Computer-generated Transcript of Conversation
Accessibility Disclaimer: Below is a computer generated transcript of our conversation. Please note that there are likely very many errors––including the spelling of my name––and may not make sense, especially when taken out of context.
00:00:01:17 – 00:00:30:14 Speaker 1 Hi, I’m Ray. Growing up, I felt like the education system wasn’t built for people like me to succeed as a student with undiagnosed neurodivergent learning disabilities and anxiety, I struggled to learn in the ways my peers learned. In the decades following. I became an educator and taught in various classrooms around the world. I taught in public schools, private universities, large government funded programs, and even small academies.
00:00:30:16 – 00:01:05:16 Speaker 1 I designed curriculum, measured student success, and even assessed teacher efficacy. Then, while teaching a group of English language learners in South Korea who, like me, hadn’t received adequate attention in school or at home, I realized I was using the same methodology as the ones that had failed me. Homeroom is my attempt to remedy this on an international scale to speak with as many people from around the world about their own education systems, to rethink what schools can be, what it should be.
00:01:05:18 – 00:01:41:02 Speaker 1 When we design systems and metrics which are inclusive of more diverse types of learners and thinkers with varying levels of family involvement and access to resources. In this episode, I speak with Alondra, a social worker, author, consultant and mom, about her earliest memories of feeling different from her peers. We talk about her journey towards receiving an autism diagnosis, her expert opinions on what autism is and isn’t, as well as her thoughts on both the challenges, drawbacks and benefits of self-diagnosis.
00:01:41:04 – 00:01:55:06 Speaker 1 She also entertains a few of my eccentric questions and backs up her responses with the most current research. Here is our edited conversation.
00:01:55:08 – 00:02:23:11 Speaker 2 I have all kinds of very early memories of of recognizing that I was different then. You know, a lot of people that I knew, but I did not know exactly why. And so over time, you know, I had sort of an evolution of understanding my own experience and, you know, applying what I knew at the time to it.
00:02:23:13 – 00:02:56:09 Speaker 2 So, you know, very early and I don’t want to do like a gene engram for you, but I have you know, it’s like a split family. So there’s my mom’s side and my dad’s side, and they separated when I was very, very young. So there’s always been quite a broad difference between the two. So my mom and who had custody of me.
00:02:56:11 – 00:03:57:00 Speaker 2 So I have I have some few memories of when my parents were together and even then feeling like we were all different from my dad’s family. But when they separated, it was even more apparent. So my mom has had, you know, mental health issues her whole life, very chaotic sort of energy and lifestyle. And her mom at all of my life until recently, probably like the last few years, I thought she had schizophrenia because that’s what she was diagnosed with, which, of course, now having all the knowledge that I have about autism, that was the only option for a diagnosis for her.
00:03:57:02 – 00:04:36:15 Speaker 2 But I having that background was already very different. So I was kind of on high alert for, you know, am I going to be like that? Because my grandmother did have psychosis, She did have hallucinations and delusions that would come and go throughout her life. So I was always honestly kind of scared that that would happen because I saw how that manifested in her and how difficult it was for her.
00:04:36:17 – 00:05:08:01 Speaker 2 So that was always in the back of my mind. That never happened. But that was sort of the the place I started from. It’s like, okay, this is my lineage of difference and my dad’s family was not very accepting of my mother, in part because of her mother, because they, of course, met and they’re like, Who is this lady?
00:05:08:03 – 00:05:39:05 Speaker 2 She doesn’t seem like she’s all right. And how does that extend to our family now where we’re all in this together? And my mom loves to tell the story of announcing to my grandparents, my dad’s parents, that they were going to get married. So the first response was my grandfather saying there will be no children from this marriage.
00:05:39:07 – 00:06:13:23 Speaker 2 And then I. I showed up. So even before school, I was always aware that I was under scrutiny from my grandparents and my aunts and uncles. And my dad’s side is thick. They were watching me to to see if I was going to be a problem. And, you know, there were there were mixed sort of issues. I was a pretty good kid.
00:06:13:23 – 00:06:49:09 Speaker 2 I was a studious kid, even as a young kid. But I had noticeable traits. And I have memories of being in the living room of my grandparents house with my aunts and uncles and my grandparents, kind of lecturing my dad and saying there’s something wrong with her and you need to do something about it. And my dad being very protective and angry and he shut them down.
00:06:49:12 – 00:07:28:18 Speaker 2 So that happened quite a few times, but it got shorter and shorter each time. And eventually they stopped because he would not allow them to treat me that way. And I really to this day still think about that and appreciate that advocacy from my dad, who didn’t know anything. And in his mind he didn’t see anything that was off about me because I wasn’t that different than he was by the time I got to school.
