Episode 2: Unburdening Autism

[00:00:02] Speaker A: Welcome to Unburdening a mountainorth Podcast where we unburden mental health topics from stigma like RFK Jr. Unwrapping a steak from a piece of cold tinfoil. I bring up RFK Jr because in addition to being a sensational influencer for the carnivore diet the Secretary of Health has had, some are real talking points on our topic today, which is autism. I want to spend the first part of this episode contextualizing the current American conversation around autism, because while it may seem out of pocket, this kind of almost supernatural fear mongering around the diagnosis is not new. We'll go back in time and speedrun the history of autism starting before the medical model, the history of the dsm, to our current understanding of the social model of disability. Then we're really going to get into the meat of this episode. I'm going to share with you guys an interview with Shannon Beaver, a licensed therapist at Mount north, and her adult son Evan, who is autistic himself. In our roundtable discussion, you'll hear their personal story of what it was like to navigate autism as a family. Now, as always, I want to qualify that the information presented in this podcast is in no way complete. The experience of autism is diverse and informed by culture, medical history, family history. Like everything else, it is nuanced and no one podcast can cover it completely. So if you have your own experiences you'd like to add, I encourage you, please share in the comments. So I began this episode with a zinger about RFK Jr. Because the Secretary of Health has had some wild theories about autism. These theories have amounted to various platforms of misinformation about the causes of autism, which he has publicly attributed to everything from Tylenol use to vaccines to circumcision. You can see how each theory gets progressively more superstitious. But just so we're clear, the most verified research indicates that autism is genetic, a product of nature rather than nurture, like being born with blue eyes or brown hair. It's just how some people are. That said, RFK's conspiracy theories about the causes of autism would not be gaining so much traction if there wasn't a lot of uncertainty and distrust between the public and health institutions right now. And we'll come back to why that is. But for me, RFK listing fake autism causes isn't even the most disturbing part. What I find most disturbing about RFK's rhetoric around autism is his use of disease metaphors. He describes autism as an epidemic, something to be eradicated. And when he says this stuff it's not like he's just some guy on the street corner babbling off whatever he feels like saying. He is the Secretary of Health of the United States, which means public policy is going to organize around whatever he says. What he says is going to impact funding, it's going to impact resources for autistic people. So we have a lot to get to today, to say the least. That said, I would be remiss if I didn't go into some of the real reasons why the rate of autism diagnosis has gone up. And the reasons, guys, are actually really boring. It's like methodology stuff, okay? It's not as exciting as Tylenol or vaccines or circumcision. So here it is. While it's true we've seen that steep increase in the rate of autism diagnosis, this is due to an increased understanding of how autism actually presents. We have better screening tools than we did before and a better understanding of how autism can look different from person to person. A good example of this is when it comes to gender. There is a long history of gender bias when it comes to autism diagnosis because providers were not trained to see and understand how autism presents differently in girls and women than it does in boys and men. So a lot of girls were not getting diagnosed. And so what we're seeing now is underrepresented groups getting access to diagnosis. And that's one reason why the numbers have gone up. Another reason is there were some pretty significant changes made to the DSM 5, the Diagnostic Statistical Manual that therapists and providers use to diagnose. In 2013, the DSM moved away from Asperger's syndrome and classified autism as Autism Spectrum Disorder, which again expanded the diagnosis to reflect new findings. In addition to this, Asperger's syndrome was retired because the research informing that old diagnosis was done during the Third Reich, which means it was funded by by Nazis as part of their eugenicist program. And so their ideology is just in that old diagnosis, and we're going to come back to that. But for now, I want to take us back to the very beginning, before science was the filter through which we understood the world, ourselves and our family. Human beings told each other stories, came up with folklore or myths to describe experiences they were having. I'm going to tell you the story of the changeling. This folklore is cross cultural, which means it exists in different places around the world. But in Irish Celtic culture, my culture, it goes like this. A baby is born, and the baby is born inside the house. And maybe at first, the mother sleeps with the infant. But eventually, it is developmentally appropriate for the infant to sleep alone. And at this point, the fairy king takes notice. And the fairy king starts to want the child for himself. He waits until night, and then he sneaks into the house and steals the baby and replaces the baby with a doll figure or fairy figure. And so some days pass, some weeks pass, and at first, the parents don't even notice that this exchange has taken place. But slowly, they start to see that something is off with their baby. The baby seems a little stiff or distant and is not meeting his or her developmental milestones as expected. At this point, the parents suspect that their baby might be a changeling. And so they subject the child to a series of tests to prove whether the child is real or not. And these tests are honestly fairy tale torture. They are the kind of ordeals you might read about in a book about witchcraft. So the parents might burn the child alive or boil the child with eggshells. And if the child is a changeling, these tests will smoke it out of the house, up the chimney, and the original child that was stolen by the fairy king will return. So while the changeling folklore uses fairy tale motifs such as the test of fire and water, it is not a true fairy tale. It doesn't have a hero, it doesn't have an arc. Instead, some academics have suggested the changeling folklore is a mirror to the anxiety and fear parents at this time in history felt about neurodevelopmental disorders such as autism or down syndrome, or other things that can impact child development. Now, these changeling stories come from a much more brutal time in our history as humanity, and specifically a much more brutal time for children. But I think they still illustrate what we see in a lot of present day anxiety around autism in children. The changeling myths remind me of the autism speaks perspective on autism in that the emotional anxieties or worries or fears of the parents are centered, while the emotional world of the child is completely forgotten or not even mentioned at all. And for listeners unfamiliar with the controversy surrounding the organization Autism Speaks, it's basically that people in the autistic community had some valid critiques about how the organization had this paternalistic philosophy. They weren't putting autistic people in leadership positions. They weren't listening to what the community said that it needed. And because the experiences of autistic people weren't being centered in an organization that was supposed to be for autism, what ended up happening was it ended up becoming just like a hub of stigma. And I want to compare this briefly with the sunshiny paternalism of the Indigo Children. For those unaware, Indigo Children are a New Age concept from the 1960s and 70s developed by a researcher, a parapsychologist at the time named Nancy Ann Tapp. And she was noticing that there were a lot of children born in the 1960s with what she described as indigo auras. And these children had a lot of traits that today we associate with ADHD or autism. They were very creative, very sensitive and empathetic, sometimes described as psychic. That's how empathetic and sensitive they were. They were known to dislike authority, so they had that rigidity of thought. And the idea was that the Indigo Children were here to shake things up, to bring about big changes in the world. This was in alignment with the vision of a lot of folks in the hippie movement at the time. So much so that a part of me suspects some of these adults were projecting their own unlived dreams and ambitions for change onto their children. Carl Jung famously said, the greatest burden a child must bear is the unlived life of the parents. And I think we see some of that here. That said, the idea of Indigo Children gathered a lot of traction in its time, and for some good reasons. It was a strength based perspective of autism and adhd, and this did not exist in the scientific community at the time. So there were many people who used this and benefited from it. There were whole books written about Indigo Children, there were videos and movies produced about it, there were songs about it, there were conferences held around it, speaking engagements. It became a commercial enterprise. And the people profiting from that were often not the children themselves. The material conditions and the very real challenges children and adults with ADHD and autism can encounter were not fully honored in this framework because no matter how psychic or empathetic or brilliant you are, you still have to reckon with the world and you still have to survive it. And that can be very difficult when you feel like you are struggling with something, but everyone around you is telling you that it's really a strength. And I am smiling right now. I know you can't see because this is audio only, because this was, to a certain extent, my mom when it came to my undiagnosed adhd. And to be clear, my. I love my mom and I love that she saw the best in me. It's probably a reason why I am here on this podcast today. But I just remember thinking, if I am so gifted, if I am so creative, if I am so brilliant, why is everyday life so hard for me? And no one could give me an answer to that question, and I felt alone in it. So that's the limitation of the Indigo Children philosophy. That said, it was a philosophy that was a lot kinder than the negative assumptions made by Autism Speaks and far kinder than the visceral fear we saw portrayed in the changeling folklore. On that note, I want you to really think about the changeling story from the child's perspective, how it must have felt to be treated as an outcast or changeling, to have that deep feeling that you don't belong, that something is wrong with you. So this feeling of wrongness is something that Dr. Devin Price writes about in their book Unmasking Autism. I read this book to prepare for this episode and was just blown away by. By Dr. Price's ability to balance the emotional world of their experience and the experiences of other autistic people they interviewed to write the book with some good science. Science has the potential to be humanistic, though it hasn't always been at this point. I want to talk about the history of autism as a diagnosis and how we got to where we are today. Early on, autism was actually classified as a type of pediatric schizophrenia. And just like today, people were reaching for causes, right? Think back to the anxiety of the parents in that changeling myth, right? People really wanted answers. And so what did they