The Loudest Girl in the WorldSo Lauren finally got her autism diagnosis. But what the hell did that even mean? Where is the neurodiversity roadmap for someone diagnosed in their 40s? Turns out, there isn’t one. So Lauren has to make it up on her own. It’s time to do a deep dive into the world of autism. Which in itself is very autistic. Let’s get our research on!
Pushkin. A little content warning. We get into some pretty big emotions and tears in this episode, plus some possibly upsetting descriptions of psychiatry of your so keep that in mind when listening. Okay onwards. When we left off with episode three, I had just opened my diagnosis from doctor Nadlie. You might remember it wants something like this. Obviously, I didn't know what to make of the diagnosis, mostly because I couldn't read it through my giant rain dropped tears. But after I finished sobbing into my dog's I was able to see what the assessment actually said. Diagnosis autism spectrum disorder. Okay, so I'm autistic, got it? But then I kept reading persistent deficits in social communication and social interaction across multiple contexts Level one restricted repetitive patterns of behavior, interests, or activities Level one. Lauren fulfills the DSM five criteria for a diagnosis of autism. Her psychometrics show distinct correlations with autism. Wow, that's a lot of confusing words. What did any of them mean? And furthermore, who decided that this is what autism is? Apparently the DSM five people, that's who I'm a fact finder. By nature, information helps bring order to my world and gives me a sense of control. And so to manage the bigness of this diagnosis and all it entailed, I was going to have to go into reporter mode and find some facts. And man, there were a lot of facts. There's the clinical knowledge of the autism spectrum and the history of the condition, plus the almost infinite ways the diagnosis can present itself, as well as all the different interpretations of autism in the media. Initially, I figured I could run all that through the filter of my own experience and out the other side would pop a whole new concept of who I was. So I started making a list. I was going to go through all the literature and movies, documentaries and TV shows, etc. Where autism is even mentioned. My info tank would be filled up. But first the DSM, or the Diagnostic and Statistical Manual of Mental Disorders. Doctor Nadley's diagnosis follow the standards set forth for autism in the DSM five, but I wanted to go back to the source, the og manual, the DSM one. The whole process of doing the diagnostics and waiting for the results and trying to unpack them was like going through the emotional spin cycle. I was wrung out. But if I was going to attempt to understand this diagnosis, it was important for me to know who set the standard, who determined the clinical definition of autism, and why should I listen to them. Historically, our collective understanding of the brain and its inner workings has been dodgy at best. It hasn't exactly been sophisticated or accurate, or based on anything other than the observations of some mustache twirling alienists, as evidenced in this nineteen fifties educational film from the Ohio Department of Public Welfare. Because of mental illness, the brain's ability and energy of American in twenty will be lost. Metal illness will take a toll of talents and beauty, No, not beauty, anything but that because people hate and sorrow and fear. One in every twenty will go to another city, a city a state hospital ornamentally ill, where psychiatric patients were locked away in brutal gulags, diagnosed with very unscientific conditions melancholia, hysteria, mania of all kinds, most of which were probably treated with leeches or bloodletting or some other horrifying Victorian restorative. So when the DSM first landed on doctor's desks in nineteen fifty two, it represented a sea change in our understanding of psychiatric and neurological conditions, at least on paper. It's standardized conditions and their symptoms, and it professionalized diagnoses, which is not to say that people given these diagnosed sees were treated better, because they weren't. The very first DSM was a slim, leather bound volume, just one hundred thirty two pages. It described conditions ranging from chronic brain syndrome associated with mongolism, to inadequate personality disorder to sexual deviation, including but not limited to fetishism, transvestism, and homosexuality. But don't worry, there were PSAs for that. What Jimmy didn't know was that Ralph was sick. The sickness that was not visible like smallpox, but no less dangerous and contagious, a sickness of the mind. You see, Ralph was a homosexual. No, not Ralph anyway, the DSM became like a bible for conditions of the brain. But curiously, that bible only made