Special Edition: What We Have to Say

Transcript

Special Edition: What We Have to Say

July 27th, 2025

Today’s Autistic Moment presents a Special Edition: What We Have to Say.  Funding for the Special Edition is provided by The Autism Society of Minnesota.  Minnesota Independence College & Community. Best Care. Looking Forward Life Coaching. The Autism Mentorship Program. The Actually Autistic Coach Collective. And many of our supporters like you. 

Thank you.

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In the first three chapters of Eric Garica’s book We’re Not Broken: Changing the Autism Conversation, Eric traces the history of Autism research and politics through the second decade of the 21st Century. 

Over the course of many decades’ researchers have studied Autism and found that there is not an epidemic. Autism is not a disease. Autism is not caused by vaccines. In 2013, the DSM-V was updated to say that every person affected by Autism was said to have Autism Spectrum Disorder.  The new DSM-V replaced the fourth edition in 1994 that said that those believed to have “high functioning Autism” had Asperger’s Syndrome named after the late Hans Asperger.  Those believed to have "low functioning Autism” had Pervasive Developmental Disorder.

Over the past decade, it is estimated that over 5 million adults in the U.S. have been diagnosed with Autism.

Over the past 20 years a movement has arisen to recognize that people who have Autism should be recognized by the use of identity first language as Autistic people. Autistics have been joined by other Neurodivergents such as ADHDers, Dyslexics, to organize the Neurodiversity Movement.  The movement has worked to see that Autistics are not disordered because of Neurological differences, but that we are who we are and should be included in seeking equality and equity in all aspects of life.  These many advances have included the work of Dr. Nick Walker who helped create the Neurodiversity Paradigm.  The Neurodiversity Paradigm recognizes every brain that is Neurotypical and Neurodiverse as belonging to the same family. And whether Autism is a disability or not, it should not impact on the quality of life that Autistic people deserve.

Now, after 25+ years of progress, all that faces a complete collapse.

On April 11th, 2025, Health & Human Services Secretary Robert F. Kennedy, Jr. pledged that by this Fall we will know what causes the Autism Epidemic.   The choice was deliberate as we were celebrating what some call Autism Awareness Month and others call it Autism Acceptance Month.

Sam Farmer shares his reaction to RFK’s announcement.

Sam Farmer 

I cringed, as I often do when I hear references Phil to the prevailing medical model narrative around Autism and Neurodivergence. I cringed because this is very dangerous, harmful false rhetoric, at least to those of us who feel as though our Autism is our way of being, core to self-identity, at least in my case, not some epidemic, not some side effect of a vaccine. I dismiss the prevailing narrative of Autism being a disorder, because none of that rings true with who I am, my lived experiences and how I feel about my own Autism profile. So, I cringed, because it runs so contrary to how I feel about Autism. I cringed.

Sam Farmer 

I fear for our community, I don't fear for myself. I fear for our community, because this is a community for which we both self-advocate, Phil, because I know that there are lots and lots of people in the Autism community who are going to be harmed by this rhetoric, whose sense of self will very likely be severely compromised in some cases, because I know us to be, I know us to be a segment of the population, a community where our sensitivities run deep, and this kind of rhetoric does harm. So, I fear far more for my community than for myself. And when I sense that our community is under fire, I lift myself up and I advocate mostly through my writing and through my public speaking, in this case, Phil through our podcasting to set the record straight, and to do so by speaking from lived experience, to try to help our community in the midst of what I would characterize as a war being waged on us. And so, my thinking along these lines is collective for our community as a whole. I know I'll be okay because I've been alive now, 56 years. I've been through enough. I've seen enough. I worked really, really hard to build inner strength and to build a strong sense of self that I've been handling this, I think, pretty well, but that's just me, Phil. I worry for others in our community.

Becca Lory Hector had this to say.

My initial reaction was to laugh honestly. We’ve been in our community. Autism community, for a very long time. I am well read on lots of research about Autism. I've been working and living in this community for almost 15 years now, and it just it's not factual, right? First of all, there is no epidemic, right? That's really the beginning part of my issues with this statement; right is that there is no epidemic. We know that we have gotten the number of identified Autistics has gone up in the last few years, but we also are not counting everybody in those numbers. We're only counting some people. So those numbers aren't even accurate, right? And we know that the reason those numbers went up is because we've gotten better and learn more about Autism, right? And so, of course, the more we learn, the better our diagnostics get, boom, boom, boom, the better our numbers get. And that's how we go. Our numbers used to come only from eight-year-old white boys. Our numbers don't come from that anymore. So that's not an epidemic to me. That's getting better numbers. That's more correct data. To me, that's not an epidemic at all. So, it's laughable to me, and that's a conversation that was had already in the Autism community forever ago, right? Like we're over and past that already. So, I was like, You're behind too on everything. And then I also the idea that that we should add a set deadline, know this answer is also anti science and anti-logic, right? The idea that you give someone an assignment to do research on something and that you should know it by a certain date is also kind of a crazy way to look at the research, right? So, it's filled with lies, is the first part of this whole issue, right? And the other thing is that we kind of already know what causes Autism, and really, it's sex, sex between two people, right? And then a baby comes, and sometimes it's Autistic, and sometimes it's not, right? That's the way that it is. And so, if you're going to try to find a single cause for Autism, we already kind of know it's sex, right? And that sounds like a crazy thing to say, but when it all comes down to it, that's what we're talking about. And so, my initial reaction was to just think about how ludicrous it all was, right? But that was very quickly followed by the knowledge that so many people will hear this and not know that it's a lie. Right. Yeah. And that's when it gets scary. That's when you get past that initial. This is so ridiculous. And then you say to yourself, well, some people aren't going to understand that it's ridiculous.

