Addressing Fat Phobia for Autistic Adults

Segment 1

Transcript

Addressing Fat Phobia for Autistic Adults

October 15^th, 2023

Welcome everyone to Today’s Autistic Moment: A Podcast for Autistic Adults by an Autistic Adult.  My name is Philip King-Lowe. I am the owner, producer, and host; and I am an Autistic Adult. Thank you so much for listening.

Today’s Autistic Moment is a member of The Autistic Podcasters Network.

Today’s Autistic Moment is a free podcast that puts Autistic Adults front and center, where our stories are always the headline. 

This first segment of Today’s Autistic Moment is sponsored by The Autism Society of Minnesota: Minnesota’s First Autism Resource.  For over 50 years The Autism Society of Minnesota has been honored to support Minnesota’s Autism Community. Visit them online at ausm.org.

Thank you for joining me for this episode Addressing Fat Phobia for Autistic Adults. Kelly Lenza is my guest for this show. 

Please visit todaysautisticmoment.com where you can listen to the podcast, get transcripts, program updates, and read the guest bios pages.  Please visit the Future Shows Page to read the titles, guests, and descriptions of all the shows coming up through December.  The transcripts are sponsored by Minnesota Independence College & Community. The transcripts can be read and followed from the website.  There is a link provided to get access to a document form of the transcript that you can print it, so it won’t use up the ink on your printer.  The written document transcript has a font that is accessible for dyslexics.  While visiting the website, please consider supporting the work of Today’s Autistic Moment with a financial donation or purchase an item from the Logo Shop.

Please follow Today’s Autistic Moment on Facebook, Twitter, Instagram, and LinkedIn. Want to chat with me and other listeners? Join Today’s Autistic Moment Community Group on Facebook.  Please subscribe to the YouTube channel @todaysautisticmoment to watch any episode of Autistic Voices Roundtable Discussions.

You are invited to join me and six Autistic individuals on the YouTube Channel @todaysautisticmoment on Wednesday, October 19^th at 2:00pm central standard time for Autistic Voices Roundtable Discussions: Your Behavior Is Not Appropriate.  Every Autistic has heard those words too many times to count on our fingers and toes.  Most likely there are Autistics out there who just heard a manager at their workplace tell them that their behavior is not appropriate. Autistics have heard those words from parents or while dating someone. Autistics hear the words your behavior is not appropriate when we have tried to ask someone for help or spoken up at an event where they ask for the input of everyone there.  The Autistic gives their input through our unique way of communicating, and we get told our behavior along with what we said was not appropriate.  Please join us for this incredible conversation.

One final note before we dig into our topic of discussion.  Give to the Max Day is on November 16^th. Give to the Max Day is an opportunity to donate to Minnesota’s many nonprofit organizations.  Today’s Autistic Moment is being sponsored this year by four outstanding Minnesota nonprofit organizations that offer support services to Minnesota’s Autism Community.  The Autism Society of Minnesota. Minnesota Independence College & Community. Looking Forward Life Coaching. The Autism Mentorship Program. You will hear some ads during October and early November asking you to donate to those organizations on Give to the Max Day. When you donate to those organizations through Give to the Max Day, you help them in their work and join me in thanking them for their support of Today’s Autistic Moment.

One aspect of being Autistic that has many pieces to it is food. Autistics can have sensory issues with food textures and digesting certain foods.  Some Autistics are strict vegetarians because they cannot handle the textures of meat in their mouths, or they cannot digest meat.  Other Autistics do not eat many fruits or vegetables because the textures are not predictable depending on how ripe they are. Another sensory matter for many Autistics is interoception. Interoception is how the body communicates messages to the brain such as “I am hungry.” “I am thirsty.” “I am full, stop eating.” “I haven’t eaten in a while, please feed me.” When the brain does not receive that information, it can be difficult for the Autistic to translate the information into a decision to eat, drink, etc. Many Autistics including I, have certain foods we eat when we are experiencing sensory overload or executive functioning issues with preparing a meal. These issues with food and eating can result in various eating disorders.  This can be one of many reasons why a lot of Autistics have larger bodies.

Speaking only for myself here, my family has always been on the fat side.  My mother and my father were overweight. I have been fat since the first grade.  My father was one of eleven children.  Ten of my father’s siblings had diabetes.  I myself am a diabetic. I have lived through a life time of being harassed by my classmates for being fat. I had gym teachers who told me to do a few more jumping jacks to lose the weight. I have been through doctor’s appointments where I have been told to exercise and lose weight.  Many doctors have suggested diets, bariatric surgeries and sent me to nutritionists who put a lot of fear in me as to what could happen if I don’t lose weight.  I can honestly tell you that I am still fat, and my diet makes me happy.  I have controlled my diabetes well with medications and insulin, and my A1C’s are at 6.1, which means good control.

Kelly Lenza is my guest to talk about Addressing Fat Phobia for Autistic Adults.  Kelly is an Autistic who is an amazing self-advocate. Kelly advocates for Autistics who live in larger bodies.  Kelly is nonbinary and a mother. 

