Episode 262: My guest this week is Stacie Fanelli and we talk all the about intersection of neurodiversity and eating disorders. We cover what neurodivergence is, helpful accommodations in recovery, screening for neurodivergence, masking and animal-assited therapy.
Stacie received her Bachelor’s in Social Work from Syracuse University and Master’s in Social Work from Rutgers University before starting her career as a therapist in Oregon in 2017 working in community mental health and eventually with eating disorders. She is trained in trauma-informed care and incorporates aspects of acceptance and commitment therapy, internal family systems, and dialectical behavior therapy into her style. She has worked in treatment centers at all levels of care and began private practice in early 2021, diving into her interest in the very common intersection of eating disorders and neurodivergence.
Using a neurodiversity-affirming approach and social-justice lens, Stacie supports teen and adult clients in self-discovery and identity formation and creates a safe, non-judgmental space to un-mask. She works with clients through grief, joy, and everything in between by using interpersonal tools like humour, lived experience, collaboration, and validation to model healthy, authentic relationships. Stacie proudly works from a Health at Every Size® and anti-diet framework.
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Chris Sandel: Welcome to Episode 262 of Real Health Radio. You can find the show notes and the links talked about as part of this episode at www.seven-health.com/262.
Hey, everyone. Welcome back to another episode of Real Health Radio. I’m your host, Chris Sandel. I’m a nutritionist who specialises in recovery from disordered eating and eating disorders and really just helping anyone who has a messy relationship with food and body and exercise.
Today on the show, it’s a guest interview, and my guest today is Stacie Fanelli. Stacie is a clinical therapist and received her bachelor’s in social work from Syracuse University and master’s in social work from Rutgers University before starting her career as a therapist working in community mental health and eventually with eating disorders. She is trained in trauma-informed care and incorporates aspects of acceptance and commitment therapy, internal family systems, and dialectical behavioural therapy into her style.
She’s worked in treatment centres at all levels of care and began private practice in early 2021, diving into her interest in the very common intersection of eating disorders and neurodivergence. Using a neurodiversity-affirming approach and social justice lens, Stacie supports teens and adults in self-discovery and identity formation and creates a safe, non-judgmental space to unmask. She works with clients through grief, joy, and everything in between by using interpersonal skills like humour, lived experience, collaboration, and validation to model healthy, authentic relationships. Stacie proudly works from a Health at Every Size and anti-diet framework.
I discovered Stacie’s work fairly recently through the RDs for Neurodiversity site. I also heard her on the Body Justice Podcast. Neurodiversity is something that is coming up a lot more with clients I work with and is a topic I’ve wanted to cover for a while, so it was great to have a chance to talk with her in such detail about this, considering she has both personal and clinical experience.
As part of the conversation, we talk about Stacie’s early childhood and how this impacted her relationship with food and her own eating disorder and what recovery and that process has looked like. We talk about what neurodivergence is, which is much broader than most people think it is, and how it is connected, or the connection between neurodivergence and eating disorders. We chat about accommodations that can be made in recovery for someone who is neurodivergent, and whether this is how intuitive eating is applied or what happens at treatment centres or even in the outpatient setting.
We cover the lack of screening in treatment for neurodiversity and how Stacie and I approach this with clients. Stacie explains about masking, what this is and the impact it causes, and she shares a great exercise for how to discover your various masks. We also talk about animal-assisted therapy and how Stacie uses Duncan, her therapy dog, to assist clients.
This is a topic I’ve been wanting to cover for ages, and I really loved this conversation. I think there’s going to be a lot of new information in here for you to learn from. I will be back at the end with a suggestion, but for now, let’s get on with the show. Here is my conversation with Stacie Fanelli.
Hey, Stacie. Welcome to Real Health Radio. Thanks for chatting with me today.
Stacie Fanelli: Thanks for having me.
Chris Sandel: I think a lot of the conversation today is going to be around neurodivergence and eating disorders, which is an area that you know a lot about and speak a lot about and work with clients on. It’s an area I haven’t really covered in a huge amount of detail on the podcast before, so I’m really excited to get to cover it with you.
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Just as a starting place, do you want to give listeners a bit of background on yourself? Who you are, what you do, what training you’ve done, that kind of thing?
Stacie Fanelli: Sure. I’m a social worker/therapist and I work at two outpatient practices as a therapist specialising in the intersection of eating disorders and neurodivergence in Southern California. I am specifically myself an ADHDer. I’m sure at some point we’ll talk a little bit more about my own neurodivergence, but I identify as neurodivergent and I hold a bunch of different identities along with my occupational experience working at all levels of care with eating disorders. I have white privilege, cis, thin, middle class privilege, and then marginalised identities as ace, neurodivergent.
My trainings, my experience as a social worker was very heavily based in social justice focused on systems, groups, communities, and how they all affect each other. I’ve relied heavily on my lived experience and digging into my interests to access informal training because the formal ones that I’ve had never really resonated with me. So a lot of reading and consulting with colleagues. That’s where I learned that a lot of my ideas were radical and not always necessarily acceptable, sometimes in a good way, sometimes not.
Chris Sandel: Nice. I’m definitely someone who does a lot of their own educating and reading books and listening to things, so I’m similar to you in that way.
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If you think back to yourself as a child, what was food like in your household? What was your relationship with food like as a kid?
Stacie Fanelli: I grew up in an odd living situation, so I kind of had almost three separate food cultures, actually. As a child of divorced parents and then my dad remarried, I lived these different lives where I went between food being not such a big deal, more about the experience of gathering together and eating dinner and having a game show on in the background and it was fun and interactive – looking back, it was very ADHD of me. But yeah, the food was secondary at my dad’s house.
My great-uncle was really proud of his Italian heritage, we’d do pasta dinners every Sunday and he made me these fancy after-school snacks of salami and tomatoes. It was the joke in his family that his food was gross, which I don’t really remember agreeing with, but I definitely took on that narrative, which led to a lot of bargaining to clean my plate and take one more bite and being guilted about starving kids in other countries and all of that.
But then at my mother’s house, where I’d go every other weekend, there was not really any cooking at all because of her neurodivergence, her executive dysfunction. A lot of eating out, a lot of frozen meals. My dad would judge her for that and would body shame her. So there was definitely an association that developed early on.
And then my dad remarried, so suddenly I had this Puerto Rican stepfamily where food was a really big deal. So there was cultural appreciation there that there wasn’t before. Rice and beans in particular was something I looked forward to so much, and I got to be the taste-tester for. I had a pretty tumultuous relationship with my stepmother herself, but when she cooked for me, that made everything better. And I had an appetite that my stepsiblings didn’t, so I got to be kind of the golden child when it came to food. It was a really interesting tie-in to relational stuff. It was never really about the food.
Chris Sandel: What about your mum’s relationship with food? You said she didn’t really cook and you ate out a lot. How was her relationship with food?
Stacie Fanelli: Really interestingly, fine. Unremarkable. I don’t remember any negative comments about her body, except for from my dad. I have no recollection of any anxiety or stress when she would eat. She seemed to really enjoy food. I don’t even think I paid much attention to it, whereas my dad – well, both my parents were in larger bodies, so it was cool to see my mother be in a larger body and be absolutely fine with it in our culture.
But my father experienced a lot of fatphobia, a lot of oppression based on his weight. He was diabetic and would do a lot of going in and out of caring about his health, so he would do these new commitments to “I’m going to do this and this different” and it usually had to do with food. He’s always been a binge eater my entire life – to the extent that when he got bariatric surgery, he continued to binge-eat and had serious medical complications. So that was interesting. He was always under scrutiny in our family because of his diabetes. He’d bring a sugar-free dessert to Thanksgiving and say, “See? I’m compliant. I care about my health” and then go home and binge on a carton of ice cream. But we never really talked about it. It was a secret thing between me and him.
Chris Sandel: Wow. How do you think that impacted your relationship with food or the way you thought about food?
Stacie Fanelli: There’s some shame there, for sure. I think that it had a big part in the eating disorder, especially because I also had a tumultuous relationship with him. Sort of trying to be different, like “Look at me, I’m not like my dad. I’m going to beat this curse. I can set myself apart from him. I can be smaller than him.” That was a hard thing to unpack in my recovery because it’s a hard thing to look at yourself and see fatphobia.
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Chris Sandel: When did your dieting, or at least you trying to do something different with your food, start to occur? At what age were you?
