Transcript for
Higher weight and neurodivergence in childhood

Annie Crowe (00:00):

The importance of embracing the neurodiversity paradigm, which is the concept that all brains are created equal, and that the diversity of neurobiology is actually a good thing for our society and evolution.

Narrator (00:17):

Welcome to the Emerging Minds podcast.

Bec Edser (00:22):

Hi everyone, and welcome to the Emerging Minds podcast. You’re with Bec Edser, and today I’m joined by child and family partner Annie Crowe. Annie is a proud autistic, ADHD-er who wears many hats. She is a lawyer, the producer and host of the Princess and the Pea Podcast, the founder and chair of not-for-profit Eating Disorders Neurodiversity Australia, and is a strong advocate for neurodivergent inclusion in all areas of society. Annie is also a parent and has over two decades of lived experience of an eating disorder.

(00:58):

In this episode, we discuss Annie’s experiences of accessing services related to her weight. As we’ll be talking about eating disorders, please be aware of your own emotional safety while you listen to this podcast. If at any point you find you’re struggling, please talk with a friend, colleague, your supervisor, seek help, or you can call Butterfly’s National Help Line on 1800334673 or email [email protected].

(01:30):

Emerging Minds has connected with Annie through the development of our e-learning course, Supporting the social and emotional wellbeing of children with higher weight. If you’re interested in this course or any other Emerging Minds content, please visit us at www.emergingminds.com.au. So welcome, Annie. Thanks for joining me today.

Annie Crowe (01:51):

No worries, thanks for having me.

Bec Edser (01:53):

To start with, I’m aware that you were an adult before you realised that you were neurodivergent and you were diagnosed as autistic and ADHD at age 28. Can you start by telling me a little bit about this?

Annie Crowe (02:10):

Yeah, absolutely. So I’ll give you a list of what I did find out at 28 that I’ve obviously been all these things my whole life, but I only got the labels for them my late twenties. And so I’m autistic, ADHD-er, I like using the term ADHD-er, with a PDA profile, which is pathological demand avoidance, seen as a subset of autism but some argue that it’s also linked with ADHD. And I’m dyslexic, dyspraxic. And I also have hypermobile Ehlers-Danlos syndrome, which is very commonly co-occurring especially in the autistic community and it’s a connective tissue disorder and they all interlink. I sort of include my Ehlers-Danlos a part of my neurodivergence because a lot of the symptoms of it are very common in neurodivergent people. So I thought that gives you a bit of a picture of who I am and that’s my identity and I’m proud of it.

(03:02):

And I do a lot of work in this space trying to help others understand the importance of embracing the neurodiversity paradigm, which is the concept that all brains are created equal and that the diversity of neurobiology is actually a good thing for our society and evolution, just like biodiversity, yeah. So I actually use augmented communication, I use an AAC device sometimes which you won’t hear on this podcast, but I have been recently learning how to use that, and I wish I’d had it in childhood because I spoke early as a child.

(03:40):

Everyone thinks autism, they speak late. Delayed speech, delayed everything. I was early to all my milestones. I walked at nine months and I could sing the Australian national anthem before I was three. And yet I do have verbal challenges and sometimes I find it hard to find the right words or the words that come out of my mouth aren’t exactly what I mean. And that’s sort of a, it’s mixed up in my neurodivergence. So I like to point that out because I also like to normalise the option of not speaking. Some people don’t have that option and are non-speaking, but just because you seem like you are highly verbal, doesn’t mean you have to. Anyway, I’m going off track.

Bec Edser (04:18):

No, thank you Annie and I think we can all understand you have a very complex identity, which I’ve heard you describe as being neuro-spicy, which I think is a beautiful way to think about it.

Annie Crowe (04:32):

It’s very tasty, isn’t it?

Bec Edser (04:34):

Yeah, so looking back, could you talk to us a little bit about how your unidentified neurodivergence impacted your weight and relationship with food as a child?

Annie Crowe (04:47):

Yeah, absolutely. This is super complex. For me, it was everything from my sensory differences. So a lot of people think sensory needs and they only think of sensory aversions, but sensory is really complex because if you have a sensory processing disorder or one of those things, you can be sensory seeking and you can be sensory avoidant. And this very much affected my relationship with food because I was very sensory seeking of the extremes. So very hot, very cold foods, very salty, very spicy, I didn’t like any kind of thing in the middle. I didn’t like the bland stuff and there’s a lot of autistic people that only like the bland stuff. And that’s, I guess important to point out because we’re so different within our own culture and community.