00:07:28:19 – 00:08:05:05 Speaker 2 I think, like the overwhelming experience that I had was what I would call no social confusion. I just did not understand most of what was happening socially. I would have the number one phrase that I remember hearing was, Why are you so weird? But I remember being in second grade and, you know, they had us line up. But boys and girls, I have no idea why they did that.
00:08:05:07 – 00:08:27:19 Speaker 2 But so girls and one line boys in the other line. And I was just standing there, I don’t know if I was fidgeting or stimming, and it was just not even aware. I wasn’t even aware of it. But yeah, somebody stopped me and turned around and like, put their hand on my hands and asked me, Why are you so weird?
00:08:27:21 – 00:09:07:02 Speaker 2 And I it must have been that I was stimming. And it was I wasn’t even aware of that. So just many experiences like that and always feeling like there was a secret code being passed between people, that they understood things that I didn’t understand. And I have had the experience, even in adulthood, of just asking somebody and being like, I know that there’s something happening here and I don’t know what it is, Can you just call me in?
00:09:07:04 – 00:09:29:06 Speaker 2 But like, that’s against the rules that they are not going to tell you. I don’t know if it’s discomfort for them because they think I should just know this terribly uncomfortable thing and I don’t. Yeah. Yeah.
00:09:29:08 – 00:10:03:14 Speaker 1 So I have a question about that. Maybe a little anecdote. So, so I was born and raised in the United States, but Korean was my first language because that was what my caretakers spoke in the house and going to school. I knew that there was a very big culture shift between what was happening and what was normal at school and what was happening, what was normal at home.
00:10:03:16 – 00:10:48:16 Speaker 1 And, you know, over the years, I always thought, okay, it’s just because, you know, my parents are Korean, my or my mother’s Korean and my grandparents are Korean. And Korean was my first language. And that’s why I feel so odd. But I, like recently went back through my official academic records and I was like reading comments and notations that my teachers left and, you know, and then also now having all these conversations with people who were also Korean American and realizing I did not have the same experience as these neurotypical Korean Americans.
00:10:48:18 – 00:11:26:03 Speaker 1 And so, you know, that was like one thread of trying to figure out, okay, what is wrong? And I can really relate to what you’re talking about here, about that social confusion. Like, you know, there was some sort of key to unlocking what was happening, but no one like you couldn’t there was no key for you. And so when I speak with a lot of people who are in this like Bermuda Triangle of trying to figure out, like, are we autistic, do we have PTSD, Do we have ADHD?
00:11:26:03 – 00:11:56:19 Speaker 1 Like, you know, we don’t know. And something that I have noticed is that we have a tendency to see things that other people don’t or like when we talk about neurotypical and they just kind of assume that we are supposed to know how to act. It’s almost like there is a standard way of acting. And what I’m tracing it back to is sort of like the status quo.
00:11:56:21 – 00:12:50:13 Speaker 1 Like, people understand the status quo and then people like me or us, we don’t assume anything, right? Like there’s we have to question things or we have to do things differently, or we do things in a way that makes sense to us. It doesn’t have to go with the beat of everybody else. And so my question to you is really, what are some of the things that you think is are the reasons why some people are so easy understanding the status quo and some people just don’t?
00:12:50:15 – 00:13:28:22 Speaker 2 Well, sometimes when I ask questions like we are asking, I get answers like, if I knew that answer, I would win a Nobel Prize. You. But really and truly, what I think it boils down to is connectivity of our brains is I’m reading a lot about neuroscience right now, and I am not a neuroscientist, so I love it when there’s lay abstracts in the studies.
00:13:29:00 – 00:13:45:03 Speaker 2 Thank you for those people who do that, because it is very helpful. I, I always my line forever is I’m a doctor, but not that kind. Not that can be either. You know.
00:13:45:05 – 00:14:23:05 Speaker 2 And I was reading a study. I, I don’t want to say what year it was, because I’ll tell you and I will be wrong. But within the last five years, there’s this project full of autistic people’s MRI’s that it’s it’s an open source. So all these different studies have been able to access all like thousands of functional MRI and regular MRI.
00:14:23:07 – 00:14:54:22 Speaker 2 And it’s so valuable. All of these different studies are coming out and looking at all these different things. And one of the things that gets repeated in all kinds of different iterations is, you know, what’s different? What’s different about autistic people’s brains and what’s very interesting is all the studies show different things depending on what they’ve looked at and what they’re criteria are.
00:14:55:00 – 00:15:32:14 Speaker 2 They come back with different stuff. And one study that I saw I thought had a really perfect description, and that is that autistic brains are idiosyncratic, that we not only are we different from neurotypicals, but we’re different from each other, too. So there’s big categories of similarity, but there’s so much heterogeneity within the community. It it’s hard to quantify.
