Interview between Speaker 1 (Meg) and Speaker 2 (Laura Hellfeld)
Episode 54
[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 54 with Laura Hellfeld. In this talk, we go into so many important topics, including the relationship between PDA and eating. If you aren’t sure what PDA is, we talk about that on the episode as well. We also dive into how pica, or eating non-food items, can present in PDAers, including Laura’s personal experience with pica. We explore the relationship between picky eating and eating disorders for Autistics, the role of Ehlers Danlos, and so much more. Laura brings us back over and over again to the foundation of positive mental health and long-term wellbeing as the most important outcomes of our work.
I’ll tell you a little bit about our guest. Laura Hellfeld is from the US, but working as a registered nurse in the UK. She has her master’s degree in nursing. She’s a public health nurse, a clinical nurse leader, and a sleep practitioner. She’s a late-diagnosed autistic and an ADHDer with a PDA profile, and she’s also the parent to neurodivergent kids. There is so much important insight in this conversation that will profoundly impact how we support our autistic clients and PDAers in addressing — or sometimes not addressing — their picky eating. Here’s the interview with Laura Hellfeld.
Hi, Laura! Welcome to the podcast.
Laura:
Hey, Meg. Thanks so much for having me.
Meg:
I am so excited to have you here and continue this conversation about neurodiversity-affirming approaches to feeding. I want to start with your story, Laura. Can you tell me your own story around autism, food, and the work that you’re doing?
Laura:
Yeah, I’m a nurse consultant and I work to support people like myself and my kids. And I do it through a variety of topics, including food, and hence our chat today. Food, for me, became really at the forefront of like, all my thinking and my day-to-day. When I was a preteen, it was timed with a change in school. And there was a really big step up in how hard the coursework became. And I was also athletic and was on multiple teams, and I also loved community service. So, I was involved in a lot of clubs. So, I was busy. It was a very rigorous schedule. I really enjoyed all of it, but it was very demanding. And I found that I became really highly selective about the food that I would eat, to the point where it became like this shortened list of foods that I could accept. And if I didn’t have access to those foods, I became incredibly anxious. And this was a really big problem, because like I was saying, I had this very rigorous schedule; I wasn’t home very much. So, I didn’t have access to the foods that I felt like I needed to eat. And so, as you can imagine, I ended up losing quite a bit of weight. It was — it was really hard, because I felt really out of control. I didn’t understand what was happening. I knew my peers didn’t really eat like me or want to eat like me, but I didn’t understand where this was coming from.
My support — and support is a very generous term for it — back then started off with a pediatricians visit. This was back in the States. And really, for years, it was the same thing over and over again, in a variety of settings, with lots of different health care professionals, of weighing me and measuring me. And that was the huge focus for them. And I think their goal was based off of what size I was. And there was this overarching — I felt like it must be a motto that they’re given or something. But it was said to me so many times to the years of, “You don’t need to do this. You’re not overweight.” And that could have been probably — nothing that I think could have been said to me that was any more unhelpful, to be honest with you. That was by so many different professionals. It was incredibly unhelpful.
And then really unfortunately, and I didn’t have the language as a kid to understand just how fatphobic that was, and really how damaging that was to hear. And I actually have a very strong memory of being weighed by a nurse. I actually really remember like her hair, and what she was wearing, and how strongly she smelt of hairspray. And she was weighing me and she looked at me and said, “You know, just, you really need to gain weight. You really need to gain weight. But not too much weight, because then you’ll be overweight, and we won’t like that.”
Meg:
Wow.
Laura:
And that has stuck with me now. I mean, decades on. And I look back and I think, oh, I know they didn’t really understand selective eating. And I know nobody quite understood that I was autistic and PDA back then. But that feels so off the mark in the support in what should be said to a young person around their body size and when they’re struggling.
Meg:
And there’s so many assumptions there, too, that were just incorrect for your experience of eating.