(05:31):

And avoidance being more the commonly spoken about, picky fussy eaters so not liking things like fruit and veg because they’re not consistent in flavour and texture. And we don’t like inconsistency, or some of us. I will caveat it that a lot of this is talking from my own experience with a touch of all the advocacy I do, but I will sound like I’m speaking for the whole community. I’m not, but I don’t want to have to keep prefacing that so I just thought-

Bec Edser (05:55):

Sure.

Annie Crowe (05:56):

I’d bring that up. So yeah, fussy eating and picky eating is commonly talked about, especially with autistic kids. And ARFID is a common eating disorder associated with just being autistic.

Bec Edser (06:06):

Can you explain what ARFID is?

Annie Crowe (06:08):

Yeah, so that’s avoidant and restricted feeding and eating disorder, which I have never have been diagnosed but highly identify with, as do a lot of autistic people. This is non-medical explanation, but I think of it like anorexia without the body image issues and without actually wanting to affect your weight. It’s just the similar restriction of food, but it’s not weight or image based, it’s just maybe sensory based. And sometimes ARFID can turn into anorexia because if you’ve got a kid that has very fussy, picky eating and is then getting further controlled by either being forced to eat more of what they can’t tolerate with sensory needs or maybe their weight isn’t good because they’re not eating the right kinds of foods and then they’re forced to restrict through dieting, that is a very slippery slope to full blown restrictive eating disorders like anorexia, bulimia, all those things.

(06:58):

Which is why I’m really passionate about this area because I don’t think, I know we’re a very vulnerable population. The stats coming out recently from the proper research, not just my anecdotal community, is that as high as 30% of those with eating disorders are neurodivergent, and one in three people with anorexia are autistic. So the restrictive and repetitive behaviour is a part of the autism criteria and that can show up in food with, we call them same foods so autistic people like eating the same food. Everyone has different choices of same foods, but it’s foods we can eat on repeat and sometimes we eat it on repeat so often that we do this thing called food jagging, which is where we don’t want to eat it anymore ever, or anymore ever for a certain period of time, and I’ve experienced that as well as a kid and as an adult.

Bec Edser (07:46):

That’s very familiar to me with my son.

Annie Crowe (07:49):

Is it? Yes, there you go. Exactly. Yeah, and so again, the avoidance of new foods, having a very visceral memory of food associations so they may not have tried a food before, but not want to try it because it looks, smells, feels anything like a food that they have tried that they’ve had a sensory aversion to which is another thing to keep in mind. And then the other thing I always like to mention with neurodivergence is a lot of people hear about black and white thinking and how autistic people can be very rigid thinkers.

(08:21):

And I hate those terms, they’re very ableist, but we are rules based thinking and we like systems so we can be susceptible to hearing things like, “Oh, that chocolate’s bad for you, that’s a bad food.” And, “Oh, this lettuce is good for you.” So all of a sudden something that you had no harm in saying is now giving us shame when we eat the chocolate, or we avoid it and then crave it and then binge on it. And then when we eat the salad, we’re almost feeling like good little people even though we hate it. It’s just, it’s complicated.

Bec Edser (08:55):

So interesting, yeah.

Annie Crowe (08:57):

Language is so important. And because I like to talk about the double empathy rule here because the double empathy rule is basically that autistic people actually don’t have social problems, it’s just that we socially communicate differently to neurotypicals and that’s important because the way you are speaking might not be the way it’s being interpreted. And as a kid it’s hard to articulate that. There’s no way I could have explained all this to you as a kid. I probably couldn’t have even explained it to you within a few months of my diagnosis a few years ago. But now that I’ve done all the research I have and spoke to all the experts that I have, both lived experience experts and research medical experts and pulled all the pieces together, now I have the ability to articulate this and that is powerful.

Bec Edser (09:43):

Thanks Annie. It’s so interesting hearing you talk about this and what we’d like to hear is what do you think practitioners need to be more aware of when they’re working with neurodivergent children around sensory issues and impacts on meal times and their food choices?

