can say this because you are your own authority, you don't have to accept now, it's coming from an elder or an older person. So there's this dynamic of you're not supposed to confront older people, right?
Speaker 4Right. So it sounds like a lot of the work that you have found very useful is around communication. Yes.
Speaker 3Communication, that it works both ways, and relationships. What are those dynamics? What do you expect from a relationship? How do you compromise? How do you work both parties on that relationship? And if there's tricky people and toxic situations, is it best to go no contact?
Speaker 4And do you think that through EMDR and brain spotting that you've become more aware of those subtle physical cues like changes in breathing or muscle tension that used to lead to your full seizures?
Speaker 3Yes, for sure. And I think my mind goes to the EMDR, the bilateral stimulation with the fingers. My eyes do that automatically sometimes. And then I would pick up okay, what is happening? And because I do a lot of compassionate self talk, which wasn't easy in the beginning at all, I am now just in that motion of okay, Audrey, what's really happening for you? What's coming up? And this is where um my other passion is what. Watching two crime or crime shows because it's that whole process of plotting this case and the processes involved that helps train my mind to find okay, what's happening? What evidence do we have? How do we move forward? How do we get to the end result? What can I do about that? Is it a good ending or not a good ending? Does it need further work? You know, does it become a cold case that you have to pick up every year?
Speaker 4Interesting. I am also really interested in this intersection of autism and functional disorders. In autism, there are those repetitive movements as well, like stimming or behavioural freezes, which can sometimes be, I suppose, a little bit confusing to differentiate between what is attributed to autism and what is attributed to the functional disorder. Or sometimes those behavioural freezes or stimming can actually evolve into a functional seizure, especially if people have trouble communicating their state of awareness. Did you ever have autistic meltdowns as a kid? Or can you distinguish between an autistic meltdown and a seizure event? Do they feel like different expressions of the same internal overload?
Speaker 3There's definitely that commonality with the internal overload. And I've noticed, and when I used to look back, I would jump up and down to just get rid of what I'm feeling. From childhood already, that's the need that I had to do, but wasn't allowed to.
Speaker 1Right.
Speaker 3With the F ND and the functional seizures that sometimes that came up for me, I just need to jump up and down to get it out of me. And I've noticed that it's not always easy to see that overlap between FND and autism. But things that I notice that I do do is the if I cannot do that jump quick enough or go lay down to just have the seizure, then that builds a lot of anger and frustration. So then that frustration, that anger is something that I'm still working on because it goes from zero to a hundred in a split second. Then it's rage, and I feel the need to fight. And so I'm ready to punch a wall, I need to break something. So that is one aspect that that switch that is very still intense for me and that I need some more processing on. But having said that, I think I can now identify that it's because when I'm hyper focused and I need to switch activity, that makes me quite angry because I still have to have a few processes in between before I can switch. And so that speaks a lot to oh, but you are slow, you are this, you are that, and so just noticing okay, it is fine, but you need to switch. So what do I put the in-between steps to switch? So I may have to do a game in between, okay, or I may have to just journal a little bit, so then the anger is not so intense anymore. So that difficulty in shifting, shifting, yeah, from hyper focus on one task and now having to do something completely different. Also, I have to identify certain dates or certain activities. My family knows Fridays and weekends or some days over the weekend is my cleaning day. So I don't schedule anything. You cannot have a conversation with me when I'm cleaning either, because I don't have the emotional capacity to understand where you're coming from, to discern what you are saying because I'm focused on the cleaning.
Speaker 4I've never met anybody else that's had EMDR and brain spotting for their seizures going at the same time. I mean, not that you do them at the same time, but you have either EMDR or brain spotting. Is that right? Yes. What's the main difference between them and what do you feel you get out of each one? Or why do you have both of them, I suppose?
Speaker 3Brain spotting is like one up from EMDR for me. But starting out with EMDR, it is not so invasive. So I don't relive that whole trauma experience, but is the bodily sensations that we are working with linked to all that fragments of the trauma and bringing it together and processing this whole experience with the bodily sensation so that it's less threatening, and next time it comes up, I won't have a reaction to it. I can process it normally. Right. EMDR is almost like you know, when they show you these adverts with the washing powder lifting the dirt out from the woven fabric. Yes. So EMDR does that for me in my brain, it lifts that dirt. The dirt is the trauma fragments. I intend to explain things in terms of pictures or in songs. Anyway, with brain spotting, the technique is somewhat different, but again, it's that bilateral stimulation. So there would be a pointer, and you would look at the pointer, but my third of burst would be a certain distance away from me, and we establish what is safe for me. And then I can choose between two pointers. The one looks like a thin knitting needle with the back part, the knob on the top, and the other one is a bit thicker. So I have that option.
SpeakerOkay.