Laura:
It was. And that has been just years of misunderstanding them for myself, because right away, I was told that I was anorexic because I lost weight. And I went, oh. I just — it didn’t come together for me. I hadn’t heard of it before. And when they just were describing to me of that I was losing weight because I was trying to restrict my eating around wanting to be thinner. And when this first happened, I really just felt like, wow, that just doesn’t fit with my experience. And just before this, the summer before, I was on a number of these really cool athletic teams. And I remember thinking, “Wow, I feel so strong. Wow, I feel so fast. And I’m going to be going into this new set of coursework that’s high level,” and like, I remember feeling really proud about myself and like what I was trying to achieve and what my body was doing. And I had never weighed myself. I hadn’t thought about it.
So, and through the years outside of my professional time with people, I’ve tried to connect with a lot of people to understand, to better understand what happened. And when I’ve connected with people who their experience is anorexia, we’ve had discussions where we go, “Gosh, it’s very different. And I hadn’t been able to put my finger on it. And I didn’t really understand.” And it really took into adulthood years and years later, of going, “Oh, okay. I’m autistic and PDA.” And I was a very highly selective eater. Still a selective eater. And unfortunately, the support I needed at the time was not there. And therefore, I went through years of struggling with food that I just didn’t need to.
Meg:
Absolutely. I want to circle back around in just a minute to the connection between PDA and food. But before we do that, I want to keep following your story. So, you’ve walked us through sort of adolescence, young adulthood, how providers were misidentifying your struggle with food, and being — at best — unhelpful, at worst, very harmful. Where did you go from there? How did you get from there to where you are today?
Laura:
It wasn’t through professional help. And it’s kind of a joke between me and my husband. But it’s also very true. So, we started dating quite young, as teens. And we joke that he’s my accommodation. And with understanding PDA, I feel very safe with him. It’s that co-regulation bit of there’s no judgement on how I eat, how I need to eat, how we go through life. We went to separate universities, and then same grad school, but I was like on night shifts and all that kind of stuff to where we didn’t always have these meals together. So, there just wasn’t this pressure to have to eat like somebody else. And he is — I mean, usually, to his credit — he is so even keeled. He deals with stress so lovely. He’s just wonderful to be around. And I think that safety bit, for me, is that huge piece of PDA. When I feel safe, when I feel regulated, I can eat. And also, moving into older years, I’m in charge of my eating, I can go to the shops and get more of it. My work is very much around making sure that if I’m going to be out of the house, I bring food with me that I know I can eat. The hugest piece I would say is being integrated into the autistic community and just understanding myself, and giving myself the okay to eat in a way that meets my needs.
Meg:
I love these themes of acceptance, safety, autonomy, that these are the goals. These are the foundational goals before we can work on anything else that you were able to find in your life with your partner. I’m curious about your move into your professional career around food. And before we even go there, I want to ask, did you come to realize you were autistic as an adult?
Laura:
Yeah. I think the very kind of stereotypical what we like to think of ourselves as super unique. At the same time, I followed the pattern of so many other people my age where it was with our oldest kid that we went, “Oh. Okay.” [Laughs]
Meg:
Yeah, it is so common.
Laura:
Massive lightbulb moment.
Meg:
Yeah.
Laura:
And it’s like, oh, okay. I think for me, too, it was a bit confusing, because I’m autistic, ADHD, and PDA. And it makes sense in my life and the areas I like to work in. It was always this dichotomy. And it was — and I feel like that in my day-to-day. I understand I don’t have two brains or parts of my brain that’s ADHD and some parts that are autistic. But sometimes they feel like they’re on my shoulder. Like, ADHD is like yelling things at me, and autism is like trying to make that into a nice pathway, linear pathway. And I think the two of them together made it difficult to identify me at a younger age.
Meg:
Laura, if you didn’t already have such a robust career, I would say I would really like to read that children’s book about your experience of ADHD and Autistic on your two shoulders. If you just have a moment to write a children’s book in your spare time.
