Physical Autistic Leadership: Ask Us for Directions

Transcript

Physical Autistic Leadership: Ask Us for Directions

May 25th, 2025

Episode Preview

David Gray-Hammond and I will discuss the importance of Physical Autistic Leadership, by emphasizing the need for Autistic individuals to understand and advocate for our own bodies. We will highlight the challenges that Autistics face in medical settings, where professionals often lack any understanding of how Autism affects the body.  David will share his personal experience with misdiagnosed fatigue and diabetes, illustrating how Autism affects physical health.  We will stress the importance of interoception and the need for holistic health care approaches. Our conversation will also touch on the broader issues of bodily autonomy, particularly for marginalized groups, and the necessity for Autistic communities to support each other across all age groups.  Welcome to this episode of Today’s Autistic Moment.

Segment 1

♫ Today’s Autistic Moment’s Theme Song, Today is Your Day ♫

Today is your day on Today’s Autistic Moment: A Podcast for Autistic Adults by An Autistic Adult. Where Autistic Adults get to be yourselves in a space that is safe and made especially for you. While listening to this podcast, you stim, and fidget all you like.

This first segment of Today’s Autistic Moment is sponsored by The Autism Society of Minnesota, known as AuSM throughout Minnesota’s Autism Community. As Minnesota’s First Autism Resource for more than 50 years, AuSM serves the whole state, the whole spectrum for the whole life. Visit AuSM at ausm.org.

Please visit todaysautisticmoment.com where you can listen to the podcast, get transcripts, program updates, and read the guest bios pages. You can also visit the Adult Autism Resources Links Page. Please visit the Future Shows Page to read the titles, guests, and descriptions of all the shows coming up. The transcripts are sponsored by Minnesota Independence College & Community. There is a link provided to get access to a document form of the transcript without the purple-colored background so that you can print it without using up the ink on your printer. The written document has a font that is accessible for dyslexics. There are additional transcripts available in Spanish, German, French, and Chinese Simplified.

Please follow Today’s Autistic Moment on Facebook, Instagram, LinkedIn, and Blue Sky.  Join Today’s Autistic Moment Community Group page on Facebook for conversations and updates. Please subscribe to the YouTube channel @todaysautisticmoment to watch Autistic Voices Roundtable Discussions.

I am very excited to inform you that Today’s Autistic Moment in partnership with Umbrella US have created Autistic Advocates United: An Autistic & Allies Grassroots Movement. Our mission is driven by the concerns of Autistic individuals. Autistic Advocates United works in solidarity with allies to defend the rights of Autistic people, protect access to essential support services, and promote public understanding.  We are forming working groups to survey and come up with strategies for our advocacy.  Please go to our website autisticavocates.com and join our group on LinkedIn for more information, updates and to participate.

After this first commercial break, David Gray-Hammond will join me to talk about Physical Autistic Leadership: As Us for Directions.

♫ Segment Ending Music ♫

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 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

♫ Autistic Coach Ad ♫

♫Lisa Morgan Ad♫

Segment 2

♫Segment Beginning Music♫

Philip King-Lowe 

David Gray Hammond, welcome back to Today's Autistic Moment. It's been a while since we have seen you. So welcome back, my friend.

David Gray-Hammond

Thank you.

Philip King-Lowe

Thank you. Yeah. I've invited you here because I have been watching your posts on various social media networks, and you have been doing a lot of advocacy informing regarding um medical care and uh interception with Kelly Mahler and my focus for this year is Navigating the Future of Multidimensional Autistic Leadership. And one of those multi dimensions of Autistics is that we are physical, and it seems to be one of the most misunderstood. It isn't even covered like it really should be. And I'm sure you've had the experience. I've had the experience, and many of us Autistics have had the experience where we have worked with medical professionals who question whether or not we know our own bodies, our own brains, our own anything. And so, I want us to spend this time together demystifying that sort of thing. And you know about the misinformation regarding this. So, let's build a foundation for our conversation today. You know what does this topic of Physical Autistic leadership for Autistic Adults to be multi-dimensional. What are some basics about this topic that you feel our listeners need to know?

David Gray-Hammond 

Well, I think the starting point is, you know, when we talk about, what is Autism? What are Autistic people? Autism itself is an abstract concept. The thing that actually exists are the Autistic people themselves. And as people, we are physical beings. We reside within the body we are born with, and we are subject to the experiences that that physical body has. Now, we often talk about things like Dr. Luke Beardon's golden equation of Autism plus environment equals outcome. And rightly so, we consider things like the physical space we occupy, such as classrooms or workspaces or grocery stores, but in truth, our physical bodies are an environment in themselves. But the difference is we can't escape that environment, so it's important that we take note of our physical being and meet the needs of that physical self, because that is the one environment we have to reside in for our entire lives. And if, if that environment is hostile, then our well-being is going to decrease.