Stacie Fanelli: I’ve thought about that a lot over the years, and it’s hard to identify a specific point. I think in adolescence for sure. I have vivid memories of savouring 100-calorie packs of coffee cake very specifically during summers when I was very under-stimulated. I didn’t do anything when I was off from school, so I would make projects and goals for myself, and I think around the same time I was weighed at the nurse’s office in middle school. So there was definitely a connection there.
But I don’t remember having the intention to diet until high school, where I had moved to a new city for high school and was feeling disconnected. It was challenging to make friends, and the school was very image-focussed. I even had a teacher who would sell chocolate bars as a fundraiser and would make comments like, “Better you than me eating that!” and talking about how many grams of sugar she was allowed to eat on her new diet and almost showing it to me as if it was a lesson she was teaching.
I think at that point was when it became more of a formal “I’m going to commit to losing weight here”, and I remember feeling very guilty about eating. At some point I started actively engaging in eating disorder behaviours, but sort of toeing the line of ‘this is socially acceptable’ and ‘this is pathological’.
Chris Sandel: How long did it take for that shift to occur, where it was more run-of-the-mill dieting to ‘this has turned into something more sinister’?
Stacie Fanelli: I think I identified the start of my eating disorder at age 20, so a couple years into college, because that was when it was formally diagnosed. But for sure it was brewing. There was a really quick turn into ‘my life is consumed by this’ that was associated with a lot of mental health struggles, adjusting to college, and not fitting in and a lot of social struggles, relationship chaos, and stuff like that. I think I also failed a class and I was like, “I’m not good at anything. I have nowhere to go.” There’s a lot of clichés in eating disorders about what purpose they serve, and a lot of them have truth to them, like control and communication. I think mine served all of those purposes at some point.
So yeah, I actually went to treatment for my mental health, and they happened to have an eating disorder programme tied to it. My eating disorder got worse as my mental health otherwise got better, or so I thought and so they thought. So that was the beginning of my descent into several years in and out of treatment.
Chris Sandel: When you first were diagnosed with the eating disorder, were you in agreement with the diagnosis? You were like, “No, this definitely isn’t what’s going on”? How did you receive that?
Stacie Fanelli: That’s a great question. I spent a little time in denial because I wanted to keep it. I didn’t want them to take it away from me. I think I also just – it was normalised. But there was also so much validation in hearing that people thought I had an eating disorder. The whole ‘sick enough’ thing. I think without knowing that language or that that was a cliché in eating disorders, and I didn’t really know I wanted to be sick enough, I was like, “Okay, there’s language here that describes what I’m experiencing, and other people experience this too, and that feels like I’m part of something.” So the eating disorder became even more of a refuge than it was before because there was community there.
Chris Sandel: Community in a real sense, where you were going online and talking to other people with other eating disorders? Or you were going to support groups and it was like “I’ve found my people”? What was the community aspect?
Stacie Fanelli: That and treatment. Something that’s not talked about enough in the eating disorder treatment system that we have right now is attachment trauma and the way that eating disorder treatment fosters that. And I don’t necessarily have suggestions – well, I have some suggestions. [laughs] But it’s hard to know how to transform that, necessarily, because people who have insecure attachment are more likely to develop eating disorders, but also eating disorder treatment might be the first healthy, secure attachment that somebody experiences. So then when that abruptly ends by a matter of insurance or you get better, it makes you not really want to get better. That was what happened to me for a while.
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Chris Sandel: You said you bounced around with your recovery. Was it inpatient and then outpatient? What did it look like?
Stacie Fanelli: It was all levels of care at different points, and that happened throughout college. I took a semester off from college to do inpatient treatment, and that was like the big climax of my eating disorder, and then it sort of just stayed stagnant for a while and I stayed in a state of quasi-recovery of “This is my life, this is my identity. I’m always working toward a healthier relationship with food, but that is taking up all of my brain space and everything else is secondary.” Which to an extent, now, as a therapist, I want for my clients. I want them to put effort into it and to care about it. But I think in that process, sometimes it made it hard to just be a college student and to be passionate about other things.
What helped with that for me was changing my major. When I came back from my leave of absence, I had worked with a lot of therapists, and it was my first emotional intelligence awakening. I hadn’t ever talked about or understood mental health before. Previously, I had been a journalism major, and it was a very difficult, cutthroat field that actually I think was damaging to my ego, and I noticed myself – it was very forced. I didn’t want to be doing it, but I felt like I had to keep up. It was kind of a rat race.
When I discovered the field of social work, a lot changed for me. There was meaning and purpose there, and that met a lot of the needs that my eating disorder had previously met.
Chris Sandel: So that change in major helps further your recovery because you’re like, “Now I’m finding this other way to scratch this itch that previously my eating disorder was fulfilling.”
Stacie Fanelli: Yeah. In treatment, I found that I was really good at the intellectual side of therapy and of understanding emotions and communication. Not always so great at putting it into practice, but it was something that felt very intuitive to me and that I really wanted to get better at, and I could see being – I was forming my identity around recovery instead of my eating disorder, which was helpful in some ways and unhelpful in others.
But I thought, “Here’s an actual way that I could make this a career and I’m good at it, and it’s not as forced as journalism was.” It was the first thing that felt like it fit, and the idea of having gone through this terrible experience, but there being meaning attached to it – that I was doing this for a reason – actually became a motivator for recovery for me for years.
Chris Sandel: It’s interesting, just to come back to what you said about recovery then becoming your identity or really taking up so much of your time and focus. I agree with you in terms of you want that to be the case, or you want clients to really be prioritising their recovery, but there does need to be this boundary. There does need to be this separation of “I am not recovery. I am this individual that is going through recovery, and I have all of these other aspects of my life, I have all of these other qualities, all of these other strengths”, etc., because otherwise it can become all-consuming.
And then at the same time, it’s like, “What if I get past this? What is then left for me after this?” So you then can get stuck in the “I can’t really move on from this because otherwise, then where am I left?”
Stacie Fanelli: Yes, and that was terrifying and it kept me stuck. Who wants uncertainty, right? Like “At least I know this thing.”
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Chris Sandel: What about Health at Every Size and the anti-diet approach? How much was that part of your recovery and talked about in the treatment or the different places you were at?
Stacie Fanelli: One wants to think that I learned about it in treatment, right? [laughs] But actually, it was probably in the middle of the worst of my eating disorder, the year that I came back to college from treatment and was looking for that community that I had had in treatment. My campus newspaper published a story about a body-positive club called SHAPES. I think it stood for – it was such a stretch – Students Helping Acquire Positive Esteem or something.
It was run by a student whose own eating disorder recovery was profiled in the newspaper, and the advisor to the club was Harriet Brown, who I think you’ve spoken to on your podcast before. She was a journalism professor at my school who’s very involved in Health at Every Size. So I went to a talk that she gave in the city and sort of admired her work from afar and got so interested and enamoured with the idea that had formed at a young age with my dad’s diabetes of ‘health is in fact your size’ to just the premise that it might not be, and that there was a whole big community of people out there that supported that idea that it wasn’t just wishful thinking.
I ended up becoming pretty involved in that club, organising a scale smash, doing a lot of the beginning of advocacy, but still struggling myself tremendously, which felt pretty shameful to me. I had this closeted eating disorder and I was supposed to be a role model, a voice on a college campus for those who were struggling. I think I put that on myself; nobody ever said “You must be a role model.” I think that parallels sometimes what it’s like to be a therapist in recovery, too.
I ended up joining the Association for Size Diversity and Health, still very much struggling myself. They own the HAES trademark, and I joined their outreach committee and got to lean on my involvement with this organisation as a reminder that my eating disorder thoughts and my fatphobia was not aligned with my values, and to really challenge it, and to put the voices of those most marginalised ahead of my own and to de-centre myself. All these social justice values I was learning about in my classes – this wasn’t being taught about in my classes, but kind of combining the two and being like, wait a second, I think weight stigma might be a social justice issue.
Chris Sandel: Yeah. I know you said you’re finding this information, you’re part of these scale smashes and all of this, and there’s this guilt or shame about “Why can’t I be on board with this more?” or “Why do I get this intellectually but am not able to take it on board for myself in terms of how I live?” – how much do you think discovering Health at Every Size was crucial or not for your recovery? What difference did it make by making that discovery?
Stacie Fanelli: I think it was necessary. I talked before about the meaning that it gave me to be working toward something that was greater than myself, I think. This was something that took me out of the identity that treatment and being a recovering person gave me, and instead put me in something that could be permanent and sustainable and helpful and useful, and not just to me. Being an ally and an advocate could become my identity in a way that was healthy. I don’t think I’ve ever found anything else like that that could replace my eating disorder in the way that I needed it.