Laura:
Sure.
Meg:
Right.
Laura:
I’d totally love to.
Meg:
Your oldest child was diagnosed autistic. You looked at yourself and said, “Wait a second. I think I’m autistic too.” And were you already a nurse and you pivoted into the feeding world? Or how did that happen for you?
Laura:
Yes. Well, a bit different. I’ve been in the UK about 10 years. And it was really at that point I needed to change because I was doing a lot of work in person, in a hospital in Los Angeles. And then when I moved here, my licenses don’t really flow over well. There’s work you can do to do that. But I thought, you know what, I’ve always thought I wanted to work in public health and I have a public health license. And that’s always where I’ve spent a huge amount of my community service time. And I just kind of never knew who that group was going to be that I wanted to really focus on. I’ve always been connected to and volunteering in an LGBT center. And so, I thought maybe it’ll be that. And I always wondered, oh, but there seems to be something else I’m really interested in. But again, I just like couldn’t put my finger on.
And so, it became, with my kid, of how we made a lot of life changes to let us live in the way we needed to to be successful. And people just started asking me, like, “Could you meet for coffee and tell us about this?” And I was like, okay. And then I just realized that was taking up so much of my time. I went, I guess I’ll just do it. And actually, I really wanted to avoid talking about food, because I was still processing parts of it for myself. And it was the parts that I never really wanted to talk to people publicly because I really separated from people I went to school with at that time, because I was so ashamed for what I went through during those years that I thought, “I just don’t think I can do this publicly.” But then, I’m this nurse and someone’s house, and there’s questions. And obviously, food comes up. So, I went, “Well, okay. Let’s dive in.”
Meg:
Laura, I’m so glad that you’re talking about food to families, because we need more people doing that. And I got a lot of feedback after the last episode with Naureen on feeding therapy where people said, “I needed to hear that and want to change what I’m doing. But I still don’t know what to do, and it’s hard for me to make that shift.” So, I want to talk a little bit about what that looks like in your personal and professional experience. One of the things you talk about is normalizing autistic behavior around food. What does that mean?
Laura:
That’s kind of like, the biggest thing. One of the foundation pieces of my work is — so, somewhere lower down — is that my work is very family-led, and parent-led if it’s a child, because the work is so much just explaining how we need to listen to our bodies, and take care of ourselves. So, there’s a huge amount of just taking away all the social pressures and reminding. Often, with parents, I think I’ve said it every single time and it’s always true, that they have very, very good instincts. And they often had been following those through like the child being a baby and maybe toddler, but it’s at that toddler age that so much more social pressure gets into what eating should look like, and when it should be, and just everything. Where it should be. And that just does not fit the neurodivergent people and also when we think of like health and disability. So, it’s just not that simple. So, a lot of the work is really introducing them to the autistic community and introducing them to all the different reasons behind eating because eating is not just for nutrition. There’s lots of other reasons like the comfort part, the culture part, the safety part. So, it’s just reminding them about all of that and really supporting them to listen to themselves, and to listen to their kid and following their kids lead.
Meg:
I think one of the biggest pushbacks that we got against the last episode, or not really pushback but people still feeling confused, was the question about nutrition. So, people said, “Yeah, but what about kids who, you know, only have five foods and they’re getting tired of them. And they’re going down to four and we’re worried about nutrition? Shouldn’t we be doing Systematic Desensitization for those kids to make sure they have enough foods to eat?” And what I hear you saying — and you’re shaking your head at me —
Laura:
I’m shaking my head. No.
Meg:
What I hear you saying is we need to actually focus on the culture.
Laura:
Yes.
Meg:
Their experience of safety, their autonomy, taking away the social pressure, building trust, which is very different from traditional feeding therapy. Can you speak to that a little bit?