After this first commercial break Kelly will join me to talk about Addressing Fat Phobia for Autistic Adults.

Commercial Break I

Podcast Apps

Today’s Autistic Moment can be downloaded and heard on most podcast apps including Apple. Google Play. Breaker. Castbox. Overcast. iHeartRadio. Pocket Casts. RadioPublic. Spotify. TuneIn. Pandora. Amazon Music. Audible. Podcast Addict. Podcast Chaser. If you are looking for the transcripts, go to todaysautisticmoment.com, click on the episode you want to listen to and follow the directions to find the transcripts. 

Thank you for listening to Today’s Autistic Moment.

Segment 2

Philip King-Lowe 

Kelly Lenza, welcome to Today's Autistic Moment. It was due to a cancellation by a previous guest that I've been able to ask you to come on. Thank you for answering my request to come on at short notice. Welcome. I'm glad you're here.

Kelly Lenza

Thank you for having me. I appreciate it.

Philip King-Lowe 

You're welcome. You're welcome. So, Kelly, we're going to talk about a very important topic that does not get discussed all too often. And that is Addressing Fat Phobia for Autistic Adults. Um, you know, a lot of us Autistics are......

Kelly Lenza 

They are in larger bodies.

Philip King-Lowe 

Yes, thank you larger bodies, and we get lots of advice from doctors and psychologists, sociologists and more about what we should be rather than what we are. And I think it's a great idea to talk about this subject. We know that fat phobia is an issue with all of society. But with Autistics, of course, there are these presumptions as to what we should or shouldn't be. And so, we often think that these are things that don't need to be talked about, but I'm glad you're here because I do. So, I want to begin with my first question. When we're addressing fat phobia for Autistic Adults. What important information do you feel Autistic Adults and our caregivers need to know about?

Kelly Lenza 

Um, let me look at my notes here. Okay, so some of the main things that I was thinking about, that could affect Autistic Adults that are living in larger bodies is that there's three main things. I think that masking in situations with doctors and other care providers, the combo of masking and trying to have really difficult conversations about health, especially when you're not being listened to, like, that's really hard. It's hard for everyone, but it's going to have an additional component of being difficult for Autistic Adults. Another issue that I was thinking is interoception, and spatial awareness. You know, interoception, you know, being able to feel your sensations in your body. A lot of times lot people in larger bodies are described as clumsy or they're, you know, like you were saying, like, treated as if we don't know our own bodies. And like, you know, there is a very real, not that we don't know our bodies, but that we have those some of us struggle with those limitations of interoception and spatial awareness. So that's going to impact sensory profiles with clothing and moving through spaces and a larger body. That's going to affect disordered eating issues, potentially, or just eating in general. And it's going to be like, because of those issues with interoception and spatial awareness, it's going to be making it harder for some Autistics to engage with disordered eating and recovery. And I bring up disordered eating specifically because like, so many of us living in larger bodies have some kind of disordered eating behaviors that we've developed as a result of diet culture and anti-fat stigma. And then the third thing, which I kind of already touched on, but sensory difficulties with clothing. It's something that I really run into a lot at a larger size. There's a much smaller pool of available clothing, and other self-care products. And so like, even stuff like, like accessories, but like, I'm thinking of like necklaces, and you know, like fashion accessories, but there are also issues with like, medical aids that may not be built for people in larger bodies. So, um, yeah, like there's, there's these major things that I can think of that impact me as an Autistic person in a larger body. But obviously, like, I think one of the biggest ones is just accessing care. You know?

Philip King-Lowe 

Yeah. It definitely impacts our social interactions. I have been out shopping, I have been out to a restaurant to eat, and someone has pointed, look at that big man, that sort of thing, because I too, am a large, large person. And, you know, many of us myself, I am a diabetic as well. And I have been put through the challenges of managing my diabetes based on things I should eat things that I shouldn't. And to be fair, my, my food textures, and also the things I can and cannot digest, are things that a strict diabetic diet just does not work. So, I have had to find some things that work for me. And I've also had to, you know, look for aids that assist me in the way I do. You were just talking about clothing, I happen to be somebody that I can no longer wear a coat with a shirt, say with a closed collar. That collar around my neck just feels like little pins in my neck, you know? So yes, I agree. And, and then there's the financial impact. You know, buying clothing for bigger persons, people is always more expensive than people in other sizes. So, I think you've got some points. So, feel free to expound on some of that, or continue with that, and, and or whatever you have to say.