Philip King-Lowe 

Yeah. And when it comes to our physical being, I feel like the one thing that is lacking in our conversations about being Autistic is that we are physical beings. I mean being Autistic does impact our bodies in ways that are unique in their own way. But, you know, I think, I think that's the one part of one particular conversation about Autistic people that seems to be missing. Do you agree with that?

David Gray-Hammond 

I absolutely agree. And I think it's part of a broader issue where Autistic people are kind of taught to separate themselves from their physical being. You know, you know, our experiences of pain are taught to us as being, you know, incorrect or inaccurate our experiences of the sensory world around us, which are our experiences of the sensory world around us, which occur within our physical being. You know, we're told that, you know, it's not as bad or as or as difficult as we think it is, even going as far as things like our own sexuality, which is an inherently physical thing. You know, we're taught to separate ourselves from those physical aspects of our humanity, and so I think for a lot of us, we end up experiencing a great deal of almost disassociation from the physical environment we occupy, which is our bodies.

Philip King-Lowe 

Right. Yeah, yeah. Well, I talked at length with some others in the past, and I'll just bring this to you. I have had to become my own advocate when it comes to working with medical professionals that being doctors, or for me, diabetes educators and so on and so forth, because the medical establishment does just not there's no actual education in medical schools about how Autism will have a unique impact upon the body. And one of the funniest things that to me is funny. I have to laugh at it, otherwise it'll be too serious. But I have had to go to a few neurologists who are supposed to be medical experts about the brain. Yet, the one thing that those neurologists don't seem to be able to comprehend or conceive, take whichever word you want that the Autistic brain is going to impact the body uniquely. And I can't tell you how many neurologists I've been to who don't understand that connection. I find that just like somebody you know, somebody missed the missed the boat somewhere. So, give me your thoughts on that.

David Gray-Hammond 

I actually, I have an interesting anecdote here, because this is something I've been through myself in recent months, which is that, you know, I was experiencing a great deal of fatigue, and I was just exhausted all the time, and my health was deteriorating. And, you know, doctors saw that I was Autistic, and they went, oh, you know, it should co-occur in mental health issues. And you know, even though I'm fairly well respected in the Autistic community, people might be surprised to know that I jumped straight to, you know, I'm experiencing Autistic burnout. And anyway, eventually, you know, I had some blood tests done, and it turned out that not only was my liver struggling as a result of issues I'd had with drugs and alcohol in the past, I was also type 2 diabetic, and so what I thought was Autistic burnout, and doctors thought was mental health issues, was actually a physical health problem. But what I've discovered, particularly with the being diabetic, is that, you know, my experience as an Autistic person affects my blood sugars. Yes, it does. So, you know, if I'm more burnt out, I'm more likely to struggle to regulate my blood sugars, even with medication. Um, I've noticed that if I'm under a great deal of stress, I will experience hyperglycemia very frequently. I mean, very low blood sugars. And strangely enough, because of the way my body interprets those internal signals my interception, I don't always notice that my blood sugar is getting low or high, and it's got to the point where I'm having to pay for a continuous glucose monitor. Continuously monitors my blood sugar because, particularly when I'm under undue stress or in environments that don't accommodate my sensory needs and access needs, regulating my blood sugar becomes incredibly difficult.

Philip King-Lowe 

I know exactly what you mean. I am a type 2 diabetic myself. I recently started wearing, you know, the sensor to monitor my own blood sugar. And so, I know exactly what you're talking about. And yes, and I love how you brought in the matter of interception. And I can tell you that in the last four or five years, I have worked with two what we call diabetes educators. These are nutritionists who have had the additional training to educate people about diabetes, and I have done my fair share of advocating about interoception. Because interoception also affects how our brain communicates with the body. Body communicates with the body. Body communicates with the brain about when we're hungry versus when we're thirsty versus when we're full. You know, those sorts of things, and it also can impact our brain getting the message from the body that you know, like how much food we may take in versus when we're full, and those sorts of things. I have had to explain to diabetes educators what interoception is. And again, most of the, I'm sorry, all of the diabetes educators I have interact with, were never told about interoception. And so, you know, this is where I continue to say that we could actually have them read all the books and get all the information we might want them to have, but there's still no substitute to hear it directly from us. And so, you know, like I say, Kelly Mahler, by the way, if you don't know who she is, everybody, Kelly Mahler. That's M, a, h, l, e, r, I believe, but she's done extensive research and workshops about interoception. She's absolutely brilliant on that matter, and she's brought the matter of interoception, really, to the forefront of her work to help Autistics and others who out, who advocate for us, to get an understanding of what that is. Do you have anything to add to that David?