do? They did what humans seem to do best, which is find some woman to blame. So this was in the 1940s. One of the researchers here was Leo Kanner. He came up with this hypothesis of the refrigerator mother, this idea that a mom could cause autism in her child if she wasn't warm enough, if she wasn't enough of that soft feminine ideal. Obviously not true. Again, remember, autism is largely genetic, a product of nature, not nurture. Around this time in the 1930s and 40s, a researcher named Hans Oseberger was doing research on autism in Nazi occupied Austria. He is funded by the Nazi eugenicist program there. And many of the children he is researching are orphans whose parents have been disappeared or murdered by the Third Reich. So in addition to likely being autistic, a lot of these kids were having natural reactions to grief and trauma, trauma and fear because they were living during the Holocaust. Osberger would group these children into two categories. One category he called Asperger's children. These were kids who were pretty good at expressing themselves. They'd be a level one on the three level autism spectrum diagnosis scale today. But remember, all these observations were made from the outside looking in. They were based on observable Behavior, not on the inner worlds of the children. So they are very limited in that way. And who knows what these kids were struggling with on the inside. The other category of kids would have likely been a level three on the modern ASD scale. And what that looks like is struggles in multiple areas of functioning. So not just socially, but maybe with some motor skills or with language in general. Kids who would have experienced autism as more disabling in the society they were in. And this sorting of kids was very much in alignment with Nazi philosophy. The Nazis believed that your worth, your inherent worth, was based on the labor or capital you could provide to your country, whether that was work or reproductive labor. And so Nazi science was obsessed with categorization. How can we tell who is valuable and who is not? And for those who are not, how do we get rid of them efficiently? Which brings us back to Hans Asperger, the namesake of Asperger syndrome, which was in the DSM for years. This man signed the papers that sent at least a few of these kids to the camps where they died. And we have definite records that this happened. It's likely there were other records that were destroyed after Europe was liberated. So I'm going to pause here and have a personal reaction, because if you are listening to this and feeling sick to your stomach upon realizing that the American Psychological association thought it was okay to use Nazi science as their guiding light for one of the largest diagnostic categories in the dsm, that pit you feel in your stomach is the rational response. That is the healthy anger. Now, I am a therapist, but I have also been through the wringer of the mental health care system myself. I know the history of psychiatry. I know how dark it is. Much of the research in the 20th century was a result of the manipulation and mass abuse, honestly, of vulnerable populations. These atrocities are the reasons why we have an ethics board today. They are also why the public has lost faith in experts. It is not the RFKs of the world who have caused the public to lose trust. Institutions gave away the trust when they chose to go ahead with these abuses of power. The RFKs of the world simply took advantage of that dynamic when they saw it. They jumped in and filled the void with propaganda, whatever they needed to fill the void with to make some money or to forward their political agenda. But in order for psychiatry to move forward, there has to be justice, there has to be atonement, and there has to be compensation or reparations for the past. In fact, moving forward, I think more and more we are going to see the limitations of individualist models, such as the medical model, and go towards more collective models for understanding our mental health. In fact, my favorite model for understanding autism comes from the social sciences. It's the social model of disability. Basically, it is a counterpoint to the medical model. What the social model of disability suggests is that how disabled we are by a condition is going to be contextual and directly related to the society we're in. Right? So, for example, if everyone spoke sign language, being deaf or hard of hearing would not be disabling. But because not everyone does, we're not all taught it, it is more disabling. The social model of disability also has implications when it comes to autism. Right now, there are actually theories from evolutionary psychology that suggest that different neurotypes, autism, adhd were advantages. When we were hunters and gatherers. It was an advantage to be very committed to a task you were doing. It was an advantage to be sensitive to your environment. It could be that for some people, a large part of what makes autism disabling is the context of modern work as well as the pace of modern life. Now, of course, use nuance when thinking about this, right? Someone with autism will have autism no matter what kind of society they live in. But the extent to which autism impairs their functioning, that can be either aided or harmed by the social policies of the society. They're in the workplace they're in, the school they're in. So I know we spent some time here setting up the historical context, but I really think it's important to understand the history of why autism seems to be such a touchy subject. And the reason for that is that it seems like whether we were looking at folklore or looking at the medical model, either way, the internal world of the kids or the adults with autism was not considered until relatively recently. So I'm really excited for you guys to hear this interview with Shannon and Evan, because over the course of our conversation, you will hear them look at this inner world, this inner experience through different lenses, and whether you are the person with autism who is beginning to understand your own world, or whether you have someone in your life with autism, or whether you are just curious about this topic. I think there's a lot of good stuff here, so, yeah, I'll let them take it away. [00:25:12] Speaker B: Welcome, Shannon, and welcome, Evan, to the podcast. I have been so excited to have this conversation with both of you. To begin, why don't you two introduce yourself to our listeners, tell them who you are and, yeah, what's going on in your world? [00:25:31] Speaker C: Hi, my name is Shannon Beaver and I own a small group private practice called Mount Noor. I am a licensed clinical social worker. I hold a couple other credentials, but my most important job is being a mother. So I am Evan's mother. I have 21 year old, a 14 year old and a 4 year old, all boys. [00:25:55] Speaker D: Hello, my name is Evan Mosey. As aforementioned, I am Shannon Beaver's son, the 21 year old. I am currently pursuing a degree of electrical engineering at Yale. I'm autistic young adult trying to find my way in the world. [00:26:13] Speaker B: So Evan, for you, what do you think is the biggest misunderstanding about autism we have as a culture? [00:26:22] Speaker D: One thing that immediately comes to mind is that a lot of people have a very singular view of what autism is and how it's represented within a population. For one, with how politicians like RFK sell autism in a lot of ways, they focus a lot on the autism speaks philosophy, on autism, where it's very much a low functioning view only and also at the same time acting like it's something that's completely uninsurmountable. Also well lumped in with many other disabilities like down syndrome and other things that can be comorbid but also become the same one thing in order to fear monger in a lot of ways, I find. Yeah, and I would say that like one of the biggest misconceptions is that it can show up in many different ways in many different people. That is a spectrum type of diagnosis, not a be all, catch all one thing. And that it can be pretty complex in how it goes from person to person. [00:27:25] Speaker B: Thanks for bringing up the philosophy aspect because I think philosophy guides a lot more of science and science funding than, you know, a lot of us would like to admit. And so that means that a lot of the information that gets out there is put through a filter, like in the case you brought up, the autism speaks filter. [00:27:49] Speaker C: Yeah. [00:27:50] Speaker B: Shannon, you know, I want to ask you the same question. You know, as a mom, as a therapist and a practice owner, what do you think is the biggest misunderstanding about autism? [00:28:02] Speaker C: So I would have to agree with Evan 100%. I think that we've been working with autism for at least 20, 21 years now and learning to understand what it is and how it presents and how folks with autism function within this world. And unfortunately, I feel like the perception of autism has kind of come full circle. So when Evan first started showing signs of autism, it was very much this disease. It was disabling. I was bawling and so afraid that I broke my child or my child was going to be broken. And then over the years helping him to navigate that it wasn't. And I think we'll get into this in more details, but it wasn't until I discovered that neurodivergence was really his best attribute and his strength and the fact that autism isn't harming him at all, it's helping him and it's his superpower. When I came to that discovery, it was because of that filter, it was because of that lens, it was because a lot of people were understanding that functioning differently really is a strength. It can be a strength if you use it as such. And now with the latest, I want to call it scandals involving Tylenol or whatever, it's kind of come back to this disease and people are acting like it would be the worst thing in the world if their child was autistic. And again, I don't want to dismiss anybody's experience if their child is severely impacted, impacted by their symptoms and they're completely non verbal. But even working with kids that are non verbal, the way that they see the world is just remarkable and it is reality. And they're able to find all kinds of ways of making the world a better place, primarily because they function differently. Right. And so the fact that autism is a bad thing or being different in how you function and how you see the world is a bad thing is one of the biggest misconceptions. And the other thing that I always like to point out when we have these conversations is that it's not functioning differently is generally not a disability. It's the environment that's disabling. Right. And so trying to force folks that see things differently, that experience things differently into how more people might do it holds them back and it holds us all back. Right. And we can say that about a lot of weight, a lot of differences in how folks brains function. Like ADHD or most of the high achievers, beautiful minds in our world throughout history have had differences and how they function neurologically. Right. That's, that's what makes them special. [00:30:49] Speaker B: I'm glad you brought up the environment because I think, think that what we're talking about highlights the limitations of the medical model of disability. And really some disabilities are defined by the environment and not by necessarily medical markers inside. I think about this from like an ADHD lens. I always describe ADHD is it's like being a husky in an apartment. Huskies were meant to be working dogs in like these intense conditions, going miles and miles a day. And when they are in that