Michael Fuell is a graduate from Minnesota Independence College & Community, and works at the Great Wolf Lodge in Bloomington, Minnesota.  Michael had this to say.

My initial reaction to the announcement that we that we will know what is causing the Autism epidemic was more comical. I know my mother was more mad. I'd say it's comical, because at the end, regardless of whether they do have their right to their opinion and all that stuff, but some people do not know. They don't know me, or they don't I know. I work with, even at my work, I work with bosses who have to deal with so much situations who are Autistic. I'm Autistic so and then when it said, I couldn’t hold down a job, couldn't pay taxes, couldn't go to the bathroom, I find it funny, because I pay taxes on my own. I have I work over 40 hours a week on my own, and I'm able to fully function as an adult. I may have certain things that because of Autism, but overall, I try not to let it affect me, and then I see people all around who are able to live free and a fully successful life with Autism. My mom was more mad, and she wrote a giant Facebook post. So more comical as well, because I know if you ever upset my mother, she will fight back, so it was little comical to see her reaction towards that.

Philip King-Lowe

At the time of RFK’s announcements, I was hosting a resource table for Today’s Autistic Moment at the 30th Annual Minnesota Autism Conference.  Joyner Emerick was there with me too.

Joyner Emerick 

We were at the Annual Autism Society of Minnesota Conference when this was all breaking on the news, and I think I felt two, two big things. I felt many things, but I think two of them really sort of surfaced the largest and one was almost like, like a bafflement. There was almost like a comedic element, because anyone who has familiarity with Autism research, regardless of their particular ethical or values-based stances or beliefs around Autism, is going to have familiarity with the fact that this is research that has been in process in different ways, shapes or forms, for better or worse, for decades. And so, I think, like the hubris and the idea that one person would say, this is what I'm going to do, and this is the timeframe in which I'm going to do it was just, it was kind of laughable. It to me, like made the entire credibility of anything that was part of this campaign just disperse, not that I was feeling very generous with giving it credibility in the first place, but it made it just so unserious to me. So that was one reaction that I had to it, and then the other big reaction was, I would say, like a mixture of concern and disgust. So, the use of the word epidemic, I think, is really almost to the point where it could fall into what is sometimes referred to as a dog whistle language that has the additional meaning of rallying people around it for a particular purpose that has to do with the communications technique, right, as like propaganda. So, the use of the word epidemic to describe Autism is to me very linked to violence and to eugenics and very purposeful, harmful and dangerous rhetoric. Because we know that Autism is a neurologically innate characteristic of Autistic people, and there's not a way right to separate Autism from an Autistic person. So, it, it really does frame the problem as people, right? You're talking about an epidemic that is the existence of a certain kind of people. And when you really think that through, right, that's a very alarming way to think about any group of people as a scourge, right, as an epidemic, as being a problem by existing, because that leads right into eugenics and genocide and violence. So, any sort of escalation of that kind of language is very alarming and concerning and disgusting to me.

Philip King-Lowe

Jillian Nelson, the Public Policy Director at The Autism Society of Minnesota, was also at the conference.

Jillian Nelson 

I think that was part of what made it seem so surreal to me was that we were at a conference. Because here we are surrounded by hundreds of people that are there to talk about how to enhance the lives of people with Autism. We're there to talk about how to support people with Autism. We're there to talk about understanding Autism. And so, we have the best and the brightest and the most passionate and committed to the Autism community gathered in one place, but then hearing from a place with such power and such control over what happens next. Hearing things that were so far off the mark of what was being discussed by the Autism community in that space, and knowing that this person standing at a podium that has all this control and all this access to resources is so misinformed and so far off the base of where our community is and how our community talks about things and how our community wants our future to look it just felt so surreal, like I remember sitting there thinking, as we're as we were crafting the Autism Society statement, like, How is this even real? How is this even words that we're having to write, like, how is this conversation even happening in 2025?

Jillian Nelson

Yeah. I mean, it's a traditional thing that the CDC numbers, when they come out every couple years. They usually release them in April. Those were right on schedule, and those were exactly what we've seen in the last few years. We've seen the continued like prevalence numbers to go up, and we as a community know why. We don't ever get mad like, oh my God, this is a horrible, horrible epidemic. Oh my God. There are so many Autistic people recognizing when me and people like me and you see these numbers, we know that those numbers reflect on the fact that we are better identifying people that have not been kids that have not been effectively identified in our community in the past. So, you and I see the raise, the rise in prevalence numbers. And like I for one, looking at those numbers this year, I was really excited to see that the ratio of male to female had finally reduced for the first time in decades. And so, for me, it was like for people who know looking at those numbers, we recognize that all that indicates is that we're getting better at understanding Autism. We're getting better at identifying people with Autism. And then so to have someone come in and completely twist the reality of those numbers, and use such hateful speech like epidemic and to set out on a mission to figure out what causes Autism in just a few short months after we had decades and decades of research that they have not determined what causes Autism, because Autism is just normal human diversity at this point, and it just, it's hard. It was hard to be in the space of so many people that know so much and do so good, and then see someone with so much lack of understanding about the community in the world that they've been given control over, like have that much power in that space.

