Challenging neuronormativity: Why the old rules don't fit with Caitlin Hughes

Laetitia: Welcome to The Neurodivergent Pulse where we explore the often misunderstood world of neurodivergence with experts, parents, teachers, and therapists. Grounded in lived experience, each bite-sized episode gives you something practical to try. I am your host Laetitia Andrac, AI expert, neurodivergent mum and founder of Understanding Zoe. This podcast is recorded on Dharawal country. I acknowledge that sovereignty was never ceded. It always was and always will be Aboriginal land.

Laetitia: Hello Caitlin. Thank you for coming on The Neurodivergent Pulse podcast.

Caitlin: Thank you for having me.

Laetitia: We are going to talk about neuronormativity during this podcast, and I'm very very keen on you sharing your perspective on this word. But before we start talking about this, I would love to give the opportunity to any of our listener to learn more about you, starting by sharing a little bit about yourself and what drew you into working on neuronormativity and challenging the status quo.

Caitlin: Yeah. I don't know if it's the same for you, but whenever someone asks me what I do, it's like my brain just goes completely blank and I completely forget who I am and what I do. But luckily, I've got notes, so I'll remember today.

Caitlin: So, my name's Caitlin. I'm a neurodivergent accredited mental health social worker. I'm also a supervisor and a researcher completing a PhD looking into neuroaffirming practice for autistic adults in mental health care. So, oh gosh, yeah, it's been a big journey, so I'll try and summarise. But essentially what happened is after a long time working in roles that kind of made me super burnt out, I decided one day that I wanted to go out into private practice. And I started working with these really cool folks, autistic folks and ADHDers, and going, "Wow, I really seem to vibe with these people," like I don't know, like what's going on here. Anyway, turns out I'm autistic ADHD. So, you know, but it was so funny. It was through my work I found out that I was an autistic ADHDer.

Caitlin: So, I guess lived experience is something that's a big part of my practice, and a big part of my research as well. And I think a big part of the work that I've been doing for myself as a professional over the last few years is really looking at my practice and challenging these neuronorms that I've been taught in my training, in my work experience. So yeah, it's been a bit of a journey.

Laetitia: I love it. Thank you for making the time today, because you're really an expert in all of this. So for anyone who's listening to this, maybe they're a parent, maybe they're a teacher, maybe they're even a therapist who may not have heard about neuronormativity, can you define a bit more about what it means? And why do you think all of those old rules actually no longer fit in the neurodiversity planning in our society?

Caitlin: Yeah. Firstly, I will say that if you want to do a deep dive, check out anything by Dr. Nick Walker.

Laetitia: Yes.

Caitlin: Excellent, excellent. Yeah, a real deep dive, but I will try and briefly summarise. So neuronormativity is the assumption that neuronormative ways of thinking, learning and behaving are the standard. So a lot of us neurodivergent folks, we've grown up feeling like we have to fit into a particular mould or a particular box, and a lot of those are built around understanding non-autistic and non ADHD brains and maybe how they function and show up in the world. So neuronormativity creates hidden rules around communication, productivity and relationships. So, you know, there's a lot of discussion, and even in the DSM it says that autistic folks have a deficit in socialising and communication, and it's like, hey, wait a minute, is it a deficit or is it just different?

Caitlin: So, when we are viewing things through this neuronormative lens, it's kind of like, okay, well, this is the standard, and if you're not matching that, then that means there's something wrong. Well, what we're saying is actually no. There's diversity in the population, we've got different brains, and we need to think about this a little bit differently instead of the stock standard version of how people think it's meant to be.

Caitlin: So in terms of these old rules, I'm hoping they're going to be old. I'm hoping they're going to be put on a shelf somewhere one day. But yeah, so they don't really acknowledge diversity, and unfortunately this can lead to a lot of harm, burnout and exclusion for a lot of neurodivergent people who constantly just feel like they don't fit in. And I think it's really important to shift this within ourselves and within society, so that there can be a lot more acceptance and acknowledgement that neurodivergent people need accommodations.