And I thought before as a therapist about, how come advocacy isn’t just the way out for all of my clients? It’s because of the diversity of human values. Different people – values and talents. I’ve always been a helper, I think in part because of people-pleasing and relational trauma and stuff, so it’s not just born out of I have a good heart and good for me. [laughs]
But I think some people are just like, “I’m so tired of educating” and depending on what identities they hold. That’s totally valid. The more one has to educate throughout their life and be a voice against stigma, the more exhausted they’re going to be, the less capacity they’re going to have to do that as a side project when it’s not for their own survival. So I understand why that is something that worked for me that doesn’t necessarily work for everyone.
Chris Sandel: This is actually a conversation I often have with clients around this. They’re thinking that once they get over the eating disorder, they are then someone who is going to have to be always speaking up about this, and they have to set up an eating disorder account on Instagram so they can tell everyone about it. I’m like, no, you don’t have to do that. If you want to do that, by all means you can do that, but this is a very personal thing that you’ve gone through, and if you get over it and you’re like, “I just want to leave this thing behind because it has already taken up so much of my life”, and advocacy is not something that is where your calling is at, that is completely okay.
Stacie Fanelli: Absolutely.
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Chris Sandel: What about, then, the neurodivergence piece? I know I started this conversation by saying this is an area you specialise in. I want to see how this comes into your story. Maybe just as a starting point, can you explain what neurodivergence is?
Stacie Fanelli: Sure. Neurodivergence is actually a lot of times – and I made this mistake, too, in the beginning of coming to understand my own identity – the term is mistaken as meaning just ADHD and autism. But there’s actually a very enormous umbrella of differently wired brains that fall under the category.
It’s quite literally diverging from neurotypicality, which is its own questioned definition – what is neurotypical? But to be more specific, every mental health, every mental illness diagnosis falls under the category of neurodivergent, including anxiety and depression, which are these more socially acceptable, less stigmatised neurotypes. So we’ve got a neurotypical neurotype and then you have a neurodivergent neurotype, which could be any diagnosis, but also, neurodiversity as a movement tries to get away from diagnostics because they’re so pathologizing. In order to explain neurodivergence to people, I will use the language of disorders and DSM codes and whatnot to explain it, but I think the language is ever-evolving, and it’s not my favourite.
So in addition to mental health, there’s learning disorders. I suppose ‘differences’ is the ideal language. Processing. Anything that causes a person to experience the world in a different way, whether that’s how they process information, sensory-wise, relationally, or learning and language. It’s also traumatic brain injuries or epilepsy. It’s medical, mental health, and neuropsychological, neurodevelopmental. If there is something that makes your brain different, that makes you think and experience the world differently, you are neurodivergent.
But not everyone identifies with that label, and I think part of that is because we have misconceptions about it, including that it is ADHD and autism and that’s it.
Chris Sandel: Just your synopsis there of what it is encompasses so much more than I was aware of. I think, as you say, maybe there’s a lot of people who don’t want to take that label on board because neurodivergent can sound pejorative or is used in a pejorative way. It’s not just a neutral term.
Stacie Fanelli: Yeah. Actually, it’s funny you mention that; I saw a TikTok the other day where somebody was talking about being called a neurominority and how that didn’t register with them because they were a white cis male, and they were like, “I don’t want to seem like I’m experiencing oppression when I have all these privileges. And even though I am, I don’t want to take up space in that way, so neurodivergent feels right to me.”
Finding the right language to describe yourself is an important part of healthy identity development in anyone. But I find in my clinical work that that seems to be more true for neurodivergent folks and for myself than for anyone – this sense of feeling like we know – the language exists to describe our experiences. Because we’re so used to people not getting them, and I think that’s often the role that diagnoses play.
We’re not necessarily pathologizing ourselves. We hear a lot of people say things like, “Don’t say that about yourself. You’re not depressed” or “You don’t have a disorder”, and they think they’re being empowering or positive, but it’s not that we want to pathologize ourselves; it’s that we want to have a nice clean box to put ourselves in that makes sense. We want things to make sense when they happened in the past. And I’m all for that.
Chris Sandel: It’s interesting when you say we have the language to describe it, because I would imagine that there are parts that are very difficult to describe, where it feels ineffable. Even run-of-the-mill stuff. Like if someone says to me, “How do you know when you’re hungry?”, there are certain things I can point towards, but there are other things where I’m like, I don’t know, there’s just this feeling that I have come to associate with hunger that I label as hunger. And there must be so many aspects in terms of how information is processed, how you hear someone’s voice and then that translates into something in your mind, or whatever.
All of these different aspects that are going to be connected to neurodivergence, one is going to be very difficult in being able to describe. Some of it is going to be easy to describe, but some of it is going to be so difficult to describe – and not even able to describe because there’s no point of contrast. I’ve only lived with my brain, so I don’t know what it’s like to live with some other brain, to know that there is this difference in this thing, because how am I meant to know that?
Stacie Fanelli: Yeah, exactly. You’re not taught in school about brain differences, let alone the very complex language used to describe them. We don’t even learn about neuro psych, parts of the brain, etc., what your brain really does, until high school, if then.
If you’re just a kid, comparing yourself to your peers, which is the way that we know what ‘normal’ is – that’s how identity development works, unfortunately. The good comes with the bad in comparison. It has a function. We experience the world differently, and we can tell because of the way our peers respond to things, or even just as simple as like “They’re performing better on a test than me and I hold a lot of shame about that” might indicate neurodivergence. But if I don’t have a language for that, I might just internalise “I’m stupid” or “I’m bad” or whatever it is, because I’m trying to figure out who I am.
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Chris Sandel: Talk a little about your neurodivergence. You said at the top you’re an ADHDer. Talk more about that, or if there’s other neurodivergence.
Stacie Fanelli: I’m a late diagnosed ADHDer, actually, by which I mean after childhood. It was not identified in the way that I think a lot of schools attempt to identify neurodivergence, whether it be giftedness or a need for special education or just some – the intent is to meet people’s educational needs, but there’s so much more benefit to identifying neurodivergence early. But that was not the case for me, I think because I performed pretty average to above average in school.
It was actually in grad school, after having taken a psychopathology class and reading through the DSM, seeing the criteria for ADHD, and being like, “Huh, interesting, I maybe relate to some of that”, and then the following semester overhearing some classmates talking about the 15-page paper that was due the next day and how they were probably just going to sit tonight and bang out the whole thing. I was like, that’s a thing you can do? Why can you do that? [laughs] Which is kind of ironic because a lot of ADHDers actually can do that because of hyperfocus.
Chris Sandel: I was thinking the same thing. When you need to focus or when you have a special interest like “I’m going to focus on this thing”, there can be an insane amount of focus. When the whole building is on fire. [laughs]
Stacie Fanelli: Absolutely. So it’s funny that that was the turning point for me where I was like, wait, I should look into that. The thing is, I can do that, but not reliably. Not to the point where I can say that’s my plan. I can only do it in panic. I just became overtaken with this jealousy and ‘you need to get to the bottom of this’. I definitely had the privilege – being in grad school at the time I think made myself more credible, so I was able to just say to my psychiatrist, “Hey, I think I have ADHD” and they were like, “Oh yeah, probably. Sounds good. Here’s some meds.” Which is definitely not the standard, not the typical pattern that people go through. I’ve been with clients jumping through so many hoops, and there’s a lot of problems within the system that prevent people from getting diagnoses and getting medication if they want it. That’s a whole other story.
But I had this ‘aha’ moment with ADHD of “Oh my gosh, this explains so much from throughout my entire life”, going through all these memories of “Maybe this is why my fourth-grade teacher sat down with me and was like, ‘You’re not turning in your homework. Let’s go through your planner and organise things.’” I was like, how did nobody – it was so obvious, when you look back at it in retrospect. But because I was pretty average, nobody had concerns. But I also wasn’t identified as gifted. I fit right in the middle, and I was quiet and I was a people-pleaser. I wasn’t inconveniencing people. I mean, I was inconveniencing my family, but there was never this idea of “Stacie might be struggling. Let’s get her help.” It was just like, “You’re an annoying kid.”
Chris Sandel: Is it also the fact that ADHD is also very associated with boys as opposed to women?
Stacie Fanelli: Absolutely.
Chris Sandel: This is something I’ve found definitely with autism. Everyone knows or everyone thinks of the stereotypical boy with autism, but not with the young girls, so it gets so missed.