00:15:32:16 – 00:16:06:17 Speaker 2 So what I have come to think of in my social worker, not neuroscientist brain, is that there’s areas of hyper connectivity and areas of under connectivity, and those are in comparison to a neurotypical brain. So when I say hyper connected, more than a neurotypical brain under connected is compared to a normal typical brain. And that conceptually is how it all makes sense to me.
00:16:06:19 – 00:17:01:02 Speaker 2 So there are, you know, each region of our brain has all these different functions and how we connect, how our brains are connected kind of determines our experience. So lots of different parts of the brain are involved in sensory experiences, you know, different senses and different parts. And I think that that’s something that’s really clear for us to understand, is, you know, when our brains are hyper connected to get all this information, this richness of sensory information that makes sense as to why we might have sensory overwhelm, why we might experi insight things much bigger and louder than other people do.
00:17:01:04 – 00:17:36:20 Speaker 2 And, you know, the converse I know I, I think most people and I don’t want to categorize, but I think most people have like mixed sensory profile where some senses are super heightened and others aren’t so strong. So like I know for myself, my introspection, my sense of what’s going on inside isn’t that great? So like I had stomach pain in the middle of my stomach for a long time and it would just come and go.
00:17:36:20 – 00:17:56:10 Speaker 2 And, you know, I talk to my doctor about it and, you know, it really hurts. And they’re like, You’re sure it’s not over here in the right? Like, No, no, it’s right dead center, Dead center. And I ended up getting, you know, an ultrasound and it was gallstones all the way over on the right hand side, not in the middle where I was feeling it.
00:17:56:12 – 00:18:26:05 Speaker 2 And, you know, the the radiologist or sonographer, sonographer I don’t know the person who performed it. They’re pushing on my gallbladder and they’re like, Doesn’t that hurt? I think well, I mean, they feel it. But no, she’s like, You have these huge gallstones in there. I can’t believe you’re not screaming right now. But, you know, on my skin, if I get an abrasion on my skin, I feel like my reaction is much bigger than most people’s.
00:18:26:07 – 00:19:01:17 Speaker 2 So my hearing is ridiculously sensitive and I hear things that no one knows exist. I see my nose, too. I smell things. No one can smell them. So, yeah, I have like this funny story from when I was first dating my husband a hundred years ago that his, like kind of like man house. There was a bunch of men who lived together in a big house, and I was like, I smelled gas.
00:19:01:17 – 00:19:31:11 Speaker 2 I smelled natural gas, and it’s coming from the garage and nobody else could smell it. And I’m like, No, no, no. There’s natural gas. You have to call a gas company. And I told them so much that someone finally did. And there was there was a gas leak in the garage and the gas company guy was like, it’s not a huge gas leak, but it’s definitely dangerous and you need to replace the water heater.
00:19:31:13 – 00:19:47:06 Speaker 2 And that’s like a vindication. Yes, I told you. But so that’s just a part of my experience. And if you’re familiar with the Greek myth of Cassandra.
00:19:47:08 – 00:19:54:21 Speaker 1 my gosh, Cassandra speaks, written by Elizabeth Lesser. I’m sorry. Go ahead.
00:19:54:23 – 00:20:27:03 Speaker 2 I have not read that. But I was thinking about I relate very much with the story of Cassandra, who, you know, kind of was cursed to have all this foreknowledge and have no one believe her. And that is just so much of my experience is feeling like I am really, really sure I know something, but nobody believes me or they don’t think it’s important until it is.
00:20:27:05 – 00:21:06:00 Speaker 2 And that experience is just something that drives me crazy. It really does. It makes me feel like I how do I make people listen? How do I make people know that this is important? Because to a lot of neurotypical people, the things that are important to me aren’t important. So that’s the frustration, that I have never gotten over even since childhood.
00:21:06:02 – 00:21:35:04 Speaker 1 Yeah, 100%. And, you know, I think I can really relate to a lot of the things that you said here, particularly almost very specifically about, you know, abdominal pain and, you know, the poor interception and like heightened sense of hearing and and scent and yeah, so my mother and I have always been very highly sensitive to these things.
00:21:35:06 – 00:22:06:18 Speaker 1 And like so hypersensitive. And so it’s almost like, okay, what is the source of this, though? You know, and I it kind of okay, now I’m like, which route should I go down first? But so I don’t forget it. One is like, really like I sometimes think about autism and I wonder, like, is it when the source of trauma happened?
00:22:06:18 – 00:22:41:23 Speaker 1 Right? Like, is it like something happened in the like when you were in utero or, you know, when you were even like, you know, in your grandmother’s ovaries? Right. Or like, like is that like when the source of trauma has to have happened for it to be considered autism or, you know, like, could it have happened like when you were, you know, one year old and you weren’t getting the affection or attention that you needed or you were minimized.
00:22:41:23 – 00:23:04:17 Speaker 1 And that’s when the trauma happened. And then, you know, two years later, like the symptoms started to happen. And is that also just as valid of a, you know, entry point into being considered autistic? And so I’m just wondering, like for you, does that resonate at all? And if it’s like a time thing or. Yeah.