environment, they are happy and thriving and achieving, but you put them in an apartment with maybe a very regular schedule, and you're going to have what people would call, like, a bad dog. But that's not the fault of the dog. Right. It's environmental mismatch. [00:31:44] Speaker A: Okay. [00:31:45] Speaker B: So, yeah. Evan, when did you first first suspect that your brain worked differently than the kids around you, and what was it like? [00:31:55] Speaker D: Well, I always had a bit of a disconnect in the way my brain works, but it was always kind of a complicated feeling, whether it was kind of my fault or it's the product of everything, but it kind of always hangs over you in a decent way. And the way people treat you and the way teachers treat you especially. But for specifically, like, autism, that kind of came to a head whenever I watched Rain man, of all strange things, which isn't really the best rep, but it was at least something just different enough and just relatable enough to where I was, like, kind of able to connect with someone for, like, the first time with a lot of the weird things that were happening, a lot of the weird problems that I just thought were stuff that I just stunk at in general or, like, would often get made fun of for. And then it slowly came to a head throughout sixth grade through a lot of stuff that happened, we'll just say that eventually led to the diagnosis that helped me to slowly but surely start to understand what exactly was happening in my skull the whole time. [00:32:59] Speaker A: Yeah. [00:33:00] Speaker B: You know, and I think, yeah, some of those early representations, they can be a little clunky. [00:33:05] Speaker C: Right. [00:33:05] Speaker B: But I think this speaks to how even just trying for representation, even if we don't always get it right, is important. And, yeah. Shannon, I want to ask you, you know, when did you first suspect that Evan might have autism? Was it around sixth grade, or were you seeing some developmental markers earlier than that? [00:33:27] Speaker C: So, for me, as a mom, things were happened much earlier. And just for a little bit of context, I was very young when I had Evan, and I moved around a lot when I was little, so I never really saw other kids grow up. Right. I was the youngest in my family, and I didn't really see anybody from baby to teenager, so my perception of, like, normal childhood development wasn't there. And I actually had him the day before I started class, my bachelor's degree at Penn State Altoona. And so, like, being a new mom, I took a lot of Human Development studies classes. I have a minor in it now. But when he. It was about, I think, 10 months old when we started noticing that he wasn't hitting some developmental milestones before that. He would get so excited, he would flap his hands. And I used to call him my little bird all the time. It was so cute and it was so wonderful. But then about 10 months old, he couldn't sit up, and everything else was on track, so that stood out to the doctor. So we started working with physical therapists, and it was as simple as just stretching. So every time I changed his diaper, I would put his toes to his nose, and within a couple of days, he was sitting up. So what it turned out is that physical rigidity that would come from him stemming, which I didn't know any of this yet, Right. But from him flapping and getting so tense when he got excited, he had tensed his muscles to the point that he wasn't sitting up. And then after that, the milestones started flying again. He was walking and eating and all of the things normally. And he could recognize by 16 months old, he could recognize all of his letters, like on billboards and cursive and all different kinds of fonts. He knew what they were, he could say them. He knew the sounds. He was pretty close to reading, but he was labeling. So he was still kind of falling through the cracks in terms of getting support. Because when the doctors would ask those questions, like, does he have, you know, X number of words? Oh, yeah, he has tons of words. But he could say, that's a cup, not I need a drink. He could say that my name was mom, but he couldn't call out me for me for help. And so as you could imagine as a young mom, that was really confusing for me and then incredibly frustrating for him. He had all of these words, but he couldn't. Didn't have intentional communication. He couldn't point to things to say that he wanted it either. And so this is kind of where I start the, what I call the hell stage of parenting, when you start to recognize that there's something different, that your child needs some type of different support, but you don't even know what questions to ask. When he entered actual preschool, so he was in an in home daycare with some other kiddos. So again with me not knowing, we just had some really big temper tantrums and didn't know how to handle that. Eating started to becoming more challenging, but I didn't know where that fell on the scale of, like, normal. I just knew it was hard and scary for me. But then when he started preschool, he. We had put him in a Montessori school and he was so Incredible. Like, he knew every dinosaur name better than I could. He could pronounce them all. And he had this amazing T. Rex growl. And like he could really. He put his two fingers out, like his little T Rex hands and chomp his head and this just amazing growl. But him going into a Montessori school had to be traumatic for him. And it was the most extensive, bestest school. All of my professors took their kids to it, worked really hard to get him in it. And that's really when the teacher was like, this is just not working because kids, I think the environment was too chaotic. If kids got close to him, he would turn into a dinosaur. They, the school tried to tell me he wasn't allowed to be a dinosaur anymore. And that was really hard because how do you tell a four year old that they can't, you know, A, feel like they're protecting themselves or B, do and be their favorite thing? So we actually were recommended to get him evaluated for autism. And this was back in the day. We were on a waiting list for six to nine months in Pittsburgh, which was several hours from where we lived. And we finally got in for that appointment and we sat in the waiting room for four hours. He was playing and he was completely fine that whole time. And then literally within minutes of getting into the office to do the actual evaluation, Evan spiked a huge fever and threw up everywhere. And so the evaluator said that she couldn't do the evaluation, but from the records and what we've told her, he had red flags for autism, but likely wouldn't qualify, which is kind of wild when you think about he was going in for the ADOS evaluation, which is technically the gold standard, but it can take, you know, five successions or something like that. So we got this very quick brush off. And with how difficult it was to get that appointment, coming back for a diagnosis was just not within reach. It used to be, I think it still is hard to see these specialists, but then it was difficult. But that's really. We had a ton of early intervention therapists coming into the home, helping with the tantrums and the feeding and the language and the occupational things before he was three. And then once, then around three, four years old is when we started preschool. And that's really when we started getting a lot more therapies involved. So. But it wasn't until he was like, he said 12 that we had access to get an official diagnosis. And I remember we left that appointment and by then, like, I knew, right? But it wasn't something that I had told Evan and it wasn't something that was like official, you know, but I knew he checked all the boxes. By then I had had my master's degree as well. I always say I got my first master's degree during that hell stage of parenting from just trying to figure out what questions to ask and where to poke. But the we left that evaluation and Evan said to me, he said, so mom, I'm autism. And I'm like, nobody, you have autism. And he's like, what? You know, what does that mean? And I just told him that, you know, you see, it means your brain functions differently and you have a gift to see the world differently. And that Einstein and Tesla and all of these beautiful brains have had that. And because you can see the world differently, that means that you can find solutions to answers that nobody else can. And I'm going to veer off and I'm sorry, this feels like a rant, but I did want to mention my thoughts on. A lot of people ask me what they think causes autism. And again, I think that there's a long, wide spectrum of autism and I think that there can be several different causes. I think when we get into some of the really difficult symptoms like being completely non verbal, those kinds of things, I think that environmental pollution honestly has a lot to do with that. We know it could affect neurological functioning. However, where I really think this isn't the name of it anymore, but Asperger's and some of the autism that Evan displays in some other minds, I really think that it's because if your logical side of your brain, if you have such a high IQ and you're, you're processing all of this concrete information, that the majority of your energy goes to that side of your brain, right? Whereas some of the other things like social functioning then don't get as much energy. And so you tend to see the world instead of like cool or in nuances or things like that, you're breaking things down in an intellectual way. And that's how you experience the world. World versus through social constructs or trying to please other people or to fit into some type of narrative that's not as relevant. Right. When you're functioning at such a high level logically, if that makes sense. [00:41:56] Speaker B: Taking it back a little to what you were saying earlier about Evan's experience in the Montessori school. It got me thinking about how making an environment accessible to like autistic kids benefits all kids. Because how many other kids at 4 year old also wanted to be a dinosaur? How many Other kids would have benefited from an environment that was, you know, sensory, inviting. And. And this goes for workplaces too, Right. Not just school. [00:42:28] Speaker C: Right. [00:42:29] Speaker B: So, yeah. Evan, is there anything you'd add to that? [00:42:32] Speaker D: Yeah, I'd say it's just having systems that are empathy first in a lot of ways, that is kind of a rarity, especially within America's current systems that are very punitive based. So I don't know. I think a lot of my experiences in my earlier dealings with autism, again, before I knew anything about it, was that I'd often just get yelled at constantly for things. People trying to, like, bang me into a better shape. But the problem is it's just, there's a point where it's just. It doesn't work that way. And it's instead, what teacher wouldn't benefit from learning to be more empathetic, learning how to work with people instead of trying to yell at them to be better in a lot of ways? [00:43:12] Speaker C: I was just going to say that, I think. And unfortunately, the first 12 years of therapies that we had for Evan, I was part of the. The problem, right. ABA is. Was the gold standard then. And, and it was really about kind of breaking his autistic tendencies in order to help him function in the normative world better, instead of figuring out how to use his strengths in a way that could benefit the world and make the world more supportive of him. And so it was like he said, yelling at him, it was really about trying to break him of autism. Right. And so that he was more. He fit into this into the