Interview between Speaker 1 (Meg) and Speaker 2 (Naureen Hunani)
Episode 53: Affirming Approaches to Picky Eating – Moving Beyond Systematic Desensitization
[Introductory note]
Hey, it’s Meg. I know that if you’re a professional and you’re here, it’s because you want to work in a way that has a positive impact on the self-identity and well-being of your autistic clients. And at Learn, Play, Thrive, we really want to support you on that journey because the way we work impacts kids, families, communities. It really matters. And it’s so hard to swim against the current on your own. That’s why we’ve put together two huge continuing education summits, one for OT’s and one for SLP’s, that will give you the tools and confidence to go deeper into your work with a neurodiversity-affirming lens. We want you to leave the summit just buzzing with confidence and enthusiasm, and really connected to a community of like-minded therapists. We have a truly engaging and brilliant panel of neurodiverse professionals teaching on everything from disability justice, to AAC, gestalt language processing, interoception, regulation, and even strengths-based approaches to literacy. Yes, OT’s — that includes what we should be doing instead of drilling letter formation with our autistic clients. There are a limited number of early bird spots available, so head over now to learnplaythrive.com/summit and be a part of this huge culture change in the therapy world. Then go tell your friends and colleagues! We’re giving $500 to the therapist who refers the most people to register for the summit, because we want to make a huge impact with these events. So, visit learnplaythrive.com/summit.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘autistic person’ rather than ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 53 on neurodiversity-affirming approaches to feeding therapy with Naureen Hunani. In this episode, we are going to dive right in to how the old paradigm for supporting picky eaters is harmful to our autistic clients, and explore in-depth what you can do instead. This conversation was so impactful on my understanding of how to approach feeding with autistic clients. Naureen is incredibly insightful. I’ll tell you about her. So, Naureen Hunani is a multiply neurodivergent Registered Dietitian. She has over 17 years of experience. She’s the founder for RD’s for Neurodiversity, a neurodiversity-informed online continuing education platform for dietitians and other helping professionals. Naureen has a private practice in Montreal, Canada, where she treats children, adults, and families struggling with various feeding and eating challenges through a trauma-informed, weight-inclusive, and anti-oppressive approach. Naureen is a supporter of early diagnosis of feeding differences, and she advocates for inclusion and acceptance. She has spent years exploring neurodiversity-affirming approaches to working with picky eaters, and she presents internationally on this topic.
So, this is one of the most requested topics for the podcast and I want to assure you that we are working on a continuing education course on feeding that will give you an alternative to the standard play-based Systematic Desensitization approaches. So, if you’re hungry for more, if you’re ready for the next course — okay, sorry for all the puns. If you want to know when we have more information ready for you in a continuing education format, visit learnplaythrive.com and make sure you’re on our email list so you don’t miss out. Here’s the interview with Naureen Hunani.
Hi, Naureen! Welcome to the podcast.
Naureen:
Thank you for having me.
Meg:
I’m really very thrilled that we get to talk for so many reasons. And I want to start with your story. Can you tell us little bit about how you came to work as a registered dietician, and how you came to found RD’s for Neurodiversity?
Naureen:
Yes. So, I grew up in a home that, you know, really celebrated food. My dad was in the restaurant business, and food was something that really brought our family together; it was a huge source of joy and pleasure for us. And growing up, you know, I was lucky enough to see both of my parents cooking and spending a lot of time in the kitchen, which is not very common in my culture, in the South Asian culture. So, I started cooking, experimenting with different ingredients and food in a very early age. I was also very interested in health sciences. And by the time I was in high school, I started doing a whole bunch of research and realized, well, why don’t I just merge these two passions together, cooking food and sciences? And so, at that time, it felt like, okay, well, becoming a dietitian would be like a dream job. And the interesting thing is after five years of practicing as a dietitian, I was ready to exit the profession.