Stacie Fanelli: Yeah. I became very good at compensating for what was natural for me at an early age, and I didn’t know I was doing it. I think part of that is just what is expected from gender socialisation, what it means to be a girl versus a boy. I was performing that well, and what was hiding underneath was part of my identity that I didn’t discover for 20+ years.
But now I also, in doing the work that I’m doing – I specifically really enjoyed working with ADHD right off the bat because I relate so much to my fellow ADHDers, but then there’s also a tremendous overlap with autism, so I started seeing a lot of autistic clients, and more recently, maybe within the past six months or so, I’ve really started to identify a lot of traits in myself as well. So that’s something I’m currently exploring.
I don’t have the same ‘aha’ moment I did with ADHD with autism, where I’m like “That is definitely it. That explains everything.” I think part of that is because I already know I have ADHD, and there’s a lot of things I see in myself that might also be explained by ADHD. So I’m working internally on this fear I have of taking up space in a community that’s not mine, but as a friend recently told me, taking up space doesn’t mean taking away space from someone else. So I’m trying to take that into my exploration.
For me, those traits look like an affinity for patterns, looking for patterns, feeling a strong attachment to my systems that I have, having a very strict, correct way to do things – not compulsively or ritualistically, but finding comfort in predictability. And also alexithymia, which is a disconnection between your somatic sensations and your emotions, and what a lot of therapists will call ‘intellectualising’ as the main way that I process emotions.
Chris Sandel: It’s interesting that you list out all of those things; so many of those are traits within an eating disorder.
Stacie Fanelli: I think you’re onto something there.
Chris Sandel: At what point were you in recovery when you discovered this? How much of your recovery or not was then starting to explore how your neurodivergence was part of your eating disorder?
Stacie Fanelli: That’s a great question. This wasn’t identified until a few years after my last time in treatment, and I was in pretty sustained recovery, and I remember feeling a lot of frustration that it was missed for all the time that I spent in treatment, and wondering, is part of the reason why I kept doing these treatments and nothing was really sticking or lasting because I was continuing to perform? I was focussed on being compliant with the way that they told me recovery was supposed to work rather than adapting it for the way that would work for me
So there was a grief process that had to happen there – a forgiving of my providers, an understanding of what people don’t understand, and then starting to come to my own conclusions, doing the work that they didn’t do for me in discovering and researching and understanding how the intersection worked and why things like intuitive eating that never really stuck for me didn’t stick
Taking the blame off of myself was very healing, and I didn’t realise up until that point that I did put the blame on myself.
00:41:19
Chris Sandel: With intuitive eating, just because you mentioned it there, what would make intuitive eating work? Are there certain accommodations that could be made so that intuitive eating could work, or if you look at the 10 principles, saying ‘this one needs to be changed somewhat so that it would still work’? What would your thoughts be on how intuitive eating could or couldn’t work?
Stacie Fanelli: I think I often start with intuitive eating with my clients as almost like the skeleton structure of how we’re going to do recovery, and then we almost always make some sort of adaptation to it. That’s based first of all on differences in interoceptive awareness. Interoception is one of your senses that plays a role in how and if and to what extent you feel sensations in your body, including hunger and fullness and temperature and whether you have to go to the bathroom and all that stuff.
When we look at the very simplistic definition of intuitive eating that does not capture what it is, which is hunger/fullness and sensing those things, paying attention to them – “Eat when you’re hungry, stop when you’re full” – it doesn’t fit. It doesn’t work because neurodivergent people tend to have either hyper- or hyposensitivity to interoceptive input, meaning that we either don’t feel hunger or fullness until it’s extreme, or we feel it very, very slightly and intensely. It’s hard to know how to respond to that when it comes to eating.
So adapting that then looks like really leaning into practical hunger instead of depending on interoception. Meaning that if I know that I’m going to be busy for the next three hours, I’m not going to wait to get hungry; I’m going to eat ahead of time, whether I’m hungry or not – kind of the way that a lot of what we think of as early recovery works, but on a permanent basis, and working on accepting that as ‘that’s just how we eat’. That’s just how we have to eat to accommodate our bodies, and that is intuitive. That is respecting the way our bodies operate.
And then also paying attention to other signs of hunger that aren’t just ‘my stomach is rumbling’, which, if somebody is alexithymic, can also be challenging. If we’re looking at irritability, for instance, and I’m alexithymic, I might not recognise that I’m irritable, and I have to wait for somebody to point out, “Hey, are you hangry or something?” So more external cues, like “Everyone around me is eating” or the clock, “Five hours have passed. Shoot, I know that I’m supposed to eat every three hours, so now I’m going to have a little extra.” So being very logical with it.
That’s where working with a dietitian can be really beneficial because we’re still, in eating disorder recovery, dealing with diet culture and all of the myths about food that need to be debunked as well.
I think the thing that I most often advocate for with intuitive eating and my clients is not sticking to these ‘10 easy steps’, even though there’s such a draw in having it laid out very neatly and nicely.
I think the other thing besides interoception, too, that is important is that eating as a stim, or self-stimulation, is a really common thing in neurodivergence. For those unfamiliar, stimming is – fidgeting is an example of it. We deal with different stimulation thresholds; whether we run more overstimulated or under-stimulated, we’re always trying to come back to our centre and be in this ideal window of stimulation. I always have a Slinky handy for myself.
But a lot of people also stim to eat, and that might be classified as emotional eating, and I do think that emotional eating is over-pathologized within intuitive eating in a lot of places. I think legalizing that is a huge, important adaptation that I would add.
Chris Sandel: Nice. Just hearing you talk about that, I already take a lot of – what you’re saying is the approach that I’m taking with clients. Like, “I like intuitive eating, I like the principles of intuitive eating, but we need to figure out how this works for you.” If eating a meal with the TV on is actually a better way for you to eat, then eat with the TV on. There is no rule that says that that is the thing you shouldn’t be doing. If that works for you, that’s great.
And then in terms of hunger, I’m like, let’s figure out all the telltale signs that you have that are hunger. If I reflect on myself, the point at which I’ve had a growling stomach, I’m like two hours past the point of when I should’ve eaten. I’ve got so many signs and symptoms before that that the physical symptoms in my stomach and my digestive region are not ones that I normally rely on because they’re way past the fact. So with clients, it’s like, let’s figure out what these things are for you – and also how easily or not easily they are interrupted.
If the tiniest amount of stress means that you are unable to notice any kind of feedback in terms of your hunger signals, then we need to work out other ways for you to remind yourself to eat because this is not going to be a dependable feedback mechanism. And maybe with time it gets better because you’re doing other things around self-care, because other aspects of your health are improving or whatever, but let’s pay attention and see if that is true.
So yeah, I’m very much like, I like what intuitive eating talks about, but we’ve got to be remembering the person that we have in front of us as opposed to ‘these are the rules and this is what you’ve got to do’.
Stacie Fanelli: Absolutely. Also, when you mentioned screens it made me think about what we talked about before with hyperfocus and ADHD. When we have adequate stimulation in a different activity, eating can really feel like a chore. I often work with teens who will go much longer than they should without eating because they’re playing a really captivating video game. So can we accommodate that person by bringing them food to eat, by letting them get to a stopping point in their game? Potentially if it’s a show or something that can be done while they’re eating, can we allow for that?
Like you said with screens, mindfulness doesn’t just have to be sitting in silence and appreciating the scent and the texture of food. In fact, the quality of the food can be very overwhelming and overstimulating to people and make it feel even less tolerable. So it’s a really important accommodation that we consider people’s stimulation needs – both decreasing things that are overstimulating, which might mean wearing sunglasses at a table that’s in a bright place – or adding stimulation when a person is under-stimulated to make eating feel more tolerable and more interesting sometimes.
Chris Sandel: Yeah, and also having that be feedback as well to the state that someone’s in, in terms of at some points they might need to be wearing sunglasses and at other points they will not. Or at some points they might want to eat where they’re doing a puzzle or something at the same time, and at other points they’re not. And this can be then related to, what is the state that someone is in at the moment?
Again, my use of intuitive eating is very much like, this is a really great framework for awareness. How do we continue to build up your awareness so that you have a better understanding of how you process things, the things that tend to support you, the things that tend to pull you down, etc.? Just noticing, is it at every meal that there is this feeling that “I want to have this thing by my side” or “I want to be doing this thing while I’m eating”? There’s this day that that didn’t happen? That’s interesting, let’s explore that.