Laura:
Yes. The number one foundation for my work in any of the topics, including food, is mental health. And we’re talking about Autistics and PDAers. So, in mental health is autonomy. So, every kind of support needs to be from that point of view. So, with that, you can’t do desensitizing around food because there’s a loss of autonomy. So, I understand when people want to come in and they’re concerned about this number. I tend to think of it as this numbers game. And there’s that code of like, ‘How do I get my kid to’, ‘How do I get this child to’, and I would say you need to scratch that. Because that’s pressure, and you’re never gonna get a PDAer to do any of that with this pressure. You need to go back to listening to the person and often, the foods are dropped because of all this pressure put around them.
And there’s these points to bring up around when certain things happen in the disabled community, or the autistic community, it’s thought of as very, very scary. So, for example, the idea around this thought about regressions with food and people will say, “Oh, they’ve dropped a food so they’re regressing.” It really needs to be brought to outside of the disabled community, if you had a friend that was not eating as much, unable to take care of their self-needs — self-care needs, excuse me — we wouldn’t be calling it a regression. You would notice that that person is anxious and maybe burned out. But in the autistic community, then there’s this, “Oh, my gosh, we can’t let them drop more foods,” and they put in more structure, more pressure, and you drop more and more, because you’re forgetting the number one thing is mental health and autonomy.
Meg:
I hear this message that you’re saying that we, unfortunately, lose so quickly that we need to come back to, which is the most important thing is mental health, safety, autonomy.
Laura:
Yes. Yes. And so, if we could sit with that for a minute if that’s okay, because your podcast reaches so many people. I’m very interested in wanting to catch and prevent self-harm in our community. Unfortunately, self-harm is very, very common. Whatever the number that ends up getting reported, I can never remember since I don’t remember numbers. And I also tend to think that it’s higher, because so many adult Autistics are unidentified, and also a lot of people feel some shame around it and so don’t report. So, with mental health being my number one thing I care about, I consider it part of my duty of care, that no matter what you’re coming to talk to me about, what topic it is, that’s going to be part of the assessments, it’s going to be something that we talk about. And so, I just would really like to invite everyone that’s listening that works with Autistics to consider doing similar.
Meg:
Can you say more about what that looks like in practice?
Laura:
Of course. So, with the assessments, I put it in in a way of really trying to make sure that people know that there’s no judgement and that this is just something that happens. So, I’ll put statements like, “Self-harm is a common reason why people reach out for support. I’d like to make sure, you know, if you need help in this way, too.” If I’m sitting and talking with parents, of bringing up, again, that this is no one’s fault. This is just something that happens and is because someone needs help. And now, that’s what you’re doing. You reached out for help. And it also puts us in a place of needing to know all you resources around us as well, like who to signpost these people to, in case they do say, “Actually, yes.” And then, in practice, sometimes someone doesn’t want to say yes, I often get a very blank part on the assessment. And then, when I see them, then maybe they’ll feel comfortable with after they’ve met me and sat with me for a little while to know that I am here to listen, and I’m here for them and might want to bring it up at a later time. So, just trying to make sure that there’s space for that.
Meg:
Laura, I really appreciate you putting that on our radar because this is the type of statistic we can see and care about — self-harm, suicidality. We know that the incidences of these are very high, especially with autistic people who have undergone therapies that ask them to mask and behavioral therapies. And just for all autistic people living in this neurotypical world, there’s a lot of stress and trauma. It’s very easy for us to think, “Oh, that’s somebody else’s job. Somebody else is going to address that.” So, even if there’s an OT, or speech language pathologist, or nutritionist listening where it might be outside of our scope, we can help identify it, right, and then help find resources for a neurodiversity-affirming mental health provider who can support that person.
Laura:
Absolutely.
Meg:
Thank you so much for putting that on our radar. I want to circle back around, since we’re talking so much about autonomy and safety, I want to circle back around to PDA. So, we do have a couple of episodes on the podcast, Episodes 23 and 24, on PDA that folks can go back and listen to. But in case people are unfamiliar, can you reorient us to what a PDA profile is, what that means, and how it relates to food and eating?