classroom better, into the routine better, into somebody else's boxes better. And I understand that we all need to function within a classroom and there has to be some normative things happening. Right? But I'm sure as we get into the conversation more this ABA kind of goes beyond that. And there's simple things that we can do just by changing our perspective. And I don't want to say all aba. There are some really, really wonderful ABA therapists that are really, really good at applying ABA in a very supportive way that helps people to reach their best potential. But in general, the thing that we found was more that it was, well, you got to break them of this, right? You have to. You have to break them. You have to. And it's almost. You feel like you're breaking their spirit, right? They're being. And it's impossible, most of these things are impossible to break people up. [00:44:52] Speaker B: ABA being a therapy that has very dark roots. The same researcher, the Norwegian guy Lovass, Lovas is the ABA therapist. [00:45:04] Speaker C: Right. [00:45:06] Speaker B: Our guy also came up with conversion therapy. [00:45:09] Speaker C: Right. [00:45:09] Speaker B: It's the same idea of just fundamentally changing who someone is. And so you have to ask the question, who does that benefit? ABA functions with this idea of some behaviors have rewards, some have punishments. Remove the punishments and get really deep and really real about the rewards. Because is rewarding someone with like candy every time going to set up a strange relationship to food maybe a danger [00:45:36] Speaker D: that can come with that by just focusing on rewards and thinking that's a good solution. One thing that you do have to watch out for is not reward harmful behavior. A really easy, good example is eye contact. It might seem okay to give a reward for good eye contact, but the problem is there's a smaller kind of growing body of research that shows that eye contact is kind of so overwhelming or overstimulating sometimes for an autistic person to the point of being a bit painful in a way. It's kind of hard to explain, but you know how your ears kind of hurt with nails on a chalkboard? It kind of feels like that, but like a small jolt. So if you reward that behavior, then you in a sort of weird gold ruby way. What's the word? Rube Goldberg way, apologies. You kind of reward self harm. And that can cascade in a lot of different ways. And then you get into masking and then it becomes a whole thing. [00:46:29] Speaker C: Can you also speak on the importance of consent? Because in ABA, there's a lot of that, like hand over forcing somebody to do something. [00:46:36] Speaker D: Yeah, yeah. And I think consent is one of the biggest things that I think needs to be an understanding in autism in general. If you ever look in online spaces with autistic people talking about their experiences, a common theme that you'll see is people will be really confused about how they can find stim type activities, like listening to heavy metal music in a concert. How is that? Okay? But when people are a bit too loud in a food court, how does that make me want to, like, have a meltdown? Well, a big part of it is consent is the ability to feel like you have control within a situation. Right. And I think that's something that's almost never really talked about in a lot of ways. I think that a lot of times, especially because this is all autistic people are seen as children. And a lot of this therapy is children based. It seems like the child should have no rights within what they should be comfortable with, what they shouldn't be. In a lot of ways. There's no communication in that way. And so you get forced in a lot of really uncomfortable situations. And even if it's like, sure, I get a reward out of it, but I'm sure many of us can think of many, many situations where getting a reward for doing something that's uncomfortable without your permission is not really a conducive way of growing a person. [00:47:52] Speaker B: Yeah. [00:47:52] Speaker C: And I would add to that that with that consent. And so aba. Right. There's a lot of it is hand over hand where you're forcing their hands to do things. Or I've seen tons of therapists and parents hold their kids face and force them to make eye contact. And while yes, you might be producing some more socially normative behaviors and doing some desensitization so that they can function better and not seem as weird or something like that, you are also teaching them to disregard things like their gut instinct and to not trust themselves and you're not empowering them. Right. And so when we talk about the environment being disabling, what I see a lot of times is that these therapies and well meaning parents and well meaning people because they're forcing these AKA treatments or interventions onto people, they're actually making the, they're actually making the child disabled. Right. They're increasing anxiety, they're increasing self esteem issues, they're increasing self doubt, they're increasing the sensory issues because this, the child doesn't have any control over their body or what they're doing and they don't feel like their impulses are accurate. And so it creates a lot of confusion. And this is what really what I noticed I was doing to Evan. And so not only were the therapists doing it, but these were the interventions I was learning to help him with. [00:49:15] Speaker B: I think it's good that we're going here. Right. Because it brings up this deep topic of consent in therapy. Something that is really important for any type of therapy is that the client identifies their own goals. Like is it the client's goal to want to make eye contact or is that some messed up thing that someone decided for them? Coming back to that idea of who does this therapy benefit? So yeah, Evan, anything you know you'd add to that? [00:49:45] Speaker D: Yeah. So from my experiences, a lot of it is a blur because it's a earlier part of my childhood. But a decent amount from what I remember is just kind of constantly feeling confused in a lot of ways. A decent amount of it that I can remember is it felt like kind of like a nerd jock dynamic toward like a lot of these problems. Were simply just because I was a bit nerdy or a bit more of a yuppie within a rural environment in a lot of those ways. And that was kind of how I projected those feelings. And then a lot of that kind of experiences with trying to be forced to do X when I felt Y kind of gave the habit of pushing down any emotion that I had. And it created a cascading problem that I still struggle with to this day. To where, like, I struggle to feel present in any emotion. I kind of immediately bury it. Is my gut instinct is anytime I feel any sort of emotional response, I just try to immediately minimize it in any way, Whether that's being afraid, being uncomfortable, feeling pain in any sort of way. And also, a lot of my experiences were great showings of how stubborn I was in a lot of ways. One really good experience that kind of cascades in a lot of ways is right after the Montessori school where I was kicked out, actually, I think. Right. [00:51:08] Speaker C: Yeah. [00:51:09] Speaker D: For biting kids. Because they went into my space and then I didn't know how to handle it. And then it meltdown and whole nightmare. That we went to a school that was invented by the guy who did the 12 march. Or no, run by the guy who invented the 1212 march. So it was a kind of like an army school. [00:51:28] Speaker C: It was a charter school. Charter was run by a very militaristic guy. [00:51:34] Speaker D: Yeah. Which had its benefits since it's a bit more structured. But there was a lot of sort of like ABA adjacent type things that still stuck with me to this day. A big one was that every child had to sit down facing forward, and we got a bowl of snacks that we would have to eat. And if we didn't eat it within a time, there would be this punishment. I, of course, if it was something that wasn't great or something that was triggering or whatever you would want to call it, I just wouldn't eat it. And so what they would do is then they would take me, walk me to the office, the high school or not high school, the school's office. And in it there was this huge glass window that looked out to the playground. And so they sat you down. You had to be quiet, and you had to watch all the kids play recess for the entire recess and then just sit there the whole time. And I was a very big regular in that situation. I remember very clearly being like, I don't know, six. And there was finally good food once. And I remember eating it and repeatedly. [00:52:38] Speaker C: Sorry, you were younger than that. [00:52:40] Speaker D: Oh, yeah. And I was eating it since it was finally something that was kind of like okay to eat. And I remember repeatedly looking at the, I think teachers or whoever that were walking between the aisles of the table and repeatedly telling them, I'm not eating this because you're a dumb thing. Your dumb process work. I'm eating this because this is good food. Just. And there was a lot of things like that where even with, like, mom trying to train out my picky eating, which was like the biggest issue, we would have staredowns for like three hours. Because that rigidity of thought means that you're very good at sitting in one place at one time, being, refusing. But then that creates extremely long fights. [00:53:22] Speaker C: And that's a prime example of the impact of aba, right? And those kinds of therapies and even as doctors. So one thing about Evan is, again, he's always been incredibly intelligent. And so while some of these social things and some of these, like, day to day things were challenging, he was in preschool at 3. We left Montessori and we went to a supportive IU school which was a part of the community. And there were kids in there with some pretty severe limits to their functioning. And Evan did wonderful there. And then the next. Next school that he went to was a charter school. It was AKA a very good school. He did well there because it was very high structure. I struggled with it because, like, I am not a military kind of person. I run a pretty loose program. I appreciate flexibility and like, all of those things. So in some ways, he did do very well there. But during that time, even his pediatrician told me, well, just give him whatever you're eating and if he doesn't eat it, whatever, eventually he'll get hungry enough. No, Evan went three days, three days without eating anything. And then, you know, you can't do that. And so this perception, though, that he's stubborn like that, to me is sad. And there. There's some things that I did during that period of his life that it'll be hard for me to really ever forgive myself for. Right. Because I don't think that it was stubborn or that he was AKA like being an or something. I think that he literally, like that made him sick. That food made him feel sick. It made him feel anxious, it made him. But because we needed him to fit into our meal plan or we needed him, I was worried about calories and growth and variety and all of those things. I'm worried. Mother worries about, of course, but that's a really complicated thing. But then that's how I'm saying these things can be disabling because they get internalized as a him problem, right? And that he's just being a jerk about it or something like that. And it can feel like that a lot as you're a mom standing there being like, I just made six different things, like, please eat it. You can feel like they're intentionally, you know, being mean to you or something. [00:55:35] Speaker D: It's also disabling because it gives the person no way of controlling the situation whatsoever. And