00:23:04:19 – 00:23:45:08 Speaker 2 I definitely think about what you were just saying about being an ovary, being an egg and an ovary. It’s I, I conceptualize that all the time that, you know, when my grandmother was pregnant with my mother, that I was an egg in her little tiny baby ovary. And, you know, what did my grandmother go through? In my specific case, I am I have, you know, this direct lineage that I can see that this is there from the very beginning.
00:23:45:10 – 00:24:23:03 Speaker 2 What we know about, you know, like causation is similar to what we know about how our brains are wired is that there’s a lot of different ways to get to the same place. So you have genes that are inherited and that’s, you know, the most kind of direct and what people think of. And I think that within that artistic community, the assumption is that that’s that’s everything that it’s always read it inherited from family.
00:24:23:03 – 00:24:53:19 Speaker 2 But the science doesn’t say that yet. The the science says that there are other ways to get there and we don’t know all the answers. So there are tons of genes involved. And, you know, some of those are straight, you know, passed down. Some of them are what they call de novo mutations, which is, you know, your parent might have some of the genes, but not enough to have a presentation.
00:24:53:21 – 00:25:29:08 Speaker 2 And then you get some genes that are mutated. And and that’s enough to make the changes that we call autism. But then there’s this other category of here to unknown that we’re just calling environmental factors. And some of them can be those de novo, you know, just random. And there’s a lot of effort right now to try and figure out what the environmental causes are and the things that they come up with.
00:25:29:10 – 00:26:13:07 Speaker 2 Sometimes they are disproven pretty quickly like there was for a while. It was antidepressants, you know, people that took anti-depressants while they were pregnant. Are they they made their kids autistic that way. And then like, no, no, no, that that’s not right. And I find a lot of interest in those kinds of studies because one of the reasons we need a lot more autistic researchers is because they never ask the question, is that mom, autistic and not diagnosed and that’s why she’s on antidepressants, you know, not your it’s a chicken and egg issue there.
00:26:13:09 – 00:26:53:15 Speaker 2 But yeah, we have this, you know, one of the yet to be confirmed or disproven is air pollution. They say that air pollution is possibly a cause. I don’t know how I feel about that. I tend to be of the opinion that doesn’t matter so much how people become autistic because they’re not going way. Even if some of those cases are environmental.
00:26:53:17 – 00:27:20:01 Speaker 2 Okay, yeah, we should do something about air pollution for all the reasons. You know, the job here is not eradicate, you know, autism. So I think it’s when those conversations come up, I always want to know, like, what’s the end game? If the other person, if they’re trying to figure out how we cure autism, then this is not the conversation.
00:27:20:07 – 00:27:24:13 Speaker 2 You know, we don’t need to talk about air pollution in that conversation.
00:27:24:15 – 00:27:37:16 Speaker 1 Exactly. And so this kind of brings me to another really big question that I wanted to discuss with you is like, what is the purpose of a diagnosis?
00:27:37:18 – 00:28:15:13 Speaker 2 I think that’s a really good question, and I think that maybe it’s controversial to say that not everyone wants a diagnosis or should want a diagnosis. And I think it depends. And in I know that you or your podcast is, you know, international so it’s it may not be the same for every country, but one thing someone was asking the other day like, why wouldn’t someone want to get diagnosed?
00:28:15:15 – 00:28:59:21 Speaker 2 Why wouldn’t you? And there are reasons in in most people’s different situations. So for one would be immigration. If you are looking to immigrate to another country, it can be a barrier to have a diagnosis of a lifelong condition. And there are lots of cases of countries that are pretty progressive, that have shut people out like Australia, Britain have shut people out and made them unable to immigrate because of either their own diagnosis or their children.
00:28:59:23 – 00:29:32:01 Speaker 2 So that’s something if you think that you might ever want to go to another country, you kind of have to think ahead. Is that going to be a barrier? Other things kind of also legal in the realm of of legality is if you’re a parent and you have children, obviously, if you’re a parent, you have children, and then maybe if you go through divorce, it can be an issue with custody.
00:29:32:03 – 00:30:00:03 Speaker 2 If you have a contentious custody battle, the other person can say, well, they’re autistic, they’re not capable, and that might not be true and it probably isn’t true. But it does mean that now you’re going to have to prove that and there’s going to be, you know, elected by the court people to come and interview you. And that’s just a lot of stress that nobody needs.
00:30:00:05 – 00:30:34:23 Speaker 2 And I have heard people say that they have been through that. I don’t know anyone personally. So I’m just going to say that’s a possibility. What are other reasons why you might consider so the answer to the question of, you know, what’s a diagnosis for a diagnosis? Define since, you know, we’re in a medical model of of disability.