David Gray-Hammond 

Yeah, I think you know that there's a there's a significant issue at play here, which is that, I mean, it affects everyone, but I think it's particularly pertinent for Autistic people. You know, the way healthcare is set up at the moment, particularly in sort of Western cultures, everything is separated into specialisms. It's all siloed off into separate areas. And when it comes to, let's say, Autistic people, you need a holistic approach, because, you know, my physical health is not separate from my Autistic needs. No. As I demonstrated in my anecdotes about my blood sugars, you know, my needs as an Autistic person and whether they're being adequately met, directly affect how my physical health plays out. And what might be a straightforward physical health issue for a non-autistic person could be incredibly complicated for me, as an Autistic person with sensory differences, such as interoception, and, you know, perhaps being more prone to burnout and high levels of stress and needing to do energy accounting to know, you know, what I am and I'm not capable of from day to day. And you know, in reverse, you know, things like, you know, I experience quite a lot of chronic pain that can have an effect on my needs as an Autistic person, because on days when I'm in more discomfort with my physical body, I have a greater level of need that that I require accommodation for in order to succeed as an Autistic person. And it's part of seeing Autistic people as these multi-faceted, you know, people who have dynamic needs. You know, we're not brains residing in bodies that have no impact on us. We are body minds. You know, our brain and body are one thing. You know, our brain is part of our body. So, if we have an Autistic brain, we have an Autistic nervous system, and the Autistic nervous system controls our physical body, Autistically and interprets Autistically.

Philip King-Lowe 

Yeah, yeah. And, you know, a few years ago, I also did an episode with Kelly Lenza about Fat Phobia for Autistic people. Um, I happen to be an Autistic person in a larger body. And you know, we have experienced our issues with, you know, doctors giving us endless lectures about being in the larger body and what that should mean or shouldn't mean. And we, we definitely go through a lot of that kind of thing, you know. And let's also talk about the fact that for a lot of us, those of us who are diabetic, for example, we're told to eat certain foods or not eat various foods for various purposes, but because of our maybe food texture sensitivities, the things we can eat, the things we can’t eat, those are also going to be different, and that too is part of our physical being, eating and even exercising. I share with you that I live with some chronic pain myself. When my body is in pain, certain exercises are going to be more challenging, and so we have to find our own unique ways of exercising or moving, you know, and our experience with pain has a lot to do with our has a lot to do with our proprioception, and this is where we also talk about hypo sensitivity versus hyper sensitivity, which has to do with how we experience pain. So, let me interject here by telling you. Many of you have heard me say this before. Back in 2018 I had a moment where I was in so much pain it was literally barely able to walk from my living room into my kitchen without being in severe, severe pain. And the thing is, is before, before November 2018 I was uncomfortable, but I didn't, wasn't in a whole lot of pain. Then in November 2018 I was in horrific pain. And it was later discovered that I was in that pain because I had a lumbar disc protrusion that was causing the pain. But I remember asking my therapist at the time, my psychotherapist, I said, “why is this happening to me?” And he he's very knowledgeable about Autistic and Autism, but the point is, is that he explained to me what had happened is, is that up to the point where I started really feeling it, that my body was actually hypo sensitive to that pain, and then when I became more than aware, his reply was that the neurological receptors that talk to the brain was more intense, which therefore that pain was more intense, and that's why I was experiencing the pain so drastically. So, I had to really change a lot of my life, and I still use the wheelchair sometimes, like if I'm out and I have to go longer distances, because my back pain will really make it very difficult for me to get around. So, have you had any experiences of that kind? David?

David Gray-Hammond 

I have actually. I have issues with discs in my lumbar spine, and I can think of one particular occasion a year or two ago where I was in so much pain I could barely move. But what was interesting for me was that, you know, doctors didn't really listen to how much pain I was in, because I can be in absolute agony, and sat here talking to you like this, you know, and it's not because I'm not feeling the pain. It's more that it's almost like we talk about Autistic people sometimes having auditory processing differences, where, you know, we can hear the words, but our brain is not processing what it means. I get a similar thing with pain. I get, like the interoceptive feelings and proprioceptive feelings of pain. And I know I'm in discomfort, but it's like my brain doesn't translate those feelings into something that doctors recognize as a person in severe pain. And you know, I find it interesting, because I think one of the challenges I have is I'm probably in pain a lot more often than I realize, but because of my monotropic attention style, where I tend to give this deep level of attention to a restricted number of things. Often those things drown out the pain, and then it's when the pain becomes the focus, when my attention shifts towards the pain, that's when I notice how much pain I'm in. And this seems really inconsistent to doctors, and they struggle to understand it, because, you know, so much of the way they're trained is based on non-autistic presentations, and they don't understand the way our attention works, or the way our sensory experience works. And you know, I, myself am a quite large man as well. So even if they do listen to me very often, I'm told it's because I need to lose weight and no further action is taken. But also, I think, you know, I tend to perhaps not show pain as much because of the number of times I've been invalidated by healthcare professionals. Kind of internalized this idea that actually I can't be in as much pain as I think I am. And there's probably people who are in much worse pain, because if I was in worse pain, you know, I would, I would look like this, because I know this, because doctors have told me this, and it can be difficult to dismantle that internalized ableism that the health care system has instilled into me.