Speaker 3And it's all about what feels right with my internal flow again. And so she would point it in the center to the left and to the right, whichever area that I find that that pointer is comfortable for me. Then that's where we keep it. So for most of my processing, she would have to keep it on the right, almost like in a northeasterly direction. And then I would look at that for a little while and we will process what's happening inside of me, the sensations I'm feeling. Sometimes I talk to her about that while looking at it. Sometimes I would have headphones with the bilateral stimulation music. And the therapy was designed by Dr. David Grand. And the understanding is that where we look has an impact on how we feel. And for me personally, I will feel the need that I need a brain spotting session as opposed to EMDR. The brain spotting is like, you know, when you do ASMR where there's velcro pullling, for me, brain spotting is lifting all that dirt out of the nooks and crannies and folds of the brain with Velcro. And it makes my head feel nice. That's that's how I can interpret brain spotting compared to EMDR.
Speaker 4That's wonderful that you find both of those so complementary and so helpful. I mean, obviously, there's a lot more research for EMDR than brain spotting, which I think still remains quite controversial. So it's really nice to hear from you that you're finding that very helpful for your seizures. Yes. You have recovered significantly, haven't you? Yes. Where are your seizures now, say, compared to when you first started having them?
Speaker 3So I don't have frequent seizures. It's just when I'm exhausted, then I would have those jerks at bedtime. Sometimes I may have processed, say, trauma A. I've dealt with most of the different parts of trauma A to dep and so on. So for the most part, I don't get a seizure. But now maybe there's one tiny element to trauma A that still needs processing. Okay. And then that will trigger a seizure, but it won't be intense shaking and jerking. And I'm also able to quickly realize what the tiger was. But again, it's very specialized, it's very nuanced in finding what that little tigger is. So my presentation now would just be my head flipping back and my eyes rolling. That is my seizure, and I won't be able to respond, but I'm aware.
Speaker 4It's a lot more manageable now than it used to be.
Speaker 3Yeah, and I'm very thankful for having EMDR and brain spotting because it obviously helped a great deal with this complex PTSD. And that was the major component.
Speaker 4Would you just tell us what work you do over there in South Africa? I believe that you you started a foundation or tell us what you actually did.
Speaker 3Yeah, we started a support group for people with FND. We operate under the South African Depression and Anxiety Group. I've trained as a support group leader with them. Oh nice. That started in 2022 simply because I was dismissed by a neurologist and I was fed up or feeling fed up. That has now grown into a nonprofit company in South Africa called FND what Now because they give you the diagnosis, oh, it's F N D and they leave you hanging, and it's like what now? So the name is very symbolic.
Speaker 4We'll put a link to your organization in the show notes. What sort of things can you help people with if they contact you, or what sort of things do you do?
Speaker 3We have a weekly support group and it's mostly women, but we've also now launched a men's group because we find that men will join, but then they would slowly show up less and less and then not come all together. So I felt the need that maybe we should create a safe space just for men where they can bond and drive their own group based on what men need within such spaces. So we launched it in January. Wonderful. What we normally do is we ask you to send us an email, give us a call or WhatsApp if you're somebody with FND and need support. We do an introductory video call just to assess your needs, whether you need more one-on-one therapy, where you can go, and then also what your needs are when you join our support groups. And this year we have been invited to attend the South African Clinical Neuropsychological Association conference to share more about FND in South Africa. And we celebrate FND Day every year on the 7th of May in South Africa.
Speaker 4Well, that sounds like you're doing wonderful work there, Audrey. Is there anything that we haven't talked about that you think would be really important for people who have just been diagnosed?
Speaker 3I would say to you, is it's okay. It is overwhelming to experience these symptoms, but also know that there's help out there. You're not alone. And help is just a matter of reaching out when you are ready, when you feel you can work with your symptoms. And if somebody can video record you while you have your seizures, that is also quite beneficial for when you see doctors. Yes, yes. The other thing I would like to mention is that in terms of resources, if you go to our website, you will see that there's an app called Neurolog that is available for people with F and D because it was designed by somebody with FND. Okay. And you log your symptoms using emojis, and that will give you a very good report in terms of what kind of symptoms you experience, maybe temperature conditions for that day, pain levels, etc. You'll find that certain of those things cluster together, and then you understand your symptoms a little better, and you understand your patterns a little better. So therefore, you can help yourself by understanding those. Is that a free resource, Audrey?
Speaker 4That's a free resource, yes. Oh, that's wonderful. We'll put a link to that as well in the show notes if people are interested in downloading that app. Yeah, great. Well, thank you so much for sharing your story and for all of this wonderful work that you're doing over there in South Africa. And it sounds like even though you're not working, that you've been able to channel your energy and find a purpose, a new purpose, and you're helping a lot of people. So we wish you all the best and thanks so much for your time.
Speaker 3Thank you so much, Lana, for making these resources available to people, your platform and sharing our work as well. It's through you that the word gets out there. So thank you so much for the work you do as well. Thanks, Audrey.
Speaker 4Thanks for listening to this episode of the Seizure Turnaround. We were joined by Audrey Bart. Next time, we sit down with Stephen Painter, FND advocate and founder of Neurolog. Stephen is using his own journey with FND to build a smarter way to track and understand symptoms. Don't miss this deep dive into the technology that may help us to better understand functional seizures. Until then, stay well.