Annie Crowe (10:01):

So I think really important with sensory stuff is that it’s not a choice. So exposure therapy is often harmful to people with sensory needs. If you have a child who doesn’t eat a certain food or a bunch of certain foods and you try exposure therapy, that’s not going to have a good outcome. So the types of things that can happen there is one, maybe it does look like it’s working and it does for a while, but then it backfires. And that can be a very much a foreign response where they’re trying to make you happy because they know you want them to eat more, but it’s really, really, really uncomfortable for them. Or they just get more, I don’t want to say defiant, but really pushing back and avoidant because they’re feeling really pressured to do something that is really uncomfortable.

(10:47):

And the other thing to note is that most of us don’t actually know how to articulate this discomfort. It’s not easy to say, “Oh, this food makes me uncomfortable,” or, “It hurts me,” or, “I hate it.” Other than just having a visceral aversion to it, it’s very hard as a child to articulate that you have sensory needs. So I think that nuance needs to be kept in the mind of practitioners when they are assessing kids and figuring out what’s behind the behaviour. Because all behaviour is communication and your interpretation or a neurotypical’s interpretation, and we have neurodivergent practitioners, which is fantastic because I think they’re adding so much value to all the professions in terms of bringing that link between lived experience and professional expertise and academics.

(11:32):

But if you are interpreting the behaviour of a kid that you don’t know is neurodivergent, or even if you do and you don’t understand that, which many don’t still, then you can misinterpret it and that will impact your treatment of it. So you really do need to understand it and treat it with respect. If a child feels, perceives that they’re going to be judged or criticised, they will not generally open up. And that’s a big problem because the only way you are ever going to get to the bottom of knowing how to give them adequate support is if you can get them to truly open up and feel you’re safe enough to show their true vulnerability and their neurodivergent identity to you.

Bec Edser (12:12):

Yeah, sure. That’s really valuable information for practitioners, thanks Annie. Can we talk about what primary school was like for you? What age did you become aware of body image and that you didn’t quite fit what’s socially considered the norm in primary school?

Annie Crowe (12:31):

Yeah, so I feel like I was always, as young as I can remember, conscious of my body and I’m not sure how much of that was in a, I’m different or bigger than the norm because I wasn’t much different until probably very late primary school. But I definitely remember feeling like I was, even when I wasn’t. And vividly, I remember my fourth grade disco, I was wearing my favourite Hawaiian mumu. I had my third and fourth birthday in Hawaii and it was way too big for me then, but it fit me when I was in grade four and I wore it to my disco and I loved it. And afterwards I went to my grandparents’ place and my great-grandmother, who’s passed away now, made a comment about my puppy fat. And as a kid, that’s very literal. I took that in a very negative way and she mostly meant it in a cute, kind way I think now.

(13:25):

But that was the first time that it was truly brought to my mind that I was potentially not normal and bigger, and I wasn’t even then. So it was actually not long after that I broke my foot in a running race, so I had to go in a wheelchair for a period while I was in a cast. And as you can imagine, I was very restricted with movement and my eating didn’t change that much so I started to gain weight pretty rapidly. And that was really the first period where it became very obvious to me and I became very sensitive to it. But then when I got better, I got back into my favourite sport which was figure skating. And I was very good at it and it was absolutely my special interest, if you want to call it that. And the weight kind of became less of an issue until it didn’t again.

(14:14):

And when I was in my last year of primary school, I had to stop figure skating because I had Osgood-Schlatters in my right knee, which who knows if it was, or just the Ehlers-Danlos, but it’s basically the growth plate of my knee was actually coming off, the cartilage was going to come off the bone or something ridiculous. So the sports physician was like, “You need to stop skating now, and all sports,” but my mom still let me play social netball. But I not only went from figure skating 10+ hours a week to not doing that, but I also for the first time in my life felt what I would call truly depressed because my absolute passion in life was taken away from me and I had nothing to replace it with. So the weight piled on because not only did I not change my eating, so I was eating at a competitive fit level and I didn’t all of a sudden start eating less because I had less energy output because what primary schooler knows how to do that.