After this next commercial break, David and I will talk about how important it is for Autistics to engage ourselves in support of our intersectional communities and their bodily autonomy, and that we are all interconnected in helping each other advocate for our physical Autistic leadership.

♫ Segment Ending Music ♫

Commercial Break II

Have you recently received a diagnosis of Autism? Do you have so many questions about what Autism is, and want to talk with an Autistic who has been where you are?  Contact me for TAM Autistic Consulting Services.  As the host of Today’s Autistic Moment, I can answer your questions and give you some Autism education to make recommendations for resources to help you decide what other services you might need.  Go to todaysautisticmoment.com and click on the menu option TAM Autistic Consulting Services to learn more about my consultation services and make an appointment.

♫Looking Forward Life Coaching Ad♫

♫MICC Ad♫

♫Best Care Ad♫

Today’s Autistic Moment’s guests and programs to bring you conversations with Autistics who are engaged in the work of advocacy. Individually and collectively, Autistics are leaders for upholding the dignity of Neurodiversity and impacting systemic change.  Today’s Autistic Moment is promoting the Neurodiversity Movement by bringing Autistic people to the forefront of our mission.

Today's Autistic Moment is seeking your financial support to continue the important work we are doing together. Supporters can contribute in several ways:

1.    You can make a one-time donation through the Ko-fi icon when you tap on Support Today’s Autistic Moment on todaysautisticmoment.com.

2.    You can become a monthly subscriber via Patreon.

3.    You can purchase Today's Autistic Moment merchandise, such as a 16oz drinking cup or a lapel pin, from the Logo Shop.

While donations are not tax-deductible, they help maintain Today’s Autistic Moment as a safe space for Autistic Adults. 

Thank you for supporting Today’s Autistic Moment.

♫Segment Beginning Music♫

Segment 3

Philip King-Lowe 

You know, I went to a doctor once myself, and I had told this doctor about my experience with pain as an Autistic person and versus hypo sensitivity and hypersensitivity, and this person looked like we looked at me with, you know, how in the world would you know something like that? You know? Yeah, we're going to move into my second question. We know that Autistics are engaging in the topic about Physical Autistic Leadership, and we're going to talk about that in light of what we have been talking about. But I first want to say that this is where my words from the past need to come to our forefront again. One of the most important things you must do as part of your physical Autistic leadership is you must become the expert, not an expert. The expert about your own brand, make and model of Autism, and you must become the expert about how you communicate about it. Because, as I've said on numerous occasions, if you don't know your own brand, making, and model of Autism, it is very difficult for you to communicate your needs. And even if you do, you're still going to be working on how you communicate those needs. You know, this is how you get engaged in this work. And you know, when we talk about Autistic leadership here, self-knowledge is an important part of engaging in your leadership here, and you know, so go ahead and comment on that David.

David Gray-Hammond 

I think it's, it's interesting, you know, how as Autistic people, we do have to have that expertise. Because, you know, it kind of surprised me to learn many years ago that non-autistic people often don't feel that way. You know, they defer to the traditional experts, but I think you know, Autistic people, like many marginalized groups we are, we spend a lot of time in doctors at offices and therapist’s offices, and, you know, various professional settings, being the educator rather than the patient.

Philip King-Lowe 

Right.

David Gray-Hammond 

And you know, there's kind of, there's a benefit to this, which is, you know, we, we are empowering the voice of lived experience. But there's also an ethical concern to my mind, which is, should Autistic people be forced to provide a great deal of free emotional labor just to get something as simple as help off of a doctor? I think this highlights the disparity between, you know, professional attitudes and Autistic lived experience, because professionals, I think, often don't realize how important it is that they learn about diverse experiences. And further to this, many of them don't feel they should have to, which means that Autistic people, whether they want to or not, are forced to be the expert, and that that's an additional complicated layer of struggle on top of, you know, we're often going, you know, because of health concerns and a great deal of distressing experiences. And on top of that, we're having to be an educator as well.