And, you know, by that time, I had been practicing in different settings, I had a private practice, and I was just getting so tired of telling people what to eat. It didn’t feel good to me to put people on diets for weight loss. And obviously, I didn’t have the language back then. But what I was experiencing is really, you know, there’s a lot of confusion because how I was practicing didn’t really align with my values. And around that time, I gave birth to my firstborn. And then, two years later, my daughter was born. And I became interested in [07:06 pizza?] and that kind of like, saved my career in a way. But both of my children ended up having feeding differences related to neurodivergence. So, they’re both neurodivergent. And, you know, they really challenged a lot of my ableist beliefs around food and eating. I tried to get support from professionals, and everybody was just kind of giving me that prescriptive advice, “Just keep exposing,” and, “Just eat together and family meals,” and all of that.
But, you know, none of that was really working, because I felt like we were not speaking the same language. So, there was a lot of invalidation, which led to me exploring a little bit more on my own and doing a whole bunch of different courses on feeding and development. And I got introduced to the neurodiversity movement. And so, that’s what kind of, you know, led to this idea of starting a platform for providers that want to offer neurodiversity-affirming therapy and are interested in doing more anti-oppression work.
Meg:
That’s such a huge need. I was really glad to find you. I’ve been looking for a long time for somebody who’s working around feeding issues, but in a way that’s informed by the autistic community and is neurodiversity-affirming. And I think your story is probably really relatable to a lot of our listeners, because so many of us start as OT’s, or SLP’s, or mental health therapists, and within the first five years kind of start to feel like it’s not what we had hoped it would be. And I think it’s that gut feeling of ‘This doesn’t align with my values and what I’m doing doesn’t feel important in some way’.
Naureen:
Yeah, absolutely.
Meg:
In a way that it could. Yeah. So, I love that you were able to listen to that feeling and forge a different path, which isn’t always easy to do. I want to talk about the challenges faced by autistic children and their families when it comes to feeding, meal planning, family meals. You said this advice was prescriptive, was not very relevant to what was happening in your family. Can you unpack for me what’s happening? What are the challenges that families with autistic kids are facing?
Naureen:
Yes, absolutely. And, you know, I just want to mention here that I don’t want to necessarily generalize, you know. I mean, I come from a family — there are so many autistic family members in my family and we all have different ways of eating. And some have challenges, others don’t have challenges. So, what I’m seeing in my practice, obviously, the parents that are seeking my support are parents that are struggling, right. So, that’s all I’m seeing in my practice, right. But that doesn’t mean that’s what’s happening in all families with autistic members. So, I’m going to try and frame this in a way that is really affirming because the number one, I guess, challenge is lack of acceptance. And, you know, the lack of acceptance around feeding, and eating, and what eating should look like.
So, the neurotypical milestones that we see in the feeding world are incredibly damaging to those who are autistic, to those who are disabled, to people with sensory processing differences. And this idea that all children should be able to eat a variety of textures by 12 months, again, is also very, very damaging, because for some children, the variety when it comes to textures comes later. For others, it doesn’t come. And that’s okay, too, right. So, there’s so many neurodivergent traits that impact eating which are very poorly understood by providers, especially providers that don’t necessarily have the lived experience, right. So, a lot of the challenges that I’m seeing are related to the fact that parents are just trying to navigate feeding in this culture of ours that is so helpless, that pushes variety so much, that really glorifies a certain way of eating, right. And stigmatizes preferred foods and foods that do bring a lot of nourishment and joy to people who have feeding differences. And this includes people with ARFID, even. So, you know, that’s one aspect.
When it comes to meal planning and family meals, you know, that can be really challenging as well for a lot of reasons. We know that neurodivergence typically runs in families. So, if you have parents who are also — if they are parents that are neurodivergent or with executive functioning differences, it can impact meal planning, grocery shopping, cooking, sensory differences, you know. All of these differences can impact how we access food, how we prefer food, our ability to cook, all of that. And then, when we have family members with very different needs when it comes to food and eating, then the ‘One meal’ idea doesn’t work for a lot of families that I support. So, I guess like, neuronormativity is probably what hurts families the most, families that I work with. This idea that you make one meal and it works for everyone, it doesn’t work for a lot of families with autistic members.