then it's just learned helplessness in a weird way. [00:55:44] Speaker C: And again, to not trust your instincts. Right? And so to the ABA therapy, I don't think, I don't think Evan recognized a lot of the therapies as aba, right? Because I was doing these things to him. I was bringing these experts in. It was when he was turning 12, he was around 12. And I remember it was almost Christmas, it was like December. But for months he was just in this rotten mood and his day to day functioning was pretty low. Like he was constantly losing things. I remember having conversations with my husband, his stepdad. Like, I'm sure if Evan's gonna like be able to drive ever. Like we, we were pretty, we knew he was very, very smart, but we were pretty concerned that like, maybe he's not gonna be able to live on his own. Like, I don't know, you know, and then you added in this really, this moodiness that he never had this disconnect. And you know, finally. And then one day we were sitting at the kitchen table and I just said to Emma, evan, what is going on? Like, what is wrong? You know, And I think at that age, a lot of times they don't know, right? Like, we could ask them a hundred times, but they don't have the words. Thankfully this day he had those words. And he said, like, mom, like, I appreciate you, I appreciate all of the therapists. I do think that it's like helping me a lot. Like I do think it's helping me at school and stuff, he said. But I feel like I've just built up this dam and it's starting to crack and I don't know what's going to happen. I feel like I'm going to come rushing out and I am like so afraid. And then that's when I really understood that the things we were doing was just trying to break him and trying to mask and teaching him to build this dam and hold himself back. That he was afraid of who he, what would come out, who he would really be. If we took that away. And that's when I started learning more about actually autistic. And then from that point, reflecting back, some of the ABA therapies we were doing were, like I said, horrendous. And, like, one thing was mornings. Almost every morning, I was sending him to school, crying. I was crying. There was almost a fight every morning. Because first thing in the day, right? According to aba, the best thing to do would be to mess up his routine to make him be more flexible, to desensitize him to flexibility. And so it doesn't matter if he needs things a certain way, he doesn't get them a certain way. And so it would be these fights and this tension and this crying and this incapacity, right. For both of us. And so one of the easiest switches that I think made things so much better is I just stepped back and I let him be rigid. I let him have his structure in the morning. He started getting himself up to his alarm, and he made his lunch. And because he's rigid and because he needs structure, him having that consent and that control, he was amazing. He was on school on time every day. He was prepared. He had all of the things that he needed. And we were happy. He was happy. And then because he had that control in the morning, he was able to be flexible, more flexible the rest of the day, right? And then you add, like, it was still hard. I think of when we added glasses, he had to get glasses. And now putting something new into his routine was a challenge, right? And so we just figured out that you could buy cheap glasses off of this place online. And we went through a couple pairs until he figured out how to get that into his routine. And then each developmental stage came with new challenges. But before that, I was forcing things onto him. Like, he tried to play basketball, and then maybe he would stick his hands in his pockets to kind of not pinch his. Pinch his leg, but, like, softly pinch his leg because he got nervous. Well, obviously, can't do that when you're playing basketball. And so instead of working with him through that, I saw this pocket shot. Like, I cringe at the fact that I did that to him. And then we could go on and on. There's so many things. And I don't know if he even remembers it, because, like, I think for him, as he's described as, it was a lot of confusion, right? A lot of, I have an impulse or a need to do this or to not do that, and they're telling me I'm wrong, I'm bad that that's not right, that I have to do it this way or I have to hold this back or I can't feel that, or I can't, you know, all of the things, even gifted testing at school, his teachers tried to keep him out of gifted, even though his IQ was high enough, but because he was cocky. [01:00:17] Speaker B: Right. [01:00:18] Speaker C: And again, that's rigidity, that's not cockiness. So I could keep going and going. [01:00:23] Speaker D: Yeah. We could also set the Context of the 12 year old thing with what Carnsville did. [01:00:27] Speaker C: There was. There was a lot, a lot there. But it was when we discovered masking and that's when things changed. That's when he went from really anxious and uncertain to really understanding these strong behaviors as a strength. And he really started to flourish. There was a number we found his sport with swimming, the sensory benefits in swimming were incredible. And like everything was just amazing from there. And we went from being concerned that he wouldn't be able to drive to now he's a senior at Yale. So. [01:00:59] Speaker B: Yeah, you know, you brought up the mask and I think this would be a good time to talk about that a little bit to give context for listeners who might not be familiar with this. Social masking is something humans do to fit in. Right. And we all do this a little bit depending on the situations we're in. We're a different person at work than at home. Right. But when in the context of autism, this can take on a different meaning. Masking is very complicated, but it can generally be defined as two things, right. We have, on the one hand, camouflaging, which is someone just suppressing who they are to fit in. Just like a camouflage pattern or like Homer sense him backing into the bushes, right? Like, it's just we are not like showing who we are, we are suppressing. And then the other aspect of masking is compensation, Right. Or over compensation. Right? So this might look like if you are autistic and you struggle with understanding social cues, you might memorize scripts to help you with that. Or, you know, this can get really tough for people. They can develop things like substance use disorders, Right. And the substance use disorder is the compensation. I feel like I need to be a few drinks in before I can be okay in this social situation. Right. Or an OCD or an eating disorder can also be something that can be understood in a way through that lens of autistic masking. It's something someone does to try to get control, to try to compensate what they're feeling inside. So, Evan, you know what has been Your personal experience with autistic masking. [01:02:48] Speaker D: There's been a lot of things going throughout it, as we've talked about a lot of, like, the camouflage. And I think we've went over that decently enough in detail. So talking more on, like, social masking or social preparing. There was a very specific part where moving into Yale, moving into this new college, understanding who exactly I was, what that even meant, since I also didn't really fit into a mold of any sort of type, you know, it was kind of hard to quickly describe myself in a few sentences in one of those ways. And moving into that with alcoholism, I had this really bad phase where I thought that that would be, like, a path to where it, like, strip back all the complicationists and just, like, figure out, like, kind of throw myself against the wall, figure out who I was. And this created, like, a year where it was, like, really rough a month. Yale's, like, had a really bad, like, not really bad, but like a really strong party scene on top of that. So then it became like a lot of nearly every weekend, first year at Yale, trying to throw myself against these parties, try to figure out who I was. And it ultimately wasn't really that great or working or any sort of way, obviously, but it's hard to figure out who you are. And I think a big part of it. Have you heard of spike theory before? [01:04:03] Speaker B: Can you just explain spike theory for our listeners so they can. Yeah. Understand what it is? [01:04:09] Speaker D: So spike theory is kind of a concept to where how people originally immediately approach someone is that they get a few key aspects of a person and kind of store that in their memory. And someone could be like the rural guy who's into guitars or something like that. And that's how you can kind of zip file a whole person. What I've been finding and have been learning a lot through the years is that autistic people don't really process people that way. Like, for me personally, I learn as much as I can about a person and go very details first and just kind of pour through and try to build a holistic image the first time I meet someone ever. And then I also have that own perception of myself. Like, I still to this day, can't really, like, conceptualize one sentence along the way. But with that and finally understanding that that's how neurotypical people approach people, I was finally able to understand, okay, if I wanted to mask in a system, because we ultimately live in an ableist society and we're trying our hardest to fix that. But you need to function is that I could simply just. I don't have to suppress the parts of myself that I don't want to, but I could lean into a few parts and that if I'm in a social situation, I can lean into being maybe a bit more cocky or a bit more like incendiary, or I can kind of lay back and just kind of stay quiet, stay passive, try to understand what's going on. And I can switch between those different priorities in a different way. And then through a lot of trial and error, you can kind of find a way to function without suppressing yourself in a weird way. [01:05:46] Speaker A: Yeah. [01:05:46] Speaker B: And I'm glad you brought up that transition from high school to college. I wanted to ask, is there much of a difference between high school and college in terms of accessibility? I'm thinking of listeners who might be about to take that transition themselves, you know, and thinking about what they should know going into that transition. You know, is there anything you wish you would have known? [01:06:06] Speaker D: Absolutely. So there's a lot of weird ways because at least between Yale and high school there's like one really weird dichotomy. For one, colleges have a lot better of understanding of how to give accommodations and like what's available, what's there, whilst high schools generally do not. And it's like very rare to get much unless if you're coming from a good high school. On the other hand, high schools are very much comfort first accommodations, from how I've heard it explained, where it's like focusing on making the student as comfortable as possible if you can get access to the accommodations. However, colleges are very need based. It's only if this person needs it will you get this accommodation. So it becomes this weird strain to where you're coming in. It's like, oh wait, there's so much more resources and there's so much more that can do. But they're also so much harder to get at the same time. So I'd say that's like one of the biggest differences. And also if you're coming from a rural area, a lot of the struggle is learning that things existed. I didn't know that there was extended test taking time this was ever an option or I also didn't know that you can get meal accommodations or many, many different things. Even emotional support animals