Kelly Lenza 

Sure. Um, well, I was thinking too, that it might be helpful to sort of talk about the basics of like, what's fat phobia, and like some of the alternative words and phrases that you might hear in regard to it, so go ahead. That's yeah. So, like, fat phobia. You know, like, I think fat phobia is probably a really relatively well-known word at this point. But it does mean like the fear of being fat. And a lot of people do have a real fear of being fat, even some fat people. People in larger bodies, and that there are other terms that are used to describe it too. So fat phobia might also be described as fatmisia. Which fatmisia is like another compound word, that means hatred of fat. And so, some activists like to use the word fatmisa, because they feel it more accurately represents how society is treating larger bodies. But you also hear, like I've sometimes talk about body liberation, which is a more all-encompassing idea around bodily autonomy and sort of being liberated, being freed from these expectations that other people might have about your body. You might also hear about sizeism. Sizeism, you know, that's sort of like the word that you might hear in regard to fatphobia when people are talking about different kinds of oppression. And then I also wanted to touch really briefly on body positivity, which I think a lot of people have heard of, and body positivity. It tends to focus more on like an individual loving themselves rather than like structural and systemic problems that are faced by people in larger bodies. But also just, I also wanted to touch on just the word fat, like a lot of people still have really, they don't like that word. They don't want to use it for themselves. They don't want to use it for other people, because it's been associated as a negative thing. I tend to use the word fat because I want to sort of reclaim that adjective as like, morally neutral, value neutral, it's something it's the same way that we talk about being lanky, or having blond hair, or, you know, having light skin or dark skin. To me, using the word fat is good for that. But not everybody is there. And I typically try when I'm talking about other people, I will usually say like, if I have to comment for some reason on somebody else's body, which like I try to avoid, altogether, but if I'm talking about somebody else, I might say, This person is living in a larger body or a bigger bodied person. Because I do think it's important that we not put our own feelings about bodies and body sizes on to other people, regardless of, you know, how we feel about it. Like, I like the word fat, but like, a lot of people are not going to, but if I use the word fat, talking about all of this stuff, like that's where I'm coming from and using it.

Philip King-Lowe 

Yeah. Yeah, a lot of that is, is, is driven by a media and an atmosphere, that puts the biggest negativity on people who are overweight. You know, and some of the reactions that I've gotten, and I'm sure you've gotten them to, where somebody looks at you, they shake their heads, they have this green look on their face, like how come they cannot be, you know, it's too bad that they're like that, those kinds of things. We get those remarks with being Autistic. Oh, it's such a shame, they're Autistic and all that sort of thing. There's, there's all this all this reaction to this to people seeing us? And yes, you know, I will tell you that I have seen a shift a major shift. In my medical doctor over the past 10 years. I've met, what I've seen is that, rather than getting the usual, you know, please, you know, try to lose some weight, and exercise and what never, you know, that they've begun to understand that there is a biological factor. Yes. With being obese. Again, that's another word some like to use, some don't. Yes. You know, and the thing is, is that it is related to things that are not necessarily choices. Yes. You know, and so, that's just, that is a trend that I have seen just within the last 10 years. For me.

Kelly Lenza 

Yes, I really agree. There is a growing body of knowledge for the public at large, and for care professionals who they're starting to realize that. They're starting to recognize. I mean, I think more and more people are realizing we really don't have that much weight science on how somebody can lose weight. We really don't know how to make a fat person thin, at least not over the long term. You know, there are dieting has been studied really, really extensively because people really want that to work. But the reality is, is that for most people, it's something like 95% or higher of people are not going to be able to lose a large amount of weight and they keep it off over a long term, like two plus years. And so, it's like, it's just really tough, because the, the push is still there. For some people, every time they go to the doctor, you know, they're hearing the same message. And we really don't have the information to support that recommendation.

Philip King-Lowe 

Yeah, um, I want us to also talk about what we were talking about before we started our interview today. You know, we also, you know, there's countless ads about certain kinds of exercises, you can do. Certain kinds of dieting you can-do so-called miracle drugs or whatever that's supposed to fix it. Then there's also the matter of the bariatric surgery. Many doctors are recommending that to people who are obese, people who are diabetic, claiming that once this is done, you know, I had one that says the diabetes will be gone and I have I know of one individual whom that it's absolutely not true. You know, so the point is, is that I will say that my doctor made that recommendation for me. And it was after I was identified as Autistic. And I took that information, and I went to my psychotherapist, and to my psychiatrist who are well trained, and what Autism looks like, and what it is. And they understand both the pathological but also the social side of neurodivergence. So, I took that information, and I talked with them about the questions of, you know, I know what this would mean, for me in terms of a huge change of routine, a huge change in what I can and can't eat, that I may eat to help with my sensory processing, or to help with stress, or to just because it will change my understanding of food. And I don't know if I don't know if that's a healthy thing for me to do. And there is the matter that if, after a surgery like that, that if someone you know, makes the decision to go back to the diet they had before it can cause serious, serious, yes, meant, I mean health problems, both psychologically and physically. So, I made the decision, no, bariatric surgery is not going to work for me. And I'd like to know what your experience is. And maybe you have some thoughts about other Autistics with those experiences. Go ahead.