two brief mentions of autism and didn't bother to explain it. It took nearly thirty years since the very first DSM for autism to get its own entry in the manual, and even then it only addressed infantile autism, which we heard about in the previous episode. Finally, in nineteen eighty seven, the DSM got wise. The big ups at the American Psychiatric Association decided that both kids and adults could be autistic fun so the organization coined a new diagnosis, autistic disorder. Then in nineteen ninety four, the APA added four subcategories to autistic disorder. One of those was Asperger syndrome, which was viewed at the time like high functioning autism, an imprecise term that we don't really use anymore because what does it really mean to function and who's actually defining it. But then in twenty thirteen, the DSM was revised again. Now we're at the fifth and most recent iteration with a couple of edits since, and in this version there is no Aspergers, no infantile autism, no childhood schizophrenia whatever that was. There is only autism spectrum disorder, or ASD. Our understanding of autism has always been pretty fuzzy because the definition of autism has itself always been pretty fuzzy. Take this explanation from the nineteen forties by psychiatrist Leo Connor, one of the earliest autism doctors. We have two specific symptoms that always have to be present in order to justify the diagnosis. They are extreme aloneness from practically the beginning of life, and what I call a desire for the preservation of sameness, which is not at all the criteria that's used to diagnose autism. Now, in the history of the word autism, there has never been a fixed definition. It's always been a moving target. And that kind of sucks because when I originally started this journey, I thought a diagnosis, one beautiful word, would explain things, simplify them, tell me why it was so weird, maybe even help fix things for me. But after I got the diagnosis and started learning more and more about autism, I realized it could never be that simple. Autism and all its many tendrils defy clear understanding. With this diagnosis, this word, I was descending into some pretty cloudy territory. You're listening to the loudest girl in the world, who is not the lady behind you in line at the grocery checkout. It's me, Lauren Ober, The Loudest Girl in the World is a show about finding yourself broken in a pretty dark place and emerging from that place a mostly glued back together our person. So with my diagnosis, I had a word, well, I guess more like three autism spectrum disorder, and those three words were embedded in a whole paragraph that gave name to who and what I was in very clinical terms like level one, which just means subtle autism that requires minimal support. But stowed away inside of doctor Natalie's one paragraph diagnosis was a crazy quilt of feelings, mostly bad sadness for little Lauren, who might have had an easier time of things if only anger at being forever misunderstood, relief that a question I had about myself had finally been answered, but also a sneaking sense that I was perpetrating some ornate fraud, that doctor Natalie got it all wrong, that I wasn't actually autistic. Now I had a word. Instead of obnoxious, rude, or loud, the word was now autistic. But what did that word even mean? And how was doctor Natalie's assessment going to help me? As I moved on in my life. This is just a difference in brain wiring. And then sorry me, I interrupted before we please, you're going to have to interrupt one you're gonna be in trouble, so good, before we get sort of too far down the line, I'd like a working definition from your perspective of autism. Spectrum will site condition rather than disorder. But what is it? So in terms of autism, I'll give you my definition. One of the best ways to define autism is by what it's not, because again, we have these tropes in society of Rainman and Sheldon from the Big Bang theory, and children lacking sociability, narcissistic, lack of empathy, and those are just absolutely incorrect assumptions that the media really sells. Remember, doctor Natalie is autistic herself, and her understanding of autism is that it's largely positive and often inherited. So thanks mom and dad. What autism is It is a difference in brain wiring and that we are optimized for certain things. It is genetic. It's got an eighty percent genetic component. We have these specialized skills in the brain. We've got this localized hyper connectivity. And what that does is allows us to be excellent lateral thinkers. Basically the ability to solve problems in indirect, creative and unexpected ways. Carry on. You know, many of us are autodidacts, people who are self taught. We tend to be very intelligent. And I would also include in that we whire varying levels of support, and I