Philip King-Lowe

That same week, another announcement was made by Robert F. Kennedy, Jr., that caused many Autistics like me to feel like we all got a brutal gut punch.  The mood at the conference shifted to fear, with a justifiable concern for our privacy and dignity being violated when RFK announced that they would create an Autism registry.  After many organizations released a document of the dangers as to what an Autism registry would be used for, the word was changed to create an Autism database. Whether they call it a registry or database, it is still unsettling to many Autistics. Especially since they plan to get the data from Medicare and Medicaid records. The overall concern is how the information will be used.  What consequence will there be for Autistic people with a registry or data base?  Joyner Emerick shares their concerns.

Joyner Emerick 

So, I am a parent of two Autistic kids. In addition to being Autistic, myself and my younger child, who's nine years old, is non-speaking and has complex needs for support in the areas of adaptive and communication and is an Autistic child who falls into a very vulnerable category, even within the community of Autistic people. And so, my first thought as a parent of this child who is beloved to me, obviously, he's my child, and I was so afraid. Of course, I was fearful of the implications for the entire Autistic community. However, I was immediately particularly and intensely fearful about the implications for Autistic people like my younger child. And I was overwhelmed with simultaneously a feeling of a need to do whatever I needed to do to protect him, and with such terror, like somatic terror in my body, that I felt almost unable to think or process or act. You know, I think anyone who has the experience of being afraid for their child's immediate well-being in any situation knows that mixture, that cocktail of feelings, and I really lived in that space for several weeks. It was, it was extremely difficult. And I had to seek professional therapeutic help to even start to move out of the space of that terror myself. So, it had a pretty big impact on me. Um, you know, the less immediate emotional response, you know, sort of some of the cognitive response underlying that. You know, I go to my additional role as a school board director for Minneapolis Public Schools, and, you know, a member of the Board of Directors for the Autism Society of Minnesota. And think about, you know, my how my roles interact with communication, like comes as a strategic and engagement mechanism, right? And so, I think about how there was a suggestion to form an Autism registry in Minnesota maybe seven or eight years ago out of our State legislature. And I think at that time when I was involved with shutting that down successfully, I think you know whether the intentions behind it are positive or negative or a mix of both. The impact from a communications standpoint is that when you are talking about a registry or a database of a group of people based on an immutable identity factor, you have to be so disconnected from the people that you are supposed to be serving to not recognize how scary and harmful and violent that language or that proposition is, right?  So, when you consider the diversity of different agencies and organizations that are related to Autism, and how there was

this unifying cause to denounce this registry, right, right? You, you have to think, how out of touch can a person be to be misaligned with that many people right to be misaligned with so many different groups of people who have so many different background experiences, opinions, who often don't agree. Right?

Sam Farmer shares his concern about how a registry or database will affect the privacy of Autistics.

Sam Farmer

Privacy, HIPAA regulations, being violated. Privacy without prior consent, and having heard that because of these privacy issues, that it really, really troubled me to hear that there are individuals in our community who, out of fear for making it into this registry or database, and out of the fears of what might be done with the information gathered, whether it might be weaponized against us. To hear that many in our community are going without very important therapeutic interventions and medications on which they depend, out of fear for what might happen here, and to me, that's heartbreaking that that people in our community would be in a position to deny themselves of these therapeutic interventions and medications, because you and I both know Phil you go without these, many in our community would become dependent upon these interventions for basic well-being that when you go without them, it's scary to imagine what the fallout could be from them.

Sam Farmer 

When your agenda is one of going on a power trip and trying to control and exert power on others, it's considerably easier to pull that off when you're targeting an already marginalized and stigmatized group of people, which to me is morally reprehensible. Because for however many decades now, decades going back, we've already had our share. We've been through enough. Why are you piling it on? If, if anything, you'd be trying to help us ideally in a rightly ordered world, you would, you would be doing what you can to further Autistic acceptance and belonging. Right. For all Neurodivergent individuals, right and you would give you would give us opportunities to share our genuine lived experiences, knowing that if we have an opportunity to do that, that we can cultivate greater understanding of Autism and Neurodivergence, and ideally, with greater understanding would come greater acceptance and belonging, yeah, but you and I both know it's just not so, no, but that would be how it would be in my mind, of a rightly ordered world.

Michael Fuell is concerned about Autistic people becoming just a statistic.

Michael Fuell 

What concerned me the most about the suggested registry or the database is that it could be public. So, I know there are so many people, famous or not, who have it, because we are not just one. I feel like, yes, you may have Autism, but you should. You are even as a statistic is trying to be used towards your own individual purpose to gain, whether it's good or bad. So, my concern is, if it's concerned, we just don't want to be trapped so, because then it could be used for further gains, for worse or better.

Becca Lory Hector shares her thoughts.