Stacie Fanelli: Yeah, I love the idea of information that we’re getting from every meal. Maybe indefinitely, too, because every day, every setting is going to feel different, and that’s fine. Our goal always has to be to accommodate ourselves.
00:50:37
Chris Sandel: I know you talked there specifically about intuitive eating; what would you say more broadly if there’s other things that come up when you think about either treatment centres in terms of inpatient, but even just outpatient as well? What accommodations could be made for helping people who are neurodivergent?
Stacie Fanelli: I would say one of my biggest gripes – man, I could go on all day about those, but probably the emphasis that is currently placed on compliance in treatment centres. The policies that they’re asking neurodivergent people to comply with aren’t built for them.
Actually, so many neurodivergent people are traumatised by compliance-based therapies, past and present, and sometimes treatment centres as they exist, philosophies and policies, just recreate those same therapies. They’re very behaviour-based, and that’s the problem. Not that they’re behaviour-based, but they’re focussed on rewards and consequences, and that’s not really a sustainable way to create change for somebody.
Chris Sandel: I would argue that’s not a very sustainable way to change everyone. Not just neurodivergent types.
Stacie Fanelli: Absolutely. I work with some neurodivergent people whose chief presenting problem is they are recovering from the trauma of compliance-based therapies, whether that’s ABA (applied behaviour analysis) or it’s a treatment setting where they had basically felt coerced or manipulated into change and had a carrot dangled in front of them. Having worked in treatment centres, I saw a lot of “If you eat your meal plan today, you can have coffee for breakfast tomorrow.”
So withholding privileges in order to give them out later. It’s infantilizing and it takes away people’s autonomy. Autonomy is a really big issue for neurodivergent folks because it is so frequently taken from us in medical settings, in therapies, and in the way people are parented, too. I think handing people back autonomy is a really big change that needs to happen for neurodivergent people in treatment settings. Like collaboration. Things that should be happening anyway as far as treatment planning. They’re asking their clients to be flexible, so they need to be as well.
But then also, what is the content of treatment? Are we working on executive functioning if that is something that is impairing a person’s ability to eat? Not to change it, not to just hand you better executive functioning, because that would be trying to make a neurodivergent person neurotypical, but are we working on learning to accommodate the executive functioning that a person has?
For example, a dietitian helping somebody figure out how to Door Dash a meal rather than trying to get them to perform cooking, which is something they’re never going to do outside of –
Chris Sandel: I’ve never heard the word ‘Door Dash’. What is Door Dash?
Stacie Fanelli: Oh, it’s like Uber Eats, a food delivery kind of thing.
Chris Sandel: Okay, sure.
Stacie Fanelli: So if that’s the thing that’s accessible to a person on their average day, based on the capacity that they have – and this goes for chronic illness, too – then why are we trying to get them to peel a potato if that’s not something that is typically going to feel accessible to them? Recovery doesn’t have to include cooking. That’s a big thing that gets pushed, I think a little bit too much.
I think meal planning around convenience foods is a really important accommodation. Learning to meet sensory needs while acquiring food, while grocery shopping, while preparing it in the kitchen, while eating, while cleaning up – those each might have their own different set of accommodations that a person needs to learn for themselves as they go, and treatment is actually a great place for that to happen if it’s set up.
For example, fidget tools, changes in seating. Perhaps a person is hearing a refrigerator hum and that is making it intolerable to eat. We don’t have to be as rigid as a lot of programmes are set up to be right now – this idea of “Just tolerate the distress, and if we teach you enough skills to be able to tolerate the distress, everything will be fine.” That’s where we create sensory trauma for people.
Chris Sandel: Yeah. I think there are things that as part of recovery, you do need to go through, “This was anxiety-provoking, and I did it enough times and then it got better, and I’m now no longer afraid of eating the pizza” or whatever it is. But if there’s other things that are very much linked to how your sensory processing is, one, those things aren’t necessarily going to get better, and two, if there’s an accommodation that can be made so that now that thing isn’t bothering the person, why would that accommodation not be made?
Stacie Fanelli: Right. And if a person is used to being compliant, that’s how they’ve survived their whole life – or perhaps they don’t know they’re neurodivergent yet – they might not have the language to say, “This is a sensory thing.” That’s even assuming that their treatment team would listen and respect that. But if they don’t know, they’re going to take the narrative that they’re being handed, which is “Oh, you’re afraid of that food, so you just need to eat it and you won’t be afraid anymore”, and it’s going to make it worse.
So I think clinicians really have the duty of exploring that, of being the ones to introduce it. “Hey, might this be a thing for you?” But I think the problem with that is that clinicians are too worried about ‘enabling’ the eating disorder. That gets in the way more than it helps anything. We overestimate the potential helpfulness of dangling a carrot in front of people and then we underestimate the power of intrinsic motivation. We don’t trust our clients. The thing is, if it turns out that they are in denial and the eating disorder is in fact running the show, they’ll get there when they get there.
Chris Sandel: Definitely. Again, it comes back to, as you talked about, the collaboration piece. When you’re talking about you don’t have to be able to cook to recover, or you don’t need to do your own food prep, that’s a conversation you have with someone. It’s like, “Okay, you’re currently not cooking. Is this something you would like to improve? Is this something that you would like to have change as part of your recovery?” And if at that point they’re like, “No, not really” – great, let’s work out what this could look like with that thing not changing.
Stacie Fanelli: Yes. That’s something I actually would’ve changed about my own treatment. Not necessarily the cooking part, but just the way that the foods I was eating were talked about. I was afraid to keep any food in my house, so I was eating out all the time – and that was coming from a fear of binging. That was the eating disorder, and I know that in retrospect. But there were pieces of it that lingered in my head for years about the way that that behaviour, as it was called, was spoken about – that the goal was to get away from eating out because that wasn’t healthy.
So now when I’m having a day where executive functioning is particularly hard for me and I eat out, I’m at a point now where I’m like, well, they were wrong. And that feels empowering. But it took a while to get there, and it didn’t have to be that way.
Chris Sandel: I don’t know how many treatment centres you’re having connection with or what you’ve found out from the work you’re doing in this area, but how much does it feel like neurodivergence is being screened for?
Stacie Fanelli: I feel like never. [laughs] Formally, anyway. This is my experience in the treatment centres that I’ve worked at. There’s a lot of surveys that get filled out about which eating disorder you have and how severe it is and stuff – and the weird thing is that eating disorders almost never exist in isolation. There’s always a co-occurring something or other happening under the surface.
But typically what’s being screened for is depression and anxiety, and it stops there. To the extent that many treatment centres won’t even accept clients who have what they deem to be more complex mental health diagnoses – dissociative disorders, schizophrenia. They feel like they’re not equipped for it. Or they’ll accept them and treat them like they would a neurotypical client, and it doesn’t work. And that’s if a person already has that identified.
The thing about recovery is it brings up the stuff that the eating disorder was suppressing, so if the eating disorder is serving as a mask for a person, then neurodivergent traits that I’ve been suppressing for years, when I start challenging myself, when I have to let go of my coping skill, are going to become more predominant. But I think that is so frequently attributed to malnutrition or some other pathology, or even just a person is being difficult or they’re behaviourally acting out because they don’t want to eat or something like that. I think that is just accepted as truth rather than “What else might be going on here? Could this be a trait, like we’re starting to see the real version of somebody? And what would happen if we embraced that rather than fought against it or tried to change it?”
01:01:07
Chris Sandel: You used the word ‘masking’ there. Can you define what masking is?
Stacie Fanelli: It’s hiding neurodivergent traits to some extent. Sometimes that’s via the suppression of neurodivergent behaviour patterns, something that we notice in ourselves that’s different than other people so we try to blend in to camouflage ourselves by taking on other people’s patterns. That might even be scripting – “I’m going to talk like that person” or “I’m going to use the same mannerisms and then nobody will know that I’m different.”
Sometimes we’re performing those learned behaviour patterns, but sometimes it’s also compensating, like overperforming to distract from what we perceive to be shortcomings. Like, “Okay, I have a lot of trouble focussing and I don’t get as much work done as this person, so I’m going to do all this overtime at work and then people will like me anyway.”
Chris Sandel: I’ve had a number of clients that developed ADHD symptoms only after entering into a state of malnutrition, when their eating disorder started. This was in their late teens or their early twenties, but prior to this they felt that they didn’t have any of these issues. They didn’t have issues with decision-making or staying on task or planning, for example. And they feel like they can’t have ADHD because if they did, this would’ve been obvious all throughout their life prior to the eating disorder.