Philip King-Lowe 

Yeah, and unfortunately, that's not going to change very quickly in the future. So, the more you can learn and the more you can learn to communicate, that's going to be your best tool of advocacy. And especially here in the U.S., I'd like to take a moment to talk about what's been happening with bodily autonomy, and especially this is where I like to talk about our intersectional Autistic communities, which include people of color, people with disabilities, whatever those disabilities may be, but also especially for our transgender Autistic community here, like I said, especially in the U.S. right now. Because of the of the crackdowns, they've been doing on transgender people. And I'm not going to go into details, because it's for many of our Autistic people. I've already triggered you, and I apologize. My purpose is to give some advocacy for you and not to trigger you, but I do want to speak up and say that the moves that have been made towards our transgender people, when you consider how many transgender people are Autistic, is absolutely unacceptable. It should not have happened that way, and it should not be happening that way. And it goes back to, you know, a few years ago, when a lot of the states were passing these very restrictive laws prohibiting gender affirming care for our transgender Autistic youth. A lot of those bills actually wrote in them that "gender dysphoria is common among people with Autism Spectrum Disorder," and I do fear that the reason RFK is doing some look into the cause of an "autism epidemic," which is really ridiculous, is because they know that the LGBTQ community is intersecting with the Autistic community. I really do think that's part of the problem.

David Gray-Hammond 

You've raised an interesting issue there, though, because we're having similar problems here in the UK, maybe not as well publicized, but pretty similar. And it highlights to me the fact that, you know, Autistic people and really all marginalized people, but you know, as Autistic people are, our bodily autonomy kind of goes out the window. No longer, no longer is our body ours. It's not our environment. It becomes a site of political debate and ideological struggle. Absolutely. And rather than having the freedom to use our bodies as we wish, you know, within the purposes of doing no harm, instead, we become a mascot for whatever side of the ideological debate is arguing. And I think you know this is why taking leadership of your physical self is important, because I believe people have a right to decide if their body should be used as a part of a political debate, because I think people forget that you know what to them is, you know a number on a spreadsheet or a person walking through a door. We're human beings with human lives, and they intersect in many ways, and we deserve not to constantly have our right to bodily autonomy questioned or told that we can have autonomy, but not in that way.

Philip King-Lowe 

Yeah, and what I really find offensive with those things is that there's a statement underlining in that thing that somehow Autistics and transgender people are incompetent to make our own healthcare decisions. What do you think?

David Gray-Hammond 

Absolutely. And I hear this a lot, and I see it in the UK, being Autistic or trans and gender diverse, or really any kind of minoritized physical body, you are seen as being less able to make decisions about what to do with that body. And one thing that interests me in particular, and I'll bring it up, because obviously it's an area of focus for me. You know, people often miss it, but there’s the prohibition of substance use, which is essentially, you know, a blanket statement that people can't decide what is and isn't safe for them to do. Now, regardless of what side of the debate you fall on with substance use. It's interesting how you know we prohibit certain actions as this use of your body, or putting this thing in your body, or doing this with your body, is illegal, and we believe that you can't stop yourself from doing it, so we've made it illegal so that you don't make that silly decision, and it kind of over the years, it's broadening out, and more and more minoritized experiences are becoming litigated, and that's got to the point where we're literally denying people health care on the basis that we disagree that that health care is necessary, regardless of what healthcare experts say to the contrary.

Philip King-Lowe 

Right, yeah, I think those are excellent points. And you know, the other thing too is that something that is not often said, and that is there is a right to make a mistake. You know?

David Gray-Hammond 

Absolutely. And, yeah, go ahead, here in the UK, we have something called the Mental Capacity Act. And what this essentially says is that you can't, you can't assume a person to lack decision making capacity across all domains, you have to assess their capacity for each decision. But one of the key points of the Mental Capacity Act is that you can't assume a person to lack capacity purely because of their diagnosis. You still have to assess that capacity. But where this gets complicated is in the UK, we have the Mental Health Act where, despite a person having capacity, if they have certain psychiatric diagnoses, certain treatments can be given without consent, regardless of capacity. So, you start to get this conflicting nature in in legislation, but then we get to this more complex issue where I think about particularly, as we're talking about trans+ issues, you know, we've got this idea that, well, it's not even an idea. We've had a blanket ban put on puberty blockers for trans youth in the UK. And I find it interesting that it was decided that it was too unsafe for trans plus youth, but not unsafe enough to stop cisgender youth with precocious puberty or early onset puberty. And to me, that that says that what you're fundamentally saying is you are assuming that all trans+ youth are unable to make a safe and effective decision regarding that aspect of their health care. And I think that is ethically wrong, and it's very relevant to Autistic people, who are hugely represented in that population. And you know, when we go back to that idea of our physical body being an environment, as I said, if that body feels like a hostile environment, your well-being is going to decrease. And so, by denying, you know, a large proportion of Autistic people access to gender affirming health care, you are intentionally creating a hostile body mind environment. Right. You're going to wonder at some point, why is it that all these Autistic people are experiencing such negative outcomes?