think that's something that people misunderstand. And so we do have all these great things. But like I always say to people that if nature gives something, it takes something. But what doctor Natalie is telling me is all the positive stuff that she associates with autism. Autistics are creative problem solvers and great systematizers and smart and clever and teach themselves all kinds of cool and weird things. But that's not what the DSM sets. The main thing is that the DSM talks about these as deficits, right, and I call them differences. So it's a difference that optimizes us for certain things, which also means that there are things that are less optimum for us. Right, So neurotypicals are optimized for socializing and we're optimized for work. We're literally specialized for skills. So if you think of us more as a specialist, whereas a neurotive it was a generalist. Hm, I feel anything but a specialist, unless by a specialist doctor Natalie means someone who melts down at the sight of pulverized roadkill on the side of a highway or panics at the appearance of a caper on her plate, in which case, yeah, I'm real special. But as I talked to doctor Natalie, I began to think that she was a little bit of an autistic exceptionalist. You got autism, you have a superpower, rather than autism just being a difference in brain wiring. The end, Doctor Natalie seems to see autism as a thing that makes autistic people just a wee bit better than non autistic people. And I mean I get that. As a gay person, I've long held the belief the gays are better period. Just kidding. I think it's just a stance that people with marginalized or minority identities use as a bomb against a world that doesn't always feel very welcoming. But I'm not a point in my neurodivergent journey where I feel exceptional, where I feel that this designation is something to be celebrated. Hell, I only just got the diagnosis. I'm not ready to be an autistic superhero, the loudest girl in the world, able to talk bad guys into submission, so long as she doesn't have to eat eggplant or wear scratchy wool. Some of what doctor Natalie was saying really resonated with me. Autism doesn't have to be a deficit. It can just be a difference. And my brain does sometimes feel more like a workhorse than a party animal. But a few of the things doctor Natalie said I didn't really vibe with. What if I don't want to be a superhero, what if I just want to be incidentally autistic? I called doctor Natalie back to get her thoughts. You're the same person who you were before. Yeah, the thing that you're going to do now is be able to better understand your superpowers and better understand how to manage your kryptonite's. But I guess I just wasn't totally sold on this whole idea. For one, the Superman reference doesn't quite land, mostly because I'm not a comics person. Also, it's just hard to assign that many positives to the way my brain works, especially because it's been problematized for so long. I haven't exactly been celebrated over the years for my endless talking, or my blunt opinions, or my sensory weirdness. But maybe what doctor Natalie was talking about more broadly was reclaiming the popular narrative about autistic people that we're unempathetic automatons, incapable of making meaningful emotional connections with people because we're too busy memorizing world flags, taking apart the vacuum cleaner, or doing calculus for fun. I decided to call my girlfriend Hannah for a gut check. I just needed to talk some of this out. I see why the idea of the superpower is so important for people, for the idea of finding this thing that makes it good. Like these are the ways in which autism isn't a problem, It's just a condition. It's just just a neurological difference. F why I I'm cleaning my apartment while we're talking, which is why everything is rattling around, And so you look at this sort of traits of autism, and right now I'm seeing is the ways in which they are negative of parstablish you know, and I think that I haven't quite figured out the ways that this would be a good thing, you know, like I might not be able to have people touched me in a particular way, but I have this other thing that makes it positive. You can't be like, oh Lynch sent Johnny was, you know, if only he weren't like this, he would be perfect. Can't be like if only this, then this m like I couldn't say, like Lauren would dope the Holy shows not just that's probably true though it's actually college on yourself. Thank you for the affirmation my truest love. After talking to doctor Natalie and Hannah, I was still feeling sad and angry and confused. Also, I didn't want to be an autistic superhero, not even if it came with a cute outfit. I thought my diagnosis would be my answer, but it wasn't enough, mostly because it just brought up more questions, not