What would you say to this? Does something like ADHD have to be obvious all throughout life, and therefore these symptoms are connected to the eating disorder and malnutrition? Or the symptoms can arise later in life, or the malnutrition eroded someone’s ability to mask? How would you think about this?
Stacie Fanelli: Good question. Malnutrition can definitely show up similarly to ADHD in many ways as far as focus, concentration, hyperactivity. But it can also decrease our executive functioning capacity, and it takes executive functioning to mask. So there is also a chance that the eating disorder involuntarily unmasked the person.
Acquired neurodivergence through trauma is very possible, so it’s important to explore whether the onset of the eating disorder coincided with a traumatic event or even the culmination of many smaller things that a person experienced as traumatic that may be less obvious to them and other people. For example, sensory trauma or burnout from overdoing it.
So yes, the DSM says that the onset of ADHD symptoms must be before the age of 12, but why? [laughs] What purpose does that serve but to gatekeep resources? The same accommodations and tools can help a person, whether they were born with ADHD or they developed it later or it’s trauma-based, whether they met criteria or they just have some traits. That just hammers home the importance of screening for acquired neurodivergence as well.
But I think there are subtle ways that we can tell the difference between malnutrition and neurodivergence. But the primary thing is time. When the person is nourished, what happens?
I think that also speaks to the importance of not making promises. I know that for me, I had my eating disorder when I was in college, so I was really bothered by the fact that I couldn’t focus on my studies and it was affecting my grades. My therapist told me, “When you’re eating the way we’re telling you to eat, you’ll be able to do the things that you could do before.” And I don’t think that I ever necessarily – not that I never came back to that place, but I definitely held the hope. The focus for me was a big motivator for recovery, but I was kind of told that recovery will make me neurotypical. It was very disappointing when that didn’t happen, and it made me want to cling to my eating disorder longer. “If I can’t have this, what’s the point?”
Chris Sandel: For me, this is why it’s been also helpful to have this discovery with clients, because we’re then able to say, “I don’t know how much of this is the eating disorder, I don’t know how much of this is the autism. So when you get better, I don’t know which parts of this are going to stick around and what parts are going to change. Let’s talk about what things were like before your eating disorder started. Maybe that can give us a bit of an indication of where it’s at.” But yeah, not making those promises when you don’t know what’s going to happen.
Stacie Fanelli: Yeah. Even thinking about how things were before the eating disorder – that was also when I was masking.
Chris Sandel: Sure.
Stacie Fanelli: And that’s why I hesitate to use the word ‘recovered’ for myself, even though I’ve been sustaining life without thoughts or behaviours for several years now. The word ‘recovered’ implies that I’m going back to who I was before my eating disorder. Well, that person is the person who developed an eating disorder. I was burned out from the extent to which I was masking, and I don’t want to go back there. That person for sure was better performing academically, and that person was maybe even more acceptable many times because I was performing.
Could I even go back? (a) Is it sustainable? No, because it landed me with an eating disorder. But (b) that’s not often an option for neurodivergent people. That might be the least healthy place for them to work toward going.
Chris Sandel: Thank you for saying that. That’s a really useful way to think about it. When I was making that comment, I wasn’t thinking about the masking element and how much that had been playing a role and had led to either the eating disorder or the burnout or whatever it may be. So you’re right, it’s going to a new, third state.
01:07:40
As I explore this topic as well, I’m seeing how common it is for clients. For example, high sensitivity I think is meant to be about 20% of the population; I’d say it’s 80% of my clients. With autism, depending on the stats, it’s meant to be like 1 in 100 or 1 in 44. I’d say with my clients it’s 20%, and really this is something I’m fairly new with exploring, so it’s probably much higher than this. And then the same thing with ADHD. The population percentage is very different to the percentage of clients that I’m seeing with eating disorders. So what are your thoughts on this?
Stacie Fanelli: This makes so much sense. The likelihood for development of an eating disorder via a coping strategy to manage challenges of existing in a world not built for us is much, much higher in any marginalised population. I’ve also found that even when I’ve taken on a new client who doesn’t report neurodivergence, at intake, more often than not they’ve turned out to be neurodivergent. I don’t know whether that’s because I’m neurodivergent, so the people I develop the best rapport with are neurodivergent, or just because the prevalence is really that high. But I wouldn’t be surprised by either one.
And especially with ARFID, avoidant-restrictive food intake disorder, neurodivergence is more often than not the reason it develops. Trauma-related phobias are the only exception, in my experience, to that. And the neurodivergent relationship with food is just by definition different than the neurotypical one, but it’s pathologized for not fitting the mould. And oftentimes the work in therapy is actually just de-pathologizing and self-accommodating rather than recovering from anything at all.
Chris Sandel: So if someone is a practitioner and they’re listening to this, how would you suggest they go about starting to explore neurodivergence with their clients? Are there some suggestions you make with this?
Stacie Fanelli: Yeah. I always advise people to be gentle and be cautious about their language. We, as professionals – or at least, many of us – know that neurodivergence is not a disease and it’s not a bad thing, but this is still the narrative of the mainstream general public. So I would barely find it appropriate to dive right in and say, “Hey, I think you might be autistic” because, due to our ableist culture, the person is likely to feel hurt by that.
So I usually raise the possibility by asking a question about whether they’ve ever been assessed, or even pointing out traits that I see in session, like tangential speech or being easily distracted. Even if they use the fidgets a lot. All neurotypes love fidgets, it’s true, but if there’s the slightest indication, I ask about it, because I wish that somebody had asked that of me when they saw the slightest indication and hadn’t tip-toed around it.
I’ll ask a general question like, “Is this something that happens for you a lot? In what context? When do you notice it happening more often?” Sometimes they won’t even have noticed the pattern till I point it out. Other times, especially for Gen Z, they’ll tell me they’ve always wondered if they might be neurodivergent, but they were too worried about being invalidated to bring it up. So my advice is to have a frank conversation with people about the pros and cons of looking further into it, of maybe getting formally diagnosed, having an assessment.
I always emphasise and educate on the social model of disability over the medical model, and a strengths versus deficit based lens. I also send a lot of TikToks to my clients. [laughs] And podcasts and book recommendations. Because something that’s true of a lot of neurodivergent folks is we like to have all the information we can get about ourselves, and I’d rather vet the resources myself than have them go digging into misinformation. I know they’re going to go find it anyway, and I feel like the best learning we can do is from other neurodivergent people.
Chris Sandel: Yeah. When I bring it up, it’s something like you, like “Have you ever been screened for this?” If it’s a no, I’m talking about, similar to the statistics I just said, “This is something that’s coming up more with clients” and just saying, “Is this something you want to explore at this point?” There are certain clients who are like, “Yeah, definitely, can you send over whatever there is? Are there questionnaires I can go through?”, etc.
And others are like, “You know what, I’m kind of just trying to get to grips with everything with my eating disorder, and now doesn’t feel like the right time. It’s something that I’ve thought about” or maybe “I haven’t thought about it, but right now doesn’t feel right.” And I’m like, okay, great. If that’s the case, then that is completely okay. Not having to force this upon someone.
Stacie Fanelli: Yeah, exactly.
01:12:49
Chris Sandel: In terms of the grieving process connected to this – because obviously you commented on like “I found this out much later than I really would’ve liked to, I had to grieve the fact that the treatment centres I visited didn’t perform in the way that ideally I would’ve liked” – so what is the grieving process like for your clients, and how do you help with that? And any more about your own grieving with this?
Stacie Fanelli: There’s so much that’s being grieved on an ongoing basis. The overall theme of that grief is uncertainty. The version of ourselves that we don’t know – “What would my life look like now if I had known and I had access to resources earlier on? Would I have even had access to those resources if I had known? Maybe it would’ve been worse. Maybe I would’ve been more marginalised and people would’ve said I was just making excuses even if I did have the diagnosis. Was I even ever depressed, or was it just my ADHD?” and on and on. There’s so many questions we’ll never have answers to.
And there’s grief even for those who did know that they were neurodivergent earlier, because oppression is ongoing. Every time we get the message that we’re not enough – we get passed over for a job or asked, “Why can’t you just XYZ?” – it’s going to bring up grief. But like any grief, you don’t move on; you just grow around it.
My grief process looked like becoming more secure in my identity and knowing what I am and am not capable of and accepting that instead of trying to continue to perform that and burn out again. And identifying as having a disability and accepting my limitations as well as things that I can do that neurotypical people can do without using the strengths to sugarcoat the weakness. I’m not a fan of the phrase ‘neurodivergence is a superpower’ because it gets rid of the part where it sucks. [laughs] I think both can be true at the same time, but we can’t just overlook one.