were kind of a foreign concept to me in a lot of ways. But at the same time it's really, really difficult to get these accommodations. And there's a lot of times where I've had many struggles within the college Accommodation system where I was even told by the main woman overseeing it that I seemed. What was it? [01:07:34] Speaker C: You don't seem autistic. You don't look autistic. [01:07:37] Speaker D: No. Yeah, it was a bit like that. But it was like, you seem very well adjusted for an autistic person. And then every thing that I was asking for was denied. And then I was only offered, like, extended testing time when I also said, like, I don't need extended testing time. Tests are like, the one thing I can deal with. The rest is where it's hard. So there's a lot of fighting that's involved in it, but there's also so much more to fight for. In a weird way, it's a strange experience to say the least. [01:08:04] Speaker B: And I'm thinking about how in order to get these accommodations from your school or your work workplace, you often need the official diagnosis. Like the little piece of paper, right. That said, getting that can be like climbing an enormous mountain, mentally, emotionally, financially. There's a statistic about American health care that says something like 57% of Americans don't get it because we just can't afford it. Right. Can't afford it because, you know, we don't have the insurance or because we can't take off work or we can't. You just go through these, you know, wild goose chases again and again. You know, Shannon, I wanted to ask you what has changed since the early 2000s in terms of the diagnostic process, if anything, for autism and, you know, if you have any advice for families who are sort of navigating, seeking diagnosis today. [01:09:09] Speaker C: So a lot has changed, but not a lot at the same time. So specifically in Pennsylvania, prior to 2018, I believe it was only psychologists and MDs, PhD level that could legally diagnose somebody with autism. And so it created these really, really long wait lists. So during my master's degree, I actually went to Harrisburg to advocate with legislatures, to educate them on my experience in navigating the diagnostic processes for autism. And my son and I really pled with them to understand how challenging it was. And we were doing that so that licensed social workers and counselors would have recognition of our licensure in the state, because at that point, anybody could say that they were a counselor. You didn't have to have a bachelor's degree or a master's degree. Anybody legally could. Could claim that. And so there wasn't any protection for folks. You could go to a Joe Blow and get AKA a diagnosis, but then that diagnosis wouldn't mean anything. But you were also Getting some really dangerous folks practicing things like ABA without any real vetting certification or licensure. So that was the first part of that. That the second part of that was to not only protect the license, but it was also to allow us to provide diagnoses and open those doors so that, you know, licensed social workers and counselors, we go to school for many years, we do years more practice under supervision to become licensed, and we get extra credentials to provide a diagnosis we are very well equipped to diagnose. But at that point, it was not recognized. And so in 2018, they did pass a law. But even though we're seven years, six years away from there, we're almost eight years from when that law was passed. You see a lot of practitioners that are hesitant to either get the extra training or don't really understand that they're legally allowed to do these assessments and these diagnoses. I think that the other barrier for practitioners to, to take that on is that it is an intense process. And ados, ADOS is still considered the gold standard for autism diagnosis, but it is, it is incredibly cost prohibitive to get that certification. I think it costs, it used to cost, last time I looked into it, something like $5,000 and years to get that certification. When, again, it doesn't have to be that complicated. There's some really great tools out there, and a lot of it does come down to clinical judgment. There's one test that you can go through like you do in a magazine and say, yes, no, yes, no, yes, no. Oh, you have autism. There's a lot of gray areas there. And so if you're looking for a diagnosis for yourself as an adult or your child, make sure that you interview some practitioners and you really understand their approach. Because the diagnosis are often missed because of masking. A lot of people don't even realize that they're masking. They don't know what's under the mask. [01:12:24] Speaker D: They. [01:12:24] Speaker C: And so I know myself, I've really taken a strength based approach, like, tell me how you navigate this world. Tell me what you're good at, Tell me what's hard for you. But more so, how have you figured out how to crack this code? And that can tell you a lot about what a person's symptoms are and whether or not they have autism. Right? [01:12:45] Speaker A: Yeah. [01:12:46] Speaker B: And, you know, I now have some experience doing not the autism assessment, but the ADHD assessment for Mountain North. And one of the first things I noticed about it was how it is asking those deep questions about what's under the surface for People, which is something I appreciate about the assessment. And I know it gets clients to open up and really talk about their inner world and, you know, how they have been navigating life. [01:13:12] Speaker A: Right. [01:13:13] Speaker B: And again, coming back to the limitations of the medical model and aba, which looks at behavior. [01:13:20] Speaker C: Right. [01:13:21] Speaker B: But, you know, there's also a whole inner world underneath of behavior. [01:13:25] Speaker C: Right. Because if you look at a traditional ADHD evaluation rate, it's going to say, well, do you lose things a lot? No. Do. Can you sit in your seat for a long time? Yes. But it might be missing the fact. No, I don't lose things a lot. But like, Evan, we chained everything to his backpack, right. And he had reminders and alarms to double check that he had everything. So while he got to a point that he didn't lose things all the time, he did a lot, lot of work underneath the surface to make sure that he didn't lose those things. Yeah, I can sit in my seat, but I'm tapping, I'm drawing, I'm looking around, I'm. Whatever, Right. And so, like that, those simple questions, like you said, don't get into the inner world. They look at the outside behavior, but they're not looking at the nuances and what it might take for somebody to achieve that. And just like the disabilities person at Yale saying to Evan, like, you're really well adjusted. Yeah, well, he's done a lot, a lot of work so that he can transition to a whole new schedule every four months at college. Right. Like, there's a lot that goes into him being well adjusted. That doesn't mean that there's some things that might make it a little easier for him, you know, so that he didn't have to put so much energy into being well adjusted. Right. [01:14:40] Speaker B: On this topic of diagnosis and like, understanding our own behavior and what it means, making me think of how much the Internet has impacted, you know, how we see ourselves, you know, and how we understand this. So, Evan, I wanted to ask you if you could talk about how online resources, information community, impacted your autistic experience. And also if you had any advice for people who are looking at information about autism online and trying to filter out between what they can trust and what is just slop or useless or wrong. [01:15:26] Speaker D: So there's a lot for this specific topic. For one, we're at a very interesting state in the Internet landscape with how autism is represented. Like, we were seen with kind of like the silver lining with like. Like RFK's push with Tylenol and all this other stuff. We've seen this huge uptick in autistic creators specifically within like social media. And you can have like one of my favorite like electrical engineering youtubers is like very openly autistic and talks about it and is like an older person with autism too. So it's very interesting to hear his perspective. And you're just seeing it everywhere like even TikTok and like Instagram and all those types of things. So having those is like a way if you need like, like empathy if you need someone to like immediately relate to or something communicate to. I think finding any of those communities is really great. Whether they're even like subreddits or blogs or anything made by autistic people is always immediately a great way. Since it's a spectrum. You can figure out how you do relate and how you don't relate and why that might be the case and you can really create a conversation out of it, which I think is a huge part since sometimes you're just just going to disagree with some resources. And that's good because then you understand yourself better, you understand your situation better and you understand your interactions with the world around you a lot better. And so I'd honestly think like just using the Internet as a resource to connect with other people, especially whenever it's really difficult to connect face to face with autistic people for many, many reasons, the Internet can be a great avenue for that, that. So I'd say if you want to push back the past the slob and want to push past all that, I'd say just go around it and just at least start by listening to autistic people first. And that can be a great way to really just start to understand and feel like seen in a lot of ways. So that's a really huge part is like understanding like oh, I'm not broken because of this. It's just works like this and there's many. You can get strategy shared. One of my favorite like smaller subreddits that I like to peruse is just like literally just called bar slash autistic pride. And it's just trying to be proud of neurodiversity and like how it impacts us and how it changes us while still accepting that it can be really difficult. [01:17:48] Speaker B: Yeah, there's a lot of nuance, you know, in that and I think think finding community is so important with this. Right. Because no matter what someone's going through, feeling alone in it will always make it worse. [01:18:03] Speaker C: Right. [01:18:04] Speaker B: So Shannon, is there anything you to add? But maybe from the point of view of parents, right. Who are looking online. [01:18:12] Speaker C: Absolutely. And I would say. I would echo what Evan is saying. Like I mentioned it was Autism Speaks was kind of my first resource, and I did not realize how inaccurate, ableist, and punishing that that was until I. Evan, enlightened me, and then I started finding actually autistic. But I think what's important and what can ruin those spaces for people is when somebody like myself, like, I'm a therapist and I'm a mom, and I work a lot with autism, but I don't personally have autism. And so I see a lot of times we're going to those spaces for resources so we can understand what it is like from a person's perspective. Like, it was invaluable to me as a mother of a child with autism to hear the voices of autistic adults, right. And what they were experiencing. Because now they have education, now they have the words. Now they can describe what my son may be going through, at least something adjacent to it. But what I see often then, it is moms of kids with autism or people therapists that believe that they're experts on autism speaking up in those spaces. Like, I think it's very important that if you go and you're going for a firsthand perspective, that you take a step back and realize that you are not