00:30:35:01 – 00:31:11:17 Speaker 2 So if we get if we step outside the medical model of disability, it’s a completely different conversation. So but within the system that we live in, yeah, you, you want to know who you are. So that’s one reason. And a lot of people feel really unsure and it’s something that you had referred to before. It’s like, okay, is this PTSD or C PTSD or ADHD or ADHD or, you know, depression, anxiety or all of these things?
00:31:11:19 – 00:31:44:22 Speaker 2 Yeah, maybe it is, but it still can be autism. Do. In fact, I don’t think I know anyone who just has an autism diagnosis by itself. But so a lot of people don’t feel comfortable saying that they know for sure. And I understand that because it’s confusing. And in the U.S. to get a diagnosis, there’s very few people who can do that.
00:31:45:00 – 00:32:28:18 Speaker 2 You know, technically, there are people who are trained to diagnose in the DSM, so any mental health professional. But professional ethics require you to be competent, to be competent in that specific condition, to be able to diagnosis and most people don’t feel comfortable. They don’t have any extra training or a lot of experience. And in order to get a diagnosis in the first place, you need a psychiatrist, which in the United States, most psychiatrists don’t do evaluations.
00:32:28:20 – 00:32:55:08 Speaker 2 They do mostly medication management because they’re so in demand for that that, you know, they’re very needed. Their expertise is needed for six months and they don’t get to do a lot of therapy. I think some of them, you know, do some. But that’s under the the very stressed system that we have. That’s not what most of them get to do.
00:32:55:10 – 00:33:30:05 Speaker 2 So were neurologists can including with children, but they also rarely do. And then children can be diagnosed by developmental pediatricians, which is a specialty within pediatrics. But they’re so rare, there’s so few of them. And, you know, their centers have, you know, yearlong wait lists. So you’re left with psychologists who are trained specifically to do diagnostic testing and assessing and evaluations.
00:33:30:07 – 00:34:09:21 Speaker 2 And still a lot of them don’t have experience or comfort with adult autistics, especially because a lot of the tools used to diagnose are for children. And that is changing. But kind of the most well tested tools are some that literally in the kit, if you buy a kit to to do the the ADAS and it’s autism direct observation schedule don’t quote me on that one there’s toys in it.
00:34:09:23 – 00:34:48:18 Speaker 2 You know that is the tool that is most used. So it’s it’s we’re in a situation where there’s not a lot of capacity to to diagnose, but people want a diagnosis to confirm what they already think. People want a diagnosis because a lot of times in error, they want services. And being diagnosed with with autism as an adult is not going to change very much.
00:34:48:20 – 00:35:23:14 Speaker 2 You’re still going to get services based on your needs and it’s not going to change that much. But I think that’s so much changes for the individual when they know what they’re looking at. What is the experience that I’m having? And I think there’s two main categories that people get an advantage in knowing who they are, and that’s whether they are professionally diagnosed or not.
00:35:23:16 – 00:35:54:00 Speaker 2 And that community with other at six or questioning Autistics and Self Commendation is deciding how am I going to change things to be more compassionate and just allow myself what I need instead of trying to constantly do what everybody else is doing? And I think all of us can relate to that, even when no one else is looking.
00:35:54:02 – 00:36:22:00 Speaker 2 You’re still trying to fit into This is what I’m supposed to be doing right now when I’m home alone and there’s no one here. I think that anyone who has been able to kind of kick that aside at a younger age, especially at a younger age, is going to have a happier experience and okay.
00:36:22:01 – 00:36:58:01 Speaker 1 Okay. So another question I wanted to ask you was about the role of community. Just knowing what I know about myself and what I feel like supports me and what doesn’t. I just wish that there were like resources, like there weren’t just like doctors that were gatekeepers of these like, strategies and tools. And I just keep thinking like, you know, for people like me who are questioning and, you know, are trying to triangulate what is wrong, I wish we just end this.
00:36:58:01 – 00:37:37:09 Speaker 1 Okay, now I’m rambling, but in a in a previous, I think either exchange or something that you had shared publicly, you mentioned that eventually, like neurodiversity would become so normalized that we wouldn’t even have to think about self diagnosing. Right. Or thinking that there was something wrong with us. And so I’m curious for you, how might we sort of create an environment and a future where.
00:37:37:11 – 00:37:38:03 Speaker 2 People.
00:37:38:03 – 00:38:02:01 Speaker 1 Who are questioning like, what is wrong? They had better access to resources to become acquainted with strategies and tools and supports in communities that can help them feel less alone?
00:38:02:03 – 00:38:32:21 Speaker 2 How? I mean, who. Yeah, how do we get from where we are to there? There are a lot of of minds, you know, hearts and minds is what we have to do because most of what we need people aren’t aware of. They don’t know what how to help us and we don’t know how to get help either. We don’t know what we don’t know.