Kelly Lenza

Sure. Like I was telling you, I also had have had bariatric surgery, recommended to me many times. And back, oh, it was probably 10 years ago now. But I really looked into it and was thinking about getting it. And basically, like, I have a history of disordered eating. It's something that I've really struggled with, since I was a teenager. And I know that restriction is something that really triggers me and really triggers a lot of my mental health issues. So, it's something that I felt would not be sustainable. And for some of the similar reasons like that you listed, you know, you know, there are things that they just they change forever, they change your body, you know, permanently. And I don't think that I would be able to live with those changes. And I do know, some people who have had bariatric surgery, and they've had okay results. But I've also known several people with bariatric surgery, who they gain all the weight back. I've known a couple of people who are also diabetics, and their diabetes went away for like, a couple of years, but then it kind of came back. So, it's, it's really tough, because it's, it's a solution that has been suggested, time and time again, to so many people and but like, it really does have lifelong consequences. And especially for Autistic people who are dealing with all of it, like I don't blame anybody who decides to get it. Because it you really can feel I have felt in the past. Really desperate to change my body in some way. So that I don't have to struggle as much. But I would say that that goes for that goes for a lot of things. Like for me with being Autistic, is like there are things that I wish that I could change, because I don't want to suffer as much. But you know, ultimately, we live we live in a society and the society is what's making it hard for us. It's not it's not us. It's not us that need to change, you know, and I feel that way about being Autistic and being fat.

Philip King-Lowe 

Yeah, yeah. Doctor, I'm sorry. David Gray-Hammond, who's been on my show a few times has said that we don't suffer from Autism we, we nor do we really suffer because we're fat. We suffer because of social constructs. Yes. Around Autism and being fat. So, it's not the conditions themselves as much as it is a society that has determined what is, quote, normal, or normative versus what is not normative. And that's why we have the social stigmas that we do.

Kelly Lenza

Yes, yeah. 100%. And, like, even just touching back on clothing, clothing options, you know, I've had some people kind of scoff at this, like, maybe this isn't that big of a deal. But for me, it feels huge. Like most people have straight size or smaller bodied people, they're able to buy clothes, almost anywhere. They can go into a store; they can find something that fits them. They can order stuff online if they want, but like, they have lots of options. There are an endless amount of shops and boutiques and bespoke fashion things that people can access. But, like, for me, I have seven stores. Yeah. I can count them on my two hands, you know, I have seven stores that I have options from. And not all of those options work for me because of price point for one, you know, talking about wage, wage differences and access that way. But also, from a sensory perspective. Like, I can't do shirts with collars. I can't do synthetic fabrics. Like I basically go on, like my one trustee website, and I typed in 100% cotton and like, that's what I get to pick from. Yeah, you know, if they have my size in stock, so I'm, like, that's a really big one for me, because like, you know, don't have clothes, like, you can't go out and exist in the world. But it also clothes impacts the way that people treat you and look at you. And especially if like just thinking about the way that people have treated me because I'm different. And because I present differently. Like I don't like what am I trying to say? Um, I don't get the option of being small. I don't get the option of being, you know, invisible. Like, I'm very visible everywhere I go.

After this next commercial break, Kelly will talk about some ideas of how Autistics in larger bodies can advocate with medical professionals including if necessary, leaving a doctor’s appointment. 

Commercial Break II

Logo Ad

I know you are loving Today’s Autistic Moment.  My guests are outstanding.  The topics we discuss are relevant to what is happening in the lives of Autistic Adults and our caregivers.  The podcast is being referenced to during conversations about Autistic Adults.  The best is yet to come. 

Go to the Logo Shop on todaysautisticmoment.com and buy yourself a 16oz drinking cup and/or a lapel pin with the logo of Today’s Autistic Moment beautifully crafted on them.  Enjoy your favorite beverage all day long.  Wear the lapel pin on your shirt, blouse, jacket, pocket, suit coat or put it on your purse or duffle bag and start a conversation about your favorite Autistic podcast.  Customers who purchase a 16oz drinking cup and/or a lapel pin will receive one purple colored stylus ballpoint pen with black ink and Today’s Autistic Moment’s name crafted on the pen for free.  Get them now while supplies last.

Thank you for listening to Today’s Autistic Moment.

Segment 3

Philip King-Lowe 

I know you are non-binary. Yes. But there's also the gender discrimination that goes into what a man should wear versus what a woman should wear. Absolutely. I would imagine. And please tell me if I'm mistaken, that as a non-binary person, you have some choices to make. But none of them really fits. What you're what you're thinking of what you wear means.

Kelly Lenza

I'm so glad you brought this up because I was thinking about bringing this up specifically, but I wasn't sure if it was within the scope of the pod. But yeah, it totally impacts gender presentation. Because I basically, can I, I've told people before that I have, like, sensory issues, gender presentation and price point. And it's like, I can pick two of those things. But I can't pick all three. Right. Yeah. So um, I definitely like my gender presentation. It reflects more of my sensory needs than it reflects my actual gender presentation, like how I would like to be perceived by the world. Because the stuff that I would like just is not available to me either in a way that matches my price point, or it matches my sensory needs.

Philip King-Lowe 

Yep. Yeah. And yeah. Well, I would like just to move into my final question that I asked, we've kind of covered both the first and the second here. But this is where I like to talk about what steps should Autistic Adults in our supporters take to advocate for the needs of, of, of fat Autistic Adults? And I want to invite you to talk about something that our friend Dr. Devin Price said a couple episodes ago, when he mentioned that you believe in, it's okay to leave the appointment. Yes. So, could you please talk a little bit about that?