Philip King-Lowe 

Right. Yes, yes, yes. Thank you for saying that so beautifully. I tend to agree with that. My last question really has to do, and I've been saying this throughout my fifth season about interdependence. You know, let's talk about how Autistics are leaders throughout their lives in their unique context. You know, this is where some Autistics, we kind of would benefit from some community work. What I mean is, is to be talking with other Autistics about your experiences with your bodies and that sort of thing. I guess, you know, how can we, how can we talk about some ways that Autistics can be proactive here and not just reactive here. We need to be proactive with this. And what are some things that you think we could do?

David Gray-Hammond 

Well, I think you know, it's important to, for a start, ensure that we are pushing our voices of lived experience into the research sector, because a lot of what is done in healthcare and further legislation around healthcare is built upon research that's been done in the past. And as we know, a lot of medical research is incredibly biased. It can often be very white centric, very, you know, centered on males, and particularly you know, white European males. And often, you know, there's an absence of research into, you know, experiences through the lifespans. You know, older generations. You know they might look at older generations for, you know, traditionally, traditional issues of older age. But you know being Autistic and the physical experiences we have that happens throughout our entire lifespan. So, we need Autistic people of all backgrounds, all ages, all ethnicities, all gender identities, every intersection to we need to empower each other, to get our voices to the forefront, to say that actually there is a huge swathe of human beings that that have experiences that you're not accounting for. And I think you know, part of this is the activism of the Neurodiversity movement. There's the participatory and emancipatory research that other Autistic people do in the academic sphere. There's the campaigning that many Autistic people, do you know, and part of it is directly resisting the systems that exist within our cultures. Because I think, you know, sometimes politics has too much control over the healthcare sector. Definitely. Our physical bodies. And so, I think it goes beyond just, you know, advancing research and getting knowledge out there and into acts of resistance, you know, and subverting those normative ideas that privilege has put in place. And I think what's really important is that, you know, we particularly focus on getting those further marginalized Autistic voices to the forefront, because even within our own Autistic community there is a great deal of privilege for some groups and a great deal less for many others. And you know, I wouldn't want the Autistic community to be able to be accused of being exclusionary. But sadly, there are areas where, you know, there is still bias in, yes, there is voices that are coming forward. And so, I believe that you know, it's not just about, you know, talking about Autistic experiences. It’s about advancing Autistic experience for all of its intersections, and maybe sometimes being willing to put the microphone down for ourselves and hand it to another person. And I believe that by doing that, we're not just improving physical leadership for Autistic people, but for everyone out there.

Philip King-Lowe

Right. Yeah.

After this final commercial break, David and I will conclude the conversation by talking about our aging Autistic Adults who we need to advocate for, and what to do if you are at an appointment where the doctor is disrespectful. Today’s Autistic Community Bulletin Board will follow.

♫ Segment Ending Music ♫

Commercial Break III

♫ ITI Assistive Technology Ad ♫

Future Shows

LGBTQIA+ Pride Month will be observed on Today’s Autistic Moment.  On June 8th, Jillian Nelson the Policy Director at The Autism Society of Minnesota will be my guest for the episode Queer Autistic Leadership.  Jillian and I will bring you an insightful conversation about Queer Autistic leadership in a time when Queer and Autistic people are being marginalized so aggressively in 2025.  We will talk about how Autistic and our allies for Queer and Autistic people can advocate for and with our communities.

On June 22nd, Jax Bayne will be my guest for the episode Autistic Nonbinary Leadership: Binary is the Barrier.  Autistic Leadership is about mutual support and empowerment. Jax Bayne is an Autistic nonbinary thought leader and a peer support worker. Jax will talk about how Autistic nonbinary people are an important part of the cultural shift away from systemic oppression.

Carole Jean-Whittington and I are going to co-host the Summer of Self-Care Series.  Look for updates coming soon on the Future Shows Page on todaysautisticmoment.com.

Thank you for listening to Today’s Autistic Moment.