just questions about the science behind autism, but also about my place on the spectrum. All the science and official definitions and doctor Natalie's superpower stuff were not helping. I wanted it more on the ground understanding of autistics. What did the culture think of us, and how we moved through the world, and how did autistics view themselves. I wanted to see myself reflected back at me. So after the break, it's time to hit my personal autism library and get my read on. In addition to being a charming and delightful podcast host, I am also a journalist. I love diving into information. Naturally, I was trying to learn everything I could about autism, which, FYI, is very autistic. I wasn't quite ready to plunge into the very active online autism community, but I was ready to do some heavy reading. I read books about autism and feminism, and books about autism and blackness, and books about autism that never should have been written at all because they were so boring. I read memoirs and historical deep dives and cute little graphic novels. I dogeared and highlighted and scribbled in the margins of so many books. And I also learned some fun facts about the Oscar winning movie rain Man. The nineteen eighty eight film is perhaps the most famous representation of autism on the big screen. The movie star Dustin Hoffman, plays an autistic man named Raymond Babbitt who lives in a mental hospital and has recently inherited his father's fortune, which is cool until his younger brother, Charlie played by Tom Cruise, comes on the scene and absconds with Raymond in an attempt to snatch the inheritance. It's like a disability buddy comedy road movie with casinos and Lamborghinis and a non autistic actor playing an autistic savant. Good morning coffee, Yes, Semi Cris Shally dips dips salad for six nine two. How did you know my phone number? How do you know that? Said, read the telephone book Class NAC tips Sally for six one o one nine two. He remembers things, little things, sometimes very cleverable. I'll be right back. In order to prep for the role, Hoffman got a job as a nurse's aid at the New York Psychiatric Institute. He played ping pong and scrabble with the patience and did the occasional pan oversight. All cute. I guess by now my brain was exploding with autism trivia, some fun, some not so fun. But all this optimistic book learning didn't exactly have the desired effect. Learning the facts of autism didn't make me understand any more. About myself in a way, it had the opposite effect. I was hardly seeing myself in any of what I was reading. Maybe it would be different if I dipped a toe in the cool waters of autism social media. So I started following people who used the actually autistic hashtag on Twitter, and I tried watching some YouTube videos. Ted x seemed to have an unusually large collection of female autistics talking about their experiences. By myself autistic. As you can see, you can't tell from looking that I'm autistic. I had always had autistic traits and struggles, but I just thought I was weird. Imagine someone on the autism spectrum. You probably didn't imagine someone who looks like me. At first, this diagnosis was not easy to hear, but then something shifted got Asperger's for me. It's just the way my brain functions and how it functions is very overwhelming. If it was so lovely to hear all these autistic women talk about their own experiences, like yeah, girl, I see you. But then the deeper down the rabbit hole I went, the more I got caught up in the stereotypes, and I just couldn't see myself in any of them. About people who are nerdy, intelligent, socially awkward, socially isolated, and who are obsessed with computer games, but who can't look after themselves. Yeah that's not really me. Where was my place on this autism spectrum? What if I was just an autistic imposter? Did I even have an autistic special interest? Of course I had to talk to Hannah about it. I'm like, I'm forty two. I don't have an interest in video games or fantasy world pre sci fi speculative fiction. I don't. I don't feel like you can't find a place where you belong. What's like, where's the place? Do you know what I mean? This is what happened. You live with this, summarize Oh what you're like, Okay, so now today I am autistic. Like here I go starting up the stick lie and you're like, oh, so I'm going to be at the Comic Con convection. No, I like, also, I'm going to play video games. I have to get myself a base. It had a switch, so you cagle switch and you're like, fuck, man, that's expensive, you know, So you look for off brand Nintendo like Nintenda or something, and then so you try it out. Then you're like, I can't like I can't even get Mario up one fucking ladder. Yeah, and what Hannah is so expertly doing here is showing me how utterly ridiculous I was being. I do