Kelly Lenza

Sure. So, I wrote this essay, you know, it's called You Can Leave the Appointment. And it's about preparing to go to the doctor. and protecting yourself basically, as you interact with care providers. So, the first part is just getting referrals is what I would recommend to everybody. If you can. You can get referrals for a doctor that might be safer. For a larger body person, you can ask a trusted provider, like if you have one, like I have an endocrinologist who is phenomenal. And she has always been really respectful of my needs as a larger bodied person. And I have been able to ask her for referrals for other physicians, occasionally that she knows would be more friendly to a patient like me. So, like, you can ask for that. You can also ask other larger bodied people. A lot of groups for fat positivity or fat social groups, they will share referrals for doctors that are more friendly to people like us. And I also recommend really recommend making a care plan, like a self-care plan for what to do if your appointment goes well, but also what to do to help yourself recover if it goes poorly. I also like to suggest making a sort of like medical, I call it a medical passport. I don't know if that's a good phrase. But basically, like all of that information that doctor's offices like to ask for, sometimes they get really overwhelmed with like all the questions like confirm all of your medications due to you know, what are all of your conditions that you've been diagnosed with, you know, data. And so, writing all of those down ahead of time is something that I like to do that helps me interact with like those first couple of like the front desk, people and the nurse that's doing your intake, usually. I can have my like list of stuff, and I can hand it over to them and say, Here you go, like this has all of my updated information on it. But it also, you know, when you have that list, occasionally I've been able to also include a short sort of like cover letter that it will have my needs listed. Like, Please don't ask, please don't weigh me, please don't talk about weight loss to me. And that has worked sometimes people are sometimes care providers are responsive to that. And sometimes they're not. But it's something that has really helped me in terms of accessing health care. Over time, it's something that I've done to really lessen sort of like that social demand, especially in the early parts of a doctor's appointment.

Philip King-Lowe 

Yeah.

Kelly Lenza 

And then another thing that I talk about is just unfortunately, like some of the lies that medical providers might use to try and get you to comply. So that's stuff like, well, we're required to get a weight from you, otherwise, the insurance won't bill the appointment. Well, insurance accepts decline for any of those major, like stats that they take. So, stuff like such as weight, but like, you know, they always take your blood pressure. If they check your height, you know, like you can decline all of those things. And the insurance will still go through. So, there's stuff like that. They might say, "Oh, well, this machine doesn't work unless we put a weight in." That's someplace where I feel more uncertain. Like I'm not sure how accurate that is. It might be true, but it's possible also that there are some dangers in receiving medical care that with equipment that's not made for people and bigger bodies. Right. So, you know, I've been on exam tables that like when I stand up and there's like that little step at the bottom that like kind of comes out like a drawer, you stand on that and like the whole table will start to tip like it's not made for somebody my size, which is really scary. And potentially embarrassing, you know? Yeah. But there's other stuff like blood pressure cuffs. So, you know, if you have larger arms, you need a larger size blood pressure cuff, otherwise, it's going to be marked as being extra high. Chairs without arms is a big deal for me, like, I don't fit in a lot of chairs that have arms. And I've had some, like really good experiences and really bad experiences, like with requesting a chair that has no arms. And then the last one, which I'm thinking about, especially because I just got my new flu shot and stuff yesterday, needle length. So, when you get a needle length, or when you get a vaccination, the standard is one inch needle to go into your muscles. But if you're a bigger body person, you might have extra padding on your arms. And so, it's recommended by the CDC for vaccinations that are intramuscular, you get a one-and-a-half-inch needle to go deeper into your muscle. And sometimes, sometimes you request all of these things, and providers will just like refuse to do it. Yeah. Which sucks.

Philip King-Lowe 

I agree with what you're saying. And I will say that I've never refused to get weighed, I sometimes will say, you know, what would you do? If I say, you know, and I had said, well, the doctors are gonna ask for it. And I'm like, Okay, well, you know, that sort of thing. But, you know, um, you know, I have had those moments when a primary care provider, has gotten insistent upon what my medical care should be, what my medication should be, and how something should proceed. And I have let them know that. No, you are not the captain here. You are the co-pilot. I am the pilot. Okay, yes, you are not going to dictate everything to me, I do have the right to make some choices here. So, you know, that's all I would say. But please continue with what you're saying. And then let's talk about, as I say, about leaving the appointment and how you've done that, and maybe a little bit about how that's been, what kinds of responses you've gotten for things like that. So go ahead.

Kelly Lenza 

Well, I really, I liked that you brought that up. Talk, you know, asking questions is really good. But also, like, a lot of times care providers are kind of hot, they respond to it with hostility. Which is really unfortunate. Yeah, it puts everybody in a crap position.

Philip King-Lowe 

Yes, it does.