00:38:32:23 – 00:39:07:13 Speaker 2 So it is a complicated thing at this point. And I don’t think that there are, you know, doctors who are out there, gatekeeping resources that we need. The people who have the resources are other autistic people who have kind of gone through those trenches. And that’s that’s out there. There are those resources out there from other autistic people.
00:39:07:13 – 00:39:35:06 Speaker 2 And that is kind of the only way. And that’s one of my biggest criticisms about kind of the world of autism is that the people who are in charge and making decisions and implementing programs and in charge of, you know, huge budgets don’t know the nuance. They know their result. They know what it looks like from the outside.
00:39:35:06 – 00:40:11:23 Speaker 2 But that is not the the whole story. I recently I took a it was free continuing education course through Harvard Medical School. And it was for it was directed at primary care providers. But it’s open to kind of any medical specialty, including social work. So I was like, I’m to see what they are telling these doctors and hey, I’ll get six Qs towards my own license renewal.
00:40:12:01 – 00:40:47:16 Speaker 2 And it was really interesting because their strategies and the effort that they put forth, all of the staff work at this Massachusetts clinic called the Lauri Center. It’s it’s specific for autism. L You are either. And some of what they shared was really great and some of it was like, you’re like 90% there or 60% there sometimes.
00:40:47:18 – 00:41:20:03 Speaker 2 But they did share that their process for creating this course included some autistic self advocates and parents, but they still didn’t get all the way that and that is probably one of the most progressive tools that I have seen from a major institution. So it’s like, you guys are so close. You’re really close.
00:41:20:04 – 00:41:20:21 Speaker 1 To what’s missing.
00:41:20:21 – 00:41:47:09 Speaker 2 Good job, keep you up. What do you what was missing? Nuance and from the inside and you know, some of it was really just subtle. Some of it was just like language stuff like they should know better. You know, you were saying something about, you know, using the term high functioning and and kind of knowing that’s probably not the right thing.
00:41:47:11 – 00:42:02:08 Speaker 2 Okay. These things change, right, Because the community is changing. So right now, the most common kind of politically correct way of saying it is low support me.
00:42:02:08 – 00:42:03:11 Speaker 1
00:42:03:12 – 00:42:44:21 Speaker 2 So and that kind of goes along with the levels that people still don’t like to use. But like level one is needs support and level two is it’s and I think it’s substantial support and level three is very substantial support. Right? So a lot of people are referring to it as low support needs for level ones like me and probably you and then medium and high and they use terms like high functioning or using person first, which, you know, in the community.
00:42:44:21 – 00:43:03:21 Speaker 2 It’s very clear that people prefer identity first. There are people who don’t. And, you know, those people should be honored. Of course. But I would say if you’re addressing the whole community, you should probably use what everybody.
00:43:03:23 – 00:43:05:22 Speaker 1 Wants.
00:43:06:00 – 00:43:38:00 Speaker 2 You know, at least the majority. So just things like that. And then there were some other like specific things. They they did a walk through kind of of a medical appointment with a non-speaking autistic man. He was in his early twenties and he was they were talking about transitions of care, like going from pediatrician to adult care. And I thought was really interesting because the discussed how they were trauma informed.
00:43:38:02 – 00:44:09:05 Speaker 2 And this particular person had a history of really serious GI stuff. So in part of the appointment, they wanted to palpate the abdomen, you know, just touch it and see, you know, is it hard or, you know, is having any pain. And what was really interesting to me is like they spent all this time talking about informing the patient what’s going to happen and what they’re going to do.
00:44:09:10 – 00:44:44:14 Speaker 2 And then this doctor just like kind of grabs his pants and pulls his pants down a little bit and starts touching his very low abdomen like, you know, a sensitive area like close to things you don’t want people to touch. And I was like, my gosh, are you kidding me? He really needed to, like, inform him ahead of time for that, especially because there’s a really high rate of abuse in the community of autistics in general, but especially in those with high expertise.
00:44:44:16 – 00:45:19:01 Speaker 2 So just things like that, like, that, that one made me cringe. And you could tell, you could tell he was uncomfortable. He the patient was like, he recoiled. So there is so much more room for growth. But but what’s missing is autistic eyes more, more autistic people seeing what neurotypical people don’t see. They they just don’t.
00:45:19:06 – 00:45:45:16 Speaker 2 And apparently that’s the it’s supposed to be I kind of like like my way. That’s something that I wanted to go back to in in like my own experience. You know, I got called weird so much as a kid that by the time I was in like seventh, eighth grade, I was like, okay, yeah, I’m weird. Let’s let’s go.
00:45:45:18 – 00:46:19:07 Speaker 2 Let’s be weird. So I really made being weird, like, acceptable. I know this is who I am, so I, I didn’t stop masking, but I was much less, you know, I was just going to like what I was going to like. And I’m going to like it a lot. And, you know, I’m going to be weird about it and I’m going to talk about it all the time.