the expert in that space, and that's not what that space is for. You're there to observe and learn and to be and to respect that. You don't know firsthand. Right. You don't know what that feels like inside your body. But you really, really need to be in those spaces as the curious and humble observer. Right? Ask questions, that's fine. But you don't know better. And that's not what that's for. Because even one autistic person to another doesn't know better from what their experience is. Right. [01:19:59] Speaker B: Lived experience counts for so much in these spaces. And it got me thinking, right? Because earlier, Shannon, you were talking about how you were doing your best with the resources that were available in the early 2000s, and now you look back and cringe. I'm curious how the two of you repaired your relationship after that, because I think there's a lot of parents with adult kids who are looking back and are like, I wish I didn't do that. And trying to have a relationship with their kids now, that feels authentic. [01:20:37] Speaker C: I'll probably cry. But this is one of those things that. And I think, especially with him going to college, that the first couple months, I feel like every day There was overwhelming grief for things that I know better now, that I could have done better by him. And then watching him navigate the world as an adult, like, I know some of the challenges he's having is because of my well intentioned interventions or maybe my lack of emotional regulation on the hard days. Right. And so there's been times that he's called me where he's like calling, he's upset that he saw this interaction between a dad and their child and it's like really upsetting him and he doesn't know why. And I'm like, it's because I did that to you. That's why. You know, like, you're triggered because that's something that I put you through. And he's always been there for me, probably more than he should have had to have been. Like, he's always been my number one supporter. He's always been one of my, like, closest people in the world. Like I said, we. He has two younger brothers, they're significantly younger than him. And I was so young when I had him, I feel like he was kind of on my hip and I was like, every time I was learning to adult, it was like I was bumping his head off a cabinet, being like, oops, sorry. Right? He has given me a lot of grace and a lot of love and a lot of forgiveness and he verbalizes that. Like, I try to have open conversations and apologize and explain. And like I said, he's always, he always tells me he knows that I did the best that I could, you know, doesn't make that go away. And I do. There's still some challenges, right? So now he's in a place where he can, where he can really control his environment and the things that he's exposed to. And then he comes home and his younger brother wrestles. And so that's like a sensory night air. And it's important to him. He keeps showing up and he keeps going because he wants to be there for his brother. But I know it's taxing on him. And so I try to create spaces where it's not as overwhelming, where we maybe sit somewhere, it's more quiet and he has his headphones and stuff like that. But I know that there's been some tension around those moments where he feels like I'm asking him to mask when I'm saying, like, I'm not asking you to mask, I'm just asking you what can we do? Kind of thing. So whenever you're navigating this, the more humility and humbleness that you can have to again say, I don't know, I don't understand, like, tell me what you need or how I can do this or how can we work together, you know, kind of thing. But I do. I don't know about Evan, but I feel like in a lot of ways we're closer now. So after Evan had that disclosure when he was 12 and I started really looking at the actually autistic stuff, I stepped back and I started working on understanding and supporting him, meeting him where he was at and learning how to really amplify his strengths and to see even the things that I felt like were challenging to understand them as strengths. Our relationship got a lot better. Evan became a lot happier. He became a lot more self, self assured and confident. And I was able to be a support and a guide instead of like trying to control or change him or his life or what he needed. So I think from there we got closer. But every parent, you know, it's really scary when your kid goes to college. You feel like you're losing them. But I feel like in a lot of ways we've gotten closer since he's went to college. There's a lot more mutuality. We do still come up on struggles. One example is when we go to wrestling tournaments. His younger brother wrestles. Like, that's a sensory nightmare. And so I know we've been in those spaces before where Evan's gotten frustrated with me, feeling like I can't mask. Right now you're asking me to mask and I'm saying I'm not trying to ask you to mask. I'm trying to ask you what I can do to make it easier for you. Because I don't want you to be uncomfortable. You know, like it's important to him to go and to support his brother and to be a part of this, this experience with our family. He wants to be there, but we have to. For me, I have to, you know, be very conscientious. And maybe we don't sit in the gym, maybe we sit outside or we make sure that he has his headphones and we make sure that we're interacting at a certain level. So it's not isolative because it can feel very isolating to be overwhelmed sensory wise, while you're in a room, you know, a building with thousands of people, you know, so we still run into those struggles. But I do feel like we've gotten a lot closer and I think it's going to be harder probably to forgive myself than it is for him to forgive me. [01:25:49] Speaker D: But and then for my advice, like, for someone who's even like beyond autism, who's felt like they've had a struggling time growing up and are now finding themselves as young adults and are trying to navigate those emotions, I think one of the biggest things that you can do is try to find your own footing first. It's very easy, especially when going to a high achieving place like Yale, where you find these extremely privileged people who have been either bottle fed their whole life or given every opportunity in the world. It gets very, very easy to feel like this, this deep seated unfairness and get caught up in that rage and get caught up in why couldn't this happen. But honestly, my best advice to those people who are feeling that way, it's best to find your own footing, to find your own responsibility in your own way. Because for me personally, I was able to find a lot more forgiveness when I was my own person, when I was able to have my own space, when I was able to, like, feel in control. Like, I remember very specifically within, I think, freshman year to where like, I had my dorm set up, which there's also nightmare stories about that, but where I was like, this felt like my first space where I didn't constantly have to feel like I was in fight or flight mode, that I didn't constantly, like, have to track everyone's footsteps in the house or anything like that. And it was at that point to where I could finally, like, process and put down a lot of the emotions and understand that if that kind of wells up again, I can tell myself I'm like, I'm my own person. Like, I'm controlling the situation. I'm controlling where I am at this point. Because I put in the work to build that life. I put in the work to now have an apartment and like, know what works for me and what doesn't work for me. And that at that point it's a lot easier to not feel, like, indebted or trapped or something like that. It's a lot easier to grow beyond it and then find that forgiveness. And then by the time you're at the end of that tunnel, it's. You've grown past a lot of it. So it's a lot easier to let go of it. [01:28:01] Speaker A: What you're talking about reminds me of the redemptive self, right? [01:28:05] Speaker B: Which is this concept from Dan McAdams, who's like a psychologist. And I think whether you're like the parent in this situation or the adult child, leaning into this can be a way of walking through It. [01:28:19] Speaker C: Right. [01:28:19] Speaker B: But something he says is that when you're trying to find yourself, you know, there's these four qualities of the redemptive self. Right. The person who is able to just access self acceptance. We're generative when we're in that state of mind where we want to improve the world or you know, just improve what's around us. You know, it doesn't have to be as lofty as the world. Right. We're sensitive, like we care about other people. We're committed to our values. [01:28:47] Speaker C: Right. [01:28:47] Speaker B: So we've done that work to figure out what matters to us. And we balance independence with connection, which sounds like that's part of what going to college has been about. You guys relationship now, you know, on that note, Evan, what are you working on now in school? Like what are you excited about? And yeah, just using this opportunity for like shameless self promotion. Like tell us what, what you're working on. [01:29:19] Speaker D: Yeah. So I've been doing a lot of different things to say the least. A lot of my current focus has been trying to figure out what to do post college in a lot of those ways, whether I'm applying to a lot of jobs in industry right now in electrical engineering. And I'm also doing a lot of my own research. A lot of like the interesting type hurdle right now is finding mentors within college and like within that space. Like currently Professor Manohar has been a great resource in a lot of ways. He's probably also neurodiverse too, which has helped a lot. Like finding neurodiverse professors in general has been really great for me in finding mentors. So I'm currently trying to go into a focus in chip design at the moment. So right now I'm researching in BCI work which is brain computer interfacing chips. So this is either chips that can monitor brain waves, monitor brain activity, communicate back and forth, either motor control or cognition monitoring. Kind of like the neuroptimal, which is the system that monitors brainwaves to then monitor focus in that way. And so working on a general purpose version of that device that can then be configured into many different ways, whether what application you wanted, whether you wanted motor control, where it's more you're disabled like physically and trying to control a robotic arm or if you're doing something a bit more stripped back and simple. So that's kind of professionally where I'm working on. Outside of that, a lot of my investment has been going into mentoring in many different ways. I'm currently hopefully taking a job as a teaching assistant within one of my, my favorite EE classes. That way I'm able to help guide other people. And on top of that, I am currently working as a peer liaison through the Student Accessibility Services, where through a lot of like, my frustrations through college and like trying to understand and trying to learn new things about me within life, a lot of ways I've been taking out that frustration is by trying to figure out ways that I could share knowledge to people that are going through it right now so they can kind of skip the whole crash and burn process that I found. So a lot of that is luckily Yale has a, like a peer mentor group system, so attending those have been very great. But I'm also working as a peer liaison, which is like a mentor for first years coming in who would like have registered disabilities through the system and helping them in ways that any way I can to navigate accommodations at Yale or navigate social situations at Yale, whether