Kelly Lenza 

And I, before I move on to talking about leaving the appointment, I do want to say like compliance is something that's still a form of self-advocacy. So, like, and you know, self-advocacy is not like, it's not something you can level up in everything that you're doing when you're talking to your medical provider, and like just doing what you need to do to get through it and access the care that you need. Like, that's still self-advocacy. So even if you are like, Okay, I'm gonna get on the scale. You know, they say they need it, okay, whatever, I'm just going to do it. So, I can move on to the next part of the appointment. Like, that's still self-advocacy. And so like, and it's fine. If you get on the scale at one appointment, and then the next appointment, you don't, you know, and then you go back to getting on the scale, like, it's okay. Especially because, as Autistic people, like, you know, we've got so much extra stuff that we have to kind of carry in our basket. So, it's like if you want to set something aside, you know, like, that's still self-advocacy. It's all good. I agree. Good. And, um, as far as leaving the appointment, you are allowed to leave, you know, like you said, We're the captain or the pilot, however, we want the metaphor to go. But we are in charge, like, ultimately, even though doctors hold all of this authority over us. We are still ultimately the people who can consent or not consent to something. Obviously, that's going to be man. It's going to be different if you’re if you're a person who's working under like a conservatorship or like issue with guardianship. For those of us who are not in that, like, we get the option to say no. Unfortunately, I do not know about conservatorships as much as maybe I should. So, I can't speak to that experience. But you know, you can walk out, like, if you have a terrible experience, just with like the first nurse that's tried to do your intake, you are allowed to leave. And if you, you know, want to refuse your blood pressure, or you want to refuse your, you know, the weigh ins, you can do that, and you can leave. And, of course, there are potentially consequences with that, like, they might charge you for the visit anyway, if they might bill it to your insurance, you know, if you're not expecting it, that can be rough. But also, you can just not get the care that you're trying to get, which ultimately is the worst part. As far as like examples, like I've kind of done, I have left so many appointments in a variety of emotional states. I was, I was I told you earlier, I was listening to the Emotional Avalanche episode, and I just even hearing the first half of it, I was like, oh, man, I recognize this. And just that feeling of working so hard to get into a doctor's appointment, and working so hard to stay regulated, that I can actually participate in my own health care. And then it's like, just that one extra domino, or that one extra grain of sand falling into your pile. And just like, ooh, that you had said something about, like, feeling like glass breaking out from underneath you. Yeah, I really, that really resonated with me. There was one doctor's appointment in particular that it was just like that. It's like everything was going wrong. No, but like, people were pushing back at every step of the way. But I didn't feel like I could say anything or do anything different. And ultimately, what I ended up doing was having a meltdown. Yeah, and I had this meltdown. For I don't I don't know how long but it was like, maybe it felt like forever, but probably like 10 15 minutes, where I was incapacitated in this doctor's office. And then I ended up, I managed to, like, run out sobbing and get to my car. And then I collapsed again in the parking lot. And then even when I was like, collapsed in the parking lot sobbing, there was like, a nurse who was going in for her shift or something. And she was like, Oh, my God, are you okay? And I said, like, they won't treat me because I'm fat. And she just was like, and she left. Like, you know, she didn't want to touch it. And so, um, situations like that, like, Oh, boy. It's rough.

Philip King-Lowe 

Yeah. It really is. And it really is, I agree with you. I can't say that I've ever been in a place where I've wanted to leave an appointment, I've been placed in a kind of who, where I've had my meltdowns because I've been explaining something that I feel is important to my health. And they have basically said, No, we can't do that. And, and or no, we're not going to do that. So, I can't say I left but I have melted down and sometimes after a meltdown. One thing that I have found helpful is to see if there is some way to meet someone halfway without totally sacrificing who you are. Sometimes, like I've gone back to a doctor that I had a meltdown with, and I said, Look, this is why this particular matter was troublesome. Is it possible that we can agree to do this so that I am meeting you and you were meeting me? And the answer was yes.

Kelly Lenza 

That's amazing activism and self-advocacy.

Philip King-Lowe 

Yeah, sometimes. You know, when we're having meltdowns or even overloads, we're not exactly rational. Okay, so sometimes we do need to step back from and take some time to think about what's was said, to think about what we may have said, to think about what, you know everything because when you're irrational and you're in that meltdown, you can't think you can’t. Yeah, and there are those of us, Autistics, we just can't speak at a moment like that. And if we do try to speak, we're not making sense to ourselves or anybody else. So, it's necessary to withdraw from the situation, do some thinking, and try to maybe consider going back to it if you can, and simply, you know, try to meet someone halfway in a way that everyone's gonna get a little bit of what they want. But we yeah, we are giving away something we want too. You know and so sometimes, sometimes that works. And sometimes that doesn't. I also would like to say that nowadays, we have doctors and health care, healthcare organizations that are sending out, "how was your experience?" And I say, this is one of the best places where, especially Autistics that are honest to a fault, get to exercise that strength. You know, and when you get that, right, how you feel, that doesn't necessarily mean what you're going to say is going to be understood and accepted. But yes, you should say, this was not a good experience. And this was why.

Kelly Lenza

Yeah, totally agree.