Laetitia: Yeah, I love it. And yeah, as you said, old being put on the shelf. But as we know, the shelf may be broken, and sometimes the old rules are coming back forward and it's like, ah, I thought we parked this. Why is it coming back? What happened with this shelf? Do we need to do something with it? It's really annoying.

Laetitia: So, talking about old rules and outdated models and so on, I just want you to share from your lived experience what you've seen as a social worker and researcher. What are the most common outdated assumptions you see in schools, in workplaces, or in your work in therapy, and how do they impact neurodivergent folks? I could share some from my own lived experience, but this is a podcast where I love to give the stage to the guests.

Caitlin: Yeah. So, I'm a social worker, so when I look at the world, I see everything as a system. Everything's systems, and I see patterns. And yeah, I think you could probably do a separate podcast for every single one of these, so this is going to be very brief.

Caitlin: But a few of the key places that I've seen these neuronormative assumptions popping up, it's particularly for parents and younger neurodivergent kiddos in school. Even the adults that I work with now, unfortunately, they often carry a lot of shame into adulthood, because there can be a lot of expectations around sit down, be quiet, give eye contact. If you're not doing that, that means that you're not respectful. If you're not complying with what I'm asking, then that's being rude or mean. And also, a lot of neurodivergent kids feel quite embarrassed, because sometimes this can be called out quite publicly, within the classroom and things like that. So, I think a lot of parents really struggle with wanting to support their child to thrive and be happy and be affirming. But also, when your child is going to a school that isn't neuroaffirming, it can be a really difficult place to be, kind of in between, going, "Oh gosh, what do I do here?"

Caitlin: Another one where it really shows up with a lot of my clients is in the workplace. So often a lot of people come to see me either when they're just about to go into burnout, or they've been through a big burnout, because of work or study, and they get to a particular age and everything's kind of catching up for them. And there is a burnout culture, a productivity culture, you need to have a certain amount of KPI outputs and all this kind of thing, and sometimes the way that workplaces are set up, the workflows, it doesn't work well for a neurodivergent mind. So because of the assumptions that are made due to these neuronorms, the systems are set up to cater for the neuronorm. So just walking into these spaces, often there can be this challenge where it's like, huh, wait a minute, this doesn't work for me, but also I don't feel like I can say anything, because often there's quite a negative reaction, whether that's from school or the workplace.

Caitlin: And the other one, my personal favourite, obviously this is my core work, is therapy as well. So when we as therapists are supporting a neurodivergent person through that neuronormative lens, we're going to be seeing deficits instead of differences, and that can make a massive difference to people's outcomes and whether they feel heard and seen, validated and supported. So as I mentioned before, it can be really harmful. It can cause a lot of shame for people. People can have a lot of mental health struggles, particularly as children, adolescents, right into adulthood. And also, when we don't affirm neurodivergence and the differences it brings, we are essentially exiling a big part of someone's identity and who they are, and telling them you're not welcome here. So you can only imagine how impactful that is to those people.

Laetitia: Yeah, definitely. And every time we speak about this, I really have like this kind of, I made a felted doll that represents my inner child, and very often I'm trying to give her some love, because even though I didn't had the labels, I had all the label, if that makes sense.

Caitlin: Yeah, it's lots of healing happens in the journey of neurodivergent adults.

Laetitia: And that's where gifting to our children a different ways of growing up will create something better. So let's move through that, actually the neuroaffirming way rather than neuronormative. So how can we nurture, and what is really different when we allow a neuroaffirming practice in the therapy? So I know that our speech therapist is amazingly affirming. Shout out to Mika. And when she comes into our house, she asks, where do you feel most comfortable sitting today? And sometimes it's sitting on the floor, sometimes sitting on the Swiss ball, sometimes sitting on the couch, sometimes sitting at the table, sometimes sitting under the table. So what could be examples of affirming practices that we wish to see more in schools, in workplaces, in therapy, that you've witnessed or experienced?