it's neurodiversity or any other type of individual invisible disability or even visible. [01:31:54] Speaker B: And it reminds me about what we were talking about earlier about like finding yourself right? And that redemptive self of just making what's around you a little bit better. Now, something that I've seen happen in families with neurodivergent children is it can start this sort of reflection for the whole family, you know, where they start wondering, like, are there places where I have been masking, might I also have a little neurodivergence? Or even if I don't, I'm watching my kid live authentically or struggle to live authentically. And now I'm seeing the places maybe in my world where I haven't. And are there some masks I could put down again? [01:32:35] Speaker C: I think Evan has been one of my greatest teachers in so many ways. We talk a lot as therapist. Is being strength based on. Right. But I think really in watching Evan's growth and development and being either a hindrance or a supporter of that, I've really learned that all of our strong behaviors, even if they appear to be some of the most negative disabling behaviors, are strengths. Right. That we are, we're constantly balancing on this double edged sword that on one side this thing about us can be this really wonderful thing, or on the other side it can be detrimental to us. And so within that, within helping him to understand his strong behaviors and strengths and how can he apply those as strengths? I've also done the same thing. Like I'm, I'm a terrible perfectionist. And it is something that has probably held me back in more ways than I can count in my life. It's almost like acceptance, commitment, therapy. I can't change this about myself. So the more that I can accept it and I can lean into it, then I can use it to catapult me forward. And then the disabling sides of it aren't as relevant anymore. They're not as impactful. Right. So there are several. Even just things like, I'm always running late. I've learned to really accept that instead of shooting it away or trying to put it into a box. And. And then I. I create my environment to be more prepared for that and to even embrace that. Right. So if people in your life, even people that work with you, know that you're always running late, then they understand, you know, they're. They're prepared for that. And you could be really good at what you do. People will deal with it. Right. Or they'll even welcome it because then they're less anxious about it all. So there's little things like that, but just a little shameless, kind of mom plug. Like I said with Evan, too, every time he's encountered a barrier, he's used that logical strength. Right. The more that he can break something down logically, that's how we've attacked the eating issues. That's how anything that he can process through that logical strength of his. So he'll encounter a barrier like accessing resources on Yale, logically break it down, understand where the department's biases are coming from, where the systemic inaccuracies or barriers are. And then he got a job doing. Working there so that he can change that system and help other kids. So he doesn't only fix things for himself. He does. He's very good at that systems process. Right. And understanding the. The full scope of the issue and then doing what he can so that he's paving an easier path for other people as well. And he's making that better. And that's another thing that I try to be inspired by and to take into my work and into everything that I'm looking at. Like, it's not enough for me to just step over, to climb over it. Right. Like, we have to beat it down for others to be able to. To not waste their energy on something that's not necessary. Right. A barrier that's not helping anybody. [01:35:39] Speaker A: Yeah. [01:35:39] Speaker B: I think often about how accessibility is the most important part of any service or treatment, because if people can't access it, then it doesn't matter how good the treatment is, because you know it's food they can't eat. So, you know. On that note, Shannon, could you provide some information for our listeners about how Mount north, your practice approaches the diagnostic process? I'm thinking of listeners who might be sitting there being like, okay, what could I expect if I reach out? And I am curious if I might have autism. [01:36:18] Speaker C: So again, from personal experience, like we've really learned through blood, sweat and lots of tears on what it means to be neurodivergent affirming. And again, if you're looking for an ADHD evaluation or autism assessment, you really, really want to make sure that they don't just say that they're affirming, that their practices are affirming. And so we work to be accessible by. From your first phone call, there's somebody that's there to walk you through the paperwork, through getting set up with your appointment. We have an app, so if you're not keen on talking on the phone, you can do all of your scheduling and communication through there. You don't have to like call and leave a message and wait and hold. But we also have really wonderful therapeutic admins that will help you fill out your paperwork. They'll do a zoom appointment if you need to, and then from there you get matched with an advanced therapist. A lot of our therapists have PhDs. Several of us have master's degrees with extra credentials. But you'll do an in depth evaluation that doesn't just focus on deficits. It helps to really pull back the mass to understand your day to day functioning, to understand what your experience is and to see if that does fit into neurodivergence and if it does, which label does that have? And then from there there's a ton of options to help you really understand your behaviors, understand how to apply your behaviors as strengths. Sometimes there's some rewiring of your regulation, of how you regulate your system so that you can think more logically and make more choices. Sometimes there's environmental interventions that you can use or like Eben, just understanding that you can dissect this like eating is really, really difficult and uncomfortable. So how can we approach that logically? Well, he got a certificate to be a nutritionist one summer when he was a young teenager and that really changed things for him. So understanding us at scientist did, and we can use that for adhd, for autism, for a number of things, to really understand how you function and what's your best. But getting a really good diagnosis comes with understanding not only what letters, what label you might have, but in what way are you masking? In what areas do you have difficulty functioning and trying to equate that and define that up, and what are your strengths to overcome those things as well? And so by the end, it can take anywhere from two to four sessions. And then at the end, you get a nice report and a really deep conversation about what that means for you and how you move forward. And there's all kinds of vitamins, medications, or just behavioral supports or differences of understanding that you can get moving forward. So again, you're not feeling disabled. You're able to advocate for yourself. You're able to. To look at yourself differently. You're able to really, really see what your full potential is if you were to take off these cultural pressures and all of these masks and all of these things that. Where you're trying to put a, you know, a round peg in a square hole kind of thing. [01:39:32] Speaker B: Thank you both for having this conversation with me. At this point, I want to ask if there's anything you guys wanted to get to that we didn't get to, you know, or anything you wanted to add to what we brought up. [01:39:45] Speaker C: I think that I just want to re. Emphasize the importance, like if you're a parent struggling through understanding how to support your child is to really be compassionate towards yourself and to your child, and to understand to really face everything with good intentions and meaning that your child has good intentions, providers have good intentions, you know, because that can help drop some of our initial defensiveness to protect, I guess, but maintain a critical eye. Like there's a balance between being critical and being humble and knowing that you don't know what you don't know. Right. And so I think that humility, when you're looking at your child and they're struggling through something, trusting that they're having good intentions in that moment and that they are trying as hard as they can. [01:40:39] Speaker B: Right. [01:40:39] Speaker C: While you're trusting yourself that you have good intentions and you're trying as hard as you can, but you just don't know yet. And just because it's hard, it doesn't mean that you're doing it wrong. But you may need to pivot some right. It won't always be so hard, but you will find your way. [01:40:56] Speaker B: I think a big challenge for a lot of people who are parents in this situation is sitting in the uncertainty. And if you think about it, that's a very important skill and an important skill to model for the kid who is going through it too, and remembering that you don't have to know everything you don't need to know what quote unquote causes autism. You don't need to know all of that yet. But if you are present and you are supportive and empathetic, you don't have to have all the answers so much as, you know, showing up with that open heart, open mind, and with that, [01:41:36] Speaker C: that ability to take care of yourself during it because there is nothing helpful about you, AKA helping your kid when you are dysregulated. Right. And so you have to be at peace and calm and humble and having an open heart before you can accept them to accept anything from you. Right. And. And you can again be making things disabling if you are not centered while you're moving through it. And I a big ask, but 90% of the time people don't. We have people bringing their kids to us, like, just fix them. I'm worried about them. I'll take care of myself later. Like they're the priority. But the reality is, is that if we can take away 50% of a parent's anxiety, if we can help them regulate themselves, 50% of the time, 75% of a child's anxiety goes away without making any environmental or behavioral changes. Right. Our kids are our emotional barometers. They can feel what we are feeling before we do because they are dependent on us for survival. And so the most important thing is you being well and centered so that your child is not learning new skills like anxiety and neurodivergence go hand in hand because it's so hard to navigate this world and then the normative and all of the expectations and all of the pressures. And so if you can keep yourself well and regulated, then your child is so much safer and learning how to navigate and overcome challenges. So please, if you're a parent listening to this, take care of yourself first because you can create so many more opportunities for your child. And by you modeling, you taking care of yourself, by you getting help, then all of a sudden there's nothing wrong with your kid. This is normal. We take care of ourselves. We love ourselves. We learn how to use our strength, strengths to overcome challenges. We have bad days and that's okay, but we can handle it. Right? And that's what they need to see from us, no matter what they're struggling with in the moment. [01:43:39] Speaker B: Wanting to begin to wrap up here though. I feel like I could talk to you both for hours and hours. But thank you, Evan. Thank you Shannon, for coming on the podcast. [01:43:48] Speaker D: Thanks so much for having us. [01:43:50] Speaker C: Yeah, thank you, Claire. This was wonderful. [01:43:52] Speaker D: Sam.