not have to be a basement dwelling gamer in order to inhabit my autism. Also, nothing wrong in the slightest with basement dwelling gamers. I just haven't played a video game since nineteen ninety eight, when Super Mario and Duck Hunt came as a Nintendo Super two fer. So if gaming was a requirement for my neurodivergent membership card, I surely wouldn't qualify. Social media felt like was full of gen zs or nerds and popular media. Well, that's a real x bag when it comes to representing autistic people or really disability writ large. Up until very recently, autistic characters were played by non autistic actors are Pala, Dustin Hoffmann, Leonardo DiCaprio, and what's even Gilbert grape Claire Dane's any biopic Temple Grandin. I mean, sure, if Gillian Anderson or Julian Moore want to play autistic me in the movie version of my astoundingly mundane life. I'm here for it, gun for that, Oscar Ladies, But for real, I wasn't really seeing any autistic representation that felt relatable anywhere. Maybe that's because most media portraying autistic people isn't made by autistic people, shocker, so it's hard to tell if what you're going to get is the real tea or just some contrived pap made by slash four neurotips. Of course, I watched Rainman Nam the Temple Grandin biopic and saw almost nothing now was relatable. But then I saw Hannah Gadsby, and Hannah Gadsby was someone I could get into and who I do get into after a break. Hannah Gadsby is a genius Australian comedian who made waves in twenty eighteen when her stand up special Nanette came out on Netflix. I think it's fair to say that she blew all our minds. At least she blew my tiny mind right on my little leer holes. Here was someone I felt a deep kinship with, and not just because we're both gay and I think I'm hilarious, because I felt I could relate to her particularities. My favorite sound in the whole world is a sound of a take up finding its place. Also in Gadsby's sophomore special called Douglas, she directly addressed being autistic. I hadn't been diagnosed yet. Autism was only on the periphery of my consciousness. But when I heard this, boy, howdy, did it resonate. I have what's called high functioning autism, which is a terrible name for what I have because it gives the impression that I function highly. I do not to give you an idea of what it feels like to be on the spectrum. Basically, it feels like being the only sober person in a room full of drunks, or the other way around. Basically, everyone is operating on a wavelength you can't quite key into. When I saw Gadsby perform this live well before COVID or my diagnosis, I just kept saying out loud, yes, yes, yes, yes, yes yes, because this is always how I feel in social situations, and here was someone articulating it so perfectly and with heart and humor. After rewatching gadsby specials, I had the feeling that everything was going to be fine. I was practically skipping neurodiversey is beautiful, I'm amazing. Hannah Gatsby and I are going to be best friends. But Gadsby Specials were maybe the only time I felt like I really saw myself reflected back at me. Most of the TV shows and feature films and documentaries on my list got real grim, real fast, Like this little nineteen sixty nine picture called Change of Habit with a young fellow you might be familiar with named Elvis. Oh I got. The opening scene is nun's taking out their clod, which seems like a little respe for nineteen sixty nine. They're putting stockings, Okay. The premise of the film is that Mary Tyler Moore is a sexy nun who is also a psychiatric nurse, and Elvis is a sexy doctor in Spanish Harlem who also plays guitar. The nun sister Michelle, gets assigned to help doctor Elvis in his clinic, and of course they fall in love, even though Mary Tyler Moore's character is already married to the Lord. But the b plot of the film is sister Michelle and doctor Elvis's ongoing interactions with a non speaking girl named Amanda. Brace Yourselves from my running commentary, It only goes downhill from here. Is Amanda your daughter? My sister's kid. She's just come and tumped around me a couple of years ago. Nice work. She never wanted a kid in the first place. Oh, I think she's autistic. Artistic. Nah, she don't even lift up a crayon. Oh my god, no autistic. Sometimes when a child's rejected very early in life, they could call inside themselves and shut out the whole world, as if they're trying to punish the rest of us along with themselves. Oh my god, are you kidding me? So they make a diagnosis in about thirteen seconds, and then later sister Marshall and doctor Elvis cure Amanda of her autism by using a real, albeit pseudo scientific technique called rage reduction therapy. It's where a therapist restrains and confronts a child in order to provoke a rage response that will ultimately end in some sort