Caitlin: Yeah. So again, this is a very brief overview, and there is a lot of lovely research coming through from neurodivergent researchers around this area as well, as well as my research that I'm hoping to put forward. But I think it's helpful to pick up on a few different things to see whether a school, a provider, whoever, is leaning towards that neuroaffirming approach. A lot of people are still learning, a lot of professionals, a lot of schools, this is a big time of change. So sometimes it is kind of seeing if there is that move towards change.

Caitlin: But yeah, as you said, I think if someone is providing choice and options, I think that's a really good indicator. Also honouring difference, so again, looking through the lens of difference rather than deficits, also really highlighting and focusing on strengths as well. So obviously, as a neurodivergent person, there are challenges that come up, but not just focusing on that from a deficit lens. And also about reducing barriers in the environment and accommodation. So it's not, you're not just putting it all on the individual or the family unit to fix the child, or yourself, or the person. It's looking at the person and environment and going, okay, what can we adjust in this environment that might be able to assist as well.

Caitlin: So this can look like having a flexible structure, being really collaborative in their approach. And if they're autistic, always having those sensory considerations in mind, because oh my goodness, there's these little things that will just annoy you. So, you know, if it's the buzzing little light or whatever it is. So just, we're not going to get it perfect, and that's okay, but as long as we're keeping these things in mind, it's really important.

Caitlin: I guess on the flip side, if someone is operating, or a service is operating, from a neuronormative lens, they're going to be very much about control and compliance. There's only one way that they provide the service, or there's only one way that the person can show up in the world. So those are some red flags. So it's really important to support the person to be able to be their authentic self and not force that sameness, because that's what they've had their whole life. They've had people saying, this is the mould, fit it. And it's like, no, we got, like, throw them all away.

Laetitia: Yeah.

Caitlin: Don't need that anymore. It's like, who are you, and how can we support you to feel grounded and confident in yourself, and have these scaffolds and supports around you, so that you can, yeah, thrive and flourish.

Laetitia: I love that. And this is where, when you see one neurodivergent person, you have around them a whole ecosystem of support that's created if you want to break the neuronormative way of being, and the masking, which is actually my next question. Masking is often expected in neuronormative spaces, like a workplace, where I used to be a general manager in big data and AI in a big corporation. So I'm telling you, I went through the highly masking and the burnout. And so I've actually given away burnout, but what do you see as the hidden costs for wellbeing and identity in masking, to fit in this neuronormative box, or in this neuronormative expectation or mould? What have you seen as the hidden costs?

Caitlin: Oh, the costs are really high. I don't think if you're not a neurodivergent person, it would probably be really hard for you to understand how challenging it is to navigate the world as a neurodivergent person, particularly when you don't feel that there's safety to unmask and be yourself.

Caitlin: So masking means that you're hiding your neurodivergent traits to appear, like, someone within the neuronorm. And it's exhausting. A lot of people have anxiety around this, because essentially you're just constantly monitoring your tone, your facial expression, what you're saying, what you're doing. And you're just in this kind of fight or flight, particularly when you're around others. When you are operating in the world as, I guess I call it like an avatar, like it's you, but is it you? So it can result in a lot of disconnection to people's bodies, to their identity, to who they are, and particularly, a lot of autistic and ADHDers that I work with, once they get to their 20s, 30s, 40s, even 50s sometimes, they come to me and they go, "Caitlin, I don't know who I am." Like, I don't know who I am outside of this masking that I do.

Caitlin: And the other thing that can be really challenging as well, there's a lot of issues around this, so it's not the only one, but if you're someone who's highly masking, you may not identify as being neurodivergent, but also it might not be picked up at school, or by your family or parents, because by all intents and purposes, you're showing up in this neuronormative way. So, unfortunately, a lot of the time when it comes to, particularly, children getting engaged in support, it's because there's some sort of problem, and the school or whoever wants to fix this problem. But when it comes to being a neurodivergent person and masking, it really is about quality of life. And just because someone has the capacity to be able to mask, doesn't mean that they're okay, because it's like, peel back that mask and what you're going to see is a lot of anxiety, stress.