Meg:
Naureen, I’m just nodding at you as you say this, because these are familiar shifts that we’ve been making in every other area but we haven’t yet applied them to feeding on the podcast. You talked about accepting differences rather than pathologizing differences. You talked about being critical of milestones as the one path, right, the way neurotypical children without any sort of divergence in how they eat, that that being the one way to properly move through feeding and eating. You talked about how we learn from people with the lived experiences, which is interesting, because people have been asking me for this so much around feeding, “Can you please interview adult autistics who are highly restrictive eaters who have been through feeding therapy?” There’s a lot of people saying, “I don’t think my feeding approach is informed by people’s lived experience,” and they’re starting to look for that. And then, you also tied it into the experiences and needs of neurodivergent caregivers. And what I’m really hearing you say is there’s no single pathway to eating. I don’t know if the right word is, like helpful, or like, eating routines that serve a child and their family, that we have to really broaden our lens on what that means and what that looks like, is that right?
Naureen:
Absolutely, absolutely. So, we really have to move away from the prescriptive advice and really do more listening and help understand what families are going through. And these families are the expert in their own experience, and they can figure out what will work best for them if we do enough listening and actually offer validation and learn from people with lived experience. Because a lot of these experts, right, that we will learn from in the feeding world are actually, you know, able-bodied neurotypical researchers and providers. So, there is a gap.
Meg:
Yeah, you’re right. And our outcomes in our research studies are only one thing, just like when we look at the research for, you know, supposedly evidence-based interventions for autism.
Naureen:
Exactly.
Meg:
Okay, what are the outcomes? The outcomes are an autistic child masking well and presenting as more neurotypical. So, the favorite outcome of this research study is necessarily going to harm the mental health and well-being of our autistic clients. And we’re saying that’s evidence based. And I’m sure there’s the same sort of limited scope of positive outcomes for feeding.
Naureen:
Yes, absolutely. And one thing we have to also kind of reflect on is, you know, when we look at neurodivergence, right, like how when we look at the criteria and when we look at the DSM, it’s really about how others view that person’s experience, right. It’s about symptoms, all of that. And it’s the same with feeding, right? It’s incredibly pathologizing. Because, you know, people without lived experience looking at these quote-unquote feeding patterns’ that are often labelled rigid or selective, really are really looking at the experience from the outside and not necessarily curious about, “Oh, how is it experienced by the person?”
Meg:
Yeah, that’s so true. It makes me think about autistic adults describing what we professionals might use, the pathologizing language around highly restricted eating or the sort of neutral language of preferred foods. And then, you hear autistic people talk with so much joy and love about the same foods.
Naureen:
Exactly. Exactly.
Meg:
The foods that they can count on to be the same wonderful experience every single time.
Naureen:
Exactly. And some people might call that disordered, right? And so, it’s just incredible how ableist our profession can be and how ableism shows up in feeding.
Meg:
I want to define a term real quick, and then I have a specific question for you. So, you mentioned ARFID, which just, if people aren’t familiar, that’s avoidant restrictive food intake disorder, which is a lot of the kids that we’re seeing for feeding therapy. So, a little history for the podcast is that I’ve been looking for someone to talk about neurodiversity-affirming approaches to feeding since Episode Two, when we had autistic researcher, Damian Milton, on the podcast. And he was talking about how we need to accommodate sensory differences for autistic people rather than trying to desensitize them to it. And he talked about his own aversion to Parmesan cheese. He said, “If you tried to desensitize me to that, that would genuinely be torture,” like, don’t do that. And so, that’s when a lot of our listeners started to say, “Hey, I’m trained in this play-based Systematic Desensitization approach to working with picky eaters. Should I not be doing that?” And I said, I have no idea but I’m gonna keep asking that question, too. So, I mean, that’s the main approach that isn’t the old school behavioral approaches, right? Like, when I was an OT student on fieldwork, I saw my fieldwork supervisor holding a child’s hands down and force feeding her, and I cried and left. I couldn’t watch that. So, this feels better than the behavioral approaches to feeding. And I hear the critique. Can you speak to play-based Systematic Desensitization for picky eating?