Laura:
Yeah. PDA, so the way the community talks about it is that it stands for Persistent Drive for Autonomy. So, the way I think about it is that my need for being in control of myself and my body really comes before anything else. And that’s before any other self-care need. So, when it comes to like food, and when I was in professional offices with them weighing me and telling me, “You have to gain five pounds by the next time I see you,” as a demand, and it might have been something I wanted to do. But now that they’re forcing it on me, I can’t do it. And where that really like rang a bell with me was some years back of a young adult I did some work with and he said, “I just couldn’t give them the satisfaction.” And I thought, that’s it. That was what it was. Just couldn’t do it.
And then, also, for PDAers and food, well, I’m speaking from my experience. So, I think I got on your radar because I put a comment in the Facebook group with Micah. And I thought, I can’t believe I’m putting this out there. But what ended up happening is I had all these demands from the professionals of, “You need to gain X, you need to eat Y.” And then I knew I wanted to, because I didn’t feel very good. I had lost weight to where I had been on these really highly competitive sports teams, and I did not have the energy to compete like I used to. And that was devastating to me. So, I wanted to gain back this weight and feel strong again. But now that felt so overwhelming. And what I used to describe it as was like this fighting. Like, a couple of people in my head fighting. And I now know it was the internal demands. And I think other PDAers will attest that navigating internal demands can be so incredibly difficult. And again, so here’s this self-care need of ‘I need to eat’, but my autonomy actually goes above that, above and beyond that.
So, if I find myself coming back from school and I have this long day. And I would say, “Right, I have practice I have to get off to. I have 45 minutes. I have to eat; I have to eat. Otherwise, I won’t be able though to run. I need to eat; I need to eat.” But the other side of me was like, “No, you’re not going to give in to them. They don’t know you; they don’t know your life.” And I would be fighting myself. So eventually, what ended up happening is, I would try to like, accommodate both of that. And I would kind of approximate eating or having a meal. And it started with popsicles — or ice lollies, if you’re in the UK — because it took a long time to eat. Obviously, it does not have a ton of calories to sustain someone going off to like a three-hour practice. But it was like, here, I’m going to eat this.
And then it slowly, and then it became — I don’t even know if it’s slowly, I don’t remember. But it became that I started eating the popsicle sticks along with it, because then that took longer and it felt like more of a meal. And then I found that I was just starting to pick up things next to me if I was sat down somewhere and sucking on them to be like, “See, I’m eating.” When in reality like I knew that wasn’t food. I knew that’s not what I wanted to be doing. But it was the only time that those voices of the internal demands were quiet. And so, I kept doing it in order to find some sort of peace.
Meg:
That’s really interesting. How can we better support our PDAers who are one, struggling with the external demands of eating, but maybe also struggling with the internal demands?
Laura:
First of all, I think just understanding that that exists is kind of the biggest lightbulb point of, “Oh, okay. It’s not just me. And there’s all these people, so then I can reach out to this community and we can chat about it, and laugh about it at times, and just normalize it.” One of the biggest ones for caregivers and parents is really looking at the day-to-day for the kid and saying, right, where does your child have control? Because most come saying, “My kid is so controlling, you know, and they’re having these really big behaviors or an aggression and they’re facing exclusion, and they’re so controlling.” But in reality, when you bring it back down and really sit with them in their day-to-day, there’s almost no time at that kid controls.