Caitlin: And I do a lot of somatic and trauma therapy, and the long term impact, it is so horrible, and people often have a lot of mental health challenges, and it can really impact on their body as well, because when you're not in touch with your body, often you won't notice those aches and pains and those emotions that pop up, and sometimes they go by the wayside. So you're foregoing your fundamental basic needs just so you can show up in the world with some level of safety and acceptance. So authenticity and acceptance are massive protective factors for neurodivergent people, and that is so important, because if you're someone who isn't neurodivergent and you've never felt unsafe to show up, just imagine every day feeling like you have to be an avatar of yourself. It's really, really challenging.

Laetitia: I thank you for sharing all of this, and I really love all of the connections that you've made between the masking and the long term effect. And I'm sure some of the listener may be wondering, so how can I create this sense of safety and acceptance in my classroom, in my office space if I'm a leader, in my home if I'm a caregiver of a neurodivergent kiddo? How can I make sure that I crazy sense of safety, and I am not myself, through internalised neuronormative expectation, reproducing things and then creating this? So, any tips or advice for those different characters in terms of how we can create this sense of safety and acceptance, to avoid this long term impact of masking?

Caitlin: Yes, yes. So I think, particularly if it's a parent of a child, sometimes, because often a lot of the time, I don't see children as much these days, but I used to do a lot of work with children and families, and the parent or parents would bring the child and they'd say, oh, we're here because the school says that there's an issue and we need to come and see a therapist to support us to get some strategies, or whatever it is. And then it turns out that the kiddo might be autistic, ADHD, or both, some combination, and then the parent starts going, hm, that, I do that, I do that, that's just normal, right, everybody does that. And something clicks in their brain, and it's like, oh my gosh, I think I might be neurodivergent as well. And a lot of parents, they often go through a really challenging time, because they're trying to be there for their child, but also they need space to show up for themselves, because there's a lot of stuff that they're realising that perhaps hasn't been addressed or processed or acknowledged.

Caitlin: So, if able, I think it's really important for parents to also get support through that journey as well, if they can. But in terms of the parent showing up for the child, there's no such thing as perfection. I think sometimes a lot of parents put pressure on themselves, and I totally get it. It's like this precious, lovely child that you adore, and of course you want the best for them. But at the end of the day, it's really about having that collaborative, curious approach, can be with a child, can be with an adult, not every neurodivergent person is the same, so just seeking to understand them, their needs, their wants, their desires, because at the end of the day, sometimes people are like, I don't know what my needs are, because I've been foregoing them for years and years and years, I don't even know anymore. But just opening that opportunity to reflect and to have that option.

Caitlin: Also checking in with the person and making sure that they're feeling safe. If there's anything that can be adjusted, like you said, with your speechie, that comes in and it's like, okay, where would you like to sit today? And yeah, trying to have some flexibility, obviously it can be really challenging in some settings, but even just small little adjustments can make a massive difference for autistic people. Just off the top of my head, sometimes neurodivergent parents or neurodivergent adults, whether in school or the workplace, they've got to fight to be able to use noise cancelling earbuds or noise cancelling headphones. And there are some places that are more supportive of that and others that aren't. And it makes such a massive difference. For some people it can be the difference between being able to get through a school or a work day or not, and being able to actually engage in a way that they're enjoying themselves, and they're getting something out of this. So I think it really just starts with those small little moments and things, and having that collaborative and curious approach, and there isn't one set way, it's really about attuning to that person as much as possible, particularly children.