Naureen:
Yes, that’s such a wonderful question. And I’m a huge fan of Dr. Damian Milton’s work and also his research on the double empathy issue, and how when we don’t have the same lived experiences we have a difficult time empathizing, right. So, I think that that kind of shows that also in this type of therapy. So, this is something that I also was trained in. I did the training almost like a decade ago, and my lived experience when I actually started offering this in my practice as an OT, after a year or so I realized that this is not really working because I’m basically tricking children to lick and taste food. And what a lot of the parents were telling me was that well, yeah, they’ll do certain things here, but they won’t necessarily, you know, will try new foods at home. And around that time, I started exploring some of the research on masking, and trauma-informed care, and what that can look like in feeding.
So, over the years, I realized, well, so we are basically trying to desensitize children and hoping that they will somehow end up liking broccoli and strawberries or whatever we’re desensitizing to, but that’s not what really happens, right? So, desensitization — the goal is habituation, right? That if we expose the food enough times and we slowly move up different steps, that they will eventually accept those foods. But what ends up happening is that there is dissociation that happens. Masking, right. And that eventually leads to disembodiment as well. So, you’re not necessarily in your body when you’re eating. You have to mask and dissociate, which doesn’t necessarily develop intrinsic motivation, right? And that’s what we need.
So, if we look at the values of Responsive Feeding Therapy — and, you know, listeners are welcome to take a look at the white paper — intrinsic motivation is actually one of the values, right. And that’s what we should be kind of aiming for. We also know that neurodivergent children are at a higher risk for developing eating disorders later on in life. And so, we should really be prioritizing developing a healthy relationship with food, their bodies. And what desensitization does is that it actually overrides body autonomy, even though it’s offered in a very playful manner. Like, I remember in my sessions, children were laughing, smiling. But there are also, you know, ABA sessions that we see where children are actually laughing and smiling. But there’s still trauma occurring, right? Because children want to please caregivers; they want to please therapists. And they’ll do anything they have to do to feel safe, and that sometimes means fawning.
Meg:
I just want to name what’s probably happening for so many listeners right now, that we’re kind of taking a deep breath, and taking in what you’re saying, hopefully, because I know so many therapists are doing the work to undo the ways that we’re teaching masking and inauthenticity, and that we are contributing to the trauma of neurodivergent people. And this is one more really important layer that if you don’t listen and dig deep and ask these hard questions, it’s really easy to miss. Like you said, it’s really easy to say, “No, they love it,” but the idea of a child, of asking a child to one, externalize their motivation to eat and try new foods, but two, to leave their bodies in order to meet the demands that we’re putting on them and be successful, that’s not what any of us deep down want to be doing. Meeting the goal isn’t worth it. Fine, like yeah, you can say, “Well, my goal was for them to take at least five bites of 10 new foods within three months. They did it. I’m a great therapist.” At what costs? And also, yeah, but really? Like you said, is it really generalizing?
I just really want to let this sink in for a minute before we move into okay, what is responsive feeding therapy? So, I want to ask you that because I know that’s what we all need to hear, right. Like, okay, so maybe Systematic Desensitization isn’t the affirming approach, we thought it was. What can we do instead? Before we go there, are there other common practices related to feeding with autistic clients that you are hoping to kind of direct us away from or raise questions about?
Naureen:
Yes. So, this idea that eating has to look a certain way, that meals have to look a certain way. I also challenge providers to let go of the variety agenda, right? Because variety sometimes comes later on. So, this idea that we’re going to set up five sessions and show that we will learn to eat a variety, it just doesn’t work, right. We don’t do that for other types of goals. Like, you know, I don’t know why when it comes to feeding, we’re still holding on to a lot of these ableist beliefs, right. Also, challenging healthism and other forms of oppression that show up in the feeding world, and how they’re connected to the medical-industrial complex. Because feeding therapy is lucrative, right? So, we have to ask, well, who is this really helping? Is it really helping the child? Who is it helping, right? Like, is it helping the provider? So yeah, I mean, there’s so much to like, to unpack there. And, you know, I know it can be very difficult because I started this way as well about a decade ago. And obviously, we all do this work because we want to help; we want to support. But it becomes really, really difficult when we live in a society where differences are pathologized. So, we really have to let go of this hidden agenda. And that’s why, often, I feel that desensitization can be harmful is because there is an agenda. It is not child-centered.