Becca Lory Hector

I think it was really twofold. I think it's hard to ignore the fact that if we look at the order of events and the way that things are being handled, it really parallels pre-World War II times, right? And a registry of any kind, right, of any kind, should automatically make everyone get the heebie jeebies, right, and make you think of that. Because the last time we talked about a registry like this, and we weren't talking about a wedding registry, right, was back in World War II, right? And we were looking straight in the face of eugenics and Nazism and all these other isms that were happening, right? And so first, I'm appalled that anything that coming out of our country post-World War II would include the word registry in it, right? Like you're wanting us, then to compare it to when you choose that word, right? There is no effort made to hide you, you know what it was about, right? And then, of course, the concerns are that this information will then be misused, right? It's not that I think Autistics are opposed to having more data about us. That is not what we are opposed to. What we are opposed to is the weaponization of that data. Exactly. And so, a registry, especially when you say registry right, immediately goes, oh, well, you're going to weaponize my data, and you're not going to protect my privacy. Right. Right? And that feels unconstitutional. Yeah. And that feels like it's against our rights. And that feels right all of a sudden, right? And then on top of it, what they're really asking to do is to go through the files of people who are on Medicare and Medicaid, right? And what you're saying is, if you needed help, we're going to make it even harder for you then, right? You already were having a hard time, a hard enough time that you needed to seek out government assistance. We're then going to pick on you a second time and say, now you don't have a choice about being included in this database.

Philip King-Lowe 

See, one of the things that I am really concerned about with this is that this will also get used to take us back to who is mild versus severe. Because, you know, there are those who carry opinions about disabled people, that if you have people who are “high functioning,” who can write or speak or run a business or something like that, they must be fleecing the system, and therefore we're not going to provide disability benefits or anything, anything like that anymore. Okay? While those who are who will be determined to be severe, they will be among the first that they will, they will harm. The other thing is part of the reason why I'm doing this show. What I'm most concerned about with this is what this does to public conversations, for public discourse. And I'm thinking of, and I'm going to use Joyner, for example, I'm thinking of, you know, someone say in Minneapolis, maybe they're talking at a 4th of July picnic. Maybe they're going to be talking even at Pride that could easily happen. Maybe they're talking with their neighbor next door. And you know, Joyner's child just happens to be in their neighborhood, neighborhood, none of that. And so, what I hear it, what I'm worried about is, you know, when people are talking with their neighbors or relatives or anything like that, they're saying, you know, I think this Autism database is a good idea. Now we'll know what's really troubling Joyner's kid down the road. Okay, you know that sort of thing. That's the sort of thing I worry about, because it's not just the stuff that they're doing. It's what becomes acceptable in the public sphere now. The conversations about Autism, Autistic people, they're all still very full of misinformation, and this is only going to make that misinformation more accepted, okay? So, therefore people will start having conversations like, for example, you know, I've always known there's something about Joyner's kid, but I haven't been able to put a, put a, to put a finger on it. You know, maybe this is what's wrong with that kid, and maybe this is why that mother is fleecing the system. You know what I mean? I mean, these are the kinds of conversations that have the potential to find their way into gossip to find their way into you know what I mean?  I'm thinking of, let's say there's an Autistic individual who's washing dishes in a restaurant to make some money, and that individual needs to go to the restroom, so they pass through the restaurant to get to the restroom, and in part of that conversation, they happen to hear someone at a table having a conversation about that. That's one of the people, one of the folks I'm thinking of in this, you know? I mean, I mean, it's frightening that this has happened, and what this is doing. It's starting those conversations, and it's, it's causing chaos in the public discourse about Autism, and for many Autistic people hearing this talk, it's really, it's really frightening.

Jillian Nelson 

I've been diagnosed for 20 years now, yeah, and I remember the conversations when people would find out I was Autistic 20 years ago, versus the conversations now, and those conversations were so hard. They sucker punched you. They you had to process and deal with the entire society's ableism and ignorance about Autism, and you're absolutely right. That's where we're gonna end up back like it's been, it's been a while since I've regularly had to defend my Autism the way I used to. And you're absolutely right. That's where we're headed back to. Where they those of us that don't meet the stereotype of what someone thinks Autism looks like. We're gonna have to defend our Autism, and those who are stereotypically appearing are going to be assumed incompetent and oh, that poor family for having to deal with that. They must just be incredibly, incredibly special people for God to have given them that burden like those are the types of messages and we don't ever think about like people don't think about what it's like to be an Autistic person hearing that message, because people don't humanize us when they're having that conversation about us. We aren't people at that point to them. We're just objects of pity. And that is one of the things that I have fought so hard against and worked so hard to stop because I didn't want the younger generations to go through that. If I, if I had $1.00 for every fight I sat through on a message board where I was told by parents like, oh, well, you're not like my child. And every time my Autism was minimized by someone else who didn't understand my life, I'd have, I'd have a lot of dollars. And the reality is, is like, I think going back to that is probably pretty unavoidable at this point. This is yeah, yeah, where we're going. I think we, as Autistic Adults, can try very hard to do the things and hopefully, like, stop our younger kiddos in our community from having to do that hard labor. Dear God, none of us should have to. We shouldn't be back here. We just shouldn't. This shouldn't be where we are, right? Too many of us fought for too long to get us to where we were, and now one man with a microphone that's not supervised well is undoing decades and decades of work our community has done.