00:46:19:09 – 00:47:13:02 Speaker 2 And people accepted that. People accepted that I was the weird one and I pretty much have just done that my whole life and I am absolutely happier for it. I remember in seventh grade kind of trying to figure out what am I trying to do? Because at that point I was I had matured enough that I realized that I could mask, that I could fake it enough to get by most of the time, especially because once I realized that neurotypical people’s relationships, you know, unless they’re very close, they’re not very in depth.
00:47:13:04 – 00:47:40:06 Speaker 2 They’re mostly superficial. So if I didn’t have to talk about deep stuff with them, then it was pretty easy to be like them. But I don’t like that. I really am, and I don’t get joy out of that. So but I remember being in seventh grade and sort of having these, like, popular girlfriends and trying to hang out with them.
00:47:40:06 – 00:48:11:03 Speaker 2 And I was like, I don’t think I can do this. So I ended up with like, I guess what you would call now, like emo kids. And I was like, Yeah, this fits this. This works for me. And I, I totally, I guess, recommend, I recommend that people just do what makes them feel happy because that’s really all that matters.
00:48:11:06 – 00:48:49:19 Speaker 2 And the take home to me is, okay, so in these like shallow interactions you can get by. But what we know from research is that they can tell that you’re different anyway. So even if you’re masking, even if you’re good at it, people can tell with what they call thin slice. So a couple of studies that they’ve done, they’ve had neurotypical people watching videos of people answering questions and they’ve done in a couple of different ways.
00:48:49:21 – 00:49:26:06 Speaker 2 So watching videos and this is just like less than a minute of people talking and they ask them to rate if you’re interested in having more interaction with this person and the autistic people much more than the neurotypical people were, like, No, thanks, don’t really want to. When they ask them, when they ask your typical people to rate the same conversations, the same words in writing, there’s no difference.
00:49:26:08 – 00:49:32:17 Speaker 2 So it’s all in. It’s not about what we say. It’s about how we are.
00:49:32:18 – 00:49:56:03 Speaker 1 That’s a brilliant study. It’s really interesting to me because, you know, as you’re saying that, like, it’s not so much the structure of how things are said. It’s it’s the like the emotions, the the the timing, the you know, all of that.
00:49:56:05 – 00:50:44:01 Speaker 2 Yeah. So I don’t know my advice in life is, I mean, if if people really want to be diagnosed, I think they should get to right now it’s very hard. And I mean there I have a lot of followers who are in in the UK and the wait lists there are crazy long like 2 to 4 years. And I mean, here there’s just huge pockets of the U.S. where there isn’t anybody who has experience or they’re, you know, there might be a psychologist or there might be a children’s hospital that diagnose as kids, but there isn’t someone who has experience with adults.
00:50:44:03 – 00:51:20:04 Speaker 2 And so you have, you know, like a psychologist who is used to seeing kids and adults don’t look like kids. So it’s it’s difficult for them to step outside of of that, especially like expecting someone to have higher needs than they do not really understanding masking as such a huge part of our lives. Yeah.
00:51:20:06 – 00:51:51:11 Speaker 1 Yeah, yeah 100%. And I think I’ve been thinking about this idea even when you were talking about Cassandra, right? And how like, you have this gift of knowing so much of. But nobody believes you. So in a book called Cassandra Speaks by Elizabeth Lesser, who’s the co-founder of the Omega Institute in New York, She she talks about the patriarchy, right.
00:51:51:13 – 00:52:30:05 Speaker 1 And how, like, patriarchal concepts have really prevented, like women from coming into their power and sort of like oppressing that that part of society. And I was wondering for you, like, do you think that neurotypical is a patriarchal, patriarchal concept? And if so, like, what are some ways we can balance that out with like, you know, more yin energy or like Omega energy, right?
00:52:30:07 – 00:53:10:02 Speaker 2 So I think your question is really interesting. Is the patriarchy part of narrative quality? And I think that it it has to be. It has to be. I think that kind of all of those concepts are married to each other, you know, white supremacy, the patriarchy, all of these systems that demand us to conform to certain ways of being.
00:53:10:04 – 00:54:03:06 Speaker 2 And yeah, I mean, being a neurotypical is an expectation. It’s an assumption and it’s unquestioned. And if you’re not that way, usually there’s one more step to the question. If you’re if you’re not neurotypical, you can be accepted if you’re useful. So if you are, you know, I mean, there are lots of famous examples of people who are obviously not neurotypical who were useful like Tesla, very useful person who didn’t end up winning kind of in his life, but in the long haul he did.