Meg:
How do you respond to the objection, “But what about nutrition and health?” in terms of pushing for variety as the goal?
Naureen:
Yeah, that’s a really good question. And, you know, as a dietitian, like, a lot of dietitians in my field are very pro-variety. And I’m not anti-variety. Here’s the thing. Our bodies need nutrients, right. Where are those nutrients come from, the body will not care. So, if we’re talking about, like the main, let’s say, macronutrients or carbohydrates, protein and fat, the body will not care if the protein is coming from chickpeas or if it’s coming from chicken nuggets, right. So, when we break down foods, it all basically turns into macro and micronutrients. So, this push for variety, it can actually be very harmful, because what ends up happening is that a lot of these preferred foods are demonized and children eventually stop eating them as they get older because they internalize these messages that these are ‘bad foods’. And that opens the door to other types of eating disorders like anorexia, which is quite common as well in the autistic population.
So, I think that we have to be very careful. If there are nutrient deficiencies, there are ways to meet nutrients by increasing preferred foods, by adding supplements. And to be honest, the majority of people, like the majority of the children that are selective eaters, or children that are, you know, even meet the ARFID criteria, don’t necessarily have nutrient deficiencies. And then, the major issue is psychosocial functioning, which we know, if we’re working — if we’re disability justice aligned and understand the social model of disability, we know that the disabling aspects of selective eating and ARFID are actually created by the environment. So, we have to adjust the environment. And that’s where accommodation and acceptance comes into place.
Meg:
Thank you. I really appreciate that shift. Let’s talk about affirming feeding therapy or responsive feeding therapy. What are some of the important principles, and what does that look like in practice?
Naureen:
Yes, absolutely. So, the way responsive feeding therapy is defined — and I’m taking this information from the white papers — responsive feeding therapy is an overarching approach to feeding and eating interventions, applicable to multiple disciplines and across the lifespan. And basically, there are five guiding values. Over the years, I realized that responsive feeding therapy has to be like the foundation. And we also do a little — we have to do a little more work. And what that means is that we need to be anti-oppressive, right. So, I have developed a framework which is an anti-oppressive methodology that is informed by social justice, education, and disability justice, critical autism studies, and also FAST studies. And so, I really feel strongly about anti oppression work because we have to challenge and dismantle ableism in order to support people who are disabled and people who are neurodivergent. So, we have to ask ourselves questions like, well, who is the therapy benefiting? Is there a hidden agenda? Who is really positioned as the expert? And are we really attempting to make eating more neurotypical? Like, is that really, you know, the goal?
So, the neurodiversity affirming model has five pillars. The first one is anti-oppressive, anti-ableist. The second one is leadership of those most impacted. Really, coming from disability justice work so our clients are really the expert in their own experience, and we have to really position those with lived experience as the experts. And acceptance, right. So, that’s the third pillar, so really focusing on increasing access to preferred foods and accommodations and how the environment might be disabling the child, and really exploring how we can accommodate the needs of those who have feeding differences. The fourth pillar is trauma-informed. So, we have to be more trauma-informed and that’s why doing a lot of that one-on-one work in setting up these play-based type of sessions can sometimes even retraumatized children who might have had other types of therapies before. So, really focusing on preventing those type of situations and working more with the parents and caregivers through parent coaching. And the fifth pillar is body liberation. And so, that’s really related to body autonomy, and also the right to be able to exist in our current bodies. And that includes bodies of all sizes.
Meg:
I couldn’t love that more. Can you give me a quick like, one or two word summary of each of the pillars?