Philip King-Lowe

The Autistic community is represented by many intersections of humanity.  Autistic people can be found in every race and culture.  There is an enormous overlap of Autistic people who are LGBTQIA+.  All Autistic people can have one or multiple disabilities.  Since the current administration began working, every marginalized community has experienced an increase of systemic oppression during the months that are set aside to recognize their unique contributions to society.  When I asked Jillian Nelson about how we can advocate for our intersectional communities during these difficult times, this is what Jillian Nelson said.

Jillian Nelson 

I think what is most important for us to advocate here is that we have to get out of our own lane. The disability community as a whole, when it comes to advocacy, when it comes to political work, we tend to be very, very siloed. We work on stuff that impacts our own disabilities. We work on stuff that impacts our own community, our own state, and we don't often venture outside of the committee rooms of human services or DHS. If we are going to be protecting the intersectionality of the Autism community. We need to not just be speaking out about the Medicaid bills. We need to be talking about the immigration bills. We need to be talking about trans health care. We need to be talking about housing. We need to be talking about every single bill that impacts any marginalized group, because we don't, we don't exist in a bubble. Autism impacts every community, every marginalized group. So, we have, we have Autistic people who are transgender. We have Autistic people who are currently living in fear of Ice showing up. We have Autistic people who are dealing with homelessness. We have Autistic people who are impacted by the Narcan crisis or the Fentanyl crisis, sorry. And if we are going to really stand up for the intersectionality of our community, we have to take our political fight for our community beyond the Health and Human Service communities. Beyond Disability Services, and we have to really be speaking out for any harm that's going to be done to any marginalized group here in America. Because our community belongs to each and every single one of those groups. And hopefully, if we stand with those groups, they'll stand with us like, there's, there's that poem, like, first they came for the socialist and I didn't say anything because I wasn't one. Then they came for the Jews, and I didn't say anything because I wasn't one, and then they came for me, and there was no one left. Like we as marginalized groups, we have to stand together. We have to fight every single fight together. We have to tell them, yeah, it's not okay that you're making an Autism registry. It's also not okay that you're deporting parents in the middle of the workday and their children are coming home alone. We have to stand up and say, it's not okay that we're cutting rights of queer people and trans people in America like we have to stand up for every injustice that's happening right now.

Joyner Emerick added their thoughts.

Joyner Emerick 

So, so here's, here's something about me, because I do my primary work, and that is my policy work, my activism work, my organizing work, my financial work, all of it outside of Autism spaces, right? I do interact a lot with special education, but I'm not often working with other Autistic people. I'm not often working specifically pertaining to Autism, right? So, it's a huge part of who I am. And obviously we've talked about my parenting as well, and I am not in the bubble, so to speak, right? And so, so I think something that I've really come to understand over the last decade or so of my organizing, having been an organizer for, I don't know, 25 plus years is what is justifiable, is not always strategic. Which is to say that strategy has become more important to me than self-righteousness. Strategy has become more important to me than whatever the thing is that is happening in the moment. And I think that one of the most amazing traits that many Autistic people experience is that sense of that deep sense of justice and fairness, right? What we tend to be incredibly convicted people. We tend to be more willing to put ourselves out there, or put ourselves on the line, or take on personal risk for what we believe or know to be right. And I think that that's fantastic, and I use it in meetings all the time. I'm often the person out on the limb, like, I don't care what you think of me. I said, what I said, right? But I think when we start to get to something that both have a diffuse goal, right? Like surviving fascist authoritarianism is, is a diffuse goal, right? And when it's very long game, we need to think further out, and that sometimes means not acting in the moment and doing perspective taking instead. And I struggle with that as an Autistic person, and it's not because I'm not empathetic or I don't care. I care very deeply about the experiences of different folks. It's just that my brain is wired to have a quicker path to acting on injustice, as opposed to stopping, pausing, listening, finding out more, because I just want to stop injustice where I see it, you know, and what I experience is that with a community as diverse as the Autism community, or more broadly, the disability community right? Which can impact any person of any background. We might not be listening enough to each other preemptively to form our strategy. We might not be listening enough to each other as Autistic people because we are so convicted about what we know and understand to be right and want to act on behalf of our convictions so rigorously, even at personal risk, which is a strength that sometimes we are not pausing long enough to listen to a diversity of perspectives and experiences that might be different from our own right, and then being committed to forming more coalition based strategies across different identities within the Autistic community, within the broader disability community. I do a lot of bridge building work with parents and caregivers, and I do that understanding that parents and caregivers have both been some of our best allies historically and some of our, you know, greatest harm doers historically, right? There's it's messy, and that still today, the role of parents and caregivers is very quickly co-opted by bad actors like RFK in order to cause harm, right? That's a reality.

Michael Fuell spoke about some of the advocacy work he has been doing.

Michael Fuell 

I would say what's most needed is just find a community that can support you, even if it's a couple people, like I went to as a graduate of MICC. Not gonna lie, before my first year of going to school, I lived alone at home for a year, doing nothing so with the and then I found the MICC community, which then helped me find a job. Now I do over one of their most which allowed me to then develop necessary skills to nurtured and fine-tuned my work ethic to a point where now I am one of the most reliable workers at the company, where I find out, just find a being able to find a community where I've seen people and I'm like, if I went, if I didn't go to this school and I went to this work, this would have never been tolerated at the school, which was the skills I'm now able to clean and make stuff work. I have a roommate who was able to pay rent successfully, because of the community that I found, so even if it's just general support or lobbying, lobbying has helped out. Then if you find the support of the community, then it will help you be able to actually go out, try to have a work life balance and then live a successful life.