(15:07):

But I also started eating probably more of the sensory seeking stuff because that’s the main way I emotionally regulated. People talk about emotional eating like it’s the devil, but it’s the first coping mechanism all humans learn when we are born and we breastfeed or bottle feed, it’s how we emotionally regulate. So it’s actually not that bad, it’s more if you don’t, as you grow, if you don’t get other ways to emotionally regulate, then you’re in a bit of a pickle, so that was really the big turning point. And I did, I got bullied for my weight. I got bullied for being neurodivergent but not knowing it. And those things are very intertwined because the weight was something visible that people could put their finger on, whereas my neurodivergence or my quirkiness or whatever you want to call it, it was really hard to point out or to pick on because it wasn’t tangible so I think I was an easy target for bullies once I had the weight.

Bec Edser (16:05):

Did anyone support you through that time when you were being bullied?

Annie Crowe (16:10):

I mean, yes and no. My parents, when they were aware of it, were very, very kind and tried to help me and be supportive. Even though they encouraged some dieting, mostly because I was so distressed at my weight, they also tried to send me the message that they loved me no matter what I looked like, but I didn’t tell them most of it. There was one particular time, I think I was in year nine where it was the first time I had openly said I had a crush on a boy.

(16:40):

And one of my friends told someone, and him and his mates drew a picture of a whale chasing a little stick man and wrote my name on it and gave it to me and I was so crushed. But equally, I kept that drawing. I still have it and now, I look at it very differently. I just realise how broken they were in having those views around body image. And I never told my parents, I was so ashamed. I didn’t tell them most of the weight-based teasing, which was mostly in grade eight, nine, and mostly from boys, surprisingly. Girls were more subtle in their bullying, it was more that social dynamic stuff.

Bec Edser (17:28):

What would you have liked to have had happened and what kind of supports would’ve been helpful?

Annie Crowe (17:33):

I think, well, I mean one thing I do like, the Butterfly Foundation have been doing some body image stuff with schools and I think that’s starting to pick up steam because I think this is such a systemic issue. I had to do PE all through school where I was weighed in front of friends and where they had Healthy Harold come and talk and no one ever, everyone talks about healthy food and healthy exercise, but they don’t talk about the accessibility of those things and how having a higher weight or any different weight does not make you less worthy of being a respected and valued human, which is how many fat people are treated, and I say fat in a fat positive way. I got taught all through school how bad unhealthy eating was and how bad it was not to exercise, but I never got taught how to love myself and how to accept any differences, whether that’s body, skin colour, brain type, all the differences.

(18:39):

And that is a huge issue because we’re sending kids into those schools and these little kids that are drawing whale pictures, they’re just practising what they were preached. I don’t blame those boys, I blame society and societal barriers to acceptance and diversity. They were just basically saying what they’d heard elsewhere and a lot of these things are well-meaning, but the harm needs to be pointed out and considered. And I think when it comes to parents and practitioners, I think we really need to start questioning what it is that you want from your child. If they’re at a higher weight and maybe they’re distressed about it, maybe they’re not, maybe you are, regardless, what do you want to do about it? Because if you want them to not be distressed by making them lose the weight, I think that’s a problem.

(19:30):

I think that’s a big problem because the stats are very clear. 95% of diets fail. And what I mean by that is 95% of people who lose weight on any diet put the weight back on and then some more within two to three years. What the weight needs to be saying to parents and practitioners is that, is there something else going on that we could support? Not to support to lose the weight, but to support because the weight is a sign that something isn’t quite right. The weight loss should never be the intention. Restriction should never be applied because kids are growing and restriction is toxic and diet culture is toxic. And if you’ve got a neurodivergent kid to top it off, then they are so much worse off if you add any of that kind of judgement restriction into the equation. They are so much worse off because they are so much more likely to get a full blown eating disorder.

(20:25):

And weight and health do not go hand in hand. You can be healthy and overweight, you can be unhealthy and skinny. We are currently putting the value of weight loss above the value of general health and life, which is so, so problematic because there is no way I would’ve had an eating disorder if I wasn’t actively told by multiple health professionals to restrict. And when I did restrict, I was praised by society and by these health professionals. Absolutely praised and God it felt good, but then as it always would, I’d gain the weight again and I would feel even more full of shame, and even more full of personal failure when that’s not a personal failing. That’s a failing of diet culture and society not checking their ableism and fat phobia.

Bec Edser (21:15):

Do you think any of the practitioners you saw as a child understood how to treat co-occurring neurodivergence and higher weight?