Laetitia: Thank you. Thank you for sharing that. And definitely having this curious mind and holding space for what are the needs, the wants, and really having this conversation is really powerful. And I know that sometimes I realise that I act from this neuronormative way, when I'm like, okay, let's brush our teeth, don't want to today, because of the sensation of the toothbrush, and we tried so many, we tried different toothpaste and so on. And I actually spoke with a dentist who specialises in neurodivergent folks, and she explained to me that it's okay if you don't brush your teeth every day. But I had to speak to the dentist, because my neuronormative brain was like, if we don't brush our teeth two or three times a day, we're going to get cavities and it's going to be dramatic, when actually, no. So if you struggle with those sensations, what about we change that way?

Laetitia: And I noticed sometimes how, when I was younger, I hated combing my hair. And I'm still not combing my hair. And I'm not putting makeup on because I hate the sensation of all of this. Yet, for a long time in my corporate career, I had to do those things because I was trying to fit in. And now I know I'm in the privileged situation of running my own business, so I can show up however I want. And if I want to be in my pajamas, which I did a few podcast interviews in my pajamas, I can. I don't. But I want to, so many more people, and I know there are so many other things where I am still falling into the neuronorm. So I'm learning to do better, and thank you for today.

Laetitia: So let's go through this vision and advocacy question before the last question. If you had one message for policy makers or professionals on why challenging neuronormativity matters, what would it be?

Caitlin: Well, firstly, I would say that enforcing neuronormativity is systemic exclusion. It's systemic exclusion of neurodivergent people, bodies, minds. And it's really important, because it means healthier bodies and minds for neurodivergent people. It means that neurodivergent people are more able to show up, to learn, to work, to enjoy their life. And I think just having more of an understanding of diversity and difference, I think that's better for everyone. Everyone is unique in their own way, and having an understanding of different experiences, including neurodiversity, is really important. We don't want to make assumptions about people, but I think there is a lot of benefit on the individual level, but also systemically. And as I said, when it comes down to it, are there some big issues that need a big move and a change? Yes. But also, sometimes it can just be these little things that can make such a big difference. It's just, you have to hold the space or open the door for those.

Laetitia: The little steps, right. And that's where we keep saying that we can change the system with little steps. And I had the chance of listening to Ronni Kahn again talking, I don't know if you know Ronni Kahn from OzHarvest, which is a big NGO in Australia, and she was sharing how, when you want to extinguish a fire, if we all have a little spoon and we put water, and millions of us are putting water, then we will extinguish this fire. And this is really it. When you feel like you don't have any power to change things, just by those little actions of allyship and advocacy, you can definitely extinguish this fire. And that's why we need to come together even more as a community.

Laetitia: Okay, so what's one ritual, or item, or practice you turn to when you need to recharge?

Caitlin: Oh, I love hanging out with my cats. They're, oh, I just love it. The purr, the soft, everything. They're so lovely. They're like my little shadows, they just follow me everywhere. And one of my cats, Fifi, when I'm stressed, she's like my emotional support cat. She'll sit down, and I'll sit down, and then she'll sit on my lap. So she's just like, "You need to take a break, Mum." Yeah, it's really cute. It's really funny.

Laetitia: They're the best. Like, honestly, animal therapy is really something that people underestimate, but they're the best. Like, they can feel everything. That's beautiful. So, how can people learn more about you, connect with you, work with you, Caitlin?

Caitlin: Yeah. So the best place is my website, that's www.catharticcollaborations.com.au. I also have a podcast called Divergent Dialogues, so you can find that on Substack, or Spotify, or any of the other places that the internet puts it. And also my social media handle is Cathartic Collaborations.

Laetitia: Amazing.

Caitlin: And I'm like, I have too many social media accounts. I'm basically all of them.

Laetitia: All of them. We'll put all of this in the show notes so everyone can connect. Thank you so much for coming today on The Neurodivergent Pulse.

Caitlin: That's right. Thank you so much for having me.

Laetitia: That's a wrap for The Neurodivergent Pulse. If this helped, follow the show and leave us a quick review on your favourite platform. You can even share this episode with someone who needs it. You can learn more about our platform at understandingzoe.com.