Becca Lory Hector offers her thoughts on the real challenges of advocacy.

Becca Lory Hector

Well, it's a rough one, right? Because the Autism community, the disability community, right? Whereas diverse as it comes, right? Certainly genetics, you know, and all of that plays a role and whatnot. We come in all shapes and sizes. So, when you look at all of the other intersectionality identities, you know, all of the other identity groups out there, you're always going to find someone who is and also Autistic, right? And so, our group is inherently very diverse, and so it's hard to not be impacted by that. And so, what I think is that we first like for in terms of, I want us to think like in terms of personal advocacy and then kind of external advocacy, I guess, right? Because there's stuff that you should be doing for yourself, which is more like self-care items, in order to keep yourself strong throughout this process, mentally well, physically well, right throughout this process. Because if we are not physically and mentally well, then they win, right? That's the idea. So, we start with that concept. So, there's some self-care stuff that you can be doing, and then when you feel strong enough to add your voice to the bigger voice from our community, there's things you can do in that space. So, I think it's about understanding your capacity, right? And then really figuring out what are the things that I am within that capacity able to do and want to do in order to support this. And I would say, start with self, right? And then when you have that energy, go outward to community. So, for example, when you're taking care of yourself, some things you want to be thinking about are limiting your exposure to some of the media and the rhetoric around this conversation. Lord knows that people are making things up with AI and making up photos, making up everything, and that only a certain percentage of the stuff that we're hearing and seeing out there on social media and even on many news outlets, right is made up. It's not even factual. It's invented right to support certain sides of the argument. So, what we need to do is make sure we're limiting our exposure to that so that we can tell the difference between truth and fake, right, and that we can tell the difference between what's real and important and what is not and what is just being made. To get you all up in arms, right? We want to connect with our community. So, we want to connect with people that are affirming. No matter your identity. So, if you don't lead with your Autistic identity and you lead with your race or your gender identity, connect with those communities and connect with those support networks in there. Don't be alone. Don't let them isolate you, right? That is the game plan. Focus on joyful and validating content as well as your lived experience. So, hang out with people who share your lived experience, right? So, you don't feel isolated, right? But also, at the same time, focus on joyful and validating content.

Now listen to Sam Farmer’s conversation with me.

Sam Farmer

Well, communication is key, but the challenge, in my view, is getting other people to listen, and not just to listen, but take what they hear from us to heart, enough so that they can take a stand and maybe change their line of thinking. When I speak and when I write, I don't just speak and write just to casually talk to people and, okay, we're done talking bye, bye sort of thing. I speak and I write with the aim of moving hearts and minds. And it's through social media posts. It's through whenever the opportunity presents itself. Everyday conversations we might have with friends, with loved ones. It might be a little risky to pursue this course of action at the workplace, if you feel as though where you're working isn't as inclusive as you like it to be, but to the extent that you feel safe doing it, to be talking to people and sharing. I'm very fortunate to be part of a workplace where I've been able to share not all, but some of my writing with my fellow colleagues without adverse consequence. It's communicating, through writing, through social media, through speaking, either through formal public speaking engagements or everyday conversations, that I believe are key to our efforts at flipping the script on all of this and doing our part to try to make things better for our community. It’s easier said than done. Yeah, absolutely get people to listen, and not just to listen, but take to heart what they’re listening to.

Philip King-Lowe

I want to say thank you to Becca Lory Hector. Jillian Nelson. Joyner Emerick. Michael Fuell. And Sam Farmer for sharing their reactions, concerns and recommendations for advocacy.  Each Autistic person is responding to what is happening uniquely. 

One of the many reasons I wanted to bring this Special Edition to you is because we know that there are conversations taking place everywhere.  The announcements by RFK and other organizations who are supporting his decisions are impacting the public discourse about Autism and Autistic people with misinformation that is further stigmatizing the communities represented among Autistic individuals.  It is one thing to have conversations about Autism and Autistic individuals as if they are incompetent or too sick to understand what is happening to them. The truth is, Autistic people are individuals with their own thoughts, feelings, challenges and how they communicate their point of view.  Now that you have heard what these Autistic individuals have had to say, we want you to add the voices and concerns of Autistic people into the conversations you are having at work, in your local communities, in your social media conversations, blogs and public debates.  Do not just talk about Autistic people, listen to Autistics tell you what they have to say.

My name is Philip King-Lowe.  I have been the owner, producer and host of Today’s Autistic Moment for the past four and a half years.

I have interviewed so many amazing Autistic individuals and professionals who serve the Autism community.  The news of what RFK said in April moved me to begin working on this Special Edition: What We Have to Say.  In addition to the five speakers many of my amazing sponsors came forward to offer their financial support to bring this Special Edition to you.   Those sponsors are The Autism Society of Minnesota. Minnesota Independence College & Community. Best Care. Looking Forward Life Coaching. The Autism Mentorship Program. The Actually Autistic Coach Collective. ITI Assistive Technologies. Thank you so much to all of my amazing sponsors.  