Philip King-Lowe 

Yeah, you need to you need to let them know, no, this was not okay for me. This was actually very devastating. And here's why. You know, the other thing that I want to say some healthcare agencies now have. There's a lot of us out there now, like, my health care, organization, does my chart where you can go onto your chart, see what's there, but read your messages and things. They also have a have a space called Patient Wisdom. Which is when a when a patient gets to type in some things, they would like their doctors to know. Okay, that's cool. Yeah. And so, if you have that opportunity, go in there and let them know, these are the things that are important to me. You know, I have actually submitted a document that says, These are the 20 things that matter to me about being in a doctor's appointment. These are things I would like you to know and would like you to be aware of. Because what happens is when I go to a doctor in that, you know, whether it's my PCP, or another doctor, or a physical therapist, or whoever that is, they can see that right in the records that they pull up. So, they're already seeing it. And no, so I say, and let's say you don't have that option, I would suggest writing these things up. And when you enter the office to do your, your risk, meet receptionist and or the intake, you say, “Please scan this into my record.” Yeah. You know, that's, that's a recommendation that I make. That's that. That's a good way to advocate for yourself.

Kelly Lenza

Yeah, totally. That's a great. Yeah, absolutely.

Philip King-Lowe 

Yeah. But you know, I mean, because it's really too bad that a lot of doctors do not understand what Autism is like. You know, I have been dealing with pain management for a while, and I also am an Autistic who has some mind to motor issues. And I said this last February, I'm going to say it again. It is to me, it is unbelievable. That it is impossible to find a neurologist who understands how Autistics experience pain or body movement. To me, that is just insane. That that is the way it is. Because the way I look at it, a neurologist is trained in the medical science of the brain. Yeah. Autism being Autistic is has something to do with the brain. Why it is it's just laughable. I have to otherwise. Otherwise, I'll get too angry with it. But it's laughable to me that the doctor that is supposed to be trained in the neuroscience of the brain does not understand that being Autistic is going to have a tremendous amount of effect on your body, how your body responds, how your body acts, how it moves, or how it doesn't move. Absolutely. You know, I went to one neurologist and tried to explain that, and they say, oh, no, it's not Autism. It's depression. I'm like, no, no, no, you know, I just like, No, no, no, you're completely wrong. You know, so, um, yeah, it's, it's just, you know, we talk about trying to get away from medical pathology, but every now and then medical pathology is unavoidable. So yeah, the way I like to think of things if you can't have a serious conversation with them, that makes sense. Sometimes you just gotta turn it into the most comical thing you've ever seen or done, because the only way you keep from being too, too, too, too depressed.

Kelly Lenza 

No, I get that.

After this final commercial break Today’s Autistic Community Bulletin Board will immediately follow the conclusion of our time with Kelly Lenza.

Commercial Break III

Future Shows

Join my guest Ashlyn Baker on November 5^th, for an exciting show entitled Overlapping Triggers and Soothers in Autistic Relationships. Each Autistic individual has their own sensory profile. When different Autistics are in the same space, their sensory triggers and soothers will overlap.  This scenario is very common for Autistic parents with Autistic children, or Autistics as spouses, roommates, or coworkers.  It is also possible to be multi-neurodivergent such as being Autistic and ADHD and the triggers and soothers for both will also overlap.  What are some strategies we might need to work through our overlapping triggers and soothers?  Ashlyn Baker is a mental health professional and owner of the podcast, I Married Your Therapist.  Ashlyn’s expertise is talking about Autistic relationships.  Join us for this great show.

On November 19^th, Sarah Dwan will be joining me for the episode Neuro-Affirming Therapy Options for Autistics.  Finding therapy options that affirm Autistic strengths can be very challenging.  Neuro-Affirming therapies can help Autistic Adults use their strengths to address trauma due to stigma, ableism, and abuse recovery.  Sarah Dwan is an Autistic Disability Advocate from County Waterford, Ireland who supports neuro inclusion through amplifying neurodivergent voices. 

On December 3^rd, Mitchell Schaps from MNeurodivergents will talk about Planning Neuro-Affirming Holiday Social Events.

Finishing season 3 on December 17^th, Tas Kronby will return to Today’s Autistic Moment to talk about Autistic Professionals Supporting the Autistic Community.

Plans for Season 4 are underway. In 2024 you can look forward to shows about Employment, Emergency Preparedness, The Discrepancies in Healthcare and Education for Black Autistic Adults, Autistic Culture and Language, and so much more.

Check out the Future Shows page on todaysautisticmoment.com for all shows up coming through December.

Do you have any topic ideas for future episodes of Today’s Autistic Moment?  Go to the Contact Us page on todaysautisticmoment.com and submit your topic suggestions.  Go to the page for Be My Guest to submit a Guest Intake Form if you would like to be a guest.

Thank you for listening to Today’s Autistic Moment.

Segment 3

Philip King-Lowe 

Before we conclude this interview, and I'm so glad you've been here. Thank you. I'd like your welcome. I'd like you to talk about any, you'd apparently, you've done a share of writings. Have you done any book writing? Do we have any websites to recommend or anything like that?