So, it’s really reframing it into right, everyone needs breaks. Autisitics, in particular, need breaks; we need downtime. So, the easiest thing to do is look at scheduling and look at — and this can be really difficult because it happened with me where I enjoyed every part of my schedule. I don’t know what I would have wanted to have given up at the time, or that’s what it would have felt like, but it’s a really important discussion to have, and to have with the kid around understanding it’s not a punishment. It’s really, again, going back to mental health of we need to regroup a bit. And we need to give you time to just come home, play Nintendo, go outside, sit and stare at the wall, I don’t care what you do, and just have free time to where the external demands can reduce. So that way, the anxiety can reduce and that way, the internal demands can reduce, and they can take care of themselves again. Once you can take care of yourself, and that person is feeling able to, then you might want to start putting stuff back in. But that really needs to be really person dependent.
Meg:
That makes a lot of sense, Laura, and you’re really bringing us back, again, to mental health as foundational for eating. I want to ask you about gender expression. How does gender expression relate to food and eating?
Laura:
Well, yeah. So, during all this fun time, like the junior high school time, that’s the age where there’s so much more pressure and demand around the gender roles, because now you’re becoming these young men and women. And so, so much pressure around like, what are you wearing? You know, how are you wearing your hair? What are you listening to? And first of all, I didn’t get it. I was so focused on the activities and I really didn’t understand my peers. And actually, I used to keep notebooks and notes on how to become this teenager. And I found the demands, the external demands, particularly around the expectations around young women to be something that I did not like and did not identify with. And because it was so much around, being quieter, being more passive, and I am neither of those. And around like things you should talk about, but not talk about. But PDAers, in particular, like body parts, body fluids, cursing, I mean… That’s me. So, and the things that I’m interested in, hence being in health care. So, it didn’t make any sense to me, and I didn’t like it. And I didn’t feel like I really identified with this mold of this young woman that I was supposed to become. And at this point, I was already under the professional care about, oh, well, you’re restricting your diet, restricting your diet. And I thought, well, I guess I’ll just play with this more. I wonder if I continue restricting my intake, then I won’t physically develop as much. And therefore, maybe I can gain entry into this like, gender-neutral space, and not have to play this game. And at the time, I didn’t really get what I was doing, because I had no representation, gender wise, besides the binary. But I’ve really come to understand that I feel much more dysfunctional, just this person. And that was a piece to it. I was fighting, looking much more ‘one gender or the other’ and all the pressure that came along with it.
Meg:
So again, the external demands of gender expression. And we know from research and from this wonderful survey by the social media account @AutisticNotWeird that I think tens of thousands of people responded to that over 50% of autistic people identify as queer in some way. So, majority. Majority.
Laura:
Oh, huge amount. One of the last programs I was heading up as a drop in, it was all teens and young adults. A hundred percent were autistic. A hundred percent, consistently, is if someone’s autistic and queer, a hundred percent. So, the idea of my experience, then, being in line with who I am, it just kind of — it just all makes sense now. It all makes sense.
Meg:
Since there is some crossover at times between folks who do have eating disorders, anorexia bulimia, and are also getting feeding therapy for selective eating from OT’s, SLP’s. Is there anything that you wish that we knew in supporting those folks?
Laura:
Yeah, I think two things kind of come to mind right away. The first being more of just like a general reminder that there’s that idea of just because someone’s autistic doesn’t mean that they necessarily need therapy or intervention. And the same is true of selective eaters. Just because someone’s a selective eater, does not necessarily mean that they need intervention around food. You can be a selective eater, and be thriving. If someone is in some care, I’d like to think it’s more because that they, their health has been compromised, and they’re needing more specialist care. There’s something that just really pulls at my mind, keeps me up at night, and it’s the pattern. And I understand that causation and correlation are not the same thing. But I think when there’s patterns, it’s important to look at them and be curious about them.