♫ Segment Beginning Music ♫

Segment 4

Philip King-Lowe 

Now, David touched on something that we have many issues that we need to confront. We do have some systemic racism. We have other problems that need addressing within our Autistic communities. And that sort of thing. But there is also one other issue within the Autistic community that we need to name. It's the matter, excuse me, of ageism. Okay, if there's one part of the Autistic community that is not at all well represented is those who are aging. I invite everybody to go back to 2021 to my fourth show of Today's Autistic Moment, and I said Aging Autistics: What We Needed Yesterday. Dr Theresa Regan is a Certified Autism Expert. Works in the St Francis Medical Center in Illinois, and we talked about the aging impact of Autistics. The Autistic brain also ages a little differently, too. And one matter that Dr Regan brought up is how many times she has been called to a neurology appointment because a patient was diagnosed with dementia because the neurologist who diagnosed that individual saw some executive dysfunction, saw various things going on, and so they diagnosed them with dementia and are and had been prescribing drugs, but they weren't seeing the physical, physical effects of dementia. So, Dr Teresa Regan often goes, goes to where they are, and reexamines the patient and does a little, does an evaluation of their own, and low and behold, that person does not have dementia. They are Autistic. And then she has had to explain to the neurologist the difference which they don't see, and as is, they have often again, the doctor has prescribed medications that wind up being destructive. So, the point being is that, you know, when we're talking about a community that we really need to be interdependent with it's the aging Autistic community that also knows that there are changes going on in their bodies and their brains. We do not have anywhere near enough discussions about what's happening with Autistics who are aging. And you know, David, if you want to add to that, go ahead.

David Gray-Hammond 

Yeah. I mean, I think particularly in terms of access to the Autistic community, because we know from research that, you know Autistic community connection can mitigate some of that minority stress, or those cumulative stresses the Autistic people experience as a as a marginalized group. And obviously this has, you know, ramifications for our physical health, as well as we've discussed throughout this podcast. And I think for older generations, you know, there's a matter of accessibility issue, because, you know, they might say the wrong thing or do the wrong thing because, you know, they they've not had the access throughout their life to the things that younger Autistic people may have, and so they may be at an earlier stage in their learning you know about these things. However, because they're perceived as older. They're also perceived as, you know, well, they should know better, and I think people are often much harder on older Autistic people when they make mistakes, which can make it harder to access those community spaces. But also, I would highlight that you know, the number of older Autistic people I know of who their Autism gets ignored late into life, because as they get older, they have perhaps more physical health complaints, and those physical health complaints overshadow any chance of an Autism diagnosis. Because, you know, doctors feel it's more important to address the physical health concerns than any potential Neurodivergence, and then the doctors failed to see that. Actually, you know, for this person, regardless of age, addressing these issues holistically and saying, okay, well, actually, the Neurodivergence and the physical health issues are interconnected here. You know, if we address those things concurrently, we perhaps see better outcomes for older generations. But on so many fronts, the perception of being older seems to say to people that it's less important for them to be part of an Autistic community, less important for them to have an Autistic identity. And I know for a fact, it's not, you know, my own mother, she won't mind me saying, you know she's in her 60s, and the number of times she said to me, oh, there's no point me getting my Autism diagnosis, because you know what's it going to do? And you know, to her, I always say, You know what not only does it help you understand your experience better and feel validated in that, but it also shows you that you've not been as alone your whole life as you felt, and it helps in the environments you're still accessing, because we don't hit retirement and just stay in our homes forever. You know, we have needs that continue from the day we're born to the day we die, both physical and psychological. And it's only by seeing us as whole beings, both physical and psychological and addressing all of those needs and they're into interlinking, you know, between them. It's only by addressing those issues holistically. That that people are going to have good outcomes, and regardless of age, we all deserve to have a good outcome.

Philip King-Lowe 

Yes, I would agree with that. I have also heard my share of stories that we actually have a lot of Autistics who are discovering that they are Autistic in their 60s, who have described it as a very difficult transition for them, because by that time, they have lived the majority of their lives and all that they go through to you know as asking and answering the same questions we all do, like, what if I had known late early on, but I tend to agree with that. Well, we certainly don't want to leave our Autistic people feeling like there's a no-win situation here for them. And we've been talking about interdependence and that sort of thing. Let me give some final thoughts, and then I'm going to let you do David too before we finish up here. There are some things you can do to advocate for yourself in medical situations. One of them can be and not all of these are going to work for everybody, and if that's the case, that's perfectly fine. One possibility is that you find a way to write or type out a list of the things that you are most concerned about, and that perhaps you do some kind of research, if there is any out there, but you can do some Google searches or searches about a particular matter and Autism. For example, I went to my doctor a few years ago because I was having some trouble with insulin, and I learned that back in I think it was 2012 or 13 that someone had done some research into the fact that a lot of Autistics have issues with insulin resistance. Okay, so sometimes bringing something like that with you can help. No guarantees here, um, also some of the, you know, sometimes you might write up a list of certain things. I did that with my doctor. You know, these are things I would like you to know about my being Autistic. If I happen to be experiencing sensory overload for a hap perhaps, maybe, can you move me to another room where I can kind of be quiet for a little while, or do something like that. There are some things you can do, and you can try, but, you know, again, I think it would be good for us Autistic to have some conversations with each other about what's going on with our bodies and that sort of thing, our bodies, our brains and that sort of thing. But the other thing is that if you are somebody who is non-speaking, if you have a caregiver, or you have a means of working out these things with a caregiver, do some talking about. "If I go to the doctor. These are some things I would want my provider to know." And again, if we can have them bring something that backs it up, that's all that can be worth it. I'm going to let David finish this out, and then we're going to complete the day. So go ahead, David.