00:54:03:08 – 00:54:39:21 Speaker 2 But, you know, he was at some points he was not functioning in his life. But people will allow that. And of course, because he’s a man too. So that there’s that part. Yeah, I definitely think that those structures are embedded, you know, in one another. So how do we address that? We have to address all of them. We we can’t pick one.
00:54:39:23 – 00:55:15:20 Speaker 2 And that’s something that I try to tell parents especially. But also I’m coming to see that other, like autistic adults need to have this pointed out for them, too. Is that you are part of a marginalized group. But that doesn’t mean that in every situation you’re marginalized because you have different levels of privilege depending on where you are and who you’re with.
00:55:15:20 – 00:56:15:06 Speaker 2 And but the important thing to remember is that those structures, white supremacy, the patriarchy, capitalism, all of these ways, the normal ways of being in the world are harmful to most people, to most people. So if you’re going to hold one of them up, you’re you’re hurting yourself in the long run. So something that I always try to make clear to parents is that you’re an advocate now and you need to do a whole lot of work to understand your own bias and use use your critical thinking to start thinking around these problems and working through them.
00:56:15:08 – 00:56:58:11 Speaker 2 And something that I don’t think a lot of my countrymen realize is, is that you have to do that work and the default is to accept all of these systems. That’s the default. And you only grow and become an advocate when you start to see how they are working against people. And and in the case of a lot of people to how how you are being supported by those systems.
00:56:58:13 – 00:56:59:02 Speaker 2 Yeah.
00:56:59:04 – 00:57:21:02 Speaker 1 Last year I had a conversation with somebody about me potentially being autistic and on the spectrum and this person very much was like, you know, I think people who self-diagnose like, that’s very dangerous. And I was wondering, like, dangerous for whom?
00:57:21:04 – 00:57:51:09 Speaker 2 Yes. I think that when someone says that they mean to you. That’s what they mean. They mean that you are I’m sorry, you might be wrong. And that can be really harmful to you. And I don’t trust you to make such a super important decision, because what you’re wrong. And my response to people when they say that is what?
00:57:51:12 – 00:58:23:22 Speaker 2 What if they are wrong? Okay, so self-diagnosis gives you what it gives you community, it gives you accommodations. It doesn’t stop you from getting mental health care if that’s what you need. It doesn’t stop you from getting medications. If that’s what you and your provider has determined will be helpful to you. It doesn’t mean that if you are having suicidal thoughts that you should take care of it yourself.
00:58:24:00 – 00:58:56:23 Speaker 2 You know? So I always like to ask, I’m a fan of the Socratic method. It’s like, well, what do you think is going to happen if someone is wrong? Because I can tell you that lots and lots of professionals have been wrong about how they’ve diagnosed people, you know, people who are autistic and instead were diagnosed with borderline personality disorder or bipolar disorder.
00:58:57:01 – 00:59:32:22 Speaker 2 And, you know, both of those things can co-occur with autism, but sometimes it’s wrong. Sometimes those traits I know for myself, I had a psychiatrist who told me that this before, obviously before I was diagnosed. It’s like, you know, you just you you really have a lot of features of borderline, but, you know, you have this stable marriage you’ve been married for at that time, I was like married like ten years or something.
00:59:33:00 – 01:00:10:14 Speaker 2 And, you know, you don’t like I didn’t have a lot of side like suicidal ideation, which is really common for Portland, but it’s also really common for autistic people to but I didn’t have this thing, so I didn’t get the diagnosis. But he wanted me to know that that was what you know, that was the bell I was ringing for him, but I was only given I only had anxiety and depression as my diagnosis and trauma.
01:00:10:14 – 01:00:42:01 Speaker 2 You know, I had elements of PTSD, but I also didn’t get a PTSD diagnosis. I think in his case, he was trying to protect me from stigma because BPD and PTSD are highly stigmatized. But I just don’t think he had like so many, you know, he wasn’t looking for autism. He didn’t know what it looked like in a in adult women especially.
01:00:42:03 – 01:01:12:22 Speaker 2 So who is it going to hurt? In my opinion, I don’t think it hurts anybody. are there people who are going to be wrong about their self diagnosis? Yeah, there are. But I absolutely 100% know every single late diagnosed adult I know had misdiagnosis before they figured out or were diagnosed as autistic. And mainly you figure it out too.
01:01:12:22 – 01:01:45:10 Speaker 2 I don’t know very many people who were diagnosed with autism. And it was a surprise. Usually you go looking for it because you already know. So, yeah, Who does it hurt? It just hurts their feelings. I think it just hurts their little feelings that you are, you know, standing up for yourself and deciding who you are. And you don’t want that.
01:01:45:10 – 01:01:52:03 Speaker 2 No, no, no. Somebody else should tell you who you are.
01:01:52:05 – 01:02:01:05 Speaker 1 Thank you so much for listening. If any part of this episode resonated with you, please connect with us on social media at the links in the show notes. Until next time.