And making meaning of it all, for me, means helping other people do the same. My clients’ grief doesn’t always look like this. I get a lot of teens in particular who won’t use their individualised education plans at school because they compare themselves to their neurotypical friends and they say, “If they can do it, I should be able to do it”, or it’s embarrassing, it draws too much attention to them to fidget in class, for example, even though they’re allowed to. They’re just not ready yet, and they haven’t come to their own realisation. Not the realisation where I tell them, “It’s okay to not be able to do it.”
I meet them where they’re at by helping them with executive functioning strategies and scaffolding the fallout and kind of waiting for them on the other side, for when they are ready to face that grief.
And then I’ve had clients come to their own breaking points while in therapy – which is a very convenient place to do it. [laughs] Sometimes it’s being pushed up against a wall by family that misconstrues their burnout as laziness and insists that they get a job even though they quite literally can’t. But we have to figure out how to mask adaptively in those cases in order to survive. Masking isn’t always bad. We wish we didn’t have to do it, and it also is essential for us to learn to do it in some contexts, and grief maybe looks like being sad that we have to and also doing it anyway.
Chris Sandel: And we all mask. We all try and put on a performance of like “I’m feeling more confident than I really am in this situation” or turning up to a job interview and trying to give the best performance of yourself and use words that you might not necessarily use or whatever. So it’s not that masking is bad and everyone needs to stop doing it. It’s more like, how much are you having to do this through your everyday life, and what is the toll that is being paid because you’re having to do this?
Stacie Fanelli: Yes. Right. And I think neurodivergent people just have to mask more than neurotypical people because neurotypical traits are more acceptable.
01:17:15
Chris Sandel: Yeah. What about in terms of diagnosis? I’m not credentialled to give an official diagnosis, so if I’m bringing this up with clients, it’s more informal or they’re doing a self-diagnosis because of reading different memoirs or listening to podcasts or going through different online tests. I can only think of one client who actually was interested in going down the route of getting an official diagnosis. So what happens in your practice with clients that you work with? How many of them are getting a so-called ‘official’ diagnosis versus self-diagnosis?
Stacie Fanelli: That last question, I would say it’s probably 60/40 in favour of self-diagnosis. And the only reason so many people do have a formal one is because I see a lot of teens and college students who need the full neuro psych evaluation with the testing to access accommodations officially.
So I’m a huge proponent of self-diagnosis because (a) it’s so hard and expensive to get a formal one; few insurance companies cover even a portion of the cost, and (b) formal diagnosis can be inaccurate. The tests are a mix of objective and subjective interviews. Depends on the psychologist to be affirming, to be well-versed in masking and gender differences of the way that different neurotypes present. And it’s just risky, and it hurts so much to have – I guess I should say a false negative, kind of, to be told “No, you’re neurotypical. You’re just faking it.”
Which I should say, though, is a very, very common fear that my clients have in discussing the possibility of going through with testing and almost never happens. But it’s something that we have to work through a lot, like “What if it comes back that I’m not neurodivergent? What does that mean about me?” It’s terrifying.
Another reason I really am a fan of self-diagnosis is formal diagnosis has its cons. There’s very overt discrimination that comes with being labelled with a certain neurodivergent diagnosis. Diagnosed autistics, for example, are not permitted to travel internationally in some countries, to join the military. They’re treated worse by medical professionals if it’s on their record because they don’t have the opportunity to mask first. Infantilization. There’s many reasons that you want to hold on to that ability to present as neurotypical and be given the benefit of the doubt.
But with that, there’s the other side of things, which is, are you forgoing that chance at validation and having somebody ‘officially’ say, “Yes, this thing that you suspect about yourself is true”? I myself am grappling with this right now as I think about whether I want to pursue a diagnosis with my autistic traits. We really like certainty, and because of systemic invalidation, we often struggle to trust ourselves.
But part of therapy is restoring trust in our intuition, and diagnosis is external validation. It’s being seen. There’s a lot of overlap amongst different neurotypes – for example, ADHD, PTSD, bipolar, and autism all have a lot in common, so clarifying what’s what can be really helpful for knowing how to proceed with accommodation and what to expect, and in knowing “So some of these behaviours I’ve been blaming myself for are just things I can’t control, so maybe now I can give myself permission to just be.”
Chris Sandel: It’s so hard hearing all of that, because often I’m seeing clients who have autistic traits and they also had a horrible upbringing with huge amounts of trauma, so there’s that thing of like, where does one thing start and the other thing end? Or maybe one thing didn’t even start; it’s just all this other thing. It can become so difficult. And as you say, if the diagnosis is very subjective, it depends on who you get on that day. So it’s like, what are you hoping to get out of this? What would be useful to then know about this? Is it about “What direction shall I go with treatment?”, etc.? I think whether to go down that route really depends on what you’re hoping to know.
Stacie Fanelli: Yes, that’s such a great question to pose. “What do I want to know?” I’m actually glad you said that because I’ve had really good conversations with clients where we try to answer that question. I actually recently had a client make a list of the questions that they have about themselves that they don’t feel like they have another way to answer, that they would hope would be answered by an assessment. It’s things like, “Why does my body feel like this?” and “If I’m autistic, would that explain this thing?”
I think the reason that we’re still hung up on – the answers to that question still don’t necessarily get us to a yes or a no, “I should go through with getting this official diagnosis” because the question may remain unanswered. There’s so many different possible answers beyond neurotype as to why people experience things a certain way.
When you brought up trauma, I was also thinking about the fact that there’s not really – it’s very rare that a neurodivergent person does not experience some kind of trauma during their life because we live in a neurotypical world built by and for neurotypical people. The way to skirt around adding trauma to that and to the impact it has on our neurology is adequate accommodation and early identification. And that just doesn’t happen frequently enough for the world to have produced a strong number of definitively non-traumatised neurodivergent people.
Chris Sandel: Yeah. You don’t have another group to compare against.
Stacie Fanelli: Exactly.
Chris Sandel: There is no control.
Stacie Fanelli: Yeah, so how are we supposed to know ‘this is just a thing that happens in ADHD’ versus ‘this is a thing that happens when you’re traumatised because of your ADHD’?
01:24:19
Chris Sandel: Yeah. So I heard on a podcast, you mentioned in passing that you have an exercise you do with clients with unpacking their mask. I’d love for you to talk a little about this. How do you do this with clients? What does this look like?
Stacie Fanelli: Sure. I actually was first inspired to do that work from the book Unmasking Autism by Devon Price, where they break down how a mask develops in the first place, which is in the form of this chart where the first column is “What things did I learn that it was bad to be, and as a result, what did I aim to be instead?” Those things are kind of polar opposites. Like if I learned via my family’s criticism and overcorrection that it was morally bad to be lazy, then I would go to the other extreme and overproduce, and in the process define myself by my output.
So we have “What did I learn that it was bad to be?” and then “What did I aim to be instead?” Our last column would be “How did I do this? What behaviours showed up? What does my mask look like?” That’s how we deconstruct it, and we figure out, what is a mask and what is me?
The behaviour in that example would be workaholism, self-shaming, punishing myself when my natural difficulties around focus revealed my true self. Now that I know that that was a mask and have given myself permission to take it off by rejecting the basis on which it was formed in the first place, I can allow myself to rest. People mask all kinds of natural characteristics that are demonised – even polar opposites, like somebody might mask their natural tendency to be really talkative or their natural tendency to be really quiet because either extreme is seen as unacceptable. Awkwardness, coldness, disliking touch, all those things might end up masked.
You can do this exercise in different ways. You can ask yourself, “What did I learn that it was bad to be?”, or you can just list your personality traits and start to analyse each one. “Is this something that I learned? Where did I learn it? Is this something that I wish I wasn’t? Is this something I like about myself?”
In addition to this chart that we create, we also sort through values – something that’s common in acceptance and commitment therapy, classifying what is important to me versus what is less important, and whether my behaviour is in line with that or not. And if not, why not? Is that a conscious choice, or was that one that was put on me?
Chris Sandel: Nice. I really like that exercise. I’m going to be taking that and using that with clients. I would also add that even if you remove the neurodivergent piece, you could see do this where you talk about the eating disorder as being a mask.