Annie Crowe (21:25):

No, not at all.

Bec Edser (21:26):

What would you like? Yeah, what would you like to see done differently in treatment for neurodivergent kids?

Annie Crowe (21:32):

Yeah. Honestly, I don’t think currently they do very well. There’s only a selection, a small group that I think are doing enough. The autistic people you see thriving are not thriving because we’ve had all the interventions that you can imagine. We’re thriving because our loved ones and ourselves have accepted our neurodivergence, and we’ve learned how to create an environment at home, at work, at school that supports us. But sometimes that’s really hard to do and there are a lot of privilege and barriers to doing that, but you’re going to get so much luckier doing that than you are trying to change an autistic person. And I think that’s really important in terms of where I see healthcare heading and both, when I say healthcare, I mean disability services. Like if you’ve got kids on NDIS seeing speech pathologists and OTs, and I think they all have their place to support figuring out what environmental supports these people can use, doing a sensory profile and learning what accommodations can be made versus what they’re fine with.

(22:39):

And empowering the autistic child or individual to make those decisions and to feel like they’re being respected. I really want to see this shift towards neurodiversity affirming healthcare. And from a weight perspective, I think that that means you can’t separate the two regardless of neurotype weight treatment I think is so highly problematic in general in how so many doctors are encouraging restriction and so focused on scaring the world into the horrors of the “obesity epidemic” that they’re missing the fact that that’s not the problem. The problem is the trauma and the stress and the weight cycling and that is so much worse for your health than living in a large body, so much worse. And yet, it’s not talked about. So let’s stop forcing kids to control their weight, and instead teach them how to embrace who they are and figure out how to set up their environment to help them thrive, whatever that thriving looks like to them.

Bec Edser (23:44):

Research shows that a high proportion of neurodivergent kids have undiagnosed, neurodivergent parents. Would you like to comment on the possible implications this has for practitioners working with neurodivergent and higher weight kids?

Annie Crowe (24:01):

The studies are out there that neurodivergence is highly genetic and it’s becoming more and more obvious that that’s a thing. And some people even argue that the fact that it’s not saying that it’s completely genetic is that so many are undiagnosed. So whenever you see a neurodivergent child as a practitioner, you should probably be assuming that there may be undiagnosed neurodivergence or diagnosed, but highly likely undiagnosed in the parents. Let’s say you do have a neurodivergent parent, identified or not, you need to be aware that they’ve got a lot of the similar challenges of the kid. They may not be as overt, they may not be as obvious, they may not be as aware of the similarity, but generally if they’re neurodivergent, they will have a lot of similar challenges.

(24:45):

And on top of that, as an adult, you’ve also got so much more demands in terms of you are the one who buys the groceries and works and cooks and meal plans. And if you’re neurodivergent and you have executive functioning challenges, that is very hard. So if you’re a practitioner giving homework or any kind of instruction to a family for their child and you’re not keeping that in mind, you’re setting them up to fail. So I think it’s really important to realise that if you’re dealing with a child who has neurodivergent parents, you really need to be mindful of what you are putting on those parents to do and also how you’re speaking about those children to those parents.

(25:26):

If they’re neurodivergent and they don’t know it, and you speak to them about their child in a very pathologizing deficit way that a lot of health professionals are trained in, that can trigger a lot of shame and a lot of not so great emotions because they probably identify with a lot of what you’re saying. So I think that’s also important, and it’s just why it’s even more important to be putting a neurodiversity affirming lens on all healthcare and all disability supports, because if you’re not doing that, there’s just so much, mostly unintended harm that’s happening.

Bec Edser (25:59):

Thanks, Annie. I’ve really enjoyed chatting with you today. Thank you for generously sharing all your insights and expertise with us. Remember, if you are interested in our Supporting the Social Emotional Wellbeing of Children with Higher Weight eLearning course or any of our resources, please visit our website on www.emergingminds.com.au. Thank you for joining us today.

Annie Crowe (26:30):

Thanks Bec.

Narrator (26:32):

Visit our at website at www.emergingminds.com.au to access a range of resources to assist your practise. Brought to you by the National Workforce Centre for Child Mental Health, led by Emerging Minds. The National Workforce Centre for Child Mental Health is funded by the Australian Government Department of Health under the National Support for Child and Youth Mental Health Program.