Naureen:
Yeah, so the first one, I don’t necessarily have a summary of each pillar because the framework is like an accordion. So, like it can be applied to so many different — in so many different ways. So, the first pillar of the anti-oppressive, anti-ableist pillar, you know, the way I apply it when I give trainings, it’s really about dismantling the different frameworks, and challenging frameworks that currently exist. So, really moving away from this idea that eating has to look a certain way, and really challenging ableism. So, we’re challenging the developmental milestones when it comes to eating; we’re challenging this idea that people have to engage with food in a certain way. And so, that also means that we have to decolonize our practices. So, what does that mean, right? So, that means, well, really challenging this idea that Eurocentric diet is the best diet, right. There’s so many components and like aside — like, this can be like, each pillar, I can spend like an hour or like two days talking about.
The second one is leadership of those most impacted. So, that one really comes from the disability justice work. So, really positioning people with lived experience as the experts, right. So, not just including research, you know, and being more critical of research that is led by neurotypical researchers. So, positioning those with the lived experience as the experts, and learning from people with lived experience.
The acceptance phase, again, is really focusing on accommodation. So, understanding the social model of disability, so understanding how the environment and so different forms of oppression can impact eating, healthism, diet culture. You know, if we look at ableism, how that impacts eating. So, what does acceptance, you know, look like? What does that mean, right? And how do we fight for accommodations in a profession that really amplifies only one way of eating? And this is something I struggle with a lot with daycares, schools, right? So, accommodations when it comes to cafeteria, accommodations when it comes to the duration. A lot of the children I work with just don’t have enough time, right, because you either eat or you play. And so, some of the children’s or work with need more time to eat.
So, we’re not really exploring, you know, instead of just going straight to like desensitization — and I’m not pro-desensitization — but this is what’s happening, is we’re just trying to correct those behaviors without really looking at how the environment is impacting the person’s ability to nourish themselves. So, what does that look like? And then, trauma-informed.
And the last one is the body liberation piece. And, you know, there are a lot of anti-fatness attitudes also in the feeding world, like children who are in larger bodies are desensitized to foods like broccoli. If they eat any broccoli, they will be in a small body, right. And again, we know that this is not true. Like, bodies come in all sizes. And that’s always been the case. And so, really looking at how those attitudes also show up in the feeding world.
Meg:
I really appreciate you going back through those. I needed to hear it again, dismantling ableist frameworks, leadership of those most impacted, acceptance and accommodations, being trauma-informed, bodily autonomy and liberation. It is so helpful to hear you explicitly and intentionally apply each of those to feeding for us. I feel like this is a very hard question, given the breadth and depth of this, but if people have one overarching takeaway from our conversation today, what would you hope that that would be?
Naureen:
Yes. I really feel like neurodivergent people have very unique experiences with food and eating. And we really have to challenge this idea that those differences are bad and need correction. The invalidation and lack of acceptance, decreased access and lack of accommodation really, really exacerbates eating and feeding. And we have to really consider when we’re working with children, we have to really explore, are we really helping the child develop a healthy relationship with food and their body long-term? That to me is so, so important. And that means we have to be committed to anti-oppression more.
Meg:
Thank you so much, Naureen. Tell us what you’re working on now, and where we can find you online.
Naureen:
Absolutely. So, I’m always working on a whole bunch of different projects all at the same time, and that’s just my neurodivergence. And that’s what brings me joy. But I have been actually working on this course. It’s a course on supporting neurodivergent children with feeding differences including ARFID, and I’ve offered it twice this year and will be offering it again in September. So, I’m really excited about that. And I’m also on social media. So, I have the @RDSforNeurodiversity page on Instagram, and on Facebook and for my private practice, I have a page, Naureen Hunani Nutrition, on Facebook and on Instagram. And you can connect with me also via my site, so rdsforneurodiversity.com.
Meg:
I will link to your website, and your social media, and some of the other resources that you’ve mentioned in today’s talk on the show notes. Thank you so much for talking to me today.
Naureen:
Thank you so much for having me. And thanks for those wonderful questions.
[Ending music]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