of breakthrough prompted by eye contact. And it's just as nightmarish as it sounds. Get rid of all your hate, do manage you can? You can start for the love and take a love. Oh try get away the baby. I love you Amanda, she liking people love you. I want to see you. Just get out of you. This is truly terrible. After Amanda stops kicking and screaming and looks doctor Elvis in the eye, hoof no more autism, Oh Amanda, we love you, love you, love you, love love love love you you who love you? Love you? This is not love you love you. Yes, that's a big girl, Big girl. And this apparently is what the medical community used to think about autistic kids just ten years before I was born, That they had a well of hate and rage built up in their systems and all they needed was to be squeezed into submission. Then magically their inborn neurological condition would suddenly vanish. This was the world we had just barely left behind, and this was the legacy I was stepping into with my diagnosis. All of a sudden, this autism exploration was starting to feel really bad, and then I kind of lost it, just like, where where can I go? Or I feel safe? Taken care of where the world is about bending to meet me and not the other way round, not be contorting myself and two billion jeemes definite figure out how to fit, how to live how to live with noise and disruption, and how to deal with just being too much, too loud, too aggressive. I don't know. I just like I'm done. They don't even do it done me. Of course, as anyone who has ever experienced any mental health troubles can attest, sometimes our brains are jerks. They tell us bad things about ourselves and we listen, and the work is to beat back all that badness, and it's exhausting. I felt like my fact finding mission kind of failed. This wasn't just something I could research my way out of. I talked to my therapist at the time. Are lean about it. We have all these bits and pieces, so it feels kind of crazy making and until you can start connecting things. That's that's what humans do. We make a narrative, you know, And that's what you're trying to do with your podcasts, and it's very hard when you're the subject is well with Maybe that was part of the problem. I'm a reporter. I'm used to telling stories and finding truths, and you do that by researching and pounding the pavement and asking questions, but of other people, never about yourself. Now I was faced with a word and I needed answers about what that word meant for me, and I wasn't getting them. I tried to pass through it because you've lived one way for a very long time, in a sort of you know, non autistic way, in a non autistic world. Then to be given a diagnosis that says, well, now you're autistic, and it's like, well, what how do I What does that mean? And it doesn't I guess. Then it's like, well, it doesn't really have to mean anything if you don't want it to mean anything. I think the first thing for you. Then that's what we're doing now, is digesting this for yourself. It's like figuring out your relationship with it. But my work wasn't just figuring out my relationship with autism. Though that was plenty to keep me occupied. I also had to consider all my people's orientation towards autism, my friends, my family. At some point I was going to have to tell them I've been masking for so long, camouflaging my eccentricities and my battles and my general weirdness. What was I going to say to people when I did come out? Would anyone believe me? And how can I talk about something I'm only just learning about with people who know even less. I want to let my people into my reality, but not if it comes with a cost, not if I feel like I have to prove something. I talked to Hanna about that, Like, I can just imagine that almost every single person I talk I talked to there's resistance. But that's true. That will be hard. That's hard, you know, it's hard, Except what Hannah doesn't know is that I'm going to prove her wrong. I'm going to tell all my people and they're all going to be so understanding and ask all the right questions and it's not going to be awkward at all. Right, you've been listening to The Loudest Girl in the World. It's hosted, written, end executive produced by me Lauren Obert. Our senior producer is writer. Also our associate producer is David jah. Sophie Crane is our showrunner and senior editor. Jake Gorski is our mix engineer. Music imposed by my autistic Kiwie Pale the Inimitable Lady Hawk. Our artwork was created by the autistic illustrator Loretta Ipsum. The show is fact checked by Andrea Lopez Cruzado and our autism consultant is Sarah Cappett. Our executive producers are Mia Lobel and Letamlad. Special thanks to doctor Natalie Ingelbrick. You can find her on Facebook at Embrace Autism, Inc. Also thanks to Arlene Levinson and thanks to you friend for listening