I’ve had enough people report, self-report as adults, or parents report for their kids of, “Well, it started off with selective eating. But now they’re anorexic.” And when you really dig into the timelines, there’s a point of when they needed to really start taking measurements and weighing them. And it was kind of like my experience as well, where numbers weren’t part of it. So, I think it’s really important that if you’re supporting someone that’s a selective eater of really considering, do I actually need this weight? Do I need them to be weighing themselves? I think there is, sometimes, especially when there’s going to be two feeds. And this is where I, and part of why I wanted to come on the podcast, I want more conversations with dietician to go, “When do you feel like there’s this line for you, because what I do is slightly different, but I want to make sure I’m being really safe for everybody.” But I am very concerned with putting that priority back onto these numbers. And I’ve wondered how much we as professionals have perpetuated eating disorders, or caused them by getting the numbers in there?
Meg:
Is there a way that we can, if we do medically need the weight, is there a way we can do harm reduction around weighing and measuring?
Laura:
Yeah, I think talking to the kid or the adult about, really, why you need that number, versus ‘I just need to know your weight’ and making it about the size. But what is that weight telling you, and you as the professional should know. So, if it’s, “We may need to increase the feeds that you’re having through your tube,” let them know that. I also think I end up telling family, if they are in that realm of keeping track, of let’s really think about what the outcome we’re wanting from these numbers. And I think it’s really important for professionals to let the families know a lot more of the boundaries around it. Meaning — so, this has been brought up on the podcast — if you’re supporting an autistic kid, very likely that the adult, one or both parents are autistic as well. So, there’s that idea in medicine that should be at the forefront of like, do no harm.
So, if you were giving some ideas to a parent around support, it needs to be in a way that’s also safe for the parent. And we know that Autistics can be a little obsessive with things. And we know that some Autistics — not me — but a lot of Autistics really like numbers. So, I’ve seen and been in the home of someone who has been told, “Maybe the only route is going to be taking their weight once a week,” but the parent who is really trying to do their best and wanting to help their kid and wanting to feel in control of something, now they’re weighing multiple times a day. And it’s really out of hand. And I’ve thought, gosh, I don’t think the person that asked for this told them that many times. So, I think it’s just being more clear about what you’re wanting from that parent and really letting them know.
Meg:
That is such helpful advice, Laura. Can it be helpful to offer to the child or adolescent to not share the numbers with them, or to do it in a way that’s quick and casual rather than them seeing them every time?
Laura:
Oh, absolutely. I think that goes into that autonomy piece of asking like, “Do you want to see?” You know, like, we can do this without you knowing or with you knowing, and just having the person involved in their care.
Meg:
I love that. I want to shift a little bit to Ehlers Danlos. You pointed out to me that this is something we haven’t talked about on the podcast before. Can you explain just briefly what it is and how this might relate to feeding for autistic folks?
Laura:
Yes. So as a nurse, I’m super interested in the medical and like physiological reasons why there’s differences in eating. Ehlers Danlos is incredibly common with Autistics and affects me as well. And it affects so much of the body because it’s a connective tissue disorder. And there’s actually 13 distinct ones, with hypermobile being the most common. And it affects all over the body. In particular, with food, it affects everything from causing more muscle fatigue. So, if you think of like all the muscles involved in needing to sit there, feed yourself with your arms, your hands, your jaw, your tongue, increase reflux, lower GI motility, so therefore more abdominal and GI pain that’s intermittent without a pattern, being satiated or feel really full after just a really small amounts of food, constipation, diarrhea. So, it makes sense that if so many of the Autistics have Ehlers Danlos as well, that our eating pattern follows where we are looking for foods that aren’t going to create more discomfort. And it makes sense when you see a person that needs to eat very small amounts of food, but very frequently throughout the day and night.
Meg:
Thank you. I know that’s something we need to really explore more on the podcast as well. But I appreciate you kind of putting that on our radar. There’s really a lot to consider when it comes to feeding. And sometimes we’re just chained in in intervention and approach, and we do it without being able to really get this big picture approach. I want to zoom back out with you for a minute before we wrap up. What are some of the key recommendations that you make to caregivers of autistic people with feeding issues?