Stacie Fanelli: Eating disorders are a really common mask that people use. Like you said at the beginning when I was explaining neurodivergent traits, you said those all sound a lot like things that would set somebody up of ran eating disorder. The eating disorder is very logical. It’s an ingenious survival strategy in many cases where it combines all of those things that people deem acceptable – perfectionism, workaholism, being tenacious and persistent and quiet and taking up as little space as possible – and it creates something tangible out of those things.
01:27:56
Chris Sandel: I know you run an adult autistic and ADHDers eating disorder support group. What do you cover as part of this group? What are you doing in the group?
Stacie Fanelli: It just started. The second one’s coming up next week. But in the past, I ran a group that had a theme every time, and I did a little presentation about the theme. Because of my experience, neurodivergent-affirming care was providing structure and information and not having things be too open because that would be stressful. But the reason I wanted to change that was it was exhausting me. And then when the group went on a hiatus because of my own schedule, I kept hearing from former members that they really wanted to come back, but just as a gathering space to relate to each other.
So that’s what it is right now. It’s open to people in and out of recovery. I wanted to make space for harm reduction strategies. And even people who are just choosing to stay in their eating disorders right now but still want community.
Some of the topics that come up naturally that I talked about in the old structured group are masking, figuring out what’s a preference versus what’s the eating disorder, dealing with being misperceived, coping with burnout, knowing your rights as a disabled person, healing from harmful treatment experiences, executive functioning ideas around food prep and cleanup. People share, like, “This podcast is really helpful.” One person once announced to the group that they got an air fryer and that it had changed their life, and then the next time, somebody came in and they had gotten an air fryer, too. I feel like the power of peer support cannot be overstated.
Chris Sandel: Nice. I like the idea of that.
01:29:47
I know you’re also in training for animal-assisted therapy. Talk about this.
Stacie Fanelli: My best friend chihuahua, Duncan, and I have been working on this long term. He’s a Canine Good Citizen, so the official AKC registration for various things. He’s not a registered therapy dog per se. We’ve kind of put this training on the back burner a little bit because honestly he’s such a good boy that he’s already so helpful just the way he is naturally. He co-regulates with my clients by just being there and being himself. He’s so excited to see people, and he rubs himself on the carpet and it’s kind of comedic relief in the middle of our sessions.
But most often, though, just hopping on their laps and falling asleep – this unconditional love that he gives people that he just met seems to be really healing in a situation where a client is used to relationships where they’ve always had to fight for love. I know that’s how he’s healed me.
What I’m really interested in exploring as I do more training in animal-assisted therapy is how he might be able to help clients connect with their internal experiences. For example, he picks up on stress really well and he reacts to it. Actually, several years ago, he was my formal service dog when I worked in a higher demand environment with more paperwork and I was struggling with focus. I would say I trained him, but honestly he came this way from the shelter. He was able to lick my face when he noticed that I was distracted or had stopped typing for a long period of time. It was really, really cool.
So he picks up on cues, and what I’m curious about is training him to alert clients to specific emotions, especially those who are alexithymic and don’t see those emotions themselves. Because already, he does a lot of face-licking when somebody is having an intense reaction and they don’t know they are. When somebody’s shaking their leg, he tends to put pressure on it and that alerts them to the fact that maybe they’re anxious. I haven’t seen much research on this yet, but I’m really hoping it exists.
Chris Sandel: That’s so interesting. Are you getting into it in the way that you’re thinking of then recommending that clients get their own dogs that can be helping them in everyday life? Or it’s more ‘in-session, this is how I’m going to be using him’ and that’s the way it is?
Stacie Fanelli: Maybe both. Obviously if it’s accessible to them. Money is a really big factor, and a lot of times, particularly service dogs are upwards of $20,000.
Chris Sandel: Ouch, okay.
Stacie Fanelli: Right? I got so lucky with Duncan. He just came straight from the shelter ready to work. So it is possible, and service dogs, at least in the U.S., there’s no registry. They don’t need – you can train them yourself; it’s just really difficult, and there are certain expectations that have to be met behaviourally and whatnot, and they have to perform a certain task. But psychiatric service dogs are I think incredible working animals.
I thin I’m less likely to recommend “Hey, you should get a service dog” than I am to support a person in the process if they’re interested. And I have had clients very interested and a couple who are pursuing this process right now. But my focus is definitely on, how can he be supportive in the room? Even, actually, my telehealth clients. I have some clients who specifically ask to see Duncan on the screen. [laughs] Just his presence is calming.
Chris Sandel: It has, as you said, a co-regulation effect. It’s so helpful for the nervous system. I can imagine if a client is sitting in session with you and can have a dog in their lap that is warm and maybe snoring or whatever, that has a real co-regulation effect.
Stacie Fanelli: Absolutely. Yeah, he’s a big snorer. [laughs]
Chris Sandel: Has your research with this been just dogs, or other animals as well?
Stacie Fanelli: I’ve stuck with dogs, as a dog person. But I have seen incredible effects of other animals on my clients in their own lives. Even the power with depressive symptoms of having something to wake up and take care of, no matter what species it is, has been transformative for people who didn’t feel like they had a purpose before then.
Chris Sandel: Yeah, I have one client who is just the biggest animal lover, of all animals. Having dogs and rabbits has just been so helpful for her, and she was even looking into getting into animal-assisted therapy and using it with equine therapy, so horses. It’s interesting to hear how you’re already using this.
Stacie Fanelli: Yeah, I’m really interested in doing more of the formal stuff. Animal-assisted therapy is a formal modality that I have a lot to learn about, but I feel like just informally getting into it so far has already taught me so much that I feel like I can only go up from here.
Chris Sandel: Nice. Stacie, this has been such an awesome conversation. We’ve covered so much, and so much stuff that I haven’t touched on the podcast up until this point. Where can people be going if they want to find out more about you and the different things that you offer?
Stacie Fanelli: My general presence online is my Instagram, which is @edadhd_therapist. I’m at the same username on Patreon, which is what my group is run through. That’s monthly, and there’s spots and that’s open to people all over the place. Through Patreon also, there’s monthly webinars on different topics that used to be covered by that more structured group. Now it’s just me randomly talking about things that happen to come up that I’m still perpetually learning about at the intersection of neurodivergence and eating disorders.
Chris Sandel: Nice. I will put those links in the show notes, and thank you once again for coming on the show. I really appreciate it.
Stacie Fanelli: Thanks for having me. This has been great. I didn’t realise I had so much to say. [laughs]
Chris Sandel: So that was my conversation with Stacie Fanelli. I think she’s doing great work in the intersection of neurodivergence and eating disorders, so if this conversation resonated with you, then you can check out RDs for Neurodiversity, which Stacie is a part of and writes for, as well as her Patreon page.
01:36:43
I have one recommendation for you of something to listen to. It’s the album Ants From Up There by Black Country, New Road. I first heard Black Country, New Road maybe a year ago, maybe even longer than that. One of their tracks called ‘Sunglasses’ was on my Discover Weekly playlist on Spotify. The first time I heard it, I actually turned it off halfway through. I was trying to concentrate, and it was just too much. At the midpoint of the song, there is drums and guitar and saxophone and piano, all crashing into one another, and this screaming and laughing vocal, and it’s just very intense.
But the next time it came on, I listened, and after this rather jarring midpoint, it all drops away and then becomes somewhat normal again, until it becomes jarring again at the end. I just became really intrigued, and I realised how incredible the lyrics were for the track. But that was it, and I didn’t really listen much after that.
But rather recently, one of their songs again appeared in my Discover Weekly playlist, so I decided to finally check out their most recent album, which is called Ants From Up There. It took a couple of listens to fully get into it, but I am now hooked. I’ve been listening to it multiple times a day, and I’ve been doing this for at least a month.
Their music is really difficult to describe. There are definite rock and post-punk influences. There’s jazz. It’s very experimental. There’s this kind of carnival feel to it, and it often clashes together and has these real points of explosion.
I’ve read interviews with the band members, and all of them talk about having this huge appreciation and love of pop music, and that’s what brings them together. But when I listen to their music, I hear none of that. It feels like the opposite of pop music. The final two tracks on the album are 9 minutes and 12 minutes, respectively, and there is nothing ‘pop’ about them.
The lead singer is a real wordsmith. He’s got incredible lyrics. In parts, he reminds me of Jarvis Cocker or Nick Cave, but he really has a style that is very much his own.
This is easily my favourite album of the year, but because of how different the sound is, it does take a number of listens to start to appreciate. I highly recommend checking it out. It’s called Ants From Up There by Black Country, New Road.
So that is it for this week’s podcast. I’ll be back with another episode next week. Until then, take care, and I’ll catch you soon.
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