Beginning on August 1st, for just $12.00 a month or $144.00 a year, you will get access to the complete interviews with each one of the speakers for the Special Edition and all future episodes that you can hear only on our website todaysautisticmoment.com.  That means that you will have exclusive admission to hear the complete interview conversations for all guests, without interruptions, commercials, host only segments or music.  The transcripts and one that is accessible for dyslexics for each interview will be included with your subscription.  The upcoming shows in August that includes Carole Jean-Whittington cohosting with me as we talk to Michelle Markman on August 10th about Self-Care: Boundaries & Holistic Wellness. On August 24th, Carole Jean-Whittington and I will talk with Lisa Morgan about Strength Based Self-Care in a Medical Deficit Culture.  These shows will have their own ad free interviews with your subscription.

If you are angry and want to do something about the plans of Robert F. Kennedy, Jr, please stay with us as A.J. Locashio joins me to tell you about Autistic Advocates United: An Autistic & Allies Grassroots Movement.

Philip King-Lowe 

So, AJ, welcome. I'm so glad you're here, especially after we've been hearing these remarks by my Autistic guests who have spoken about their reactions, concerns and thoughts about advocacy. So, in response to everything that's happened, a group of Autistics and us gathered together, and we created Autistic Advocates United: An Autistic and Allies Grassroots Movement is our opportunity as an organization, movement supporting each other in advocacy.

AJ Locashio 

Yes, thank you so much for having me. I'm thrilled to be working with you and Today's Autistic Moment. Autistic Advocates United was formed in response to a critical need for Autistic voices to be heard and respected in discussions about our lives and our futures. Together, we represent a unified community standing up for our Autistic autonomy, and we will be challenging harmful rhetoric that seeks to pathologize our identities.

Philip King-Lowe  

This was created because there is an urgent need to respond and organize Autistics and our allies around this. We want the Autistic community and our allies to have a response with a unified voice. Many of us identify as Autistics with a capital A recognizing it is core to our identity and culture. The desire to "cure Autism" stems from the misunderstanding and evaluation of our worth.

AJ Locashio 

Absolutely. And we heard people talking about that. The folks that you had on definitely talked about how our worth has been devalued in the past, and that we're not going to let that happen again.

Philip King-Lowe 

Exactly, exactly. So, here's what's going on everyone. We are currently working on a survey to get to know what are the major concerns from about Autistics and our allies regarding Autistic advocacy in these really challenging times. So, this survey is available on autisticadvocates.org/community-survey/, and we want your input here. We want you to tell us what are your concerns and how you know, give us some thoughts as to what you feel we need to do together. We want to emphasize that we recognize that there are diverse ways of advocating and so to lead this forward, we have created some working groups, and we're going to tell you about those working groups right now. Let's do it, AJ.

AJ Locashio 

Yeah, absolutely. You know. The first thing that we know is that it is crucial to acknowledge and include diverse folks throughout our organization to make sure that all voices in the community are heard. So, we have prioritized diversity and inclusion of varying disabilities and identities through these working groups. So, what we started with was, of course, we need to have a Leadership Team. Those are the folks who are going to be, you know, making the, ultimately, making decisions as we are listening to the community and making sure that those community voices are really, truly heard. You know, it's not a group of leaders who are making decisions without the community's voices. We are gathering those materials and listening to the community and then making sure that those voices are heard. And so that's what my big, my big job in this is to be represent the Communications Team within that leadership team, and that's where you know we're looking at the specific messaging within the community, what the community wants to wants to say and wants to learn. We're doing community outreach and also making sure that we are providing accessible content to the public.

Philip King-Lowe 

Yeah, and I want to say that I am proud to be the Movement Leader who chairs meetings and conducts them and invites people's comments, and we also take polls. To see you know if the if the group approves or not of what we're doing, and we've had a lot of input. We know that sometimes we know that organizing Autistics to use their voices means getting over ourselves a little bit and letting them have their voice and their way. So, we are making it possible for you to do that. So, we also have a Communications Lead Team. We have the Survey and Advocacy Strategy lead here. The survey is being done by that working group, and from it, we want to develop some strategies for our advocacy. This is where the input of the Autistic community is most important, because we know that everybody leads in various ways. Some read, some lead by doing self-care, some lead by doing active work, like making phone calls, writing emails or filling out surveys or and or, you know, but actually organizing some activities, whatever they may be. And so, we want to be sure that we are including ways that are comfortable for everybody. And what we want you to know is that however you participate in the advocacy is perfectly fine. We know that not every advocacy style works for everyone, and that's we want to make room for that. So, you know this Survey and Advocacy Strategy group is collecting data and doing some advocacy planning and doing some impact measurement to be sure that we're actually having an impact.

AJ Locashio 

So, as I said before, diversity and inclusion is a number one priority during all of this. So, we will be doing targeted outreach to underrepresented communities, making sure that our advocacy is intersectional. So, we do have a Diversity and Inclusion Team. Another team that we have is the Finance Working Group, and that is making sure that our work is sustainable as we continue going in the future. We will be doing grant writing. In fact, we already have submitted some grants for that, and we will be working with folks. That group will be working with folks who want to be active within fundraising and that sort of thing.