Laura:
I think I’ll have to echo what’s been said on the podcast so many times, is support should be from the lens of autistic traits and culture. And that way, it’s valid to the person. And also, about life skills. I’m concerned about the person, not just today in this week, but in the years to come. And what if, what happens when this kid maybe is out on their own? How are they taking care of themselves? So, looking at how to create support in a way that will carry this person forward.
Meg:
That’s so important, Laura, and it brings us back to your answer to the question about like, “Don’t we need to do Systematic Desensitization to get the kid to eat more foods?” And Naureen said something similar. She said, “Sure, you might meet the goal, check it off your therapy checklist. But the long-term impact of that isn’t what you think it is.” And you’re asking us to do the same work, to look long-term.
Laura:
Yeah, I’ve said to people at times when they’re like, “Really?” Well, think about it. When I come home after a long day and I’m tired, do you think I take out a preferred food, and I crunch a non-preferred food on top of it to get myself to increase my variety? At my age, that non-preferred food is not going to be in my house, right? So, that type of intervention does not make any sense for who I am as a person long-term. So therefore, I look at it as my wasting this kid’s time.
Meg:
I appreciate that. And one of my favorite quotes from the podcast was Winnie Dunn who said, “The hours spent in therapy are the hours of a child’s life.” So, when you say wasting their time, I know. I know that matters. That’s their life that’s happening while they’re sitting in that room with us. What are we doing with that? That’s really zoomed out. That feels — it feels so good. Thank you for bringing us back there again, Laura. I want to ask you, if people are walking away with one big takeaway today, is there anything you hope that they’re going to hold on to from this conversation?
Laura:
So, I would say the biggest takeaway would be for professionals to be thinking about where do they get their information. And the best way to support an autistic person is to get your information from other autistic people, people with the lived experience to really help explain the why. Because I think when people understand the why someone needs to eat the way they do, it’s much easier to create those priorities, those goals, and the support for that person.
Meg:
Thank you so much for that reminder, Laura. When I think about my own feeding therapy experience in the past, where I got my information from was non-autistic psychologists, and OT’s, and speech language pathologist. And as soon as I started the podcast, I went, “Uh-oh. Maybe this isn’t the right thing for Autistics.” I mean, it was Episode 2 that that got called into question. And now, I’m talking to you, and Naureen, and a lot of us who are listening, I should say we’re in the right place. We are listening now.
Laura:
Oh, definitely.
Meg:
And we’re hearing something different than what we’ve heard from non-autistic professionals.
Laura
Yes. And myself included in this. I was educated with the medical model for years, and in the big research institutions. So, I’ve had to do a huge amount of unlearning. And I’m rebuilding that professional network at my age. And what I feel like is decades after having done it the first time. And it’s a huge amount of work, but it’s actually really, really exciting and fun.
Meg:
I love that. And that is so relatable, and I’m sure that’s relatable to a lot of our listeners as well. Thank you for sharing your experience and your expertise with us, Laura. Tell me what are you working on now and where can we find you online?
Laura:
I’ve been doing training with sports coaches and other activity providers to feel more able and more confident in supporting their autistic and PDA participants. And then I’ve written a course for other practitioners that I’ve just been teaching locally to help increase the amount of safe people to point other people to. So, it’s around understanding our community and what our needs could be and how to make their practice more inclusive. And then, I also help run some free community courses. I’m kind of everywhere locally, but really hard to find online, which has been a way of having a very flexible way of working with my kids and their needs and through COVID. But those needs have changed. So actually, I’m in a moment of flux and needing a new organizational home. So, I think the best way to catch me at the moment is actually just my email.
Meg:
And I will put your email address in the show notes at learnplaythrive.com/podcast. But do you want to share your email address with listeners in case somebody’s in the UK and trying to find your work?
Laura:
It’d be Laura — L-A-U-R-A — dot — K-O-K-O-P-I-E@gmail.com.
Meg:
Thank you so much, Laura.
Laura:
And thank you so much.
[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.