David Gray-Hammond 

I think the thing I'd really like people to take away from all of this is that your body, your physical self, it's not an example in someone else's ideology. It belongs to you, and it's your decision what your physical body and what your physical self means. And you have a right to have your physical needs met, and it's okay to say that actually your whole body is Autistic, and all of your experiences as a physical being are Autistic experiences. And rather than seeing your body as the site of someone else's debate, perhaps it's best to reframe it as the site of your own resistance in a system that has failed to meet your needs, and use that bodily autonomy to self-advocate and fight hard so that perhaps the next person who comes after you doesn't have to fight quite as hard as you did.

Philip King-Lowe 

Yeah. One last matter. Kelly Lenza brought this up a couple of years ago, if you are having an issue with a physician of any specialty that is who is not seeming to give you the attention or respect you deserve, it is perfectly okay to leave the appointment. You know, I there's no other way to say this. I feel a lot of us Autistics are led to believe that we have to accept abuse. And my words are, no, you absolutely do not. And therefore, if you are faced with a medical professional who, again, is disrespecting you, it is okay to leave the appointment and try to find another medical provider. Would you agree with that David?

David Gray-Hammond 

I absolutely agree we have the right to decide where our bodies are, how they're treated, and the experiences that we're exposed to, and if someone is being unpleasant or abusive, there is no obligation to endure that no matter what.

Philip King-Lowe 

Yeah, I agree. David Gray-Hammond, it's always a pleasure to have you here. Your information is always very thorough and very well thought out and very well-articulated, and so I'm so grateful when we have these conversations together. You know, I value what you have to say every time you're here. So, thank you for being here today, David. We hope that all is well with you.

David Gray-Hammond 

Thank you for having me. It's always a pleasure.

Philip King-Lowe

Thank you.

Transcribed by https://otter.ai

Today’s Autistic Community Bulletin Board

All these events and many others with their links not mentioned here are available on

todaysautisticmoment.com/bulletinboard.

You are invited to the Adult Coffee Club for Autistic Adults in Minnesota. They are held on the second Tuesday of every month (weather permitting) at Dogwood Coffee located at 2700 University Ave W. Suite 100 in St. Paul, Minnesota. The Zip Code for your GPS is 55114. The Adult Coffee Clubs will begin at 4pm to 6pm on June 10th. July 8th. August 12th.

Understanding Autism virtual classes are offered by The Autism Society of Minnesota. The next classes will be on June 9th, 6-7pm. July 14th, 10-11am. August 11th, 12-1pm. Classes are free of charge, but you must register to attend.

On June 6th, beginning at 9am to 12pm Mason Esposito will present a workshop at The Autism Society of Minnesota entitled: Neurodivergent Intimacy: Tools for More Fulfilling Communication, Relationship Dynamics, and Sex Lives for Neurodivergent People and Their Partners. Registration is required to attend this workshop.

The Summer Autism Certification Virtual Class at The Autism Society of Minnesota will be on Friday August 22nd, 29th, and September 5th beginning at 9:30am to 12:30pm.  The objectives are understanding Autism Spectrum Disorder and how it can affect communications, relationships and behavior. Each session is limited to 15 participants.  Register early to attend the classes.

Go to ausm.org to get more information about these and other social and recreational programs, educational events, counseling services and support groups at 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 their website mneurodivergent.org for more information, become a member, volunteer and attend their events.

Today’s Autistic Moment is here because of the generosity of supporters and sponsors.  Please go to todaysautisticmoment.com and select “Support Today’s Autistic Moment” to donate. 

If you 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.

♫ Closing Background Music with credits ♫

All of the guests meet with me on Zoom to record the interviews. The interview transcripts are provided by Otter. The podcast is prepared and edited on WavePad Masters Edition by NCH Software.  The podcast is published by Spotify for Podcasters.  The Music that you hear is licensed to Today’s Autistic Moment by premiumbeat.com.