Philip King-Lowe 

And we also have my good friends, Becca Lory Hector and Carol Jean-Whittington. They are the Self-Care Advisory Team. They write weekly self-care reminders, and they send them to everybody in who participates in the movement, reminding us to take our breaks and do the pausing, and also some things, some strategies that can help with self-care that is of the utmost important. The other one that I want to mention here is I, we call it a Hear Me Out and Accessibility Coordination. You know, we know that there's a lot of people out there right now who are just not hearing us clearly. And sometimes we get part of a work of a group, and we speak up and nobody listens. Well, we want to provide you an opportunity to become active by telling us what's working and what's not working for you. And also, you know, if there's an area where we are not being accessible for your needs, we want to hear about that. And we will the Hear Me Out, and Accessibility Coordination Working Group is going to receive those, and we are going to work as diligently as possible to address as many of those needs as we can. We are looking for additional leadership support. We have training and capacity building for emerging community leaders. So, we are indefinitely going to be looking at that. Absolutely. Talk about the advocacy specific content development here.

AJ Locashio

Okay, yeah. So, one of the big things that we are doing here is we want to support folks in their advocacy. Like you said before, advocacy looks different for each person, and we want to make sure that folks in the community have the supports that they need, so that they're not burning out in advocacy. We all know that advocacy, even just advocating for ourselves, can require quite a bit of energy, and that if we're not careful, it can become not sustainable. So, in order to create sustainable advocacy strategies and make sure that we are making a true impact in the public that that really supports the fulfillment of individuals in the Autistic community. We are creating training materials that are developed by Autistics. These will include advocacy toolkits and various resources, again, created by and for Autistics and our allies. Also, this is what I'm going to let you talk about. Autism Awareness month, week, day, all of those can feel really draining on a lot of us. So maybe there's some other way that we can do this. What do you think?

Philip King-Lowe  

Absolutely, you know, as I've been thinking about this past year, you know, these comments about Autism registry and epidemic and all this, this came during April, and there have been some concerns for a long time that April, whether you call it Autism Awareness or Acceptance Month, seems to be a month of endless arguments about whether Autism is indeed a disorder or it's not a disorder. We have money being spent that is not going directly to the Autism community. We have all sorts of things working against us. And then these announcements came during April, and it's all very harmful. And for many of us, leaves us, leaves our post-traumatic stress disorder in high alert. And, you know, adds more onto it. So, I am proposing here that we work to change that month, not change it, but actually add a category. I want to be getting begin, calling it Autistic Advocacy Month. And this is an opportunity for Autistics and our allies to be proactive. Create proactive strategies toward advocacy, rather than the arguments about Autism and awareness and what it means. We are going to, you know, through our survey and strategy teams, we're going to be coming up with some things that we can do activities, and you know, like, we don't know exactly what that's going to be just yet, but rather than being passive and just taking every comment that comes from, Lord only knows where. We want to actually have the opportunity to do some of our advocacy building and do some activities that are going to get attention. You know, it's one thing to do advocacy work that is just advocacy as informing. We want to do some things that's going to impact, educate, inform and invites active engagement in the work that actually results in systemic change. That makes the lives of Autistic and our intersectional community safe, secure and fulfilling. We're going to need everybody's input on that, and if you have ideas, by all means, get in touch with us. I also want to just say that this is a teamwork effort by Today's Autistic Moment and Umbrella. We are working together to bring this to you to raise the funding and get our volunteers. But that does not mean that we cannot include others. So please, if this is something you're interested in, please get in touch with us, and now AJ is going to tell you a little bit more about how we can do that.

AJ Locashio  

Absolutely, our website is autisticadvocates.org and on our website right now, you can see our public statement that we have made, that we came up with together to help people understand the purpose of this movement. Also, on there, folks can see the link for the community survey, and there is also a donate page where people who their advocacy looks like sharing resources. And one of those resources that we need is money. And so, folks can go on and they can donate, and that direct link is autisticadvocates.org/donate. All donations, because this is a partnership with Today's Autistic Moment and Umbrella ND, all donations are tax deductible. Any donation that is made through this link go directly to Autistic Advocates United. None of those donations are used in any other work that Umbrella ND is doing. So, they all stay within Autistic Advocates United and in the Autistic community. I do want to say that Autistic Advocates United, we represent a community that we no longer accept being spoken about without being spoken to. Our voices are strong. Our message is clear. Our commitment to Autistic autonomy is unwavering. We exist, we matter, and we will continue to advocate for a world that recognizes our full humanity and inherent worth.

Philip King-Lowe

So, you know, we know that a lot of the information you've heard from our guests is very distressing, and we concur. It has been very stressful for us together. And you know, Today's Autistic Moment has been focused on our multidimensional characteristics and leadership through that, and this is one of the ways that we're achieving that together. So please do get involved and go to autisticadvocates.org and donate and read and please, by all means, take part in the survey. Thank you, AJ, for being here, and we hope to work with you again, of course, and of course we will.

AJ Locashio

Absolutely thank you.

Transcribed by https://otter.ai

All Guests met with me on Zoom to record the interviews.  The interview transcripts were provided by Otter. The podcast was prepared and edited on WavePad Masters Edition by NCH Software.  The Podcast was published on Spotify for Podcasters.  The music you heard is licensed to Today’s Autistic Moment by premiumbeat.com.