Kelly Lenza

Um, I I'm kind of a jack of all creative trades. I do a lot of a lot of different things. So, like, I have some essays and creative writing on medium under Kelly Lanza. I do photography in the Chicagoland area. Portrait Photography. My website is currently down, but I do have my photography app on Instagram, which is @_photopotamus_. So, photo potamus is p h o t o p o t a m u s. Rolls off the tongue, doesn't it? Yes. Yeah, but. And I also do like, I do watercolor. I do other stuff. Yeah, I've kind of my main job is being a mom. So, most of the time, I'm, I'm working with my kids and doing household stuff, but I do occasionally dabble in writing and stuff. Yeah. So unfortunately, I don't have like a lot to promote. It's alright. Yeah. But yeah, I'm thankful for the time that you've given me. And it's okay. Just my one last thing that I want to tell other Autistics. You know, if you if you are a person in a bigger body, like, it's probably not your fault. You know, it's, it was a really powerful moment when my endocrinologist actually sat me down. She said, Look, diabetes is not your fault. And being fat is not your fault. This stuff is not your fault. Yeah. There's so many factors that go into it. And we really don't have a good handle on it. So yeah. Yeah.

Philip King-Lowe 

Yeah. But it is important to know that. That no, it's not our fault. And it doesn't. It doesn't mean that we are less valuable to the human race. Unfortunately, that's how it's interpreted. But yeah, it doesn't mean we're less valuable to the human race, or that we don't have, you know, valuables to contribute to the society we're in. Yes. What, what we are talking about, though, is that there is a need for people to understand how fat phobia and that's, you know, being in larger bodies, and being Autistic is a real factor of life. And, you know, you and I are a part of many different communities that have their issues with so many people in larger bodies. We've had to find a lot of our own communities of people like us to be able to feel like we belong somewhere. I've had to do that. And then, you know, we do endure a lot of social stigma. And it is necessary to spend some time in unlearning what you've learned about all that is what I believe I hear you're saying. So does Yeah. So, Kelly, thank you so much for coming on today with this excellent topic, and your wisdom, and this is tremendous. And I thank you for really putting this together at last minute because I know how difficult that can be sometimes. So, thank you so much for being here and we wish you well.

Kelly Lenza 

Thank you, Philip, right back atcha

Transcribed by https://otter.ai

Today’s Autistic Community Bulletin Board

All of these events with their links can be found at todaysautisticmoment.com/bulletinboard

Join The Autism Society of Minnesota for their Adult Coffee Club.  The next Coffee Clubs will be on Tuesday nights from 5pm to 7pm at Dogwood Coffee in St. Paul on October 24^th, and November 21st.  Coffee Club meetings will be at the Milkweed Café in Minneapolis on October 16^th, and November 13^th from 5pm to 7pm. Please RSVP at ausm.org.

Understanding Autism virtual classes will be offered by The Autism Society of Minnesota. These classes are perfect for Autistic individuals, caregivers, those who want to understand the basics of Autism and support Autistic people. Classes will be on October 23^rd, 6-8pm and December 18^th, 10am-12pm.  Classes are free of charge, but you must register to attend.

On Tuesday, November 14^th, join The Autism Society of Minnesota at 7pm for the in person skillshop Speed Friending with MNeurodivergent.  Speed friending is based on the concept of speed dating where you will get a chance to meet a lot of people in a structured way. Visit ausm.org for more information including the physical address for AuSM’s office.

On December 7^th, beginning at 9am to 12pm, The Autism Society of Minnesota will host a virtual workshop about Gestalt Language Processing (GLP). Marge Blanc the presenter will help you outline the six stages of Gestalt Language Processing (GLP) compared to the stages of Analytical Language Development (ALD). 

Go to ausm.org to download the 2023-2024 Education Catalog with the details of all the educational and social opportunities offered by The Autism Society of Minnesota.

MNeurodivergent is a social club rooted in a vision of bringing Neurodivergent Minnesotans together to build meaningful connections.  Its core principle is to foster an environment where all are treated with dignity and respect regardless of ability or preferences. Go to the bulletin board at todaysautisticmoment.com and click on the Meet Up link to become a member and attend their events.

Matthew the #ActuallyAutistic Coach has room in his Finding Your Autistic Self Group Coaching Groups. In the groups, participants learn about unmasking strategies, coping tools, burnout & post-burnout support and much more. Go to autisticcoach.com and click on Autism Groups for more information. While visiting Matthew’s website, be sure to check out the Free Autistic Discussion Circles for Autistics of various age groups, careers, students, and ethnic groups. 

Today’s Autistic Moment is sponsored in part by Looking Forward Life Coaching.  Looking Forward turns stumbling blocks into stepping stones towards success.  Go to lookingforwardlc.org for more information.

Today’s Autistic Moment is here because of the generosity of supporters and sponsors.  Please join the supporters by clicking on Support Today’s Autistic Moment on todaysautisticmoment.com.  If you work for a company and/or organization that supports Autistic Adults and the movement for Neurodiversity, I would love to have you sponsor ads on the show.

If you would like to sponsor an ad or have questions about Today’s Autistic Moment, please send an email to todaysautisticmoment@gmail.com.

Thank you for listening to Today’s Autistic Moment: A Podcast for Autistic Adults by An Autistic Adult.

May you have an Autistically Amazing day.